But such is the problem of severe nerve damage, neuralgia, and chronic bed rest. I've now spent the better part of two of the last four years on and off bed rest. Obviously, it's not enjoyable - quite the opposite. I don't really have much of a choice, since my head hurts so intensely. The pain isn't worse when I stand up or sit down or lie down, but it is so insane that even the thought of getting up and moving is impossible; sometimes, even my eyes hurt. Most days, I only get out of bed to shuffle back and forth between the bed, the kitchen, and the bathroom. I go days without leaving the house. It's not healthy, I know.
As it turns out, it's far more unhealthy and dangerous than I expected. Wednesday evening, I started having terrible pain in my left calf, just below the knee. I didn't think anything of it at first, because my pain is kind of like whack-a-mole all the time; I never know what is going to hurt, when it's going to hurt, how long the pain may last, or how severe the pain will be. When I woke up on Thursday, I felt like I was having the worst charlie horse in the world, but a million times more intense and much physically deeper. I still didn't think much of it; I simply put heat on it and wrapped it up and used an immense amount of IcyHot on it. Then I woke up on Friday and it hurt worse. Then Saturday and it hurt even worse. By then, I realised that this pain wasn't like rest of the neuralgic pain I've been dealing with; everything else was in my joints and only lasted two days at most. This was far more muscular and so much worse. So I decided that if the pain was still there on Monday, I'd phone my GP. I couldn't really walk, I couldn't put any weight on it, I couldn't engage any lower leg muscles without crying in pain.
Of course, I'm an expert worrier, and my brain always immediately locks on to 'worst possible scenario.' In my head, the worst case was DVT. Unfortunately, I have two significant risk factors - a family history (my father and his sister) and long-term immobility. When I told this to the GP, he immediately sent me downstairs to have an ultrasound. It was long and excruciating (and freeeeeeezing cold without pants on!), and it was longer than it needed to be because a) I have shit veins that are really far from the surface which make drawing blood nigh impossible, and b) my tremors get worse with the amount of pain I'm in, so my entire body was essentially vibrating. The procedure took over an hour, and then it took the doctor another two hours to phone back with results.
Good news and bad news, like always. I don't have DVT, but there are a number of small blood clots in the superficial, surface-level veins slightly below and inside my knee. My GP and the radiologist weren't overly concerned since they were small and not in any danger of breaking loose and migrating. But I'm under strict orders to take Advil every six hours, keep moving my legs as often as I can by doing 'exercises' every half and hour or so, and to come back in on Friday if the pain isn't better or come in IMMEDIATELY if the pain worsens or moves.
So I suppose it could have been worse. They decided not to put me on any blood thinners for the time being, although that may change. That's actually good, because those meds can really interfere with surgery. And what turned out to be wrong was pretty damn close to what turned out to really be wrong. Don't get me wrong - it hurts more than any words could express. But it isn't as serious as it could be. Hooray?
Monday, October 28, 2013
Sunday, October 27, 2013
When Does 'Cabin Fever' Become Something More Serious?
Although I was only formally diagnosed as bipolar II earlier this year, I've "been bipolar" far longer than that. Looking back, I was probably about 20 when I started exhibiting most of the usual symptoms of bipolar disorder; I simply didn't know what they were or what they signified. I never thought anything of them other than 'well, yeah, sometimes I get a bit out of hand and feel like I'm losing my mind and sometimes I don't remember doing things I probably shouldn't do.' But bipolar disorder is still so stigmatised in society that it never crossed my mind that there was anything wrong with me other than my depression.
It wasn't until the end of last year that I began to suspect something else was going on. The veritable buffet of anti-depressants helped a bit, but I never felt like I was on an even keel. I spent most of my time in varying stages of numbness and emotionlessness, largely unable to even bring myself to be able to care. I knew the medications weren't doing what they should, but doing anything to change that was well more effort than I was willing to put forth. But a few long, long conversations with an old friend left me suspicious of my own illness. I made the massive mistake of going to the DSM-IV and reading into bipolar disorder, which one should never, never, never, ever do. Like seriously.
