Spring blues

We are having some volitile spring weather which is giving me some volitile migraine attacks.  Also giving a case of the Guilts as well, because I missed a day of work last week and a day the week before that.  I miss too damn much and I hope the Topamax will put an end of that and I hope so hard I think I might be thinking it is working better than it is.  But I will go up to the next dosage and see.  Spring also makes it so damn light outside.  I hate it.  Bah humbug spring. 

Fibromyalgia

Fibromyaliga: Say What? Here is a short article I wrote about Fibromyalgia to go alone with my other basic migraine one.  Thought I ought to have one showing the FMS basics as well, since it is a confusing one to explain sometimes.

Fibromyalgia Fustrations

Fibromyalgia is what I would call one of those syndromes that is not really understood, even by doctors, there is no known cause and no real treatment for it.  It has numerous symptoms and it is like a house of cards... it is triggered in the brain and then the brain sends out the constant nerve signal of pain, pain, pain that just never ends, you get this constant fatigue, insomnia, what people call 'fibro' fog which is poor consentration and short term memory problems and then just numerous symptoms cascade down from there as various different systems of the body are affected by the overall nervous system fatigue.  It is definately the root of my unhealthy tree and it is the most likely cause to why my migraines are chronic and so unresponsive to treatment.  I have described in years past where I have had trouble walking for several months due to the sudden and inexplicable pain and weakness in the tendons and ligaments in my feet, or the crippling pain in my wrists for several months that is like carpal tunnel but wasn't but I needed braces for a that time and had difficulty with pretty much everything and couldn't put any pressure on my hands at all.  Or times when i couldn't walk more than ten minutes without being crippled by pain in my hips and knees that just got worse and worse until I could only do an agonizing slow shuffle movement.  Those are incidents over and above the normal everyday baseline all over the body baseline pain that fluctuates based on activity, position of the body, sleep and weather.  It is also a condition that defines Invisible Disability.  Because people don't understand what it is.  Doctors don't know how to treat it.   Workplaces are bias about it.  No one can see any of the symptoms and there as so damned many of them people think your just making them up until you just don't tell anyone you have the condition any more.

I lived with this symdrome for a long time without any treatment at all because as I said doctors don't much get it and back in the day there wasn't any treatment to offer... and they are not much into offer any alternative solutions.  So you have to figure out how to deal with it on your own.  And I pretty much did, except for the times when it would flare up, in which case you just deal with being temporarily crippled for several months.  Then Lyrica came out and I still was on no treatment because I wasn't being treated for fibro, it was just ignored.  But I was being treated for migraines, pretty aggressively at that point and my neuro tossed Lyrica in the mix as a preventative simply because it was a 2 for the price of 1.  It was an awesome medication for fibromyalgia.  Seriously awesome.  Baseline pain was reduced.  I could walk farther with less immediate pain and less pain afterwards... which meant I could actually do things like mild yoga with less immediate pain and fatigue and less lingering pain afterwards.  It also reduced the flare ups of those spontanous bouts of horrible muscle whatever it is crippling pain, not that flare ups do not occur, but they are not crippling and do not last for several months.  On my last vacation I was able to walk all over the place and enjoy myself and it was a profound difference.  Absolutely amazing.

So it really messed with me when I got nerve damage on my hand.  My neuro said from the constand migraines, which are neurological.  And he is likely right.  Hell, maybe it the nerve damage could be a comorbid condition triggered by the fibromyalgia since that is also neurlogical, that is just as likely.  Not that is really matters at this point.  What worried me was the possibility it was caused as a side effect from the Lyrica.  I have been reassured by a doctor and a pharmacist that despite what I located on the net, whatever long term study what found that may cause neuropathy from Lyrica use it is not sited as a side effect at all and they would update doctors and pharmacists if it was a concern.  So maybe it is less likely to be a cause.  The doctor I talked to said that I should consider that if I took myself off the Lyrica that I would have nothing to replace it with and that would in the long run cause more damage.  I realized it would cause pain, I am quite aware it was going to cause pain... and was going to reduce it very slowly because the pain I rememebered dealing with might in fact be worse than I remember now that I'm not dealing with it on a daily basis, so might be too high a price to pay.  But the doctor reminded me of what the drug is actually doing, not just what I feel as a result... and that is dampening that constant nerve signal being sent out to the nerves from FMS... and if I were not on the Lyrica that is what would happen and that might be damaging in the long run.  Which got me thinking.  I may not think of FMS as a condition that actually physically cripples, because it is so discarded by doctors, but when left untreated that house of cards effect does cause a great deal of damage and I wonder what that hyped up nervous system being on super drive might cause long term.  Then I got to wondering about this stupid neuropathy and my fear it might get worse, well, Lyrica being what it does is also used to treat peripheral neuropathy and by going off it, since I also have FMS, I might just make it way, way, way worse.  And, by that I mean, I had reduced by dose of Lyrica as a trial of 50mg for three weeks while I waited to discuss further with my doc... and the right arm, the one with the neuropathy got weaker and pain is now shooting up it.  Also pain in my knees, shoulders and general aches have increased substantially leading me to believe going off the Lyrica altogether would be extremely unpleasant.  Perhaps then, the Lyrica might be making the neuropathy better than it would be otherwise.  Or one can hope.  This doc said, it is better not to rock the boat, expecially when I am currently on a new medication for migraines and it is better to focus on managing them... (like that is ever going to happen... but then, would I really want to deal with constant migraines and horrific FMS pain and neuropathy pain?)

