Too tired to even be frustrated

I emailed my new neuro about my unpleasant topamax side effects and got a rather brief response. Granted the reason I emailed him was because his office said he was busy, still... the response was a bit frustrating, lacking and a tad depressing. I mean since I have seen him I have not seen improvement, I have gotten worse due to side effects and of course the lack of a rescue med has not exactly helped the situation. And then there is the whole vertigo getting worse on me as well. So with the side effects being very unpleasant it has been no freaking walk in the park for me.

I guess I expected some sort of definitive plan B. After all there are preventatives I have not tried. I know of them. I have heard of them. They Exist. Go ahead and name a few and I'll jump on one. Any of them. I'm freaking desperate here. He just said given my 'lack of response to meds' (notice the plural there, as though commenting on all my history with meds as if I have conquered them all and there are no more to take) he says he hopes I have taken his advice to stop smoking, exercise, stop drinking pop and stop using painkillers. Those would be the important lifestyle changes. Obviously the exercising I was doing stopped... due to getting progressively more ill, more pain and the increasing vertigo. So I have to try and start that again somehow. I stopped the caffeine, but when I have a migraine I do still have one cup a day sometimes... hoping it might actually help. I stopped the painkillers, which obviously I was not using much of and obviously has not helped, but the remainder of my script I have saved for my horrific hormonal migraines because that pain is not the sort of pain I can tolerate beyond three or for days without becoming desperate for at least a few hours of deceased pain levels. I have not stopped smoking, I was waiting to feel a little better to go for that... and when i felt significantly worse well I just did not want to then... it is a stress relieving, when you can do nothing for the pain I smoke. I might try decreasing just for the hell of it, not like the pain is going anywhere at this point. Anyway with the pain as high and constant as it is I don't think he realizes that all these changes, like the exercise, are literally torture... how can that help? And lifestyle changes are not things you just do overnight anyway. You need to do them in steps especially when you are in a crapload of pain. Give me a god-damned break already. And I was doing quite well thank you very much until side effect hell screwed it all up. I had a routine going on. Sure it was insignificant in his eyes, but it was major in mine. Shot to hell.

I'm not sure why he did not mention another preventative medication. Or that we should discuss options? Or something? With chronic migraines it is insane that I would not be on one. And the thought that there is no option for one is not a good one. I know that isn't right also so why do I keep getting neuros who say that? Unless for some reason those medications I know about I cannot take for some reason I am not aware of. Anyway, I'm in a boatload of pain right now and I guess his lack of ideas is rather depressing to me. It shouldn't be but it is. It is not like the topamax was working, so nothing is going to be the same... but I just thought he would have other ideas. He did mention something called Gammacore but it looks like a nerve stimulation device or treatment which would be a great therapy along with a preventative treatment... but by itself I can't see it being all that extremely effective. Might help with all the extreme neck pain though. At least it isn't nothing nothing. 

Status migraine ended but now I'm in a funk





Finally after a little over a week my Status migraine, which was trigger from the hormonal migraine is finished. I should feel relieved and happy by the fact but today my mood seems to be rather down. I feel very melancholy really.

The pain was so acute and intense for that week long time. I only had my abortive and it did not work and so there was nothing left to do. I had to wait it out. It was horrific. I just wanted it to just End. I was useless all week. A wasted week. Time eaten by pain. Imagine my torment if I was working. I can lose a week to pain on a leave... it is horrific and sad, a waste, but if I were working I could not. It would be impossible. Usually I would touch out three days of a status migraine, then as I got sicker and weaker on the fourth day usually I would call in sick. But I could not again so I would have to go in for the next three... or more since work would likely make it worse and prolong the migraine itself. The torment of working like that? I remember that, but at least then I had some painkillers. Still not something I would wish on anyone.

My point being that long stretch of pain, unmanaged pain... was too much for anyone to have to endure. Way too intense and long. It makes you frantic and desperate for some relief but you get none. And you just have to wait and hope the next day will be better and it isn't. No one should have to endure that. But we do. Over and over. Losing days and weeks to this torment. Expected to. And then expected to function? To work? WTF. I had a hellish week. Just hellish.

Then today, finally, the status migraine ends and I go back to 'normal' with a migraine today at an 8. And I thought to myself this is my 'Better'. This is It. This is my normal migraine that should make me go Yay! An 8 is nothing to celebrate about either. It made me want to scream and rant and cry that this is my better. This is my freaking existence. Hell to hellish. And something maybe a crappy thrown in there. That status migraine was exhausting physically, mentally and emotionally. To endure that and afterwards to get This.... I just want a break for a moment. A rest. A gap in the pain. A vacation. Some down time. But there never is. And with just a few abortives a week... I guess I have to get used to just enduring the rest right? I think this mood is from the status migraine ending and the other one beginning... the flux of serotonin... but whatever. I'm moody. All day I've been in this funk.

I think I need an interpreter

Honestly, I feel like I forget more than I remember when I go talk to my doctor. And then hours later I'm always like Damnit! I forgot such and such Again! I need to have an interpretor. They should make an App for that. Partially it is just the fact I still have this status migraine... so a crapload of pain. Partially it is the topamax which is just not good for the brain memory. Paritally it is that I'm there for something specific and he has like I swear a two minute window for me... you simply cannot rush someone with fibro brain. You distract me for one minute and whatever else I thought I ought to mention goes out the window.

There is sort of a pile up of things I ought to mention. You ever wonder if one of those things that has been a been nagging symptom... the is likely just a 'fibromyalgia thing' might really be something you should bring up? I do sometimes. I'm not a hypochondriac or anything. I ought to be considering how many bloody comorbid conditions these people insist on diagnosing me with... but I figure FM covers a lot of ground, so I likely don't worry enough.

Pain is pain right?

How do you know when pain is a pain you should worry about when you have pain all the time? Most people are really fortunate that way. They feel pain that hurts a lot or persists and of course they go to the doctor. I have no freaking clue. Is it normal pain? Is it a flare up? Is it a side effect of a medication? When is it abnormal for me? That also was a concern with chest pains... was it chest wall pain, asthma lung pain, or angina pain, from the stomach... sort of had to learn where the pain was coming from and whether it was serious or not. The topamax side effect of chest pain... have not figured out yet. Abdomenal pain... tricky one, sometimes I can't figure that one out myself.

