The stroke factor

We all know we are at increased chance of having a stroke with migraine with aura. I know the symptoms of stoke just in case, but would i know if I had one or would I think it is the migraine. And then there a mini strokes you might not even be aware of.

Conclusions Migraine with aura in midlife was associated with late-life prevalence of cerebellar infarct-like lesions on MRI. This association was statistically significant only for women. This is consistent with the hypothesis that migraine with aura in midlife is associated with late-life vascular disease in the cerebellum and in women.

Migraine Headache in Middle Age and Late-Life Brain Infarcts

Something to be careful of as we get older and the risk of stroke increases.

Side effects; always in effect before the drug

The side effects for Cymbalta hit me right of the get go, yet I have to wait three weeks to see if it does anything. All fun stuff. I have had some pretty nasty side effects in my day, but so far the Cymbalta is not too bad, not great, but not too bad. I have to take it in the morning because it is said to cause restlessness and make a person have trouble sleeping, which I thought would be fine, cause maybe that would help me stay alert in the morning. Because I like to be contrary I am instead getting yawn attacks in the afternoon and drop dead tired when I get home, which is also not so bad because a person should be tired when they go to bed. This drug is also said to cause dizziness, in fact that is the most common one they warn you about, but I have not had one touch of that. Mostly my complaint is that it upsets my stomach quite a bit, but then what doesn't? I will just have to watch that and make sure it is not one of those side effects that gets worse as you go, but it is is straight up nausea it is not a big deal and will likely fade.

This is very likely a huge coincidence, but the pain in my feet and wrists is almost gone and I have only had a very mild migraine (so mild I have not even bothered taking anything for it). I suspect it is just luck or the fact the weather improved vastly, but if it is the med then that is totally awesome... really, it is totally awesome when I get a migraine break anyway. So, all in all, this med does not seem that bad so far, considering I have usally had real bad luck with side effects in this preventative category. Usually mood related issues.

My neuro gave me drugs for Christmas!

Finally got to see my neuro. And as usually it was kind of a good/bad sort of deal. The good thing is that he is putting me Cymbalta in combination with the Lyrica. This is a darn good thing because I was quite worried he would take me off everything and start from scratch... which sounds like a good plan until I cannot function or work while he is messing around with them. It is also good that this particular drug is known to help with FMS as well... so a combo of the two that work for FMS and migraines, might just do it for both. *Crosses fingers*

The bad news is that the pain I have been having in my feet and wrists is not due to a side effect of Lyrica. He suspects, like my doc, that it is the FMS. Either a flare up, or nerve pain. This sucks because that means it is not going to go away on its own and is just that much more pain I have to deal with. Potentially this new drug might help with that.

Cymbalta has never been high on my list of meds to try for FMS or migraines, because it is an antidepressant and I've never had much luck with them. They seem to have some strong side effects with me, some that are downright frightening. But since the FMS pain is getting bad in its new and special way, it seems a med to target both is logical, especially since it is the FMS that helps makes my migraines as complicated as they are.

I really hope the combo helps decrease the frequency of these migraines because it is insanely hard to work with so many, insanely hard to do anything really. And damn draining too. I'm not asking for much... just a decrease enough to function better and not have to juggle meds everyday so I don't get rebound headaches.

I really like this neuro though. I think it is because he does get migraines, so he does understand what you are talking about and dealing with. That we have to be out in the world, there is no choice on that, but we get no awards for suffering while we do so.

So I am hoping for some positive result and few side effects. The main side effect I was warned about is dizziness and I think I can handle that... better than the less common ones of severe mood changes, seizures and the spontaneous desire to off yourself... like I need anything to make my moods more volatile.

The thing about pain is that it moves...

I swear I take something for one pain and I get pain somewhere else. My migraines have been out of control for a bit now (neuro apt in dec... counting down the days), so it has been difficult to manage, or not manage as the case may be. To make things oh so much more fun my FMS seems to be flaring up, either that or I am really low on magnesium. Anyway, loads of random muscle pain... back pain, neck pain, leg pain and foot arch pain... all of which shifts around so that one area is way worse than the other. I blamed the foot arch pain on Lyrica, but my doc insists side effects do not come back after being on a med two years... yet did not explain the pain. Makes it hard to walk sometimes... just a painful shuffle. So I bought those fake arch foot inserts for work and they seem to dim the pain significantly while I am wearing them but it comes back four times as bad when I am not? What is up with that. I am going to have to wear those shoes all the time at this rate. I could try and explain why my feet hurt like this, but what is the point? One more area of pain to add to the whole picture of pain that I am. Most of which i just ignore, but damn walking all day with such pain in your arch sucks. I think I have out pained my painkillers, because they are not handling the migraines let alone all the other pains (they are for migraines, but sometimes you get lucky and they are good enough to dim other pains as well).

I also quit smoking by using Champix... but will have to stay on that med for a bit, since the habit to smoke is really hard to kick. When I get a bad migraine at work and can do little about it I crave a smoke bad. Which means not smoking is increasing my use of pain killers.... but decreasing my use of symbicort. I am sure that balances out somehow.

Bad migraine flare today...

I missed work today... and actually it seemed my body made up my mind before I did, since I failed to hear my alarm ring for forty minutes and woke up already late.  I remember waking up really slow wondering what the noise was and was shocked to realize what time it was when I figured out it was the alarm.  It was an insanely strong migraine, so I called in sick thinking some much needed sleep might kill it and I could go in later in the day.  Nope.  Slept quite a bit and woke up with it still there, just as strong and just as mind numbing.  And I had things to do today and two meetings, so feeling guilty about that and will not have fun tomorrow.  But I just could not do it.  It was that painful.  Around 7pm it tempered a bit, likely from the painkillers doing a decent job, but I still feel like I have a bruise in my head and my stomach still has not settled.  I was really trying to not miss work until I saw my neuro in december, but so much for that plan.

This brutal migraine is the continuation of a migraine I had all yesterday that really kicked up before bed, so I did not get to sleep right away and when I did I had some vivid, chaotic and disturbing migraine nightmares.  So did not have the best sleep, which is likely why it hit me so strong in the morning.

Driving and migraines...

Yep, always a concern for the chronic migraine sufferer.  I admit it is extremely difficult to work with chronic migraines.  We all know migraines can make us incapable of doing anything, but we also know that treated migraines, or half treated migraines, or mild migraines or silent migraines... are an entirely different story.  We are expected to function with these.  Expected to because no one says we can't and does not offer us any better solution, so we do the best we can.  Likewise with a full blown migraine, driving is impossible, but in those other cases not impossible, but obviously effected.  For example my most predominate visual aura is visual snow, and it is always there, but sometimes more extreme... so I see billions of little sparks of light zig zagging, flashing and darting around in my field of vision and it makes everything rather like a monet painting and distorted.  To drive at all, I need to wear sunglasses, as this dims the visual snow.  Other most obscuring auras can be worse.  That is just on the purely visual side of things.  Pain of course is a distraction, but pain is something I have to deal with all the time, you can't rightly say I cannot in one situation and expect me to in other situations.  The migraine fog through is the worst... sometimes the lack of attention, something the tunnel thoughts, sometimes distraction and sometimes... like with forgetting words, I have forgotten the rules of the road temporarily, I certainly have problems with thinking left is right and right is left.  Sometimes I forget the names of objects, likewise sometimes I see a stop sign and forget that it means stop.  So should I drive with a migraine, heck no, do I, heck yes.  How else am I to get to work, which I am expected to do no matter how much I am suffering?

