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 dualistic look at my illness. It could affect my body, but my mind was my own... it would not change. I was still me.

Yet after time and increased symptoms and chronic migraines on top of fibromyalgia and giving up my academic career and trying to just hold onto a job my perspective has changed, because who I was has changed. I had to change because I had to survive. In fact, early on with just fibromyalgia I changed dramatically in order to develop coping strategies for that chronic pain which helped me adapt and get through my Master of Arts. Dramatically changed how I looked at reality, because if I had not, I would not have been able to cope with the pain. Going from a rather cynical and very sarcastic person to a more realistic but humorous person was an active effort on my part to stop seeing things a certain way and to cultivate my more lighter humor that helps me deal with pain, rather than my dark humor which definitely does not. And this is a normal process.... chronic illness will, positively or negatively highlight facets of our personality. So it does change us as we go through that first struggle to cope. Even so.... I saw that as just adapting. Bringing out a different aspect of myself in order to cope. Learning a facade of wellbeing that I would mask myself with because the lie of happiness and humor and goofiness becomes a truth that sinks into you... and when you laugh with others it fools them and you and not focusing on the pain makes it easier to bear.

Then the migraines were added in and became chronic and I had to go into the workforce because I could not think clearly enough to go through my Phd. I hoped for treatment to help and then I would go back to it but... such is life, things got rapidly worse because well, work is work. So years of that increased pain and that constant battering against a person is a little different than just the changes one goes through when initially coping with chronic pain. It fractures a person. Wounds a person. Breaks a person. Of course you see yourself for who you really are... because you see all your strength and all your weakness together as you struggle to survive. How could you not see yourself in your purest form? Raw and exposed. There is nothing I don't know about how I think about pain, my illness, how I react to it, to stimulus, to stress... that I have not learned and thought about and tried to conquer and heal and mend and broken again and held together. I know myself very well. But... knowing all that does not necessarily lead to healing when the wounds keep on happening. It is just this continuous process where the best we can hope for is coping. We learn the tricks on how we can manage ourselves really. Trick ourselves, lie to ourselves, fool our brains into thinking the way we need it to think, distract it in ways that seem odd to others but are necessary to us... whatever works.

But... I am not my illness? Maybe not, but it has created me. Changed me. Made me. And in some ways I really, really am my illness. In some ways I am the person I have always been and have the same interests and general personality traits. However, some traits are there because of my illness. My absentmindedness. My inability to remember names and faces. My short term and even long term memory problems. My notorious clumsiness. People know these traits about me... I know these traits about me... I make jokes about them... but they are my illness. Even the persistent migraine auras have been there so long it is such a normal thing to see things the way I do even if it is so much worse now... such that my perceptions of reality are just different than anyone elses, such that I cannot explain it, but it is the way I perceive reality.... how can I separate such a fundamental thing from who I am? Some symptoms are so ingrained... like the forgetfulness, firbofog, problems with naming objects, people, problems with communications... such that they become part of how people see you and you see yourself. You can't peal all parts of the illness away and find who you are at the core, at essence, without the symptoms of the illness because it affects so many areas of the brain and how it functions.... the cognitive ones a prime example, the senses I know seem like you can easily see they are not normal but still I have no idea what normal perception is anymore, I don't know how it would be to see normally anymore. And how about mood? Our mood is affected by serotonin  being low and with migraines our mood can be a symptom pre-migraine before the aura stage of a migraine... where there can be depression, anxiety, or hypomanic moods. No event to stimulus in the external world caused the mood... the illness caused it... but at times we feel it is us and we respond like it is us, because you can't always tell where it is coming from.

