Status migraine surprise!

Well day three of an acute migraine and it isn't a hormonally triggered one. Yay. Not fun. I tried my triptan the first day. It did the sort of decrease the pain for a bit then it came back full speed ahead mate. And the neck pain and was insane!

Next day still had it but I tried to temper it but then accidently aggravated it and then it was full on acute again, but obviously due to my sensitivty to triptans I just tried later in the day to dull it a wee bit with tramacet (a mix of tramadol and tyanol) and that did so very little, but brought it down just enough that at least it wasn't a screaming 10. And the neck pain was insane!

Day three was acute from dawn to dusk. I said screw it to medications because obviously they were doing nothing and at this point could make it worse... hard to say on a migraine like this. So I went for stay in the dark, don't move, don't do anything that would trigger more pain, rest, use muscle creams on my neck, migraine balms all over my forehead, temples and jaw. And that did nothing. I'm hoping it will help with the neck. I'm going to put some capcacian cream on it before bed.

And I was nonfucntional today because of the pain. Completely nonfunctional. Which is what happens when you have nothing left to treat an acute migraine. And because it has been three days of this my aura symptoms are intense. My visual snow quite honestly has been increasing in intensity anyway lately, just like my motion sensitivity related to the migraine associated vertigo. But today in my dim house... I can't see across the room the vs is so strong. Just looking at the walls right now I can see it clearly, and not anything else clearly. With that my vision is messed up. It keeps sort of blinking (goes dark for a split second) and sometimes the frame of my visual field tilts when I try to look at something. There is vs on the computer screen, and afterimages every time I look away from it. After images when I look at anything bright really.

Essentially if it is dark I can't see anything
If it is light I can't see anything well, because light distorts, hurts and I still have vs, and warpy migraine brain.
If it is dim... I can sort of see the best here but not very far and not very well.
Awesome... there is now no time of day where I can see well in.

At least the MAV isn't bad... well until I move, or am in a moving object, or watching something that is moving. Or trying to sleep. Or when I get up. Or randomly.

So close and yet so far away

Yesterday I had an acute migraine. I treated it with a triptan. It half-assed worked. The pain came back for a second round of kick ass. I threw my hands up and said 'you win' and went to bed.

Round two: I woke up with a migraine hangover from yesterday which really when you look at that on a pain scale was like a 4 but my neck was killing me because it had hurt so much the day before. Still I thought I could manage quite well at this stage as long as I avoided any triggers.

Then I did my housecleaning which is part of my assigned routine. I was finishing the bath tub I started yesterday  I did the tub, now I needed to do the walls. Can't do both at once with my nerve damaged hand and my weak FM arms. It's a two day event. So I used the same cleaner. And BAM acute migraine, rapid onset. I can't use the triptan again cause that will aggravate me side effect wise. I have no figured out a way to use the toradol shot yet that will not feel like some is using my stomach for kick boxing practice. So I used my tramacet. On a migraine that is what I would say was about an 8 going on 9 at the end there... that is not even close to adequate. So there went the rest of my day. I couldn't do anything.

It was just one of those days where you think I am on the end of a migraine or the cusp of one... so if I'm very careful I might maintain it. And then some trigger just screws you over.

So two acute and not very well managed migraines in two days. Not even moderate migraines. I just got over my hormonal status migraine so it sort of pisses me off but what can you do? It happens. I have good cleaning products that never trigger a migraine... just the bath tub was Dirty and that requires stronger stuff because my arms are too weak for really good scrubbing, what I did was quite enough. That product was too strong for me. And it was also too damn light. Just too light.

Point is this: I have not had a migraine free day in a very long time. These meds are not working at all. And I am getting a lot of acute migraines, also a bad sign. But they do work on my migraine auras... not the persistent migraine aura, but something anyway. I need a change, but just I think an increase in Topamax which worked well in the past. Verapamil does nothing really for me, so that can be taken out for all I care but if so it might muck up the vertigo and aura... so it depends what replaces it really. Lyrica I like for FM, but for migraines it does nothing, so it depends really on whether the neuro thinks it is necessary or not. I personally think topamax as primary, maybe a calcium channel blocker of a different sort as secondary and if there another that works for MAV and persistent migraine auras that doesn't conflict add that in too.

Reasons a migraine is not just 'a headache'

Spining and spinning

I was reflecting today on my recent trip and all the visual wonkiness. The vertigo and the associated symptoms of migraine associated vertigo have been around for a long time but they have always been anomalies. Or they occured with migraines... generally morning migraines that were full blown acute and had that 'alice in wonderland syndrome' feel to them anyway. It was never anything I was concerned over. Just migraine wierdness. When I started getting episodes as I was falling asleep and in the morning it also didn't bother me because I have such insane sleep issues and when sleep deprived I get hypnotic jerks, of which that falling sensation or spinning is associated with. So it sucked because it is hard to sleep when it keeps happening but it is hard to sleep with hypnotic jerks as well. Then there are the incidents that were associated directly with motion... vertigo from airplanes, elevators, amusement park rides or when I stop my car at a light... ranging from mild to sever depending on the type of motion. Then came the incident of severe vertigo that lasted weeks and then has periodically persisted. All of which apparently is migraine associated vertigo... except it is becoming more severe and definately more frequent. What it seems like is that my brain has become insanely sensative to motion. As insanely sensative to motion as it is to light in fact. And my persistent visual phenomena is varied and pretty intense. My visual snow is more severe as well. And I wonder if the vertigo is linked to the visual phenomena. If they both are getting more severe. And if so, why the hell is that the case. But I can't make that direct link because the visual snow and visual auras have always been bad and never responded to treatments that have historically worked well in such cases. My eyes get strained from the vertigo because they can't track motion or focus properly and this in turn makes the visual snow very vivid. The real question I have is why the vertigo symptoms are occuring and why they are becoming so frequent. The reason it concerns me is because it severely affects my ability to function. The persistent migraine auras are a problem. On that my neuros have never really seems to take as seriously as I have because they can seriously distort my vision... which I believe makes it dangerous to drive. Certainly with visual snow we are talking very dangerous to drive at night, which I don't do but obviously being in Canada does happen in the winter time. I choose not to drive at any time except to work because work is not a choice. And doctors obviously never had a concern over my ability to drive or work even when I expressed both. Even when I describe in detail all the visual weirdness that occurs... which is a lot with persistent migraine auras. Visual snow is the big one, but there is a lot of wierdness there. Point being I just find ways to try and make it better. Avoid certain times of day. Wear sunglasses outside. Tinted ones inside of a rose color. Use indirect dim lighting. Avoid bright lights of all sorts, including sunlight. With MAV ""dizziness; motion intolerance with respect to head, eyes, and/or body; spontaneous vertigo attacks (often accompanied by nausea and vomiting); diminished eye focus with photosensitivity; sound sensitivity and tinnitus; balance loss and ataxia; cervicalgia (neck pain) with associated muscle spasms in the upper cervical spine musculature; confusion with altered cognition; spatial disorientation; and anxiety/panic." added to my persistent aura and I have something very, very perceptually disturbing triggered by a migraine, by motion, by hormones or by lack of sleep. Or a combination. So what happens is the event is triggered and I get some sort of vertigo (some sort of sensation of movement where there should be none; in objects, on the floor, falling sensation in my head, spinning in my head, lurching feeling due to feeling the floor fell away on one side, swaying motion by feeling I am falling forward or to the side) combined with extreme loss of balance, sometimes falling, obviously my usual photosensativity, usual ringing in the ears, neck pain may get worse it is always pretty bad, a growing sense of confusion with altered cognition (space out, hard to focus, things look weird, feel too fast) and spacial disorientation (things look really 3D or too close). It is very disorientating and the more movement you are experiencing the worse it gets and the longer the phenomena will last. AND you have to then consider while I am experiencing that I also see billions of sparkles in the sky (blue field phenomena), have visual snow where there is a cosntant feild of moving static overlaying everything which makes the sense of vertigo worse because everything looks like it is moving, warping fields in the sky, warping of objects, inability to focus well, jerking eye movements, lots of afterimages, trailers, floaters and so forth. And all these seem to combine because one aggravates the other which aggravates the other. It is insane. I feel very disorientated and not focused at all. Now knowing from this road trip it will just get worse the longer I am exposed to motion and the effects wil last longer is discouraging. It means it is around for the long haul. And that is a frightening thought. How can I function like that? In that state I can't do much. I sure the fucking hell should not be driving. On the road for a few minutes and I notice the motion, feel it, then notice how it looks wrong how the road is too fast and the trees too slow and my eyes start going weird, soon after that I can't track very well and can't read the road signs anymore. When I slow down to a city it is work from the change in speeds and then things are moving at should not be, everything seems wrong too close and I can't seem to consentrate properly or understand as I should. Unless they can properly treat the vertigo. And even then the persistent aura is still there and it is bad enough that it is dangerous. Frankly, all that aside, people should not drive with migraines... be sometimes we do if we get them all the time and we can't call in sick every day. I don't get why the MAV if thats what it is, is getting to be like this, but I sure wish I knew.

