Oh the brainlessnes of it all

I went to see my shrink today but i can't honestly say it was that productive. You know when you have a wickedly bad migraine and you can't think of the word you want to say and you can't seem to finish sentences and your words are coming out funny?

That was the entire conversation.

And yes I do have a wicked migraine. That seems to be the standard these days. And apparently my tripan simply isn't up for the task of handling them.

However it is more the topamax that is to blame for the complete brain failure. And my psychologist obviously noticed the fact. And I said it was complete brain failure due to side effects. She said perhaps it would be better to see my old neuro and return to my old meds.

Well, yes, that would be nice in the sense that the painkillers help give me with pain management in addition to the Maxalt, which is obviously a benefit and the verapamil helped me to some degree with the vertigo, and I think to some extent helped with the intensity of the migraines to be honest if the last few weeks is anything to go on. But what was the case wasn't working was it? And I do need to place nicey nice with this neuro while on leave from work and if this doesn't work then we can move on to something else. And I don't know if this doesn't work. It is far too early to tell. If he wants me at 400mg of topamax and I'm only just barely at 200mg then who knows what 400 will do? And generally the rule is you have to try it for a few months to know. I can't just say this sucks and then go back to something that sucked less. That would show that I am 'uncooperative'. And the side effects do really really suck at this point but it took me months to get used to a far lesser dosage. So I think I will be dumber than dirt for the foreseeable future. I loath not being able to function though. I find it mentally depressing really. Because it is hard to distract yourself from the pain you cannot treat when you are incapable of doing anything.

The shrink thinks I have a sort of defeatest attitude or am too passive. I wasn't sure how to respond to that. Literally... I had no idea how to respond because I can't think. I mean I don't completely disagree with the topamax as a treatment. I do disagree with the lack of painkillers. Since I can't take anti-inflamatories and triptans can only be used three times a week, I think a painkiller, especially the mild one I was using, also three times I week... is completely within reasonable limits. But this neuro laid out the plan of action and I feel it best to try it as suggested, tow the party line as it were, so that if it works - awesome- and if it doesn't he will be more receptive to helping me have more time on leave to find something that does.

Or at least that was the general idea. Until I found out how sick I was going to get from the topamax and this unrelenting pain and increased vertigo. So this ideal plan of his that I increase my exercise, quit smoking and quit drinking caffeine has not necessarily worked well for me. My sleep cycle is screwed right up, I have stopped exercising completely because my pain levels have spiked right up and I have no way of controlling them. I have quit the caffeine which was as I had mentioned the one that was no problem, except for the nausea issue. And I was going to quit smoking once I had the others under control, but now I'm so stressed from all the pain I'm not sure I really want to. But I should, might as well add that misery into the mix. Just to say I did.

Every night I think tomorrow I will get up early and start my routine and I will feel less crappy. I will shake off this grogginess. I will do something to get through the pain. It will be better. I can start the coping process again that was messed up by this med change. And every day I wake up feeling like This. With This pain level.

Just in case that other song depressed you...

isn't this song awesome... and the video as well. When you think you are overwhelmed watch this and look at the big picture. I was going to use this song the song in the background of a meditation.


Whoa... side effect hell

I'm in serious non-functioning mode because of this medication increase. It is hard to just get up.

Also with the vertigo hard to just stand up. Yesterday I was standing in front of my bf ready to leave the house... first time in a week I'd say. I swayed forward so hard I thought I was going to fall and your natural reflux to the sensation you are falling forward is to move back and then I started falling backwards so far that my bf had to grab onto me... just stumbling around as it is really.

Mind melting goop is what this stuff is too. I get that it will take some time to get used to, but in the meantime all those nice routines I had set up are shattered. Getting is a immensely hard goal. I'm so drained it is just insane. And I'm also getting sick to make matters worse but that is hardly surprising because I keep forgetting to do things like eat and the weight loss effect continues, plus my blood pressure and pulse seem rather low. I'm also rather sick to my stomach and IBS wise and have been for over a week now so hard to say if any medication is actually having any effect on me at all since it doesn't seem like anything stays in me long enough to actually digest. So I just feel weak is what I really feel and immensely fatigued.

As you can imagine that isn't exactly making the migraines go away. Keeping up with dehydration when your digestive system is in IBS hyperdrive is really hard to do and migraines don't like that. They also don't like messed up sleep cycles and I can't control this insane fatigue. I forget to eat and thats not good. I eat and I get ill and thats not good.

Side effect hell is what it is.

Scariest Migraine

 Here is my October Chronic migraine awareness blog about my scariest migraine for the Chronic Migraine Awareness

With chronic migraines over the span of time I have had them for there have been extremely intense ones and there have been ones with very scary symptoms. All of which I could use for examples because at that time they would have stood out to me as the scariest migraine I ever had... until the next incident that was more intense or more bizarre. So over a long span of time you begin to expect large variations in pain to the very extreme to the non-existent (silent migraine, which can be in fact scary) and some extremely varied and bizarre aura symptoms that create a funhouse effect that isn't so fun. If you read this blog at all you get a feel for that... I'm not liking all the aura symptoms at this point. The migraine that caused permanent damage to my hand could be classified as scary, but I would say more 'unexplained' and 'disturbing'.

