Lack of sleep, sleep deprivation and sleep paralysis

I was just talking about this and then I saw this picture! I actually have not had an episode of sleep paralysis since I have been off work because it seems to be related directly to sleep deprivation and I have not been sleep deprived obviously. I didn't sleep well at all last night, but my sleep cycle is erratic, I notice my persistent migraine aura is extremely vivid with little sleep, which explains why it is so intense when i am working. lack of sleep is a huge migraine trigger and it can cause a huge amount of issues.

I mean I  have serious sleeping problems and when I work even with a sleeping pill (which is rather sad) I don't fall asleep until hours after I go to bet and I wake up frequently, but it is worse without the sleeping pill. That is not what causes the sleep paralysis though it is when the migraines go nuts and I get those never-ending status migraines that make the sleeping pill useless... such that I get maybe a few hours or no sleep, and still go to work and after a few days of that or more... or a bad month... you get the point. It adds up. Then I start getting it.

I used to get it when I was in my early twenties before I was on a sleeping pill and it became a regular occurrence, along with violent hypnotic jerks... and horrific morning migraines. Then i was put on the sleeping pill and that really calmed it down, but then the migraines went from chronic to daily and the status migraines made the crappy sleep basically to nonexistent. So they came back, but far worse.

When i first got them they were just getting 'stuck'. And always in the morning. I would wake up 'stuck'. And the first time let me tell you I Freaked out. I had No idea what it was. You do not want to wake up stuck in your body but completely awake and unable to speak, it beyond horrific. It took about fifteen minutes of this internal struggle that caused no movement before my pinkie finger began to move then I was... just released. I figured out what it was and then it was not so bad after that... I would just focus on my hand and just try to get it to move and wait it out, but still disturbing. But as I said as time went on, the things like the hypnotic jerks began to add in and I began to have a hard time just getting to sleep. I already had a hard time getting to sleep obviously, but then just when i was about to fall asleep I would violent jerk in the jaw, neck, leg, back... any muscle group and be wide awake all over again. And the sleep a paralysis began to happen in the middle of the night... it was getting pretty bad. My sleep was getting very disrupted as well as it usual unrefreshed state.

Zopliclone helped a great deal. I don't get eight hours by any means. I'm still very surprised people can take half a pill and get knocked out for eight hours on it... seriously... very surprised. I don't know if it is the nature of my sleeping disorder or the pain, but that has never been the case for me. I do get a good five hours, not solid, but still... a good five hours out of it. Granted that has never been sufficient so I have always still be not great on the sleep, but better than nothing. When the migraines went to daily, that is when it became insufficient. Just can't beat pain. Still decent for morning migraines most days, which is good. Just when the migraine pain is acute enough at night... no sleep... which means obviously I wake up with the migraine still, if I get to sleep at all.

The sleep paralysis got Weird. I never had dreams with the sleep paralysis before. I knew what it was because I had researched it, but doesn't matter it is serious some messed up stuff. Like a waking nightmare that you are frozen into. So you 'wake' up into your sleep paralysis state, which sometimes you don't realize right away because it just feels like you have woken up in your sleep. You may feel like there is someone in the room. There staring at you. Sort of in a hostile, dark presence sort of way and then feel the stuck feeling... then go 'oh its sleep paralysis'... that is the mildest version. I have felt someone grabbing my legs, felt someone try to pull me off the bed. Felt someone touch my face. Felt someone grab my hand. Worse... is feeling someone hug me from behind, think it is my spouse, then feel them squeeze, realize 'ohmygodohmygd not my spouse not my spouse' and try to move and free myself, can't and that is freaky. And because they repeat all night long as in you jerk awake, slowly obviously because you have to work to free yourself from the state and then get back to sleep... you end up back into this state again... sometimes several times a night... so the absolute worst are the ones that get twisted into nightmarish dreams... these dark, wrong feeling dreams. They are lucid like because they feel wrong almost immediately and they are very dark wrong, I then realize this is Not real something usually is disturbing about them, then back into the sleep paralysis which can have some of the same elements in it... very twisted.

