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Archive for the ‘Health’ Category

Strokes

Posted by Scott Holstad on October 21, 2016

Some people have been asking about me lately, so I thought I would write a brief post letting you know a couple things that have been going on with me. Thanks for asking.

Over the past two months, I have had two minor strokes. The first one wasn’t that bad. Eight doctors confirmed it was a stroke. I had numerous tests. I was told once you have one of these, you’ll have more and more frequently, and they’ll get worse until you have a major one. I was also told they cause brain damage and that this one had caused brain damage. Two neurologists and three other doctors also showed me and convinced me that my right side had lost considerable strength, as well as speed and reaction times.

Last month I had another and it was worse. I wrote a diary entry about it because I had a bad feeling about it, and indeed, when I saw my neurologist that afternoon and he asked me about it, I couldn’t remember any details and simply asked him to read my diary. In fact, it took me days to recover and I couldn’t remember about four days during that week. I think I suffered real memory loss and I’m willing to believe some actual brain damage.

So, now I’m on medication and wondering when the next one’s going to hit. And how much worse it will be. I’ve redone my will and my living will. And I’m still having other major health problems. Right now, my ongoing head and back pain problems are taking a back seat to my 18 month old severe stomach problems. I’ve been to many doctors and have had many tests, but no one can help me. In fact, two weeks ago, I was sent to a major hospital out of state for consultation, medication, and tests, because no one here can help me.

I’m still reading a lot, but I’m obviously not writing book reviews. I don’t have the energy or stamina to do so. I have 71 books sitting here to review and I just can’t bring myself to do it. 71. I spend every afternoon and evening exhausted and fatigued to the point of falling asleep at all hours, no matter what I’m doing, whether it’s lying down, sitting in a chair, sitting at the dining room table, even standing up. We think I may have narcolepsy. I average between two and four doctor’s appointments a week, all in the mornings, and spend the rest of the day exhausted and usually in pain. Also, I can no longer drive. I’ve been banned for several reasons, one of which is I pose a danger to myself and others. I now ride the local bus company’s vans for the disabled and take Uber. I also have to use a cane when I walk. My life has changed a lot just in the last year.

I guess that’s it. I could write a lot more, but I’m already tired out and have to stop. I hope any of you reading this are doing well. Sorry about the reviews. I’d like to resume doing them. I’ll do them when I can. Cheers!

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A Shocking Discovery

Posted by Scott Holstad on August 16, 2016

I had an appointment with my neurologist yesterday and in discussing some problems I had last Thursday, among several topics, I was shocked by what he told me. He said that I had had a minor stroke! I was stunned. I didn’t believe him. He said he was 100% certain I had had a stroke. I won’t bore you with what symptoms I had exhibited that led him to believe that, but as I wouldn’t believe him at all, he then conducted a battery of neurological tests on me, right side versus left side. This had impacted my right side. To my complete shock, the entire right side of my body is noticeably weaker, slower, less responsive, etc., than my left side. That was pretty convincing. I had had no idea before then. He told me I’m the ideal candidate due to my age, gender, and the fact that I’ve been experiencing some things that my doctor asserts would be typical of one experiencing that kind of trauma in that region, including years of severe pain in my eye sockets for numerous hours per day, every day. He sent me for an immediate MRI to make sure it’s not worse than what he thinks it is and he sent a request to my cardiologist for her to run some tests too. I called Gretchen in the taxi ride home and told her and she was shocked. I think she was a little distressed as well. She needed some time to process and I had to get to the imaging center, so we said goodbye and I spent my afternoon getting blasted in a loud machine. My third MRI of the year. So, after reading about this, I’ve discovered that 1 out of 20 people who have one of these have a major stroke within a few days and that 1 in 10 within three months. I kind of feel like I’m living on borrowed time. This is a bit of a shock. Gretchen seemed really surprised by my revelations about my weaker right side, so she asked me to do the basic first test of using both hands to shake her hand, something I did with my doctor. It appeared that my left hand’s grip nearly broke her hand. She winced and asked me to let go quickly. It was a tight grip, as my grips always have been. Then, I used my right hand. She was shocked! She asked me to squeeze harder and I told her this was the best I could do. I was basically making contact, I think, and I don’t think I was able to apply much pressure. It was embarrassing to me, but I think it showed her how weak my right side is. She didn’t conduct anymore physical tests. She was either convinced or too depressed to do so.  Anyway, I also had a tempestuous phone conversation with my mother last night, which make my day even better. All I can say is thank God for Gretchen, who while upset, is still a kind, loving, supportive person, there for me, and we can both lean on each other. Thanks for letting me share this, friends.