My response to the forum topic on this is:

I agree we should not drive when having a migraine. However, as I get migraines all the time, it would be hard not to when I have to get to work. I also consider myself impaired at work, but I still go. The fact is that if I am considered impaired by a migraine or migraine treatment, which I am, and therefore should not drive, then it only seems logical that if I have chronic migraines I am impaired most of the time. Yet, it is difficult to get leave from work, or get full disability for migraines, when it seems people do not consider it to be all that serious. If it is not considered a serious disability, with serious impairments, then I myself will try to 'get through' things when the migraine is not killer, or I am taking a treatment for it. If it becomes habit for me to try and function through the pain, the senory problems and the migraine mental fog, then it would not be any different for me to drive under such conditions. I have had doctors in the past say I could not do certain jobs, but no doctor has said I cannot work, which implies that I should be able to work. If they considering me capable of functioning at a job, any job, then they cannot rightly say I am incapable of driving. I would disagree, but since my vote does not always count, and I need some sort of income, I do work and therefore I also drive. I likely would not do so if there was alternative transportation where I live, because driving is not pleasant even with the mildest of migraines. There is some faulty reasoning if the law says you cannot drive with a migraine or a migraine treatment, but are somehow capable of working a full time job. It seems since driving could potentially effect other people that people make a point of it, not when things effect the person actually suffering from migraines. Still, I do agree that I should not drive most of the time and I know very well it affects my driving. The fact is, no one has ever made a point of it except me. Ironically, when I have taken a triptan and am driving I am way less impaired than if I am driving with even the mildest of migraines. Again, no doctor has said any of my medications would prevent me from driving. A further irony is that my mother is taking pain killers while awaiting for a surgery, and he doctor said she could not drive nor work while taking those pain killers... and I take stronger painkillers, triptans, preventatives on a regular basis but am essentially expected to carry on as normal. So that is exactly what I try to do.

Allrighty, I stopped procrastinating and forgeting

I finally made a neuro appointment.  My chronic migraines have been exceptionally chronic since march, or maybe before, but definately since march.  The only thing that has helped me survive work with these things is pain killers... and really, when it comes down to it they don't do enough.  I have been lately taking my abortive beyond the three times a week rule, because I forget how many times I have taken it until i start getting chest pains.  Plus triptans kick ass over pain killers any day of the week.  Still, now my lungs feel like I have a wee kick boxer in there trying to get out and that sort of piercing chest pain that is rather unpleasant.  So yesterday I did a drug free day, which, as you can imagine, was not exactly fun.  I thought a break would mean I could take a triptan today, but the side effects of that, ie the whole kick boxer in the lungs, hit me quite quickly and that suggests I need a bit of a break from that triptan.  The two options would be another triptan free day and then switch to my alternate triptan, as it does not have the same side effect, or stick to pain killers for at least a few days.  That is why I made a point of calling the neuro.  When one migraine leads right into another and I am just trying to play catch up, then I know I am on that slippery slope to hell in a hand basket. 

Unfortunately, my neuro appointment is not till Decemeber, which seems like so very long to wait.  I am having some troubles getting up and getting to work now and that is never a good sign.  I desperately want to just have a day where I can get some extra sleep, maybe sleep off the migraine and just have a fricken break.  Unfortunately, I desperately want this every day.  If I do it once I will want to do it again.  I am already calling in sick more often than I should and having some half days as well... just because sometimes I give in and just can't do it.

So I will go to the neuro in Decemeber.  Which, obviously, will not immediately help or might not help at all.  Changing my meds, I have experienced the hard way, can sometimes make things way worse.  Small adjustments may do nothing at all.  What I do know is he cannot help me the way I want to be helped.  he cannot get rid of the pain.  There will always be pain.  So, I will likely not be in a great mood after that appointment, but hopefully we will find something useful to try out.

Missing my mind today

There is a point when memory glitches are less glitches and more a state of mind, as in a permanent state of mind.  Being forgetful is one thing, but forgetting to do important things and not even remembering later is quite another.  I forgot to pay the bills last month and had no idea they were not paid until I paid them this month.  I forgot I posted my last entry on here and was going to do it again... which would have been a tad bit confusing.  I have some serious problems with facial recognition... in my line of work I meet a lot of people, associate with them for a short term and can't be expected to remember them all.  I really don't remember any of them.  I keep getting people coming in and greeting me by name and I have no clue if I know them from work or elsewhere, they don't even look vaguely familiar.  I do recognize names, although don't connect them to faces and it takes a bit of jogging to get to the point where I can connect the name to the business I did for them.  Thank god for computers.

You have to wonder, after awhile, how long your going to be able to keep functioning enough to work.  I certainly wonder.  Thirty some years to retirement and I am already struggling.  Constant migraines mean constant neurlogical problems.  Problems speaking, writing, communicating, remembering, consentrating, seeing, hearing....  Granted, sometimes, it is very noticable and difficult, sometimes impossible... but I am not even taking about complete brainless blogger days, I am talking about every day, even days that are good and the abortive worked and the pain part is not even an issue (there are days like that... damn good days)  I can pass on paper.  I do my job well enough, but it is like wading through fricken mud in my brain.  Stuff leaks through the gaps.  Literally when someone leaves my office, they fall right out of my brain... they can come back a half hour later and i have no idea who they are.  I wait for people to tell me why they are there so i can remember what the heck I am doing for them.  The reason I function is because I only see a certain amount of people per day and this rotates but is never high... so I can go through my active files daily to achieve the ends I need.  Constantly reminding myself of my work, but the people slip through the gaps.  Return customers are not return customers to me... might as well be a new one.  I suspect I repeat myself, and my conversation rollers, likely to the same people because I do not actually remember anything about the conversation, except what I have in the file.  My god, if there was not a paper trail and a computer I would be useless.  It used to be I would change my study habits or work habits to work around my health... and I still do, but I think my disability is winning on that score.  Might have to video record everything to keep up with myself.  I am the type of person that remembers what I read, which was awesome for school, but when you forget everything you hear and see it does not quite cut it.  Time seems to pass so quickly for me, but it is because there are months of time I cannot remember and most things are foggy at best.  When i think I did something recently, it could have been six months since I did it.

I have had a migraine since last Friday.  Started with a hormonal bang and then just kept going.  Same old story.... except with more nausea this round.  Then I wake up Wednesday and I am out of it.  I have a whopping morning migraine, I have nausea and for added fun vertigo.  So I call in late... because I could not remember if I had any important appointments, I did not want to call in sick, plus I could not remember the last time I called in sick, but I suspected it was recently and I like to space those out so it is not so blatantly obvious how useless I am.  So I go into work and I am thinking I must have been insane to come to that conclusion.  I was very queasy, could not walk straight, the world was spinning and I could not seem to get my eyes to focus.  It was difficult but I did manage most of the day.  How useful I was while I was there is debatable.  I got stuff done and frankly that is impressive enough.  Thing is, every migraine is different and every one of them has the potential to have some whopping neurological effects.  I can't miss too much work, ergo I work with a lot of migraines where in some way or another I am not all there.  So how long can I keep that up before it becomes that I cannot do my job?  Obviously no one in there right mind would want to work with migraines, or leave the house during the day or move, but wants and needs do not always meet.  Unfortunately I am dang close on the can and cannot line as it is.  I am taking too many medications too many times to get where I am and I have to force myself not to take one or the other in order to not take them too often, when I need them all the time... so when you have a acute migraine while at work and cannot take an abortive, that is not the sort of cannot that is acceptable since working and an acute migraine don't do well together.  I have two abortives that I switch off on, so as to confuse my brain so they work better, but you need to have a 24 hour period between abortives.  Did I mention my lack of a memory?  That goes for medications as well.  I keep to a routine when taking them, so that later when I forgot if I actually did take them I am reasonably assured I did, since I stick to that routine.  However, with abortives or painkillers, which are as needed, I do forget.  I forget if I already took an abortive in the morning and if so what time, or how many days in a row I have taken them and if I can switch to the other one or not.  I think sometimes I take them all week without remembering until i start getting all that chest pain stuff and the need for more asthma medication being the warning sign that maybe I forgot that three day rule.

The fact is I am tired.  I wade through work barely conscious and when i get home I just want to sleep.  Lately I get home and if I do not sleep, I might as well be, because I am utterly brain dead.  Zone out.  Nobody home.  I don't quite understand what is in it for me.  Work thirty more years till retirement, so I can retire, and then I will not have to suffer so much.  Umm.  That means thirty more years of suffering, not doing anything else but getting through work and living in a sort of weird timeless haze where you don't even remember a good portion of your sad sad existence.  When you consider life expectancy, which I suspect I am not on the high end of, how many years of blissful retirement do I get to make up for the torment of working from adult onward?  Ten if I am lucky?  That does not seem like a viable return for my investment.  If I were an investment the return would not be high enough to attract anyone for the risk ratio.   I need some sort of pain and suffering karma compensation so that in the next life I will be born a billionaire with perfect health and super awesome luck.

National Invisible Chronic Illness Awareness Week

Shared by Teri Robert (thank you) - and completed by me:

30 Things About My Invisible Illness, Migraine, You May Not Know

Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. Invisible illnesses are easy for "healthy" people to ignore. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here's my meme...