It is such a weird thing. I get why people can attribute so many strange paranormal phenomenon to it... because it seems so vivid and real and you seem so alert... but that state between awake and asleep can cause a lot of strange things to occur, I know that for sure and that is when the hypnotic jerks and other things happen, and sleep paralysis is actually not even that... you are actually still asleep really.

Lightning a migraine trigger? Hmmm

This is an interesting little study on the correlating between lightning and migraines. Intriguing.

"After controlling for other aspects of the thunderstorms that could cause headaches – such as temperature, barometric pressure, wind, humidity and rain – they linked lightning to a 13 percent jump in the likelihood of an attack.
Though the study can't prove that lightning actually triggered the migraine headaches, there are multiple ways in which it theoretically could, Martin said.
When lightning hits the ground, it creates low-frequency electromagnetic waves that induce a magnetic field, which could change the electrical signals in the brain, he said. Lightning also increases the number of positively charged ions in the air. And the electrical strikes also increase the concentration of the irritant ozone in the air.
Freitag said that though it may sound far-fetched, thunderstorms, via changes in the air's ionic charge, could trigger migraines.
For instance, research has shown barometric pressure can change concentrations in the air, which, in turn, can cause the release of the brain chemical serotonin, Freitag told LiveScience. Serotonin release can cause pain, he said.
But migraine frequency isn't constant, so the research team would need to study a geographic region that's broader, and for more time, to really pin down the link between headaches and lightning, Freitag said."LiveScience-Does Lightning Cause Migraines?

Certainly in the spring we get a lot of spring thunderstorms that roll in quickly and with them roll in the migraines, but I always assumed it was because of the fact the storm came on so quickly... but who knows maybe it was because of the fantastic light show. Interesting weather trigger if it is true.

Fibromyalgia and chronic pain in danger of being labeled a mental disorder

Fibromyalgia and chronic pain in danger of being labeled a mental disorder 

This is an article about the addition of Somatic Symptom Disorder (SSD) to the Statistical Manual of Mental Disorders (DSM) and how the vagueness of its definition could potentially lead to misdiagnosis of individuals with fibromyalgia or any invisible disability. This risk is there... that is not to say it will happen. It is simply that when it comes to Fibromyalgia we are aware that it certainly happened in the past and having this option available opens the possibility again. There was in the past with doctors this huge stigma with FM because some simply didn't believe it existed so when you came to them with all these miscellaneous symptoms they would think you were just a chronic complainer, or stressed, or depressed or that it was 'all in your head'. In was all too common for it to take over a decade for people to be diagnosed... I'll raise my hand here. And in my case I had a good childhood doctor, but I ran into a few dumbass ones on University... one said I was chronically depressed and another at an ER visit said he simply didn't believe in FM (this was after my actual diagnosis).  Point is we know when we run into this stigma we will not get treatment at all most of the time for whatever physical symptoms we have... because the doctor has already decided we are exaggerating or put us in a 'mentally ill' box. This is a dangerous stigma to have because if a person is having problems coping with their pain and disability they are not exactly going to open up to their doctor if in the past they have been treated this way... because they will believe the doctor will go 'Ah ha... you are depressed and therefore must not have fibromyalgia at all!'. And not seeking help for comorbid mental disorders is dangerous. 

However, there is less of a stigma today than there was. Or so I have been told. I have been told I talk to my doctor about chronic migraines like I have expectations of my previous history with doctors in the past. In other words... I tend to ignore symptoms until they get bad enough to mention, and if they are not bad, I don't mention them... don't want to complain after all. And I tend to be stoic about pain for the same reason which means my doctor never gets how much pain I am in. It's a no win situation... because doctors have trained me to react to them the way I have and by reacting the way I do they never will understand exactly how I am or all the symptoms I have even. There can never be a really good relationship there. Which I am attempting to change. However, those are my issues. Fact is, the stigma is less than it was. And most doctors and psychologists acknowledge the roll of a chronic pain condition on mental health as well as the potential for comorbid mental health conditions. My psychologist definitely acknowledges the role of my physical condition on my mental and emotional wellbeing... she would not be the sort to say it was the other way around.

