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Trigeminal Neuralgia Situation

Posted by Scott Holstad on March 12, 2016

Okay. Update. This post is largely in response to a request from a reader. As many of you might remember, I have Trigeminal Neuralgia. For those of you unfamiliar with it, it’s a neuropathic disease which affects the trigeminal nerve, the largest nerve in the brain, causing unbelievable head and facial pain. Most scientists, doctors, neurologists, health care professionals, and patients widely consider it to be the most painful disease known to mankind. I’m not kidding. Google it. It’s also widely known as “the suicide disease.” I’m not kidding. Google it. Look at the Wikipedia entry. The last time I looked at it, it was there.

Not many people have it. Somewhere between 35,000 and 40,000 Americans have TN. That’s all. That’s why there’s virtually no R&D done on it. There’s no money to be made in it. There are two major types of TN: Type 1 and Type 2, often also referred to as Atypical TN. I have Type 2. It’s extremely rare. Only about 5,000 Americans have it. I’m one of about 5,000 Americans who have this rare, unbelievably painful facial disease.

The pain is hard to describe accurately. I can only under-describe it. Type 1 pain feels like sharp, electric shocks coming in quick, hard jolts through your face in 15, 20, 30, 40 second episodes over and over again for 30, 40 minutes, one hour, three hours, five hours, then maybe a break for awhile, then perhaps days, etc. It’s unrelenting. The electric shocks are supposed to be ungodly. I don’t experience these with Type 2. The pain usually centers in eye sockets, temples, cheeks, and jaws, although sometimes teeth and gums, as well as foreheads are also impacted. Sometimes even the back of the head. There are triggers. Eating, dental work, brushing your hair, wind, rain touching your skin, foul weather, anything brushing your skin, occasionally stress, it can be just about anything. Sometimes there’s no trigger.

Type 2 is different and a lot harder to diagnose. Instead of a series of short, sharp, insanely painful attacks, Type 2 people experience nonstop, usually all day, unrelenting dull, aching, yet also sharp (if that even makes sense), intense, otherworldly pain centering in similar locations. Allegedly, the pain is slightly less severe, but because it lasts virtually all day, every day, often for days, and in my case, weeks and months and even years, every day, I would assert that in some cases, such as mine, it’s much, much worse. You get no break. It’s horrible. It’s incapacitating. The first year I had it, beginning in the summer of 2010, through the summer of 2011, I spent most of my afternoons and evenings in bed, unable to function, able only to do things in the mornings when my pain was less intense, and even though I’ve not always been bedfast this whole time, I still schedule all of my appointments for early in the mornings and run all of my errands early in the mornings when I am able to, because by my early lunch, I’m usually in a great deal of pain and by after lunch and for the rest of the day, am unable to function as well as I would like, sometimes not at all.