So I phoned in for an appointment with the indefatigable Dr. Latimer, the world's best GP who had diagnosed my original CSF leakage years before. I explained to him how sometimes I felt that I was going completely insane, frantic, angry, aggressive, careless in addition to the depression, and how I swung between the two extremes. I know it isn't helpful to go into an appointment with your own personal diagnoses in your head (WebMD syndrome is a real thing!), but I grokked that there was something else happening that a) I didn't know what it was and b) wasn't being treated properly. Dr. Latimer listened carefully, and then said that he thought that I probably was bipolar, and we needed to start treating that as well as the depression. He added a mood stabiliser to my daily routine, and told me to come back in a month.
Within a month, I knew that the medication was working. I felt more balanced, more even. My depressive cycles tend to be really long - often upwards of five months - with short, one- or two-week manic cycles, and not much time in between. Now that I know this, I have a much better innate sense of when I'm about to skid. I found a new psychologist and therapist down here as soon as we moved. My new psychologist checked my medication history and upped the dosage of the mood stabiliser over the course of two months.
And it's a wonder how much the correct dosages of the correct medications help. I don't think I ever have or ever will feel anything resembling 'normal' - I'll never function normally or act normally in social situations, I'll always have to manage being ill, and I've accepted that over a long period of time. Now it's something I own and almost am proud of; yes, I do have a mental illness, but I'm doing as well as anyone can, considering all the other shit I deal with. I'll always struggle, but I have to laugh. I call my medications my crazy pills. I make jokes at my own expense. Because the worse I feel about myself and what's wrong with me - because there isn't anything "wrong" with me, I'm simply wired differently from most people - the worse the mental illness is and the stronger and deeper it takes hold.
I was doing surprisingly well with therapy and my new medications. Until this occipital neuralgia reared its ugly head again. Then suddenly I'm faced with the loss of most of my coping mechanisms for both depression and mania. I can't go for a run when I'm stressed. It hurts my neck and my eyes to read for more than about half an hour at a time. I can't drive with the tremors and blackouts, so I can't get to therapy. I can't even take the dog for a walk because I can't move my head. As this started, I was dead convinced I was about to skid face-first into the Marianas Trench of depression; all the warning signs pointed to it. But with the right meds, I skipped over it. I had a few weeks when I felt generally "urrrrrrrghhhhh" but it was nothing compared to my usual depressive cycle. Now the mania is setting in, and it's worse than it's ever been. I'm used to always running fairly high on the anxiety scale and having my body be in 'flight' mode a significant percentage of the time. But now it's all the time. I have terrible jitters in addition to the tremors. Spending all the time in bed takes away from anything enjoyable that I might do otherwise, so I get extremely fidgety. Then I get angry about being stuck in bed and fidgety, and that's its own downward spiral. My mind races at a million miles an hour, so fast that many times I can't even process or understand what I'm thinking and what's happening in my head. I'm getting careless about myself; I know I shouldn't get out of bed, but I can't stay in bed so I get up and then fall down and bang into things and make my head hurt even more. With the medications, I know I shouldn't drink much, but again, I don't care and I do it anyway because it lets me forget for an hour or two at a time.
I've never really thought that I was a danger to myself. I'm passively suicidal, but not actively so - I'm far too much of a wuss to ever kill myself, but it would be great to go to sleep and never wake up again. But the longer this mania lasts as I get sicker, I can't be sure that I'll be able to keep it all together. Don't worry - I'm still a pansy. It's just getting harder and harder with every passing day to keep the mania under control.
It wasn't until the end of last year that I began to suspect something else was going on. The veritable buffet of anti-depressants helped a bit, but I never felt like I was on an even keel. I spent most of my time in varying stages of numbness and emotionlessness, largely unable to even bring myself to be able to care. I knew the medications weren't doing what they should, but doing anything to change that was well more effort than I was willing to put forth. But a few long, long conversations with an old friend left me suspicious of my own illness. I made the massive mistake of going to the DSM-IV and reading into bipolar disorder, which one should never, never, never, ever do. Like seriously.
