My Last Day of Life Without TN
My day started like a normal day, busy but fairly normal – up early, hop on a train, edit, and more edits while traveling. Looking back, I realize that it was also the very first time I had ever experienced motion sickness on a train – as it was an extremely rocky and bouncy ride that day. (At the time I didn’t know nausea could have been a symptom.) Once off the train and into fresh air, the nausea subsided, and I attempted to get on with my day. The day brought stress, stress, and even more stress. (I did not know that stress can be a trigger for some TN onset.) I returned home via train, and again felt nausea on the trip home, but this time I just attributed that feeling to the emotional and physical stress of the day. Once home, I was exhausted in every sense of the word – mentally, physically, and emotionally – and needed to sleep. I had no idea what the new day would bring.
The Day TN entered my Life
I woke up the next morning after a solid sleep – feeling like I had really slept well, considering the stress of the previous day. The only thing that was bugging me was the fact that I awoke with slightly plugged ears – nothing too alarming though, seeing as sometimes allergens or pollen blowing in through the window at night could cause me to have a little inflammation in the morning. The plugged ears just felt like they needed to pop, but there was no pain. After a relaxed morning, I slowly sat down to a pile of more edits, feeling ready to tackle the job at hand.
At some point during the early afternoon, while still at edits I heard a familiar sound within my head – like cellophane crinkling – which typically accompanied my ears popping. Sure enough, my ears popped and the stuffy/plugged feeling went away and my hearing returned to normal. And then with the very next breath, my life changed.
My thought went from, “Ohh, I can hear clearly again,” to “Damn, why is my ear wax melting, why is my cheek burning, why is my lip numb, why does it feel like someone is poking me in the eye with a searing hot needle, and why is all of this just happening on my left side? Am I having a stroke?”
I quickly asked my husband to check me for a stroke – Was my face drooping? Could he understand my speech? Could I follow directions? Everything checked out fine, but the pain was just hopping from place to place – it wouldn’t stay put – and it wasn’t muscle pain or headache pain – nope, I knew all too well what this pain was – it was nerve pain. Unmistakable and untouchable nerve pain.
This was August 11th, 2017 and this was the day that Trigeminal Neuralgia became a part of my life.
What the hell is this? What’s happening to me? Why me?
Well, edits obviously took a backseat as I immediately went searching for answers. While I still do not have answers to the “Why me?” question, this is what I did find out on that very first day:
What the hell is this?
This hell is Trigeminal Neuralgia.
So, what exactly is Trigeminal Neuralgia?
Trigeminal Neuralgia, in my own words, is a chronic nerve condition where the trigeminal nerve – which is a cranial nerve – misfires and can send errant signals of pain to the ophthalmic nerve, the maxillary nerve, or the mandibular nerve. Any or all of the three branches may be affected.
The Facial Pain Association best describes Trigeminal Neuralgia (also known as TN) this way: “Trigeminal neuralgia (TN) is considered to be one of the most painful afflictions known to medical practice. TN is a disorder of the fifth cranial (trigeminal) nerve.”
WebMD describes TN this way: “Trigeminal neuralgia is an ongoing pain condition that affects certain nerves in your face. You might also hear it called “tic douloureux.”
Trigeminal Neuralgia comes complete with the following set of symptoms (found online at MayoClinic.org) – of which you may have one or more of at any given time:
Episodes of severe, shooting, or jabbing pain that may feel like an electric shock.
Spontaneous attacks of pain or attacks triggered by things such as touching the face, chewing, speaking, or brushing teeth.
Bouts of pain lasting from a few seconds to several minutes.
Episodes of several attacks lasting days, weeks, months, or longer — some people have periods when they experience no pain.
Constant aching, burning feeling that may occur before it evolves into the spasm-like pain of trigeminal neuralgia.
Pain in areas supplied by the trigeminal nerve, including the cheek, jaw, teeth, gums, lips, or less often, the eye and forehead.
Pain affecting one side of the face at a time, though may rarely affect both sides of the face.
Pain focused in one spot or spread in a wider pattern.
Attacks that become more frequent and intense over time.
Yes at this point, on Day 1, I was diagnosing myself. And, no, it really isn’t something you want to self-diagnose. But here I was, pretty confident that I had just found my diagnosis, and I was pretty sure that my TN affected all three of the branches.
This is example 1 of how I have created a life over the past 20 years that has prepared me for TN. So many patients go months or years before an accurate diagnosis. Due to my prior experience with Thoracic Outlet Syndrome (TOS) and having brachial plexus entrapment, I knew what nerve pain felt like, and there was no way I could mistake what I was feeling. Unfortunately, many TN patients can mistake the initial onset as tooth pain or TMJ pain and then proceed down treatment plans that don’t address the real issue.
But when you are first zapped with the nerve pain while seated at your computer, you are most likely to Google the following: “nerve pain one side of face”… then as you scroll through the Trigeminal Neuralgia search results, in addition to the above symptoms and descriptions, you see statements, like these, again and again:
“TN is an excruciatingly painful and debilitating condition, known as “the suicide disease.“
“Of all of the pain conditions that chronic pain patients experience, there are arguably none worse than the pain of trigeminal neuralgia. Often called the “suicide disease” because 25% of sufferers commit suicide, trigeminal neuralgia is pain that spreads over the face and down the neck, triggered by even the slightest breath of wind across the face. This condition is commonly misdiagnosed.”
“Trigeminal neuralgia (TN), also known as tic douloureux, is considered by many to be among the most painful of conditions of mankind, and was once labeled the “suicide disease” because of the significant numbers of people taking their own lives before effective treatments were discovered. The disease entity of Trigeminal Neuralgia has been known now for centuries. It is probably one of the worst kinds of pains known to man.”
So, after thoroughly freaking myself out with Dr. Google, I tried to convince myself that there had to be a different, more plausible reason for this sudden onset of burning, stinging, zapping, numbing, randomly moving nerve pain all along and around the left side of my face and head. But the more I read, the more I was convinced that I had already found the correct diagnosis within hours of TN’s onset.
I have to admit that I was absolutely in shock (yes, pun intended) when TN hit. I was grabbing my face, and constantly wiping away invisible tears as the nerves just constantly misfired over and over, as I read story after story of those with TN. I couldn’t help but read the stories. I couldn’t tear myself away; I had to know what others had experienced, I had to know what to be prepared for, and I had to know what my future would look like. This is how TN and I spent our first day together, and I don’t think the grim outlook fully registered through the shock and the pain.
What now? What can I do? Why me? – Day 2
I woke up hoping that it had all been a fluke, that I was totally wrong, and that my life was back to normal. No such luck!
Not only was I still getting used to this new never-ending pain, I was trying not to let it interfere with all the things that were already on my calendar for the month. After all, I looked fine and there were no outward signs of TN, so I couldn’t just tell everyone that I was in too much pain, or too injured to follow through with all my commitments – nope, invisible diseases like TN are hard for others to understand and frustratingly, impossible for them to see.
Day 2 was rough for two reasons: One, I had TN and two, I didn’t get much sleep the night before. I learned very quickly that TN, (in my case TN2 which I will explain a bit later), doesn’t take time off during the night. Nope, TN doesn’t need sleep – it can just keep going 24/7. That first night with TN was rough and it made the next day even rougher.
I spent my day online researching everything I could find regarding Alternative Treatments or Complementary Alternative Medicine (CAM) protocols for TN. I had read enough about the traditional medical treatments, the invasive procedures and all the pharmacological options to know that I didn’t want to go down those paths.
Those paths are there for a reason, and I know they have worked for some people, and who knows I may actually end up going that route someday – just not yet. Having already experienced a pretty significant and life-changing injury 20 years ago which came complete with its own set of lifelong nerve pain, I knew I couldn’t “go there” with the pharmaceuticals this time.
During my research I found that the Facial Pain Association had a pretty thorough list of treatment options for TN which included the following:
Treatment with Medications – Anticonvulsant medications, which slow down the nerve’s conduction of pain signals, are usually the first treatment option. These include:
Tegretol Trileptal Carbatrol Dilantin Lamictal Keppra Topamax Neurontin Klonopin Lyrica
Tegretol (carbamazepine) is the primary drug used to treat TN. Many physicians believe that the relief of facial pain with Tegretol confirms the diagnosis of TN.
Surgical Treatments – These treatments have varrying levels of invasivness.
Microvascular Decompression (MVD) – MVD is the most invasive of all surgical options to treat TN, but it also offers the lowest probability that the pain will return. This surgical treatment was designed to cause no additional nerve damage. The procedure requires a small opening to be made behind the ear. While viewing the trigeminal nerve through a microscope, the surgeon places a soft cushion between the nerve and the offending blood vessels.
Balloon Compression – This is an outpatient procedure, although sometimes the patient is kept overnight. It is performed in the operating room, with the patient receiving general anesthesia. In this percutaneous procedure, a cannula is inserted through a puncture in the cheek and guided to a natural opening in the base of the skull. A soft catheter with a balloon tip is threaded through the cannula. The balloon is inflated, squeezing the nerve against the edge of the dura and the petrous bone. Balloon compression works by selectively injuring nerves which mediate light touch.
Glycerol Injection -Glycerol Injection is also an outpatient or overnight procedure. It is performed with intravenous sedation. A thin needle is introduced through a puncture in the cheek, next to the mouth and guided through a natural opening in the base of the skull. Just inside this opening is the trigeminal ganglion where all three nerves come together. Glycerol bathes the ganglion and affects the demyelinated fibers.