There are treatments, medications, and some temporary surgeries, but only one possible cure, through a risky brain surgery. There aren’t any medications specifically for TN. There’s no money to be made in developing a medication for something that so few people have, so none of the companies have done so. Thus, neurologists and pain management specialists give out other types of medications for pain. The most commonly prescribed medication is Tegrotol, which I’m allergic to. The second one is Neurontin, which did nothing for me. Most TN patients are on incredibly high doses, usually well past the daily maximum recommended doses. Often they don’t get pain relief. Lyrica is another popular medication. There are many others. Sometimes people take Klonpin. I’ve taken that for years, but it does nothing for my pain. Two I take that have helped are Keppra and Topamax. After I started taking them together, I didn’t get a TN attack for some months and that was nice. Of course, there are often side effects and with those two, I had severe drowsiness for two months and fell asleep in my chair every morning and every night at 7:30 pm. It was annoying. Of course, most people with TN have extremely severe pain and these types of anti-seizure and anti-depressant medications only do so much. Sometimes people with 10 out of 10 on a 1-10 pain scale need something stronger. Unfortunately, as I’ve learned with some research, people with Type 1 are not helped with narcotics. People with Type 2 are. I have been taking narcotics since 2010. They used to help quite a bit. However, my pain levels increased threefold over a year and a half ago, and they ceased working like they used to and I had to start taking more and more for less than half the aid they once provided. This was annoying, in part because I didn’t even like taking them in the first place. Indeed, the first thing I normally do is take over the counter medications. I don’t even know why. They’re useless. I just don’t like to jump straight to the heavy stuff. I start with Advil, Tylenol, etc. Then move on to Excedrin Tension and Advil Migraine. Then I go to the prescription non-narcotics, such as Treximet, which used to help, and Sumatriptan and Naproxen, which has torn my stomach to shreds. Then it’s on to the heavy stuff. However, a couple of months ago, I had to bite the bullet and after five and a half years, admit with the help of four doctors and two pharmacists that I had reached my tolerance level and it was time to move up to something more powerful. When my pain management specialist gave me my prescription, I was horrified, because it was for a medication I’ve always heard about and had always heard negative things about and I’ve always heard it’s risky as hell to take this and indeed, when I did research, there were all sorts of warnings everywhere about it. I talked to another doctor and to two of my pharmacists and they assured me they thought it would be safe and good for me and would help me, so I got it filled and pondered things and several days later, started taking it, wondering what the hell would happen. Well, I’m still here. And it has helped. Some. I was hoping it would eliminate my pain, but it has not. I did further research and talked to my doctor and found out, it will not. My doctor told me their goal was to minimize my pain and restore my quality of life. Well, it’s definitely cut my pain, some of the time, perhaps even a lot of the time, certainly in the mornings, so that’s good. I’m also taking a second narcotic for “breakthrough pain” when needed, which is more often than I would prefer, but I’m still getting significant pain episodes, so it’s necessary. But less often than before.

So, what kind of procedures have I had and what are available? Well, I started out having Gasserian Ganglion Blocks. You have to be put out for those. They involve putting a needle through your cheek up through your mouth to your middle cranial cavity housing your V2 trigeminal nerve “tendril” (that’s what I call them) — there are three on each side, giving you sensations in three quadrants of your face on each side —  and anesthetizing the end of the nerve. They have to put you out because if you felt the needle connecting with that nerve end, the screaming would unnerve the entire hospital. Allegedly. I’ve had quite a few over the past five years now. Many don’t work at all. Not even for a day. Total waste of time and money. A couple have worked for several months. One worked for a year, so that was a good investment.

I’ve also had Botox injections, which haven’t helped me much. The longest any have helped my pain levels have been two weeks, reducing my pain about 50%. They’re supposed to help for 2-4 months, reducing your pain 100%. There are also steroid injections. Lately, I’ve been having Trigeminal Nerve Blocks, which I don’t think I’m reacting well to. With the last one I had, last week, I had significantly bad pain afterwards for three days. In fact, the third day afterwards was one of the most painful days of my life. It was absolute hell. If it were possible to rate pain over 10 out of a 1-10 scale, this would have been perhaps a 17. I couldn’t move, think, function, could barely talk, couldn’t read, nothing. None of my pain medications helped. I wanted to die. I actually thought about killing myself. Twice. That’s the first time in a very long time I’ve thought about that. It was horrific.

There are more major surgeries. There are four long term temporary surgeries, including Gamma Knife and Radiofrequency Ablation. I’m thinking of having a Balloon Compression surgery, which is long overdue. I finally made an appointment this week with a strongly recommended Nashville neurologist for next month to discuss this and other surgical options. Why Nashville? There’s only one group of neurosurgeons in Chattanooga and they’re idiots. I met with one last year for this same purpose. I told him my situation and he had never heard of TN Type 2. I was stunned. He didn’t know what it was. I explained it to him. He didn’t believe me. I had to provide documented proof. It’s his fucking field! I know it’s rare and only 5,000 people in the country have it, but if specialists in this field don’t even know of it, you’re pretty screwed. Indeed, I’ve been trying to find help elsewhere for sometime now. Last November, I went to Vanderbilt’s Neurology Headache Clinic. It was a waste of time. They didn’t do anything that my current, local neurologist wasn’t doing. I was turned down by the Mayo Clinic last month. I have no idea why. I’ve decided not to apply to Johns Hopkins. I don’t like their program. The Cleveland Clinic doesn’t even treat TN! Shit. What do you have to do? The one major, biggie surgery is called an MVD. It’s a brain surgery that involves cutting open the back of your skull, going in and rearranging the arteries around the trigeminal nerve and anything else that might be touching it and aggravating it, and if necessary, simply cutting it in half, which is a bit extreme. It used to take a long time to recover from, although that process and time length has really improved. It’s a risky surgery though. It used to be slightly lethal and some neurosurgeons were reluctant to do it. It still can be lethal. A little fewer than 0.05% of people (I think — could be a little wrong with that figure…) undergoing it die on the table. But most people consider it a worthwhile risk. Apparently, the more experienced the neurosurgeon, the better your chances of survival, so it’s in your best interest to find someone good. People travel all over the country to find someone good.