1. The illness I live with is: Migraine disease & Fibromyalgia

2. I was diagnosed with it in the year: 1997

3. But I had symptoms since: 1980

4. The biggest adjustment I’ve had to make is: trying to find a job I can hold.

5. Most people assume: that Migraines are "just headaches" and that FMS is just 'muscle pain'

6. The hardest part about mornings is: getting out of bed and thinking clearly

7. My favorite medical TV show is: House... wish he could figure me out.

8. A gadget I couldn’t live without is: Internet

9. The hardest part about nights is: Trying to fall asleep and get comfortable.

10. Each day I take: a fistful of meds and vitamins and pray I get through the day

11. Regarding alternative treatments I: Done that got the t-shirt, forgot I tried it and tried it again.

12. If I had to choose between an invisible illness or visible I would choose: visble... less need to explain.

13. Regarding working and career:  It is diffiuclt to have a career, or career goals when it is hard enough just to work consistently.
14. People would be surprised to know: I am in a lot more pain than it seems.

15. The hardest thing to accept about my reality has been: is that my life has become very small as I am unable to do many of the things I could or go to events.

16. Something I never thought I could do with my illness that I did was: Went on a trip to Scotland, which was far less painful than I expected, which just shows you Lyrica does do something for FMS

17. The commercials about my illness: annoy me.

18. Something I really miss doing since I was diagnosed is: too many to count.
19. It was really hard to have to give up: Going for my Phd, having children.

20. A new hobby I have taken up since my diagnosis is: same hobbies... writing.

21. If I could have one day of feeling normal again I would: Do a happy jigg and then go out and party like there is no tomorrow.
22. My illness has taught me: that there is no need to be guilty and slow down, as long as you are happy, with less pain, life does not have to be high speed and large goals.

23. Want to know a secret? One thing people say that gets under my skin is:  people who are whiners when what they are whining about (headache) when I have a (migraine) and not whining.
24. But I love it when people: want to comprehend what I go through

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.
26. When someone is diagnosed I’d like to tell them: Sucks to be you.  Seriously.  Then I say learn to pace yourself, learn to limit yourself, learn to compramise and you will save yourself some pain.
27. Something that has surprised me about living with an illness is: how much time I seem to lose.

28. The nicest thing someone did for me when I wasn’t feeling well was: when my brother and bf said I should not feel guilty, that I did not need to work until I could and it would all be well.

29. I’m involved with Invisible Illness Week because: because it promotes awareness, that it tells people they are not alone and because it is important for people to understand even without any obvious disibility an invisible disability can be crippling and life altering.

30. The fact that you read this list makes me feel: like maybe we can bridge the gap between pain and language.

Please participate if you haven't already by answering these questions on your blog to keep this going. You can find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at

If it is not one thing it is something else

This FMS pain, I assume, is what is causing pain in my feet and wrists.  I have gotten a script for an anit-inflamatory cream which helps if I apply it three times a day.  Can my doctor explain this weird flare up of specific pain... no.  So, hope it goes away.  But it is not just that.  I find it difficult to do things that were not so difficult before.  My muscle endurance is shot, and my legs weak.  Keep getting those tingles and arms and legs falling asleep.  I totally drained myself washing the bathroom today, not to mention gimped up my already gimped wrist.

Migraine wise I had a few days off... which was a pleasant surprise   Then hormonal migraines.  Which are always brutal, but this time seeming to not last too long.  Three days instead of six.  I think this fall weather is awesome.  It is not too hot, not too cold and that is what my body likes.  There there is a season where the migraines are not so over blown.  Unfortunately, it is a short season.

FMS flare up

FMS is totally flaring up.  Pain in my feet, ankles, hip joints, shoulders and wrists.  Constant pain but also effecting my mobility.  For example my wrists hurt like hell and I cannot put any pressure on them, grasp anything or even press my thumb to my fingers without causing a whole lot more pain.  I only have one wrist brace, which I have been switching from one to the other and that only helps so much.

The why of the flare up escapes me.  Could be the recent bowling, could be random or could be the Lyrica side effect.  One thing is for certain, it does not seem to be going away.  I am taking a whole lot of magnesium in hopes that it will help. I have pain killers for my migraines, which makes them the obvious choice when I have a migraine and FMS pain, but they just don't help that much.

Just gave myself a whopping of pain... intentionally.

I went bowling for a work thing and I wanted to go, so I did, even though last time it took a week before the pain began to dim and I walked normally again. Ah, yes, FMS and bowling do not mix. Still, I wanted to go. So I plastered on loads of muscle cream, stretched out, took extra magnesium and figgered with the Lyrica (which works better for FMS than migraines I might add) I would be looking at less pain than last time and for a lesser duration. Don't know if that theory will pan out or not, but I am feeling the sharp nerve aching burn already. Well, actually I felt it almost immediately in my wrist, then my shoulder, then my ankles and knees, while playing... but now it is worse and I am thinking my wrist is not going to be working so well tommorow and for the forseeable future. So took a hot shower, slathered on more muscle gunk and put on my wrist brace and hoping for the best.

How pathetic am I?

Wait. Don't answer that.

A person came into my workplace today. Someone I know very well. My pharmacist assistant. She greeted me by name, as she does when i come into the pharmacy. She asked about my migraines, since a storm was rolling in. Is this odd? Not at all. How could she not remember me when i go to the pharmacy once a week for refills. Sad. So very sad. On my part, not hers. I can't remember any of my customers names a few seconds after they are out of the office. I have to laugh, in a sad kind of way, when someone asks if a particular person is my customer because usually my answer is 'No. Well, the name sounds familiar. Hmm. Maybe.'

Speaking of which I have been living up to the brainless part of the brainless blogger. Can't seem to get a sentence out right these days. Or at least it starts off fine... 'Oh, I know what you mean, just the other day I, uh, spat out pickles fuzzle, huh?' or something much like that that made little sense to me or the customer. Sometimes I get my point across and sometimes not so much. Sometimes I just trail off and speak softer so that they might just think they did not hear me because I have a soft voice rather than my brain stuttering to a incomprehensible jibber jammer. Much like when my hearing goes, or is ringing so loud I cannot much hear anything else, I pretend to have a cold so people will not think I am an idiot for miss-hearing simple things.

What can you expect with daily migraines? There is no halting the stupid once those get going. The thing is it is not just the brain that gets tired, it is the whole me. Very tired. Very confused in the morning staring at my alarm clock trying to figure out what time it is only to find out I am running late and much have unconsciously hit the snooze button for an hour. That sort of tired. Obviously time to call the neuro and try and get a grip on this slippery slope. Thing is, it has been this bad before, and before that, and before that... the only thing that is keeping me moderately upright is the pain killers, without them I would be as I was two years ago and not doing much of anything. So thumbs up to pain killers. Maybe I ride on through this on them until I find a better preventative, rather than switching preventatives, have things get worse than worse and end up not being able to work at all.

Abuse resistent med FDA approved

The morphine-based drug was approved to treat moderate to severe pain when a continuous opioid painkiller is needed over an extended period. It will be available in either once- or twice-daily dosages.
Embeda contains extended-release morphine pellets wrapped around naltrexone hydrochloride, a drug that counteracts the effects of morphine, which is an opioid.
"If taken as directed, the morphine relieves pain while the sequestered naltrexone hydrochloride passes through the body with no intended clinical effect," King said in a release.
But if crushed or chewed, the naltrexone is released and absorbed with the morphine, King said, to some extent reversing morphine's effects.

Reuters article

I think this is great. Mostly because I hate having troubles getting pain killers with doctors, when I need them and am not abusing them. Myabe this new abuse free med can be given out more often than morphine without it and the docs will not be so freakin paranoid everyone is a drug addict.

Travel makes me...

Tired. Very, very tired. Of the 8 hour drive to our destination for a wedding, I drove 1, got a migraine and gave up on that idea. Of our 8 hour return, got a migraine and could not drive at all. I think the definition of love is when your man is willing to drive 8 hours without complaint so you do not have to. That is how useful I am in travel situations... just more luggage. Semicoherent, incomprehensible, squinty-eyed luggage. I brought a book to read, but did not read much... kinda zoned out most of the way really. Kinda zoned out the entire trip. Not at the top of my mental capacity that was for certain.

I managed to kill my killer migraine by Friday when we left, but that did not stop a sixer migraine for the trip there, a sixer migraine the entire next day and a eighter migraine on the return trip. Oddly enough taking your abortive and being on a road trip or attending a social event makes that abortive not really work... at all.