So I would actually have to pick a migraine that in fact was no different than any other long lasting acute hormonal migraine i get every single month. In no way special or distinct from any other. What makes it profoundly scary... and gather around now and listen closely... is that I get them every month and every month they are a torment and every month I missed work from them and every month my employer caused additional stress/veiled or unveiled threats about my 'situation' and every month I felt so guilty about missing work but knowing I could not possibly do any better and that it was never going to get any better. Nothing unusual with that except I was thinking about it and not sleeping and thinking about it and not sleeping. And then a single thought occurred to me: 'why should I have to suffer like this?' And I had no answer to that question. And in that profound amount of pain knowing I could not call in sick and knowing I could not function I lost my desire to continue my existence. The thought of having to continue trying to function through the pain while working when it was blatantly apparent society was indifferent to my suffering just seemed like I was willingly enduring this torment for no logical reason. In that moment of acute pain, which granted at that point had lasted days and days, but still this was a Common occurrence, I just lost the battle. This was in no way an Unusual migraine. It is insane how pain can consume reason... it is scary. And so that would be the migraine that literally almost killed me. But my sheer luck it didn't. Just plain luck. And that is pretty scary. But it is pretty scary to think that any migraine could take me from just thinking 'I can't take this pain' to 'I'm going to kill myself'. Any migraine. Can't get any scarier than that really.
And maybe it is just the frequency and intensity and lack of pain management and the intolerance of my employer. Whatever. It still scares the hell out of me that there is such a fine line between thought and action... because I have suffered a very long time with chronic pain, since I was kid in fact and in that time I have certainly understood that pain can cause emotional and mental stress. I had numerous ways to deal with those stresses because I understood they were a perfectly normal response to being in that much pain chronically. It doesn't matter because it is this constant, consistent entity... pain. So it is pain plus whatever else is happening in your life, plus mood, plus medications, plus, plus, plus. So we all develop these coping strategies but when pain intensity is high we can drown in it so very quickly if we are even remotely unprepared. So when a lot of factors are in play and that pain is high for a significant amount of time it is extremely stressful and that is what happened to me. I was vibrating with stress for months. Just trying to stoically bear the pain because 'that's what we do' right?

Anyway surely those conditions will never happen again now that I am aware of the risks right? Well who knows? I don't. And that's scary. Just the thought of working full time now scares the hell out of me. I don't know if I am capable of handling it anymore. Ever since then I have not been the same. When people ask me how I am doing, honestly ask me anyway... I get tearful and I never did before and its because I don't know how to respond anymore. I have tremendous anxiety thinking about pain and the future when thinking about work. It is a very scary thing. Because no matter what people say, it is insanely hard to get disability for migraines and a very hard fiscal choice not to work. And if I do go back to work how long will I last before I end up in the same mental place? How long will I endure that existence where I am just enduring that extended moment of pain, losing time, forgetting essentially years, where everything seems to get hazy and blurs together because I am in this extended survival mode... until I get more and more desperate? I fear that state so much. How did I even do it I wonder? because I can't comprehend it anymore. Something inside of me has just refused to do it anymore. Like, despite all the good and valuable things about working, the torment of it was what was killing me and doing it again would just lead to the same thing. Honestly just writing this is causing some anxiety and I have no idea if you guys can relate to this sensation or not... but it was like when you work full time through all that pain, the pain intensifies as the day progresses and consumes you and owns you and then that is all there is. By the end of the day it is no intense there is nothing left for you. And literally my perception of time was skewed by it. Literally I remembered little of events, or faces or experiences. A life lost in pain.

So lets recap. Scariest migraine was just a migraine... that happened to almost kill me because of the thoughts I had that day.
And it scares me there is a fine line from suicidal ideation to action
. And its scary any migraine could potentially do that
And it scares me that the conditions that cause that one, the perfect storm as it were, could arise again.
 And returning to work scares the hell out of me.... a big factor in my perfect storm.
 And I'm just plain scared I figure. Of insurance companies, neurologists, doctors and their lack of the ability to see I need some freaking time off.


And finally.... scary pictures.....




A blurb about persistent visual aura and visual snow

A little clip about persistent migraine auras and visual snow... not much but a little something anyway. Notice it says 92% of people with visual snow did not respond to medication? Same with me; I did respond to medication for my migraine aura though and you'd think it was similar and my visual snow had diminished in intensity at one time but it doesn't go away for sure. Fasinating that it occurs wiht people without migraine with aura as well... since you'd think it was a sort of aggravation  of the mechanism that causes the aura, as in same part of the brain but obviously they are not certain if it is the same and obviously if migraine patients who never get a visual aura get visual snow something different is going on there.  For persistent visual aura... never been on those meds and this is a new paper from 2012. You'd think if this new neuro was trying something new he'd think of one of them, but apparently he would rather think of something old rather than new.