Anyway, the history is there so we remember the misdiagnosis and being brushed off. So the potential so there... for all invisible disabilities. It is in fact why I loathed the label 'depressed'. But this one... far worse in its potential for damage. At least with depression no matter how a doctor tried to stuff you in that box eventually your symptoms would not fit there. It does not seem that way with this... not that I know how stress can manifest physically mind you, but FM has a lot of symptoms and in the beginning a lot of them would seem like manifestations of stress wouldn't they? And imagine how long you would go without diagnosis before all those other symptoms began to crop up.

The Hermit left the cave

I have delayed some tasks... quite a bit because of a long enduring status migraine. So I went out and about today. Mostly because today I got very little sleep which meant I was very alert very early and since it is a status migraine... the pain was already there. A very constant persistent pain, but less than it was yesterday. So I figured got to get this crap done, might as well get it over with. Essentially I needed to get to my doctors office to get him to check a box on a form he neglected to check so i can get my triptan covered by my drug coverage, then go to the pharmacy to get some triptans which obviously is currently out of pocket but in serious need of them and then go to the bank to get them to re-submit a form the faxed wrong for divisibility coverage (the form had print on both sides of the page, they faxed one side... thus the company only got half). That is a lot of important crap, especially the forms... which granted should have been done right the first time but every insurance form I touch lately has been screwed up, some several times, none of which by me.

And I got that all done. I felt very productive before leaving the house due to being so awake so early and finally having the pain go down a bit. But leaving the house inevitably means that will not last. By the time I got to the bank which was my last stop, I was feeling the pain increase, some vertigo and some disturbing auras. Which meant I was having some troubles with focusing. A status migraine is acute pain, so it's not like I started off in a good place... but when you have things delayed for so long and things need to get done and you bloody well need a triptan to hopefully manage the situation, sort of taking advantage of a lull. But when the pain increased, it when from intense, sharp pain to very intense, sharp motion sensitive pain with more vertigo and aura crap going on than I had when i woke up. That's from sunlight and motion really. Long story short... I ran one stop sign, fortunately in a low traffic area which meant there were no other cars around, and I had some serious parking issues at the bank that once I got parked had me shaking and realizing I had best get home as soon as possible. Crowded parking lots... just not good, made my vision all claustrophobic- like everything was way to close and too big. There was only one spot and it was either take it or back out, and no way I could reverse out (I just knew I could not actually reverse straight out) so I had to take it, but it looked way too small, so I crept into it and it looked like I was too close on both sides so had to keep adjusting and adjusting. So I was shaky by the time I settled into the spot. When I got out to look though, I had the space. Just did not feel like it. Which made sense because as soon as I tried walking my balance was just not there and my vision kept doing that tilting thing. Thankfully I was in and out. And thankfully getting out of the parking spot was easier. But I'll tell you I drove extremely slow back home. And people wonder why I don't want to drive. On bad days obviously I know my vision is compromised or the pain is too intense. But I can never predict when the vertigo will be triggered by the motion of the vehicle or when the aura will get warpy-er or when the pain will get just too intense... when I am already out driving. I only know when it is already bad. And I know the triggers. And I know apparently my doctor does not think they are all that bothersome... which I found out as I stood in the back actually reading the disability form and the tasks he thought I could and could not do. Mood being the one thing he now thinks is an issue... but other things he simply does not acknowledge. I seriously want to give that guy some migraines with aura and vertigo for a month. Really, really do. Moot point since I am changing doctors but I seriously want to give that man a piece of my mind before I do.

Anyway, got home... migraine went nuts. Took my triptan. As you know, status migraine, already acute... did not do much, but did a little bit for a little while. Now it is crazy intense again. And the aura is crazy intense as well. For some reason the halo vision in my right eye is nuts. Which makes all light look crazy... but not the computer screen with the way I have that program on it that changes the light and the Irlens filter on top of that. Any other light in the house though... big shiny halo on it.