There are some times, even if you don't want to and the pain will make things quite difficult, you just gotta do things. You have to go places and see people. It is not a bad thing, just difficult. However, my father was very happy we came down to see him wed and meet his new bride's family. He was very happy to have all his children there. I got to meet my second yougest brother's girlfriend. I got to spend time with my two younger brothers, even if that time was just on a duller than dull ride. We may be an odd family, an overly dysfunctional family, but I do love them, even when I cannot see them as often. So that is worth a lot. In the end, I am glad I scraped together enough will power, determination and pain tolerance to go.

MMM: Monster Motion Migraine

Yep, the big MMM is the worst migraine ever. It is the worst because the pain intensifies with any movement; nod your head, move year head, accelerate in your car, brake in your car, walk.... all these explode the pain. If untreated the pain gets worse and worse every time you move until your are completely incapacited by pain.

The MMM started yesterday morning, migraine on waking means it is going to be a bad one and it was. I used a triptan right off the bat, whih lasted three hours. I used a T3 and that got me through the remainder of work. By the time I was driving home, pain was skyrocketing. Got home and tried to lie on the couch, but that made my head tilt in a painful way... ended up haveing to isolate myself in my room, curl up in a ball and pray for death. I took three Tramcet to get through the pain of the MMM, even that could not kill it. Woke up today and migraine still kicking and fought it all day. What do I get from this battle, a sore stomach and a pain diminished a little.

I am so ready for my road trip tommorow. If this migraine has not run its course by then I'll be in trouble.


Is awesome. This is the new med my doc gave me to manage pain and that is exactly what it does. T3's never do much for me, likely because to me Tylenol is like filler. This one also has acetaminophen, but instead of codeine it has tramadol and I guess that is just different enough for my brain for it to work. It is not too strong, does not give me a fuzzy head, and dulls the pain for about three hours... so just what I need to give me relief when at work. And the relief is such a freakin relief. So good to feel just a gap in the pain. You realize just how narrow your focus is when you are consumed by pain... it is all about getting through things. Just a bit of pain relief and my memory improves, my communication skills improve, my concentration improves and I can think ahead as well as think more than one thing at a time.

My aura right now

This is what you get with grainy vision, visual slow of a billion sparkles and then some big old white waves. It is amazing I can see at all.


I went to the ER finally. I suppose after two weeks of one solid brutal migraine in this insufferable heat it was inevitable and I should have gone last week. There is nothing about the ER experience that I like, thus why I avoid it. There is the long wait, there is the random doctors, there is the random treatment, the light, the fact that whatever they do might be completely ineffective or just as good as what I would do with what I have. So I avoid it and avoid it, and suffer and suffer until I feel like just chopping my head off and being done with it... then I go.

This time was not all that bad, ER experience wise. They put me on the IV, which is good and rarely done. They put me on Torodal, which unless it is in IV form tends not to work all that well. And then added in this anti-nausa thing in the mix which is said to be good for migraines in particular. Together the two drugs to it, where the Toradol by itself oddly was not. Either way, the migraine is still there but way diminished in capacity.

The RN was a pleasant fellow with a good sense of humor. He was amazed I made it two weeks before coming in. Called me stoic. I had to laugh at that... but not a ha ha laugh, more a ain't-that-sad laugh. Those two weeks were driving me mad... I had a moody pity party, a snarky fit for a bit, a lethargic I don't give a damn day, and then just some days where I could not even think past the pain. But stoic, yes. Chronic migraines, means running around doing things in the bright light with a migraine cause you have to, which is pretty damn stoic.

And this time the ER did a good job and so logically it makes sense that next time I have a status migraine brewing I should go when most people would... but I won't. I won't because I think I can handle it, I think this next abortive will do it, or more sleep or whatever and I am just too damn stoic. Ms. Super Pain Tolerance Chick. But I am not proud of it, the fact that I need to function in conditions most people would be down for the count just makes me a little sad. But that is the life, such as it is.

This heat is killer on the brain

I have this course I need to take in the city, an hour commute. I hate commuting and there is a very good reason for that. It means I need to get up early, when I sleep poorly as is, and am not exactly fucntion in the early mornings... due to meds and morning migraines. By the time I get where I am going, because of light and lack of sleep, I will likely have a migraine. In this case I did, so I battle that and half suceed. Then the ride home... I have no air conditioning, it is cooking hot outside, and twice that in the care. My migraine went from gettin-bad to horrific within minutes. My vision was doubled and hazy, my head throbbing intensely, my aura bright and distracting and the pain sooo intense. By the time I got home I wished I was dead and then had to try and battle that beast, and unfortunately only got it down to manageable rather than victory. So drug tally... two abortives and four T3s and little relief. And getting up even earlier tommorow to do the same damn thing. These two days are going to be very, very painful. Since I am already in status migraine mode, this may be the straw that breaks me and I end up forced to go to the ER. I swear next time I am just going to refuse and take one either by distance learning or the training centre we have here at work... some people do not travel as well as others.

Had my MRI

Which should have been done eons ago, and really does not do much except check to make sure they are not missing something. It does nothing to help me right now, in chronic pain hell. However, it did prove I still have a brain... which is good... I was beginning to wonder. Having an MRI is a lot like lying in a coffin, but the cemetary is doing massive and loud constrution. I went in with a migraine, so it is not like the noise made it worse. I did find it a little hard to lie still, because for some reason today is a whopping bad FMS pain day and I felt like I had been beaten with a stick from my middle back down to my toes... so I kept wanting to twitch and had to flex between scans. But at least it was not a twitchy bobble head migraine day... i would have been there for hours.

I was slightly tempted to go to the ER while I was there and have this eight day migraine from hell taken care of while I was there... but this hospital is larger and ergo packed waiting room and four hours later I would get even less sleep than I did last night. Plus, there was a woman there vomiting profusely, which told me a) if she was not at the top of the que then I would be way way down at the bottom and b) I would probally get some rare and horrible disease from the waiting room alone, like the swine flu or some such thing because that is how lucky I am. But I really should slip into the ER here sometine soon, cause this migraine is not buding an inch. And as such my brain is going to moosh. I was late for work today, because I woke up late but I have no idea how that happened, since the alarm went off... apparently I hit snooze for an hour and a half that I do not remember... and that is always a bad sign. Too bad an MRI does not pick up pain, then at least they would know what they were dealing with.

powerful migraines, pending MRI and poor moods

Obviously, again, I am stubborn and should go to the ER. If I thought they could help maybe I would. At this point, this beast of a migraine cannot be helped. I switch abortives, but then it would be a day of no abortives to do so, and that does not seem to be happening. I need an abortive either straight in the morning, or a few hours later, and it does not last... so then I either need another or use T3s, and the T3s do not pack a powerful punch. I have already been going on five or more days straight with the abortive, which is a no-no, as the ache in my chest demonstrates, but to get to work that it what needs to be done. T3s are not much of a rescue med when you have to use them and your abortive to get through the day.

Anyway, been hellish. I have my MRI on Monday. But really an MRI is just to exclude other things and will not help in any way with my current chronic migraine state. It will prove that I still have a brain, which I am beginning to doubt, but that is about it. My doc just ordered it because of the increase in other symptoms... like that crazy weeks of nausea, muscle twitches and jerks and numbness. It should have been done long ago, so time to get it done anyway. He also sent me for back massages, which I still have yet to go for, not because I don't need them, because damn do I ever, but because with a whopping migraine after work I really do not want to do anything but get home and curl up and wish for oblivion. But I have to get going with that, my neck is crimping something fierce on some of these vicious migraine days. But really when it comes down to it, as these more chronically chronic migraines do not seem to be settling down, I will be seeing if I can get to see the nuero again. I like my nuero, I just get wary with changing meds, as in the past it usually resulted in a three month horrific adjustment period that ends up with me taking leave from work, which is precisely what I am trying to avoid.

But, on the plus side, my mood improved. Not exactly back to my goofy self yet, because the pain is leaving its mark on me, haunting me, but at least it was better than the funk I had on since Friday. So that is something. I would hate to be stuck with a mood like that for too long... that is the sort of mood that makes chronic migraine sufferers jump off cliffs and such. Hard not to get in a mood like that once in a while, sometimes hard to shake it, but really who does not throw a good pity party for themselves once in a while when they are being driven mad with pain?