I've been having this back pain for a bit now. It was aggravated a lot by yoga and walking and nothing really. It just hurts. It hurts to just try and sleep. It is the sort of back pain where you feel fine bending forward but it is painful and difficult to stand straight or bend it backward. It is very tender in the lower back, but over a broad area if you were to poke around. It will get a lot worse, quicky, when I walk anywhere. Yoga was not helping. I assumed FM flare up from the yoga, but it did not lessen when I lessened the yoga... it has remained consistent. So I assumed one of those random and highly painful FM flare ups even though I have never had it in the back before. But what do I know about back pain? Nada. I know usually it should come from an injury. I know it should be better with rest, but I have real troubles sleeping with it. I know nothing has helped with it... not creams or back pain pills. I know that I get tingling and numbness in my hands and feet... but that is hardly unusual is it for migraines and FM, or even a side effect of topamax. In the scheme of FM... its pain and I immediately put it in that category. But reflecting on it, back pain can rather be specific so I thought I should at least get it looked at. But I forgot. Of course.

Then there are the Other symptoms. There are just too many of them. Some seem so minor as to not even worry over. Like my sudden allergy to shampoo. Weird, but not something I mentioned. Would a normal person mention something like that? I don't even know. It seems so minor. Then there are the major things that I have put up with for so long and have mentioned to him several times... but I guess he does not take me seriously enough. Like IBS-D. That really is serious to me. I mean I am really beginning to hate food... and I try to take vitamins, but apparently I can't digest them... and every medication seems to upset my digestive system. He seems to focus on the nausea and stomach pain, which is minor compared to the fact that nothing stays in me long enough to actually be digested properly. This really is getting bad. I keep trying diet changes and all sorts of things because all the things he does make it worse.

Point is I never seem too get these things in. They are imporant... obviously they are. Eventually I will remember. Then he will ask how long the back pain has been going on and I will be like... um, I have no idea. All the small minor things... never get brought up. And who knows what is missed there right? Major things I will eventually specifically make an appointment for when I go for refills. One at a time. But I can't help but feel that the FM is a little... not dealt with. Maybe these digestive issues have been ignored for too long. Hard for medications, vitamins, nutrients... anything to get in me if my digestive system is this out of whack... and how can I get a crip on the migraines if that is the case? I get doctors are intimidated by FM as in the Whole picture... but this part of the picture is what makes me so ill when I get these status migraines or have these side effects. And its not good.

Anyway... I have to find my phone and add some reminders into it... its the only bloody way I can remember these things.


Status migraine mode




Okay... I'm stuck in a status migraine. Not unusual for hormonally triggered migraines. They start with that constant trigger for a few day of acute constant pain that does not respond well to my triptan so I used to treat with my painkiller, but my neuro took me off that... and if treated aggressively in the beginning these migraines at best last three to four days. They are hellish and violent in their symptoms and as such you can get dehydrated and sick quickly if you are not on top of things... compounding triggers can lead to... more you guessed it prolonged days of migraine pain. At worst... well they have lasted for a very long time... I've ended up in the ER, not that its helped, but desperate times and all. Actually, it did help three times I believe... luck of the draw with doctors there.

Point being... if the acute pain persists and you get stuck Beyond the initial hormonal flux... then Status migraine it is. Hello status migraine. Not much I can do about it. I could try another triptan tonight since I did not take one yesterday. Might as well at this point. If I'm desperate and don't mind some more stomach pain and discomfort I could try a toradol shot tomorrow... thats always fun. I'm damn miserable, might be worth it. I can't control the pain. The vertigo. The nausea. It's horrific. Its been way too many days.

Thats the difference between a status migraine and chronic migraines by the way. Chronic migraines can be every day... as mine are. But the pain can vary from 4 to 10 and they can start in the morning, afternoon or evening... so you might have half a day with just a pre-migraine but no pain yet. Or it might be a slow onset where it is a four most of the day with nausea and vertigo that is nuts but the pain is really manageable and it doesn't get to say a seven until evening. Or it could be acute onset in the afternoon, but the morning was fine. Or all day sucked. Or it could be two days that sucked. You never know. But a status migraine is three or more days of acute constant migraine hell. It is an acute migraine that just keeps going and going and going.And you just get sicker and sicker. And the pain is maddening.

Do you have any idea how you feel if an acute migraine lasts two days?
Three days?
Fours days?
Five days?
Six freaking days?

This does not happen to me every month, but the potential is there. because when I work with migraines that means I work with those hormonal migraines, which means I work during that acute hell and I aggravate it... so usually it does last about five days on average... and sometimes seven. Sometimes in the past even longer when I had no rescue med, like now. I sure as hell hope that isn't the case this time. So every month I had to endure this over and over again. Is it any wonder I developed a problem sleeping through the pain?

They truly are killer migraines... one because they could potentially kill you and if they don't you wish they did.

The Cerebral Cortex - Dr. Todd Schwedt

Fasintating article...by Nancy Bonk on Health Central
"Another study used a white moving dot pattern on a black background to visually stimulate the subjects, showing the Migraine group had a stronger activation in the middle temporal complex (motion sensitive region) compared to the non-Migraine group. These studies support the idea that Migraineurs have enhanced reaction to light and motion stimuli in addition to having thicker cortex in the visual motion processing centers of the brain compared to non-Migraineurs."
Yep... that relation I can understand since I am really hyper sensative to both light and motion. Both of which persistent beyond the migraine but are obviously worse with one.
"Dr. Schwedt rounded out his session discussing how a Migraineur "co-processes" different stimuli and that Migraine itself is multisensory integration that has "gone wrong." He went on to explain what multisensory integration is:
"sensory-specific brain responses and perceptual judgments of incoming sensory stimuli which concern one sense may be modulated by relations with other senses."

This means, our brains can take in many sensory stimuli (visual, olfactory, auditory and somatosensory) at the same time and process them simultaneously - we don't process one type of stimuli at a time. He thinks this is important because Migraineurs with osmophobia seem to have a higher attack frequency and are found to be photophobic. If Migraineurs are hypersensitive to light they may also be sensitive to odors and have a hyper reactive trigeminal system. One study that measured pain thresholds in a group of Migraineurs who were not experiencing a Migraine and were exposed to bright light, became more sensitive after exposure when their pain thresholds were re-measured. This did not happen in the control group."

Again, isn't that interesting to note? How the stimlus gets tangled up? Makes a lot of sense doesn't it? Certainly it seems that our senses are hyper aware during a migraine. That super sense of smell, photophobia, super hearing... too much of everything. And I am definately photophobic and have been for decades. And odors... but that is an FM thing too.