New Year Worries and Family

I had my first appointment of the New Year with my shrink after the holidays. It was sort of amusing because I felt like crap but she thought I looked pretty good. It was one of those migraines that fools a lot of people into thinking I'm doing pretty good. I was in the beginning stages of it and so the pain had yet to peak and I was getting out of the groggy and going right into nervous, edgy, chatty, energized, shaky. One of Those migraines. The opposite of... dopey, dull, and depressed. It can confuse a shrink into thinking I am in a good mood because I am sort of... in a hypomanic mood in fact. Nothing wrong with that because I do feel good during that stage and I can think clearly and I am usually quite articulate and creative. Better than being a depressed idiot. But it threw her because she was asking then for what sort of things had improved my mood. And in fact I have been rather anxious about my Long Term disability... because my short term has just ended and I have not heard a damn thing from my insurance company by phone, letter or email. I have tried to get a hold of the short term people but the chick is on holidays and left no number for the person handling her crap. So I called the insurance people and I got a hold of them but the person I talked to said she could not access the information because she was in the wrong time zone so I had to call back the next day at a different number and a different time, so I did but missed them and left my number... and point is I have no clue what the status is. I left a message with my employer about the fact I have no clue about the status, which has to suck for them because they don't know if I am coming or going so whether they can hire someone to hold that position or whether I am coming back. So... yeah, a little freaking stressed. I'm not ready to return to work, but at the same time, I'll have no choice if I am declined, so that is what the shrink is for in the first place, to help me deal with the harsh emotional realities of dealing with all the acute pain in situations I cannot control, and how to control the suffering that causes. I need someone to help with the fallout. And if I go on long term, she can help with strategies to get me functional. Along with the pain clinic.

We also talked about the holidays and how I coped with that. I had felt insanely tired in quite a bit of pain really. But the holidays always are that way for some reason. And I explained my weird ass back pain situation made it difficult to get around and get shopping done. We discussed how a chiropractor with my condition might not be a good option. I was considering it, but maybe she is right... a lot more pain with FM would linger quite some time. So I guess I will wait and see what that new doctor thinks. It really is compromising my mobility... just for walking any distances. I'm fine at home.

But I said I always enjoy the holidays. I always have and I always will because I love spending time with my family. Christmas is my favorite time of year because of it. It may be that my family does not get together as often as we should and this year I was not able to see my younger brothers, my younger brothers girl friend and my younger brothers mother at actual Christmas like I wanted to this year because I was feeling so cruddy... but I did in the New Year. I sometimes feel like my health inhibits a relationship I could have with them. And even with my older brother and his girlfriend, because I simply do not have the energy to go out and do things or drink or hang out. I feel like those connections would all be stronger if I was able to just get in my car and go meet up with family members somewhere for lunch or something one in awhile to catch up or hang out. So I think that is what makes the holidays so vital for me. I don't even care how I feel at the time. I could have a wicked migraine and I don't miss it. I just love seeing them. Just love being around them. And it makes me feel good. She knows I go out with my mom for coffee or book shopping and said maybe we should do more of that... just to get out of the house and socialize, because that obviously makes me feel connected and good. I agree. I just need to make more excuses to do so. Mom is retired and has time and I have time (potentially) so I think I will think of something. A person can depend on family I guess in a way on cannot depend on friends.. friends give up on you eventually when you cannot meet up with them, cannot go to planned events, eventually they drift away, which is normal... but being introverted it has never bothered me much. I just said to the shrink that while losing people to this illness has never bothered me, when I am not working I get no social interaction, no work friends, and I am prone to becoming a complete recluse... which also doesn't bother me... but is not healthy. To not do that I have to literally find excuses to leave the house and interact with the real world, but my spouse does not want me driving, so rather tricky to do. - Visual Snow: it's like having a sort of TV static in your field of vision all the time.