Killer migraines getting the best of me this month

I just can't get rid of this killer migraine I have. It is making my neck hurt and kink up so that it hurts like hell to bend it forward. I can't sleep because the angle on the pillow seems to make my head hurt more, and the ringing in my ears is louder than the background music I have and the throbbing makes me feel like my fricken head has a pulse. It is of course hormonal migraines and of course it is a battle every damn month, but most times I have a handle on it... in the whole balancing different meds and suffering through what slips through the gaps. This month though i am scrambling to keep up and totally failing. The pain is damn near killing me and there is a point when it is intolerable and in the middle of the night that I wish it would already. I am also frightfully moody as a result. I just can't shake this bad mood that hit me on Friday and is having a lingering effect on me that is both unpleasant and irritating. I am in too much damn pain to think about anything other than my piss poor mood. I did not go into work today, which makes me feel ten different ways of horrible and incompetant, but when the pain is that bad there is no choice. A half day would have worked if I could have just tempered the pain a bit, but no such luck. When i finally managed to get some sleep I thought I could sleep the migraine away, but that did not work. however, it did lessen the pain and I did, at last, get some sleep. Tonight, I am going to take two sleeping pills and try to get some solid sleep and maybe that will kick this... if not, then I am going to be in a right foul mood for work tommorow and have to resort to going to the ER after, the ER being of course my last resort, that bit of desperation of the hopes that someone can just get rid of the pain for me, but the reason it is a last resort is because in-itself it is a long painful venture that only has maybe a 20% success rate and going through that entire process without a result can be hell on the morale.

What are vestibular migraines?

I always asumed virtigo, dizziness and all that wierd motion stuff was just part of the neurological fun of a migraine. I guess there is a migraine class for people with a whole lot of this part of the migraine.

Vestibular migraine is a variant of migraine in which instead of headache being the most predominant feature, dizziness is. Patients usually say that out of nowhere they got extremely dizzy and don't feel like they're on even ground. Some describe a spinning or rocking sensation. They have light or sound sensitivity and get nauseous or throw up. Episodes can last minutes to hours, and there's a chronic form where people have a constant sense of imbalance. In many instances, people have a history of migraine headaches before vestibular migraine shows up.-

Study links "aura" migraines in women to brain lesions

Lovely. When I get my MRI next month I bet the doctors will be astonished to find a black hole where my brain used to be... but maybe not, maybe just lesions, which sounds worse than it is, I think.

Scientists said there is no evidence the so-called "silent" lesions, which can be as small as a pinpoint and are common in many older people, affect mental or motor function as adults age. Still, the study of more than 4,600 men and women in Iceland is the largest prospective research to show that migraines occurring in midlife may affect the brain years later, said Lenore Launer, chief of the neuroepidemiology section of the Laboratory of Epidemiology, Demography and Biometry at the National Institute on Aging in Bethesda, Md.

"The importance of this study is it suggests that migraines are not just an episodic condition," Launer said. "It may lead to long-term changes in the brain. At this point there's no real clinical message for people with migraines."

'Maye lead to long-term changes in the brain', well I can tell you that is true, when you begin to think differently, remember differenty and acti differently. My brain just ain't what it used to be.

I think I emotionally flatlined

Somewhere along the way I seem to have lost my sympathy for other people's pain. Not my empathy, that I got loads of. More so I cannot seem to tolerate complaining or whining about any sort of mild to moderate pain in others. I should not compare other people's pain to my own, because it is not a contest or a game or even a measurable scale in which to read one person's suffering over anothers. Yet I cannot seem to stop myself from doing it. I hear someone with some minor complaint, even a long enduring minor complaint, and I listen and nod and make some general sympathetic remark. Most of which is false, because while I empathize and often feel the same or worse, I do not think it is productive to announce it. That in fact on my best day I am not doing so hot, but I still do all the things I need to do and none of the things I want to do. I think of what I need to endure because that is the way it is, and all the meds I need to just function at that minimal capacity, all on those rare good days... and I just cannot muster any real sympathy. So while I can relate, I can empathize, I just don't see the need to discus it or sympathize when I am in the same boat or wishing I were. I do empathize when someone is working with a migraine, because without the right meds, their pain and cognitive impairments are a great deal higher than a 4... no matter the frequency. But I would have little sympathy, for example, if someone was constantly voicing complaints about chronic headaches... I can empathize, since chronic anything sucks, but the pain level is mild and the chronic nature ensures that person would have a baseline functioning level, which would mean it would be like someone complaining about normality. Hmm, today I feel the same level of crappiness I felt yesterday.

While I do not want to contribute to the isolation I know comes with chronic complaints and health problems, nor do I feel the need to express sympathy for it. Because that sort of conversation would mean openly expressing my own pain in order to relate to theirs and I do my damndest to mask my everyday state with a fine facade. I do not use my illness as an excuse for anything work related, because that would be admitting it affects me. I seem to expect the same from others. I expect others with chronic illness would also want to minimize its effects and try and maintain a facade on good days and laugh away the pain. I may hate it when people do not understand why I have so many doctors appointments and too many sick days... I know they cannot comprehend, so don't bother trying, I just do my best which sadly is not going to please everyone... frankly every day I manage to get out of bed is a roaring success to me. But when I am work, no matter how rotten, I do my job. I may be chronically ill, but rest assured no one hears about me being chronically ill. (with the exception of anyone reading this blog, which by you definitely get a load full of it)

I get the need for some people to express their discomfort, pain or ill feeling in order to have people know or hear them because otherwise they would think they are 'fine'. I do understand that. Sometimes I think people think I am 'fine' when I get to work and get my job done, without understanding the lengths I go to to do so, and all the drugs it takes to do so, and how no matter how many meds the pain is there. No one gives you a reward for making in to work, only notices when you don't. So I get the need to express the feeling that, yes, I am at work, but by the way i feel like crap. I just long ago learned that no one really cares to hear how crappy you feel on a daily basis. Obviously people sympathize when you cannot keep the facade up and look like you feel like crap, just as I sympathize when someone else is in that state. Obviously though when it is a chronic ailment, even I do not want to hear about it all the time. I don't even want to hear myself complain all the time. I think it is because I am just in that hazy state of numbness knowing i am barely managing to achieve that functioning state on a daily basis. I could worry that I will not be able to, I could be trying hard to prevent that, but been there done that and am just drained of all desire to make the attempt. Just kind of holding on and hoping I will hit that spot of balance between pain and medication. If my own precarious state does not faze me, then is it really surprising I cannot muster up some honest sympathy for others? I should, because I know very well that when you are chronically ill that balance is rarely achieved and never maintained... you are always struggling to keep up and absolutely nothing will cure you... sometimes you win the battle, sometimes you don't. Hell, we should all shout out at the top of our lungs when we make it into work. 'Victory is mine! Today I won the battle!'

Certainly it seems like everyone notices when you lose the battle, but do not grasp that it is war and there are so very, very many battles. Yeah, I get the desire to express that. I just don't actually express it. I have that long held fear of being labelled a chronic complainer, so I tend to minimize complaints, which has done nothing good for me, but also makes me tend to do the same with others... I acknowledge their battle, but try not to show too much attention to it, as though they too don't want to make a big deal about it but cannot avoid mentioning it from time to time. It is called emotional distancing, emotional avoidance, emotional numbness. So, no, it is not a contest. We are each in our own war, dealing with our daily battle whether we voice it or not, whether we complain or not, whether our facade holds or not.

Maybe I cannot understand the need to voice it, but I get the battle. Right now I am on the losing end of that battle, so I am wearing a little thin on sympathy, and any emotions really. You know when you get to that state where it is just you and the pain, and what you need to do in order to get up in the morning and get through the day so you can get back home as soon as possible. Everything becomes surreal and it is just you and the battle. If you pause to reflect for a moment you could just burst into tears, so better not to think, just get it done, work through the pain and earn yourself some rest to get through it the next day, counting the days till the weekend...

