hankrules2011

A polymath rambling about virtually anything

Posts Tagged ‘headaches’

Go a Few Rounds With Your Brain’s Nerves: Welcome to TN Type2 Hell!

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.

 

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CT Myleogram and Emergency Procedure

Posted by Scott Holstad on February 13, 2016

I’ve had a rough time of it lately, especially the past few days. A couple of weeks ago, I somehow injured my back. It locked up and I had incredible back pain to go along with my very severe head pain. I went to my orthopedist, had a lot of x-rays taken, was told I hadn’t fractured my back (good), but that my degenerative disk disease had gotten a lot worse. That my bottom disk had effectively disintegrated and it was largely just bone on bone now and that was why I was hearing all of the clicking and grating sounds when I moved, and why I felt my spine shifting when I moved. The disk above it wasn’t much better and together, they couldn’t have been “much worse.” My doctor decided to send me to have a procedure at a surgery center called a “CT Myleogram,” which I had never heard of before and which didn’t sound like a big deal. After all, I had had a number of CT scans, so no biggie, right?

Well, when I got home and did some research, I found out what these procedures were, to a certain degree, and they were a little more involved than that. They were basically like reverse spinal taps, where instead of inserting a needle into your spine and removing spinal fluid, they’re inserting a needle into your spine and injecting contrasting fluid into it so that they can take moving x-rays and CT scans so they can detect nerve damage and other types of damage regular x-rays can’t see. No anesthesia, of course. And I had just had a spinal tap last month. So, yay. This was last Monday. They called me Tuesday and scheduled me for Wednesday, a few days ago.

My wife took me in and dropped me off. She’s had to take me to so many procedures lately and has had to wait that it’s just gotten old and she’s worried about losing her job, so she just wants to drop me off and pick me up when she’s allowed and I was supposed to wait in Recovery for 2-4 hours after the procedure before she could pick me up. I had the procedure and it wasn’t that bad. It didn’t last as long as a normal spinal tap, although with the x-rays and CT scan, the entire process made it last much longer, of course. And I only had to wait after for a couple of hours or so. They warned me several times about something called a “spinal headache” and said it could be very severe. I basically laughed it off because with my Trigeminal Neuralgia, tension headaches, severe migraines, and cluster headaches, how could it possibly be that severe? Even if I got it, which I didn’t think I would. Because you basically got it from leaking spinal fluid from a puncture that wasn’t healing and it wouldn’t be healing because you stood too much and didn’t lie down enough and I planned to lie down. But I didn’t. I thought I did, but I didn’t. I sat at the dining room table to eat a late lunch when I got home. I sat at my computer to check email, etc, after that. I laid down for a bit, but then I stood for awhile to do dishes. I laid down some more. Oh, I felt pretty good, by the way. I felt fine. I sat again to have dinner. But by then, I was starting to get, yes, a headache. I assumed, however, it was my usual TN acting up and didn’t really think anything of it. I took my usual medications, but by late afternoon, I had an increasingly severe headache that was starting to get very, very bad. I went to bed with a bad headache and got virtually no sleep. By Thursday morning, it was brutal. I got no sleep, like I said. My right eye socket felt dead. The right side of my head was on fire. The back of my head felt like it had been hit by a machine gun. My forehead hurt, so did my cheek and jaw. My ear lobe felt numb, so did my teeth and tongue. My temple was killing me! I wanted to die. And my back was hurting from my procedure. This was probably the worst pain of my life. On a 1-10 scale, this was easily a 15. Throughout the day, I took 6 Tx, 8 Ex, 2 Nx, 14 Ax, a Px, and 2 Mx. I started feeling better during mid-afternoon but started getting worse again before dinner. My pain level got down to maybe a 10/10, but that didn’t last long. And this got worse! I didn’t know what to do! My pain level reached a 17 out 10, if that’s even possible! Ungodly! Worst ever. Finally around 9 pm Thursday, I called the surgery center and got patched through to a live doctor. She said I had two options. One, I could go to the ER, but Gretchen had taken a sleeping pill and was going to bed and I couldn’t drive. Two, I could stay up and take lots of anti-inflammatories and drink lots of caffeine and go back to the surgery center in the morning to get an emergency “blood patch” procedure, where they drain a lot of blood from your arm and then inject it through one of two needles inserted into your spine, like a reverse spinal tap, similar to what I had two days previously. That’s two reverse spinal taps in three days. That’s harsh. And that’s what I did. I stayed up all night drinking coffee and Coke Zero and taking what pain pills I could and when Gretchen got up, this doctor called me and told me they were expecting me at the surgery center, so Gretchen took me there. When I went into the operating room, they had five people in there: the doctor to handle the two needles, the technician to operate the x-ray machine, which I got to watch live, the person to handle my blood and its needle/IV, and two people to massage me, one my arms above my head, one my legs, I guess in an effort to comfort me because of my pain and discomfort level. It was almost funny, as I’ve never had that happen to me before, but it was oddly comforting. This procedure lasted about an hour and hurt like a fucking bitch! Holy shit, it hurt! The doctor dug those needles into my spine hard over and over again repeatedly, gouging the shit out of my spine. Finally it was over. I was proud of the fact that I didn’t even wince once. They asked me how I felt immediately after but I didn’t know. I said I needed some time to evaluate. After awhile I realized my head pain had largely disappeared, including my eye socket pain, and I told them that and they were pleased. I was a little shocked. I guess I did have a spinal headache but I never knew they could be so damn bad. It was just about the worst head pain I’ve ever felt. Now I’ve got a 0 out of 10 head pain since 11:30 am yesterday and that’s awesome. I wonder how long this will last? Unfortunately my back hurts pretty badly from all the trauma it’s had to endure over the past few days. Hurts a lot. Hopefully that will improve fairly quickly. I’m glad they insisted I come in Friday morning rather than going through the weekend. That would have been a disaster. Getting the disgusting, painful blood patch was one of the best things I ever did.