So stick with the Lyrica to manage the Fibromyalgia seems like an okay plan to me for now.  What I don't like about this whole thing is that I still don't know what caused the nerve damage in the first place, whether it was isolated or could potentially continue to progress, or whether it could happen again.  If I don't know the cause then I obviously can't know if it will happen again.  This doctor I saw said whether it was migraines or fibromyaliga that caused it, both being likely candidates being nerve related disorders, it doesn't matter she said my concerns about it progressing are real.  Having happened means it could very well progress but stopping the Lyrica is the worse choice, because of the long term damage FMS could cause and besides Lyrica would benefit the situation assuming it has nothing to do with the cause.  So that was no fun to hear, but at least honest.  And that sucks because my right hand is totally gimpy, clumsy and there is not real sensation or ability to feel texture, the left is just finger tips so far but I keep feeling like it is spreading little by little.  Maybe it is and maybe the left will be the same.  Maybe that fatigue and pain in my right arm is a sign that whole area is getting worse.  As a symptom, and one that does not fit under 'migraines' or 'FMS' it is very disturbing to say the least and I'm going to have to demand some follow up by my neuro, but I have a feeling whatever answers he finds it is a little late now that it has begun.

Visual snow

I've had visual snow literally for as long as I can remember. I remember being a young kid sharing a room with my brother asking him if I saw the sparkles too and him falling sleep mid conversation... I was also an insomniac back then. Anyway, the sky was always full of sparkles... billions of white specks of light dnacing around. And so when objects are around they do look staticy with all thse sparkles behind it. Warpy even. And certain lightings make it look more static like or more warpy. I had not realized it was a 24/7 thing, I assumed it was a prolonged aura thing.

 

Went for a little trip to the ER on Monday

Always my least favourite place to be.  I worked up a wicked status migraine, which normally is no cause for alarm since I work up a wicked status migraine every month, but this one was slightly worse due to the flu I was recovering from and, also, because the pain jacknifed so high in intensity on Sunday night I literally did not get any sleep.  Literally.  Not figuratively.  Literally lay there in too much agony to get to the point of even contemplating sleep.  My head touching the pillow was too much to bear.  Made for a very, very long night.  I tried my damndest to get to sleep though.  Tried my triptan early in the evening.  Took my sleeping pill before bed.  A tramacet painkiller at about 2am, then another at 4am.  Eventually I just got up and waited for my spouse to get up so he could drive me to the ER... I didn't want to wake him, since I figured he could just drop me off and go to work and would need his sleep.  He gets up early mind you so at that point it was not a long wait.  We got to the ER about 5:30 ish. 