Radiofrequency Lesioning – Typically performed in an outpatient setting, the patient is sedated for a few minutes while a needle is passed through the cheek, up through a natural opening in the base of the skull. The patient is awakened and a small electric current is passed through the needled causing tingling. When the needle is positioned so the tingling occurs in the same area of TN pain, the patient is sedated again and a radiofrequency current is passed through the needle to intentionally destroy part of the nerve.
Radiosurgery (GammaKnife, CyberKnife, etc.) – A non-invasive procedure performed on an outpatient basis; it requires no incision but may require the attachment of a head frame. Highly focused beams of radiation are directed to the area where the trigeminal nerve exits the brainstem. The radiation causes the slow formation of a lesion on the nerve that disrupts the transmission of pain signals to the brain. However, pain relief from this procedure may take several months.
Complementary and Alternative Medications (CAM) – As in traditional medical treatments, the effectiveness of all CAM treatments depends on several things, including the person’s state of health, and the skill and knowledge of the practitioner. Every person responds differently to treatments, and even though most of these remedies are non-invasive, they still may have potential risk and complications.
- Nutritional therapy
- Electrical Nerve Stimulation
- TENS (Transcutaneous Electrical Nerve Stimulation)
- Upper cervical chiropractic
- Vitamin B-12 Injections
- Vitamin Therapy
So, based on the list above, I decided to throw myself into researching the CAM (alternative) options seeing as we were already practicing Homeopathy, and Nutritional therapy – with that as a good foundation, I started formulating potential treatment plans. I may have been in some of the worst pain of my life, but putting my mind to work helped to distract me from that pain – and honestly, it gave me hope.
At this point, all I could do was search for hope… and pain relief.
How can I get sleep? What exactly is the problem? Why me? – Day 3
After yet another sleepless night, I knew that I needed to find a way to control the pain so I could sleep. With all the commitments that I had on my plate, I knew that it would only be a matter of time before they all started to suffer due to my lack of sleep, and eventual lack of brain function.
Oh, I have a bottle of heavy-duty pain pills in the pantry – definitely expired, but they are there – and I could have used them to help me sleep those first few nights, but I chose not to. As I’ve mentioned before, I have intimate and extensive experience with nerve pain, and I know that as soon as I take something to dull and suppress that pain it will also dull and suppress my drive to find a treatment plan that I can live with. The pain was useful to me at this point – it spurred me to find more information and more alternatives that I may have very well overlooked had I not been in pain.
But, back to my sleep issue – I wasn’t getting it, and I desperately needed it!
I fell back onto some of the studying I had been doing about aromatherapy and herbal healing. I grabbed my notebooks, my resources, and my safety guides, and searched for pain relieving, anti-inflammatory relief. This was something that I have experience with and something that I could do right away. After a little bit of research, I decided on the following formula.
Night-time relief in a bottle – a roller bottle. I mixed up a roller bottle with some essential oils (Peppermint, Frankincense, Thyme, and Copaiba) along with some Fractionated Coconut Oil and began using it at night. I just applied it to the base of my skull – up in my hairline and down to my neck.
This is example 2 of how I have created a life over the past 20 years that has prepared me for TN. I have taken numerous courses and seminars over the past 3 years on herbal healing, herbal constituents, and natural remedies. These courses and the information and knowledge I gained in the process allowed me to confidently create a natural pain reliever.
Armed with this rollerball filled with constituents to help me reduce the inflammation and get the pain under control so I could get better sleep, I began looking into the root cause of TN – the trigeminal nerve.
I began reading up about the trigeminal nerve and the many theories that have been offered up as to why it gets ticked off and begins ruining people’s lives. The basics are broken down like this:
- The trigeminal nerve, like all nerves, is surrounded by a protective shield called the myelin sheath. If that myelin sheath gets disturbed, diseased, or worn away, then the nerve in question – in my case, the trigeminal nerve – cannot function properly. It begins to misfire, rapid-fire, send mixed signals or receive signals incorrectly. Bottom line – the nerve isn’t operating under its optimal conditions and it freaks out, causing hellish pain in the process.
So, what causes the myelin sheath to become disturbed, diseased, or worn away? Well, there are a few causes and finding out which of these were causing my trigeminal nerve to freak out soon became my number one priority. Here is what I learned:
- In most instances, TN is caused by a disturbance at the base of the brain when there is contact between a normal blood vessel – such as an artery or vein – and the trigeminal nerve. The contact can create friction or put pressure on the trigeminal nerve and causes it to not function properly.
- The myelin sheath can become damaged either due to normal aging or due to diseases or disorders like multiple sclerosis.
- Tumors can also cause compression on the trigeminal nerve and cause TN. While some TN could be due to brain lesions or other intracranial abnormalities.
- TN may also be brought on by surgical injuries, stroke, facial trauma, or dental procedures.
Obviously, after reading all the causes I was crossing my fingers that my TN was brought on by normal aging – after all, TN hit 1 month before my 50th birthday, and the research states that TN usually affects people over 50, especially women. (TN doesn’t discriminate though, and there are many children and young people with TN.) So with that little bit of hope, I grabbed my roller-ball of oil and tried to get some sleep.
Who are the experts? What’s the plan & where do I go from here? – Day 4 – Day 7
Day 4 – I woke up that Monday morning early (like 4:30 am early) which is something that I normally do not do. Even though the TN pain was right there with me upon awakening, it wasn’t what had woken me up. I was a bit surprised to have woken up on my own, well rested, and pretty much ready to start the day; but things were obviously changing in my life so I just rolled with it. Get it? I “rolled with it” – yup, I sort of knew right then that my night-time relief rollerball was working.
These next few days were packed full – even without TN, my month was already going to be filled and a bit stressful with edits. Now with the recent onset of TN, I really had to rely even more on my husband and his support to get through the days and weeks of uncertainty that was ahead. Even though I really needed the support of my entire family, I couldn’t bring myself to tell anyone else about what was happening. The last thing I wanted was for my parents or my children to hear me say Trigeminal Neuralgia, and for them to go read all that I had already read about the grim, scary, and sometimes tragic outcomes. I still didn’t know what was causing my TN, so sharing my “self-diagnosis” with others just seemed selfish to me. My extended family didn’t need to be worrying about the unknowns at this time. I wasn’t ready to spread the fear I was carrying any farther than I had to. At least, not until I had more answers and a plan!
Whenever I had a free moment, I would try to read up on newer research or studies on PubMed and other medical journals. The TN pain was always right there, reminding me to search a bit more. There were quite a few papers/studies written about the surgical options, and several written about the pharmaceutical cocktails that could be given to control the strikes and the pain, but there were very few written about non-invasive treatments that offered the patient a chance at remission. It seemed like once a patient committed to a surgical option, there were other surgeries that inevitably followed. And once a patient committed to meds, there came a time when they would stop being effective, and meds that are even more potent would be required.
After finding and reading a couple of promising studies on using chiropractic care (Upper Cervical Care and Cranial Sacral) to treat the TN symptoms, I decided to take a chance and reach out for help. As if led by instinct and intuition, I reached out to a friend, a Facebook friend who has much more knowledge about alternative medicine research than I do – someone who was close to us for a period of time a while ago. They were the first person, outside our household, that I chose to share my suspicions with.
The exchange went a little something like this:
Me: Hey there – I hope this finds you well. I am looking for a professional opinion, or at least an informed opinion about whether chiropractic or cranial sacral therapy may help with trigeminal neuralgia. Do you know if it has ever been used with any success to take pressure off the nerve bundle? I am just beginning my research and of course, I am looking for alternatives to modern pharmaceutical solutions.
Them: I was hoping this was a hypothetical situation. ☹ I’m sorry you are having to deal with this. It just happens that there is a professor at my school who is also a chiropractic doctor in your hometown, and he probably knows all the cutting edge research. I will send you the contact info.
Me: Seriously? He has an office here? Wow…I am so glad I listened to my intuition and reached out to you.
Them: In addition to chiropractic treatment, you may want to start some supplements – take Omega-3’s as a natural anti-inflammatory, and ramp up with curcumin and resveratrol and up your B-12.
Me: I was just looking up foods high in Omega-3’s and looking into supplements to help with nerve health. I will get started on all these right away.
Them: If you can’t reach the doctor’s office I will send you an email to reach the doctor directly.
Me: Thank you! You have set my mind at ease, and I now have a plan.
At the end of this exchange, I think I held more hope in my heart than ever before, and I called and left a message for the doctor.
This is example 3 of how I have created a life over the past 20 years that has prepared me for TN. Somehow I never cut ties, and I was able to reach out to someone from the past, who just so happens to know of a doctor who may be able to help me – and this doctor is actually located less than 15 minutes from my home.
Before heading to bed that night I had not only called the local chiropractor my friend had suggested I call, but I also called and left a message at the local community acupuncture clinic.
As I was researching chiropractic care, several articles mentioned that some TN patients found pain relief using acupuncture. I remembered that my eldest daughter had used the local acupuncture clinic in the past, so I started to dig. I came across a review that a patient had written for the local clinic, and in it, the patient mentioned how well it was working for their Trigeminal Neuralgia. So, obviously, I had to call to make an appointment.
