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Posts Tagged ‘back pain’

Good “Pain” Article: “25 ‘Scary’ Side Effects of Chronic Pain We Don’t Talk About”

Posted by Scott Holstad on April 16, 2019

I subscribe to a health e-zine some of you may know: The Mighty. It tends to focus on areas such as cancer, mental illness, disability, chronic pain, chronic conditions, rare diseases and many more topics. I have several primary categories I read it for.

Today I found an article there that I really felt like I could seriously relate to. As many of you know, I’ve been having to deal with, among other things, an increasing number of diseases, disorders, and conditions that result in chronic pain for the past decade, foremost of which is Trigeminal Neuralgia Type 2 — but there are many others. And just like with other health categories, The Mighty often comes through with a really relevant article, and I thought this one on chronic pain was good today. Entitled “25 ‘Scary’ Side Effects of Chronic Pain We Don’t Talk About,” I can relate to many of these, and I could add many more of my own. I thought about just putting a link to the article here, but thought readers might not be inclined to click on it, so with apologies to The Mighty, in addition to the link, I’m going to re-post the entire (short) article here for you to read. I welcome comments. Thanks.

Paige Wyant authored this.

 

_________________________________________________________________________________________________________________________________________________________pain

As those who live with it know, chronic pain can result in so many more symptoms and side effects than “just” pain. Pain conditions can have an impact on just about every part of your life, thus provoking a wide range of emotions.

Living with a chronic, unpredictable condition that is tough to manage can naturally affect your mental and emotional health – and one of the most common side effects pain warriors experience is fear. Many may understandably feel scared and anxious about their health, and worry about what their future might look like.

To help others better understand why those with pain conditions might struggle with feelings of fear, we asked our Mighty community to share a “scary” side effect of chronic pain they experience, and how they cope with it. If the following sound familiar to you, know you’re not alone.

Here’s what our community shared with us:

  1. You get so used to being in pain you don’t always have a firm grasp on what’s serious pain anymore. I just got a stress fracture in a new surgical area but I never felt the pain was high enough to be concerned over. Thankfully I’ve learned over the years to err on the side of caution and check with my doctors more often than I’d personally prefer. But every time it turns out to be something serious, it drives home the fact that to me… that serious problem presented as only minor pain.” – Amber R.
  2. If I’m this sick and have this many complications at at 29 years old, what will 39…49… 59 look like for me? It’s scary.” – Stephanie B.
  3. The toll it can take on my overall mental health. In the middle of a flare, days can blend together and I start feeling pretty depressed. I have to be extra intentional about interacting with others and getting outside of my head.” – Laura F.chronic pain, 
  4. The fact that no one can see what I’m going through, and that it will never go away. Pain caused by central nervous system disorders can’t be seen, there’s no evidence, so the only person who knows what I’m going through is me. That isolation scares me.” – Amy C.
  5. Unknowingly lashing out at loved ones and friends when I’m in a pain flare. I don’t even know I’m doing it at the time, and when all is said and done I’ve usually hurt someone’s feelings. Relationships can suffer because of pain.” – Kathryn M.
  6. CollapsingI hate it. It just happens in a flash and I can’t always feel it coming first. My biggest fear happened recently – my pain surged, my legs collapsed, and I fell flat on my butt in a crowded room. I have never been so embarrassed.” – Katelyn I.
  7. There are times when I cannot get out of bed. I can barely move at all, including my jaw to be able to eat or take meds. To cope, I focus on what I need to do to improve my situation. I slowly do gentle stretching exercises starting with my fingers and working to other joints. When I’m able to move enough, I get a protein shake from the mini fridge next to my bed and drink it through a straw, which I keep on my nightstand. Usually by that time I am able to open my jaw enough to take medications. Then I take deep breaths and remind myself the symptoms are temporary while I wait for the meds to kick in.” – Jackie R.
  8. Trying to keep my job for the health benefits when I can barely function.” – Ceil B.
  9. The financial repercussions. Not being able to work full-time, plus medical expenses and raising three girls on my husband’s salary is scary. I don’t know how people do it. I’m not depressed – I’ve been there – I know what it is, but some days I feel like they’d all be better off without the burden of my health issues. It’s just exhausting, and frustrating, and infuriating… all the time.” – Jen M.S.
  10. Forgetting for that split second that you can no longer accomplish a certain natural action of your body, and making it hurt worse. The forgetting of some things is very scary, very. I think our minds need to over compensate in other areas, so we simply become forgetful. For me, very very scary, especially at first. And looking back and realizing things that occurred before I was diagnosed were signals. Scary stuff.” – Sky C.
  11. Wondering if this is the way it will be forever or if this is only the tip of the iceberg and it will get worse. Is my 10 today the same as my 10 next month?” – Sarah E.
  12. My memory loss. Ever since I was diagnosed with fibromyalgia, my memory has been getting progressively worse. I’ll forget what I’m doing as I’m doing them. I’ll forget what I’m saying mid sentence. It’s scary because I’m 18. It shouldn’t be this way. I cope by writing everything that is important down and making sure that I’ve got notes and lists of everything.” – Abi S.
  13. Not being able to be the mom I want to be. Feeling like I’m not enough for my kids physically, emotionally, or financially. I’m not just a single mom but a solo mom to my youngest since his ‘father’ isn’t involved at all. And I’m the primary parent to my oldest.” – Sarah N.M.
  14. The doctors’ inability to help me manage it. There are so many laws governing what pain medicines can be given and for how long that it’s almost impossible to get effective pain management. It seems like doctors are now trained to assume everyone (especially those with relatively invisible illnesses like EDS) is seeking pain meds for an addiction. This results in an environment that discourages those who have legitimate pain from asking for the help they need. I’m literally terrified to ask for pain medicine, and usually my husband has to speak up for me or encourage me to seek the help I need.” – LeAnn H.
  15. Suicidal thoughts. Before the pain I loved life and the future but now I’m scared of it all driving me into some pretty dark places. Spending time cuddling with the kids and cats helps temporarily.” – Shayla F.W.
  16. Symptoms that mimic stroke or heart attack. I have lost feeling on the entire left side of my body, lost my ability to speak, and also had severe chest pain due to the various chronic conditions I have. It is always difficult to decide if I need to go to the emergency room, or if my symptoms are ‘normal.’” – Lisabeth B.D.P.
  17. Fear of the unknown for me. My pain changes day to day with EDS and has gotten significantly worse while moving to more and more joints and organs of my body over the last few years alone. I fear not knowing how much pain there will be in 10 or 20 years, when at 30 I’m already not sure what tomorrow’s pain will look like. I have to remind myself every day that God is in control and I only need to take things one day at a time.” – Meg S.
  18. When I get a different answer every time I go to the doctors of what is exactly wrong.” – Samantha K.
  19. “The times when I’m incoherent and on the verge of losing consciousness due to how severe my illnesses are. I purposefully avoid medications that alter my mental state because they cause me such great anxiety, but, when I am in a long bout of severe pain, my mind and body can no longer handle it and so I succumb to being unconscious and it is terrifying. Waking up and not knowing where you are or what happened. How long you were out. I cope by staying away from social situations and staying home so if I do pass out I’m in a safe environment and less embarrassed.” – Caitlin M.
  20. Feeling like I’ll never reach my potential because the pain limits me more than I want to admit.” – Jacqueline B.
  21. Applying for SSD and getting denied, after giving 30 years in service to this country in the Corps and government agencies. Now a SSA bureaucrat tells me I’m not disabled enough. Financial ruin because I can barely get out of bed in the morning due to the pain. As a single parent, just trying to grocery shop is something I have to mentally gear up for for hours because I dread the pain. I feel deserted by friends, family and my government. Literally don’t know where to turn. That’s my scary…” – Jim R.
  22. Making plans and not knowing if you’ll be able to come through. The feeling of letting people down can be as just as bad as the pain itself, knowing others are counting on you… but you just push through and pray you don’t collapse for good.” – Erica F.
  23. I never know what I’m able to do. I can be OK one day trying to catch up on all that I’ve slacked on. Then be completely debilitated crying for two weeks.” – Nikki D.
  24. Watching the symptoms evolve in our daughter is by far the scariest and hardest thing about this condition for me. I know exactly what’s she’s in for and I can only pray that early diagnosis will give her an easier future.” – Crystal F.
  25. The worst part of my Ehlers-Danlos syndrome and all the other things that seem to come with it is guilt. Mostly, I feel guilty of the toll this has brought to my family. The guilt doesn’t seem to end there though. It trickles into every aspect of life itself. Guilt of the day going by with nothing productive done. Guilt that I’m not the mom and wife I used to be. Guilt that my family isn’t nourished with healthy meals because I haven’t been able to cook for so long. Guilt that my children are showing the exact same symptoms of this genetic illness. Guilt that my brother [died by] suicide over this same illness. Guilt that we didn’t have answers sooner. The list could go on and on. Chronic illness never ends, not even if we are tired and are begging for it to go away. The only way I know how to deal with it, is to take one day at a time. Every day I try and remain hopeful and remind myself that I’m not the only one fighting chronic illness and every day I just try and do what I can.” – Melissa D.