You spin me right round, baby. Right round like a record, baby. Right round, round, round


Yep, I'm in the Migraine Zone and it is day four of killer migraines... as usual the symptoms with my migraines are more intense. Yesterday I had profound vertigo. I did not notice it was worse than normal until I was in the kitchen and turned to leave and almost fell on my ass... just turning around and the whole room just whirled around me and I staggered and fell into the fridge. The pain at an 8 t as well so I had not been paying much attention to anything else really but after that little incident I was much more careful on how I moved. Had to walk with a hand against the wall and be careful when I got up and when I sat down. That night of course my head was still internally spinning so I had a hard time falling asleep... plus the topamax has given me a sore throat, a cold and breathing issues so I ending up getting up in the middle of the night to taking a cough drop and my puffer. Big mistake. I got up, staggered a bit, hit the wall. My bf heard me at that point and then I fell into the end of the bed and hit his foot and he said to come back to bed, but seriously my throat was killing me from laying down so long. So I tried to walk forward again and really fell into the bed. And my bf was then insisting I get back into bed, but I was like no I'm all good... thats what walls are for, right? I got my cough drop and puffer. Amazingly. But the thing is that at times like this with a killer migraine making things wonky... I also had severe visual trailers so every time I looked somewhere light the light image would repeat vividly. I hate when that happens. I also had a pulsing aura. And the pain was severe so I really just wanted to get some sleep.

I finally did get to sleep but the vertigo has continued today. I woke up with horrible nausea which isn't surprising when you think about the feeling of this falling motion and spinning. It is just amazing I managed to eat. Unfortunately this evening I thought in addition to the soup I managed earlier I would have some cereal.... and when I was carrying the bowel back into the kitchen with milk in the bottom... well I was all spiny and I sort of fell to my knees and spilled it All over the place. *sigh* That's what I get for not following the wall with my hand. so now here I sit... regretting eating that cereal in the first place, with this constant spinning in my head.... wondering how I am going to get to sleep tonight with this again.

RE: Excedrin Migraine Campaign Trivializes Migraine & the Women Who Experience it

Excedrin Migraine Campaign Trivializes Migraine & the Women Who Experience it


"Two-thirds of women would give up shopping at their favorite store for a year to stop their migraine attacks. Excedrin Migraine has launched an advertising campaign with this so-called fact. Seriously? The willingness to give up shopping at a single store exemplifies the impact of migraine a person’s life? Could they have trivialized migraine or women more?"


That seems like a very, very small sacrifice. I rarely shop ever and it is only when I have to. My favorite store is Chapters and I go about once a year. I get driven by someone else because I don't drive unless necessary and I spend about fifteen minutes there. So... fifteen minutes a year spent at a store I could buy books online instead... traded for no migraines forever? WOW Talk about NO sacrifice for a HUGE massive gain.  Where do I find that genie to grant that wish?   Well, i rarely shop because I'm not a clothes, purse or shoe person...also the experience is exhausting, draining and painful. So when I must it is short and to the point. Not a good example for me when leaving the house is an ordeal. We sometimes go to places because we don't want to be a recluse, and we want to socialize and pain avoidance behavior in the extreme leads to... never leaving the house. Yet, asking me if I would stop this one activity, which like everything in the outside bright world, moving about, causes me pain to do, and I do very infrequently anyway... to take away my migraines forever... the answer would be a 'hell ya'. I've done a whole lot more for way less gain. Shopping is one of those things you have to do on a Saturday... never a workday (that would be horrifically painful after work) and not a Sunday because if you aggravate a migraine on Sunday you could make Monday worse for work... but not a bad Saturday, has to be a good one and not the morning or evening and never for too long. These things take planning. And if you get any sort of chronic pain you get that. We get the consequences and the gain. This hypothetical minor sacrifice for an impossible huge gain is a cruel little mind game because we all know there is no cure so no point even thinking about what we would give up... but...
I would give up shopping at my favorite store forever. I would give up all shopping outside the house forever (ever heard of online... awesome  way to shop and no sunlight). Hell, I'd give up ever leaving the house. Again, no sacrifice... it is called pain avoidance. Shopping is not necessary, ergo, doesn't happen happen often... if happens when energy levels are high enough, pain is low enough, when I need to or when I am willing to suffer the consequences for the positive gain (socializing, not being a recluse, mood benefits). Leaving the house and sunlight are unfortunately necessary evils for chronic migraines... but hey, if you are going to take my migraines away I'll sacrifice them up for the rest of my life even though I'll have no pain left and no light sensitivity to hassle me.

I'd go into a coma for a year if it would diminish my migraines or cut them in half... that sounds like a good deal. It would be a sacrifice sure, plenty of good things I would miss, people I would miss, but what sort of life do I have right now with these constant migraines? So that would be well worth the sacrifice for less than a hundred percent gain. Granted... a coma sounds rather nice as well, no pain, no light, no sound... clearly I need some sleep. But you get my point.



Jeez... maybe they should ask us what we would be willing to sacrifice that we already have not.... not sure what that would be, but I'm sure there is something. I mean we do an insane amount of things and medications in hopes of slightly diminishing them... for them to be gone altogether? That is like some wild elusive fiction. I can't even imagine it.



As Kerrie states:


"Daily, migraineurs struggle against the misconception that migraine is “just a headache,” with families and employers who don’t believe or understand how ill they truly are. Advocates have begged Congress and theFDA to notice how debilitating and woefully underfunded this illness is. The last thing we need is an advertising campaign that diminishes the seriousness of migraine and the women who experience it.
The “fact” about shopping and migraine prickles another nerve by asking what someone would give up to eliminate migraines. For a year, I would live in a cave with no human contact, surviving on rats and cockroaches as my only food source. And, yes, I am completely serious, provided that I have fire to cook the rats. Unfortunately, migraine isn’t a game where you can choose your terms; treating it as one only increases the desperation and lack of control that someone this sick already feels."
The Daily Headache goes on to state some important facts....

