That socializing thing and the Migraine Zone

I'm just going to call the week-ish of hormonal migraine hell the Migraine Zone... for me the Migraine Zone is:

  • a Zone... as in it has its own damn time zone and area code. It does not play by the rules of 'regular' migraines, if I can even say that when I get daily migraines. The reason I can say that I suppose is because the zone has a beginning and an end, but is days of one migraine... not a migraine a day. Totally different story.
  • Ditzy, dizzy, dumbass... a haze comes down on me and my brain shuts down. I fumble and mumble and stumble. Words fail me. My perceptions begin to get all Alice in Wonderland. Why is that wall moving? Did the floor just fall or the world tilt?
  • And the pain, well the pain peaks and just stays there. It doesn't really matter much what I do about it. Sometimes whatever poison I choose will dim it a wee bit but never long.
  • Sleep? Who needs sleep? Apparently it is a no sleep zone. Too much pain I suppose makes it less sleep likely. And the vertigo is... annoying. Ever try to sleep on a rollercoaster? No? Tricky. How about more sleeping pills? Then we enter the Zombie Zone. But do I really need a brain?
  • Nausea and lack of appitite... well they sort of go together don't they? But really I have troubles with both when it comes to chronic migraines and both at once in the Zone. Ever try to cook a meal when the thought of food is repulsive and you are not in the least bit hungry anyway? If you're like me, then likely the answer is yes. And it sucks.

So I'm in the Zone... but I'd slept a lot. As in I had no sleep the day before and then sort of fitfully fell asleep in the wee hours of the morning the next night/day and then slept until 2pm in an effor to catch up with myself.  All that did was make me exceptionally groggy but my migraine pain slipped down to a low 5 and I though 'huh must be at the tail end of the zone'. Now my significant other man had wanted to go hang out with a co-worker and have me meet his wife who suffers from fibromyalgia. Fibromites Unite! And being as I am such a hermit and they had gone to the trouble to make dinner and set up the time and and and ... I did not want to cancel just because I was in the Zone.  Is there ever a good time when you have daily migraines?  Hell no.  Not lately anyway. The weather and such makes it brutal. So why not? No skin off my back. I'll suffer no matter where I am and a few hours isn't going to kill me, right?

Well. Don't socialize in the Zone. Bad idea. Go into a coma. Hide under a rock. Whatever. We went and it was great. Great chat, great food.  Maybe my brain wasn't all there and maybe I wasn't fully functional but whatever. I wanted to go and I went. The mistake was that I had four beers. Any beer is a mistake in the Zone. I thought it would be fine since I had been in such a mild pain state that I might have been at the end of the status migraine and in the hangover part... but no. I can have a few drinks, of beer only though, on a no migraine day (er, not sure the last time that happened... as I said I am a hermit and I don't socialize and I do get daily migraines so... not very often that all works out).

  The first beer was fine. The first beer is Always fine.  It is sort of numbing and that makes you feel good and socialable and chatty and then you have more fun and drink more beer. So the second one goes down great.  Then during that third one (and if you are a lightweight like I am due to the non-drinking thing then by number three you are feeling pretty darn good) but you feel that pain level spike up. It was throbbing, a spike of pain from my neck to my ear that hurt every time I moved my head and horrible ringing on that side of the head in my ear and some occasonally hearing loss, and this visual snow went nuts. 

Then I was like 'well shit, I'm screwed'. Now normally I wouldn't be, because we would have dinner and go home and I'd treat my migraine. But no, my man had had five or six beers and couldn't drive so I had no meds. No Meds. I thought well it won't get much worse. So I stopped the beer.  Ate supper.  Switch to something else to drink and hoped.  Too late.  It got worse and worse and worse.  And I'm trying not to show it because I don't want my man to feel bad that we can;t drive home, knowing I won't be able to treat the pain or sleep.  But I got quieter and quieter and began doing the Posturing.  My Pain Posturing.  In my case pulled my legs up so I could rest my arm on my knee and use that arm to support my neck and just hold it tight and rub it.  It was agony. One of those Movement migraines I get once in awhile where every little movement spikes pain through my head. The more you move the more it hurts. I had to stay as still as possible. I knew I was in for a long, long painful night of not sleeping. Honestly I wasn't looking forward to it with the pain being at a 9.

My man noticed my behaviour and my growing silence.  He went to talk to our hostess and told her I had a migraine and that we would have to go.  It had been a bit from dinner and he was sure he was now good to drive given the time that had passed from his last drink. Normally I'd say its better safe than sorry, but I was just so damned relieved. because that was a serious amount of agony I didn't want to endure all night long.  So we drove home and every little bump in the road shot into my head, everytime we slowed to a stop I felt it in my head. It wasn't fun but I was getting home so I took like a woman with her big girl panties on.

We get home and immediately I take my triptan and a painkiller and a bottle of water to hydrate. My man thought I should take my toradol shot, but always try the tripan first and see.  And I had to lay down and not Move.  Moving my head in just a small way was Killer.  Took four hours but it went away.

Woke up feeling fine.  And got a new migraine in the afternoon. Back to normal.

Nothing But The Water (I) - Grace Potter & The Nocturnals

The Open Pain Journal study on D-Ribose benefit for Fibromyalgia

The Open Pain Journal study on D-Ribose benefit for Fibromyalgia  I have honestly never heard of D-ribose at all or referenced for treatment of ME and FM.... but I guess there was a study done in 2006, a small study mind you, that suggested it was benificial and now a new study recently that supports those findings. Now this is a substance we naturally make and used as a supplament by athletes and in genetics disorders where these is a deficiency in energy production. After reading through the study I can see why researchers looked into it for FM and ME because I had heard there were low numbers in ATP production with the conditions and apparently D-ribose helps with that.  The findings are quite good and certainly intriguing.