It actually was on of the better ER visits really.  I may have been in agony, but I was way beyond the aura phase of the migraine, so I was actually not feeling fuzzy headed or confused which I usually do, just in a boat load of pain.  It wasn't busy at all which was a plus for sure.  I got into the back right away and into a seperate room, which was great, because they shut the door, turned off the lights and just let me be until the doc arrived... so much better than being on the main floor where it is bright and noisy.  It was about a three hour wait but it was not like it usually isn't.  They asked what I usually take and I said they usually give me a toradol shot 90% of the time and the nurse asked if that usually worked, and I said no but that's what they do and I was out of ideas and severely sleep deprived.  Honestly, that is why I rarely go to the ER, its not like they listen to me and going for a treatment that only works 5% of the time isn't worth the time and pain.  When the doctor came in he asked the same thing and I gave the same response and said I usually don't even bother coming in for status migraines but this particular time I just hadn't gotten any sleep, which means the pain was going to be that mindblowingly acute all day long since nothing was working if I didn't try something, anything, different.  (I'd promised to confer with my spouse and go to the ER when I get a severe status migraine back in 2010, but I don't, but in cases where the pain begins to affect my ability to sleep I have to because then it begins to compramise my ability to reason).  He said usually in cases where a migraine ends up like that they use morphine to bring the pain back down and gravol to control the nausea.  I was fine with that, never had that before but I have had percocet to do the same thing.  He gave me the shot.  I rested for maybe fifteen minutes while it kicked in and then.... the pain just... went away.  I sort of felt an ache behind my eyes, and that flare of electrical pain when I stood and moved too fast, but other than that it was blissfully better.  A billion times more effective than toradol and without the crazy rapid heart rate thing too.  So I went home set my alarm clock for four hours of sleep... otherwise I would have slept all day and then not slept at night and got some fricken rest.  The morphine lasted longer than most painkillers I think because I didn't feel the migaine pain come back until several hours later, but when it did it was significantly reduced in intensity.  So he was right, it did bring the pain level down to normal intensity levels.  Maybe the next time I go to the ER I will just ask them for the same thing I got the last time, since if one doctor prescribed it, and it worked, they might be more likely to try it again... instead of doing the same damn thing that doesn't work over and over again.  I wish I knew what clinic that doc worked at because he sounded quite reasonable, but the fact he said that is what is usually done for a status migraine gone wild and it is never what is done at that ER makes me wonder where he usually works, because we get docs from all over.  Some of them know frightfully little about migraines, but occasionally some know a lot (I had one treat me with an older ergotomine, that is when I hadn't taken my triptan with 48 hrs, for a status migraine, with a anti-nauseau drug on a drip that worked wonders).

Anyway, migraine is back today, but status migraine is aborted because I didn't wake up with a migraine this morning.  Yay.  Just got one this afternoon.  Boo.

That is not to say toradol shots don't work on migraines, because they do, just in my case not on status migraines.  My doc suggested I ask my neuro to prescribe torodol in shot form, teach me to self administer it, to be used in cases where I have an acute migraine that doesn't respond to my triptan... prior to it becoming a status migraine.  Which is a damned good idea, because a) I can't take anti-inflammatories in pill form anymore and b) anti-inflamatories are one of the best ways to treat my hormonally triggered migraines.  For some reason once my brain is stuck in migraine mode for longer than three days not much of anything works unless you can get me to sleep, which often doesn't work even with sleeping pills, or just use a pain killer to control the pain long enough for me to get some sleep or just let it run its course (and apparently hope you don't wake up with nerve damage).

One thing I hate about Fibromyalgia...

Is the looong recovery from any illness.  In this particular case I'm talking about a flu, or a cold, with stomach flu symtpoms, still not sure what it was, only that I got quite a bit sicker as the week went on.  Quite a bit more dehydrated due to the flu symptoms as well and just couldn't keep up with my fluid intake, so got even more sick and then got a killer, killer migraine on Friday that didn't go away and landed me in the ER on Monday.  Which is fine, but the flu or anything the messes with my digestive system just upsets that delicate balance there is with FMS, because of the issues with IBS being a symptom and all.  So I can't even tell if I'm still sick or not.  But I can definately say it sure feels like I am.  It is like getting food poisoning every damn time I eat anything, which as I said, makes it damn hard to keep hydrated.  I don't think I'm still sick because I've shaken most of the cold symptoms so really it is a case of getting my stomach to agree with actually eating food again.

Neuropathy, doubting the doc and adverse side effects

The peripheral neuropathy I have in my right hand, and a little in my left hand is not in doubt.  The nerve damage is there and it is a given.  However, how it happened and why it happened are really debatable.  My neurologist definitely diagnosed it correctly but stating it was from the frequency of migraines I get, while possible, is guesswork given he didn't do anything to confirm that.  Plus, that is freaky... I get migraines ALL the time and the fact that ONE migraine cause permanent nerve damage in my entire right hand and half the left is of great concern given it could happen any other time.  And I hate it when doctors do that.  Which happens a great deal with fibromyalgia... 'of thats just from the FMS' and it ends up being hypothyrodism, or asthma and they are all 'my bad' after things get significantly worse.  We are expected to just bow down and worship their awesome knowledge but they can be wrong and they are definitely wrong at times.  However, how could you assume a migraine caused that nerve damage when the progression of the neuropathy continued after the migraine ceased?  And the migraine aura phase and the beginning of the migraine itself began days before the neuropathy began?  Why correlate them at all when migraines for me are a regular occurrence?  It would be just as likely to say the fibromyalgia cause the neuropathy, since it is also neurological in origin and a constant condition and influence.  Or the hypothyrodism, which is actually linked to neuropathy, even if mine is mild in severity.  I don't like assumptions when he didn't even bother with any tests, although at least my primary doctor did a CAT scan.