Trippy road trip

I don't have any real good shots of my road trip into the Rocky Mountains because I took them with my good camera this year which means I have to get the film process but when I do I will likely post some of the good ones on my tumblr account. Anyway after this post you can see a few snapshots. It was a short trip. Half of it travel... beautiful scenic travel. The sort I absolutely love. And we took a few strolls on some of those stops. And it was great. The visit with family was short but it was just a chat and catch up visit and I really enjoyed it. I love visiting with my grandmother. Honestly since I had a status migraine I could not have done much of anything more than just sitting and chatting anyway. I had a slow release painkiller to help me get though the day which did work pretty good, but the pain was always back up to a 9 at night; still I'm glad I brought it since it made that migraine tolerable for the day. So to me it was perfect. Just what I was able to manage and getting to see my relatives. Next time I will make it longer and add in relatives from the other side of the tree. And bring my man along. So pain wise it was manageable because we took our time and it was a nice mellow trip. I mostly had a problem with the fact status migraines are so long and untreatable that the other symptoms can be equally intense if aggravated. The migraine associated vertigo is aggravated by motion so the drive time really intensified those effects, causing effects I had never even had before, to ones I have had. The lurching, dropping sensation, swaying sensations, feeling like you are still moving, the ground still looks like it is moving were more frequent but familiar. When we stopped at a construction side and I could not see out of my peripheral vision because it looked like it was raining particles sideways... that was new. The persistent migraine aura also was worse likely because of my light sensitivity... light was aggravating me a lot. And it didn't take long to notice that the blue field phenomena was stronger or that the visual snow was significantly stronger (or the area grandma lives is darker... VS is worse in the dark). Either way it was getting warpy all the time and worse and worse at night one the VS got worse. And then on the right in that episode with an aura in the center of my vision that was so intense with dots of white flashing rapidly in the center then pulsing out into this large pulsing bit in the middle of my vision... that was an odd aura.
On the road again

Rocky Mountains

Me all ready with my specs and hat

Me ready to crash at the hotel
At my Granmothers setting her up on a new email and Facebook account

On the road home-decided I needed even less light

On the road again... Trees are turning... Fall is here

Caught some deer on the side of the road

Still thirsty even after all those pee breaks

Mini Vacation

I'm on a mini vacation with my mom to visit family. It was a great idea and has taken my mind off my pending neuro appointment and pending review of short term leave. A good distraction and if I do return to work a good time to take a trip.. trips are easier when you can recover from them with no worries. Anyway it has been awesome.

Timing was a wee bit off though since I am right in the bad migraine spot. So on the drive up I ensured I was careful on treating my migraines.. I was not driving of course. My mom was, which was a long drive even though we broke it up into two days. Anyway, into a migraine storm as it were as well. Driving means motion and driving through mountains I suppose even more interesting... so aura wise it has been spectacularly intense. I noticed some swaying vertigo. As in when we stopped to eat I would still feel motion and would sway forward or to the side, and that has been off and on for days now. Or spinning sensations. Then in the center of my visual field I had a very intense flashing pulsing light that expanded for a good hour. And since that day the visual snow has been extremely bad. It can be with these status migraines anyway. And it might be that I simply am noticing it more. At my grandmothers where we are staying I do not smoke inside... so I go outside and at night I sit out there and stare at the sky...and all I see is this insane static. Everything is difficult to see and the motion of it is likely what is making me so dizzy and triggering that vertigo sensation. I look at the siding and that static over it warps it so bad my brain does not like the motion and I can get that swaying sensation or my visual field will tilt or my vision darkens. I know it is always worse at night which is why I never drive at night. But where I live there are more lights... which actually make it worse in some ways, but make the VS less obvious in others. But here it has been severe. Even inside with soft light it is bad,but then that is like home. So maybe it always is this bad when I have a status migraine. If so.. I worry about commuting to work in the winter. My vision is very compramised. But, I do wonder if the vertigo is directly linked to the visual snow. I mean it seems when the visual snow is worse at night I get more vertigo sensations... because it literally looks like there is a field of static over everything making everything look warpy and shifty and distorted.

Approaching the line...

Almost time to see the new neuro. I wish he was a genius. I bet he isn't but I can wish. Problem is I think chronic migraines are all tangled up with fibromyalgia... expecially the more I research about fibromyalgia and how it functions neurologically. Problem is neurologists have no interest in fibromyalgia. They should. Clearly it is their field. But people are still stuck on all the old terms and all the old definitions and all the old crapola. So I don't expect him to know much of anything about fibromyalgia or comingle treatments or even consider the syndrome as a serious contributing factor. It is obviously a serious contributing factor. There is the huge issue with sleep, the lack of, that triggers migraines for me and pain causing me not to sleep... and that cycle of hell. There is the heightened sensitivity to light and sound and my enviroment that makes triggering a migraine so easy and really makes me photophobic all the time. There is the very nature of how FM works by intensifying pain, by not dampening pain signals, that make it likely to be the contributing factor that made me leap from episodic to chronic in the first place. Then there is the problems with medications and treatments.