So, that’s where I’ve been the past few days. Sorry I’ve been out of touch. I’ve truly not been feeling well. I have four books stacked up to write reviews for, but I really haven’t felt like it. I don’t know when I’ll get to those. I hope everyone has a nice Valentine’s Day. Ours will be low key, unfortunately. Frankly, I’m just glad to be okay.

 

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Lumbar Puncture

Posted by Scott Holstad on January 15, 2016

Hi! I had my lumbar puncture/spinal tap yesterday. Sorry I didn’t post, but I was bedfast for the entire day, per the hospital’s instructions. It went ok, actually much better than the one I had done in 2011. They’ve improved the procedure, made it much faster, less painful. In fact, even though two surgery nurses had told me the day before that I’d be having anesthesia, to my shock, I received none and no pain medications either! I thought, what the hell? It’s a damn spinal tap!!! However, once they went in, after the initial needle went into my spine, which did hurt quite a bit, things settled down and I could hardly tell anything was happening, which was quite different from last time, so I guess I didn’t need it. It took about a third of the time as the previous one, which was great. After it was done, I was supposed to lie flat in bed at the hospital for 2-4 hours, but they let me go before 2 hours had gone by. But I had to go straight home and lie down flat on my back all day and night, except for bathroom and eating breaks. Since I didn’t get to eat much for such a long period (I had had to fast from midnight and my procedure wasn’t until 10, even though I had to be there at 7:30 AM), I just weighed myself and found I lost three more pounds and I’m at my lightest weight since my major surgery weight of December 2011 and just 23 pounds from my ultimate goal. That’s cool. (That’s now a little over 80 pounds lost overall!) However, when it’s all said and done, it was a disappointment, because we did not get the result we were hoping for. We were looking for a specific spinal fluid pressure and this time it was even lower than last time and we were sure it would be higher — and it would have had to be higher to be what we expected it to be to explain all this damn pain. So we may be back at square one. Except … there’s one last hope. If you have this disorder, the spinal tap is supposed to relieve your pain. If you have no head pain for awhile, that’s a good sign. So, my head pain basically disappeared yesterday and so far this morning, although it’s only 3:00 AM and a lot can change, no headache. So, I’m holding out hope that even though the spinal fluid pressure didn’t indicate it, it still exists and the pain will have dissipated and that will explain everything. Oh God, please…. I meet with my neurologist on Wednesday, the day after I meet with my orthopedist and my pain management specialist, all of whom will be interested in the results. Here’s hoping. Thanks for thinking of me, those of you who did. Cheers!