I went to bed, again with my rollerball in hand, and was actually looking forward to the next day – hoping to get a few returned phone calls.
Day 5 – I woke up with one mission in mind. I needed to clear some of the “what-if’s” out of my head!
- What if – this was the beginning stages of MS? (Did anyone in my family have MS?)
- What if – I had a brain tumor/cyst applying pressure on the nerve? (I have a medical history of a previous brain tumor/cyst, but the most recent MRI taken 4 years ago showed that it had dissolved and left behind a void. Did it return?)
- What if – there is a vascular component (vein or artery) compressing the nerve? (There was a vascular component to my TOS 20 years ago, could there be an issue now too?)
- What if – this is all just age related?
- What if – this really isn’t TN?
Now, my logical self was trying to calm my fears, but there was some medical history there that really made a couple “what-if’s” stand out.
I decided to call my primary care doctor to see about getting an appointment. I thought I should get a proper diagnosis, ask for a referral to a neurologist, and get a new MRI to help rule out a couple of those “what-if’s”. Well, of course when I called I was told that he was currently scheduled out 6-8 weeks. I hung up and made the decision to just head in as a walk-in patient, after all, the level 9 pain I had been suffering from for the past 5 days was worth a visit to the doctors, and I really needed to get the ball moving on a treatment plan.
Armed with my most recent MRI films, I showed up at the doctor’s office as a walk-in and waited to be seen. The appointment didn’t go exactly as I had hoped…or maybe it did? (To be fair and for full disclosure, I didn’t get to see any of the three doctors that I know and have seen before – instead, this time I saw a doctor I have no prior history with.)
The appointment went a little something like this:
Doctor: Hi there, what brings you in today?
Me: Well, I have been in a constant state of level 8-9 pain since Friday and based on the symptoms and my history I felt I should come in to get seen.
Doctor: What are your symptoms?
Me: Ever since midday Friday, I have been experiencing extreme nerve pain that is constantly moving from location to location on the left side of my face. And due to my history of having nerve pain in the past, and knowing what it feels like, I recognized that I very well could be experiencing Trigeminal Neuralgia. If that is the case I felt I should get seen to confirm this.
Doctor: Well, you seem to have brought your own diagnosis, what do you need me for? (Yeah, he had a bit of an attitude, but I didn’t have time to mince my words.)
Me: I need you to do a basic neurological assessment to rule out stroke, and confirm TN or preferably offer up another diagnosis. I would also like you to order an MRI with contrast so we can compare it to my prior MRI to see if a tumor/cyst has returned, and I would like you to set up a referral to a Neurologist.
Doctor: (A bit stunned by my frankness,) Fine…(He proceeded to do assessment but was huffy.)
Doctor: Well I don’t like to agree with patients – especially ones that come in already convinced they know what’s going on, because they always jump to the rarest conclusions. But, you are presenting with classic symptoms of Trigeminal Neuralgia, so I have to agree with you.
Me: I was wondering why you say classic? Are you thinking I have Classic TN (aka TN1) or Atypical TN (aka TN2)? I think I am presenting with the “atypical” symptoms and not the classic symptoms. (I am pretty sure he didn’t appreciate me asking for clarification).
Doctor: Fine, atypical, whatever. Well this is easy – I can prescribe a couple things that will make you feel better. Carbamazepine and Gabapentin……
Me: Ok, well I would prefer to look into alternative remedies and treatments before going straight to pharmaceuticals.
Doctor: What? (He sounded rather shocked.) Why in the world would you want to suffer in pain? That makes no sense at all when there are anti-seizure meds that have been known to provide relief and….
Me: I have first hand knowledge of treatments for my symptoms and have traveled the pharmaceutical route for a prior nerve injury, and I will not be taking the meds you are suggesting. I do not want to stop my brain from sending signals of any kind, I want to find and repair – if possible – the physical issue that could be causing the problem.
I have just started to research chiropractic care and acupuncture and some studies have shown that it can help with pain relief and actually has brought about remission in some cases when caught and treated within the first couple years. I would like to try that non-invasive and side-effect free route first, since I am currently only 5 days into this journey.
Doctor: So if you are refusing meds…Then I really don’t know why you are here.
Me: I need you to order an MRI, and I need you to give me an official diagnosis.
This is example 4 of how I have created a life over the past 20 years that has prepared me for TN. Over the years we have been very proactive in becoming our own health advocates. We have taken the responsibility for our health into our own hands, and have learned to keep our own records, keep our heads when we encounter bad attitudes, don’t settle for their …..but offer acceptable alternative treatment methods,e.
I walked out with a diagnosis of TN that I agree with, an order for the tests that I require, a referral to a neurologist, and a prescription for a natural capsaicin balm. My job of being my own health advocate continued, and even though I would have preferred to have been wrong about the diagnosis, I viewed that first appointment as a huge step in the right direction! I officially had my diagnosis of Trigeminal Neuralgia, only 5 days after the onset of TN, but there were a few more tests to run to figure out exactly what type of TN I had, and what was causing it.
Definitions and differences adapted from the Facial Pain Association:
Classic Trigeminal Neuralgia, Type 1 (TN1) is also known as tic douloureux – Spontaneous onset of extreme shocks, strikes, stabs of temporary/episodic pain that can last for seconds, minutes, hours, days or weeks then goes away. TN1 pain is episodic, triggerable, and electric in quality. TN1 may also present with constant underlying pain, but it pales in comparison to the episodic pain. Patients can identify triggers for the recurring attacks, and yet they never know when an attack will hit. Some common triggers are: brushing teeth, smiling, talking, chewing, swallowing, washing one’s face, shaving, drinking hot or cold drinks, blowing one’s nose, a cool breeze, or a light touch to the face.
My own opinion of TN1 is that even though you may not have a constant pain to suffer with, you have got to be in a state of panic at every moment – always wondering if that horrible pain will be back. I can only imagine the mental, physical and emotional toll it takes on a person to be so afraid of “doing” something that could trigger a flare up or attack. Most of those triggers – they happen to be what we all “do” every day to just live – and cannot be avoided.
Atypical Trigeminal Neuralgia, Type 2 (TN2) – Spontaneous onset of permanent/constant pain. TN2 pain doesn’t stop and isn’t typically as intense as TN1 pain. With TN2, facial pain is a constant dull or burning sensation and tends to affect a more widespread portion of the face than TN1. In some individuals, the pain will not go away even for short periods of time. The symptoms of TN2 tend to be more difficult to treat.
My own opinion of TN2 is that even though it tends to be more difficult to treat, there is some peace of mind in knowing that I am not triggering the pain. (Yes, TN2 is what I feel most closely resembles my symptoms). The pain is there all the time, so things like talking, smiling, chewing, and brushing my teeth aren’t going to cause me to flare with intense electric shock-type pain. I just have to talk, smile, and get on with everyday activities on top of the never-ending pain that is always there.
Trigeminal Neuropathic Pain (TNP) – Facial pain resulting from unintentional injury to the trigeminal system from facial trauma, oral surgery, ear, nose and throat (ENT) surgery, root injury from posterior fossa or skull base surgery, stroke, etc. This pain is described as dull, burning, or boring and is usually constant because the injured nerve spontaneously sends impulses to the brain. The injured nerve is also hypersensitive to stimulation, so attacks of sharp pain can also be present. The area which is sensitive to touch and triggers these sharp attacks is the same area where the pain occurs. Numbness and tingling are also signs of a damaged nerve.
I was pretty confident that I wasn’t presenting with TNP seeing as I didn’t experience an injury before the onset.
Trigeminal Deafferentation Pain (TDP) – Facial pain in a region of trigeminal numbness resulting from intentional injury to the trigeminal system from neurectomy, gangliolysis, rhizotomy, nucleotomy, tractotomy, or other denervating procedures. Despite the loss of sensation, constant pain is felt in the numb area(s), which varies in intensity and can include sensations of burning, crawling, tingling, boring, stinging, and/or unpleasant aching.
I was certain this wasn’t the type of TN I had seeing as I hadn’t had any of the procedures listed.
Secondary Symptomatic Trigeminal Neuralgia (STN) – is pain that is brought on by Multiple Sclerosis.
From what I had read, sometimes TN is one of the first symptoms those with MS experience, so ruling out MS was high on my priority list.
Post-Herpetic Neuralgia (PHN) – is pain that is resulting from a herpes zoster outbreak (shingles) along the trigeminal nerve.
With no history of having shingles, I was certain that this wasn’t the type of TN I had.
So, I really wanted an MRI to help narrow down my diagnosis since many of the treatment options that I was wanting to try really wouldn’t help if my TN was caused by MS or a brain tumor/cyst. I needed more information before I could proceed, and now I had the referrals to get those answers.
Day 6 – Again, I woke up well rested, albeit in pain. I didn’t give myself time to dwell on how unfair this was, or that this was not how turning 50 was supposed to go – I just got started outlining a plan.
- Supplements – Take nutritional supplements to help increase my nerve health no matter what type of TN I have.
- Diet – Become a heck of a lot more strict about avoiding foods that cause my body to become inflamed or irritated. (gluten, processed foods, refined sugars, possibly cut out histamine triggers)
- Procedures – Schedule an MRI ASAP to hopefully rule out MS and tumor/cyst.
- If no MS or tumor/cyst, proceed with chiropractic/acupuncture or other CAM treatment.