I had a Bad Day

I woke up feeling absolutely drained. Then our kitten got sick all over the place and me. So I called in work cause I wanted to make sure he was not sick sick, since had has been sick and he is just a wee kitten, but the boss did not think that was a reasonable excuse. So after I changed I went in all cranky and tired. Then the day was just one fricken thing after another. I set a vet apt for Charlie for the end of the day, the last appointment they had to get him checked out. To make sure he is not too sick, to make sure my other cats do not get it. But boss was not pleased I had not asked her about this. So I resechdualed it for the closest one that had to the very end of the day, which will be next monday... which is pushing it since he is a kitten and needs his shots. I had a killer migraine all day and was just out of sorts, the whole day sucked the big one, and because of the migraine these generally small things compounded until I was just plain cranky. Finally, I stay late to cover for the fact I came in early, finally get out of there to get to the pharmacy to get yet more meds, forgot my wallet for the one med I pay 3 bucks on for some reason and got crankier. Afterall that I come home cranky, tired with a whopping migraine that just won't freakin quit and my chest aches for some reason... and I think maybe I will have a heart attack and save myself the trouble of having to get up and do it all over again. But tomorrow I have that ultra sound thing from my stomach, in regards to the whole nausea thing I have going on. My boss was not pleased about that, so there goes my lunch hour, but I was going to use that anyway. I don't even feel like going to the thing, since it is out of town, so I have to drive there, do it, drive back, make sure I ready to go back to work and then drive to work all for a test that is not likely going to help any. My MRI is schedualled on july 20th.

Sometimes working with migraines blows. It is giving me Moods this time and I hate that.

Exercise is totally over rated

I have been attempting some mild exercise, under the theory that just a little will prevent my muscles from wilting and my ultra hypermobile knees from collapsing. It is really hard to get motivated when you have chronic migraines... a migraine is not the time to be thinking about any sort of movement. I read that aerobic exercise would not cause a migraine, so that does leave a small window of opportunity. I am not so sure about that theory, since I did a workout (by workout I mean danced several songs on my Wii... which totally counts) and not too long after his with one fricken whopping migraine.

Plus with FMS any sort of exercise causes a great deal more pain. Every time I do just a little of exercise on either upper body or lower, well then that whole muscle group hurts like hell for two to three days. Which means hard to have any consistent routine on a daily basis for sure, cause that pain compounds. Then I think if I keep doing it and just push through that pain, then maybe I will get to the point where at least I have some endurance and muscle stability (to hold those hyermobile joints in place)... and maybe that will be the case. What I do know is it will not help with the pain, cause FMS pain is all about the brain sending a constant pain signal out, so any pain is felt faster, stronger and longer... no matter how fit you are. So while there will be benefits, there will also be increased pain that will not recede with time.

But it has to be done, one way or the other. A couple weeks back I went out dancing and danced my butt off and had a blast (a rare thing for a hermit to do). It was awesome, and the booze helped with the immediate pain. The next day, well, I expected some discomfort, which there was, but I could also not put any pressure on one leg because my knee was shot (and that is not FMS related). So I figure that I better do something to get some basic muscle fitness going on before I have nothing to hold my bones up. Sounds like a sound choice to make. But dang that FMS pain can get nasty. Your feet hurt so bad you have to hobble, your arms hurt so bad you can straighten them if your life depended on it and the rest of you feels like you have been beaten with a stick. Plus, FMS makes you have no endurance, your muscles start to tremble and shake pretty quickly and that can last days. Hard to say whether I can keep it up. If the pain diminished in some consistent way then there would be hope, but not so much. And this is all from what most people would call some serious mild exercise. And this is also being on Lyrica, which actually helps with FMS pain, in the sense the immediate pain is not nearly as intense or felt as quickly.

I think I will have to convince myself that pain is good... that pain means I am trying and doing something that may make me, if not feel better, last longer. It helps that I am doing a game (that has objectives and goals and cool music, all of which encourage me to continue despite the discomfort). If it was straight up exercise, well, you might as well call it what it is... torture.

And then comes along the migraine... and I think jeez, this whole punishment punishment thing is totally not working for me. I would seriously like some sort of reward for doing something good. It is basic behaviorism here... you do something that totally sucks but in the end you get some sort of reward for your efforts... and if my only reward is that if I can manage to make any significant change by doing mild exercise that I might not have to have knee replacement when I am fifty, well, that totally does not cut it. Doesn't that totally suck? Anyway, I am going to keep at it, at the same slow pace and see if I can get some sort of baseline to build on.

What a life...

When you have chronic conditions nothing is ever simple. I went to the doctor because this nausea thing is getting out of control and way too long lasting to be any kind of flu. So first, blood work, although my other blood work was fine, so he does not think an inflection. Next, ultrasound, cause stomach does not hurt, nausea with no obvious patterns. Then he added an MRI of my head, cause it has been awhile since that has been 'looked at'. It has been about four years since I got my CAT scan. And maybe the nausea could be brain or migraine related. But still, one symptom of nausea, bad certainly, but just one thing and walk out with blood work, ultrasound and an MRI... who else can say that? Crazy. Yet a sign of a good doctor and one who is thourough. But unfortunately it does little for me and my totally unsettled stomach... so it is anti-nausea meds for me until this either goes away as abruptly as it came or.. something.

I guess it kill a killer migraine you gotta go all at it

After treating my killer migraine as agressively as I can based on what I have, it did not kill the migraine, but made it a bit better for part of the day. What it did do, is made it so I could sleep and get up without another morning migraine. So successful. But I had another whopper today, early afternoon. So I again took the abortive right away and it just did not work well, took a T3 and that did not quite cut it, but I should not take more than that. You just can't treat all of them agressively, becuase then you end up with not being able to take any more abortives that week and having only painkillers as a fall back. So I am just suffering right now and hoping for a good sleep. But tommorow is Friday, so that is good, and a long weekend which is awesome.

Reasons to take Magnesium

My mom read an article on MVP and she thought it sounded just like me, and that I should take magnesium. I told her it had crossed my mind back in the day as well, and maybe I do. But even so, there are two other reasons to take magnesium: migraines and FMS. So I bought some and am starting slow and working my way up. I am hoping it will help with the muscles spasms at the least.

Reason One:

It looks like magnesium supplements may work as a migraine preventative and magnesium deficiency can cause migraines. Worth a shot.

Should You Be Taking Magnesium?
Two doubleblind studies have shown that magnesium supplementation may reduce the frequency of migraine. In research studies, we have found that magnesium levels affect serotonin receptors, and also have an effect on nitric oxide synthesis and release, as well as on NMDA receptors—all brain structures and chemicals suspected to be important in migraine. In small studies, both migraine and cluster headache patients have responded acutely to intravenous magnesium. In a larger double-blind controlled study, the treatment group, receiving 600mg of magnesium for a 12 week period, experienced a 41.6% reduction in headaches as compared to only 15.8% reduction in migraine headaches in the placebo group.-- The Daily Headache

Magnesium Deficiency & Migraines

Which leads to Reason Number 2- When you have a Fibromyalgia migraine combo platter you find a bit of an additional pattern. Often people with FMS are deficient in magnesium, simply because of the sleep disorders, less growth hormone, and there fore less magnesium.

Magnesium deficiency is therefore one of many problems in people with fibromyalgia which is due to or influenced by the sleep disturbance. So while it's possible to attain some benefit from taking magnesium, treating any sleep disorder is just as helpful, if not more so.

Magnesium is extremely important to many functions in the body, which is why a deficiency can cause many different symptoms. It is most widely known for being needed for proper bone formation. With a deficiency, bones will be soft, and it can play a role in osteoporosis However, magnesium is also the activating mineral for at least 350 different enzymes in the body, more than any other mineral, so it is crucial for many of the metabolic functions in the body. Magnesium is necessary for almost all the enzymes that allow the glycolytic and Krebs cycles to turn the sugar and fat we eat into ATP. Low levels of ATP have commonly been found in people with fibromyalgia, and it is believed that this plays an important role in many of the fibromyalgia symptoms. Thus, a magnesium deficiency would definitely be a factor in worsening those symptoms.

Magnesium is extremely necessary for proper ATP synthesis, because ATP is stored in the body as a combination of magnesium and ATP, which is known as MgATP. ATP requires magnesium in order to be stable. Without magnesium, ATP would easily break down into other components, ADP and inorganic phosphate.

The brain heavily relies ATP for many functions. In fact, 20% of total body ATP is located in the brain. Thus, low levels of ATP can diminish brain cognitive functions, a common problem in people with fibromyalgia.