The Migraine Project | Out of My Head 5 Min. Trailer | documentary film in the making by Susanna Styron and Jacki Ochs

The Migraine Project | Out of My Head 5 Min. Trailer | documentary film in the making by Susanna Styron and Jacki Ochs

A trailer for the documrntary... I look forward to this coming out, but I don't know what there timeline is.

Head shrinkery

So I'm randomly phoning shrinks (a term i use because psychologist apparently gets stuck on my migraine addled brain... and I like the term... it reminds me of those little shrunken heads) because I think its a good idea to attempt to take care of my emotional health in some fashion. Good days are good days, but bad pain days... well. they are just bad. And I figure it will make things easier to have someone to talk to who won't freak out. In the sense that chronic pain can be traumatic emotionally and volatile  Not always, but sometimes. And I think talking about it to people who don't get that scares the crap out of them. I know it scares my spouse. I think he worries a great deal when I say anything too serious about how much I am suffering such that I feel that I can't truly have an honest discussion about it with him because I don't want to scare him.

I don't know. Being in a great deal of pain is like being in the middle of the ocean trying to swim to a shore you can't see.  Sometimes you swim real hard, against the current, with all your strength even though you are really tired because you hope you are going in the right direction and you know there must be land out there somewhere. Even though you don't seem to be getting anywhere. Other times the water is as placid as glass and you just rest and tread water and try not to drown. Other times you are fighting the waves as they try to swamp you, just struggling to survive and you're not getting anywhere but you're not sinking either. And sometimes you almost drown. But the next day you're swimming to shore again. It is never constant. One day to the next it is a different sort of battle. So you can't say you're always drowning or always overwhelmed because that's not true. It's just that there is an undercurrent to your life that is this struggle, that is invisible and it is very emotionally taxing. And to try and express that and say at the same time that you are not severely depressed or suicidal seems like a contradiction  but its not... it just means suffering and pain whether you are happy, mad, sad or glad is a difficult thing to cope with which sometimes does make you depressed. It is easier when you can laugh and be in pain, laughter is such good medicine. And some people think that is impossible; that you can laugh and be in pain, but that is because they are morons who don't understand the nature of chronic pain.

I just think it would be cool to talk about the battle without the facade and without pulling my punches and without having to worry that I'm scaring someone with my honesty. Because honestly when it comes to work and daily migraines I'm sucking at coping which makes me far more volatile than I usually am, on the inside, but I'm just really awesome at hiding it on the outside. Just not as awesome as I used to be.

And then there is my procrastination... just because I think it is a good idea doesn't mean i want to do it. Other than blogging I don't actually truthfully talk about my true level of pain or emotions.... too real you know. It would compromise my facade for one. It would cause people to worry for another. And I'm inherently private and reserved. Even with my doctor I downplay my pain... as if being stoic is a virtue. If it is, it hasn't gotten me anywhere. I'm not comfortable talking about that stuff honestly because talking about it honestly makes me emotional and sometimes it is hard to deal with those emotions and it is a lot easier to keep them stuffed deep down inside.

Reality is really trippy

I'm going to say I'm thinking these thoughts I'm going to express because I have a wicked migraine right now with a wicked trippy visual aura. Kind of annoying really because the vertigo keeps tilting things periodically, but that aside, I'm going to get philosophical on you all.

Rene Descartes (and, yes, I wrote an article on this because that's how I roll) said we have to doubt our senses because we could be dreaming. It was his concept of radical doubt... if it could be doubted it should be doubted. So if I could be dreaming right now, then how can I know that what I sense to be true (feel. see. whatever) is true. I used to actually think he rather had a point except that with fibromyalgia and my extremely bad, unrefreshing sleep... I always know that I am dreaming.  I lucid dream a lot.  Because I really don't sleep well. I'm sort of floating in and out of sleep. So I dream and become rapidly aware I am dreaming. I'll be in a dream and just think 'this is not right' because it feels so wrong and then it is usually either straight lucid dreaming or I wake up because I don't like the wrongness of it. Likewise when I sort of wake up and get stuck in a sleep paralysis state, where you can sort of dream I know that is not real because again it feels very wrong. I can't describe it but it is very nightmarish to me in how wrong it feels and I struggle very hard to shake off the sleep paralysis because the sensation is so uncomfortable.  So I would say I definately know the line between reality and dreaming, but that does not mean he is not very correct that our senses decieve us because they do, because our brain decieves us.  Not just a migraine brain by the way.  Every brain.  Like optical illusions for example, we see what our brain feels to be true but it isn't.  Or in situations where it is filling in the blanks but not correctly. It brings in a boatload of data, filters it and provides us with the necessary information and it doesn't always get it right.

Now I must admit I have had a few incidents that occured when waking, or in the middle of the night when woken up that do not fit into sleep paralysis quite, since I wasn't stuck physically but might have been a similar state of stage one sleep where I felt awake and wasn't.  What I'm saying is I have had experiences I can't explain easily as sleep paralysis and I have no idea what they were. A)One occured in a house we were sure was haunted. I was sleeping and I woke up as I often do groggy and half aware, felt someone looking at me and saw a male figure in the corner.  Thought it was my bf and settled to be back to sleep.  Then woke up with somone sitting on the bed with their hand under my cheek, between me and the pillow. I thought that was wierd but I also though I was drooling so I brushed the arm away embarassing and it left. As in the hand left without the sensation of moving away and someone got off the bed without making a sound or anything. I opened my eyes and there was no one there. I searched the whole damed house and no one was home.  Ghost or waking dream? B) I woke up one night and I saw a very old man sitting in a wooden rocking chair at the foot of my bed.  He was watching me.  I think he might have even said something.  I stared at thim for a very long time, trying to figure out if I was sleeping or what I was seeing. To preserve my sanity I just went back to sleep.  C) I was trying to sleep one night with horrible insomnia when I saw the wierdest aura manifestation ever. It was all electric blue and smoky like and all in our area of the room, didn't move with my eyes.  It was about a foot by foot twisting mass.  I was captivated by it and just watched it shift and twist for a bit.  And then I saw a womans face in it.  She was speaking but I couldn't hear her.  ABC are all weird, but remember I am on sleeping pills, and always sleep deprived and often in very light stages of sleep awareness.  I just don't know what they were.  They make me wonder about reality and if I can ever know what is real and what isn't when my mind messes with me so much.