And why has my pain increased threefold? Well, over a year ago, I started getting extreme back pain out of nowhere. Since then I’ve been to my orthopedist and rheumatologist umpteen times, as well as physical therapy for six months, which did nothing at all. After getting all sorts of x-rays and other images and tests and whatnot, I found that I have severe curviture of the spine, spinal stenosis, massive amounts of osteo-arthitis throughout my entire body, worst of all in my hands and lower back, severe disc degeneration in my lower back, so much so that it’s bone on bone in the bottom of my spine and discs above that aren’t much better. I also have severe nerve damage in my lower back and a broken tailbone, as well as pain in my hips and legs stemming from my spinal and disc problems. I wrote a blog post about some of this not too long ago: CT Myleogram and Emergency Procedure. Additionally, about a year and a half ago, I started getting a new and different type of head pain. It was bilateral — TN is almost always unilateral — and felt different. It also wasn’t responsive to any of my procedures and not really to any of my medications, except occasionally to my narcotics. My then-new neurologist diagnosed me with three new head pain disorders: tension headaches, severe migraines, and cluster headaches. For those of you who don’t know what cluster headaches are, many scientists and doctors also feel that cluster headaches, like Trigeminal Neuralgia, are the most painful disorder known to mankind and they are also called “the suicide disease” by some. I don’t know how you reconcile the two, but in any case, I allegedly have both, so I’m totally screwed. However, my wife and I feel there’s a FIFTH undiagnosed, untreated head pain disorder that remains undiscovered that we’re really frustrated about that we feel my doctors aren’t really trying to find. Thus the desire to go out of town. The reason is, I’ve been given a ton of old and new, even experimental, migraine and headache medications and these headaches respond to absolutely none. Not one. They’re responded to no procedure. They’ve responded to nothing. At least the clusters often respond to TN treatments. So in our opinions, this can’t be a migraine. So what is it? So, Mom keeps asking when I’m going to have brain surgery. Like it’s nothing. Well, there are two reasons. First, Type 2s don’t respond nearly as well to any surgery, especially MVD. They just don’t and no one knows why. Second, even if I did respond well to an incredibly expensive, risky surgery and it eliminated my TN pain, I would still have my daily 10 level severe head pain and have to take my same pain medications and it would be pointless. Until this other head pain is diagnosed properly and treated, I see no point.

Surgeries. My back doctors are recommending back surgery to repair my nerve damage, a possible spinal fusion, surgery to remove my tailbone (which I refuse to have), and down the road, two probable hip replacement surgeries. Great. I already mentioned the balloon compression surgery for my head.

Get this. In the past three months, I’ve already had SEVEN minor surgical procedures! Seven. I’ve had four in the past three weeks alone. One was an emergency procedure for a procedure that went bad. I’ve had four procedures that have gone into my spine in the past two months. I can’t tell you how exhausted I am. I’m so tired out by all of these procedures, I don’t want to have another in a long damn time. But I probably will. That’s just how things work out.

I have Trigeminal Neuralgia Type 2. I have a shitload of other problems to contend with right now too. All seem and probably are serious. All are relatively debilitating in one form or another. I haven’t been able to work in over five years. I miss working in an office, doing something productive, interacting with co-workers. I miss having a social life. I feel badly that I can’t take Gretchen out on the town like I’d like to. I feel like I’m screwing her over badly. But she’s got a really good attitude and she’s incredibly supportive and I really couldn’t make it without her. She lets me talk and she listens. She offers input when I ask for it. She takes care of me. It’s damned nice of her. That’s true love. I’m very lucky to have her.