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End of the Year Post 2015

Posted by Scott Holstad on December 31, 2015

I wrote this blog post quite early this morning and didn’t post it. I wasn’t sure about it. Since then, I’ve reread it twice and have had second thoughts about posting it. I usually post an End of Year post on the last day of the year, but this one is too depressing, too negative. I don’t think I want to be a downer for my readers. Nonetheless, I’ve decided to post it after all, although I’m not sure it’s a great idea. It does, however, describe my year, which is my intent. If you’re not interested in reading a depressing or negative post, feel free to skip this one. No hard feelings. If you’re interested at all, feel free to read it though. Hopefully 2016 will be better for me/us and hopefully all of you will have a good 2016. Happy New Year!

 

On the last day of each year, I write a year in review post. Here are the links to the 2014 Year in Review blog post and the 2012 End of the Year blog post. I had a lot going on in both years. If you read them, you’ll note I had some health problems, particularly last year. Well, I’m about to write an abbreviated post for 2015. It’s abbreviated because this year was largely a personal disaster due to hideous, nightmarish health and pain problems and I/we didn’t really get to do very much at all.

In January, my mother celebrated her 85th birthday. Although she’s had a couple of bad falls this year with broken bones, she still is relatively good health and living alone in a condo in Knoxville, TN.

In February, I developed severe back pain to accompany my head and facial pain, out of the blue. It took time, but over the course of the year, I sought treatment from my orthopedist and a rheumatologist, as well as physical therapists. It seems I have spinal stenosis, degenerative disk disease, massive osteo-arthritis throughout my entire body, and a broken tailbone. They’re recommending surgery to remove my tailbone, probable spinal fusion surgery, and down the road, two hip replacement surgeries. My pain has been at about a 9.6 out of 10 level every day this year and virtually no pain medication helps.

About the same time, my head pain increased and got worse. My Trigeminal Neuralgia was joined by at least one, perhaps two, other types of head pain, which I have been trying to have diagnosed and treated all year, with little help. My two types of head and facial pain have been at a 9.6 out of 10 level every day, virtually all day all year long with virtually no relief from any pain medication. Any pain medication that used to be helpful is no longer useful. I now have three new diagnoses for additional types of head pain disorders, all three of which can be extremely painful, one of which is supposed to be the most painful condition known to mankind. I don’t know. My wife and I are convinced there’s another undiagnosed condition that has yet to be treated, since I’m responding to no treatment.

Since this spring, my longtime insomnia has worsened. I am averaging about three hours of sleep a night and am now, in fact, waking up and getting up between 11 PM and 12:30 AM. It sounds insane, but it’s true. That means I go to bed early, but I still get only two to three hours of sleep. I also can no longer successfully nap. I started falling asleep at red lights while out driving, and in chairs sitting up, and at doctor’s offices, and at church dinners, and my wife and I suspect I may have narcolepsy so I have an appointment with my sleep doctor in a few weeks to discuss this.

During the spring, somehow I was able to get to some of the concerts I was able to buy tickets for 2014 Christmas for my wife. Because of my health problems, we unfortunately had to blow some off and waste that money, but we did get to see Lewis Black, Weird Al Yankovic, The Who (which was awesome), and Barry Manilow, which was pretty much the highlight of my wife’s life. We blew tickets to Chicago and a Pittsburgh Penguins game. Oh well. We had good times.

In April, we celebrated our second wedding anniversary. It was pretty low key. It feels like we’ve been together for so much longer than that. We have a wonderful relationship and I’m very lucky to have Gretchen for a wife and best friend. April is also Gretchen’s birthday and so that was pleasant, although she’s not thrilled about getting older. I keep telling her she looks and acts infinitely younger than she is, looks at least 10 years younger than other women her age. I think she knows that intellectually, but still is annoyed with aging. I think she’s still sexy as hell. She always will be.

In July, I started going to a new neurologist who I didn’t like personally very much, but who, to his credit, did try some new things. He’s an egomaniac, but then many doctors are, I suppose. He’s given me a couple of Botox injection treatments so far and has tried a number of new medications on me, none of which have helped, but at least he’s trying.