Adequate magnesium is necessary for proper muscle functioning. Magnesium deficiency promotes excessive muscle tension, leading to muscle spasms, tics, restlessness, and twitches. This is due to an imbalance of the ratio of calcium to magnesium, as calcium controls contraction, while magnesium controls relaxation. Plus, in fibromyalgia, changes are seen in the muscles, such as "significantly lower than normal phosphocreatine and ATP levels" and "values for phosphorylation potential ... also were significantly reduced":Role of magnesium in FMS


what an ass

The fate of patients with persistent widespread pain labeled as FM stands in reproach to whatever theory underpins this sophistical treatment act. In the community, the majority of people with persistent widespread pain improve with time12. That is not the fate of those who become patients and are labeled FM. Based on the science that pertains to the regional musculoskeletal disorders, I would suggest that this unhappy fate is not solely a reflection of the intensity of their symptoms or the pervasiveness of the psychosocial factors that confounded their coping so that they chose to be patients in the first place. I would suggest that the treatment acts, dripping with empty promises of elucidation and unproved promises of palliation, are iatrogenic. I would further suggest that these circular treatment acts will exacerbate whatever mood or thought disorder is complicating the plight of these patients13.

NORTIN M. HADLER says "I suspect that few suffering with persistent chronic pain are suffering in silence."... Well, I am buddy. Other than my blog rants, I don't talk about FMS with anyone, because I do not see the point and I do see the negative. I do not seek treatment for it because I do not see the point and I have given up trying. Mostly because of doctors like him. Go figger. Yeah, when your in a bucket load of pain you do want to find someone to help you, to end it, to prevent you from screaming... but in the real world, going to the doctor about chronic pain that is not going to kill you or cripple you, then you might get 'labeled' so it is sometimes seems better if you minimilize it, or suffer in silence, which many of us do. It is like going to the ER with a persistent migraine... expect inferior information and treatment.

There is no more valid a diagnostic label for patients complaining of persistent widespread pain than "overwhelming persistent widespread pain." FM and its sister labels2,14 means no more than that. "Functional somatic syndromes"15 and "medically unexplained symptoms"16 denote the same subset of the woebegone. The former is difficult to define, even by its proponents, and the latter implies that one would be better off if symptoms are medically explicable.

While it is true when you are diagnosed the wide spread pain thing is the focus, along with intense sleeping issues and memory issues. But just because that is the criteria for diagnosis, once other things have been eliminated and if you have other symptoms, does not mean there is not something specific going on. Studies have shown the brain of someone with FMS does some funky things, that the patient feels pain at a higher intensity and for a longer duration, that the body is hyper sensitive to it and other stimulus. I don't care what you call FMS, but it is there. We all are not chronic complainers whining about our pain, and so making it persist simply by will power. And there are treatments that work. Lyrica, for an example. I would not say it works 100%, but I know from my trip to Scotland trekking up hills and walking the royal mile, that it is a drug that makes a big difference. A significant and noticeable difference... as in the pain normally felt right away takes more to be activated, and the pain felt after is significantly diminished. It works better at dampening that overactive pain response in FMS than it does as a migraine preventative, which is why I am technically on it... so much that I would not want to be taken off it and switched to a different migraine preventative because of the positive effects on the FMS. But hey, what do I know... maybe I have some other obscure chronic pain condition that coincidentally was improved by a anti-seizure med.

I am a little sick of all this debate on whether FMS is real or not. It severely affects the mind set of a patient to doubt themselves so, causes more frustration and depression, and less communication. It limits awareness and the quest for effective treatments. And it totally ticks me off. Back in the day, shortly after my diagnosis, I ended up with the chest pain from repetitive movements at work. I went to the ER with it when it got to be severe, because I was young and did not yet know the difference between lung pain, heart pain and chest wall pain. I told the doc I had FMS and thought maybe it was something like that, because rationally, if it was a heart attack it would have killed me weeks prior when it started. He said he did not believe in FMS. To which I replied, 'How about I list the different diagnosis I have had prior to FMS and you take all of those into consideration instead'... but not in so many words. But the point is, I don't care what you call it, as long as you treat it. And that idiot ER doctor did nothing, when it turns out it was something, and something common (comorbid) in people with FMS and a chest x-ray would have done the trick.

If I do not have FMS, I sure as hell would like to know what I do have, because while FMS is a bitch it will not kill me, whereas if you take all the symptoms and look at the other conditions it can be and add in my abnormal blood work, there are some other conditions that could kill me... and that is rather something I would like to know. And if it is all in my head then I need a serious bitch slap to knock me out of whatever crazy ass thing causing me to want chronic pain, chronic insomnia, IBS, fibro fog... Seriously, how crazy would you have to be to will that sort of hell on yourself? That is some self deluded crazy imagination. And a lot of brain power to trick yourself like that. I mean, I get that depression causes muscle pain (because moods affect our neuro chemistry), but if your not depressed or getting off on the negative attention of being ill (which I actually think you could do without actually manifesting an illness), then why and how could you use your sizable mental abilities to trick yourself into feeling like crap on a daily basis, then learning to cope with feeling like crap on a daily basis and then developing a facade so people don't know you feel like crap. If I have that much control over how I feel physically... then I am totally going to wish away my pain, my migraines, wish myself to sleep every night, wish myself to lose twenty pounds and wish to win the lottery, because if it works one way it should work the other way. And obviously if FMS is not real and I am causing myself to feel this way, then clearly my mind body connection is supper strong, like super hero strong, and thus I can, by pure willing, affect my body in amazing ways. So the next time I have a migraine I ought to be able to tell myself that I am not in pain or maybe that I like pain or that what I think is pain is actually just a mild tingly sensation. And when I get a migraine aura, instead of thinking 'ooh, I'm getting a migraine' I will think 'Ooh, I see dead people' or 'Ooh, I see air particles' or 'Ooh, I have the psychic ability to see auras but it hurts my mind'.

Whatever. Pain can be doubted because pain is not a shared experience. Lots of things are subjective. Like because I cannot see this doctors brain, I can really doubt it exists. Any idiot can play devil's advocate. You say you are in pain and I say prove it. You say people with FMS once they get that label make themselves more ill, and I say getting a diagnosis at all is a profound relief. You say god exists and I say he is a societal construct based on cultural ideals. You say the world is composed of tiny atoms and I say show me one?You say the world is real and I say it is all the perceptions of the observer. Doubt everything. The only thing that cannot be doubted is the 'I'. I think therefore I am. And you know what? I am in pain, is pretty hard to doubt as well. By doing so you just shove all the need to prove onto the other person. I say prove FMS does not exist. Prove that pain we feel is not explainable or demonstrable. Maybe by expending a little effort to prove it does not exist, you will find the truth behind the condition, rather than pushing all that responsibility onto your poor patients to prove to you they are actually suffering.

Should rheumatologists treat fibromyalgia patients?

I do believe there are patients who have widespread musculoskeletal pain attributed to a syndrome we call fibromyalgia. However, I do not believe rheumatologists should be the "main caregivers for these patients," as Pisetsky and others have suggested. We simply treat these patients by default. The main reason for my stance is the lack of any creditable evidence supporting fibromyalgia as a rheumatologic condition other than the existence of chronic pain. Although rheumatic diseases are often associated with chronic pain, the converse is not necessarily true. With the burgeoning entrepreneurial specialty masquerading as "pain management," my opinion is that these patients would be best served by those who claim to be pain specialists—if only we could get them to put their needles down long enough to actually treat the pain and the patient.

Dr Pisetsky states FMS is not a rheumatic diseases and therefore not under the realm of what a rheumatologist should be treating. I actually do not disagree. I agree that a rheumatologist is the specialist to be seen to get a FMS diagnosis, but I doubt they are great in the treatment department. The first one I saw, because I presented symptoms of lupus or RA, told me I had 'hypermobility sundrome with chronic soft tissue pain' and that was that. The second one I went to said I had FMS but that I was too young for any medications and that was that. Thanks. So very helpful. While the symdrome shares some symptoms with diseases these specialists do treat I find they flounder with FMS, reluctant to treat pain as pain and wishy washy about what to do. Which leaves the FMS patient pretty much in limbo. There general doctor will often not be able to fill the gap, they may try a few things, but pain management is beyond them. It is the reason I have never had any effective treatment of this syndrome and it has kinda fell to the side in the face of chronic migraines. I think a pain management clinic is the way to go, pretty much the only way to go. So the dude is right, if I had FMS and I was his patient I would totally ditch him.

On the other hand the reply to this article suggests otherwise:

Who else can manage fibromyalgia better than a dedicated and caring rheumatologist? We are the best diagnosticians, bar none. We are better at using drugs than anybody else, even with our hands tied behind our backs. Managing a fibromyalgia patient is like having one's hands tied behind one's back. Furthermore, drugs don't work very well in these patients, and just telling a patient that they must exercise also does not work. As I write this, I realize that in some respects managing a fibromyalgia patient now is somewhat akin to what is was like managing a rheumatoid 35 years ago when I started practice. Maybe that is why I am not resentful in having to take care of these patients.

