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You are not your illness?

I always have a bit of a problem with these statements. On the one hand, yes, I don't want to be defined by my illness and the pain is not all that I am by any means. I acknowledge the pain limits who I am... by that I mean a certain level of pain sort of muffles the personality. It does not let you to the surface and that is why a certain level of pain is difficult to mask from loved ones... because they can tell your personality has been dulled around the edges and you are simply not all there. But that is pain and by its nature that is the way it is. No one would be any different it just so happens with chronic pain this happens more often. But I don't define myself as a crippled person, as this person crippled by my illness, as the essence of myself defined by my symptoms. And I would completely agree with this statement fifteen years ago when I fought to ensure my illness did not define me and I fought to endure who I was was not altered by my illness.... this sort of du…

Head Agony | Science News

Head Agony | Science News
"
“They confirm that migraine is a disease of hyperexcitability in the brain,” says Ferrari.
Nerve cells work by transmitting electrical impulses. Normally, the inside of a nerve cell is negatively charged (thanks to a lot of negatively charged chlorine ions) and the outside is positive (from positively charged sodium, calcium and potassium ions). When a nerve cell releases a signaling molecule called a neurotransmitter, channels on the cell next door open up and allow positive ions to rush in. The cell briefly depolarizes — the inside loses its negative charge — and then returns back to its normal state.
Genes that have been linked to migraine all have some role in the firing of nerve cells and this positive-negative ion swap. The gene mutation described in 1996 affected the calcium ion channel. Another DNA variation, described in 2010 in Nature Genetics, inhibits a cell’s ability to clear away the neurotransmitter glutamate after the nerve…

Man, I feel like a cripple

Might be the weather but I feel like a cripple. Sometimes fibromyalgia has a way of making you its bitch. I can tell you some times when it has been intensely painful to have this syndrome... when indeed I felt crippled by the pain alone. When walking became this very problematic struggle to consume inches. Not fun by any means but also not continuous. Also... not predictable. At times it just is. Other times it seems to be a flare up of specific muscle groups... like that year where the tendons in the bottom of my feet were extremely painful and I sort of shuffled everywhere I went. That was an unpleasant year. But it went away. Can't wear girly shoes or flat shoes though or that comes back very quickly... so sneakers it is, with insoles in them... but I like sneakers and I am not the sort of girl who collects shoes so not like I care. So there is all over pain, there is a specific intense flare up in specific muscles (both sides though) and there is 'you have clearly gone o…

Depression and taking off the mask... how I hate admitting it

I have always had troubles admitting to the emotional toll pain has on me. Something about that stoic facade I have gripped onto from years and years ago because some doctors are simply incapable of understanding that pain can cause emotional distress rather than say depression being the sole cause of all our ails. Plus there is this insane desire to not admit to weakness as if struggling with pain is a weakness. Especially when every year it is worse and treatment is never making it better and doctors don't seem to get it... or anything. I did not even like to admit the emotional toll it was having to myself. I liked the denial and the comforting lies I told myself that helped me endure. It is easy to do when pain contorts your perception of time and hazes your memory so very well. I could have a Very Bad time enduring work and the stresses of having my employer threaten my employment or just make me feel guilty or worthless for being so damn ill, such that with all the pain I w…

cortical spreading depression (CSD), might also explain how migraines become chronic

Millions of people who experience an aura before a migraine live with little understanding of the flashing lights, tingling arms, incoherent speech or other symptoms that presage an attack. But a new study led by a University of Utah neurologist shows that these pre-migraine symptoms, caused by a wave of brain activity, may change the way the brain responds.      This wave, called a cortical spreading depression (CSD), might also explain how migraines become chronic in millions of people, according to K.C. Brennan, M.D., Assistant Professor of Neurology at the U of U School of Medicine and senior author on the study.“CSD moves across the brain like a ripple in a pond,” Brennan says. It drives nerve cells to fire uncontrollably, and causes large changes in blood flow. For at least an hour afterward, it changes the way the brain reacts to its environment.  “It’s like turning up the volume in all of the senses.” ....After the CSD passed, they saw larger and sharper sensory responses, and…