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 has fired, allowing it to accumulate. In June 2011, Ferrari and an international team of researchers described signs of three more rogue genes in Nature Genetics. These, too, are involved in the transmission of signals from cell to cell.
“The story seems to go in the same direction,” Ferrari says. In a migraine-susceptible brain “it’s easier to trigger neuronal activity.”
The idea is also supported by a study published last January in the journal Neurology. Researchers exposed patients suffering a migraine attack to light — a normal stimulus that becomes excruciating during the headache. PET scans of the patients revealed that the light caused the nerves in the occipital cortex of the brain to fire. But when the patients were not experiencing an attack, the light did not have an effect on that part of the brain. Like a drought-stricken forest, the nerves may be easy to ignite, and easy to fuel once they do.
“The fact of the matter is there is plenty of evidence now that the brain of a migraine sufferer is never normal,” says David Dodick, a neurologist at the Mayo Clinic in Scottsdale, Ariz., and president of the American Headache Society. It now appears that a migraine brain exists on edge, quick to set off a headache when the right combination of circumstances comes along. “Networks are active when normally they shouldn’t be,” Dodick says. “The threshold for generating an attack is always just below the surface.” The rabbit hole is always near.
But maybe not forever. Soon migraine sufferers may, like Alice, be able to wake up from the nightmare inside their heads — something Alice’s creator could never do."

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 over your limits and need to be punished' pain.

Right this moment I have an overall flare up that is nasty. I speculate weather but it could be just that I have no been feeling well. A little too much stress. Lack of sleep due to other pain. That sort of thing. I think the chestwall pain is from this flare... certainly the leg pain is.

I have some nasty back pain that I have not decided whether it is a specific muscle flare up that I'm just going to have to endure until it goes away or whether it is a back problem or whether it is something else. My new doctor gave me something for it that does not work at all... but since I speculate the cream she gave me is an anti-inflammatory it would not do anything for FM. Still... just not sure. When I do nothing... it just hurts. When I sleep it hurts like a bitch which is causing problems with my crappy ass sleep. When I walk... it hurts exponentially. That is sort of like a FM thing... I mean when you go for a stroll and you have FM you will feel pain and then it will get worse and then worse and the sharp ache of it will increase rapidly until you can barely walk, but you know if you stop to rest while that will drop the pain down to a tolerable level as you stand up you will either collapse or the pain will just be screaming intense so you might as well just keep inching your way forward no matter how bad it gets until you get to where you are going. I get that sometimes very quickly... but since I have been on Lyrica not As quickly. And that is usually in my hips and knees and feet. But this increases very rapidly until I am hobbled by it. Very intense. Until I stop then it diminishes very quickly. So who the hell knows.

Then there are the migraines. Due to a policy change with my insurance company I cannot get my triptan until I get a form signed by my doctor who is out of town for a week. That unfortunately means untreated migraines. My new doctor, thankfully, permitted me some T3s but they cannot manage the pain or abort a migraine, nor can I use them for the whole time frame as they are a painkiller... best to use them only when the pain is severe and intolerable, to bring it down to within limits. Anyway, this is a problem... not a problem doctors generally care about mind you when it comes to chronic migraines, but a problem nonetheless. Hard to function and sleep when the migraines don't end. Also a problem when the FM is flaring so badly because the neck pain, which is constant from the migraines, has spread into my shoulder and down into my arm. Anyway the arm is just not functioning so well and this is the one that has the nerve issues.

It is a crapload of pain. And given my ability to function and my mobility seem to be rather compromised I am feeling rather crippled. I am amazed at how fast my back pain goes from 2 to 9 on the pain scale. I went out to finish Christmas shopping and it was no time at all before I could barely handle the pain... thankfully I was not out alone or driving or it would have been worse and this combined with the migraines is making me rather hesitant to do so these days.