It has occurred to me that if I were not able to use opioids in the management of fibromyalgia, then I, too, would lose interest in taking care of these patients. Opioids are to fibromyalgia what corticosteroids are to rheumatoid arthritis. We try to avoid them if possible, but when they are necessary—which is often—we should employ them. Maybe, just maybe, Dr Luetkemeyer refuses to give these patients opioids for whatever reason. If that is the case, I could understand his frustration and his decision not to treat these patients.
-- Dr Murray Sokoloff

Now that doc sounds like he would go the course with his patients, FMS or otherwise. I want him at my back any day. He suggests some may not want to treat FMS because it is difficult to treat, and I think that is the very reason... so recipe to follow and no sure results. He points out that RA back in the day had no easy treatments either. So all specialists are not born equal it seems. Pity in small areas we simply cannot pick and choose.

Results from sleep study...

Were rather disapointing. Actually they were good. I was in range for my pauses of breathing, in range for the amount of kicking and movement, and had plenty of oxygen through the night. All very good things, but nothing that helps me with answers or get a better sleep. I have decided from all the muscle jerks at night, I should start taking magnesium to help with it. But I don't know about the rest, the whole waking up not breathing bit... maybe one of the pillows designed to help you breath better when you sleeping. Since I obviously am breathing well most of the time, it must be something not often, so I don't have to worry about it. So I am left with just my usual sleeping disorders really, which are quite enough.

Of all the things I miss, I miss my mind the most

This whole spring migraine season is toally messing me up. In my moments of clarity I realize I am having a great deal of trouble remembering things. A whole lot of things. Whether I took my pills in the morning. Whether I paid the bills this month. The whole month of March is a haze of remembering and forgetting. Obviously when I am having a migraine this is more pronounced. I forget names, how to do simple tasks, important facts of a conversation while having a conversation. Constant migraines pretty much mean the inability to process long term memories, which leads to a whole lot of forgetting on my part. So on the rare occasions when I do not have a migraine I try to think back and I totally come up blank on a great deal. Then you start getting that wierd surreal feeling and feel just out of sorts. I can't say I like it. There are just portions of your life that are just stumbled throung blindly and forgotten. It is no wonder time seems to go by so fast, when you finally are able to pay attention a great deal of time has passed without being remarked upon. And so you get this disjointed perception of the passage of time. I can't even tell how long ago events I do rememver occured, they are too indistict to mark with any clarity.

Arn't we the trippy bunch...

New Migraine awareness blog

Migraine Journey is a new blog
"Last year I compiled, edited and published the book, Migraine Expressions: A Creative Journey through Life with Migraine to try and help dispel the myths of migraine via the words and art of people who live with it." -Betsy Baxter Blondin, Editor

I was one of the contributors to that collection and am happy to see she has created a blog.

It's all in the details...

Managing FMS and chronic migraines is all about balance. Too much of anything is never a good thing. Any change to routine can spell catastrophe. So many details and nuances that it is impossible to always succeed in avoiding triggers, but at least you can do damage control and strive for some sort of balance. But that does not imply stability, because any treatment can fail suddenly and things like life happen. Sometimes I wish I could grasp the patterns behind migraines, because sometimes when you are having a real bad month these migraine free, headache free, no pre-migraine or migraine crash, days comes out of nowhere and it would sure be cool if I knew why. The fact that spring is not kind to me has to do with both FMS and migraines; the light changes hurt both, but also FMS with its whole syndrome symptoms has unexplainable allergies amongst other things, and of course there is the simple amped up pain factor with weather changes in both conditions.

So I am a little concerned that my place of work has changed its hours, so that we are open later on thursdays and fridays and thus in a rotating shift we will be working late those days. It seems so very insignificant, but not to be underestimated. Seeing as I do not sleep, if I can get up later, I will. Which means I will be disrupting my delicate sleep cycle and not have a stable sleep routine. And this is based on my experiences with even mild shift work. In the past, so not a good thing. It is kinda scary really. My migraines have been overtly frequent lately, which is difficult enough without messing around with things. Yet, it is not as though I can say no. While I work for a 'tolerant' employer when I'm not missing work, I have taken two short term leaves in the last four years, and when I did not bounce back into full functioning after my last one it did make my work situation extremely uncomfortable, such that not only do I not want to need such leave again, but I am reluctant to even use my sick days, or suggest I am not in complete control. So using my health as an excuse to not take my turn on the late shift would rub everyone the wrong way. And it is not as though sleeping in does not sound wonderful, cause it does, so at the very least I might get some catch up days on sleep. Mostly I am worried about the migraines, since my poor sleep patterns cause migraines to go out of whack... the whole midnight migraine or morning migraine thing becoming common. This all begin at the end of the month and either I will notice an immediate negative response or it will be one of those slow declines or I will get lucky and this one time a change in routine will not kick me in the butt.

Too many triptans

Month long migraines and too many triptans. I use Axert, but try not to use it too much, because it causes shortness of breath, which aggravates my asthma and then I get asthma attacks. So it can't be my regular triptan, even though it works better. Instead I use an ergotomine for my regular triptan, because so far it is the only one that does not cause me to have trouble breathing. So I have been using both, to try and trick my brain out of this migraine stretch. Use Axert for three days, off one (cause you need to wait 24hours) and just use painkillers, and then go on the ergotomine for three days, then repeat. Which means I am well over three days a week of triptans, which you should not do. But you should also not use painkillers like T3s for more than three days. Point being, using too much of everything just to battle these things.

And when you take too many, in my case, you get tired, short of breath and chest pains and heart flutters. Then vertigo and dizzy spells. Loads of fun. Which means somehow I have to manage three or four days without triptans. I am not sure how, but somehow. Sucks to be me right now. So I think it is time to see my doctor. And maybe he has gotten those sleep study test results and just maybe the little bit of time I managed to sleep will help with that. I am so sleep deprived I am forgetting to take my meds, or forgetting if I had already.

I have a love hate relationship with spring

Honestly, out of the whole month there were maybe two days without a pre-migraine, migraine or post-migraine. Two days without a headache or migraine related symptoms. Two days of awesome clarity, clear and sharp thinking, where I got things done. On those days the world seems so intenely sharp and vivid. And you are so very aware it is not a good thing that this is a rare occurance rather than the norm. It is hard for me to keep a balance since chronic migraines three days out of the week can easily lead into much more. One bad week of say five migraines, takes its toll and might then lead to anothing bad week or into a status migraine.

The rest has been migraine hell really. The weather unpredicatable, combined with lack of sleep, more light and, of course, the predictable hormonal migraine. It is becoming quite the drain. When you get a status migraine, a migraine that lasts continually for three days, it is killer on the body over all. Hard to break and takes some time to recover from. Unfortunately, these migraines are very hard to break. As a result you try damn near everything once, then again and then in different combinations in order to do so, because the pain is maddening. A person simply needs to have some migraine free days to recover and to dampen the triggers, otherwise it is just one migraine leading into another.

Anyway, the pain is driving me to distraction. I tried taking some holiday days from work to break the pain pattern, but it did not work. I got some sleep and did not need to expose myself to daylight, but the migraine stuck with me. It has been an extremely long month. In which, I have used too many triptans in order to combat these enduring migraines, such that they do not seem to be doing the trick now. So at this point I am pretty screwed, as there is nothing else I am capable of doing to get rid of the pain, asside from a trip to the ER (where the chances of success only increase by maybe 10%). Sometimes when I get fustrated enough, or desperate enough, I go to the ER because I like to think they can help, are there to help, but that is not always the case... actually, it is rarely the case. They pretty much do the same thing as you can do at home, somehow under the impression you have not already tried everything. Which is how I get into these situations with drawn out status migraines because while I know it is not good and I know it is recommended to seek medical attention, I also know the ER staff know less about these than I do and all I will get for my effort is more fustration and a lingering sense of disapointment. That being said, about the only thing to do when migraine frequency increases exponentially is set up an appointment with my neuro and hope the situation does not get out of control.

Still, I do love spring. It is brutal and bright, but when I feel the sun shine, the wind losing its bite and the snow melting it makes me feel like I have more energy. Makes me damn happy to see the snow retreating.

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...