- If MS or tumor/cyst, locate and contact a neurologist and/or neurosurgeon.
Step 1: Supplements – From the basic information that I got from my friend, and from the additional research I had done, I came up with a list of supplements and by the end of Day 6, I had them all ordered for next day delivery. I started out with the following:
- Vitamin B12 – This vitamin helps promote healthy nerve function. 7 years ago I needed b12 shots, but after 8 months or so I just stopped getting them. After reading up on some TN support pages I found that several patients are experiencing a reduction in their pain after starting b12. The most common form and dose of b12 that was effective is 5000mg of sublingual B-12 Methylcobalamin daily. (side note – over the next few weeks I also ran my DNA through a medical database and found out that I do have a couple of mutations that reduce my ability to process and absorb B12 effectively. Could this also have contributed over the years – wearing down my nerve health?)
- Omega 3 – Omega 3 is known to help strengthen nerves, calm inflammation and reduce pain. Seeing as I wasn’t on any blood thinners I decided to take 2400mg per day.
- Turmeric – I read several studies and research papers on the effectiveness of using turmeric in nerve health and repair and in myelin sheath repair. These studies were more than enough to convince me to up my intake. I decided to take 2000mg per day.
- Resveratrol – Again, after reading several studies I decided to take 500mg per day.
Step 2: Diet – We had already been eating pretty darn clean, so when the time came to examine our diet there were not many changes that needed to be made. We have been eating all organic for 9 years or more, and have been fairly gluten free for the last 7. We eat homemade fermented food daily and have removed all dairy from our diet – except for fermented kefir made from organic cow’s milk or organic raw goat’s milk. We would say that our diet is very much Paleo/Keto in nature.
The only things we hadn’t really focused on were the nightshades and the potential for them to cause histamine reactions. This may very well be what I will need to focus on now.
My overall goal was to be a lot more vigilant in excluding gluten from our day, up some of the foods that help to naturally heal nerves, and reduce pain and inflammation (avocado, salmon, tuna, flaxseed, ginger, spinach and blueberries) and to read up more on the nightshade/histamine side of our diet.
Step 3: Procedures – Getting an MRI would have to wait a bit due to needing to process the referral. But I could line up appointments with Chiropractors, and Acupuncturists.
The good news was that both the Acupuncture and the Chiropractor offices called me back. The bad news was that the Acupuncture office was scheduling new patients for the end of October. There was really nothing I could do but to make the appointment for 9 weeks away and ask to be put on the waiting list for cancellations.
When I spoke to the Chiropractor that my friend referred me to, I was given a shot of hope. Not only was she very well versed in TN, she mentioned a couple of treatment options outside of typical chiropractic care that I had not heard of before. We discussed these options and decided that we would have to wait until I had an MRI before we could proceed. In the meantime, I began researching these options, (Low-Level Laser and Nasal Specific Technique), and how they may benefit patients with TN.
Day 7 – Well, this was the day that it really hit me that I had TN. I mean, the pain had made it quite clear that TN was here, but up until that day, I had been focusing all my energy into making a plan. Finding research and treatments had kept my mind busy and had stopped me from really having to think about all the ways TN was affecting me.
But on Day 7 that all changed. I actually left the house in the middle of the day to meet a dear friend for lunch, and it was obvious from the minute we sat down at a table that things were already changing.
Chatting and small talk was near impossible with the burning pain cycling through my jaw and cheek. Eating and chewing was a slow process as the nerves in my mouth and throat and gums would flare up at random moments. The waves of nausea and dizziness caused by the pain also made it difficult to even want to eat. All of this and the fact that my hand kept flying up to my face prompted my friend to ask if everything was okay… and that was all it took. I explained my TN, shared my fear, exposed my pain, and tried to compose myself long enough to share my plan. After all, I couldn’t dump all this on someone and not let them know that all was not as dark and dire as the stories on the internet said. I did have a plan!
Waiting and Worrying – Day 8 – 16
The supplements had arrived around Day 8, and I immediately started taking them. Fortunately, the night time roller ball was working and I was sleeping. I was plugging away at all the commitments I had on my calendar, and I continued to learn more and more about my TN.
I was waiting for Day 16 to get here – that was when my MRI was scheduled – and during this week I was also worried about all the new symptoms.
The hardest part of this time was getting through the days. New symptoms were popping up daily, and when they would hit for the first time I would be shocked and then would panic a bit before I realized that it was just yet another nerve misfiring.
- Standing in the kitchen making coffee, I was startled when a drop of water (or acid) dripped onto my head from the ceiling above. It wasn’t raining out, and we didn’t even have a leaky roof, yet I still looked up, as I instinctively reached up to my scalp, wondering where the drip came from.
- I was folding kitchen towels at the kitchen island and all of a sudden I felt a tear leaking from the corner of my eye. I reached up to dry it and realized there was nothing there.
- I took a sip of water one day and realized, as the water was in my mouth, that I couldn’t swallow.
- I spent an entire day walking around with a tissue in hand, constantly patting my nose because it must have been runny.
Yep, all of these were just little ways that TN introduced itself to me over this period of time. Random nerves would jump up and act out, sending jolts of piercing pain, sending what felt like acid under my skin to different locations, or numbing entire patches of my face, throat, or nose. These misfires lasted for seconds, minutes, or hours and then would fade away to be replaced instantly by another misfire somewhere else.
Somewhere around Day 12, I think I finally stopped asking my family if I had tears coming from my eyes, or if they could see fluid leaking from my ears (because the searing pain within my ear canal sure in hell felt like all my ear wax was melting and dripping out) but they could never see anything – TN is invisible.
By Day 16 I was fairly certain that I did indeed have TN2. Yeah, I have to admit that every morning I was waking up just hoping that it was all a bad dream and that by some miracle I would wake up and find that all the pain was gone. But no, the fact was and is – I have TN2!
I still didn’t know what the cause was, but the symptoms were all there. Even as I was laying in the MRI machine, trying to be as still as possible, I could feel the searing, stinging pain cycling nonstop from my chin to the top of my head.
This is example 5 of how I have created a life over the past 20 years that has prepared me for TN. It only took me 16 days from my TN onset to get my MRI. Some patients have to get referrals to neurologists or another specialist before they get an MRI. The fact that I had a prior history of a cyst/tumor was now a blessing seeing as it enabled me to get an MRI right away.
The Monday that changed my life: Good News from every direction – Day 18
If you would have asked me on Sunday what my Monday schedule looked like I would have said, “It is freaking full!”
- Our daughter had an online class to kick off her high school math lessons.
- We had a long-standing Monday morning intuitive art class.
- I had a September 1st deadline looming.
- We had a homeschooling group meetup for tweens/teens at the local bowling alley.
- …and, I wanted to get ahold of my doctor’s office to see about my MRI results.
As it turned out, I had to go to art class alone because the online math session was scheduled for the exact same time. Little did I know this at the time, but going alone was absolutely a blessing.
Three of us women were sitting in the art studio working on our ink projects and chatting a bit like we usually do. Somehow the conversation turned to evolution and change, and each one of us started reflecting on how much we have grown or changed over the years. At this point, our dear friend, and art mentor/instructor turned to me and mentioned how she could recall meeting me 20 years or so ago, and how very different I was at that time. She recalled how the pain from my injury at the time had totally hidden who I really was, and how she has watched me over the years take back my life and grow in ways she couldn’t have imagined back then.
Well, that little trip down memory lane is all it took for me to break down. I could vividly remember what TOS and all the medication had done to me, my mind, and my life 20 years ago, and the memories were so close to the surface now with my TN, that I could almost taste the fear. I didn’t want to lose myself again, not after how very hard we all (me and my family) had worked to get past that.
I somehow found a way to share my TN with these ladies, and it looked something like this:
Me: Yes, I remember that time in my life, and I remember how much that pain changed me. Unfortunately, it appears that I may have yet another lesson to learn in regards to dealing with pain. I have only recently been diagnosed with a type of nerve pain that affects my face, sending burning, and stinging strikes randomly all the time.
Long Time Friend: Hm, is it something like Trigeminal Neuralgia?
Me: (stunned, shocked and in disbelief…someone was actually aware that TN exists!?) Uh,yeah it is Trigeminal Neuralgia…how do you know about it?
LTF: Oh, I had Trigeminal Neuralgia 50 years ago.
Me: Had? You mean you no longer have it? How did you get rid of it?
LTF: Goodness no, I absolutely no longer have it. I had it for a while and finally went to a chiropractor and had my atlas adjusted, and after that series of treatments, I no longer had it. (come to find out, she has most likely been in remission for decades)
Me: I am assuming your chiropractor is no longer practicing?
LTF: Oh, I am sure he is long gone, after all I am 76, and this was 50 years ago.
Me: So, you had TN, got chiropractic treatment for it, and it is gone? It hasn’t bothered you in all these years? Your TN is actually gone?
LTF: Well, I don’t have any of the pain or symptoms anymore. I still have had issues with my atlas over the years, but whenever I felt it going out, I would just get it adjusted.
Me: When was the last time you needed an adjustment?
LTF: It has to have been 35-40 years ago.
The conversation continued, but you probably get where I am going with this. I left my intuitive art class with a sense of peace and hope that I hadn’t had when I had arrived.