Here are some real statistics from the World Health Organization:



Migraine-associated brain changes not related to impaired cognition

Migraine-associated brain changes not related to impaired cognition

Women with migraines did not appear to experience a decline in cognitive ability over time compared to those who didn’t have them, according to a nine-year follow up study funded by the National Institutes of Health.
The study also showed that women with migraine had a higher likelihood of having brain changes that appeared as bright spots on magnetic resonance imaging (MRI), a type of imaging commonly used to evaluate tissues of the body
The findings, which appear in the Nov. 14th issue of the Journal of the American Medical Association, update observations from an investigation conducted in 2000 showing that women with migraines were more likely than age-matched controls to have scattered areas of white matter changes on MRI scans. That initial population-based study, known as the Cerebral Abnormalities in Migraine, an Epidemiological Risk Analysis (CAMERA-1), screened and evaluated 295 men and women with migraine and compared them with 140 age- and sex-matched controls. In that study, people who had more frequent migraines also had a higher incidence of changes seen on their MRIs, suggesting that migraine attacks could have a cumulative effect. 
In the current investigation, known as CAMERA-2, researchers sought to tease out differences between men and women, and to find out whether the type of migraine was associated with an increase in the volume of new white matter changes relative to that seen in the initial study. Researchers reassessed 286 of the original participants. Among them, 114 had migraine with aura, 89 had migraine without aura, and 83 were controls. Compared with baseline, women with migraines were twice as likely as those without such attacks to have an increase in the volume of diffuse white matter changes. However, this increase was still very small, said one of the study’s investigators, Lenore J. Launer, Ph.D., chief of the Neuroepidemiology Section at the National Institute on Aging (NIA).CAMERA-2 also showed no correlation between new brain lesions and migraine frequency. This finding may be due to the fact that structural changes to the brain arise not with each new migraine attack, but are the result of an ongoing process that occurs even during periods between attacks, Dr. Kruit said.
The study participants aged, making it difficult to tease out brain changes that are specifically attributable to migraine. That is because age, as well as hypertension and diabetes, are also known risk factors for white matter changes, Dr. Launer explained. Sixty percent of control females without migraine showed progression of white matter lesions as compared to 77 percent of those with migraine. 

Bizarre.  I have recently done articles on the brain structural changes caused by FM, which do cause symptoms. I can see how migraines over time could cause structural changes... but puzzling ones it seems.

Not going to make it to 400mg of Topamax,,,

No way no how. I'm too sick. Too many compounding side effects. I have put up with being a stupid zombie , well since I went over 100 mg. And then it just got worse. The fatigue got insane. Those two make it impossible to function. I wonder around all day doing nothing because I can't get anything done. Sometimes I just wander into a room and stand there like an idiot trying to figure out why I was in there. Or I am in the kitchen trying to muster up the energy to cook and I'm too tired to stand. I have been so sore and weak... I thought because of the weather but I think it is a side effect because it just has not stopped and the weakness is profound. The stomach pain has been a real hassle because it has been preventing me from falling asleep adding that to the diarrhea and it has been very unpleasant  but my doc just said to take my medication for my stomach but it really has not worked. So I have just tried to eat things that have been stomach friendly and lots of water but you can't fight these side effects. The chest pains, well, I'm honestly not sure what the hell that is about... honestly... I thought maybe chest wall pains. It is this sharp, aggravating, but not constant, more like a repeating rhythmic pulse. There has been shortness of breath and some wheezing so I have been taking my puffer...and I have had a cold and a sore throat which i guess are also symptoms, so that is just great. It has definitely affected my blood pressure which did confuse me, because I have low blood pressure and was taken off a calcium channel blocker and then by blood pressure dropped significantly... and I was like what the hell? That seemed backwards, but I guess that explains that. And I suppose the dizziness as well. And maybe even the coordination problems... although to some extent those are always there. I have been insanely itchy lately... insanely... and have even done all the things I do when my eczema flares, and picked up a grape seed extract to hopefully help with eczema because I have no idea how to stop it from itching... just everywhere. For no reason. I have no scratched. I use no chemicals. Just itchy. And the fact it is also affecting my sleep is driving me nuts... it is hard enough for me to sleep, then even harder when I have bad migraines, add in these complications with this med and my sleep is erratic.

So Enough already. I give up. I put up with a Lot of this crap thinking I would give it a decent go and maybe some of those side effects would diminish once I was topped up. Like the Stupids would go away. But some things I cannot ignore, like the stomach pain and the even worse diarrhea than normal and these absolute confusion, and pain, and weakness and more insomnia... give me a break already. I think this is potentially harmful at 300mg and I think 400mg might be dangerous for me. So I'm going back down and setting up a doctors appointment... assuming I remember to.

Dizziness
Fatigue
Drowsiness
Mental and physical slowing or delays
Coordination problems
Loss of appetite
Confusion
Difficulty with concentration or attention
diarrhea
Memory loss
Language or speech problems
insomnia
Abdominal pain (stomach pain)
Joint pain
Weakness
Indigestion
Hair loss
Chest pain
Difficulty breathing or shortness of breath
low blood pressure 
Itching (possible allergic reaction)
Wheezing (possible allergic reaction)

My migraine is not your migraine...

"I would like to emphasize something that is very true for me (and I suspect it’s true for you as well): from one migraine episode to another, my migraine changes.  There’s the pinching, bubble-headed migraine that usually seems to be triggered by neck pain.  There’s the left-sided, airhead-y, vice-like head pain that is a hallmark of menstrual-related migraine.  There’s the ghost-like sense of a migraine, the strange not-quite-right feeling that dips and recedes, threatening to set in as a full-fledged attack.  Sometimes I am sick to my stomach within an hour of the head pain setting in; other times I can suffer from a week-long attack and never feel nauseated.  Sometimes one glass of wine will trigger a migraine the following morning; other (very rare) times I can have a couple of whisky drinks and wake up the next day feeling like a million bucks."Migraine.com

Interesting topic.

My migraines have changed significantly over time. Due to the fact when I was quite young the symptoms were very specific and the aura was mild but when I was older the persistent migraine aura has gotten quite intense and the vertigo as well has changed. Each migraine as well can be quite different from another... one quite worse with nausea or IBS-D, or with an intense visual aura, with different visual auras, or  significant vertigo, or a different pain intensity, type, both sides of the head, more fatigue, a short duration vs a status migraine, weather trigger vs the dreaded hormonal trigger, slow onset vs very rapid onset.

Also important to remember my migraine experience is different from others migraine experience. I may have had a lot of years of experience and have experienced episodic migraines and chronic, silent and pain, migraine with aura (but not migraine without)... but there are a great deal of migraine types I have no experience with like HM for example and some people have suffered for longer than I, have different triggers, different experiences, different patterns, different treatments, different solutions, different stories. Their migraines are not my migraines. And my solutions are not theirs. And we cannot make judgments about each others solutions  Always a good reminder. Also can't minimize each others pain. I get that chronic migraines are horrific and difficult to manage when they get to that point... I live that story. But before my migraines went chronic, they were borderline chronic for a very long time and ill managed... fluctuating from 10 to 15 regularly depending on the duration of the hormonal migraines. I was not really put on any effective preventative. Every third day I guess or more. Side effects to the few medications that were attempted drastically effected my studies and no medications was obviously not good. Just a triptan which could not cover them all... violently ill during the hormonal migraines at the time. Without a preventative... these migraines were all acute. It was crippling and I ended up having to take a break after my Masters because I was not able to manage my academic career; I mean I was able to succeed  just through a haze of pain, with a great deal of effort, and it did effect the quality of my work and my intention had been to just take a year off to get treatment. That by the way did not work because working full time turned out to be just the trigger needed to put me way over into full time chronic migraines... well over... way way over... and never ever got lower than 15 after that. Point being I was still episodic while suffering as bad as I was at that time with these acute attacks, violent nausea  vomiting, regular status migraines every month, blinding auras... borderline but episodic. And I would not say that meant in any way that I was suffering less .. I would say that it was vital that I should have been effectively treated given the frequency of my migraines in order to prevent just what happened.