Hyper migraine continues

I had to go to the doctor so he could fill out the forms the neuro didn't fill out but that brutal migraine from yesterday was still kickin. Not a 10 thankfully... more like a persistent 9 but still the same sort of extremely motion sensitive pain through the entire head. Obviously no way in hell I could drive so I called my mom and thankfully she was able to give me a lift. Hyper sensitive pain, light sensitivity, sound sensitivity .. just like a migraine on crack. Like the migraine I had that I was not able to treat that night I could not sleep with that infernal vertigo damn well broke my brain.

Not that this type of migraine is unknown to me, but it is not expected in out of the blue like this. It is expected after days worth of a status migraine or a week long stretch of nasty migraines. Then this weird motion sensitive pain can kick in. Obviously lack of sleep and the inability to temper the pain with a painkiller are also factors. And apparently I get to have it last even longer... joyness. I took my toradol injection as that  is my only other option to the Maxalt, but in order to do so I have to take something for nausea and another med to protect my stomach and of course water and food. All that seems to have eliminated the side effect of stomach pain this time anyway.. so far, sometimes that can be delayed a bit. And the pain is going down to about an 8 so that is great.

Still a day of non-functioning due to pain. And my blood pressure according to the machine at the doc office is 93/63 on the third reading... the first came up with an error because it was too low to read but the next three were around this. Weird. I wonder if going off verapamil actually lowered my bp? It was low normal to begin with at 115/72 on average. Or was it the insane pain? Could explain all the dizziness and walking into walls I guess.


Hit the 10 on the pain scale today from the get go




Today was a 10 migraine pain day all day. Well, I got it down to a 9 so thats something and hopefully I can sleep. It got this way because yesterday night it was an acute migraine with vertigo and that damned vertigo made it impossible to sleep… so I didn’t. As you can imagine the pain intensiifed. Got to that place that is beyond a migraine and just insane. Beyond the ability to function. Every movement of my head caused shards of pain through my brain. Hyper pain. My triptan was useless against it. I felt so dazed and sick and spacy. I made it from the bed to the couch and that was the extent of my day. Because that is what a 10 is. You cannot Do anything. The pain owns you. You just lay there existing in the locked down pain mode.

Even though this new neuro said not to take painkillers… I took a fucking pain killer. Like I should have yesterday so maybe I could have slept. And now at least the pain is a nine. What a horrific day. I hope I sleep at least a little. 10’s are rare and don’t usually last long but then usually I can dull them with painkillers, but my douchebag neuro says that is the worst idea ever. I would like him to have this migraine. Or the vertigo that caused it. Or the insomnia.

I could barely even eat. I ate just a small amount at supper. And it went right through me. Because that's what happens when an acute migraine hits for this long I get sick like that. So the best I can do is drink water to keep hydrated to keep up with it.

What a waste of a day. All day just laying there wishing the pain would end. Knowing it wouldn't because it was that bad I knew it was going to last awhile. And still lasting. I would use my super sleeping pills to knock me out to kill this migraine but then I would be a zombie all day tomorrow... as in another completely wasted day where I would be unable to function, but I have a doc appointment so I do need to drive and function.

Twinkle,twinkle little star...







Well, stop dreaming about me already because I've had some crappy sleep.

The migraines are having a field day because I can't treat them properly so my neck is beginning to hurt quite a bit and my back has been hurting for three days now. So migraine, neck pain and back pain... try getting comfortable and sleeping. Just doesn't happen. And I am tired in a drugged up sort of way from upping my dose on Topamax. Anyway when I do get to sleep it is not for long. Because I'm freaking uncomfortable. So any position I choose wakes me up as being very painful. Then I toss and turn until I find another one and repeat all night long.

Around 6am this morning I got up to slather on more capciacian cream on my neck and back... that wasn't a good idea. Lack of sleep, but with a sleeping pill still in me made for one hell of a stumble around. With insane light blue trailers following after anything... either from the migraine or the lack of sleep or both... I do get those at other times. So I slather it on and stumble back to bed. Where took the entire quilt smooshed it into one big body pillow and crooked on leg up on it and that seemed to be the most comfortable position of the night.

But I did not get up at 10am, even though I was awake at 8 and 9 and 10. I just had no sleep and my head then was killing me. So I waiting until I did to calm the pain... do i didn't get out of bed till 12:30. See? totally screwing with trying to set up a sleep routine. All that time in bed and I still didn't get even close to eight hours.

I've been fighting a brutal migraine all day. And weird aura where things keep moving in my peripheral vision (maybe because I drove today?) and it is now 2:30 am and I'm in so much pain I can't sleep. 

Nucking futs.

Hello rabbit hole

Alice in Wonderland syndrome... could it be I'm getting that all the time now? And that is what is causing the vertigo, the extreme visual issues?