Here is a link to a recent news blurb about visual snow in the - Visual Snow: it's like having a sort of TV static in your field of vision all the time. First time I have ever heard it being discussed in the media and so I think it is great for spreading awareness. For me this is part of my persistent migraine aura... hard really to say how much of it is vs and how much is other aura symptoms because vs has more than a few symptoms associated with it of which I have as part of my aura along with the actual snowy, staticy vision. I can say I find it weird and fasintating because I have had visual snow for a very long time, long before my migraines were even diagnosed or at all frequent... so weird to say that I had a persistent migtaine aura that long, yet some of my migraine auras are not associated with vs so I must have. Maybe I had silent migraines. Maybe it had something to do with the whole alice in wonderland symptoms I had. Whatever the case may be the persistent migraine phenomena is in itself hard to explain and visual snow even harder. Neither respond well to treatment, but vs even less so, which means practically not at all so it seems while there are similarities they do not respond the same way to the same treatments. Same area of the brain... it is speculated, but can we say it is the same cause? I doubt it. Aura, persistent or not, fluctuate a lot. I may have a variety of the damned things but they vary day to day and intensity and duration and color and a great deal of factors... including of course an actual migraine which does in fact cause the usual aura before a migraine (which may or may not be visual). And while it may be puzzling as to why auras persist for so long, we do know why auras occur and the process involved. Visual snow... no one has a clue, but it is constant. There is no off switch to it. Some of the other symptoms may vary, and I suspect are associated with various triggers to the condition... but the vs itself is a continous visual phenomena. It can get worse, most definately it can get worse... thick, clumpy and pulsing and flickering seem to be add ons... and it can be less intrusive. Night time makes it worse. Lack of sleep makes it worse. But mild or severe it is always there, so not like an aura in that sense. Maybe that is why preventaive medications do not seem to suppress it as well... at best making it less severe. I think at times those medications simply reduce the things that make it worse, thereby making it appear less vivid... but if that works then it works.

Whatever the case may be, I know as part of my auras it can mess things up quite a bit. Like a layer to a layer to a layer. My vision simply gets too distorted and warped. Some people say 'just ignore it' and to some extent I agree. I don't stress out about it, but at the same time, I would not let me drive either... but then doctors don't 'see' it the same way and have never had concerns about my driving with constant migraines, vertigo and all these weird auras. When i don't work I choose not to drive, when I work I cannot choose unless they choose for me which they don't. So it is a bit of a problem that others don't take it so seriously, even those that should. I mean, sure I don't get worked up about it, but I acknowledge the fact that my visual acuity is comprmamised in such a way that glasses cannot fix it. Such that if someone is standing across the room I cannot see their features... just this warping sparkling, staticly splotch. No big deal, I know they are there... it is kind of like being near-sighted and not wearing your glasses I guess, but with a lot of extra Movement going on. Obviously, my migraine auras make my vs more warpy and distorted. But some days are not so bad. During the day can be quite a bit better vs snow wise but worse on the persistent aura side and quite a bit worse light sensititvity wise.

And some people have vs without migraines at all... the very fact this condition exists seperate from migraines altogether suggests some sort of different mechanism than a migraine aura to me. So I am very interested in the new research. I get there must be a connection between migraines and vs, but migraines affect a great deal of the brain so that connection could be quite a bit different than historically thought. I also think it is very intersting to note that some migraine people with vs do not actually have migraine with aura... as in they do not have any other visual or other aura phase of the migraine, but they have vs.

If you have visual snow here is an awesome group on Facebook for information or support... which was mentioned during the news article.
Visual snow Facebook Page

Scintillating scotoma Migraine Auras (playlist)