So I did a little digging because as far as I know migraine attacks are not linked in any way to nerve damage.  Except maybe neuropathy as a comorbid condition for unexplained reasons, in which case the neuro didn't explain that and sure as hell didn't go into the fact that neuropathies can actually progress... like mine did over the span of a week and a half and may start again for all I know.  So in my case we are looking at an acquired neuropathy "Causes of acquired peripheral neuropathy include physical injury (trauma) to a nerve, tumors, toxins, autoimmune responses, nutritional deficiencies, alcoholism, and vascular and metabolic disorders. Acquired peripheral neuropathies are grouped into three broad categories: those caused by systemic disease, those caused by trauma from external agents, and those caused by infections or autoimmune disorders affecting nerve tissue. One example of an acquired peripheral neuropathy is trigeminal neuralgia (also known as tic douloureux), in which damage to the trigeminal nerve (the large nerve of the head and face) causes episodic attacks of excruciating, lightning-like pain on one side of the face. In some cases, the cause is an earlier viral infection, pressure on the nerve from a tumor or swollen blood vessel, or, infrequently, multiple sclerosis. In many cases, however, a specific cause cannot be identified. Doctors usually refer to neuropathies with no known cause as idiopathic neuropathies." - http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm#183593208

So many causes to to be eliminated here and in my case some of them could not be without further being looked into such as I have hypothyrodism and that can cause this, vitamin deficiencies can cause this, connective tissue disorders, cancers, autoimmune disorders and MS (which does concern me as MS runs in my family).  All those concern me to an extent.  And yes, I have heard people say FMS and chronic migraines make you more likely to be one of those to have the unexplained neuropathies.

BUT while I was concerned he didn't look deep enough so I looked a little deeper myself, what I found deeply concerned me.  One of the medications I am on is actually used to treat neuropathy, which initially I thought was rather a good thing, since if I have it now, I rather do not want it to spread as it freaks me out and is really not pleasant.  Then I found out.... the medication, "
Lyrica can cause peripheral neuropathy, which manifests as numbness and pain in your hands and feet. The pain of peripheral neuropathy feels like tingling or burning, according to Mayo Clinic staff. The numbness of the condition is said to feel like wearing gloves on your hands or thin socks on your feet.Read more: http://www.livestrong.com/article/119084-lyrica-side-effects-muscle-/#ixzz1o8M7fYxO

So, I'm really not feeling comfortable being on a medication that could be causing the neuropathy when I think it is the most likely of explanations, lacking any other evidence really.  And lacking any other evidence I'm not willing to risk staying on it either, since the neuro didn't point out the Lyrica as a possible cause here.  I could potentially be making things worse here and this is permanent damage we are talking about... it is not just numbness that will go away if I stop taking the med, it is nerve damage that will never go away.  Unfortunately, Lyrica is an awesome FMS medication and it is why I have been on it as long as I have.  It has done nothing for a migraine preventative so no worries about going off it on that front, but it will be... painful in other ways.  But there is another FMS drug I have not tried called Savella which looked interesting, unfortunately I believe it is yet another antidepressent style med which would suck because they just don't do well with triptans, or at least not when you have to use as many triptans as I do.  Nevertheless, I would rather find alternative ways to cope with FMS pain, like I did for decades before Lyrica, that start killing off the nerves in my hands and feet.  The only reason I started Lyrica was as a migraine preventative, it was just a happy coincidence it helped with the FMS.  In other words I like being able to be able to walk longer distances without feeling pain immediately with increasing intensity until crippled and I like that I recover faster from doing things and I like that I have slightly more endurance.... but it is not necessary.  What is necessary is that I don't have an acute migraine every day and that I can get to work every day and function.  Cutting out a medication that does not directly involve that goal doesn't bother me if it is causing an adverse affect like neuropathy, even if it is going to increase my baseline pain.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...