This is example 6 of how I have created a life over the past 20 years that has prepared me for TN. My pain and life I lived 20 years ago touched the life of this woman, who I just recently reconnected with. This woman has held this knowledge and had this experience with TN all this time without me knowing. And now, at this point in my life she shared her story with me… at a time when I needed to hear it.
When I got home I immediately shared this news with my husband, and again we could not believe how the right people just happened to be in our lives at the right moment. We knew this wasn’t a coincidence.
I needed to get edits done, but now I also needed to check to see if the chiropractor that I had already spoken to adjusted the atlas. Moreover, I also needed to learn a little bit more about what the atlas is. It was time for me to do more research.
After doing research, I discovered that Atlas Orthogonal treatment of TN isn’t fully supported by the mainstream medical practitioners, but then again neither are many other Complementary or Alternative practices. I read a research paper on PubMed regarding chiropractic care with TN, I found several TN patients on support forums stating that Upper Cervical Chiropractic (UCC) and Atlas Orthogonal (AO) had provided pain and symptom relief for some of them, and I had a first-hand testimonial from someone whom I trusted. Honestly, that was enough for me to put Atlas Orthogonal treatment to the top of my list. Plus, it was non-invasive and I didn’t have to take meds that would disrupt my brain function.
Even though AO was now at the top of my list, I still needed to locate a provider because AO is a specialized treatment and there are only a certain number of providers in the country, and the Chiropractor that I had been put in contact with was not an AO practitioner. I still needed to get my results from my MRI – without the results, I couldn’t proceed with any of my plans.
With only a few minutes to spare, I called my doctor’s office before they closed for the day. I was told that the MRI showed clear, or more accurately, that there were “no changes” from my last MRI. “No Changes”…this didn’t mean my MRI was normal by any measure, but it was good news to me at the time.
See, I have a little void in my brain – yes, I have a little extra space between my ears. 20 Years ago during an MRI for my TOS, a neurologist found that I had what he called a cyst pushing up against my pituitary gland. His thought was that it had been there for years – growing very slowly – and that it wasn’t related to my TOS. I honestly put the thought out of my mind at the time, seeing as the neurologist didn’t seem concerned about it, and just mentioned it in passing.
Seven years ago, I was getting this feeling of fullness or heaviness in my skull – mostly upon awakening and sitting up in the morning, and I was also experiencing vertigo and waves of nausea during that time. My blood work showed I was deficient in D3 and needed B12 shots. Something just didn’t feel right, so I asked my PCP if any of my issues could be caused by the cyst on my pituitary gland. My PCP thought it would be wise to run another MRI to see what was going on.
I honestly didn’t know what that MRI would show 7 years ago, but after seeing two neurologists, and an endocrinologist we were left with two theories about the “space between my ears”.
- Theory 1 – I had a cyst – most likely from early childhood – that over time grew from the size of a matchstick head 20 years ago when it was first spotted to the size of a large almond 7 years ago. The cyst was no longer there but somehow left a void as the surrounding tissue/cells never returned to their original locations.
- Theory 2 – I had a benign tumor – most likely from early childhood – that over time grew, from the size of a matchstick head 20 years ago when it was first spotted, into a tumor the size of a large almond at some point. As the tumor grew, it (and it’s solid mass) pushed the surrounding tissue/cells out of position creating the void. Then somewhere along the way (most likely 13 years ago when I was pregnant) my body starved the tumor and it died off, leaving behind the void.
Either way, this left me with a little extra space in my brain, and a nagging worry about whether another cyst or tumor would come back. So hearing that there we “no changes” in my MRI was extremely good news to me. I no longer had to worry about my TN being caused by a brain tumor. I also was able to rule out MS based on my newest MRI results. This opened the door for me to proceed with my treatment plan.
All that was left for me to do on this Monday, was to take my kiddo to the local bowling alley and let her have fun as I mentally made a list of where to go from here. This was probably one of the best Monday’s ever – good news was coming from all directions!
New Beginnings and Harsh Realities– Day 19 and Day 20
My mind was in overdrive. Too many things racing through it and not nearly enough time (or mental clarity) to sort them all out. The pain was making it harder and harder to focus and concentrate. On more than one occasion, I found myself feeling desperate to relieve myself of the pain. Yes, those pain pills in the pantry were calling my name, but during these 20 days I had stayed strong and only gave in to 3 glasses of red wine for medicinal purposes.
Still, I hadn’t shared the news with my family, but I knew that the time was coming close – I would be telling my older children soon. I just didn’t know when.
These two days were filled with new beginnings. Our oldest daughter celebrated her birthday, our son and his significant other relocated to our property and started the process of putting a home on a piece of it, and our youngest daughter started what we are calling “another year of high school.” These were obviously not days that I could “break the news” to the family. These were days to celebrate…and days to get the lead out and get things finalized, as my September 1st deadline for edits loomed closer.
Day 20 was also the day I found an Atlas Orthogonal specialist. After doing my research and speaking to some well-respected professionals in the chiropractic field, I searched the GlobalAO.com website for a board-certified practitioner.
There are approximately 500 AO practitioners in the world, but living within 60 miles of our state capital here in California, I figured there would be at least one practitioner within a drivable distance. I was absolutely surprised to find that there was a board-certified specialist located within 8 miles of my home. Seriously, in my small town (population of less than 16,000 people), we have an Atlas Orthogonal specialist.
So, do I get to count this as example 7 of how I have created a life over the past 20 years that has prepared me for TN? Having always lived in the suburbs my entire life, I never thought I would be living in a rural homesteading type environment. Yet over the course of 20 years decision after decision and choice after choice found us here in the Foothills living this life in this small town – with an AO specialist practicing very close by, who also happens to have experience treating TN patients.
After exploring the AO specialist’s website – watching all the videos, seeing the images (like the one to the left), and reading all the testimonials – I submitted a new patient inquiry online and printed out the new patient forms and began filling them out. By 4 pm that day I had received a call back directly from the doctor himself; to say that I was elated would be an understatement. He took some time to discuss my case with me, explained that he was going to be speaking at the Sacramento Area TN Support group in a couple weeks, and then transferred me to his front office staff to schedule my new patient appointment, and that’s when my elation turned to disappointment.
Unfortunately, this doctor was in demand (just like the local acupuncture clinic) and the first available new patient appointment was over 8 weeks away. I could feel the tears welling up in my eyes as his office manager scheduled me for late October, but I was able to maintain my composure long enough to ask to be put on the cancellation list – although I am sure my voice was already beginning to break. I was told that they rarely have new patients cancel, but she obviously heard the despair in my voice and put me on the cancellation list, without giving me any false hope.
There it was, in the span of 20 minutes I went through the emotions of elation, hope and promise to disappointment, and despair. It was now looking like I wasn’t going to get relief from this horrendous pain anytime in the next 6-8 weeks. I honestly didn’t know if I could hold out that long, and I was rethinking my decision to go without pharmaceutical meds. I consciously made the decision after hanging up that I would just get past my September 1st deadline (which was two days away) and then look into taking meds.
I still had a plan, but I obviously had no control of the time frame.
The Three Week Mark – Day 21
I slept in until 8 am. There was no early morning get up and go – I was physically, mentally and emotionally exhausted. I only had 2 full days to get a heck of a lot edits accomplished, and I was obviously burning my candle at both ends. By the time I got up and got my coffee the rest of the house was already well into the morning chores. I guess I was feeling sorry for myself and had already started to resign to the fact that I couldn’t control everything. Yeah, pretty sure this was the beginning of a pity party – just me, my TN, and a cup of coffee.
I was just getting settled into my little pity party and had taken my first sip of coffee when my cell phone rang. Who in the world was calling at 8:25 am…everyone and anyone who knows me knows that there was a good chance that I wouldn’t be coherent at that time of day.
As it turned out, it was the office manager at the AO specialist’s office calling to say that they actually had a new patient scheduled for 8 am, and they were a no-show. Could I be there within 10 minutes…if so, then I could take the remaining 2+ hours that had been set aside for a new patient visit.
Obviously with news like that I no longer needed my coffee to wake me up. I threw something on, brushed my teeth, grabbed my husband from the garden and had him drive me the 8 miles to my appointment. I think I was a bit in shock that this was all playing out the way it was. But before I knew it, I was walking into the office and was brought to an exam room. This was really happening.
Our understanding of the mechanics of the body and our understanding the theory behind AO allowed the doctor to cut through a lot of the education portion of the appointment, and we quickly got to the exam. There is no way to explain exactly how this first appointment changed my life. And, unless you have known me for over 20 years, you may not fully understand how much my prior TOS injury has affected my day to day life – so you wouldn’t get how huge it was to literally walk away from this appointment feeling better than I had in years.
You see, adjusting my atlas didn’t just set the stage for my TN treatment plan, it also immediately opened up the passages in my head and released some impingements on veins and nerves that had been compressed, compromised or agitated for years. The changes I felt immediately were real, were measurable, and were obvious to my husband and me. Was I completely healed? Heck no, the TOS was still there, and the TN pain was still there; but I honestly felt that I had just given my body the opportunity to start healing itself. I can’t explain it in medical terms, but I felt as though my body could now deliver the healing and nutrients unhindered.
On Day 21, I had my very first AO adjustment and I knew things would be different from that point on. I just knew it.