I can think of slices of time and where my migraines were at and sure all those slices ended up to now. I can relate to a lot of people because they remind me of where I was at one time and that means if they get migraines three times a month I think that is just as important .. if not managed I know exactly what can happen. Every migraine is important. If they are managed then very good. I remember a time when mine were well managed as well and that was awesome (aside from the hormonal ones but they are a special case). When I was younger they were infrequent (12-17) and I used to just sleep... since I never had migraine treatment until my early twenties. But some experiences I can't relate to because I have not experienced them. Or some medications I have not been on. Or side effects I have not had. Or emotions I have not had. But every experience is valid. It is good to know when we share something on a forum to try and figure out what is going on... usually someone else, or several, have actually experienced the same thing... less isolating. But no judgement if you get one migraine a year or thirty a month.... the disease comes in all forms, frequencies and intensities.

A very productive day






My sleep schedule has been very messed up... and my brain rather brainless due to the topamax so productivity is rather erratic. Annoyingly so. Frustratingly so.

However, apparently when you get very little sleep you can be more productive. Which is what happened today. It started off with not being able to fall asleep right away and then ended up with waking up far too early in one of those half awake can't really get back to sleep annoying topamax states I have been getting. I am way more prone to delayed onset insomnia... not this early morning stage one in and out not really sleeping crap. I gave up and just got up. And then a whole bunch of things occurred to me to do.

Mind you I was leaving the house for my psychologist appointment so... there were things that I wanted to do all around that. Bank and pharmacy included.

Still I remembered to get two extra things from the drug store that have been on my to-do list forever...

One... liquid magnesium. I have problems digesting magnesium supplements but magnesium is a big deal for fibromyalgia and migraines. (see Fibromyalgia and magnesium deficiency)

Two... grape seed extract. Because of the research I did for the article grape seed extract and benefits to fibromyalgia ... any specifically for me the additional benefits grape seed extract has for eczema, allergies and related conditions. It is a great overall antioxidant so I figured why not? Plus eczema has been insanely itchy since winter has hit.

Magnesium was the big one... very important and one my neuro recommended a while back. I just could not tolerate it. So I have been looking for an alternative. Grape seed in something that is not really something that would conflict with anything I take... and that is vital when considering to add anything to my regiment. Anyway with the lack of sleep I stood in that isle for fifteen minutes... trying to focus on the bottles with my eyes playing tricks on me and that damned florescent lighting burning a hole in my retinas trying to find just any bottle that had any different kind of magnesium let alone the grape seed. Found the grape seed first. Could not find the magnesium I was looking for but when I went up to the pharmacist and asked for my prescription and asked about alternatives turns out behind the counter they have a liquid version... I asked if that is the sort that is easier to take and digest (and not the kind that is a laxative!) and he said it is often taken for people that are deficient or for people with migraines. Bingo! And I thought what the hell... why had I not asked months ago. Instead of wondering around lost and befuddled like I had today? Likely because usually I am in too much pain and I want to be in and out. Today the pain was mid-level and mostly I was just confused and exhausted... it was easier to just ask and be done with it.

I am in a lot of fibro pain lately because my sleep cycle is too erratic and the weather is turning. And because I was not able to maintain the exercises I needed to maintain while off... but I will try to get back into that while I still can. I hope that increasing my magnesium, something that really we all should, will help with that. The grape seed is just a bonus...and potentially could help with other symptoms... like the need to itch all my skin off.

So remembering those two random things was quite the feat. Astonishing on just a few hours of sleep. Seriously my eyeballs feel covered in sandpaper. However I am going to use this extreme fatigue and sleepiness to go to sleep at a decent time and try and adjust my clock. You never know... might kick its ass in gear and be somewhat functional tomorrow. Stranger things have happened.

Control....

I have always admired people who are their own advocates. I mean those people who demand service from their doctors and fire their asses when they don't get the service they deserve.

I'm not one of those people.

I think I was at one time. I think having fibromyalgia for so long sort of killed that in me. I mean you put up with a lot from doctors when you have an invisible disability that a lot of doctors do not believe in or are incapable of treating or are completely indifferent to or treat you like a chronic complainer. Along with societies perceptions of you of course. You sort of just don't talk about it... at all. You sort of just deal with it. Literally I was diagnosed with it and then just nothing. So I assumed anything lifestyle wise, diet, vitamins and coping was left to me. And it was. And treatment wise was their forte but... it wasn't really. There was no treatments really at that time. There were a few ineffective drugs with many side effects they were not willing to give me because I was 'young'. There were painkillers they do not give to people in pain. There were sleeping pills they do not give to people with chronic sleeping problems. That really just left the occasional severe flare up of symptoms... like severe IBS, new symptoms like eczema or whatnot... or the chest wall pain that was misdiagnosed three times. Things like that. And being patronized. And mentioning things and having them say 'thats just FM' and having them be very wrong fifty percent of the time. Do you have any idea how many times I had to mention the symptoms of FM before I was diagnosed? I had one doctor who was seriously looking into the issues as a child but after him... there was one I literally wanted to strangle because of his idiotic assumptions.

Point being after a while you just learn to say little. If a symptom occurs and is mild... do nothing. If it lingers pay attention. If it is severe wait and see. If it goes away... no big deal. If it does not... then go to the doctor. See? That is my mentality. There are literally symptoms I have that I should say something about.. but I usually forget because they are mild and it just does not seem that important. I think they likely are, but I don't want to bog him down with the little things. I don't want to go frequently. I don't want to be a hassle. I don't want to complain. I want to be all stoic and such. Remember that this attitude was cultivated by the medical community themselves over time. I mean I know a lot about fibromyalgia and migraines... I was more than willing to be an active participant in the conversation. They bumped me out. Made it so my FM health was completely on my own activities outside of the medical community... so actually I had all of the control. Can't afford alternative treatments though. And could not do herbal as it might conflict with my other meds though. But anything else... all in my power, just with no guidance on their end and no conversation on their part.