Now where Rene Descartes was right to doubt the senses is with us migraines sufferers... he really ought of used us as a primary example.  We can doubt our senses all the time.We get faulty information all the time.  What though about the visual auras we see?  I foubt a website awhile back who believed the sparkles from visual snow were real and mystical.  Could I say he is wrong? He sees them.  He believes they are outside of him. I tease my boyfriend and say maybe I'm seeing billions of particles of matter of billions of teeny tiny fairies.  But the fact remains if I believed my senses and seeing is believing then the billions of sparkles would have to be something other than my brain misfiring. Here is the thing though. When I was a kid I used to think I saw real auras of the mystical sort of people and plants and animals... and I had no idea about my migraines then or auras.  Now the auras I used  to see migraine wise where visual snow periodically, it had not been constant, I used to get the black, purple loss of vision slowly in one eye and that was the extent of my migraine related auras.  The auras I thought were mystical were always there.  A person had a white light around them and a little flame of light on there head and would bob around when they moved.  For some it was a larger flame.  Some people had colors most did not.  I thought it was pretty cool.  Now that I get so very many auras, and visual distortions where things move and warp and twist I have no idea what they was. But I do know I still see it, not as well as I used to but whartever that was I still see it.  A form of migraine aura? A visual problem even though my eyes were fine?  Or a real aura? Or is it Corona phenomenon an aura symptom where things appear to have light surrounding them... and given the amount of visual aura symptoms I have this one is very likely, if wierd. And if it is likely, then just like the visual snow... I've had it for a long time, well before my migraines were chronic... since I was a kid in fact.
If we can speculate it is a real aura then how can we ever trust our perception of reality?  What is real and what isn't real?  What is my brain misfiring and what isn't? How can I even know? Since it has been around so long it is just a weird unexlpained visual phenomena I know I shouldn't see.  Just like the visual snow, which I also knew other people didn't see and thought had something to do with my eyes when I was a kid or my low blood pressure... I had no idea what it was.

I'll tell you this... my world is becoming so distorted it doesn't much resemble reality at all. It is in fact very sureal. Walls ripple with waves of energy. I look at things and they move. I tilt to the left. The sparkles dance everywhere. (damn little fairies.) Some things warp and twist. Its insane. Looking out at the world with my migraine goggles on I am hard pressed to see what is real.  Yes, our senses do decieve us all right... but it is that dang brain that is mucking us up.

Venting and journal writing and the price of suffering

Before I began to blog a lot I used to write in a journal frequently.  Just to vent mostly. I found writing your emotions clears them from your mind a bit so you don't dwell on them as much.  And I like to write things down because I can then look back and say 'Oh right that is when that symptom started' which I often do with this blog actually. I lose a lot of Time to pain. When I'm getting daily migraines honestly not very much gets stored in my long term memory. I don't remember events very well. The details are very vague. The timing is also vague; the event could have been six months ago or two years ago but I couldn't tell you. I don't remember people very well. In my job this is difficult because I meet a customer and the next day I forget what they look like, even after dealing with them for weeks. I just don't seem to have very good facial recognition.  And when it comes to my health the intensity of things sometimes gets blurred over time. I may think for example that I was coping better five years ago than now, and that it is only now that the daily pain seems to be having such an emotional toll.  Which is bullshit. I look back in my journal and it is just Pain. It is just rolling with pain and desperation and the same thoughts I have now. It is not that you Forget, it is just that you are Surviving. It is just that your life is not a life at all, it is an existence which becomes defined by surviving the painful moments that stretch out into years such that everything else becomes indistinct and hazy. Everything is defined by the struggle. It is the constant undercurrent to everything. It is not that journal excludes the good moments, its that all the good things in your life begin to get pushed away and sliced out in the effort to survive. I can actually see it over time. The picture you get overall is just someone struggling to hold onto pieces, desperately and perhaps idiotically in the case of work. I have filled the void with my writing and that has kept me sane. And I have also filled the void with my connections with other people on the Internet and that is actually necessary, because to know and understand you are not alone in your struggle is very important. Nevertheless seeing all the undercurrent of despair and desperation over a decade saddens me a great deal. Partially because I don't think it is necessary that I have to suffer so... although in the past I have thought it was necessary. I thought I it was weak to express pain. That I would be worthless if I didn't work. Things like that. The guilt ate at me. But now I don't think this is necessary.  I think it is a product of how doctors and insurance companies see invisible disabilities and how the define pain and how they ignore suffering.  I don't journal about my pain level. I may say I'm getting daily migraines... but what follows is all about the suffering and how difficult it is to endure and survive.

I hate that I've been tormented for so long and my doctors simply didn't care to notice and didn't care to help. Is it any surprise we commit suicide? Really? This attitude doctors have in treating chronic pain has got to stop. If they can't handle it send us to someone who can.

I don't think the suffering is necessary. And I used to think everyone just expected me to suffer in silence because that made it easier on them. As long as I as At work no one gave a damn how much I suffered, which is true.  But I don't think I should suffer in silence. I think I should suffer loudly. And then maybe they will understand it is not about the pain it is about what the pain does.

So I'm glad I looked back.  And maybe I will journal a bit more again.  A little every day. Maybe something positive every day. Then a recounting of my heath. What I'm doing for my health action plan. Then what I did. That sort of thing.