Then there are Symptoms. Symptoms concern me a great deal. A neuro looking at migraines always sees migraines. Just like when I go to the doctor for any damn thing they say 'oh thats just FM' and don't do a damn thing about it. Each has their little box to put things under. But what if something can potentially belong in both boxes? Or another box entirely? Like the nerve damage in my hand? Could have been caused by a crazy status migraine from hell. Could be a comorbid FM thing. Could be a symptom of something else altogether. But the neuro went for migraines and thought no more on it, without testing further. Same thing with my intense vertigo episodes. Could be migraine associated vertigo. Yep. I have all the markers for that. Although that is an odd phenomena in itself since it does not fit with regular criteria. And odd that I keep getting neruological symptoms that are occuring with or without the actual migraines. And again its not like he tested for it. And... and... it could be an FM thing. Vertigo, balance issues, dizziness, perceutual nuttiness... all that can occur with FM. So why did it get so much worse? Well I got very sick for one. That made it worse. And motion triggers it. And I do have very bad VS which makes things look like they are moving and warping which also does not help. And I've been sleep deprived and that also is triggering it. So it being worse could just be a symptom getting worse... FM gets worse. But again, hard to say when no balance testing was done. Now since no one bothered to do any testing at all that whole being very sick thing, where I had gotten a very bad flu could mean all that vertigo could be an inner ear issue and have nothing to do with FM box or migraine box. Or it could be Ménière's disease which actually I have heard many people with FM have and would explain the ringing in the ears and the periodic hearing loss. I get disgusted with assumptions. And they always make assumptions. The SERC med my doc gave me actually is for Ménière's disease ironically, so if I have that I'm being treated for it, but unfortunately I can't really take it because it really hurts my stomach... as does anything with a slight chance of a side effect of hurting my stomach, even with food. But it does work by the way... even when I don't feel that intense vertigo and I take it in order to drive so as to Not feel that horrific vertigo SERC makes me feel more stable and straightens out the world. I have not taken it enough to see how effective it would be for a more severe attack because seriously that stomach pain is unpleasant.

If this neuro would actually Look and test those two symtoms to see what they hell is going on then I'll be ahead of the game. And maybe a vertigo medication that will not cause such pain is my stomach would be nice. Or maybe I should consider taking that med to heal my stomach again? Which was damaged by another doctor. Yeah. Sometimes they do more damage that good. Then there is the VS symptoms which are equally problamatic.... and my other neuro did try to help with that but it is just as bad or worse now with all the Movement and Spinning. Honestly I feel drunk. Maybe I should just get drunk and it will counter the drunkedness to stabalize it all? lol. Not likely.

Anyway, why do they think they just Know? My doctor never thinks he just Knows. He always sends me for tests and when he doesn't know he sends me to specialists. Specialists just think they know. Or at least the ones I have seen lately. I mean just because your theory sounds right and logical doesn't mean it is in the right box. Back in the day I had symptoms that All sounded like FM... and I thought I was just flaring like hell, but my doctor at the time suspected something was up and sent me for bloodwork and discovered I had hypothyrodism. Go figure. The symptoms are similar, the hypothyroidsm just made me feel worse is all.

Part 3 - Fibromyalgia: New Insights, New Hopes

Part 2 - Fibromyalgia: New Insights, New Hopes

When he mentions the lack of dopamine and therefore our brains inability to turn off a continuous pain signal that was cool to see verification of that... but then to mention the fact opiates don't work if your dopamine does not work... maybe that is why so many people with FM myself included say we don't find painkillers that strong, we don't get a 'high' off them, and often they are not that effective. For example for migraines my tramacet is so mild it is barely useful, but its the only rescue med I have and I can't take my abortive all the time. Fricken brain. This guy is doing good work though. I think I luv him and I hope he is still doing it. Think of all the people he could help by seeing what is wrong and where it is wrong.... it could develop actually effective treatments.

"Fibromyalgia: New Insights, New Hope" Part 1

I'm stronger in my broken places

I love this quote: The world breaks everyone and aferward many are stronger at the broken places
Because with chronic illness we endure a lot of pain and illness and suffering but we endure and in the end we know about pain, illness and suffering. Challenges happen to us all and we are stronger for surviving them. And we learn a lot about ourselves and others in the process. Admittedly over the course of my illness I would say I was completely broken by it twice and after the first time I was definitely stronger for it and after the second... I'm still working on it. By that I mean I had a dark bout of depression when I was 18-19 caused by all the undiagnosed pain and other symptoms. I conquered that depression myself with some serious changes and effort and went on to succeed. In aug 2010 when the chronic migraines became too much for me I tried to kill myself, and after that I was stunned and disillusioned at how indifferent doctors are to that, how nothing changes, but I changed, I felt different, it was a profound and important event in my life. But I'm still working on all that. Dealing with acute chronic pain in new ways and such. Being able to talk about my life is a good think... I might just be one of those high statistics.

My story is rather long and boring really and likely resembles the story of other people with Fibromyalgia because it takes years upon years to be diagnosed and so we spend a great deal of time being tested for many, many things and just trying to sort of cope as we go along. Unlike some the syndrome did not begin with an accident or illness to trigger it for me, it just sort of developed as I got older. I suppose you could say I had some symptoms quite young but I would not say they were problematic until I was around twelve. Then the fatigue, insomnia and aches were becoming noticeable... as was my lack of attendance in school. Sometimes just to 'catch up on sleeping'. I always remember being tired and yet never being able to sleep... that ultimate contradiction. It was a progression from there. And more symptoms.

Different doctors. Different diagnosis. Hyper-mobility with chronic soft tissue pain. That sort of thing. By the time I was in University it was significantly worse. But at least I could intentionally choose courses that did not start in the morning, at least after first year. I learned all about cognitive dysfunction in university. I did not know the cause of it. Did not know a damn thing about it, but I knew it was there. I knew my body was failing me, but it had failed me for years and now my brain was failing me... and I held that to be precious above all else. But I prevailed. I learned to do something I had never needed to do before... study, and take notes, and learn new methods of studying that enabled me to absorb information, and new methods of taking notes. And editing, and more editing. I was diagnosed in during this time in my life, but hell, by they anyone could have diagnosed me with a simple checklist. All over pain: check. Fatigue: check. Unreshreshed sleep with other significant sleep issues: double underlined check check. IBS: you becha check. Migraines: frequently checked check. Fibrofog/longterm memory problems/short term memory problems/working memory problems/uncertain there is a brain actually present and accounted for problems:check? 100 symptoms... all accounted for mostly And that is why I like the quote above. This time in my life over and above any time in my life I feel like I was victorious. My freshman year nearly broke me with all the pain and fatigue and the spike in symptoms. I actively chose to decrease my stress to reorganize my thoughts to be more positive and effective and get back up... and go forth and conquer those books. And I did. And it was awesome. And I have the student loan debt to prove it. It was damn difficult. Physically I was on a downward slope and I sure didn't know at the time there was no bottom, but it didn't matter, because emotionally I had battened down the hatches and mentally I had fortified my mind. And I had good friends, my brother, and a nice new boyfriend as a pretty awesome support network.