D-Day: A Day of “Don’t,” Deadlines, and Discussions – Day 22
I wish I could say that the AO adjustment was quick and easy, a one-time deal and that it immediately reduced my TN pain. Unfortunately, it didn’t work that way – nor was I really expecting it to. I am not a person who looks for the quick fix anymore. I am a realist, and I know that it takes time to heal. I had read articles, research papers, studies, and more that all explained that there is no known cure for TN, only remission – with no guarantees of how long that remission may last.
So, armed with that knowledge, I allowed myself to accept the uncomfortable twinges of a newly adjusted C1 (Atlas). I followed the doctor’s instructions and iced 4 times a day for 20-25 minutes, and set out to reprogram my life to avoid as many of the following actions as possible (seeing as many of these could knock my correctly seated Atlas out of adjustment):
- No more sleeping on my stomach.
- No falling asleep on the couch with my head propped on the arm of the couch.
- No falling asleep while sitting upright.
- No sleeping on my side without neck support
- No more reading or iPhone usage in bed.
- No propping my head up on my hands for more than a few seconds at a time.
- No looking up for extended periods of time. Cranking my head up to look at the stars, or to watch birds in flight will have to wait awhile.
- No cracking or popping my neck when stress or tension sets in.
- No staring down at my iPhone for hours everyday – I have to keep my head level and use my hands to hold my phone at eye level.
- No holding my phone between my ear and shoulder.
- No whipping my head backward to get my hair out of my face after washing my hair.
- No flipping or shaking my head or hair when blow drying the underside of my hair.
- No turning my head to look over my shoulder when driving – must turn entire torso.
- No getting dental work done in a reclining position with head lowered at an odd angle.
- No hair washing or dying reclining backward on a shampoo bowl at a salon.
- No working on a laptop with the screen lower than natural eye level.
- Reassess my bifocals, seeing as I need to tip my head up and back to use the readers – No more using my current glasses.
There were quite a few more “do not do this…” instructions, but to be honest I wasn’t lifting weights, doing cartwheels, or heading a soccer ball prior to TN, I sure couldn’t imagine doing any of them (any other athletic endeavors) after having TN. Now, it isn’t that I will have to avoid these actions forever, but for the next several months it was recommended to avoid them while my body (spine, muscles, ligaments, and tendons) learn to adjust to the correct positions.
This may seem like a lot of “do not do’s,” but with the amount of non-stop pain that was cycling through my face, I was willing to follow the instructions if it gave me even a 10% chance of lowering my pain at all.
In addition to following all these new instructions and icing on and off all day, I couldn’t forget the fact that I still had a deadline. So, the bulk of my day was spent in an ergonomically correct position with family members replenishing my ice packs as needed. There was a light at the end of the tunnel, and once I met this deadline I would have more time and energy to devote to me and my health.
Somehow during this crazy busy day, a couple of opportunities to have meaningful conversations with my eldest children presented themselves. At one point in the day I found myself on the phone with my eldest, and while she and I were chatting, I realized that I was now in a place (mentally, physically and emotionally) to let her know what was going on. It sounds funny to say, but it honestly felt good to share the news – yes it is a horrible diagnosis, but I had genuine hope in my heart and I am sure that my optimism came through in our conversation. And later that afternoon, I found myself face to face with my son and was sharing my diagnosis and my current treatment plan with him. In both of these conversations I never once felt like I was burdening them with this knowledge, and I felt like I was able to inform them without adding worry or fear.
Treatment Protocol: Finding a new normal – Day 23 – 30
The next week sort of set the rhythm for what I would describe as my new normal. I committed to a 30 day AO treatment plan, and after 30 days we would assess my progress and look at either making changes or continuing for the next 30 days. The goal was to see a marked improvement of my TN within 100 days. I was willing to give it 100 days.
My new normal looked something like this:
- Drink a shot of kefir with elderberry syrup and enjoy a cup of coffee while icing for 20 minutes.
- Eat breakfast and take Turmeric, and Resveratrol.
- A spoonful of fermented sauerkraut or kimchi.
- Omega rich tuna fish salad with ½ avocado.
- Take B12
- Ice for 20 minutes.
- Dinner with some type of fermented food (either pickles, kimchi or sauerkraut).
- Take Turmeric, Resveratrol, and Omega 3.
- Ice for 20 minutes.
- Apply Night time rollerball to nape of neck and up into hairline to base of skull.
- Ice for 20 minutes lying on back in bed.
- And…sleep well for at least 6 hours waking up fairly early (4:30-5:00) refreshed and well rested.
I repeated this for the entire week. In addition, I went in for AO treatments 2 more times that week. Both visits were for minor rib adjustments and shoulder, elbow and wrist adjustments for my TOS, but at both visits, my Atlas was still holding in place. By the end of the week, what would be my 30th Day with Trigeminal Neuralgia, I was feeling very hopeful and my daily pain from TN was down from a constant 9/10 to a 7/10.
Treatment Proceeding: Looking for support but finding fear – Day 31 – 37
Not many changes during this week, as I really wanted to give my treatment protocol a fair chance. I had two more AO treatments during this time frame, and again my Atlas was holding up well. I only needed adjusting for my cervical ribs and again for my TOS. I was pretty darn proud of myself for following all the instructions about icing and for avoiding the actions that could knock my Atlas out.
This week also brought me face to face with my 50th birthday. Yep, I celebrated the big 5-0 with my entire family, and I didn’t let TN ruin the day for me.
We have a saying in our home, “Don’t get happy. You can be happy, but don’t get happy.” It is our way of reminding ourselves to be here in the now, and not to look too far ahead. I was certainly happy about my progress and happy about how my pain level seemed to have dropped again. By the end of that week, my daily levels were at about a 5/10 or 6/10. The burning was less intense (as if someone was choosing to use a lower voltage to shock me) and the searing pain that would feel like molten metal in my ear became much duller almost achy instead of stabby. I was trying really hard not to “get happy”.
The week ended with a trip to Sacramento to attend the monthly support meeting for TN patients. As I said earlier, my AO doctor was the featured speaker this month. Not only did I get to meet others who have TN, I got to learn a little bit more about Atlas Orthogonal and several other complementary and alternative medicine treatments that can benefit TN patients.
As I sat there in the support group I was humbled –humbled by those who have been fighting TN (in its various forms) for 10, 20 or 30+ years. I listened as they shared their stories of trials and tribulations. I heard about their failed surgical procedures and their successful ones. I heard about remissions and then relapses. Through all their stories what I heard the loudest was the fear – the fear in their voices was deafening.
Being in a room with strong individuals who have obviously been changed by TN wasn’t easy. As much as I wanted to get support, part of me wanted to run away from what I only assumed could be a glimpse of my future. The fear in that room was inescapable. Every conversation was guarded as fear was behind every word they spoke. I noticed that fear even had a way of clouding what they were hearing; it was as if fear laid a blanket of doubt and pessimism over any new idea or treatment option.
I didn’t judge the others for this reaction as I am not even certain they were fully aware that it was their reaction. I remember all too well my own reactions to someone spouting off about the possibility of a new treatment that could take away my pain and return my life to normal. I know what it feels like to be so empty of hope that you just nod with resignation; feeling like no one understands how hurtful hope can be.
I sat there almost feeling guilty for how much improvement I had experienced in just a short 37 days. I honestly felt like a cheater – like somehow I took cuts in the Trigeminal Neuralgia line and was now standing towards the front of the pain line where the pain is more tolerable. Those thoughts were then followed by doubt, heavy, substantial doubt. What if I am just naive and my treatment plan isn’t really working? What if I am only in TN’s infancy and only dealing with baby pains with the real adult pain just waiting around the corner to pounce? These people must know something that I don’t because surely they at one time were as invested in and open to finding a solution to their TN as I am now.
With this new perspective – actually seeing the faces of these TN warriors, hearing their words, and feeling their despair – I began questioning my plan. I began to wonder how I could venture to believe that I am so different. How dare I believe that somehow I have figured out how to outsmart TN. I left feeling pretty darn deflated.
Reality Check: Got to keep things positive – Day 38 – 44
It took me a couple of days to process my experience at the support group. I was fortunate to have an appointment for another AO treatment the following Monday, so I took that opportunity to discuss some of my feelings with my doctor. I fully understood that I was having a conversation with someone who already agreed with my treatment plan, so I wasn’t going to get a completely objective opinion, but it did feel good to get the thoughts out.
Again, during the exam, he found that my Atlas was still in, and I reported that my TN pain levels were now at about 4/10 consistently, and I couldn’t really believe how far I had come in just this short period of time. Up until recently, I didn’t realize how often other’s atlases needed adjusting. I had just assumed you get it adjusted, you follow the instructions, and it stays put. Over time the muscles and ligaments learn to get used to it in its correct position and they all live happily. See, this is a bit of that naiveté that I mentioned earlier.
My doc explained that yes, muscle memory and ligaments can play a part in the Atlas staying seated or becoming knocked out, but he said something that really gave me back my hope. He said, “The treatment is only as good as I am at my job and as good as you are at your job.”