Also, in July my head pain got even worse, if possible. Since I’m up 21 hours a day on average, it became 21 hours of pain a day, every day, without break. At a near 10 out of 10 scale, which combined with my back pain made life nearly unendurable. I applied to get into Vanderbilt’s Neurology Headache Clinic, which has a good reputation, thinking that after nearly six years of treatment in Chattanooga and only getting worse, I need to go elsewhere if I’m going to get better. July was also the second anniversary of my father’s death. It was a sad occasion.

I had my birthday in September. I suppose it was low key, as I remember nothing about it. This fall has been largely a blur, due to my pain status. I’ve been super focused, while also at the same time, largely oblivious. If that makes any sense. I particularly enjoy September and October because of sports. You have college football, the NFL, baseball, hockey just starting, college basketball just around the corner. It’s pretty awesome. I enjoyed watching my Pirates make the playoffs for the third straight year, watching my Tennessee Vols have a frustrating but ultimately successful 8-4 bowl year and my UCLA team have a winning bowl year, my Steelers have a injury-plagued year in which they still have a minor chance of making the playoffs and the hockey season, in which we paid for a year of NHL Gamecenter Live, in which you can watch any game you want – not on national TV – live for a one time set price. So I get to watch my Penguins quite often. If only they were playing up to their expectations and potential. It’s been disappointing so far. Of course, the UT Lady Vols are doing well so far, but they’ve had so many injuries, they’ve only been able to dress seven players lately, so it’s only a matter of time until they start losing many games and the men’s Vols basketball team has a great new coach, but not much talent while my Long Beach State team is having a rough year getting beat up by major teams like Duke.

In October, I finally got to go to Vandy. I was instructed to bring my medical records, so I spent two weeks and hundreds of my own dollars getting them, Gretchen took a vacation day, we drove six hours two ways, went to Nashville and met with a doctor who didn’t even want to look at my records, said they weren’t important, didn’t want to discuss my background with me, spent perhaps 15-20 minutes with me, prescribed a useless migraine medication for me, said I needed Botox immediately (so they scheduled me for three and a half months away) and, when Gretchen asked if we couldn’t just get this done in Chattanooga, reacted angrily and said it had to be done there. We left pretty ticked off at what waste of time and effort that was. I haven’t canceled my next appointment there yet, but I will. There’s no point in going. Meanwhile, my mom has stepped up to the plate and said she’ll pay for me to go anywhere to help get me fixed, cured, whatever. So, I’ve been researching Mayo, Johns Hopkins, the Cleveland Clinic, UCLA, etc. So far, Johns Hopkins would be convenient because that’s where Gretchen’s family lives, but Mayo seems most impressive by far. I’m not going to pursue it just yet though. Want to exhaust things here in town first.

In November, we traveled to Maryland to visit Gretchen’s parents, sons, and friends. It was a difficult trip for me health wise, but she had been wanting to go for months and we hadn’t been up there for a year and a half, so it was time. And we had a good time over Thanksgiving. It was good to see everyone. We also celebrated our one year anniversary of getting our kitten, Ace, who has become Gretchen’s baby. He’s now about 16 months old, and Henry just turned 10 years old, which is unreal because I can remember when he was just a month old, but they get along much better now and Ace is calming down a little bit finally. But just a little bit. Ace is also the most social, codependent cat I’ve ever seen in my whole life! He needs to be with people like nothing I’ve ever seen. He needs to be held. When we went to Maryland, we hired petsitters to come to the house twice a day to help mostly Ace. Henry is pretty independent and I’ve left him by himself for a good three days or so, but Ace couldn’t take even one day, I’m sure. It’s kind of sad. Cute, but sad. Nonetheless, we love them both and they add to our lives tremendously.