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Letter to People Who Think Chronic Pain Isn’t That Bad | The Mighty

Posted by Scott Holstad on April 20, 2016

A letter to people who don’t understand chronic pain and think it’s “not that bad.”

Source: Letter to People Who Think Chronic Pain Isn’t That Bad | The Mighty

 

This is a really good article. Not the best I’ve ever read, but really good. It does a good job at trying to explain the problem people with severe chronic pain have in trying to live with. My wife found it and shared it with me and I then shared it with a number of Trigeminal Neuralgia support boards I’m a member of online and the response was overwhelming. Many dozens of people “liked” this article, many dozens of people shared this article, and there were a number of comments too. Some of those commenting said they thought this article might help their friends or family understand where they were coming from. Maybe. Maybe not. Still, if you read this and understand anything from it, take anything away at all, it will be much appreciated. I have several major chronic pain-producing illnesses, disorders, and problems in general, surrounding my face, head, and back. The worst is Trigeminal Neuralgia. I have TN Type 2. Only about 5,000 people in America have it, so it’s very rare and as a result, is not well understood or easily treatable. That makes it difficult for me to adequately describe my situation to anyone, let alone my doctors. Sometimes the doctors I meet have never even heard of TN Type 2. That’s when it becomes discouraging. But whatever the case, I thought this article was at least a 7-8 out of 10 and worthy of sharing and posting myself. I hope you’ll read it and if so, I hope you’ll get something out of it. Cheers!

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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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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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Thanksgiving Maryland Trip

Posted by Scott Holstad on December 1, 2015

This is my 600th blog post on WordPress. Yay!

My wife is from Maryland and her parents, grown sons, and many friends still live there and she rarely gets up there to visit, so we went up last week for Thanksgiving. She had been looking forward to it for a long time. It was an 11 hour drive and we had to stop many times. It was grueling and tiring. As you know, I’ve long been suffering from severe head and back pain, so that made this trip difficult for me. Nonetheless, we got up there before 4 PM on Tuesday and met her parents for dinner. It was nice to see them and they were shocked to see how different we look from when we last saw them. Gretchen has lost about 35 pounds and I’ve lost over 70 pounds. After dinner, we went back to our hotel room and basically passed out. It had been a long day.

Wednesday we got up and had our own low carb breakfasts we brought with us. We then went to MarylandLive! Casino. Gretchen had never been to a casino before, had never gambled, which was bizarre to me, so she was excited. When I lived out west, I went to Vegas some two, three, or four times a year for many years. I usually stayed at the old Frontier, but stayed at other hotel/casinos too and gambled at most of them. I loved it! I had a good time and was a good enough blackjack player to usually be able to play for a long time and maybe make a little money. I’ve gambled in a few other casinos too, but Vegas is my favorite place. But I had not been in a long time. So I was rusty. The place was fairly big. Not very many tables, but a million slot machines. We decided to start off with that and break her in gently. And she did well! Won some money. Slots have never been kind to me; I’m a blackjack player. After awhile we walked around looking at the tables. Not many cheap tables. They had two $10 tables. That was it. Everything else was $15, $25, and $50 minimum tables. That ticked me off. I don’t have that kind of money to lose! At the Frontier in Vegas, where I used to stay, they had $1 and $3 tables. They were very popular. The other casinos had $5 tables. Caesar’s Palace had $10 tables. I realize that was a long time ago, but it gets worse. We went to eat lunch. We paid with the money Gretchen had made from slots. When we came back out, the $10 tables were gone and there were now only two crowded $15 tables. Everything else had been turned into a $25 table! Assholes! While Gretchen played quarter slots and won $40, I wandered around all the tables looking for an empty chair anywhere for a half hour. Finally, as I was about to give up, a seat at one of the $25 tables opened up and I jumped in! Then I found out why it opened up. The dealer was killing everybody. I got a 12 on my first hand and the dealer got a blackjack. Should have walked away then. I’m a fairly decent blackjack player. I’ve won some decent money at it and have been able to stay in games for many hours. The dealer demolished me on four straight hands. And everyone else. I hated her. She owned us. I finally won a hand. Someone else left and I quickly urged Gretchen to jump in cause she’s never played and I didn’t want her to leave a casino without having tried blackjack. So we both lost the next round. Then we each won a round. Then they changed dealers and everyone breathed a sigh of relief. But the new one was just about as bad. Won some, lost some. Finally we decided to leave while we still had something to leave with. When we cashed out our chips and slots credits, we ended up actually walking out of there with a little more money than we entered with, thanks to Gretchen’s great slots winnings. Seriously, that was the worst blackjack I’ve ever played! And aside from one time playing at a $100 table in Vegas, I’ve never played at such an expensive minimum table. Oh, and there were hardly any roulette and craps tables. That was really weird. Nonetheless, we left in the black and had a good time.