Motion sickness and migraines

Both migraine and motion sickness may be due to low brain levels of serotonin "Scientists believe that low levels of a brain chemical called serotonin may make people susceptible to developing migraine headaches. Many people with migraine also have a problem with motion sickness, but it is not clear why this might be. We know that many drugs to treat motion sickness increase brain levels of serotonin, an important brain chemical. It is possible that low brain levels of serotonin may also be responsible for motion sickness. In this issue of Neurology,1 Drummond reports on a study that evaluated whether low brain levels of serotonin trigger motion sickness in people with and without migraine."

The connection is not news to me. Actually it is really an annoying thing right now given the whole vertigo thing, which apparently actually comes with it some motion sickness as well. There was also a study done a bit back that said children prone to motion sickness were more likely to have migraines when they were older... and I used to get wicked motion sickness. I still do on amusement rides and so forth.  But mostly my motion sickness is not triggered by vertigo.  Still, yeah, there is a connection.  But that being said I ought to have loads of serotonin given the preventatives I'm on... jeez, how much of the stuff do you need?

offically on leave

I'm on leave until October 14th, since they wanted to put me on leave until I see the new neuro so that's good news.  I don't have to worry until then.

I managed to do some housework today.  Cleaned the kitchen floor and the fridge. Combine that with the yoga yesterday and I feel like someone beat me with a stick... but that should go away if I keep up with the yoga. Er. Hopefully.

It was a bad migraine day though. So I couldn't do much until I slept a bit and tried to manage the pain.

Still got some housework done and even got one of my FM articles wrote... which I will dicuss tommorow, so not to bad productivity wise.  And that makes me feel good really.  Lessens the guilt from not working I guess you could say.

The world breaks everyone and afterward many are strong at the broken places

First little poster thingy I have ever created... it's based on my favorite quote by Ernest Hemingway... at least this part of the quote.  The first time I heard it is just made me feel stronger.  Yeah we are broken... but we are stronger in our broken places.  Because we survive.

A Good day

My day went well today. I took my Uber sleeping pill combo so I could sleep off a nasty migraine.  I slept in as a result and woke up groggy as hell, but not a problem if you don't have to get up for work.  And there was no migraine.

My mom came for a brief visit which made me feel good. I'm thinking we should set up times to do things together to get me out of the house to ensure I don't become a recluse.  Because I think it would be good to spend some time with her as well.

When she left I realized I was beginning to feel awake and I still didn't have a migraine so I  got the Wii up and running to begin slowly on some exercise.  Something I am capable of doing when I am not working. So I started it up and since the last time I used it last year I've lost 22 pounds. I figure from the Topamax, even though that seems a lot.  Crazy eh? I knew it was a lot, but I didn't think it was that much. It had started slow though, so it was hard to tell.  Anyway from there I did a 15 min yoga routine. It went well. My muscles are a little shaky and my balance is a little off. 

If tomorrow is a good day I might try some balance exercises to work on that. With all the vertigo it might help to be a little more stable.

I got a migraine later, but it wasn't so strong, not with such a good sleep.  But I did feel dopey all day.  So that sleeping concoction while useful to get me out of bad pain cannot be used often.

Agoraphobia, anxiety and fear

I wonder today if someone can develop Agoraphobia due to fear of leaving the house because every time you do it makes the migraine you have way worse or triggers one rather quickly. Plus a general fear of sun light. Is there a phobia for sunlight? There should be. Anyway since I am currently not working, for whatever duration, it is not necessary to leave the house and when I do I really regret it... I already was a hermit so the next step really is Agoraphobia. I actually had a shrink say I was devloping it last time I was on a short term leave. Maybe she was right, but maybe it's just general pain avoidance. After all its not fear and anxiety, it is just knowing triggers... whereas working, now that is begining to cause fear and anxiety. Nevertheless I ought to brave the outdoors occasionally because pain avoidance can unfortunately be habit forming, for good reason, but nonetheless.  Not so much for the migraines because they are consistently evil and lately very severe expecially as the day goes on.  But more so for fibromyalgia... the less you do the more it hurts, the more you do the more it hurts... so you kinda have to stay in the middle somewhere.  Which means doing a little something each day, no matter the pain level... a small bit of housecleaning or a little bit of yoga or an errand in that bright painful world.

For the last couple of days I've been just trying to relax because I don't know if my short term leave has been approved and if it has not, then I need the rest. These migraines are still acute and daily... might be due to the weather and so a little rest is more than welcome at this point. I find I can't let myself relax too much because I don't know if I can... I don't know if I will be able to or if I'll be going back to work and have to shore up my mental reserves for that. And that actually makes me anxious really.  Maybe because I have been in so much pain without work being a factor and the relief of not having to force myself to focus and consentrate and fake not being in pain for eight hours is so great I just don't want to think about having go back. Which just shows how emotionally drained I am I guess, that I know I'm too tired to put on that face for any extended time. I've done it for years and years and years... I bloody don't know how I did it to be frank because the last couple of years have been extremely difficult.  Like I said before, it is a matter of how well you can lie to yourself and when I you can't do that it becomes a very difficult game to play.  Some days you can do great, most days you're in survival mode and too numb to ponder your excistence but unfortunately there are too many days when you do think about how this is going to continue. That edge of hoplessness was not there before because I thought if I really needed help my doctors would have my back, but they don't. I pretend to hope they do this time, but obviously I don't believe it or I wouldn't have this anxiety... this anxiety is there because I'm waiting for the Call.  The last time I was on leave was after my suicide attempt, so it was a 'stress leave' I guess.  When my short term was up I had my docs fill out the long term and I would have thought given my pain and my obvious struggles to cope with it they would have given me some time, but then one day without any warning or anything I got a call from the insurance company informing me of my return date.  You can't image how upset I was to hear that message. It actually made me depressed for some time and then numb and then very angry.  It took over a year to recover from emotionally, but I was back at work and back in the same situation that caused the whole thing.  But now without any hope. I don't think I'll every forgive them for taking that from me because that is something we all need to lie to ourselves so that the endlessness of the pain is not so all-consuming when we pause to think about it.  We can shake the dark moods we get from the acute pain better if we have hope. I don't rebound as quickly anymore from those long painful migraine streaks. They cause more acute insomnia episodes. And anxiety. So yeah this break is good and yeah everybody (except my doctors I assume) would concur I should not be working and should be on long term, if just for my sanity... but I know it won't last and right now that is making me a little anxious. 