This month, we celebrated our five year anniversary of when we started dating. That’s always an exciting occasion for us and fun to remember. We also had a very subdued Christmas, which was somewhat anticlimactic. My pain was so severe and I was on so much pain medication, it was virtually impossible for me to function at all. My mother drove down from Knoxville to be with us on Christmas day and we exchanged a few gifts, nothing like last year. We couldn’t put up our tree this year like we’ve done in the past because of Ace. He goes wild. We put up a mini-tree we bought, with some lights and ornaments. That was destroyed the first night. We put up an old ceramic tree with plastic lights I’ve had for decades, but Gretchen thought better of it, so she got a little wooden tree with a string of lights and that was our tree. We didn’t even put presents out until the night before because Ace would destroy them. We try to control him, but we really can’t.

One year-long note. Early this year I was forced to drop my Obamacare and start using my Medicare I got last year when I went on disability. I had no idea how that would change my life. It’s been a nightmare. Medicare Part D is a freaking nightmare from hell! With Obamacare and BCBS, my monthly medical bills came to roughly $400 a month. With Medicare, I was quickly paying up to as much as $2,800 a month in medical bills, almost all of it prescriptions. One of my prescriptions alone had a co-pay of $800! That’s fucking insane! That total is more than double my disability check. How the hell am I supposed to pay for that? And I have no choice. As long as I’m on disability – and there’s no way I can work – I have to be on Medicare and as long as I’m on Medicare, I’m stuck paying thousands a month for medical/prescription bills. It’s unfair and cruel and I resent it like hell. It’s practically ruined my life even more. Thanks for the added stress, government. Thanks for practically bankrupting me. Appreciate it.

Well, I guess that’s about it for 2015. It was truly a horrible year. Probably worse than 2011, perhaps. I don’t know that 2016 will be any better, but I’m hoping it will be because we intend to aggressively pursue medical treatments for my back and head and solutions and ways to diminish and end my pain. I don’t know if that’s possible or reasonable, but dammit, we’ve got to try. My wife, meanwhile, has her good job, although without insurance, and Obamacare just doubled her premium, so we can no longer afford it, so that’s just great. So she’s actually thinking about looking for a new job next year, which would mean leaving her nice, cushy job that’s so great otherwise. Pity. I hope anyone reading this has a pleasant New Year and a wonderful 2016. Cheers!

 

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Minor Surgery on Monday

Posted by Scott Holstad on December 18, 2015

I’m having a minor neurological surgical procedure Monday morning to hopefully relieve some Trigeminal Neuralgia-related head and facial pain I’ve been having. This will be at least my eighth such procedure since summer 2011. Some have worked and some haven’t. I had three last year and none of them worked at all, but one I had in 2012 worked for nearly a year. However, no matter how successful this is, I don’t think it will help my overall pain level that much and that is frustrating. Let me explain.

For the past year, I have been in a great deal of pain. I have had Trigeminal Neuralgia Type 2 since September 2010, but it had improved with surgical procedures and medication. However, about a year or more ago, I started getting another type of head pain, a bizarre almost normal, but incredibly severe, headache that responded to virtually no pain medication whatsoever and attacked me at all hours of the day. Since I have severe insomnia and average about three hours of sleep a night, this meant I have been having 9-10 out of 10 pain levels 20-21 hours a day every day for a year or more. Combine that with the occasional and increasingly frequent TN facial attacks, which are 10/10 minimum, and it’s agonizing. To make matters worse, about 10 months ago, out of the blue, I developed agonizing back pain. It was also 9-10 out of 10 pain, daily, for nearly the whole day. I’ve had some back problems for the past three years, but they haven’t bothered me a great deal, at least not without some movement, and this was just from sitting or standing or doing nothing at all. It was bizarre. Nothing helped. So between the two to three types of pain — head, facial, and back, all 9-10 out of 10 — it’s been a damned brutal year. I went to my orthopaedist some time back and she took x-rays and looked again at my old MRI and sent me to physical therapy. I also went to a rheumatologist I had to wait seven months for an appointment for. She did extensive testing and took more x-rays and between the two of them, they informed me that I have spinal stenosis, which I knew, degenerative disk disease, which I also knew, massive amounts of osteo-arthritis throughout my entire body, and a broken tailbone, which explained the coccyx problems I had been having awhile ago. I was told I would need to have my tailbone removed via surgery, although three of my other doctors have strongly recommended I not do this, that I’ll probably have to have two hip replacement surgeries in the not too distant future and there’s also a decent chance I may have to have spinal fusion surgery. Great. After four months of physical therapy with virtually no progress and pain still at 9/10 out of 10, my doctor sent me back for four more months, which is where I’m at now. If PT doesn’t end up significantly reducing my pain, it’ll probably be surgery and I really am not looking forward to that.