Later in the day, we met her friend Cindy and Cindy’s daughter Rachel and went to Captain Dan’s restaurant for some authentic Maryland crabs. Now, I don’t eat crabs. But Gretchen does. And like most Marylanders, she’s a crab snob. No crab outside of Maryland is worth a damn. So when we’ve gone elsewhere, the crabs have sucked. So she was really looking forward to this. The restaurant was pretty small and not very attractive, but you’re there to eat, so who cares, right? Rachel got a salad while I got a BBQ sandwich. Since I live in Tennessee, I know my BBQ, and this wasn’t very good. Nor was it very much. And it came with fries, but since I’m on a diet, I only ate three or four and was left hungry. Meanwhile, Cindy and Gretchen got crab pretzels and then got 12 crabs and went for it with gusto. God, it was messy! And when they brought the bill, I was stunned. Stunned. I never knew crabs cost so much. Especially since two of four of us just got $10 orders. That dinner cost a HELL of a lot! And the service was absolutely terrible. But Gretchen was very happy with her meal, so that’s what counted and she left happy.

Thursday was Thanksgiving. We started the day by going to her parents’ house to hang out for awhile. We had fun with them and then went driving around. She took me to the town she used to work in, which was a beautiful waterfront town, and we went to other places as well. Maryland is a really nice state. Finally, we went over to the townhouse her sons share. Her oldest son cooked and we four sat around enjoying a good, healthy meal (he had lost 60 pounds on a similar diet) while talking about all sorts of things. Then it was late and we had to get back to the hotel, so that was sad.

Friday we spent with her parents. They took us to the Eastern Shore across the terrifying five mile long Bay Bridge which I’ve heard about so many years. It actually didn’t bother me too much. At all. We met some friends at a Maritime Museum and saw what we could in the time we could and then we all went to lunch in this delightful small town. We had a really nice time, although parking was at a premium. Afterwards, we drove around some more and hit some more pretty towns. In one town, we went into an antique shop and I found the copy of Mao’s book on guerrilla warfare I just reviewed a few hours ago. It was pricey, but it was a valuable find and I was excited. As it was now nighttime, we went back over the Bay Bridge, which again wasn’t too bad, and went back to a restaurant near the hotel where we shared our last meal together and said goodbye. It was a little sad.

Saturday, we both got calls at 5:10 AM from our home alarm company telling us our living room motion detector alarm had gone off. We tried not to freak out, but they called the police and we waited. And heard nothing. We called the company back and they said they were waiting to hear from the police. Finally, after about 35 minutes, I called the police and talked to them. They said they found no signs of forced entry anywhere and no broken glass, no signs of disturbance anywhere and they had left and were now writing up their report. So that was good. But what set it off? And why? Frankly, we moved to that house last year in part because our old house was broken into and robbed two years ago and we didn’t feel safe, among other things. Our two cats could have been active, but the alarm company had assured me it would take something far heavier and bigger than cats to set that alarm off, so what was it? Were the police wrong? I texted three pet sitters we had working for us, far too early. I explained the situation and asked if someone could go over there early to check things out and make sure the cats were okay. Two of them did and reported things seemed fine. But by that time, we were underway, rushing to get home. And rush we did. We got home in about nine and a half hours, which was a record, and were damn glad to see the cats and house were okay. I still have no idea what set that alarm off, but I’m going to call the company today and talk to them about it.

So that was our Thanksgiving. It was tiring, but pretty good. I didn’t get too much head pain, thank God, not as much as usual, but I had a decent amount of pain and had to take pain medication, which tired me out. But that’s the norm. It’s good to be home and back to normal, but it was also good to get away and I know it was good for Gretchen to see everyone. Hopefully it won’t be so long before we can get back next time.