Meaning that he has to reset the Atlas correctly and adjust the surrounding area to help support the atlas to stay put and that the patient needs to not do things that make it easier for the atlas to pop out of position. He said many patients have years of bad habits to undo. They cannot just stop doing what they have always done. They reach above their heads for heavy objects, they may twist and turn and torque their necks while vacuuming or scrubbing pots in a deep sink. Every movement and motion could have the potential to cause a problem, and many TN patients have to go through a period of relearning what motions are off limits during treatment – thus their atlas needs more adjusting and overall healing can take much longer. Some patients can’t make these life changes during AO treatment and end up concluding that AO can’t help them. And yes, sometimes AO really cannot help TN patients even if they are committed to making these life changes.
This made so much sense and helped me understand why I had seen such improvement and progress to date. I wasn’t cheating, I didn’t cut to the head of the line, nor was I being naive. Instead, when TN hit, I was fortunate to already have a very keen awareness of my “nerve web” and had years of experience knowing which movements I could and couldn’t (or shouldn’t) do if I didn’t want to cause a TOS flare up. When TN hit and I started this AO treatment I was ahead of the game due to my ability to recall what I had learned over 20 years prior – what I had already had to incorporate into my life.
This is example 8 of how I have created a life over the past 20 years that has prepared me for TN. My prior experience with TOS, and having it alter my life dramatically was now a blessing. The fact that my immediate and extended family had seen me through the darkest of my TOS days, meant they were already supporting me and understood my physical limitations. Having my support system in place made for a much smoother transition when TN hit.
I would like to report that the rest of the week was pretty darn normal, but that wasn’t the case. A positive thing that did come from this week was that the local acupuncture clinic had a new patient cancel, and called to ask if I wanted the appointment for Friday. I jumped on the chance, as taking the appointment meant that I could add yet another CAM treatment to my plan, hopefully helping me to reduce my stress and pain. But before I could get to my acupuncture appointment on Friday, I had another AO treatment scheduled for Thursday. And, that Thursday I knew before even walking through the door that my Atlas was out, and I was about to learn exactly how it happened.
You see, for my 50th birthday, I was gifted so many thoughtful presents by my family. Among the wonderful gifts were two brand new therapeutic pillows – one for back sleeping and one for side sleeping. I had opened them up and set them on a dresser to air out before using them, and didn’t get around to trying them out until the following Tuesday evening. As I was getting ready for bed I tried them both out and realized that the back sleeping one felt super comfortable and gave me lots of support (prevented my head from rolling from side to side – which irritates my neck muscles) so I decided to use that one for the night.
I woke up Wednesday morning, and upon sitting up a wave of nausea came on. Then when I began moving I realized that my right shoulder, elbow, and wrist were in a full-blown TOS flare up, with horrendous nerve pain at each joint. My neck muscles were in spasm, and I felt as if I was right back at the beginning of my initial TOS injury 20 years ago, and the TN pain was right there with it.
At the time I didn’t realize it was the pillow that caused these issues but just figured that somehow I must have overdone it. I iced even more frequently, enlisted my family even more in the day-to-day chores and household upkeep, and tried to make it through the days until my next AO treatment.
On Thursday, as I was waiting for my exam, I thought to myself that the last time I was sitting here in this office I must have jinxed myself by saying how amazed I was that my Atlas had been holding so well. I thought I had been vigilant and was following all the instructions, so sitting here in pain was a reality check – I obviously had more to learn.
After getting my Atlas put back in place (which took three adjustments this time), the relief from the TOS nerve pain was almost immediate. I could feel the blood flowing back into my fingers as the icy coldness that I have lived with for 20 years was replaced by warmth. Resetting my Atlas didn’t fix me, my TOS, or my TN, but it did seem to fix my alignment so that my body could work on healing itself. Even after the adjustment, I found myself still sitting there with a new sense of fear. I still did not know what I had done to knock it out. My doctor took more time with me and we walked through my last few days and when I explained how excited I was about my new pillows he grinned and stopped me right there.
Yep, a brand new supportive pillow was just way too firm to let my head rest comfortably with my neck supported in a neutral position. I had inadvertently knocked my atlas out by sleeping on my back with my neck craned and kinked. I decided not to beat myself up over this setback, but I was definitely going to learn from it.
I left my appointment feeling better, but also a bit concerned due to the fact that my doctor was going on vacation for 2 weeks. And even though there was a backup AO specialist on call 40 miles away, I was a bit fearful of knocking my atlas out over the next few weeks. Good thing I was going to start acupuncture the very next day.
I walked into the Acupuncture clinic a bit sore. (I was still tender and sore from the TOS flare up, and from the recent AO treatment) I sat down with the Acupuncturist, and she and I discussed her experience treating TN patients. She was honest, and explained that she cannot cure or heal TN, but that some patients do respond well to treatments, and that if I didn’t feel any relief or see any progress after 8 visits, that I would probably need to keep looking for other treatments. I appreciated her honesty.
I had no expectations when we began the treatment, I just reclined and settled into a comfortable position and trusted her to do her job. I remember thinking, as she was inserting the needles, that they really didn’t hurt – until she inserted one around my left shin area. She inserted it and then asked me to tell her when I felt an uncomfortable ache – she moved the needle a bit and I waited for an ache…nothing. She moved the needle a bit more and I waited for an ache. Again, nothing. By this time I began wondering if there was something wrong, and then wham! I felt an ache hit and grab right where the needle was. It was definitely more uncomfortable than painful, but the intensity of the feeling is what made me widen my eyes in shock.
After all the needles were inserted, I put my headphones in and listened to a meditation as I searched my face for the TN pain. Yep, it was there at the corner of my eye, then traveled to my scalp, and finally rested on my cheek with a feeling of burning acid. I rested and relaxed and went deeper into my meditation. 45 minutes passed and I realized that I had actually fallen asleep. As I awoke, I searched for the TN pain (like I do every morning) and I was a bit surprised that I couldn’t find it. I laid there with my eyes closed and kept my breathing steady as I gently checked in with each region of my face looking for the pain. For 25 minutes I searched and couldn’t find it. Then, as my treatment time was up, and I began to move and stretch the TN pain came back – but as a gentle burn along my jaw – very light but noticeable.
I walked out of my first acupuncture treatment a little lighter – still sore from the previous adjustments – but feeling a little lighter due to the entire acupuncture treatment. I was happy that it did no harm and didn’t cause my symptoms to get worse. I was happy to have rested and to have been able to meditate for an hour or two. I was happy that I experienced a pain-free (or such a light pain that it wasn’t noticeable) period of time – even if it was only for 30 minutes or so. I was happy to end my week with a positive experience and a positive frame of mind. I walked out and was immediately looking forward to my next appointment.
Maintaining in the middle of chaos – Day 45 – 51
My goal for this week was to just make it through the week without knocking my Atlas out seeing as my AO specialist was out of town for the next two weeks. I was going to adhere to the movement and action restrictions, go back to my old pillow, continue taking my supplements, add a few more acupuncture treatments to help reduce stress and pain, enlist my family to help with more of the physically demanding chores, and continue my icing protocol. I was being realistic and had no ideas of attempting to reduce my pain levels any, I just wanted to maintain them where they were for the time being. Living with level 4/10 pain is still painful and annoying, but it is manageable. The word “maintain” was my mantra for the week.
So, once you select a mantra you should be aware that the universe will present you with numerous opportunities to test your resolve (insert eyeroll here). Just making it through a normal week wasn’t enough – nope! This week in addition to all the normal stuff, the universe decided that we needed a little more stress and the following got added to our plate:
- One of our pups (though she is 10 years old) decided to stop eating, became quite lethargic, and was showing signs of intestinal distress. She was treated to a trip to the vet on Thursday.
- That same Thursday as my husband was at the vet’s office with our pup, I looked out and saw our oldest goat laying down by a fallen tree. That wouldn’t normally be of concern, however, feed had just been distributed and he wasn’t getting up to get his fair share the way he normally would.
- There was no time for me to go investigate (and physically, I really shouldn’t be attempting to check on a potentially sick goat) because we also had an appointment to interview a potential house/pet sitter this same day.
So, the husband is at the vet with one pup, and we have one goat who looks as if he has fallen and can’t get up and cue the knock at the door. Argh….maintain. Good thing I had another acupuncture treatment schedule for the next day. It was definitely needed!
Friday was filled with surgery for the pup, hand feeding of an old goat, acupuncture, and then various errands that needed doing around town. Still – maintain.
Somehow, I made it through the week with only a slight increase in TN pain, but I felt that my Atlas was still set properly, so I count that as a win. I survived another week with TN!
Sunday, October 1, 2017 – My 52nd day with Trigeminal Neuralgia.
There I sat, icing my cervical spine and typing up these words as a way to process all that I am going through. I had been carving out a little time each day to write down bits and pieces of my life with TN without really having an end goal in mind.
I think a huge part of why I wanted to start writing it all down is that I know what pain does to my mind, my memories, and my life. I look back to my TOS injury 20 years ago, and there are literally years that I do not remember – gatherings, outings, celebrations, daily events, and milestones that are just gone. The mind-numbing meds that I was taking to stop the nerves from misfiring, and to control the pain had a side effect that wasn’t listed on the warning label.
When TN became a part of my life 52 days ago, I was thinking clearly enough to know that I would want to remember as much as I could of these early days. I knew that over time, my mind may change, and the pain may someday get to be too much, and I wouldn’t be able to retrieve these moments and memories as easily as I can now.