Meanwhile, back to my head pain. I have been to several doctors, including my main doctor, my pain management specialist, a neurosurgeon, and a few neurologists in different cities and I have four head pain diagnoses. In addition to TN, these include tension headaches, severe migraine headaches, and cluster headaches. For those of you who don’t know, Trigeminal Neuralgia is extremely rare and extremely painful. I believe only about 40,000 Americans have it and only about 10,000 have Type 2, which I have. It’s hard to diagnose and harder to treat. It’s also considered by many to be the most painful disorder known to mankind. Look it up. The last time I looked at Wikipedia, it referred to it as “the suicide disease.” Likewise, the cluster headache is ALSO considered by many to be the most painful disorder known to mankind. I guess it depends on what your resource is. But look it up. So I’m essentially doubly cursed and basically screwed. And the thing is, I don’t think that’s all of it. I think there’s more that they’re missing. I know there are a number of rare neurological head pain disorders, many TN-related, which go undiagnosed, that could more realistically explain my head pain. Cause I’m possibly willing to believe cluster headaches and I know I have tension headaches, but I’m not willing to believe severe migraines are causing the kind of 21 hour a day daily head pain I’ve been having for a year, as the head pain isn’t consistent with typical migraine characteristics and responds to absolutely no migraine medications I’ve been given. None. So I think it’s something else. But my doctors are reluctant to go that route. One former neurologist thought I might have something called Pseudotumor Ceribri and I had to have a spinal tap to test it. I was very, very close but he decided I did not. My present, local neurologist is giving me Botox injection treatments, which is common and expensive, and next month may give me facial steroid injection treatments, but after that and one more Botox treatment, if I don’t respond, he too may send me for a lumbar puncture to see if it’s that. I don’t want that but am willing to undergo that again just to see.

In the meantime, on Monday I have to go back into the operating room. It won’t take long, maybe 45 minutes. A few hours in recovery. Outpatient, home by mid-afternoon. Unfortunately, my wife has to take a lot of time off from work since I obviously can’t drive myself due to the anesthesia. And it always takes a long time for it to wear off for me. Like a week. I will drag all week. That sucks. But hopefully it will help some, because lately I’ve had quite a few vicious TN attacks and that’s got to stop. Cause I’ve got to focus on getting rid of all of this other shit. Please wish me luck. I definitely need it.

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Vanderbilt Neurology Headache Clinic Visit Outcome

Posted by Scott Holstad on November 14, 2015

As I may have mentioned, I have spent several months trying to get into Vandy’s Headache Clinic before finally finding out I was accepted and getting an appointment. It was for this past Thursday. I was both excited and nervous.

Some background. In September 2010, I started getting horrific headaches that I thought were severe migraines, but they didn’t go away and only got worse. My quality of life lessened and they became incapacitating. Eventually, I had massively severe head and facial pain, largely unilateral, which worsened as the day progressed, each day, and I was only functional in the mornings, having to spend the rest of the day in bed. I tried all sorts of pain medications, mostly over the counter and prescription migraine, but the only one that ever helped at all was Percocet. In February 2011, I quit my job. I could no longer function. By that point, I was busy going to all sorts of doctors, dentists, chiropractors, etc., et al, in morning appointments, all over town, trying to find a diagnosis and cure for my condition. The pain was ungodly. Virtually everyone I went to threw their hands up into the air and said they didn’t know, they couldn’t help me. One neurologist I went to had me undergo a lumbar puncture to test me for pseudotumor cerebri. I needed a “score” (spinal fluid pressure) of 20 to have it and I got a 19, right on the cusp, so he concluded I did not and then said he couldn’t help me. So I went to yet another neurologist. He tried a few things and nothing worked, so he sent me to a pain management specialist. In the meantime, my psychiatrist asked if anyone had suggested trigeminal neuralgia. I said no. He said I should look into it. As soon as I left his office, I looked it up and I’ll be damned if it didn’t look exactly like what I had. There are two types and it seemed to me I had the harder one to diagnose, Type 2. When I went to the pain management specialist, he spent an hour and a half with me and listened to me and went over many things with me and then agreed with my assessment and gave me a preliminary diagnosis of TN Type 2 and scheduled me for a diagnostic procedure called a gasserian ganglion block. If I responded to it, I had it. I underwent the procedure, the pain immediately disappeared for the first time in 10 months and it stayed away for 18 days. I had it. I was elated! There was finally a name associated with my problem and that meant there were actual ways to treat it. Nothing great, unfortunately, but ways. Ironically, there’s one medication that is supposed to work really well for people, but I’m allergic to it, so that leaves nerve blocks and five different surgeries, all but one of which are temporary fixes. The other one is a permanent “cure,” but it’s dangerous, sometimes fatal, and some neurosurgeons are reluctant to go that route. And it can kill the nerves in your face and take a year to recover from. So it’s the last resort. So I’ve had a series of nerve blocks over the past few years, some effective, the last three, last year, totally ineffective.