So yeah fibromyalgia. What a mouthful it was. I already knew it was the diagnosis before I walked in the room. By then my father had been diagnosed with it. And as I said it was pretty obvious. Unless it was one of the similar conditions. It could only be one of a few things. And so... what to do? According to the specialist at the time... nothing. Keep in mind that was over ten years ago. Man that makes me feel old. Anyway, he said I was too young for medication. I just needed to exercise and such but he never told me what sort of things to do. It's not like I wasn't already walking to school every day, walking the dog, rollerblading and so forth. These things by the way were extremely difficult. Sometimes the twenty minute walk to school took about fifty minutes and it was not a pleasant forty minutes. I tried certain exercises for muscle toning and it was insanely painful. I had no idea what to do and what not to do. And nowhere to get guidance from. So I just continued to cope as I was. And the flare ups of pain... such as chest wall pain for one job could be extremely intense. But that was how I learned what not to do. Also how I learned what jobs I was incapable of doing. In other words I learned all my coping skills the hard way. Specialists really sucked back in the day. And doctors sucked too, some still do. One back then, when I was getting those severe chest pains, which just got worse and worse because obviously I kept going to work and doing what caused them to get that way... told me he did not believe in FM. So that was that. He did not even look into the chest pains. Which my regular doc looked into and it was costochondritis but was so damned aggravated it took six months to stop the pain. Nasty that. There is a lot of frustration with an invisible disability when it is so invisible doctors don't even treat it. So much that you hesitate to mention it after a while... which is not good at all. But that is what happened with me for years and years. Doctors knew I had it but I rarely mentioned anything unless it was significantly worse than usual because they were indifferent to it and did not actively treat it. I felt like I could just deal with it. Because I like being stoic and in denial like that. I am woman, hear me roar *and silently screaming in my head*

As such it was not treated at all. Period. The comorbid migraines I mentioned got worse over time and became chronic. They got insane in the brain chronic. Maybe because of the FM I was always sleep deprived... maybe four hours of sleep a night. And then Lots of sleep on the weekends to 'catch up'. I had gotten my degree and went on and received my Masters. During my graduate studies the migraines and FM combined were stressing my ability to cope. The pain alone was making it very difficult to concentrate and focus. The methods for studying and researching I had developed for my undergraduate studies were not sufficient because with constant migraines I could not think straight... I would 'think in circles' and just could not comprehend things well. Literally would sit in a class and listen to a prof and not understand what he was saying I was in so much pain. (now I would just have a lap top and record it) I wanted to go for my Phd but I knew I would not be able to function at that level. The migraines doctors took seriously by the way and were just beginning to treat but they were affecting my ability to focus and think even more. So I made the difficult decesion not to persue my academic career (this was profoundly painful because since I was younger knowing my physical pain all I ever wanted to do was find I job I was passionate about- and I had- but the pain and the cognitive impairments took it from me) and found an alternate career I thought I could maintain. One I currently struggle to maintain. I have been working in a bank for seven years now. Struggling just to keep the job. I've had four or five short term leaves already... am on one now again. I can't function with the amount of pain I am in but don't know if I will 'qualify' for long term.

Now while my neurologists tried every drug imaginable to try and treat my chronic migraines, a difficult task when I have such poor quality sleep and am already so sensitive to light and sound, HE mentioned a drug for fibromyalgia as a Migraine preventative that might also help treat the FM..

And that is my story.  How in a very round about way my migraines led to a medication called Lyrica that actually helps for my fibromyalgia and does nothing for my migraines. It helps moderately since I can't be on the normal dose, but well enough to get some relief and no significant flares of pain which is nice. Point is, it is very important we stand up for our own treatment with doctors. I did develop my own coping strategies and I did research all I could about FM and joined online support groups... but I certainly did not get any help from any specialist, pain clinic or doctor I can tell you that. I was really far too passive about it. I think because they knew of treatments and had knowledge about migraines they felt comfortable trying to help me with them and at the time I was fine with that because my migraines were and are a very serious problem... they are too frequent for me to actually be able to function. And frankly as a second part of my story, it is a crappy one, because I am crippled by pain at the moment and learning new strategies to cope with it. A learning process I assure you. But FM is the foundation of my health problem, linked to the migraines and linked to the triggers and having my doctor ignore that is hardly a good thing. You want someone to help you with ideas and to be proactive. Not necessary a drug pusher... but to have knowledge and help you with solutions to all the problems associated with FM. Not just the pain, but all the symptoms and your overall wellbeing.

Is work working for me?

I've had a love hate relationship with work for several years now and I think most of us with chronic illnesses can relate to that. We want to be self sufficient. We often tie our identity and self worth to working. We like to feel functional and that we are contributing to society and to our families. Work makes us feel good about ourselves. It is also a distraction from thinking about our pain. It gets us our of our minds and out of the house and engaged in the world. Not being able to work at all is a huge adjustment and one I have yet to make because I have not been able to give up that piece of myself yet. Partly because I feel like if I take away all the benefits I'm not sure if I can fill the void sufficiently. And partly because I know the insane battle the go on disability associated with invisible disabilities such as fibromyalgia and chronic migraines... and I don't have much fight in me these days... it seems my personality style of cooperation is to try and just do what others want because it is easier mentally even if the longer run it is substantially more painful physically and emotionally. And partly because I know if I tried to go on disability and failed, then knowing I could not have that avenue open to me might be the straw to break the camels back.

Unfortunately we all have to ask ourselves whether work is working for us. Are the positives that we get from work sufficient to make up for the negatives. And what are the negatives? Can they be overcome in different ways? Can we change jobs? Work less hours? Work from home? Get accommodation? Or have we exhausted all these options already?