So I need to calm down.  Find that inner core of stability that is so hard to maintain when the pain is like a rollercoaster.  I want to find a fibromyalgia support group, and I know there is one in the area.  And I'm contemplating a shrink even though they seem to be next to useless and costly at that. I mean I am not nearly as moody as I would be when working because it is far less stressfull to handle the pain at home.  This is a damned good thing.  Because sometimes moody is normal but when the pain is acute and you can't sleep it can be scary. Nevertheless because I know this leave will not last and because I am anxious about returning to work already and because I know how difficult that is to handle in the long term... why not have someone prepare me mentally and emotionally for the pain trauma ahead of time right?

It took a lot of effort to get to the pharmacy today...

... and yet I forgot to bring my brain. It is not too difficult to remember my essential medications, given I was out of both my triptans and painkillers and had a migraine... so that there was incentive to go to the pharmacy.  I definitely remembered to get them.  However, I ran out of my script for my nausea med awhile back and hadn't filled it. Reason being the nausea I was getting which was indeed horrific was caused by the severe vertigo so I was taking the SERC and then when that was hurting my stomach I just resorted to motion sickness pills to just help me keep food down. I don't like to take the anti-nausea pills too often because they make me... edgy and frankly uncomfortable in my skin. So I just don't unless necessary, but with the vertigo being as it is and not necessarily wanting to take the SERC all the time either I want to have it on hand.  Unfortunately i forgot the name of it... which is really easy to do when it isn't one of the essential, necessary meds and its name is Insane. I think it starts with an M.  And that is what I said. Did I mention I had a migraine?  Anyway, when I got home and unloaded my pills I realized those were not the right ones because I remember what they look like.  I'm not entirely sure what I did get, given the list of medications I have on record is also insane but I think it was the med my doc put me on for a time to help my digestive system recover from the antinflamatories my previous doctor insisted were fine. I needed to take them for some time as I recall and they are still on file because I may need to take them again if my digestive system acts up... I certainly can't touch antinflamatories anymore or aspirin for that matter.  Point being... got the wrong pills.  And it is just insane how many you end up having on file for all this crap... not just for your actual condition; the necessary ones and the occasion ones, but also for the things that come up like horrible side effects that need to be treated after you're taken off something. I mean the fun just doesn't end.

'Pretend disabled really are sick' article... made me throw us a little in my mouth

I saw this on Facebook and I had to post about it because it really pissed me off.  This quote here where he says he would like to fake a disability like "one of those newly invented illnesses which make you a bit peaky for decades - fibromyalgia or M.E."  Link to article about how idiotic this dude is

Seriously WTF? The name fibromyalgia was made in 1976 not the freaking condition which went by other names prior. Do your research idiot. And invented?  Sure there is no blood test, sure it is hard to diagnos... but there is evidence... "There is decreased blood flow to areas of the brain; the thalamus section, which might explain pain sensitivity and cognitive functioning issues. There is high levels of “substance P,” a central nervous system neurotransmitter involved in pain processing. In other words, we are wired to feel pain faster, longer and that signal just keeps on going. There is also a hormone that promotes muscle growth that we are low in, somatomedin C. Low levels of serotonin, norepinephrine, dopamine and cortisol" Fibromyalgia: What is up with that?.

Fibromyalgia: Say What
Fibromyalgia Essenials
And you know it is frankly insulting that he assumes those of us with these conditions are running out there to claim disability.  Sure we are at higher risk to become disabled but that doesn't automatically mean we will or that we Want to be. I've never been disabled in the sense of being completely unable to work from FM, nor has my father.  Would I say I have a disability, hell yeah!  Would I say it limits my job options? Of course it does. And my ambitions and my goals.  And I had to suck it up like most of us do.  So feel a little for all of us with this condition working a job just like you, asshat, but instead with a crapload of pain, fatigue, fibrofog and on a few hours of sleep everyday without complaint.  And it sucks when we end up in a state where we admit we can no longer do it anymore. It is devestating and we are filled with guilt and we feel worthless, but some of us Have to make that choice. So thanks for minimizing our suffing.

I'm on a short term leave from work right now... but not for FM, godforbid I use the system for an 'invented illness that makes me feel peaky' but rather chonic migraines and honestly I get enough stigma with that without having to deal with people doubting the existence of FM... the condition that makes my migraines chronic in the first damned place. And enough guilt for not working short term.

Oh and thanks oh so freaking much for perpetuating that freaking idiotic stigma we get with this invisible disability that it bloody well doesn't exist... because we have been fighting that for fucking ever and we just need bastards like you to set us back years in awareness. 

I hope you do get FM and see how 'peaky' you feel... and then I hope you get declined for disability because that is often what happens.

Headache balm I like

Pureliving- Lavender&Chamomile Tension spot relief - I really like this stuff.  Which is sort of weird since I loath lavender... maybe it is the chamomile or whatever else in there, but I don't really smell the lavender.  I like it for migraines really.  I rub it on my forehead, temples, down my jaw a bit and behind my ears and down my neck.  I also use some stronger ones, but this one is quite nice, especially at night.  I've only gotten it as a gift so this is the first time I've gone to there site but they also have lots of other products in this line and others for aromatherapy.... but it is not so much the aromatherapy I like, although I bet it helps, it is just the way it makes the muscles feel I guess.  Like other headache balms really, but just a tad milder and more soothing.