Below is taken from an article about a woman who has Alice in Wonderland complicating her chronic silent migraines. And it sounds a lot like me. If all the aura symptoms I had when I was younger and the AiWS I had them mean I too had silent migraines... then that makes a great deal of sense. I was getting AIWS in me morning but never though it could be like this in the day. If I think of it that way... well hell it explains a whole damn lot. It would explain at lot including the sudden increase in the visual aura symptoms. Because some would be my normal peristent migraine aura and some would be the funky AIWS distortions. I'd mention it the neuro but honestly he would just brush it off like the visual snow.

I am going to make a detailed list of the aura and vertigo symptoms I am having, specifically by name if I have to research every damn one of them.. listing which ones are always there, which ones occur with a migraine, and which ones occur without a migraine and take that to my doctor. So they can grasp how compramised my vision had become. I will recomend they stend me to the Irlen Institite to see if they can help. And I will get my eyes checked again to verifiy they are physicall fine. Enough of this crap.
****
I had no pain but I felt really dizzy and unable to focus. I had a feeling of terrible pressure, and blind spots in my eye.
'All I wanted to do was sleep, not because I was tired but because it was the only way to stop the symptoms.
'When I went back to work the next week I felt OK, but then it started again.’

‘Within about two months I was feeling so dizzy at times that my eyes
went from side to side as if I had been on the waltzers at a funfair. 'I looked drunk — I had to hold on to the filing cabinet to get the next patient’s notes.’
One of the most worrying symptoms was the visual disturbance.
‘I have three degrees and speak French fluently, yet more and more frequently I found it impossible to read, as if my brain was no longer able to decode the squiggles on the page,’ recalls Sharon.
‘And then not being able to recognise faces was scary, really scary.
'That day at the nursery, a few months after the symptoms first started, was frightening. I thought I had a brain tumour.’
Within two months Sharon had stopped working because she was forgetting key information and even telephone calls she had taken.
She saw her GP, who thought the problem was due to bad posture.
Sharon wasn’t convinced and arranged MRI scans, as well as seeing ear, nose and throat specialists and even a neurologist privately, but they could find nothing wrong with her.

This can lead to so-called Alice in Wonderland syndrome.
‘This is most common in migraine, but is also occasionally seen in glandular fever or epilepsy,’ says Dr Silver.

Symptoms include distortion of time, where everything slows down, feeling the wrong size compared with your environment — for example, the room looks four to five times too big or a person in the street looks tiny — or other, very vivid hallucinations.
‘It relates to brain dysfunction, but we know no more,’ he adds.
‘People with migraine like this are often highly motivated and focused, want to do everything for everyone else, are very successful, and have to have everything just right.’
It’s not uncommon for doctors to misdiagnose these forms of migraine, he says.
‘Often the doctor will suspect it’s a psychological disorder, as the patient has a long list of symptoms yet nothing abnormal shows on examination. Some doctors will conclude it is all in their mind, which is something I have a real problem with.’
Indeed, doctors say it is impossible to know how many have Alice in Wonderland syndrome because patients will hide their symptoms for fear of being thought of as psychologically disturbed.
Dr Silver says patients who have migraine should avoid all caffeine and medications and follow a healthy lifestyle with plenty of sleep.

Scintillating scotoma and migraine auras



There.... that is a picture of the migraine aura I'm getting frequently again, but with less of an intense blind spot than usual... or the actual temporary blindness, but it lasts longer too. It is lasting over an hour each time but then this scintillation... the flickering lights seem to be part of my persistent migraine aura.

And here is something funny. I have been Googling my butt off about different visual migraine auras to find this one and found the name for another. Metamorphopsia... which is my distorted vision, when firm lines warble and become wavy that is part of my persistent migraine aura. And I found one called corona phenomena which I have been having since I was a kid... and seriously that makes more than one visual phenomena listed as a migraine aura I've had before I ever had migraines as I knew them that suggests I was getting silent migraines or ocular migraines when I was a kid... so for a very long time before I ever had a migraine with pain (which would be when I hit puberty but I didn't know a headache with a scotoma was a migraine until I was in my twenties). Crazy eh? But some of those visual things seemed odd but not overly affecting my vision, just odd and sure I asked people over the years about them because of it but apparently no one knew... so it remained odd. And so how the hell would you know you are getting a silent migraine if you have no other migraine symptoms? And without this scotoma which is a classic migraine visual aura?

I want to compile a big long list of all the visual crap and say This Here is what I see... now then, Mr. doctor, do something about That then. Because when you mention a migraine aura the one above is the one neuros think of and actually it is the rarest one I get... apparently less rare now with my med change but nonetheless the rarest and the shortest in duration. Still, for that duration it is pretty blinding, I'll give it that. And it can cause temporary blindness which is freaky.