 

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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.

 

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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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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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Correlation?

Posted by Scott Holstad on November 4, 2015

So if you’ve been reading me for any time at all, you’re familiar with the fact that I have and battle severe head pain. I have trigeminal neuralgia and have somehow also been diagnosed with cluster headache, both of which are supposed to be among the most painful conditions there are in the world. My pain this year, made worse by my daily, horrible back pain, has been hellish and debilitating. But my wife and I have started to suspect a possible pattern with my head pain and we’re interested in trying to prove this theory. I have really bad insomnia and average about three or so hours of sleep per night. I try to go to bed between 10 and 10:30 at night and often am up between midnight and 2 am, even as early as 11:30 PM the other night. I can’t go back to sleep when this happens, typically, although my sleep doctor has given me a second sleeping pill to take when I wake up so that I can try to get more sleep. Sometimes I take it and it can work. Sometimes it doesn’t. Sometimes I forget to take it. And sometimes I don’t want to take it, cause I actually like getting up fairly early. Anyway, two of the past three nights I’ve somehow slept in. One night I slept in until the horribly late time of 6:15 and the other I slept in until 4:15. It was horrifying. What was more horrifying was that my head pain was much worse than usual on both days following those nights. I had 10 out of 10 days. The pain was nonstop, all day hell with virtually no relief. Eventually, quite a few prescription pain meds helped decrease the pain by the very end of the day just a little bit, but it was way too little way too late. And the interesting thing was that on the usual days that I get up between midnight and 2, my pain level is usually more between 7 and 8, sometimes as low as 6 out of 10. Usually 7. And this isn’t the first time we’ve noticed this. I rarely get to sleep in, so we haven’t gotten to observe this often, but the few times it’s happened, we seem to recollect that my really bad headaches seem to occur on days I get the most sleep — seven or eight hours. When I get, two, three, four, the pain is somewhat significantly less. Why is that? I have no idea. There has to be a correlation, though, don’t you think? It can’t be pure coincidence. When I go to Vandy’s headache clinic next week, I want to bring this up and let them ponder this. See what they ultimately have to say about it. I do know poor sleep can affect head pain. But to this degree? By the way, I’ve told my pain management specialist I’m going to Vandy and she’s excited and hopeful for me, but I haven’t told my neurologist because he’s a massive narcissist who would probably be massively insulted and might make things hard for me. I’m not quite sure what to do about that. I don’t want to drop him yet because Vandy might not be able to help me and/or driving six hours a day to go there and back regularly might turn out to be a giant pain in the ass if they’re not seriously helping me long term. Oh, and Gretchen is taking that day off to go to Nashville with me, which is awesome. It’ll be great to have her support and also her word to confirm my assertions, as well as to drive us home as truthfully, I don’t know if I’d be able to do so based on my recent head pain patterns.

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Rheumatologist Appointment

Posted by Scott Holstad on November 1, 2015

This week, I had an appointment with a rheumatologist. I had been waiting nearly SEVEN months for this appointment! I was not happy about having to wait so long. However, I was increasingly desperate and was hopeful this doctor could help me.

I’ve always had strong hands and have always been able to give long, strong massages my whole life. That stopped several years ago. I developed pain in my hands, particularly around my thumbs, that made it impossible for me to go on longer than just a few minutes. Furthermore, over the past two years, my hand/finger pain has gotten a lot worse. I can’t grip things. I can’t mow anymore. For one thing, I can’t grip the mower handle. For another, my orthopedist tells me I have arthritis in my hips and it hurts horribly to move more than 10 steps. So the past two years, I’ve hired a lawn care service to take care of our yard and our lawn mower has gone unattended. I feel guilty for this, but literally, the last many several times I attempted to mow our small yard, I had to stop many times to give my hands and hips a rest and it took quite awhile to get it done, and with quite some pain. I also have a hard time vacuuming. Not only does it hurt to grip the handle, but now it hurts my back too. Apparently, that’s because, as my orthopedist told me, I have arthritis is my spine too. I’m in physical therapy for it, but it’s not doing much good. My back hurts like crazy all the time. Additionally, I’m old fashioned. I like to write checks. I like a paper trail. So I pay a lot of bills the old fashioned way. I sit down to write seven or eight or nine checks for bills and after the first one or two, I have to stop for five minutes or so, because my hands and fingers hurt so much. And then after I write another check, I have to stop again, and so on. The point is, it’s pretty debilitating. So I wanted to go to a rheumatologist. A long time ago. And this is the earliest they could fit me in. I sure hoped they would be good.