Hazy heat wave foggy migraine blah

I wasn't going to use that additional sleep pill enhancer medication during the work week due to the extreme morning grogginess factor... but it suddenly got really hot around here and if I couldn't sleep before i sure as hell wouldn't be able to now.  So it was worth the risk and has been definitely since I have actually been able to sleep.  The ER trip, while not fun and rather expectantly physically draining for a few days, did boot me out of my pain cycle... sort of.  With some good sleep I'm back to not having migraines in the morning and getting them in the mid-afternoon.  Unfortunately they really kick it up on the pain scale riding the heat wave home.  And it is just damn draining melting in the hot house.  However, I have been taking my triptan as soon as I get home and that tames the pain a bit which then helps me sleep.  So sort of managing it.  Kind of sort of.  Best I can sort of.  Well, what can I say?  It is what it is right?  At least I am not taking too much medication and having too much side effects and having insane on the brain acute migraines not responding to anything really and missing work day after day.  Thats something.  I'll take what I can get.

After my return to work Monday... after missing three bloody days of work in a row my manager and I had a chat.  Now, keep in mind I left them in a Real hard spot.  I now work in a real small branch of just the four of us... one of us was on holidays.  Two of us have to be present at all times.  I was not there.  That meant neither of them could go for lunch or breaks, my manager had to do my job plus cover the staff member on holidays.  I was anxious about coming into work.  Really, really anxious... keep in mind with the amount of triptans I have been taking my heart rate and breathing issues means when I get anxious it means my heart rate starts to skip and stutter and do weird things.  Thats what I mean by really anxious.  Because at my old branch my anxiety was always bad after even one sick day, let alone two and I never had missed three... except on the day i tried to kill myself and maybe that's why I did it.  Then I knew I would be faced with a manager chat that would make me feel horrible in so many ways, more than I already do, more guilt than I already have, more trapped than I already feel more unable to know what the hell I can do about it.  I Dreaded it.  So I was worried all day.  But she says to me 'Maybe you should have a serious talk to your doctor about going on long term disability'.  Because she was concerned for my wellbeing.  She worried about all the medications and side effects and what the long term damage could be and how if I were on disability I would not have the stress, would not need as much medication and would be able to manage my pain better.  I was like wow, she totally gets the problem right there, but I did explain it isn't as easy as it sounds because I can talk to my doctor but it is the doctor, the specialist and the insurance company that have the say.  if the doctor doesn't fill the forms out thoughtfully and with detail it will be turned down.  Or if the insurance company pushes the issue they might not fight about it.  I told her I worried about trying to get it and being turned down... know, for sure, the option wouldn't be there if I needed it... I think that would make me really depressed.  She is right though if I try and they turn me down then things will be no worse than they are, right?  I just never had a manager give a crap about me, personally.  She is a real good person and I hate letting her down but in the end, the pain makes me let down everyone, even myself... it just knows how to take.

Sunday at the ER... cause that's how I roll

Yes, that's how I like to spend my Sundays, how about you? No? Well, me neither. But it needed to be done. My doc wanted me to go in do I could get some Maxeran in me, which is an anti-nausea med but he says has interesting properties to help break a pain cycle. Skeptical? I am. Mostly because this pain cycle has been insane in the brain, but I said I'd go and go I went. I regret not going on Saturday because then I could have recovered from the ER visit on Sunday, but that’s hindsight for you. Besides Saturday started out as a low pain day and I thought that meant I could manage the pain without medications and maybe that would coast me out of this nasty streak... but I was very, very wrong... the acute migraine kicked in in the evening with a vengeance.

So when I got up at 10am off I went. Even though the migraine was not bad yet. But stepping outside into the hot damned sunny day made it worse and then waiting into ER worse yet. So I guess just throw me a trigger or two and I'll be ready and ready I was. By the time they managed to get my IV in I was seeing a very vivid purple aura all across my visual field. By the time they hooked up that Mazeran it was a vivid warping field of gold. Very pretty.

Then you wait. And wait. And wait. And get a bit nappy. And wait. Then you start to get freezing and you wait.

Then they hook up the next med the actual treatment med, which in this case was DHE (after arguing with them about toradol... serious I know they are in love with toradol but it doesn't always work and they were all like but then we can try something else and I was all like no then I'll leave, I got literally dozens of medications in me and you want to put two in me and then what just keep adding more to see what will freaking happen? Just pick one?!) *sigh* Where was I? Right. DHE. Hooked up. and then you wait. And wait some more. My already low blood pressure drops and my heart rate goes down to 54. More waiting. My heart did I weird fluttery thing where I thought maybe it’s just going to stop. More waiting and then the pulsing part of the migraine just dissipates. Nice. More waiting. Then the intensity of pain begins to slowly diminish. Great now I can ditch this joint now that my machines are beeping.

More waiting. Nurse comes to tell me doctor will come.

More waiting. Doctor comes to say I can go home once they unhook me.

More waiting. More waiting. Contemplating unhooking myself. Ah, nurse comes in and unhooks me.

And that would be that... but shortly after getting home I developed nasty pain in my feet, knees, elbows and wrists. WTF I say? I think it must be from the DHE but damn does it hurt... its like a sudden fibro flare. Then later that day my heart starts skipping and thumping weirdly. Then worse than that I got diarrhea for about two hours.  So... the treatment had some rather not nice side effects to come with it.  Not nice at all.  Still migraine is keeping real low level 3-4 and maintaining.

