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Showing posts from November, 2012

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 …

New somecard post

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 remembe…

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…

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 ab…

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 b…

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…

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 sho…

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 …

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 wate…

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…

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 …

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…

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 thi…

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 no…

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 we…

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,…

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’ pe…

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 …