So I phoned in for an appointment with the indefatigable Dr. Latimer, the world's best GP who had diagnosed my original CSF leakage years before. I explained to him how sometimes I felt that I was going completely insane, frantic, angry, aggressive, careless in addition to the depression, and how I swung between the two extremes. I know it isn't helpful to go into an appointment with your own personal diagnoses in your head (WebMD syndrome is a real thing!), but I grokked that there was something else happening that a) I didn't know what it was and b) wasn't being treated properly. Dr. Latimer listened carefully, and then said that he thought that I probably was bipolar, and we needed to start treating that as well as the depression. He added a mood stabiliser to my daily routine, and told me to come back in a month.
Within a month, I knew that the medication was working. I felt more balanced, more even. My depressive cycles tend to be really long - often upwards of five months - with short, one- or two-week manic cycles, and not much time in between. Now that I know this, I have a much better innate sense of when I'm about to skid. I found a new psychologist and therapist down here as soon as we moved. My new psychologist checked my medication history and upped the dosage of the mood stabiliser over the course of two months.
And it's a wonder how much the correct dosages of the correct medications help. I don't think I ever have or ever will feel anything resembling 'normal' - I'll never function normally or act normally in social situations, I'll always have to manage being ill, and I've accepted that over a long period of time. Now it's something I own and almost am proud of; yes, I do have a mental illness, but I'm doing as well as anyone can, considering all the other shit I deal with. I'll always struggle, but I have to laugh. I call my medications my crazy pills. I make jokes at my own expense. Because the worse I feel about myself and what's wrong with me - because there isn't anything "wrong" with me, I'm simply wired differently from most people - the worse the mental illness is and the stronger and deeper it takes hold.
I was doing surprisingly well with therapy and my new medications. Until this occipital neuralgia reared its ugly head again. Then suddenly I'm faced with the loss of most of my coping mechanisms for both depression and mania. I can't go for a run when I'm stressed. It hurts my neck and my eyes to read for more than about half an hour at a time. I can't drive with the tremors and blackouts, so I can't get to therapy. I can't even take the dog for a walk because I can't move my head. As this started, I was dead convinced I was about to skid face-first into the Marianas Trench of depression; all the warning signs pointed to it. But with the right meds, I skipped over it. I had a few weeks when I felt generally "urrrrrrrghhhhh" but it was nothing compared to my usual depressive cycle. Now the mania is setting in, and it's worse than it's ever been. I'm used to always running fairly high on the anxiety scale and having my body be in 'flight' mode a significant percentage of the time. But now it's all the time. I have terrible jitters in addition to the tremors. Spending all the time in bed takes away from anything enjoyable that I might do otherwise, so I get extremely fidgety. Then I get angry about being stuck in bed and fidgety, and that's its own downward spiral. My mind races at a million miles an hour, so fast that many times I can't even process or understand what I'm thinking and what's happening in my head. I'm getting careless about myself; I know I shouldn't get out of bed, but I can't stay in bed so I get up and then fall down and bang into things and make my head hurt even more. With the medications, I know I shouldn't drink much, but again, I don't care and I do it anyway because it lets me forget for an hour or two at a time.
I've never really thought that I was a danger to myself. I'm passively suicidal, but not actively so - I'm far too much of a wuss to ever kill myself, but it would be great to go to sleep and never wake up again. But the longer this mania lasts as I get sicker, I can't be sure that I'll be able to keep it all together. Don't worry - I'm still a pansy. It's just getting harder and harder with every passing day to keep the mania under control.
Friday, October 25, 2013
Today's Pain Brought to You by...
My left knee-calf and my right shoulder. Nothing like waking up at 2AM to both spasming. I have to do this weird skip-hop-walk thing because I can barely put any weight on it. Also, flamingo-ing. Whee.
Tuesday, October 22, 2013
Wait, What? Something Good Happened?
So yesterday was the all-important consultation with Dr. Ducic, *the* expert in nerve decompression surgery for occipital neuralgia; he's the one that developed the procedure. If you're going to have surgery in your head, you want the best, the one who's been doing it the longest, the one with the best success rates.