This bleeds into migraines however... into everything. Because it is how I interact with them now. So... when I have a status migraine I prefer not to go to the ER. Because I don't want to make a fuss. Because I know what the treatment will be. And I know it is not an effective one. And I know they will not listen to me when I say it will not be an effective one. Even though I know having a status migraine is dangerous to me... even though I know I have had at least one status migraine that caused permanent damage. When I was struggling severely with my migraines my doctor said he could put me on short term leave back in 2010 and I literally told him not to because I knew it would make my work situation worse... but if I had a doctor I could trust I would have said 'hey by the way, I'm totally suicidal right now... so you really ought to consider a long term leave'. But I don't. I did end up on short term obviously because I did I try to commit suicide. But not long term leave because apparently he did not think I warranted that. Is that because I am that good at being stoic? Maybe. It very well could be. At the hospital I literally was drugged to the gills and made him believe I was good enough to go home. I must be that good. Because of the retrograde amnesia I honestly don't even remember how I did that. Point is, yes, I hold back a lot. On the emotion stuff... hell yes I hold back. Back in the day fibromyalgia patients were completely dismissed by doctors because it was 'all in their heads' or they were just women who 'complained too much or could not handle pain' or they were just 'depressed'... and I worried about that because when I was younger prior to being diagnosed a doctor said I was just 'chronically depressed' even though I had had symptoms since childhood and they had just gotten worse... and it was the severity that was making me depressed. And I had been depressed I'll give you that, for that year anyway. Then my father who got FM later in life after a sudden illness (the rapid onset kind) later got depressed from it and some psychologists try to pull that on him as well, which royally pissed me off. So I fear that 'label' because I fear them putting the label on top. I don't anymore... because I know the depression that I feel is not this constant overwhelming force. It is very much associated with my pain. It is this situational depression. It is like a symptom... or also likely a pre-migraine thing as well, that happens too.

And there is this second aspect about this that doctors themselves create. That is specialists. Where I give my control to them. I feel that I must. Because they present a plan and if I don't agree with it then I am considered 'uncooperative' and not willing to go forth with what he set out. And that going into a report. And that is what my insurance company sees. That I was not willing to do as he suggested. Therefore I have to cooperate even if I do not agree in order to hopefully get my insurance documents I need.

I can't fire a doctor like they do in the states. I can ask my doctor to be sent to another neuro, like my old one... who won't be much help at this point... but if he does, then it will take months to see a new one. And I don't have the time. So compliance for a short term is fine. I don't intend to see him for long.

When it comes to my doctor. I am unsatisfied with him. He is fine but fine is not good enough. There is a doctor shortage here. So finding one who is taking patients is impossible and I should know... thats how I found him. However my bf doctor is awesome and she helped him greatly and I have been very impressed with her from the beginning. Since we are family I might be able to get to see her... when is an issue. Maybe if I start fresh lay it all down and see what she things... maybe I can worth with her.

When I get to the headache specialist clinic I'm on a waiting list for I think that will be good as well.

Fibromyalgia treatment and burden of illness

Fibromyalgia treatment and burden of illness - There are so many things about this that drive me nuts.

Firstly... my own personal experience- I have had very little fibromyalgia treatment. Almost nill in fact. Really you might as well say any treatment I have had I had sought out myself. Alternative therapies, massage therapy, herbal therapies, diets... I researched it and I tried it. No guidance. No nothing. I was diagnosed by a specialist and I Never saw him again Ever. I think that was 13 years ago but it might have been a little more.... I can't quite remember if I was 22 or 21. The timeline is hazy. Anyway, in all that time no doctor ever gave me any FM medication or treatment. Occasionally a symptom that got specifically severe, like IBS-D would be addressed, or a new symptom like eczema would be diagnosed and addressed and put into the 'FM BOX'. Or I would mention something and it would be put in the 'FM BOX'. The only two times that were different were this: my last neuro about five years ago put my on Lyrica as a migraine preventative because a) it is a off label migraine preventative and b) I have FM and c) since I have both treating both might be beneficially. Brilliant deduction my man. I thought of giving him an award or something. Second situation since I have pervasive sleep issues due to FM I also have sleep deprivation all the time, which was apparent from all the sleep paralysis I was getting and so forth and sleep deprivation was triggering migraines at night and in the morning frequently so my doctor at the time prescribed me a sleeping pill. And finally I got some sleep, not a lot, but a whole lot more than I was getting before. So two migraine related things coincidentally helped me with FM. Other than that.... nothing directly related to FM.  Oh wait, that same neuro also put my on Cymbalta, with the Lyrica to see if it would do even better for migraines and FM... sadly, had a very bad result for me, but interesting idea.

So my story is.... no story. I wish I had seen a specialist again. I wish I had some guidance. I wish there had been a plan of action. Something early on to guide me along. Instead of me floundering around trying to figure it out. And I gave up on doctors when it came to FM. I just let them focus on the migraines like they clearly wanted to do... because they understood them. And FM got left behind.

What is the story of other people? I bet some are like me. But clearly the story is one of complete and utter inconsistency. They have no guidelines for what drugs to use... they have a huge pool of drugs they choose from... some of them so off label it is insane. They don't even agree on the non-drug therapies so they are not even consistent, often choosing the ones with less evidence to support them. They don't seem to be choose the main FM medications as often as they should be, at least to try first. And patients over seventy percent end up with 2 to 4 meds.

And with all this inconsistency? With all these different random med choices? The burden of illness is still very high.

Hmmm I wonder why? Wrong meds? Too many meds? Too many of the wrong meds? The right meds with the wrong therapies? The meds are just not working?

I'll tell you this... they need guidelines. Proper plans of action. These are the meds you try first. These are the meds you try next. These are the go-to therapies that are most effective. An action plan. Consistencies. No weird off the wall off off label drugs.... unless you need to get to that point because lets face it migraines have no preventive drug For migraines either so you gotta do what you gotta do when the regular go to list doesn't work.

And much more research on the effectiveness of the three FM drugs as well.

So no treatment isn't good. And over-treatment isn't good. Effective treatment would be nice. Let's aim for that shall we?

And after saying that... one of these days I ought to see a specialist again. it has been so long I have no idea what they even recommend for FM these days.

Topamax, weight loss and food apathy

Weight loss is one of the more attractive potential side effects to topamax but not one everyone has. The first time I was on the medication I did not have it and I believe it was because there was no change at all to my eating habits... which was good, my weight was perfectly fine at the time. When I was on a very low dose this time I did consistently lose weight and I have wondered why. I think I have realized why, but lets discuss it for a moment here.