My appointment was for 8 AM, but since they never mailed me my new patient paperwork to fill out, I had to show up early do fill it out there, so I got there at 7:15. My new doctor was named Dr. Braggs. I really didn’t know much about her. I was hoping she would be good. I haven’t always had the best luck with specialists here in Chattanooga. After I got the paperwork pretty much filled out, they called me back and put me in a room. They took down all my medications, which took a long time since I’m on so many, but eventually I was ready and then, to my surprise, I didn’t have to wait too long. Dr. Braggs came in my room quite soon and it was apparent she wasn’t a southerner just based on her accent alone. Also, she didn’t engage in idle chit chat, like all southerners do — which drives me nuts sometimes — and was very professional and businesslike. I appreciated that. And she was thorough! She asked me a number of questions, tons of them. All types of questions. She went over all my meds. She talked me to about pain meds and about my misuse of over the counter pain meds, including even Tylenol. She told me what I could and couldn’t take, how much, and why. She conducted a very comprehensive physical exam, including even taking my shoes and socks off and examining my feet, toes, and ankles. We were in the professional building of a huge hospital in town and she was able to call up all of the images the hospital system had of me dating back all the years I’ve been here. She looked them over and while admittedly, many of them weren’t recent, she was able to determine a number of things. She showed me what she was talking about on her computer while she talked about them, which was very helpful. Apparently, then, I have massive osteoarthritis spread throughout my entire body, mainly in my hands, entire spine, and hips. I knew the thoracic area of my spine had it, but I didn’t know my entire spine did. She also told me it’s likely I’ll need a couple of hip replacement surgeries in the not too distant future, which was quite depressing, although she encouraged me to do everything possible to hold that off for as long as possible. She sent me to have blood work done to see if I have gout or Lupus or anything like that and she sent me over to the hospital to have my hands x-rayed, since she actually didn’t have hand x-rays. She was pretty sure my hands were bad though, especially — and much to my surprise — virtually every knuckle she touched on both hands were very sensitive to her handling of them. It really was pretty uncomfortable.

Between the doctor’s office, the lab, and the radiology department, I was there for over three hours. She wrote me a prescription for a medication which hopefully will help with my back/joint pain, or something like it, and then told me to get three supplements I should start taking right away. She also told me I couldn’t take any more NSAIDs like Advil or Anaprox and had to limit my Tylenol intake to a maximum of six per day, but that for every Percocet I take for head and/or back pain, I had to subtract a Tylenol, so it’s tricky. She wants me to start swimming, although when I told her I can’t swim, she then said water aerobics. I’m to see her again in four months. That was Wednesday, I guess. On Friday, someone from her office called to let me know my blood work lab results came back showing I don’t have gout and most things looked fairly good and that my hand x-rays showed quite a bit of osteoarthritis, which didn’t really surprise me. So, I felt really good about her. I thought she was very competent and knowledgeable. I thought she was professional and appreciated the hours she spent with me. Even though the idea of a couple of hip replacements is depressing and scary, I was glad to come out of there with more knowledge and a better idea of what’s going on with me and what, if anything, can be done about it. And apparently, not too much can be done about osteoarthritis. It’s not curable, I learned. It’s somewhat manageable, and perhaps many of you already know that. I truthfully didn’t know much about this. In fact, until a couple of years ago, I thought arthritis was just an annoying little pain old people got in the fingers. Boy, was that stupid! Although the doctor did say I was awfully young to have so much osteoarthritis. Anyway, that’s my update. Glad I did it. This month, I have a lot of doctor’s appointments. The one I’m most excited about — and nervous about too — is at Vanderbuilt’s Neurology Headache Clinic in Nashville in a less than a couple of weeks. So far, my pain management specialist, neurologist, and neurosurgeon, among other doctors, have been unable to help me with my extreme head pain over the past year, so I’m going out of town to find help. I’m hoping a major research institution can do just that. I’m scared they won’t be able to identify the problem and fix it, though, and that’s a depressing thought. Still, I’ll cross that bridge when I come to it. I hope everyone had a happy Halloween. Cheers!