I'll just watch the pretty lights while everything spins and spins






I've been noticing a distinction between my visual snow and an obvious migraine aura lately. And this tells me... I'm getting an obvious migraine aura again. So I guess verapamil does help with my atypical migraine aura because Its Baaaack. Sometimes my migraine aura starts in my left eye in the corner, is blue black and pulses and then spreads across my vision. Sometimes it is a warp of white. Or pulsing. Or a warping field of pink, gold or blue. Or raining drops or blue or gold. I mean it can be creative and I still get them obviously just not as often and I get other ones that are not visual in the mix as well. But now it is this more obvious very think warping field of a multitude of negative colors... so blue and black in there, but others as well that is both sided, and is my entire upper field of vision. I mistook it for weird visual snow at first but this has been now the fourth time it has occurred right before the migraine and lasted for about an hour or more. So typical migraine aura. It should say something right there that my visual snow is that bad that I didn't realize that this intense warping light shifting over my upper vision was unusual. More unusual. I was just like 'huh that seems darker and moving more. Why is it warping in that specific pattern?' Then I would look at a plain wall and go 'oh... thats not normal.' And then not too long after... 'OMG i'm dying. I think my head is exploding. Someone call an ambulance. I think my neurons are literally exploding all at once.' Okay... not that dramatic, but yes, the migraines have been rather acute given I don't have much to treat them with. Nice to know I have an early warning system that is more predictable than 'I feel crappy' or 'my hands are sort of tingly'. But an early warning system only works if I can treat them... which I obviously only can three times a week with Maxalt which is becoming the bane of my existence right now.

Also I want to complain about vertigo for a moment because that is also getting worse. With the migraines certainly. Like I have a migraine while I am writing this... because I treated with Maxalt yesterday so today is unlucky sucky day. So every fifteen minutes my head spins inside. I mean it feels like I'm moving and my eyes get weird and then things sort of 'shift' like they are moving. This has been going on All Freaking Day. But this is better than the fact that I keep almost falling. And I have almost fallen in the shower three times now. I actually fell into a wall once... but the wall saved me (thank you soft, soft wall) and staggered almost fell from just standing way too frequently, and stumbled while walking. And I feel rather sick to my stomach. And thus my doctor has given me back my nausea pills. So to recap my neuro decreased my meds and this caused my doctor to increase them by giving me nausea meds to deal with the fact the vertigo makes me want to hurl. He also added back the ones that help with my stomach because if I have to take toradol shots in replace of painkillers I'll need something to deal with the stomach pain issues. Yeah, that makes sense, especially when you look at the side effects to that med... in-freaking-sane.

In a good bad place

It has taken me till now since my short term leave to get my migraines 'settled' down. There is a certain point when I am working where my sleep is so disturbed and the pain is so acute that the pain is constantly aggravated. It is migraine after migraine. And between them is a constant headache from the neck pain... this pain in the neck that radiates up into the base of the scull. And the persistent migraine aura is intense and the vertiog messed up. I think it is too much over stimulation and sleep deprivation. I thought when I was on leave it would immediately improve but it didn't. So I had to get my sleep in line... get it for one and not over sleep for another. I had to ensure I exercised midly so I didn't aggravate the fibromyalgia by doing nothing but not too much to aggravate the migraines. Then add in every other trick from different balms and muscle creams on the head and neck, to ice, to yoga to meditation to different medications at different times to hydration and diet. Everything to get the neck pain under control mainly because it was seriously messing things up and once I got that under control it minimized that baseline tension headache so I had migraine free times of the day. And that is where I am now. And that is a sucess in my book. The best it can be at this point without an effective preventative. Yeah the migraines are still daily, but not always first thing in the morning and I don't wake up with a nasty headache that triggers a migraine quite early. Instead if I don't have a migraine in the morning then I get a migraine in the afternoon which is more normal (excluding hormonal migraines of course).

And I had a damn good routine going on too. Good sleep. Good exercise. Till that neuro effed it up. Now it is all buggered up again. But thankfully the neck pain isn't that bad yet... won't be either until after a long status migraine so if I can get the routine back before then I should be good. But he has made that difficult I can tell you that. I really can't sleep so well when I have a insanely painful migraine... I just stay awake until the wee hours of the morning. I can't just use my triptan it has too many side effects to abuse like that. Using nothing just prolongs the migraine and yes makes the neck hurt and the teeth and the skin. And I'm so tired I don't want to exercise... maybe because I end up oversleeping because I didn't fall asleep till seven am or maybe because of the med he is increasing is making me so groggy.

Then you add in the Bad place... my neuro took his time filling out the short term renewal forms. My insurance company called me twice. So I had to call his office. I still don't know if they have them yet. So I have to call them tommorow. So... I still don't know if it is approved. And that is insanely stressfull. I hate all that crap. And the waiting crap.

Down to the wire

Well my potential return date to work is Oct 14th. So... I hope that neuro fills out my extension because with him changing up my meds like he is I need time.