If you ever meet anyone with TN, I hope that this blog post will have helped you to understand their situation to a certain degree. I hope you will understand their feelings of helplessness and hopelessness. I hope you will be supportive. I hope you will say a kind word to them. Meanwhile, thanks for reading this, if you did. And have a good weekend.

 

5 Responses to “Trigeminal Neuralgia Situation”

  1. Kathryn said

    HI: thank you for sharing your experiences and history. It was very informative. I too have type 2, but it is almost the least of my problems. I have been diagnosed with Temporal Arteritis which also causes excruciating headaches and face pain. I also have Fibromyalgia. All of which are much worse in the cold winter months here in Ontario Canada. I have spent almost half of the last 8 months in hospital, and now that I am home, I feel like I am going steadily downhill. For one thing, I have lost too much weight from barely being able to eat: meals are torture. Now I am anemic etc etc and barely have any strength to walk around the house. I could go on and on 😦 The years ahead do not look good. It’s hard to hang on.

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    • Hi Kathryn,

      Thanks for your comment and for sharing. I’m truly sorry for your afflictions. As you can tell from mine, I feel like I can relate. I, too, had anemia quite badly, although I seem to have recently gotten rid of it somehow. I’ve been trying to lose weight throw an extremely low carb diet. In the past 13 months, I’ve lost 90 pounds. Absolutely not the same as losing without trying, but still, I’m having to make adjustments that I hadn’t had to make before. I’m sorry about your many pain-filled disorders. I understand pain. As I’m sure you do, I live with it daily, in extreme. I’m sorry that your cold weather can aggravate your situation. Meals, for me, can sometimes be rough. Eating in general can be a trigger for TN. It’s resulted in serious TN attacks before. Chewing, too, can do the same thing. I certainly will be keeping you in my thoughts and prayers and wishing you well. That’s about the best I can do. Best of luck to you.

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  2. Both you and SweetG. continue to be in my thoughts and prayers.
    You are an inspiration to me, Scott…as I battle my health issues. I admire the fight you have in you as you battle such overwhelming health issues.
    Hope you can hang on!
    ((((HUGS))))

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  3. Scott: Here is a story about my sisters best friends daughter I thought you could post.