The problem with that was the 6-ish hour drive home. At the moment, I am physically incapable of being comfortable. It doesn't matter how I prop or wedge myself up or how many pillows I use, every position I try to sit / lie down / relax in hurts some part of me. Add into that mix a long car ride and a Worf that doesn't like to stay still in the car, and it equals extreme pain. Luckily, we stopped in Charlottesville to see a friend for lunch, so we broke the trip up, but by the time we made it home, I was in so much pain that I could barely stand up to get out of the car and walk inside. Needless to say, I immediately went upstairs and fell face-first into bed. Even the thirty minute drive to the doctor's office was excruciating. And no pain pills means that it's simply going to hurt and I can't do anything about it at all. Really, it's super funtime.
Anyway, after the typical wait-forever-for-the-doctor-to-see-you routine, Dr. Ducic finally came in. I don't know what I was expecting - nothing, really, I guess - but he is so humble and soft-spoken and kind. It would be quite easy for someone of his skill and renown to become egotistical or arrogant, but he's the farthest from. He asked a few questions and poked around my head for a minute to check where I flinched in pain, then stepped back across the room.
Then, in a blur that took me a good few seconds to process, I heard what I'd been longing to hear but couldn't bring myself to hope for or be excited from. He looked me straight in the eye and said something along the lines of "Okay. Let's get this underway. Let me show you what I'm going to do for you." I know my memory is shit right now, but I was too stunned to even process what he said.
He's going to do my surgery. I won't be in pain anymore. What's going to happen is that he'll put me under with a general anesthetic to make two small, 2" long incision right at the base of my skull (and without having to shave any of my hair). Then he'll cut away some of the muscle tissue around the greater occipital nerve so that it has more room to swell without being constricted. He'll also completely remove the lesser occipital nerve, so there will be some areas of numbness / no feeling behind my ears. Frankly, I'm totally okay with no feeling at all over pain!
The problem with that was the 6-ish hour drive home. At the moment, I am physically incapable of being comfortable. It doesn't matter how I prop or wedge myself up or how many pillows I use, every position I try to sit / lie down / relax in hurts some part of me. Add into that mix a long car ride and a Worf that doesn't like to stay still in the car, and it equals extreme pain. Luckily, we stopped in Charlottesville to see a friend for lunch, so we broke the trip up, but by the time we made it home, I was in so much pain that I could barely stand up to get out of the car and walk inside. Needless to say, I immediately went upstairs and fell face-first into bed. Even the thirty minute drive to the doctor's office was excruciating. And no pain pills means that it's simply going to hurt and I can't do anything about it at all. Really, it's super funtime.
Anyway, after the typical wait-forever-for-the-doctor-to-see-you routine, Dr. Ducic finally came in. I don't know what I was expecting - nothing, really, I guess - but he is so humble and soft-spoken and kind. It would be quite easy for someone of his skill and renown to become egotistical or arrogant, but he's the farthest from. He asked a few questions and poked around my head for a minute to check where I flinched in pain, then stepped back across the room.
Then, in a blur that took me a good few seconds to process, I heard what I'd been longing to hear but couldn't bring myself to hope for or be excited from. He looked me straight in the eye and said something along the lines of "Okay. Let's get this underway. Let me show you what I'm going to do for you." I know my memory is shit right now, but I was too stunned to even process what he said.
He's going to do my surgery. I won't be in pain anymore. What's going to happen is that he'll put me under with a general anesthetic to make two small, 2" long incision right at the base of my skull (and without having to shave any of my hair). Then he'll cut away some of the muscle tissue around the greater occipital nerve so that it has more room to swell without being constricted. He'll also completely remove the lesser occipital nerve, so there will be some areas of numbness / no feeling behind my ears. Frankly, I'm totally okay with no feeling at all over pain!
This procedure works for between 80-90% of his patients. For those who don't have complete or significant relief - all of maybe 15% of his patients - he will go back in and remove all of the greater occipital nerve, leaving virtually no feeling at all in the back of the head. However, that's a slightly more invasive procedure, and since so many people have such marked improvement, he doesn't like to do that removal without first trying the less severe version; I think that's perfectly fair.
But right now, we have a number of obstacles still standing in our way.