Getting out into the world and being engaged with people is a huge benefit. I know when I am on short term leave I tend to retreat and isolate. I have to force myself out into the world. Because everything triggers pain and if it is not Necessary then I'm less inclined, and I'm an introvert that does not exactly thrive on people anyway... so hermit mode is what happens. And I like interacting with customers and co-workers. I may be an introvert but I have carefully cultivated a facade to mask my pain of laughter and chattiness. So I actually engage quite well with people. My co-workers have been awesome to me. And this is definitely not always the case with chronic illness. People can think we use our illness as an excuse to miss work or to work less. Or that we are chronic complainers and are 'always sick'. Some seem sympathetic to our faces and behind our backs mock us. Some are sarcastic about our illness. Some try to understand but end up being insulting by comparing their minor temporary aches to our acute chronic pain... or say that if we only did 'such and such we would feel better'. Some people are constantly negative and are hard to just Be around. I have not had too much trouble where I work, or I have not associated with anyone who was like that. I have worked with people who genuinely cared that I came to work in as much pain as I did and tried to function with it. And genuinely cared when my employer did not. And genuinely was not bothered when I was forced to miss work due to my illness. People like that made it easier for me to be open and honest about my disability. I could say how bad it was... although often I did not. I could explain the more complex and strange neurological symptoms of migraines that complicated things. I could talk about treatments. I could be more honest with such people and I like to be honest about my disability. For years I never mentioned I have fibromyalgia to anyone at work because of the stigma and because even doctors deny it sometimes... I'd rather not get into it if it is that hard to explain. But if people understand then it makes things easier. They can see how the pain and other symptoms affect you to some degree and they can understand the struggle. But even the most understanding of co-workers will not stop a person from feeling guilty for calling in sick so often... for being sick so often. Because that is not what an employee or a responsible adult does, right? I never could convince myself I had the right to be sick, maybe because my employer didn't believe I did. So the atmosphere you work in is a major concern. if the people are horrible then sometimes you need to consider working elsewhere and I have done so in the past for that very reason. negativity sticks to us. Sometimes we feel we have no choice however and so we stay and that can cause a great deal of stress. But giving up that daily human contact might not be worth it in the end.

Discrimination in the workforce is not always as obvious as we think either and this as well can be a huge stressor. I never had a problem with the people I worked with but I did have a problem with management. Not at first and not in ways I noticed at first. It was insidious. And over time. And when I think back on it very cruel. There are managers who will motivate you. Who will accommodate you. Who will help you to work around your illness and make you feel productive, functional and feel like you are still able to succeed. And there are managers who will make you feel guilty for calling in sick. For being sick. Who will tell you how you are failing yourself, your co-workers and your customers. Who will imply if there are lay offs... you need to be concerned because you are the least functional. Who state if you miss more work you will be demoted... for your own good. You do state if you only did such and such you would be better... like they are doing you a favor by giving you advice on how to live your life.  I felt horrible for missing work and anxiety about going in the next day. I dreaded 'meetings' because I knew I would be made to feel guilty, ashamed, worthless and often there were veiled or not so veiled threats. Now at times there were some things that were likely discriminatory and illegal. But some things were just words and words... over time were worse than the threats honestly. When i was threatened with a demotion to a position that would make my migraines worse and I felt my job was threaten, this was the consequence if I missed one more day (mind you I had missed a lot, although they did a year later have this 'reviewed' by my doc and the insurance company and was proven to be perfectly valid, but at the time they thought threats were more appropriate than the proper channels)... I decided to try and push through the pain and no matter what get to work, just ignore it and get there, take whatever I needed to be there even if I could not really function. Well, this never works, and the migraines became acute and daily and I became emotionally fragile from trying to endure them. Then an acute status migraine came along as they usually do, and they are more emotionally volatile and constant pain. I could not go in. And so... I tried to kill myself. And you have to ask yourself at that point... was my job worth all that? I put up with all that for years and years because I was made to feel like I should feel bad about being sick because a part of me did feel guilty about being sick. So don't ever, ever underestimate the power of a hostile work environment... it is corrosive. And if you have assumptions about your self worth associated with work or your own guilt, one person in authority can magnify that. Add that to the stress of feeling like your job is constantly being threatened and you are never ever doing enough to please them no matter how much you do and how much pain you are in? And don't ever think it is acceptable for an employer to treat you like that. I got angry After I came back to work from recovering... coming back to the same environment and the same comments. But I never should have put up with any of it. Not the comments and not the threats and not even the actions that were borderline illegal. If you have an employer like that either go above them, go to your HR department or throw the comments back in there face and tell them how discriminatory they are. because sometimes I wonder if it is just incompetence in dealing with an employee with a disability that leads to this sort of situation. Maybe it is the mindset of treating them like a child skipping school or something. Or thinking if they threaten you suddenly you will tow the party line like you were never 'that sick to begin with'. And if it is incompetence they need to learn the proper way to handle the situation. For years my manager mishandled me and for years I took it and yes it increased my stress and decreased my self-esteem. And maybe it would never have made a difference. But we have to deal with a lot of pain and acute pain can cause depression and anxiety (and migraines in particular as a prodrome which can cause intense severe depression if short in duration, but that is what got me, along with severe sleep deprivation) and then that manager doing the same thing can have horrible consequences to someone emotionally and mentally. Honestly that infuriates me. But enough about that. Seriously don't put up with it. You deserve better.

So what are the negatives about working? I found them to be: When I work full time all my effort is for work and there is nothing left over at the end of the day for anything else. I had no social life. No energy. Barely any housekeeping got done except on weekends. My spouse cooked and did the groceries. There was nothing left over. Just work and home. And when I got home I was in acute pain. Because work for me meant I would get a migraine (which I might treat or might not, because I can only treat three a week, which leaves the rest to be dimmed by painkillers somewhat)... so by the time I got home it was horrifically acute and I just wanted to lie down and sleep. So no chatting with my man. Just sleep. Then I would get up and he would go to bed for work.

I also didn't like that work was a constant struggle. With chronic migraines and fibromyalgia the pain was always there. Migraines were up around 6 to 9 on the pain scale over and over. FM pain was not bad but the cognitive impairments added to the migraine ones. And I made so many data entry mistakes. And forgot policy. And corrected my own errors when I found them. My thinking was hazy. The pain difficult to impossible to ignore. It impaired my language skills, written skill, verbal skill, my vision. The worst was when it hit my digestive system... not fun. Days when I get up with a migraine I didn't want to drive cause I knew it would make it worse, and the vertigo worse. And I managed to do this for seven years at my current employer. But it is torture. Plain and simple. There were days I would pray for a stroke or a heartattack Just for a rest. I knew I couldn't keep doing it. And I ended up on short term leave four or five times as a result... not that these helped or changed anything. Pain like that consumes you. You focus so hard on getting through it. It is survival mode. And nothing else gets through. it is hard to remember anything else because you are in so much pain and foggy that nothing gets into your long term memory, so your life from all that survival mode is just a hazy blur. And you have to wonder if that is worth it? Being in so much pain all the time that the goal is just to get through the hour to get through that day to get through that week. Nothing else matter. Is your job worth it then?

So what do you do when you realize you should not be working? Where do you start? I'm asking these questions myself. I have a doctor who is rather indifferent and I'm not sure he would support me for disability. That is not good. But firt step for me was to get on short term leave for work. Then go to my specialist. Then get a shrink... I never did that before, but I think doctors and speciasts need to see the emotional impact of the illness to help make their decision. The next step will be getting the neurlogist to sign me off for a continuatin of my short term and hopefully put me on long term. I got a 50/50 shot I'd say. Then if go for more permanent measures there is CPP and AISH here in AB Canada which again I would need their support on. Also a good pointer is going to like your local fibromyalgia society (or MS society... or any of the disability society if there is one) to a) get support and information and b) see if they have a free lawyer who will help you if you are declined. We need friends in arms for these things. I swear insurance companies just like to decline for the sake of declining.