Overview of Fibromyalgia and sleep dysfunction

Overview of Fibromyalgia and sleep dysfunction

Guess where the inspiration for this article came from?  Yeah, that's right... lots and lots of counting sheep.  I mean with FM insomnia is a very bit deal.  In fact with me I'd say it was my first symptom, so when there was that theory FM is in fact a sleeping disorder I thought that made sense... but whether it is or isn't sleep dysfunction is a huge part of the picture.  Right now mine sucks because of migraine pain intensity... but pain intensity is one reason why we can't sleep, so there you go.  With FM, and with migraines (cause lack of sleep is a Huge migraine trigger) we can't sleep cause of the pain, and lack of sleep increases the pain.... and there you go.  But with FM insomnia is quite a bit more complicated than that unfortunately.

I feel like a poor me moment... but I'll resist the temptation

It has been a craptastic week, I'll admit that.  Three missed work days in a row is actually a record for me, but I think those fantastic sleeping pills might have something to do with that.  They work a little too well.  And waking up, well, not really waking up and being in pain seems to create a sort of non-willpower vortex I can't resist.  And I find that really, really depressing.  So I spent most of the day in a bit of a mood funk.  Which I don't like because pain and lowered moods are frankly rather dangerous.  Or they have the potential to be, at least they do for me.  I appriciate my doctor trying to assist me with tweaking my medication but it seems to have had the opposite effect, side effects suck and unfortunately while decreasing my Topamax has stopped those wierd nightime seizures (as far as I know) it has also increased my migraines... a lot.  Thusly the craptastic week, a lot of sleep deprivation until I got the uber strong sleeping pill enhancer and then its the opposite, but also just acute migraine after acute migraine.  So obviously that will begin to affect a persons mood.  All that pain makes a person go a little crazy.  Because the toradol shots seem to cause a great deal of stomach pain I decided that might be... not a good idea, and went with my trusty triptan instead.  But using a triptan too often for me causes issues with my asthma and so now I feel... craptastic really and think maybe I ought to double up on asthma medication to counter the difficulty breathing side effect of using a triptan more than a couple days in a row.  And it should not be this complex to deal with a migraine or pain.  And it should not be this... insistant... I feel the need to try and abort this horrific migraine because I have to go to work (obviously that did not work, but just as obviously it is my freaking job and they pay me to be there) and so I have to do something, even if something is going to have a negative effect... because I hope it will about the migraine and I can deal with the side effect.  But, nope.  Nothing can abort these migraines.  Or at least not for long.  Because without the awesome seizure causing topamax I'm back to daily migraines and they just trigger themselves.  You may be able to sort of treat one but it will come back twice as bad and the next day you'll have another and then what will you treat it with?  The fact I'm having breathing issues because I tried again unsucessfully to treat this damned acute migraine in order to get to work is what depressed me today.  Because this is how it is going to be and I know I'll just have to deal with the pain and go to work and just suck it up.  So I had a bit of a poor me moment when I thought about that so I have to stop thinking about it.  Future thinking is never a good thing when you are in a lot of pain.  Moment to moment thinking is best.  I'll have to stop taking that sleeping pill booster for sure because I'll need all the willpower I can muster to get out of bed and get to work, so I'll enjoy the sleep while I can this weekend.

Hormonal Migraine info

My mom forwarded this link to me on hormonal migraines (menstrual migraines) that I found interesting because it lays out treatments that I have not heard of and some I had. National Headache Foundation: Menstrual Migraine I'd heard of taking NSAIDs for the duration to help prevent and treat and for a bit that is what I did back when I was able to take them... but those meds eat your stomach to hell.  Or maybe it was just what I was on, or just that I have IBS because of FM that makes my digestive system a little more finicky, either way, that is a no go for me.  I had not heard of taking magnesium preventatively, but I know it is good for migraines... as I mentioned a bit back it can be difficult to find the right magnesium to take if you have digestive compaints and I have been having problems with that, but it is definately a good idea to do so.  Also had not heard DHE referenced in regards to hormonal migraines... the only triptan I remember doctors mention was good for hormonal migraines specifically was amerge.  I'd actually heard in regards to some doctors recommendations they suggest taking amerge, or maybe even DHE I guess by the sounds of it, every day for the three to four days needed... because the hormonal trigger is consistent and the migraines acute so you need to be aggressive.  Doctors do not always get that.  I try and tell my primary that all the time... I say these migraines are the worst of all my migraines, they last days, they are in fact One migraine, they are acute and I can get quite sick if they persist.  I miss the most work from them and if I do not get a handle on them off the get go then I'm screwed for the duration, but I can't take antinflamatories and I have been told not to take my triptan more than three times a week or more than once a day and my painkiller is a rescue med that is not rescuing me from anything and certainly does not even touch these nasty bastards.  Seriously these migraines are in a class of their own.
Acute Treatment Medications that have been proven effective or that are commonly used for the acute treatment of MRM include nonsteroidal anti-inflammatory drugs (NSAIDs), dihydroergotamine (DHE), the triptans, and the combination of aspirin, acetaminophen, and caffeine (AAC). If severe attacks cannot be controlled with these medications, consider treatment with analgesics, corticosteroids, or dihydroergotamine.

Preventive Treatment

Women with very frequent and severe attacks are candidates for preventive therapy. For sufferers taking preventive medications who experience migraine attacks that break through the preventive therapy perimenstrually, the dose can be raised prior to menstruation. For sufferers not taking preventive medication, or for those with true menstrual migraine, short-term prophylaxis taken perimenstrually can be effective. Agents that have been used effectively perimenstrually for short-term prophylaxis include: naproxen sodium (or another NSAID) 550 mg twice a day; a triptan, such as frovatriptan 2.5 mg twice on the first day and then 2.5 mg daily/ naratriptan 1 mg twice a day/ sumatriptan 25 mg twice a day/ or, methylergonovine 0.2 mg twice a day; DHE either via nasal spray or injection 1 mg twice a day; and magnesium, equivalent to 500 mg twice a day.
The triptans, ergotamine, and DHE can be used at the time of menses without significant risk of developing dependence. As with the NSAIDs, these drugs will also be more effective as preventive medications if started 24 to 48 hours before the onset of the expected MRM.
Fluoxetine, especially if the headache is associated with other premenstrual dysphoric disorder (PMDD) symptoms, can be an effective headache preventive between ovulation and menses.