1. He's booked into January. Because of my bipolar and anxiety diagnoses, he actually triaged me further up; I guess this is the only time I'm glad to be bipolar.
2. He's moving offices as of Jan 1. It'll be nice not to have to go into DC to MedStar G'town for the procedure, but moving is time-consuming and takes away from other things that need to be done - like his surgeries.
3. Insurance. It's kind of sketch to begin with, as many insurance companies consider the procedure an "experimental" one and don't like to cover it. I don't understand it at all, as the success rates are high and one procedure can easily 'cure' a patient so they won't require treatment again for this problem, so one would think it was a long-term cost-saving option. Unfortunately, my insurance company is one of those that tends to fight paying the procedure, although it does depend on which state the insurance runs through. It's entirely possible that they may decline to pay at all. That'll leave the only options as a) self-pay, or b) don't have the surgery. Best estimates run around $15,000 out of pocket, though that might go down a bit with a surgical center instead of a hospital. I know Patrick and I couldn't pay that under any circumstances; our parents are willing to help out, but I don't think I can ask or expect that of them. Luckily, Dr. Ducic's staff takes care of the pre-authorization nonsense for their patients, as they have better luck than the patients themselves.
4. Scheduling. They don't schedule you in until the insurance bullshit is worked out.
So anyway. This is the first positive news I've had in many, many months. I'm more relieved than words that Dr. Ducic has agreed to perform this surgery on me. But I have so much else to worry about in the meanwhile. And I don't wait well. The end is in sight, but it's going to be a long, trying three months.
Thursday, October 17, 2013
Part of the Game, Solved
After the back-and-forth phone tag nonsense that accompanies every doctor's appointment and nurse's visit and insurance company mayhem; and the infuriating inability to actually get in contact with the people you need to contact about a million different things; and my complete lack of patience and Patrick's incredible levels of frustration and anger...
I have my surgical consultation / pre-operation appointment on Monday at 2.45 with Dr. Ducic. He essentially triages his patients, so it could still be a while (like, January) before the actual surgery, or it could be as soon as next month. It all depends on his current case load and everyone's duration and severity of pain. Being as I'm completely and utterly debilitated and have spent about 2 1/2 of the last four years on bed rest or on restrictions, I'd like to think the surgery can happen sooner than later.
I have to go to my regular neurologist here so I can have six or eight shots into the back of my skull so that I can even think about bearing the almost six-hour car ride home. It will be a fun trip up there with a dog with fleas, a cat with fleas, and a Bina who may or may not be able to actually sit upright for any duration of the trip.
This part of waiting sucks big time, too. I know it's coming, but when? Can it be soon? I hate not being in control of what is happening to me.
I have my surgical consultation / pre-operation appointment on Monday at 2.45 with Dr. Ducic. He essentially triages his patients, so it could still be a while (like, January) before the actual surgery, or it could be as soon as next month. It all depends on his current case load and everyone's duration and severity of pain. Being as I'm completely and utterly debilitated and have spent about 2 1/2 of the last four years on bed rest or on restrictions, I'd like to think the surgery can happen sooner than later.
I have to go to my regular neurologist here so I can have six or eight shots into the back of my skull so that I can even think about bearing the almost six-hour car ride home. It will be a fun trip up there with a dog with fleas, a cat with fleas, and a Bina who may or may not be able to actually sit upright for any duration of the trip.
This part of waiting sucks big time, too. I know it's coming, but when? Can it be soon? I hate not being in control of what is happening to me.
Wednesday, October 16, 2013
The Games
Every morning feels like some sick, perverted game show of "Where am I Going to Hurt Today?!" I never know from one day to the next where the neuralgia and tremors may strike. Some days it's bilateral; other days it's in the diodes down the left side of my body (as Marvin says). Yesterday it was my knees and ankles. Today it's all in my shoulders and elbows, leaving my essentially unable to move my upper body. Oh yeah, and my head hurts too, since my last injections were on Friday morning. Where's it going to hurt tomorrow? No one knows! At least the tremors in my right hand and lower arm are predictable - it's all the time.