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 was enduring to just Survive I would magnify all those little bad thoughts into Big Bad Thoughts. But just for a small time frame. Never too long. The extreme intense pain passes and it is back to just surviving and small bad thoughts. And I would let myself forget how bad it was. Over and over again I would just... let it go, because holding onto such things is not good right? I would rationalize that everyone with that much pain enduring full time work would at times feel that horrid deep dark depression that comes with such horrid intense pain episodes. It is only natural. In fact, it is part of a migraine at times. Wait it out and then just forget about it. Until thoughts becomes actions and you can't afford to lie to yourself about how powerful or frequent such things are... or how triggers like employers causing such stress can cause such profound emotion, because my day to day survival is difficult and beneath the facade it is strained and I am so very tired... such that any little thing can be quite devastating. Even though all my coping tricks to survive day to day worked fairly well in pushing back depression... because I knew how insidious it can be and how thoughts can curl up inside your brain and twist around in there... and I would not let them. But some intense pain... some additional stress and all bets are off.

I get that for the last couple of years the combination of a lack of hope, disillusionment with doctors and the inability to believe I can cope with pain during work for a long period has strained me emotionally such that my equilibrium was thrown off. My threshold for stress was thrown off. I lost my will to fight with my employer and doctors because I expected things would not go well for me because things did not go well for me. And I admit I was quite aware on some level that I was depressed because either I did not care at all about anything or the smallest things would trigger the most intense reaction. But I had suffered a bit of a trauma and I thought eventually I would shake it off and if I did not... did it really matter? Clearly I decided it mattered enough to see a psychologist because I was beyond the shock of it all to at least try and fight a little even if I did not honestly think it was going to make a difference. Which is what I am still doing.

So I am getting my doctor to fill our my long term disability forms and my psychologist believes it is a good idea to mention the depression because it might help with the claim. Because no one gets chronic pain apparently but they get depression. And the depression I have is directly correlated to the pain. I loath that by the way. I said one day that I did not understand why I could have such intense reactions to such small things... like my neuros rather brief and unhelpful email reply to my carefully structured email. She said it made perfect sense because of the chronic pain and the lack of sleep my serotonin is rather low and it takes very little to make it plummet. I loath it because it is irrational. You can't out-think it. I remember when I was younger and had early FM I was depressed about it and not coping with the pain... I got out of that depression with some self cognitive therapy and that is how I try not to sink into a serious depression now on a everyday basis, pain corrodes that a little but there is still a framework for it to work. Anyway, migraines and acute pain can cause a depression that is profound, rapid and irrational. It is not the same thing at all. When the pain is managed it is a bit better. When I'm not working it is a bit better, which is why I fear work. It is clearly worse now, after my suicide attempt than it was before... because before I had these little blips and then pretended they did not happen and pretended I was fine and I had this sliver of hope and I thought if I just fought through the pain there would be a light at the end of the tunnel and I would do this repetitively until I was forced to go on short term leave and then start all over again forgetting how hard it had been the previous time... and after I realized my doctors could not care less, there was no hope, I would always fight this pain and it would always be this way and I could not even trust myself in one of those darkest moments of pain. And I can admit it makes a huge difference in how I see things. And I said to my doctor that my psychologist said I was depressed and she would be sending a letter to go along with my claim to explain the details. And he of course... recommended a anti-depressant. And then asked if I thought I would be ready to return to work on some sort of accommodation... I must say, I think he should have thought about that before saying it. But he said it. To my credit at least I said... no, don't think that would be such a grand idea at this point in time. When in fact my anxiety actually went quite high at the very thought and then that sort of... dread. But clearly... he does not freaking get it.

Point being I get how I got to this point and fully appreciate the irony of it as well. And I am looking for a new doctor who perhaps comprehends the nature of chronic pain and how it can cause depression. But at the same time I hate admitting it out loud. Like saying it gives it power... power I denied it before by simply... denying it. Obviously denying it did not work. Obviously suppressing emotion and just surviving day to day eventually breaks a person... but after they are broken, what breaks them even more is having doctors who don't get it at all and don't put any effort in helping that person heal a little. But actually accepting the label and discussing it and so forth seems to just bring it out more... seems to give the pain more power. I want at least the illusion of strength and to wear a stoic facade. So I understand the nature of pain, migraines and brain chemistry and how it all came to be. I understand my positive coping strategies and how to avoid negative thoughts. And I understand nothing is simple. I understand I have to get my current doctor to understand to some degree the seriousness of the situation so he can fill out those forms properly and I understand that he does not. But admitting to be depressed, even if it is not a continuous depression but more dependent on pain levels and external stressors, just seems like I am ripping off that mask I always wear and exposing something that should be always hidden so that it does not consume me.