As recommended I have not been using my tramacet. Which as you might suspect means on the days where I am not using my triptan the migraine is rather unpleasant and enduring. Nothing new in that and since usually painkillers would be most beneficial to get me through work it is easier than usual, but unfortunately when the migraine works its way to acute by bedtime I do have a bit of a problem. A migraine around a 6 or even a 7 taken with a sleeping pill, the sleeping I use sort of dulls the pain a little bit and this helps me sleep just as much as the sleeping pill itself really. But when the pain is at an 8, less so and if it is a 9 or worse, then the sleeping has no dulling effect and unfortunately no effect at all because I'm in too much pain to settle down and sleep. Leads to a lot of insomnia, which when I was working led to sleep deprivation, sleep paralysis and those wicked stretches of daily acute migraines I seem to have started just tempering. What I was doing was taking a painkiller in the evening to bring the pain down a bit first to help me get to sleep when I take my sleeping pill and indeed it was helping me moderate my sleeping cycle a little. Lets just say I'm back at square one. So sleep is going to be a challenge.

So far since I got control of my neck pain before the neuro appointment I have been managing it well. It came back, because of the lack of sleep, and unmanaged migraines... but not badly yet because I'm being careful to manage it. As a result I have had little to no migraines in the morning which is my normal, glad to have at least gotten that stabilized (at least until the sleep thing buggers up again) and this means the migraines usually hit in the early afternoon. I do get morning migraines, when I don't get enough sleep or it is hormonally triggered or if it is in fact a continuation of the previous migraine. But limiting those is the best thing to do, so I have some time to exercise and do things.

I've weeded out my verapamil. And joy for joy it seems to have buggered up my vertigo and my 'normal' migraine aura. My normal migraine aura was diminished by my previous neuros treatment and now, well, wow its coming back in a flashy way. And the vertigo is destabilizing me. I almost fell down. Like really almost fell down from just standing still doing nothing. One minute I was standing, the next I was falling. So... good time to be adding the topamax upping.... but I think I have to email him about that and set up a doctors appointment to get that going.

And I have very little time for these insurance people to make a choice. And if that choice is for me to return... well, hell, he told me not to drive with vertigo so not sure what I'm supposed to do about that. Fly? Walk?

The new neuro appointment was... fine-ish but disturbing

I got through the appointment intact which is good. It was remarkable how similar his recommendations were for me as they were for my younger brother... when our migraine history, gender and age are different, and family ties unknown. So I think he rather has the same sort of recommendation overall. He criticized my previous neuro, but rather harshly I figure. He said he didn't get why my previous neuro put me on Verapamil at all... but I have migraine associated vertigo which is getting worse and a long history of a persistent migraine aura, and combined with other preventatives, why not? Considering I have asthma as well and other beta blocker are a no go and this one is actually recommended for MAV along with such things as Topamax... then well, I get it. But I'm sure the hell am not going to argue about it because neuro's get fussy about that sort of thing and he is keeping me on the topamax and increasing my dosage. I concur with that, so no issues with taking one preventative off the table and increasing the dosage of one that historically 'did something'. Although his idea of increasing it to potentially 400mg does concern me a little since the recommended dosage for migraines is a quarter of that, maybe a little more if you are pushing it... my previous max back in the day was 125. He wants to aim for epilepsy levels, or the minimum mg for it anyway. But, hey, maybe that is good. My brain is nuts and topamax can be good for migraines, MAV and VS. So again not complaining about that. He wants to take me off the SERC which was to treat the vertigo. I mentioned my inability to... well drive and he said then I should not drive. I said that sort of makes it hard to get to work. I think he must have thought I lived in the city and had the ability to take the bus or something. But I don't. And aside from the crippling pain the vertigo and visual snow is getting as crippling. So take away a med that might be able to somewhat treat it in the short term might be tricky if I have to go back to work, but I didn't like that med, it did a real number on my stomach and I don't have to worry about that until I get that call to return to work... then I seriously have to worry about that and a number of other things. Those concerns are fairly minor...

Next... he is a firm believer in LIFESYLE changes. Aren't we all? If they were so damn simple to change when I was so concerned about that survival thing. There is this problem with acute enduring pain that never ends... you seem to sort of not give a damn about healthy living after a while. Then you do for a bit. Then you don't. Then you want to kill yourself. Then you don't. So fickle I know. So damn hard to cope with all that pain. But surely while you are coping with all that pain and managing to hold down a full time job you can also cut the caffeine, smoking and then add in a good half hour of exercise a day? Why not? Everyone else has no problem with those things right? Surely someone crippled by pain and barely managing to get through the work day will also have no problems attaining long term goals... and more than one at a time... because it is just that easy. Well obviously it isn't. One acute migraine at work that I cannot treat because I don't want to 'over medicate' and I really want a  smoke because psychologically it makes me feel better to have it. Yes, there are positive coping strategies to replace smoking... but those are learned behaviours and learning those in the highly strained work environment I am already barely coping with is apparently difficult. Deep breathing doesn't cut it. If I were working and this neuro spouted all this to me it might have literally caused me to tear up. Seriously. Because while working it is That hard to Exist let alone contemplating Exercise for christ sakes. But since I am currently not... I'm game. I'm already doing it on the advice of my shrink. Who I went to see if the first place because I was not coping and want to learn different ways to do so... so obviously I'm game for anything. If he want to add in cutting the caffeine (a trick I've done a time or two before) so be it, that one isn't so hard. And quit smoke? Sure. I want to anyway... much harder to achieve, but I'm game for it. If I have to go back to work all of that may go to hell in a hand basket very, very quickly... but I will aim to please and aim to set a habit of it all. Because it can't hurt. Well the exercise hurts like hell... he apparently does not understand FM that well, but certainly I do, and it hurts quite a bit to do what I am, but minute by minute I will do more.