    About two years ago I started to have pain on the right side of my face along my jaw line. At the time my father deiced to change dentists. When I had my first appointment at the new dentist (Dr. English), on the 31st of October, 2012, he found 13 cavities that my old dentist missed. In November of 2012, I started the process for fixing those cavities.
    At the start of December of 2012, I started having pain again on my right side along the jaw. Dr. English then took out my filling in the second to last molar on the lower right side (tooth number 18). As soon as the filling process was complete I started to have an extreme amount of pain and a lot of heat in my face. After some searching, Dr. English found that my tooth was fractured.
    The next day, I was in more pain, so Dr. English had me come in so he could look at things again. After looking around, he decided that the best option for me was to have a root canal. He performed the root canal that day. The next few days were rocky, but I was doing ok.
    Then two weeks after the root canal I stated having the same pain, so Dr. English sent me to an endodontist. When I saw the endodontist, he decided that it would be best for me to have the whole root canal taken out and start over. A few weeks later I went and saw him again because I was having similar pain in the same spot. After some testing, the endodontist concluded that I needed a second root canal, this time on the last molar on the lower right side (tooth number 17).
    I was doing ok for the next few months, I would have occasional pain on the lower right side, but it was manageable. In April of 2013 the endodontist was finishing his two root canals because he wanted time for the medications he put within the canals to have time to help things heal before we finished them and sealed the canal off. At the end of April and beginning or May, the pain in my jaw came back. My dentist sent me back to the endodontist because he had no reason for why my pain was picking back up. The endodontist redid the root canal on tooth number 18, which did not help.
    At the start of June in 2013, I was going camping for a week and the pain was getting worse. During camp I was rotating Vicodin and prescription strength ibuprofen every three to three and a half hours. One of the adults that was at the camping trip was an oncologist. He felt around my jaw and lymph nodes. He thought that I had an infected lymph node, and that I needed to go and see the endodontist again to make sure everything was fine with my root canals. I left camp early and started antibiotics. I also went and saw the endodontist, that summer I has each of te root canals redone 4 times, in all I had 8 root canals, and during the summer I was on vicdin, vicoprofen, morphine, Percocet, and oxycodone just for the pain and different antibiotics to help get any infections out of my system.
    At the end of June, my mom took me in to see my primary physician. We told him what all was going on and he started me on the lowest dose of gabapentin, 100 mg. The gabapentin was not helping what so ever. I went back in to see Dr. English and he thought that removing my last molar was the next step to see if I could find some relief. We removed it and we found no relief from pain. At the end of July my mom took me back in to me doctor, and he referred me to see neurology at St. Louis children’s hospital because he did not feel that he should go up on the gabapentin because of my age and he didn’t have a lot of experience with it. At this point my doctor and dentist both agreed that it was looking like trigeminal neuralgia.
    My junior year of high school started with no relief from my pain. By the end of August, I was leaving school early because of the amount of pain I was in. My mom then decided to take matters into her own hands because we could not see a neurologist until October. She called my doctor’s office and our health insurance to see if it was a good idea to take me to the ER. They both agreed that it was ok. I was admitted overnight just for observation, and was seen and assigned a neurologist (Dr. Faye). At the hospital Dr. Faye started me on oxcarbazepine, which over the next few months I ramped up my dose to 600 mg in the morning and 900 mg in the evening. Dr. Faye hoped to get me up to 1500 mg twice a day, but my body had a hard time handling the side effects of the medication. They also started me on amitriptyline at night which then had to be switched to nortriptyline at night because of side effects.
    At the start of November 2013, I saw Dr. Faye for a checkup, and he started me on gabapentin and sent me to see children’s pain management services. At pain management, in mid-November, they changed the oxcarbazepine to carbamazepine. At this point I was on the carbamazepine, nortriptyline, and the gabapentin. A week before I saw pain management I was hospitalized for four days with left flank pain and a high heart rate. During that hospital stay, the doctors could not find anything wrong, so they sent me home.
    The pain management serveries at children’s sent me to see a pain management doctor at the adult hospital that they partner with for a possible nerve block. I saw the0.111 doctor who specialized in facial pain. When we saw him in December of 2013, he started me on Lyrica and Cymbalta and took me off of all of the other medications. He also decided that I was eligible for a nerve block. I also stopped taking the carbamazepine because it was not helping and make my stomach hurt. I had the block about three weeks later. The day that I went in for the block, we let the doctor know that the Lyrica was working really well, and that I was sleeping better at night. They proceeded with the nerve block. I was doing ok for the first two days, but after that my pain got a lot worse. Every day before the block I was at a 7 or 8, after the block I was at a steady 10. I missed about the first three weeks of my winter semester at school because I could not manage the pain and I wasn’t sleeping very well at night. Because I was doing so badly, I had to go and see the pain management doctor that preformed the block. He took me off of the Lyrica because it was not helping anymore and put me on baclofen.
    In February of 2014, I was hospitalized a gain because of the same left flank pain and fever; however, this time, my heart rate was very high, but my blood pressure was very low. They ran test again and could find nothing wrong. Pain management at children’s then told us that the flank pain was connected with my jaw pain because my nervous system was on over drive. To help with all of this they suggested that I get as active as possible and that I needed to go back to school full time. This was very hard for me because anytime my heart rate would increase, so would my pain, and the stress of school made my pain worse and just the environment of school made my pain worse. Cold winds made my face pain worse, along with anything with heat, and any type of touching.