Fast forward to Spring 2014. My TN had been somewhat under control for awhile and I was glad. Then I started getting a new type of head pain, a “standard” type of bilateral headache that was incredibly severe. It’s gotten worse over the past year and a half and this year, it’s been brutal. It’s gotten so bad that I now have a 9 or 10 out of 10 headache pain 24 hours a day, 7 days a week, every month, all year. I don’t get any breaks. Pain medications do little. Combine that with the severe back pain I’m in, which is also a 9 and 10 out of 10, and I’m in constant agony. I’m looking at several possible surgeries there. In the meantime, I’ve been to my primary care physician, my pain management specialist, a new neurosurgeon, and now a new neurologist trying to find the source of this new damn head pain and a way to stop it. That’s what the three gasserian ganglion blocks were for last fall, but I knew they wouldn’t work because I knew it wasn’t TN pain and I couldn’t get my damn doctor to understand that. My doctors don’t believe me when I tell them my pain is bilateral. In fact, my neurologist told me last time I was there that in all the years he’s been practicing, and he’s a headache specialist, I’m the FIRST person who’s ever told him he has a bilateral headache! I find that virtually impossible to believe. Impossible. By the way, he has diagnosed me with a cluster headache, which is supposed to be the most severely painful condition known to mankind, just as trigeminal neuralgia is too, depending on which research you read and believe. Either way I’m screwed. And this neurologist, to his credit, seemed to be trying some things to help me, but not very well. His meds he gave me did nothing. He gave me Botox injections, but they helped some for a couple of weeks and that’s it. And I don’t like him. He’s the most ego maniacal, narcissistic, controlling doctor I’ve ever met and all of my other doctors I’ve ever had have been wrong, wrong, wrong because only HE knows what’s right. Asshole. So I’m going to stop going to him. That’s when I decided to look to for a better facility out of town for help, cause Chattanooga doctors are worthless.

Enter Vandy. Allegedly a good neurology department with a headache clinic and 80 neurologists on staff. I had some preliminary medical records sent to them with a referral and I was eventually accepted, as I said. I was sent a letter instructing me to bring all of my medical records with me, so I spent two weeks and $120 getting them from four doctors. Getting them from my neurologist was pure hell. He didn’t want to give them to me. Kept making excuses. Had to “approve” my request. Had my personal file in his office which his staff didn’t have access to. Demanded to know why I wanted them. I refused to tell him. If I told him I wanted to take them to another neurologist, he would have gone apeshit insane! I don’t think he would have given them to me. Gretchen decided to go with me for two reasons. One is, it’s a six hour drive both ways and because of my pain, I probably wouldn’t be able to drive back on my own. So that was nice of her. Also she wanted to be supportive and supply supplementary information to the doctor in the consultation and learn things in general. So I got a list of all 22 of my prescriptions and got all of my paperwork together and we hit the road at 7 AM Thursday.