These words are really for me, yet while I have been writing and living with TN I have come to realize that there are others who are just now feeling their first TN strike and are just now searching for information. Maybe these words are also meant for them to find – meant to give them a view into a different type of TN story. A story that doesn’t focus on TN as the “suicide disease”. Instead, a story of how one person is addressing TN from multiple perspectives and using CAM treatment options. A story of how one person is addressing TN from the top down and from the inside out.
I am not a TN expert ~ I am not a pain management professional ~ I am not a medical practitioner
I am me – a 50-year-old daughter, wife, and mother of three, that somehow has lived a life that has equipped me to live with TN. And, by putting these words to the page, and making it open for the world to read, I am choosing to no longer “hide my TN in plain sight”. Trigeminal Neuralgia is an invisible disease, and as an invisible disease, it tends to go unnoticed and leaves it’s sufferers feeling isolated and misunderstood.
Today, marks the beginning:
- The beginning of October.
- The beginning of Facial Pain Awareness Month.
- The beginning of me coming out of hiding.
Today I stepped out into the open, outside of my comfort zone, and in a way, I have exposed myself – I added a Facial Pain Awareness frame to my Facebook profile picture. This was not comfortable, but it was necessary in order to bring awareness to Facial Pain diseases, syndromes, and disorders. I still have not been able to bring myself to call my closest friends and tell them – I just can’t.
A little awareness each day & Maintain! – Day 53 – 54
What should I say? Who should I tell? How will people react? How much is too much?
All these questions and more have been swirling around my head these past 8 weeks, and it has honestly taken me nearly that long to come to terms, and to formulate this and put it on paper – and eventually put it out there for all to read.
When I set out to write this, I had no idea it would coincide with Facial Pain Awareness Month. But, when I found out that it did, I think I felt an even stronger push to get this out there, no matter where I was with my treatment plan. Maybe that is what I can offer as far as bringing more awareness to Trigeminal Neuralgia.
So in addition to raising awareness this week, I have also been trying my best to keep my Atlas in check – doing my best to maintain. I won’t see my AO specialist for another week, but I did make two more acupuncture appointments, which should help keep me relaxed and help with the pain, between now and then.
On Monday, I took another baby step to raise awareness and posted a video about Facial Pain to my Facebook timeline. I didn’t make it clear in my post that I was, in fact, dealing with this facial pain – still wasn’t ready to do that – but I did want others to know that facial pain exists. This is a link to the video I posted to my page:
Facial Pain – What Is It? https://youtu.be/mmT8elmPczU
In a way, I thought that since it was so different from my usual posts that someone would have commented on it…but no. Maybe subjects like this just don’t get attention when people do not know someone directly affected.
On Tuesday of this week, I tried to raise a little more awareness, again without outright stating that I am the one suffering from facial pain. I just changed my Facebook cover photo to this:
This time I did get a few acknowledgments, but again, I wasn’t expecting comments seeing as no one really knows if I am posting this in support of a friend, someone in my family, or if it is for me. And somehow people are hesitant to ask – and I don’t blame them. Raising awareness doesn’t seem to be effective when you are still partially hiding.
TN brings about changes – Day 55 – 57
Changes are Happening – January 27th of 2017 my youngest daughter and I attended our very first Spirit Lodge Drum Circle. It was a great night surrounded by women who were all celebrating our connection to nature, connection to each other, connection to the past, present and future, and connection to the oneness of the universe. We hesitantly at first, and then more confidently participated in the drumming and singing as we all celebrated this time together.
These monthly Spirit Lodge events have become a priority, and we make sure that we carve out time to attend every month. The sense of belonging and community building help to carry us through the hectic and busy months. Now, as we head towards the end of the year it feels as if we are “old timers” – like we have been attending for years – we feel as if we belong.
Unfortunately, the August gathering was canceled due to the extreme heatwave that hit our area, so we were really looking forward to catching up with everyone at September’s gathering. We arrived just in time – not early nor late – and made our way to the circle to find some seats. I wasn’t moving too swiftly due to the stiffness and soreness from my AO adjustment the previous day (yeah, my Atlas had gone out the week of the gathering) and I made sure we chose seats near the door in case I needed to leave. Already I realized that TN was changing the way I was experiencing events.
We sat down and my daughter began to join the drummers in their rhythmic beat as I settled in and greeted our friends. Throughout the evening I attempted on several occasions to drum along – but I quickly realized that the vibrations were just too much. With each strike of the drum I was sending vibrations up into my head and my TN began to flare. My experience was changing, and TN took some of my joy away that night.
Well, that Spirit Lodge experience prepared me for what was to come. It made me quite aware that I would have to look ahead and plan and prepare for any upcoming events. I would have to figure out a way to have a memorable experience without paying too high of a price.
That planning and preparation sure came in handy on Wednesday of this past week.
Back in December, we bought the tickets to a big concert – a concert that our youngest daughter was really looking forward to. But December was a long time ago, it was the time before TN, and so much has changed since then. Now, as excited as I was for my daughters to enjoy this concert, I was also dealing with the uncertainty of what the loud noise and vibration would do to my TN. I was not ready to give up these experiences with my family, but I knew that there was a good chance that there would be a physical cost to pay for this event.
I tried to prepare as well as possible.
- I scheduled an extra acupuncture treatment for the late morning on the day of the concert.
- I applied my night-time rollerball several times during the day – including right before the start of the concert.
- I made sure we got to the venue early – avoiding traffic.
- I made sure to take my supplements as planned.
- I took a couple “Excedrin Migraine” pills before the first band began.
- I packed handfuls of earplugs into my purse.
With a little pre-planning, I was able to be present and enjoy the experience with my girls. Did my TN flare up? Yes. Were my daughters concerned about me? Yes. Did TN change my overall experience? Yes. Did I let TN stop me from enjoying the show and making memories? No! I did, however, take the following day to recover!
This week it has become even more clear to me that changes are not good or bad. They are by definition “the act or instance of making or becoming different”. I am trying very hard to reframe the changes that are coming about due to Trigeminal Neuralgia – they are neither good nor bad – they are just signs of me becoming the next version of myself. I remember how my prior injury and accompanying pain changed me into who I was, and now I am changing into who I am to become. As weird as it may seem, TN has opened my eyes to the fact that my life is always changing; I am always changing, growing and evolving and this is simply my next iteration.
Sharing my story to raise awareness – Day 58
Eight weeks ago if you asked me about Trigeminal Neuralgia I wouldn’t have been able to tell you anything past what I could decode from the words’ origins. I would have probably said that it must reference a set of three nerves, but I definitely wouldn’t have known the location of those nerves. In eight short weeks, so much has changed.
Like I said, pages and pages ago, I had no idea TN existed until it became a part of my life. I am actually very fortunate that my life’s events over the past 20 years have been what they are, as they have helped me identify TN, get a diagnosis, find experienced practitioners, create and begin a treatment plan, and most importantly find and hold hope in my head and my heart – all within these 8 short weeks.
There is currently no cure for TN. Do I wish there was one? Yes! Am I hoping that one is going to be found soon? Yes. I do not have all the answers, and I realize that I may never have all the answers. I think I will just have to be okay with not knowing some things. But here is what I do know about me and my TN:
- I am choosing to focus on investing my time and energy in the puzzle that is my life with TN.
- I am examining TN from all angles and all perspectives and looking at how the pieces may fit together for me.
- I am working to make sure that TN can be a part of my life – without it ripping my life apart.
Sharing my story has not been easy, as sometimes the truth that exists in my mind looks very different when I see it as words on a page. I know every TN warrior is different, with no two people experiencing TN the same way, and my story may not be something that others will connect with. But, if my story and my journey can resonate with even one person, sharing it will be worth it. If my story can make even one more person aware of Trigeminal Neuralgia, it will be worth it.
I have Trigeminal Neuralgia, and I have hope!
Links to more resources:
October is Facial Pain Awareness Month, and you can read more about it here: http://facialpainawarenessmonth.org/
Saturday, October 7, 2017 is Trigeminal Neuralgia Awareness Day, and you can learn more about TN here: Facial Pain Association: http://fpa-support.org/
You can visit the FPA | Official Trigeminal Neuralgia Network facebook page: https://www.facebook.com/groups/FPAnetwork/
If you want to learn more about Atlas Orthogonal Treatment please visit the Global AO: The Official Site of the Atlas Orthogonal Program: http://www.globalao.com
Here are the links to some of the local Northern California resources I have found:
- Image from: By Henry Vandyke Carter – Henry Gray (1918) Anatomy of the Human Body (See “Book” section below)Bartleby.com: Gray’s Anatomy, Plate 778, Public Domain, https://commons.wikimedia.org/w/index.php?curid=526568
- “‘Suicide disease’ man is pain-free after 20 years of suffering.” BBC News. July 06, 2013. http://www.bbc.com/news/uk-wales-23181650.
- “Why Trigeminal Neuralgia Is Considered The “Suicide Disease”.” Arizona Pain Specialists – Phoenix, Scottsdale, Glendale, Chandler. October 24, 2016. http://arizonapain.com/trigeminal-neuralgia-suicide-disease/.
- “Don’t let pain hold you back any longer.” The Suicide Disease – Trigeminal Neuralgia or Tic Douloureux | Articles | Information http://www.medfaxxinc.com/articles/the-suicide-disease-trigeminal-neuralgia-or-tic-douloureux.html.
- By Helmut Januschka (Helmut Januschka) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)], via Wikimedia Commons
- Image from: http://www.atlasdr.com/