Here are some good videos and a gif on what scinntilating scotoma auras look like... the most common migraine aura by far. Generally when someone refers to a migraine aura they commonly think of this one, which is why you see videos and pictures depicting it all the time. When I first starting getting migraine with aura this was my primary migraine aura symptom, which by the way is a great early migraine warning system. Pretty spectacular as well. As you notice with the depictions here some show it in a clear color and some show it with milti-color and that is because it can be either. But the band of 'sparkles' is the scintillations and the scotoma is the blind spot that follows after. So it becomes this sort of flowing wave of expanding sparkles with a blind spot that follows in its wake... starting small in the beginning and getting bigger and begger until it takes up all of your vision. And then the migraine. And then it is over. If you do not have the blind spot and just this band of sparkles then it is just scintillations which is also possible... which is why I refer to my 'scintillations' and not this. And this does not follow the same pattern at all... it is more like a warping, waving arch of multi-colored sparkles in my entire upper field of vision. But then they do take different patterns and I do know of all my migraine auras this is the only one that has ever been effected by medication... ever. I mean without any preventative it is pretty intense, some prentatives stopped them altogether and right now I get those thick band of scintillations but with black blind spots at the edges... so who the hell knows. So it could still be the same thing just different, since it seems people see it differently and I guess when I initally got it with no medication it was prettly severe... but granted all my auras are pretty intense. I honestly do not get why this specific one responds to treatment though, including the fact it comes prior to a migraine like a normal aura and goes away with a triptan but my persistent migraine auras certainly do not. Also scintillations by themselves are possible without a migraine... just as a peristent migraine aura. When i get that it tends to be a warping white arch like that GIF. Or a sharp cirle of shooting sparkles in the core of my vision. So there you go... a lesson in scintillations.

Regulating sleep

Sleep and fibromyalgia just do not get along. When I am working I'm constantly sleep deprived and that is with a sleeping pill. It makes it such that when I get a status migraine and the pain becomes really intense and just constantly mind blowing I don't sleep at all, which then makes it hell to work, which then makes the migraine last longer and makes me very emotionally strained and just drained. I try to play catch up on the weekends which never works. And I get these horrible episodes of sleep praralysis from the sleep deprivation which repeat over and over during the night, which in essence make it very hard to get any sleep, making the sleep deprivation worse. It is insanely hard to get any actually quality sleep. But I manage to get a little because of the sleeping pills, when the migraines are not completely acute when I go to bed anyway.

When I am off I get more sleep obviously because I can... but I get it because I get it when I actually am tired, which is not apparently when I would be forced to try and sleep during a normal day job. Because that is so not when I am tired. So. Not. I get tired around 4 am. So that is when I have been falling alseep. I have been trying and trying to regulate the time I go to sleep, but if I do... then I end up with the same problem, I don't fall alseep according to the proper time table. And if I try to regulate it for 8 hours like... go to bed at 12 get up at 8, then I will fall asleep at 4 and get around four hours of mediocre sleep. And definately not want to get up.

So when I got really sick from the medication change and my sleep cycle went to hell I just started going to bed at 4am and trying to get up at noon, just to get some solid sleep. But here is the thing... that sort of works in an ideal sleep cycle sort of way. But my brain does not work that way. I think my brain works in a old fashioned ten hour sleep cycle way. Maybe because of that theory that people with FM actually have an energy shortage or maybe just because we have such poor quality sleep such that eight hours isn't really eight hours. All I know is that ten hours feels pretty good. And consistent. My brain automatically wakes me up without an alarm at ten hours but I snooze the hell out of an alarm until ten hours comes up with it. Yet I feel guilty like I am wasting the day or something. And sleeping till 2pm just does not feel right. If only I could Get to sleep Earlier. But I have not figured out how yet. It is my aim in the months to come, hour by hour.

Another problem is consistency. So maybe ten hours is what I need. Maybe that feels good. I would prefer nine as a compramise but whatever. Unfortunately, I do not just sleep ten every day. No. Apparently my brain figures I have had enough and then just decides not to have any and then I can't sleep At All. And I will be awake at 8am and just give the hell up only to need a three hour nap at 2pm because I have a killer migraine from not freaking sleeping. Or sporadically I'll just get two hours or four hours like I would if I were working... just that I can't get comfortable, I'm in too much pain, or I just can't stay alsleep. Granted the ten hours of sleep is not exactly great sleep either, which is why it is likely ten hours... the first part is not restful at all, the middle I often wake up several times and the last two hours are mostly groggy wakefullness where I'm just not really ready to get up.

I have not figured out if I want to go to bed earlier or try to just force myself into an 8 hour sleep cycle. Not sure which would be better or more 'normal'. Or both.

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...