I'm going to tell you what I ate today and I know that is insanely boring. Usually when someone starts telling you in infinite detail what they ate for breakfast and then lunch and so forth it literally can bore you to death but bear with me. I ate a rice crispy square, a small unsweetened apple sauce and two pieces of toast. In an effort to eat through the day. I would have considered this an awesome success if I had eaten supper, which I didn't. Usually I just eat supper. On Fridays sometimes we don't because I'm not hungry and don't feel like cooking... usually my bf doesn't feel like a large meal on Fridays. So he makes something small and I say I will eat something later when I am hungry... which often I forget to do. A significant problem if I have also forgotten to eat the rest of the day.

Topamax creates significant food apathy. You go to make a meal or eat a snack and Nothing appeals to you. You Desire nothing.

Topamax makes you insanely absentminded  So even though you have no appetite you know you should eat and so while you desire nothing if you distract yourself for one moment... like wonder away to go to the bathroom, you will forget that you were just a moment before in the kitchen trying to figure out what to eat.

Topamax for me anyway makes me feel ill in the stomach so eating many things does not sit so well. Applesauce by the way was rather a mistake... apparently too acidic for my tastes and I thought it would have been nice. Whatever stomach, whatever.

Insanely small amounts of food therefore make you feel very full because you were not hungry to begin with.

So aside from forgetting to eat supper today, the fact I ate the rest of the day is actually amazing. Yesterday it occurred to me several times... I wondered off and got distracted and that was that.

Now I lost twenty pounds and it seemed odd at the time. I do not have good eating habits. There was a time when I tried to maintain good ones... but nausea and IBS-D combined with actually trying to work with those two conditions and the migraines made me realize that my previous methods of not having food in me at work... was less torturous for me. Although I was trying to find what foods or methods to work around those issues. I had appetite issues, nausea issues and digestive issues wrapped around the chronic migraine issues. It meant I only really ate supper.

So how could I have lost weight? I already had no real appetite. I already had food apathy really. Although you could pique my interest with new and interesting things. Or cheesecake. Or any kind of cake really. Well... topamax is sneaky. I ate less at supper. My portion sizes shrank. I did not finish what was on my plate. And most important... I am an insomniac and I am a midnight chip eater. I would say those snacks were my main calorie intake really. I crave salt over sugar any day of the week. But that diminished significantly. Without my being even aware of it. Literally had no idea until my bf pointed out that he did not need to buy chips because apparently we had not eaten any. What? Really? Coming for someone who honestly thought she should buy a salt lick and be done with it? Yep, apparently that Craving disappeared... because it is just a craving. So if you are not hungry, and you have no appetite for anything and no midnight cravings.... then really you are just forcing yourself to eat what is in front of you. And yeah then you lose weight. Because food is like this chore.

And it is sort of good in the sense I needed to lose that weight. It brings me back into the area that is were I need to be. But I still do not eat right. And worse the more topamax you are on the worse the stomach related side effects get. And my stomach related side effects do not need to be worse. It does not help if the food I do eat does not actually stay in me and I get so ill I wish I had not eaten at all. Leading to huge worries over dehydration. Also the more befuddled you get the easier it is to literally forget to eat completely. Also losing weight the way I did, when I was really not eating enough as it was, could not have been good... and yet I was not even aware of the fact. It was only recently when I realized how much weight I had lost, when clothes literally drooped off me, when people commented on it... that I even noticed. And then even more recently a few days when I forgot to eat entirely that made me realize, damn, I have to literally find a way to remind myself to eat consistently.

So weight loss... awesome. Starvation... not awesome. Thankfully I did not continue that decline because I do eat supper regularly. Although... if I lived alone...not sure I would. I don't generally want a big meal. And so toast seems like a meal to me these days. And just a piece of toast all day? Would be insane, but I could see it. So thank goodness for my bf.

I'm thinking of very bland fiber foods to eat every couple hours... and a reminder on my phone to ensure I do.

Point being... it changes appetite, cravings and taste. For me, not necessarily good things when I have problems with appetite and nausea. Nice to be in the normal range for weight but I would prefer to have a healthy appetite to be honest. Could be good if you are overweight and have issues with cravings though... could be a great tool. For example, some people have said it helps with cravings for cigarettes and makes it easier to quite smoking... I have yet to test that theory, but may soon. It does make them taste differently. Also makes pop taste funny, which can also be a good thing to cut that out.

Weather migraine trigger


This is what woke me up this morning with an acute migraine. Actually I woke up with an acute migraine prior to the storm rolling in.. Because my brain is awesome at predicting weather like this. And I rolled out of bed, stumbled into the wall and then the kitchen to take my triptan. One would think you would just keep sleeping because that would be the best thing to do but not when the migraine wakes you up and is full blown acute. I tried to get back to sleep... no such luck. Managed to work the pain down to the moderate zone for the rest of the day while it snowed and snowed and snowed. This was about 5:30 and still snowing. Clearly winter has arrived. Sadly.

All about the meds... topamax funness






When does this Topamax kick in anyway? I'm up to the second week on 200mg which is twice the recommended dose for migraines... and the migraines are still daily and at the same level as usual. Going strong. Generally the rule of thumb is top up and stay on them for three months before you discard a preventative and that is what I'm going on. No need to give up just yet since I'm not at the 400mg yet. And I'm curious as a mad hatter what 400mg will accomplish. Possible I will be as mad as a hatter by then... so insane I will be babbling out words that make no sense at all because this drug apparently destroys the ability to comprehend language as well as speak and write it (that all gods for spellcheck...I spelled gids there you see, so right there is just one example, if I just left this unedited you would all have no freaking idea what I was saying at this point). I believe that side effect verbally has significantly improved from last week, so I am ready for next week whereby it will significantly decline once more. Other than that funness... I have been experiencing overall crappiness..illness that reminds me of the worst stomach flu ever. But that has also diminished... or have I forgotten to eat again? Either way, it is a little better. Not significantly, but a little. I also am getting some aching chest pains... but I'm looking into that on... may be related to potassium, which can happen with this med.

So no effect on migraines as of yet.

I'd rather hoped for an effect on the persistent auras by now. At the very least the scintillations.... those would be the scintillations that came back daily when I went off verapamil. But so far no. No effect on the warping, moving of objects, pulsations, double vision, halos, corona effect... but I hope to have that treated instead with Irlens filter glasses... because that will be faster, more immediate and will reduce a grouping of the aura manifestations that cause significant impairment to my vision. definately no improvement in the visual snow... that is clear during the day and so thick at night I swear I could reach out and grab a big chunk of it. It is thicker than it has ever been.. I blame all the other aura crap around it making it appear so much more thicker.

So definitely no affect on persistent migraine auras yet.