 

 

 


  
  
  

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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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Health Frustrations

Posted by Scott Holstad on August 23, 2015

I’ve written about my health here before at times. I have health problems. In fact, I’m on disability for Trigeminal Neuralgia and several lumbar issues. The pain can be debilitating. Most pain medications don’t help. I’ve had to have a number of surgical procedures to help, but they’re limited in scope. I also have severe insomnia, which doesn’t help. I average about three hours of sleep a night. I used to try to take naps after lunch every day, for about an hour, so that helped, but I can’t do that anymore for some reason, so that’s gone. Well, this week I’ve gotten up between midnight and 1:30 AM six of the last seven nights, including midnight tonight. I’m so tired and so frustrated and I don’t know what to do. And I’m not asking for advice. I’ve already tried every sleep aid known. I have a sleep doctor. I currently take three sleeping pills to help. They get me to sleep. They just don’t keep me asleep.

Additionally, for well over a year now, I’ve been having nonstop head pain, different from the TN-type head pain I’ve experienced since 2010. It’s been more like extreme regular headaches. I don’t know how to describe it any better than that. And they don’t respond to anything except Percocet. I’ve been to a number of doctors about it. My pain management specialist is at a loss. She put me on two new medications in January, which I believe has helped with my TN-type pain, but not with this new pain. I went to a neurosurgeon, who didn’t really do anything. He’s ready to perform major surgery if and when I need it, but he doesn’t think I do at the moment and he’s probably right. And then last month, after pondering this for months, I went to a new neurologist. He seemed pretty good and pretty thorough and he diagnosed me with a cluster headache, which he said is also quite painful. I hadn’t known that. Apparently I have the symptoms. He put me on a couple of new medications, but I had reactions to one of them, so he took me off of it and put me on something else. I’m not, however, sure that he fully understands my situation because he seems to be treating this like a standard TN-type head pain, or in this case, cluster head pain, when in point of fact, they’re standard bilateral headaches that are extremely severe. I don’t know what to do.

To make matters worse, I’ve been experiencing ungodly back pain for about three months now. It starts about lunchtime and worsens throughout the afternoon into the evening. I usually take over the counter pain medications, which don’t do anything. Then I take a Meloxicam, which doesn’t do anything. Like my head pain, the only pain medication my back pain responds to is Percocet, and even then, not always and not fully. It’s very frustrating. And I don’t know what to do about it. I have no idea what’s causing it and I can’t tell if it’s skeletal or muscular. I went and had a massage a couple of weeks ago. It helped for a couple of days. I have an orthopedist, and I’ve thought about making an appointment, but I honestly don’t know what they could tell me. I don’t know that I’ve done anything new to my back and if they take x-rays or do another MRI and it shows nothing conclusive, I’m going to feel like a moron. All I know is it hurts to sit, walk, and stand. And it’s freaking horrible. Most days, it’s about an 8 or 9 out of 10. I haven’t even mentioned it to my primary care physician because I’m sure he can’t do anything about it. He would just tell me to make an appointment with my orthopedist. *sigh* So most days, I can’t do shit. I can’t go for walks. I can’t even go for rides with my wife half the time. It’s tough just to go to church and sit in the pews. I read a lot and it hurts to sit and read. I feel like a lump and it bugs the heck out of me, but I don’t know what to do.

I do have some good health news though. I’ve been overweight for far too long now. It’s largely the result of being on certain meds for years that have contributed to heavy weight gain. Well, back in 2011, my doctor put me on what I thought at the time was a low carb diet. I was wrong. I lost weight until January 2012. Then I started gaining weight and I couldn’t figure out why. By January of this year, I was a hippo. In February, my wife put me on a seriously low carb diet, which she had been on for a few months herself. It actually wasn’t that hard and it’s been good for me. So I’ve been averaging about 6 carbs per meal every day since then, whereas before I averaged about 36 carbs per meal. And I have now lost about 45 pounds, perhaps closer to 50. That’s not as impressive as some people I read about, but it still feels good. I’ve had to put five holes in my belt and buy some new pants that are three sizes smaller than my former size. I still have a long way to go, to be honest. I have a couple of target weights. I’m three pounds away from my first one. But I’m a very long ways away from my ultimate goal and I don’t know if I’ll ever reach it. But I can try, right? So this has been good and I’m grateful to Gretchen for encouraging and inspiring me to do this. She’s lost a lot of weight herself and has reached her first goal herself. Yay!

I guess that’s it for today. Cheers!

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