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Pain Issues Update

Posted by Scott Holstad on October 9, 2015

As I’ve written about before, I have to deal with extreme pain and have had to since about 2010. However, it’s gotten worse since around April 2014 and, if possible, even worse than that since about six months ago. I have Trigeminial Neuralgia, which is one of the most painful disorders known to mankind. Wikipedia calls it the Suicide Disease. It affects the trigeminal nerve in the brain, which impacts your entire head and face, providing blasts of indescribable pain which are completely debilitating. And I happen to have Type 2, which is a slower acting, long lasting type of TN, with a less sharp, but still extremely violent type of pain that impacts my entire head and face, usually on my left side. It makes it impossible to do very much at all. For several years, I was completely bedridden with it. I have had to have a number of minor surgical procedures for it, some of which have worked short term, many of which have not. I’ve taken a zillion meds for it, but the only one that’s ever helped has been Percocet, which I’m not fond of taking. Unfortunately, I have to.

At the same time, I’ve had back problems. I was diagnosed a year or two ago with coccydynia, which is extreme tailbone pain. I was diagnosed with degenerative disc disease in my lower back and some other lumbar problems. I also have arthritis in my hips and it hurts to walk any distance at all, and it certainly has hurt to sit for any duration many, many times. I have one of those “donut” pillows to sit on, which helps somewhat.

Because of these problems, I am on disability.

The problem is that in the spring of 2014, I started getting a different type of head pain and couldn’t figure out what was happening to me. It actually seemed to be an extreme type of “normal” bilateral headache and it’s stumped my doctors. In addition to my primary care physician, I have a pain management specialist, a neurologist, and a neurosurgeon. None of them seem to hear what I’m saying when I describe this new head pain to them. I guess cause it doesn’t make sense to them. It can’t be bilateral and cause that much pain, so they ignore me. My neurologist, at least, has been trying out a ton of different meds on me. The problem is most don’t work and most are so new and expensive that Medicare won’t pay for them. Great. Five weeks ago, he gave me Botox injections for the first time. I’ve always heard they can help with head pain. He told me it takes one to three weeks to kick in, but should work for two to four months. It took about two or three weeks before I noticed a difference, and my head pain did improve from about an 8 or 9 out of 10 to about a 5 or 6, which was big, but this past Saturday, the pain returned with a damn vengeance, and until yesterday, I’ve been at a 10 out of 10 every day since. It’s been brutal. And the new meds he’s given me to take haven’t done anything.

Meanwhile, about six months ago, my back started hurting really badly, every day. Like 9 or 10 out of 10 every day. Excruciating pain. Combined with my head pain, it made life virtually unlivable. I scheduled a massage or two, thinking it might be muscular, and that worked for a day or two, but I was also concerned it might be skeletal, so finally, after waiting way too long, several weeks ago, I went to see my orthopedist. They took a ton of x-rays and then had some surprising news for me. First of all, my coccydynia is worse than I realized. My tailbone is broken. Completely. My doctor recommended I have surgery to have it removed. I had already talked about that with her a year ago and since have talked about it with several other doctors of mine, all of whom advised me against it as they’ve had patients who have done that only  to wind up with permanent, horrible pain as a result of the surgery. They said it would be stupid, just live with it. I told her that and she said their surgeon is an expert and has written books on the subject and that people come from as far away as Minnesota to get him to do their surgery. *sigh* I don’t know what to do. For the moment, I don’t think I’ll have it done. Secondly, I still have arthritis in my hips, which of course I knew. Third, my degenerative disc disease in my lower back has worsened, if that’s possible. Fourth, I have arthritis in my middle back’s spine. Fifth, I have degenerative disc disease in my middle back, where my main pain is located. Sixth, and most important, she used a medical term for this that I don’t remember, but in my own words, I have the worst curvature of the spine I’ve ever seen just by looking at the x-rays. Unreal x-rays. And I’m only in my late 40s. Damn! How did that happen??? I’ve never seen an x-ray that looked that bad before, with the possible exception of my broken tailbone. She said my middle back muscles are straining to compensate for that spinal problem and are too weak to cope, so she sent me to physical therapy for eight weeks and will see me again when I’m done. Hopefully I can avoid surgery. I know sometimes I’ve slouched over the years, but I actually do try to sit straight and stand straight most of the time, so I have no clue how this happened. And all of this has been contributing to my 10 out of 10 daily pain I’ve been experiencing for months. Unreal.