Then if you so get on long term disability you have to find productive ways to fill that void. You definitely have to ensure you deal with any feelings of guilt and low self worth that may arise. We most definitely can be productive members of society and not work a traditional job. And sometimes we find unique job opportunities that work with our disabilities. Sometimes we volunteer. Sometimes we pick up passionate hobbies. And sometimes we support causes.

Migraines messing with my mind

Back in the day I was a philosophy major and I think there is a great deal of irony in the fact I loved to spend my time thinking about the distinction between Appearance and Reality. What is real is real, right? It just is. I was always certain of reality, but I was never certain we could truly know it. And as time has passed I am even more certain of that fact. Maybe the average person depends on their brain to tell them what is what, but they are fooled from time to time, even if they are not aware of it. Optical illusions being an example of that. The brain needs to filter a great deal of information and make patterns out of it... and it is not always right. So we can never be sure the reality we perceive to be true is the reality that is really there. People depend far too much on what they can see before them. It is why our invisible illnesses seem to fool people so often. How can you be sick and look fine? How can you be in pain and smile? So confusing isn't it? But that is not the confusing I'm talking about. That shouldn't be as baffling as it is.

No,what I'm talking about is when your own brain plays with your perception of reality in bizarre and strange ways. I get chronic migraines and often what is most common associated with them would be the pain and most definitely the pain is enough to drive a person mad. I get migraines with aura and that 'aura' is the part that messes with your perception of reality and it is the part of my invisible disability that is likely the most perplexing and difficult to describe to someone who has never experienced the phenomena before. It is a lot of false data is what it is. Ghost sensations. Neurological brain misfiring before a migraine. It can come in the form of tingling, numbness, ringing in the ears, hearing loss like a bad speaker, a visual aura like a blue and black smudge that takes over my vision, or white lights that obscure it, problems speaking, vertigo, dizziness... lots and lots of weirdness followed by a lot of pain. I could get into each of those into detail because combined with pain and adding into that the fact chronic migraines occur more than fifteen times a month and you get a neurological nightmare that seriously impairs your ability to function on a day to day basis. However, what I want to discuss is when the brain decides it really wants to play with your perception of reality and makes it a permanent state of affairs. Something strange happens with chronic migraines. Brain overstimulating I suppose. Too many migraines I was told. I'm 'always in an aura phase'. The unexpected becomes the expected. Fall down the rabbit hole and make yourself at home with the Mad Hatter. (And actually by that reference I mean to say some of us actually get Alice in Wonderland Syndrome to add to the overall funness but that is another story for another day).

What I'm saying is that sometimes we get Persistent Migraine Without Infraction which is a longer lasting aura phase to the migraine. By which I mean it can last days, weeks, years even... not involving the migraine at all, just this prolonged neurological aura phase weirdness. And a common one is called Visual Snow (some people get this without migraines by the way, but it is a common persistent aura). Now the same visual part of the brain the lights up like nuts during the aura phase of a migraine is what goes haywire with Visual Snow, just permanently. And it can be a very debilitating condition all on its own because it can severely distort someones vision. It actually does distort mine in the moderate range; enough that i can't drive at night and enough that details are sometimes... obscured. I find it fascinating that reality becomes so... distorted because of this condition. Fascinating that what I see is so different than what others see, but so similar to what other people with visual snow see. Because visual snow comes with its own set of symptoms. Some of which the average person is well aware of because they do experience them to a lesser degree... like after images and floaters (those little round circles that follow your eyes sometimes), and ringing in the ears, but these are just more common with visual snow people.

One of the common symptoms of visual snow is something called Blue field entoptic phenomenon- When we look at a blue sky or any bright surface we see billions of little bright pin-pricks of white lights dancing. If you did not know that this was actually a symptom associated from white blood cells moving in capillaries in front of the retina in the eye, which some people can see faintly while others, such as those with VS see vibrantly, what would you think it was you are seeing? Would you think it was something wrong with your eyes? When I was younger I thought it might be normal then I thought it might be because I have low blood pressure. Some people though think the phenomena is something outside of there eyes... because they are seeing it and for them it is reality. They are spectacular to see certainly.

The visual snow is commonly described as being like a TV without reception with the black and white static, but people see visual snow differently. Some have colors in their snow for example. And the Intensity varies. It is a grainy, staticy movement imposed on everything you see all the time, but worse at night. It makes things indistinct, surreal and distorted. I often think of it like a Claude Monet painting... sort of indistinct but with movement, shifting. At night I would say it is... not a good idea to drive because the distortion makes things too indistinct. During the day I can see the the static when I look at a wall or anything, it makes things grainy, or pixel-ized, but it is more clear.

So imagine seeing like Monet painted but with Movement. Constant movement of tiny dots. It has a sort of unsettling effect. I always find it a little hard to really focus on anything when it shifts like that. And actually with chronic migraines I get a lot of vertigo anyway.

Then with chronic migraines there are surges of well migraines which cause episodes of my perception to warp. The background of the world can warp, pulse, shift... blink in and out even. Objects appear to be moving when they are in fact still, shift and warp. Severe light sensitivity during the day makes it impossible to see without sunglasses and the blue field phenomena is quite distracting without them as well. As the daylight diminishes the visual snow increases and reality becomes more surreal.

Obviously I know that static I see in the background is not there... but I don't know how clear people do see. I mean maybe to some extent they do see things sort of pixel-ized like I do. Or is it crystal clear?

Obviously I know objects at rest in a room are not in fact moving... but if they in fact did move, I would not know it.

Obviously when I get bouts of vertigo I know the ground did not suddenly drop beneath my feet... but my body tells me that is the case, I feel like I'm falling and I still stumble. My perceptions all say I'm falling.

Obviously I know there are not a billion little dancing particles of light dancing in the sky... but I see them every day.

Sometimes I can't tell if things are moving or not when everything seems to be moving and shifting.

Sometimes I can't tell if I am walking straight or not... the world is not right, the walls too close the floor made of sponge or also far too close or sometimes the ceiling is too close... it is like a funhouse and I'm always stumbling into something or falling but not falling. Or just falling.

I walk in a world of appearances and can never be certain of my reality. My reality is never firm or stable. My perceptions never giving me the right information on the reality around me. A very weird state of existence to be in. I have to say it is an interesting component to chronic migraines and an invisible disability. Chronic migraine sufferers often have a hard time getting people to understand the complexity of their disease. The idea that it is not a 'headache'. That in fact the pain, the part of a migraine is a symptom like all the others and in fact sometimes people have migraines without the pain at all. And calling it a 'headache' undermines the seriousness of the disease... because of the intensity of the pain felt for one, the fact that it is a neurological condition for another and the fact it has many other symptoms. People die from migraines. People are crippled from the pain of migraines. People kill themselves to escape the pain of migraines (I don't want to understate that fact either since I tried that myself a couple years ago... acute pain stresses our ability to cope and then all we think about is our core existence around our pain past, our pain present and our pain future and not all the other aspects of our life. Pain has the capacity when it is acute and lasts a long time to consume our minds.). Chronic migraines are endless and difficult to treat. And trying to explain anything beyond the symptoms of pain and nausea people associate with migraines is very difficult. I try to describe a world of sparkles, and sudden episodes of falling sensations and warping visual fields... and it is beyond comprehension just as much as chronic pain can be. It is my reality and it is a weird one and I share it with many other migraine sufferers. And it is but a fraction of our neurological symptoms. A picture if you will of our inner reality... when appearances show nothing is wrong at all, right? You can't see pain. You can't always see suffering. And I suppose you definitely can't see the sparkles.