Then there's the waiting game. Patrick heard back from Dr Ducic on Monday afternoon that I've been accepted as a candidate for his nerve decompression surgery. Now we're in the submit all the paperwork and wait for an appointment stage. Frankly, it's worse than when we hadn't heard back yet.
I can't even permit myself to have any sense of hope or optimism. I've always been the type to not have expectations so I don't get let down; if I do have any expectations I plan for the best. That way, if something good happens I can enjoy it. It's easier that way and I get hurt less often and less severely.
Really, I'm not having any fun at all.
Then there's the waiting game. Patrick heard back from Dr Ducic on Monday afternoon that I've been accepted as a candidate for his nerve decompression surgery. Now we're in the submit all the paperwork and wait for an appointment stage. Frankly, it's worse than when we hadn't heard back yet.
I can't even permit myself to have any sense of hope or optimism. I've always been the type to not have expectations so I don't get let down; if I do have any expectations I plan for the best. That way, if something good happens I can enjoy it. It's easier that way and I get hurt less often and less severely.
Really, I'm not having any fun at all.
Monday, October 7, 2013
The Other Physical Problems
Like the second bout, I've started experiencing a number of other physical symptoms that can only be related to the occipital neuralgia and the original spinal tap.
About two and a half weeks ago, I noticed that my right arm was extremely twitchy. At first, I didn't think anything of it; I knew that some anti-depressant and anti-seizure medications can cause some tremors. I went through the side effects of the medications I'm currently on, and found that only one of them has been noted to cause twitches and tremors, and only in less than 1% of reported cases of side effects. As the days went on, the tremors became worse and worse. Now it's so bad that I cannot hold anything in my right hand because I cannot keep a grip on it; drinks slosh out of my cups, pens go all haywire across a page, my cell phone ends up in my lap or on the phone. At first, it wasn't painful, more of an annoyance. Over the last week it's become quite painful - the muscles are always tense and moving, and it's exhausting.
Then about a week and a half ago, I was starting to get super achy all over. I didn't think anything of it at the time, because it happened during both the first and second bouts of this. I knew that the pain would start creeping down from my shoulders; I just didn't know when. Then last Saturday morning, I woke up at about 3.30AM (which, unfortunately, is my usual wake-up time these days), in such excruciating pain that I couldn't breathe or yell for help. My knees felt like they were being stabbed with poisoned, hot daggers down the muscles from right above my kneecaps to halfway down my thighs. It would pulse for ten or twenty seconds, then give me a 'break' to recover in which I could only sob and gasp, before the pain came again. This went on for hours. Then it went on all day. Then it went on all night. I didn't sleep at all Saturday night; I could only doze in and out consciousness between cycles. Sometimes I'd get twenty minutes between the pains; sometimes I wouldn't even get a minute's break. It didn't matter if I was moving or not, if I was standing or sitting or lying down. Nothing changed the intensity or the frequency.
At first, I blamed myself, because I'd felt well enough to go out for a bit on Friday night and managed to stand for two hours; I thought maybe my knees were simply staging a revolt because they hadn't been used much in a month. But as Saturday became Sunday, it was clear something else was wrong. We needed to go to Costco for the important stuffs, and I was already well gone insane, so I said I'd go with Patrick because I had to get out of the house or I'd break something. I nearly fell over more times than I can count in the shop; I kept having to stop and try not to scream in pain. It wasn't the best idea I'd ever had.
Then when I woke up on Monday morning, again around 3.30, I could add my right shoulder to the list. And the pain was spreading down from my knees into my ankles. Over the course of the week, it was from my shoulder into my right hand. My left arm hasn't troubled me yet. We'll see. I frantically called my neurologist because all these new, painful symptoms were appearing in such short succession, and seemed to be radiating out from the core. Dr. Crowell ordered a full battery of blood tests looking for any autoimmune problems, but all the tests came back clear. I hate when that happens; I always hope there's something wrong that can be seen in the bloodwork and then can be immediately treated with meds. Not my luck.