Hormonal Therapy

If standard preventive measures are unsuccessful, hormonal therapy may be indicated. This may involve the use of a supplemental estrogen taken perimenstrually either by mouth or in a transdermal patch. Estradiol (0.5 mg tablet twice a day, or 1 mg patch) is the preferred form of estrogen because it does not convert to the other active forms of estrogen.
For women using traditional estrogen/progesterone oral contraceptives for 21 days per month, the supplemental estrogen may be started on the last day of the pill pack. Another approach for women who take an estrogen/progesterone oral contraceptive is to take it daily - that is, without the monthly break - for 3 to 6 months. This has become accepted as a standard practice, and in Europe this approach has been used for up to a year with safety. The reduction in menstrual periods provides a method of preventive treatment. National Headache Foundation: Menstrual Migraine

Just when you feel things could get good they just get bad

There was a time a few months back when I felt I was potentially getting to the point of getting down to the 15 migraines a month.  That may sound rather sucky but daily is far worse.  I was put on Topamax in addition to my other preventatives in January and I was beginning to get migraine free days mixed in there randomly for no reason other than to mock me I suppose but there was also a decrease in some migraine intensity.  Hard to say for sure, but it seemed like the intensity was diminished because I found myself using less triptans... I usually hold off on using triptans because if I can only use them three times a week I want it to be for a damn acute one not a moderate one.

Then I started getting some problems with vertigo that were sometimes damned severe and other times just disruptive and other times preventing me from sleeping (hard to sleep when you keep feeling like you are falling).  This got worse when I started commuting to work. 

Spring migraine season started which makes things worse.  I mentioned to my doc Topamax was causing disturbing middle of the night seizure like phenomena so he reduced me down to 25 mg.  But to help with the brutal migraine stretches he gave me toradol shots.  I seem to be getting stomach pain from the toradol shots and while the shots work really well when they work they don't always work.

I have been having severe problems sleeping because I've been getting actute migraine after acute migraine.  When I get them at night or into the night or I cannot treat them... I just don't sleep, even on my sleeping pill.  I either get 3 or 2 hours or none at all. Obviously that triggers more acute migraines and makes it all so much worse.  So I went back to the doctor becuase this can't continue and he added something to take with my sleeping pill... because that's what I need... more pills.

I'm missing an insane amount of work.  Not too much... way too fricken much.  I have absolutely no control over these migraines lately.  They are all acute.  I can't treat every one of them without causing more problems, but I also can't sleep if they are not treated.  Mind you, not every one I take a triptan for actually is aborted and if it isn't then the painkillers I have are too mild to be of any use and the toradol might work, or it might not, but I worry about the stomach pain its causing.

There is just too many of them and too acute.  Add in some serious sleeping issues and I am totally screwed.

Just won't quit

Must be the beginning of migraine season or something.  My killer migraine hormonal episode is complete which the toradol shots partially helped kick.  The weekend therefore was relatively low in pain.  More like a migraine hangover than anything.  I had an annoying ache that was sharp and persistent but didn't really go anywhere from there. 

Unfortunately, I can't say the same for today.  It started off with that same persistent ache and then mid-day just jumped into full migraine mode.  Not that I didn't get a heads up, because I did. I started getting dopey, my eyes got wonky and then the migraine kicked in.  I just did not want to treat it because it is the weekend and as such I tend to want to resist medication to reserve for workdays... because I just Love to be in pain on days off.  Or maybe it is because I have to face the facts of having to use medication when I need it, which unfortunately is to muddle through work.  Unfortunately for me, this migraine is like the ones last week and is rather brutal.  So it sucks to be me really.

I will have to see what tomorrow morning holds.  At least I have the toradol as a backup to bring to work with me.  If in the morning I wake up with this beast I'll aim for a triptan and see if it does a damn thing but if it doesn't at least the toradol shot will get me through work.  And that is what it is all about, isn't it?  At least that is what it seems like it is all about.  Sometimes I wonder why i bother trying to maintain this charade of trying to work full time... and then I remember its because I would need doctors to back me to go on full time disability through work insurance and they don't seem inclined to think its a problem. Sometimes I want to just beat them with a frying pan until they get the sort of pain I'm going through and then make them work through the pain and then repeat it for a month until they have just a minimal understanding of the word chronic.  But whatever.  Point being, I need to save the meds for work pain days.

Can hypermobility increase pain in Juvenile Fibromyalgia syndrome?

Can hypermobility increase pain in Juvenile Fibromyalgia syndrome?

I had no idea about this but apparently they have a class of fibromyalgia call Juvenile Fibromyalgia... so they are actually looking at children and teenagers and diagnosing them properly.  Would have been nice had they done that when I was younger because I was one of those people with FM that had it at a very young age and so spent a lot of time going to the doctor for blood work and tests and no answers.  Took a long time to get my diagnsis and by then it was pretty bad.  So I'm glad they have finally figured that out... not everyone gets in their thirties or older and not everyone gets it after a trauma or illness... sometimes we have the symdrome and it just slowly gets worse over time.

I also have hypermobilty syndrome.. that I was diagnosed with early by the way.  And it is one of the things that is comorbid with FM, a lot of us are hypermobile and apparently about 40% of JFMers are.  I wonder if it is just those who develop it as children who are more prone to having it or if it is all around common to have this co-occur and I wonder why so many of us have this... FM is in the brain and it is all about the nervous system, where as hypermobility is the joints and connective tissue. There doesn't seem to be a connective... wish those researchers luck on that one.  An interesting puzzle.

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...