What I see

What the world sees (other than the fact every picture I have sunglasses and often a hat, you would not know I have chronic migraines, right? lol)

Invisible Disability Week

Invisble Illness Week - check out the link for ideas to participate- there are more than a few of them!!
September 10-16, 2012 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 10-14 online for free with speakers.
2012′s theme is INVISIBLE ILLNESS? SHARE YOUR VISIBLE HOPE! This is a chance for participants to upload photos that show their hope to encourage others (both ill and healthy).
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See

The Wii broke my arm

I'll tell you one thing my neuro never told me about this nerve damage in my hand... that it would not only cause numbnes, but that it would also make it clumsy, have sharp burning pain and that the hand and the whole arm would be weaker than my left side... and I'm right handed.

I learned this from trying to do housekeeping.

I further learned this for exercising. I was doing my Wii yoga which was cool. After I was done I thought I would do some balance exercises so I did. Then for fun did some tennis and bowling and that there was a mistake. Now remember fibromyalgia and exercising comes with a certain amount of immediate pain a fatigue so i thought nothing of it at the time.

Today the pain in that arm is way over and above the level fibromyagia would cause given the very limited amount I had done. We are talking maybe 5 minutes for a few mini games involving arm swinging... no lifting weights. The pain radiates from my shoulder down to my fingertips. I can't rotate my shoulder fully at all. I can hardly hold my arm straight and roatating it huts like hell.

The best laid plans of mice and men...

apparently are not made of fibro migraine afflicted people. Plans go array all the time. Plans just suck. I actually avoid them at all costs but when I'm not working I need to enforce some sort of Routine. Work is something that is mentally and physically exhausting and extremely painful to the point that you cannot do anything else other than try to maintain work, and generally the pain alone causes cognitive impairments that make it a bit tricky to accomplish, the pain itself is a bit tricky to endure. But without work you do need to substitute it with something... because nothing is also painful and causes equal harm. Okay, not 'equal' but you will feel sluggish and sore and cruddy. Not as horrifically bad as working with FM and chronic migraines will make you feel for sure. Frankly knowing my short term will soon be up for review is sort of freaking me out... no one looks forward to more pain, especially not long term acute pain. But I'm just going to pretend for now it isn't a factor. I'm just going to pretend I'm working on a routine for a long term disability. And coping with coping. Like for once my doctors are actually going to give me some freaking time to deal with the pain.

The less you do the more it hurts. Everyone with chronic pain knows this. It is just one of those things we learn along the way but it is also a matter of balance. Because the more you do the more you hurt. So what the hell are you supposed to do? The key is if you are fortunate enough to be not working at all, which means not on the extreme side where you are just enduring pain, then you need to adhere to a routine. Routines are what the fibro body likes. It does not like any sort of fluctuations or changes At All. Ever. So maintaining the same sleep cycle, eating cycle, and other routines makes it happy. And also makes us able to remember some things better if we always do them at the same time... because honestly even with moderate pain we still have fibrofog heads.

And we need to have some moderate exercise to replace the mobility we had when working, no matter what job that was. You move around a lot during the day, therefore you need to ensure you are still moving around a lot. We all know too much sleep hurts because we cannot lie down in one position for too long without pain. Sitting for too long hurts. Standing for too long hurts. So adding in short walks, stretches, some yoga and that sort of thing help replace what is missing. Everybody will say it makes you 'feel' better, emotionally and so forth and it is 'good for you'. I really don't know about that. I don't get anything from it other than knowing that not doing anything causing muscle pain and stiffness and doing a little bit of something makes my muslces a little limber and loose. But the act itself still hurts and makes my muscles tremble... and I never over exert myself, that is a big mistake when it comes to exercise, but I do know when it comes to FM there is always some pain involved and that pain always lingers. And because it lingers I find it very difficult to do daily, I tend to do it every second day, but I figure i can work up to daily assuming there are no flare ups. Bit by bit, slowly but surely. Migraines complicate that a great deal of course and if I do choose to exercise with a migraine it obviously limits what I choose to do.

Unfortunately while the fibro body loves a routine it also loves to screw a routine up with bouts of pain and flares of other symptoms and horrific insomnia... and so it is more like having a schedule and trying to beat the habit into your brain, but the brain never learns the habit... you just keep trying and trying and it keeps damn well rebelling.

And I have been trying. It hasn't been going so well. My shrink thought up a new routine and asked if I thought it would be good and I said sure thing... because it sounded similar to the one I was already trying, so why not? Well so far not so great.

A) sleep cycle- she thought it would be good for me to adjust my sleep cycle to a more normal sleep cycle so that if I do have to go back to work it won't be too much of a shock to the system. Considering work makes me constantly sleep deprived, I don't think it will make much of a difference. What it does do is ensure I am awake-ish during the 'day' which means 'daylight' which apparently means 'lets get a migraine really early in the morning'. You just can't escape the light during the day. The first day I got up early, got a wicked migraine which effectively screwed the rest of that days 'plan'... and sleep... which then ensured I did not sleep well at all due to the pain level, which then ensured I did not get up early today and I woke up with the continuation of that migraine and hid in my bedroom where it is dark until I finally gave up and came out where the pain got worse... so I delayed all the rest of the 'plan' until it got darker. Generally this is what happens when i work as well. I force myself to work with a significant amount of pain, until the lack of sleep makes things difficult and the pain severe then I have to call in sick and then I sleep way too much... or just lay there.

B) Exercise- she wants me to do 20min of housework first thing in the morning to get me going, 20min of yoga at 2pm and a 20min walk at 7pm when it is getting eye friendly outside. Well the first day was screwed on all accounts considering I could not function at all once that migraine hit. Day two I managed to do a little housework later sporadically like I usually do (could not do anything in the morning due to pain levels and honestly I think it might be tricky at the best of times due to severe morning grogginess), pacing, and did do a walk which was not fun, but no way I could do the yoga. And yoga is one thing I like to do, but I am not capable of doing it on bad migraine days which would be yesterday and today. Today is not even a bad bad migraine... it is a day i would work with a migraine, because I can 'think through the pain' but I cannot move my head very much so not a yoga day migraine... the pain continuation from yesterday is just too intense for that, and frankly it would be a bad work day. And frankly if I had left the house today, like yesterday and drove around, it likely would be way worse.