Next... completely cut out opiates. Now that sounds like I'm hooked on serious painkillers. But I'm not. He means tramacet, which is tramadol plus tylenol and it is my Rescue med... not my primary treatment. But he doesn't believe in rescue meds and firmly believes opiates make pain worse. So... no more of that. Which just leaves me with Maxalt, my abortive which can only be used three times a week, max or you can get a rebound headache from it. And I generally don't even use it that much because of the rather severe side effects. But (and here is something I found disturbing in the info he sent me) I can take my Triptan up to 4 times in a 24 hour period? WTF? That wouldn't even make sense. It wouldn't do anything more than one or max two would. And already I'd be over the max recommended per week. And he is saying this is for every migraine. OR I can take OTC medications like Advil or Tylenol. Which... completely ineffective for one, and secondly, also risk of rebounding. I can't take advil or any such med and tylenol is like candy, it is completely ineffective. At least tramacet was mildly effective. So... I have Maxalt, but no way in hell I'm taking it that often. So... I have pain. Lots and lots of pain. With more exercise. Awesome. Just awesome. That really does suck balls but I guess I will find some way to deal. I'm really not sure why he has that triptan policy. That would cause my migraines to get worse very quickly. In my specific case it would also cause my breathing to get worse significantly quickly. But I'm special that way. I'm almost tempted to try his method just to say I did. But no, there is only so much asthma medication one can take before you end up in the ER because your an idiot and likely still have a bloody migraine.

He also recommends Botox, if the Topamax works for decreasing intensity but not frequency, then Botox can be added to the routine. I hated Botox. I mean all it did was make me numb in one area and move the pain to another, which made it very severe in another area and extremely unpleasant. But I don't entirely disagree with this because it would be more Botox and more shots... getting more areas and so forth and I think that would actually feel really nice on the neck right about now. Seriously really nice. But I still loath the stuff and the reaction I had was very unpleasant. Potentially it could work so I would not rule it out.

Do I disagree with his approach? Not entirely no. Not when I currently have the freedom to do more... or endure more pain I suppose I should say. But I don't know how long that will last because that also depends on him. Lifestyle changes are important and those things are things I want to to... or I want to want. Like I want to be in less pain. I will literally do anything they tell be if it will potentially reduce my pain in the future. If doing all these things at once does the trick then so be it. I can't take Maxalt or OTC meds like he suggests because I know thats not a good idea, but maybe less is better? Who knows? Maybe he will let me take the toradol shots... if I can without hurting my stomach in the process. He has a firm knowledge on migraines. He did the whole explanation thing... like I didn't already know all that, but maybe people sometimes don't figure that out along the way. I would have liked him to express a little more concern over the MAV and persistent migraine aura, which are the most troublesome aspect over and above the pain at this point... but it so happens his treatment of choice overlaps with a treatment said to work with those (even if he didn't agree that verapamil was an option). I could potentially have more severe MAV as a result, which is a concern obviously. I can't see very well these days and it worries me a great deal. But he seems very open to communication and that is a good thing. I think. I mean it could be worse, right? I knew he was going to change my medications. I knew there was a significant chance he was going to take away the painkillers... because doctors are like that these days, even without his solid reasoning. The lifestyle thing isn't unique or new. The treatment isn't spectacular or inspired... it is in fact, back to square one... just more. That is sort of funny. It is the exact same thing recommended so many years ago, just Way more of it. More topamax. More botox. More changes. But I have more pain, more vs and now MAV. If he is flexible and open to communication and up to date on research then we could get somewhere. And starting from square one never hurt anyone. See I'm not freaking out. See how well I'm taking all this. Still not freaking out.

October 2012 Headache & Migraine Disease Blog Carnival: Venting About Migraine

Venting About Migraine Disease: How do you vent your frustrations about living with migraine disease in a way that's helpful to your healing, both emotionally and physically?"


No one can argue that we need to vent once in a while. Get our rant on. I have done it on numerous occasions. We need to because we are under a great deal of strain emotionally and mentally. Holding that inside all the time with no outlet is never a good thing.