People do take topamax for migraine associated vertigo in much smaller doses so really I should be seeing a benefit to the vertigo. And the answer is had to say really. Because it is motion sensitive and I have not been diving a lot lately to test that one out. However, in regards to the vertigo and associated symptoms that spontaneously occur,... no, they remain. I'm falling into things, bumping into walls. I keep swaying on my feet, which sometimes leads to me starting to fall and catching myself. I sway when I am sitting too... just suddenly sway forward. My head feels weird all the time now, so the weird spinning feeling that hits you for a second and repeats happens but feels funny.

No real impact on MAV as of yet.

So we will see in three weeks what I feel like at the max dosage. Assuming I am able to construct sentences at that time.

Chronic pain rewiring the brain

Chronic Pain Harms The Brain  ScienceDaily (Feb. 6, 2008) It's like I always said that continues dysfunction and firing in the brain changes the wiring and makes us wired for pain... and apparently wired in other ways as well. How could it not really?


Researchers found that in a healthy brain all the regions exist in a state of equilibrium. When one region is active, the others quiet down. But in people with chronic pain, a front region of the cortex mostly associated with emotion "never shuts up," said Dante Chialvo, lead author and associate research professor of physiology at the Feinberg School. "The areas that are affected fail to deactivate when they should."
They are stuck on full throttle, wearing out neurons and altering their connections to each other.
This is the first demonstration of brain disturbances in chronic pain patients not directly related to the sensation of pain.
When certain parts of the cortex were activated in the pain-free group, some others were deactivated, maintaining a cooperative equilibrium between the regions. This equilibrium also is known as the resting state network of the brain. In the chronic pain group, however, one of the nodes of this network did not quiet down as it did in the pain-free subjects.
This constant firing of neurons in these regions of the brain could cause permanent damage, Chialvo said. "We know when neurons fire too much they may change their connections with other neurons and or even die because they can't sustain high activity for so long," he explained.
'If you are a chronic pain patient, you have pain 24 hours a day, seven days a week, every minute of your life," Chialvo said. "That permanent perception of pain in your brain makes these areas in your brain continuously active. This continuous dysfunction in the equilibrium of the brain can change the wiring forever and could hurt the brain."
Chialvo hypothesized the subsequent changes in wiring "may make it harder for you to make a decision or be in a good mood to get up in the morning. It could be that pain produces depression and the other reported abnormalities because it disturbs the balance of the brain as a whole."
He said his findings show it is essential to study new approaches to treat patients not just to control their pain but also to evaluate and prevent the dysfunction that may be generated in the brain by the chronic pain.

Migraine in Children

I have no idea what they mean by appropriate treatment in this article... half the crap they give to adults they can't give to children... so who knows what they do in these cases.

Children with migraine are more likely to have below average school performance than kids who do not have headaches, according to new research published in the October 30, 2012, print issue of Neurology®, the medical journal of the American Academy of Neurology.
The study of 5,671 Brazilian children ages 5 to 12 found that those with migraine were 30 percent more likely to have below average school performance than those with no headaches.
“Studies have looked at the burden of migraine for adolescents, but less work has been done to determine the effect of migraine on younger children,” said study author Marcelo E. Bigal, MD, PhD, of Merck & Co. in Whitehouse Station, New Jersey, and a member of the American Academy of Neurology.
For the study, the students’ teachers provided information on students’ performance that was the same information provided to educational boards. Teachers also completed a validated questionnaire screening for emotional and behavioral problems and interviewed parents with a questionnaire covering medical history, headaches and other information.
The study found that 0.6 percent of the children had chronic migraine, or migraine on 15 or more days per month, 9 percent had episodic migraine, and 17.6 percent had probable migraine, which meant they met all but one of the criteria for migraine and did not meet the full criteria for any other type of headache syndrome.
The link between migraine and poor performance in school was even stronger for children with migraines that were more severe, lasted longer, or for children with chronic migraine, as well as for those who also had emotional or behavioral problems.
“With approximately one-fourth of school-age children having headaches with migraine features, this is a serious problem, especially for those with frequent, severe attacks that do not subside quickly,”
Bigal said. “Parents and teachers need to take these headaches seriously and make sure children get appropriate medical attention and treatment.” -American academy of neurology

Visual snow insanity

I would really like to know what makes visual snow so very vivid on some days. In my case it has increased in intensity over the last few years. And I believe it must have something to do with the fact that the migraine associated vertigo also increased in intensity. Thus making my persistent migraine aura, visual snow and vertigo into this one ball of weird symptoms that are visual, but also motion sensative and Move. This new entity of madness.

So the visual snow is worse. It is very noticible now, whereas before it was just there. It was odd, and there, but not something that bothered me. It was like a background to all the other aura stuff going on. Now it is the crazy vibrant background that makes everything more twisted and pulsing and flickering, and shaky vision.

And today, like some days, it just gets insanely worse. It gets so thick it looks like it is this mass in the air before objects, which disorts them and makes me unable to see them, (normally visual snow looks like a flat field of static on an object really or right in front of it). If I looked at a black space in a closet between objects that black space was full of vs, it looked full of something almost tangible there was such a thickness to the visual snow. Against my dark curtians a thick mass of visual snow writhed in front of it, so much so that it was like I could reach out and touch it. Hell it was like I could see it in the air in front of me, like the air between me and the curtains we full of it. Being as the room was dim, it was easy to see it. I looked at a picture on the wall, an Adsel Adams print, and it too was grainy from the snow. I tried to ignore the snow to focus on the picture but I couldn't because my vision went darker and I kept getting afterimages of the pciture every time I moved my eyes.

Why the change? Is it because of the topamax increase? I would hate to think the topamax is making it worse. Long ago topamax did reduce some of my aura symptoms, so I would hate it having the opposite effect. Or is it because of the fact I have been so sick, from the topamax? My super low blood pressure and low heart rate... do those affect visual snow?

Another thing I noticed is this extreme change when going from light to dark and dark to light. The first was dark to light. As in dark house to light bathroom... turn on the light and I was blinded for seconds in my whole visual field by whitewash and then yellow as it creeped back in. Then yesterday I went outside very breifly without my sunglasses to talk to my bf on a bright sparkly day when back into my nice dark house and again was blinded but this time my vision flickered and blicked rapidly with a different color (now I forget what the hell it was, I might have to repeat it as an experiement like I did the other one!). It is like the eyes are shocked by the light change... like extreme photosensivity on hyperdrive or something. And I never noticed this since I wear my sunglasses all the time. Just another sign this stuff is getting worse, not better.

It is weird but nothing to do but power on and see what happens.

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...