So routines are necessary. Mobility is necessary. Trying to maintain a sleep cycle is necessary. But acute migraines sort of win. They either totally screw a day up or bump things around. I also believe in pacing. You can't force yourself to do things in intense pain... it just makes it last longer. But you have to maintain a certain level of exercise or you will feel like crap. And somehow you have to find that balance.

What a pain in the...

I left the house today to get my hair cut and go to the pharmacy. I seriously needed a haircut. And i chose to go to a friend who has a salon in her house. I figured I have not socialized in.... honestly too long to actually remember. I have not seen her in I figure a year since she was not aware of events that happened a year ago... that is how I tell time, by events I know somewhat the timeline on (my brother recently got engaged to his girlfriend who he has been with I'm told a year, ergo since she was not aware of this, it has been more than a year). I have no other perception of time passing. I thought I had seen her fairly recently. So I thought why not go see her for my haircut since I really like her as a person and I can chat with her and help her business at the same time. It was cool. We chatted for a few hours after. I had a real good time. Bonus over and above that... her salon in her house does not Smell like a Salon usually does, so that did not give me a migraine.

So I had not woken up with a migraine. It was a nice cool cloudy day out. I did not get a migraine when I went for my haircut/visit.


I went to the pharmacy and on the drive I felt on coming on. Got to the overly bright pharmacy to wait for my refills and it came on strong. By the time I left there it was a full blown acute beast of a migraine.

Lesson of this story. Every time I leave the house with no migraine I literally have about three hours tops before I get one and it is usually acute. I'm not sure if it is the driving, the sunlight or what... but it is every freaking time.

It was bad enough that I took my triptan and this would be two days in a row which I avoid, due to the fact for me triptans begin to cause shortness of breath, heart irregularities and all that fun that increases when I use them in consecutive days, even if I do not go over the 3 Day Rule.

The triptan worked. But as usually it drained me and made me want to sleep, so i took a nap. I just had to. Those things should be marketed as sleeping pills. I always hated taking them at work because forcing yourself to stay awake after it was basically forcing yourself to work with a dumbified brain.

The pain sort of came back at night but not much. But I have such a pain at the base of my head. There is a spot right at the back about an inch before the neck mucles start going down that hurts like hell and has all day. It is very tender. Not like I can put a muscle rub there or anything is there? That spot is always sore, cause the whole area is tense and sore, just not this much.

Doing the Lurch

This whole vertigo thing is messed up. It is rather hard to sleep when you get into bed, you snuggle into the sheets, you get comfortable and then you Fall. I would assume the bed would be stationary and not thrown onto some random amusement ride. But my brain on the other hand is all for fun and games. It is just a lurching fall. Sort of fall and jerk. Then stable. And repeat. It happens when I am falling to sleep and it happens in the morning.

It happens after plane rides for days.

It happens when I'm driving a car on the highway.

On a boat.

On a train.

This is getting very Dr. Seuss isn't it. On a boat with a goat. I don't want green eggs and ham Sam I am.

I'm wondering if I could set up a soundrack at night to match that Lurch to a Beat so that it wouldn't be so damned annoying... maybe then it would be sort of like in tune with the music and I could fall alseep? Or not.

Migraine dreaming

So when I have a full blown migraine, for days, and go to sleep, generally I'm not going to really sleep for long. It is a sporadic, interrupted sleep. But I do dream, and wake, and dream, and wake.

When I was working this led to a lot of sleep deprivation and sleep deprivation led to sleep paralysis episodes. Often when I had one sleep paralysis episode in the middle of the night it would lead to several. What would happen is I would wake up in the middle of the night, like every night, but I'd be 'stuck' between wake and sleep where your body is still unable to move but I would be conscious of the fact. It is freaky and I have talked about it before. I usually just shake myself awake... generally violently shake myself awake because when you are in this between state sometimes you have these sensations of dreams while awake. Like there is someone in the room. Like someone is staring at you. Like someone is grabbing you. Or squeezing you. Or phantom sensations. Freaky stuff. So you wake up, wake up. Then you shake it off and you go back to sleep. And usually it happens again. And over and over. Sometimes in between you get weird dreams that are just 'not right'. Where things feel wrong. Look wrong. Darker, shadowy. And you know you are dreaming and you know it just isn't right and you force yourself awake... and back into the sleep paralysis state apparently. It is one of the things I hate about sleep deprivation. It is not something I could do anything about. You just sort of have to function on little sleep, but little sleep does weird things over time. And maybe that is why I had those strange seizure things too because I have not had them since.  Point is lack of sleep causes migraines and weird dreams and weird sleep patterns.

Pain also causes weird dreams. Pain alone can affect your dreams in weird ways. Not always obviously. I dream frequently and most of them are actually rather odd and mystery orientated adventure stories. I very rarely dream about actual people I know or my actual reality and when i do i find that rather fascinating in itself. Lately I've been remember a whack load of dreams because I have not been consistently sleeping for any length of time. And a lot of them have been lucid dreams because I've been waking and going back into sleep in such rapid cycles I'm still aware really that I'm dreaming...and still able to maintain the same dream and storyline. I actually don't like lucid dreaming. I prefer to let my wild unconsciousness do its own thing rather than let my conscious mind muck it up. Migraine pain dreams are distinct though because they are violent in some way. Or very vivid. Or very weird. You really do remember a migraine dream one way or another. Just because of the stark vivid nature of them but sometimes because they can be so dang distorted and weird or disturbing and violent. Pain makes you think about bleeding usually so usually they are violent dreams... like you actually get injured or some such thing, or you are really ill. I had one where I was bleeding out of my eyes and my skin was like wax... disturbing but reflecting the pain I was actually feeling.

Last night sometime near the morning, so I was more aware likely of my pain level I was already in the middle of some action adventure dream (I'm telling you it's a regular theme with me... and sometimes I have super powers... what can I say? I read a lot)... anyway, I and some other dude I was with were secret agents and at this point we got captured by the bad dudes and tossed in a cell. In the cell was this chick. She said they tortured people by intense sound vibrations that you could not hear but were so intense the vibrations would cause massive pain through your body and primarily your head (yeah, migraine). But that she had smuggled in a device designed to counteract it. It honestly looked like an iPod, but one that had the pointy bit to be stuck in the base of your neck. She said when you turned it on it would emit a frequency that would be equally intense but would block the one they were pulsing out so that you would not feel nearly as much pain. And seriously using a signal to block a pain signal is actually pretty accurate. And the device sort of reminded me of the sort of migraine treatments I have seen where they implant devices into people. So that might be why I was dreaming of that. So she had herself all plugged in but we didn't. All I remember then is this noise and hum... like the constant ringing in my ears but so painful. The dude I was with had blood coming out of his ears and was just screaming. My head felt like it was being squeezed. The sound waves distorted the air around us like heat waves. I could feel it in my bones.

Then I realized my head really did feel like that. And I was awake and damn did my head hurt.

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