    In mid-March of 2014, I was hospitalized again, but this time it was for the amount of pain I was in and I had been vomiting, nauseated for about two weeks. Over all the main reason for the hospitalization was the amount of pain I was in. I was seen by a team of pain management doctors who were quite upset that I was back in the hospital. Dr. Faye was the one that suggested that we come into the ER and who asked if I wanted to spend the night in the hospital just to see if pain management could help me get my pain under control. Pain management just wanted me back in school full time and to be active, they really did not try to help. Dr. Faye, however, started me on lamictal.
    While I stayed in the hospital these four times they did X-rays, CT and MRI scans of my face, along with x-rays, CT and MRI scans for my abdomen and back. These scans all look normal.
    At this point, my symptoms were facial pain along the right jaw, sensitivity to temperature, touching, and wind, and the upper part of my face just under my right eye would get red and very hot. My parents could touch the same place on both sides of my face and could feel a temperature difference, and they could see the redness in just the right side.
    In the mid- March, after the last hospitalization, my parents also noticed that my right eye was drooping, and it was harder for me to close it. At the same time, I noticed that my pain began to spread to the middle part of the right side of my face.
    We called Dr. Faye to let him know of my new symptoms. He saw me the next day to make sure everything was ok with my eye and he and his co-works agreed that my pain had spread and we were able to show them what my face looks like when it turns red.
    In April, I heard from a family friend about Calmare treatments. My mom and I were able to talk to someone from the company and talk about what exactly this would do for me. We decided that it was worth a try since we had tried acupuncture, medications, a never block all gave little to no relief. My doctors were also talking about a shot that they would give me in my neck to help with the redness and heat, they also wanted me to see a doctor about Botox. We weighed our options, and we really liked the idea of noninvasive with no side effects, instead of being on medications that were not helping r getting injected with things that may not even work.
    We also found out that vicoprofen actually helped bring the pain down a few levels when I could actually take it. I could not take it during school hours or when I thought that I was going to have to drive, so I could only take it in the evenings and at night.
    In May, my mom talked to Calmare and set up appointments for me starting in June. I was going to be in Utah for a week long church camp so we figured that I could go and try it out since I was out there. If it worked I would stay in Utah until I was done, and if it didn’t I would come home. She also talked to them about getting off my medications. We talked with Dr. Faye and worked out a schedule so that I could be off all of my medications with two weeks free of the meds. before my treatment. This was harder than I originally thought because I knew the meds. were not helping a lot, but I also liked sleep. The first week that I was free of all of my medications was the week of second semester finals. I was taking 9 mg of melatonin just to sleep, and the pain was up to a 10 most days. I was told not to take anything because it might interfere with what would happen at treatment, and I wanted the best results. The second week without meds. was a lot easier than the first because I had a great distraction. At the church camp, everything was planned out and we were doing something every second of the day. Now that doesn’t mean I didn’t feel it. To help with the pain, I would use ice. It helped numb everything for a little while. It was not a significant difference, but I want to still be able to enjoy the camp and do things. The only downside to the ice was that it would take a long time for it to actually numb my face. They had a dance one night, and I was able to have fun and dance with my friends for about an hour, then I went and iced my face for another hour.
    On June 2, 2014, I went to Pleasant Grove and saw Dr. Bingham. Within my first treatment I went from a 9 or a 10 down to a 0. It was wonderful, it had been about two years since I had no pain, and the pain did not come back for 3 to 4 hours afterwards. The next day I went back and the pain went right back to a 0, and the pain did not come back for 4 to 5 hours. This pattern continued, I would go in and my pain would go down to 0 and stay away for long amounts of time after each treatment. When I would go in each day for treatment my pain would me lower too. Unfortunately, there were a few days of treatment that I would go down to a 0, but the pain would stay the same when the pain would come back after treatment. I started to worry that Calmare was not working anymore, or that it was slowly causing more pain to come back. That did not happen! It just took a little longer for my body to accept the treatment. I received 17 treatments, but I technically did not finish treatment. On the 23 of June I had an appointment to see Dr. Faye, and those appointments are very hard to reschedule because it takes so long to get in. I talked to Dr. Bingham about leaving earlier than we planned, and he said that he thought that would be ok. On the 21 of June, I had my last treatment. Dr. Bingham told me that I may live anywhere from a 1 to a 2, but I can manage it. I would take living at a 1 or a 2 any day over a 9 or a 10.
    When I saw Dr. Faye he was amazed and so happy that Calmare worked. He told my mother and me that he actually thinks that I may have Reflex sympathetic dystrophy syndrome (RSDS) because I was in constant pain and the color change in my face.
    I have been home about two weeks now, and I am doing great. I am able to go boating and tubing with my family again this summer! I can drive with the windows down, and I can sleep on that side. I am sleeping without any medications to put me to sleep too.
    Calmare is a great treatment option, it allowed me to get off of all of my medications, it has no side effects, and it is noninvasive.

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