Right now, all we have to go on is damage not simply to the occipital nerve, but to the other nerves that route through the Atlas/C1 - Axis/C2 vertebra. All of the spinal and cervical nerves pass through this tiny spot. All of them. And because it's such a compact space, damage to any one nerve can cause damage to other nerves. When one nerve is essentially permanently damaged and inflamed, it puts pressure on the other nerves around it. Those nerves then start freaking out, sending and receiving incorrect electrical impulses to/from the rest of the body. And there is nothing anyone can do about it because the original problem - a swollen, inflamed occipital nerve, can't really be treated; all anyone can do is mitigate the symptoms.
I really, really wish I could take any painkillers. At this point, I'd gladly stop my anti-depressant and mood stabilisers for a while until I can not be in pain.
About two and a half weeks ago, I noticed that my right arm was extremely twitchy. At first, I didn't think anything of it; I knew that some anti-depressant and anti-seizure medications can cause some tremors. I went through the side effects of the medications I'm currently on, and found that only one of them has been noted to cause twitches and tremors, and only in less than 1% of reported cases of side effects. As the days went on, the tremors became worse and worse. Now it's so bad that I cannot hold anything in my right hand because I cannot keep a grip on it; drinks slosh out of my cups, pens go all haywire across a page, my cell phone ends up in my lap or on the phone. At first, it wasn't painful, more of an annoyance. Over the last week it's become quite painful - the muscles are always tense and moving, and it's exhausting.
Then about a week and a half ago, I was starting to get super achy all over. I didn't think anything of it at the time, because it happened during both the first and second bouts of this. I knew that the pain would start creeping down from my shoulders; I just didn't know when. Then last Saturday morning, I woke up at about 3.30AM (which, unfortunately, is my usual wake-up time these days), in such excruciating pain that I couldn't breathe or yell for help. My knees felt like they were being stabbed with poisoned, hot daggers down the muscles from right above my kneecaps to halfway down my thighs. It would pulse for ten or twenty seconds, then give me a 'break' to recover in which I could only sob and gasp, before the pain came again. This went on for hours. Then it went on all day. Then it went on all night. I didn't sleep at all Saturday night; I could only doze in and out consciousness between cycles. Sometimes I'd get twenty minutes between the pains; sometimes I wouldn't even get a minute's break. It didn't matter if I was moving or not, if I was standing or sitting or lying down. Nothing changed the intensity or the frequency.
At first, I blamed myself, because I'd felt well enough to go out for a bit on Friday night and managed to stand for two hours; I thought maybe my knees were simply staging a revolt because they hadn't been used much in a month. But as Saturday became Sunday, it was clear something else was wrong. We needed to go to Costco for the important stuffs, and I was already well gone insane, so I said I'd go with Patrick because I had to get out of the house or I'd break something. I nearly fell over more times than I can count in the shop; I kept having to stop and try not to scream in pain. It wasn't the best idea I'd ever had.
Then when I woke up on Monday morning, again around 3.30, I could add my right shoulder to the list. And the pain was spreading down from my knees into my ankles. Over the course of the week, it was from my shoulder into my right hand. My left arm hasn't troubled me yet. We'll see. I frantically called my neurologist because all these new, painful symptoms were appearing in such short succession, and seemed to be radiating out from the core. Dr. Crowell ordered a full battery of blood tests looking for any autoimmune problems, but all the tests came back clear. I hate when that happens; I always hope there's something wrong that can be seen in the bloodwork and then can be immediately treated with meds. Not my luck.
Right now, all we have to go on is damage not simply to the occipital nerve, but to the other nerves that route through the Atlas/C1 - Axis/C2 vertebra. All of the spinal and cervical nerves pass through this tiny spot. All of them. And because it's such a compact space, damage to any one nerve can cause damage to other nerves. When one nerve is essentially permanently damaged and inflamed, it puts pressure on the other nerves around it. Those nerves then start freaking out, sending and receiving incorrect electrical impulses to/from the rest of the body. And there is nothing anyone can do about it because the original problem - a swollen, inflamed occipital nerve, can't really be treated; all anyone can do is mitigate the symptoms.
I really, really wish I could take any painkillers. At this point, I'd gladly stop my anti-depressant and mood stabilisers for a while until I can not be in pain.
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