Interviewed a new doctor today

So for some time now I have had some dissatisfaction with my general doctor. It is not that he is a horrible doctor it is simply that he never has the time and it just seems like he does not listen all that much. And when I feel rushed I often forget things and then those things just never get mentioned. Which is a problem. However the main reason is that he does not seem to get the magnitude of my pain problem. Yes, he sent me to a neuro for my chronic migraines, which is great and easy. Yes, he has even assisted with some other migraine related medications that have helped and I appriciate the effort.... such as a med for vertigo and my digestive problems and nausea... But overall how he handled me in regards to my work situation does not sit well with me, expecially when it was at its worse and he treated that situation so offhandedly. It was not so casual an experience for me by any means. And this going on short term leave and then back to work, and missing too many days, and eve…

Got long term disability work docs... remembering the horror of it all

Got my long term documentation in the mail for work today. It should be a simple thing. People keep saying that it should be just a fact that I should be on long term leave, given all the other lesser conditions on which people have gotten long term leave in the past, given my state of mind, given the nature of my medical condition, given the amount of pain I am in and even given other symptoms like the vertigo and such. But it is not a simple thing. It is a horrifically complex thing that has very little to do with me and more to do with how my doctor fills out the form and how insurance companies work. And yes that makes me feel very powerless and I suppose it is designed to. I have a lot of anxiety with the process because I have been declined in the past... and I must admit that each time I hoped that my doctors would have my back and save me from the very fact I could not survive in a full-time work environment and therefore save me from myself... that is from that inevitable fut…

yoga determined my back is shot to hell

Since my chronic migraine hell has landed me off work for a bit I've been trying to do yoga daily to compensate... because unfortunately no activity when it comes to fibromyalgia can also cause pain, just like any activity can, just like sitting too long can, or standing too long can... you need some sort of mobility anyway. Mine was walking and yoga, that is until I got too ill from medication side effects.
However, something flared up some serious back pain and I don't think it was the yoga or the walking. I have no idea what it was but both aggravated it and it has been extremely sensitive since. It bothers me when i try to sleep, when walking and when trying to do yoga and when standing up from sitting. I have now sufficiently recovered from my medication side effects to Do activities again, prior to the migraine pain hitting anyway, so today I managed 20 minutes. I know sounds impressive. Trust me it is for FM. It really, really is... and painful. Some of tha…

Avoiding stress during the holiday season with fibromyalgia

Avoiding stress during the holiday season with fibromyalgia

I should have wrote this a little earlier I figure but I've been so blasted with pain I've been non-functional... but here it is! These apply to all chronic pain really and honestly I'd say if you are like me and are a vetran at this chronic pain thing you likely know them all... but always a good reminder.

Merry Christmas and Happy Holidays and such!!! I'm still not done shopping due to the whole crippled by pain thing but I'm getting there.



Good-bye to fluorescent light bulbs?

"based on field-induced polymer electroluminescent (FIPEL) technology, also gives off soft, white light – not the yellowish glint from fluorescents or bluish tinge from LEDs.

“People often complain that fluorescent lights bother their eyes, and the hum from the fluorescent tubes irritates anyone sitting at a desk underneath them,” said David Carroll, the scientist leading the development of this technology at Wake Forest. “The new lights we have created can cure both of those problems and more.” The team uses a nano-engineered polymer matrix to convert the charge into light. This allows the researchers to create an entirely new light bulb – overcoming one of the major barriers in using plastic lights in commercial buildings and homes. The research supporting the technology is described in a study appearing online in advance of publication in the peer-reviewed journal Organic Electronics." -newswise To a degree florescent lights are unpleasant for everyone and in fact cause h…

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…