We finally got to Nashville and got there early enough to have a cup of coffee. I then checked in. I was registered and a nurse took my vitals and recorded all of my medications and asked some various questions and then we had to go wait out in the hallway lobby, where there were virtually no seats anywhere. Now understand, we had high expectations. I viewed this as my last resort. My last hope. We expected to spend serious time here. We expected to meet a doctor, spend a great deal of time going over my head pain history, maybe pointing out some things in my various medical records, being given a thorough exam, asked a ton of questions, being given a preliminary diagnosis, and hopefully a new “miracle” prescription that no one in Chattanooga was smart enough to think of. We thought we’d spend some two or more hours there easily. When I went to my consultation and diagnosis at my pain management specialist, he spent over an hour and a half with me.

So, we were taken back to a room and eventually, a very young, very tiny black woman came in and introduced herself as Dr. Williams. She was energetic and extremely assertive. She hadn’t read any of the massive amounts of paperwork I had filled out at home and brought with me or filled out while I was there waiting. I showed her my huge pile of medical records their letter instructed me to bring and was going to hand it over when she surprised us be telling us she didn’t want it. It wasn’t relevant. It didn’t matter. She didn’t care about it. That seriously pissed me off because I spent money and a lot of time and effort getting those records and she blew that off in 30 seconds. In terms of discussing my head pain background, she spent less than five minutes, if that. If that. She seemed more interested in my ADHD and my Adderall. She wanted to know if I’d ever had Botox treatments. That was a question I had just answered on the paperwork I had filled out in the lobby. If she had looked at my paperwork she would have known the answer to that. I told her once. She told me it takes three full treatments of 31 facial injections each before they work. So, she decided to prescribe two migraine medications that I don’t need and won’t work, one of which my rheumatologist has forbidden me from taking, and to double my dose of Topamax, even though I’ve been on the higher dose and found the side effects so horrible, I begged to be taken off it. I was also stunned she would do that without even consulting my doctor who prescribes my Topamax for me now to see if he was okay with that. That’s not professional. She then said I needed Botox treatment “right away.” I thought that would mean next week. Gretchen asked if I needed to drive all the way back up here for that, if someone in Chattanooga could do it. She didn’t seem very thrilled with that, so I volunteered to drive back up to Nashville, which seemed to mollify her. She said the scheduler would set up the Botox treatment. For right away. And she gave me their first available appointment. For mid-February. Mid-fucking-February. Assholes. And this Dr. Williams spent a grand total of perhaps, at the most, 20 minutes with us. We drove six hours for that. Six fucking hours. As Gretchen pointed out to me on the drive home, she didn’t do ANYTHING that any doctor in Chattanooga couldn’t do himself. Nothing. Where was the Vandy magic? Where was the Vandy reputation? And this woman was so sure of herself, so cocky. She KNEW she would cure my pain immediately. And I’m totally unconvinced. Everyone else has tried and failed, why would she succeed? So I gave the visit a generous C-. Gretchen gave it an F. Gretchen was lived. She thought the doctor had an attitude and a serious chip on her shoulder for some reason. She thought she didn’t like Gretchen questioning her. Maybe she’s right, I don’t know.

I had an appointment with my primary care physician here in town yesterday. I told he and his nurse about my experience. They were horrified. They’re going to refer me to yet another local neurologist in the hope that I can find one decent enough to think — apparently they all suck in this town; it’s well known — and maybe, if he agrees with the Botox assessment, he can do it on his own well before I would have to go back up to Nashville again. And then I could just dump Vandy and strike it up as a stupid effort on my part. And there’s always Emory in Atlanta. They’re supposed to have a good pain clinic. Although I’m somewhat leery now. Some of my friends are suggesting the Cleveland Clinic or Mayo, but I’m not made of money. I can’t afford to do that. Geez! It’s got to be within driving distance. That limits my options tremendously. All I can say is Gretchen and I feel really disillusioned with our experience with Vandy and don’t think they really know what they’re doing, no matter how good their reputation. Maybe all Tennessee neurologists are inept? It’s possible. I expected a minimum of two hours and a thorough consultation. I got 20 minutes and a treatment plan I’m not convinced will work and which any doctor in Chattanooga could do next week, not three months from now. I can’t believe I waited for this, hoped for this, put all of this time, money, and effort into this. What a bust.

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