Back to my head pain. I’ve come to the conclusion that no doctor in Chattanooga can help me. I need to go to a big time place. So I contacted Vanderbilt University’s Neurology Headache Clinic and talked to them for awhile. They require a referral, so a month ago, I asked my doctor to fax one to them and he did. They told me it would take two to three weeks for them to contact me. Well, it’s been a month, so yesterday I called them and they claimed not to have received the referral. Great. I’ve been suffering like crazy while waiting for nothing. I called my doctor’s office again and explained the problem and the person I talked to had an attitude. Said they’d faxed it. I said maybe they sent it to the wrong fax number, would they please re-fax it to THIS fax number. They grudgingly said they would. I waited a few hours and called Vandy back to see if they got the referral. The woman I spoke to asked which fax machine did they send it to. Man, how many fax machines do they have? They must be a huge place for a “clinic,” because they have 80 neurologists on staff. Anyway, she said she’d have to send a message to their “faxist” to research the matter and someone would get back to me. That was at 1 PM. No one ever called me back. Why are healthcare professionals such dumbshits? Why are they so damn rude? Man, it’s like pulling teeth with them and they treat you like they’re doing you the greatest favor in the world when in point of fact they’re actually just DOING THEIR DAMN JOB! Anyway, the woman I talked to also said something about all of my files being faxed to them, which surprised me because no one had ever mentioned that to me before. All I’d been told was the referral. If they want medical files, I’d have to contact a number of doctors and it would take awhile and probably tick some people off. Of course, I could do it, but why do it unless I knew they’d agree to see me? Maybe they wouldn’t agree to see me without seeing my medical files…. What a damn hassle. Just the fact that I’m willing to drive three hours away one way to get help should indicate how desperate I am. I would really like to think that they could help me. When I talked in depth with one of their nurses last month, she told me I seemed like a hard case and would need to be seen by one of their department heads. I’d really like this to work out, cause I need help. I am, however, nervous about my current neurologist finding out. He started the first headache clinic in Chattanooga, has been very successful, is a huge narcissist, and I think would be very offended if he knew I were taking this step. He might even drop me as a patient. I don’t really know. And he is trying to help me. It just hasn’t been that helpful so far. However, I see him next week, so I’ll tell him about the results of the Botox injections and see what he does next. Who knows? Maybe he’ll come up with something. I doubt it, but maybe….

Anyway, since this pain has been ongoing since 2010 and since it’s gotten worse a year and a half ago and since it’s gotten much worse a good six months or more ago, I’ve become increasingly depressed. It’s difficult to make plans to do anything when you’re always in major pain. It’s difficult to actually do anything period. It gets old lying around the house feeling sorry for myself. I do get out in the mornings, usually, to run errands, since my pain seems to be less severe in the mornings, but it worsens throughout the day and there’s nothing I can do about it. Lately, it has come to feel like I’m in a hopeless situation, like I’m trapped in a prison with no way out. It feels like no one can help me, like I’m totally screwed. If this is what I have to look forward to for either the indefinite future or the rest of my life, well, where’s the quality of life in that? It just gets increasingly hard to remain upbeat or positive and I feel like I’m dumping on my wife all the time and that makes me feel badly, because she deserves a more positive husband as she has her own issues to deal with. Well, I guess that’s it for now. I have an appointment with my neurologist next week, as I wrote, and another with my pain management specialist in a few weeks. I’m going to try and follow up with Vandy. Maybe something will come of it, although I frankly don’t have high hopes. Feel free to send good vibes, if so inclined. This is a deep pit I’m trying to climb out of.

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