Primarily I vent here on my blog. It is a safe place for me. I feel like anyone who reads it chooses to do so and therefore either has migraine, or chronic pain, and therefore can relate to why I am venting. I also vent here because people who might not understand do not know of this place or see it or read it and so I don't feel judged for my honesty. I can get it out of my system. Put it into words. Make it all make sense in my mind. And it makes me feel better to have done so.

I also vent on migraine forums and groups of Facebook because sometimes I want to vent about something specific that other people with the same condition might also have experienced and I just want that support. Just a little support from others who are struggling the same way, who have the same issues, who deal with the same stigma is makes me feel stronger for it. Like we as a group as a whole can get through this.

Currently I also vent with my psychologist because recently for the last few years the Realness of pain has become difficult to think about let alone talk about. It causes me anxiety and distress when I talk about it. Because when I talk about how real my struggle is, well, that is behind the facade and it brings out the emotions behind the facade. And I am always overwhelmed with emotions when I do... because the fact is I am barely surviving and I don't like to face that reality let alone talk about it. So I realized I really should see someone about the fact that I am really not holding my cool very well lately, if that much emotional distress is right under the surface. And I have anxiety about returning to work now that I'm on leave. Again I feel safe telling her anything. Things that would distress others to hear but are normal for people with chronic migraines to think and feel. It is important to my healing that I handle my emotional and mental wellbeing.

We have to talk about all this stuff that bothers us. It is the only way we can manage it and cope better with the pain. We have to get it out in any way that makes us comfortable or in more ways than one if we want. Because if you are like me we don't feel comfortable venting to loved ones because we don't want them to worry, we don't want them to know how much we suffer or how we suffer or the problems we have with coping. Not that we can't do that as well with loved ones we can talk to, because I do that as well. For example my mom reads my blog and I like that she does because then she knows how I really feel... that insight on what is going on in my head that I don't necessarily always say. I think that's great and then we talk later. Communication like that is good. But with my spouse he gets distressed when I 'get real' with him because it worries him that I suffer so much... it means I might not be coping well, and that I might try to commit suicide again, and that scares him to death... so he would prefer to think I'm doing fine mentally and emotionally if not physically. There is only so much realness I want to inflict on him. And when it comes to work situations and so forth... obviously we need to vent about that... the amount of stress, stigma and cruelty that can happen in a workplace when you have a disability is quite vent worthy. And we can vent in a message board or to a therapist and get productive advice on what to do about that situation.

http://www.clinicalpsychiatrynews.com/news/neurology/single-article/visual-snow-may-be-a-distinct-clinical-entity/95de82a8baa1b5b7b8b44d9c9619b255.html

http://www.clinicalpsychiatrynews.com/news/neurology/single-article/visual-snow-may-be-a-distinct-clinical-entity/95de82a8baa1b5b7b8b44d9c9619b255.html

Results showed that in addition to visual snow, nearly all patients reported other visual symptoms, such floaters (73%); persistent visual images (63%); difficulty seeing at night (58%); tiny objects moving on the blue sky (57%); sensitivity to light (54%); trails behind moving objects (48%); bright flashes (44%); and colored swirls, clouds, or waves when their eyes were closed (41%). 
I admit I've had a real fascination with visual snow since I joined a Facebook group of other people with it because I have learned a great deal more about it. I thought it was just a prolonged migraine aura, but it turns out people have visual snow and never have migraines at all. And those of us who do have migraines with aura they call it a 'persistent migraine aura' but really it is visual snow. A stand alone neurological condition that can be co-morbid with migraines, and the co-morbid factor is high for sure... like 50% of people with vs have migraine, but that leaves 50% who do not.

It is hard to treat. I know that from experience. My doctor tried many medications known to treat aura symptoms... and they worked on my aura symptoms, they have been greatly reduced. But not on the VS.

So... apparently I have another comorbid condition. So fibromyalgia is comorbid with migraines which is comorbid with VS and asthma.  fibromyalgia is comorbid with hypothyroidism and IBS and hyermobility syndrome.  All leading back to FM... bloody FM So who treats what is what I want to know. But VS is neurological so you get treated by a neuro... but apparently most of them don't know what to do with their patient with this, or apparently don't know all about VS.

I sort of get how they can be comorbid with migraines. With migraines with aura the visual cortex is getting overstimulated and thus the aura phenomena. Over and over and over again. I think that alone could trigger VS. Especially in someone with FM where their brains are all hyperactive anyway. I have no clue what the trigger event would be otherwise. And I hope studies will show what triggers it on its own. Or what is really going on there. It is a fascinating disease.

With my migraines being chronic and the MAV and the VS it makes me wonder if maybe it is more like epilepsy than we think. This constant storm in that area of the brain that shouldn't be stimulated. Who know?

On a personal note for some reason my vs is getting significantly worse and I have no idea why. But other that all the static, which is stronger than it was. I'm getting a shaky visual field that is making it difficult to look at anything. Even read or computer time is hard for any length of time. Since no one knows a thing about it I can't ask what makes it worse and what can I do to make it diminish a bit.

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...