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 a decreased ability to adapt to stimuli.“The CSD wave causes the brain to react differently,” says Brennan. “Every sense is heightened, which is remarkably like what patients describe during their migraines.”The changes – or sensory plasticity – identified by Brennan and colleagues can last long after CSD passes. If repeated over time, they might help explain why some migraines become chronic, according to Brennan.Migraine Auras 'Turn Up the Volume'of the Senses

Makes sense. Wonder what it means when you have persistent migraine auras then? My brain is on fire!

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 eventually back on short term, and then back to work and missing too many days... over and over again is hellish because workplaces really don't like that and that makes my life hell, worse than working itself does. Point being, at the core of the problem I figure is not really him... I'm sure he is perfectly fine at his job and insanely busy in fact... I think the problem is that we do not mesh well and we do not communicate well and I often feel ackward even talking to him now. So what is the point then?

However, there are so few doctors around here that are available to take patients. So I decided to ask my common law spouses doctor if she would consider taking me on, given we are 'spouses' even though she is not taking on new patients. And I asked this because I already know she is a good doctor... she has to be to get my bf to actually talk about anything related to his health and say more than two words. He hates the doctors offices. Hates, hates, hates. And she has greatly helped him for his gastroparesis, IBS, arthritis on his toe which in fact needed surgery, and because she was following up so well for his gastroparesis she did a CAT scan that happened to catch his stage one kidney cancer that had no symptoms... so I'm rather fond of her for all of that. Still communication between people is important so we schedualed a meeting and greet, which is always a little indimidating because you never know how a doctor is going to take being presented with a patient with complex chronic pain conditions. We are tricky and doctors don't like tricky. She was great though. She really listened to what I was saying about my current treatments and medications. She is wary of opiates and the potential of over using but will use them when necessary and that is a philosophy I like to see in a doctor.... it is the same I have when using them, which obviously I currently am not anyway. She said my pain is a complex situation with the FM and the migraines and honestly the way she expressed it startled me a little because I am so used to the situation being minimized and the FM being completely disregarded. She asked a lot about the FM actually. She said she was not sure she would recommend to send me to a new neuro given all the medications I have tried and that she would be more inclined to send me to a pain specialist clinic... and that astonished me. Because that would address both conditions and that would be, wow, revolutionary.

Problem was I did go see her with a migraine and near the end there I started fumbling my words a bit. And forgetting stuff... even though I brought my book with all my meds in it I managed to forget to tell her some. Dang it. Still, she sent me for blood work and to come back in a month for a full physical to get things going. Which is a good start, right? Get all the blood work and a physical and a hystory. She did everything right there. And a very good overall conversation. As much of on we could have given my history is obviously extensive. I liked her. She did listen well. I think as an overall docotr she will be Better. For migraines... well, who knows, hard to say that always depends on the so called experts. But I need someone to look at all my need, not just my refills and not just my migraines and their symptoms. But the whole picture.

She gave me a small script for T3, which are mild but she thought I would have something to help with pain reduction if needed... two at most per day. And she gave me something for my back pain, which hoepfully will help... but not sure it will, I have tried a few things so far and it seems rather consistently there for the long haul.

I still need to see my other doc to fill out the long term forms because he has known me long enough to do so... but after that... I'm done.

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 future moment when I knew there was no hope and I could no longer handle such an existence. But they did not and that moment arrived. And when i survived my suicide by happenchance, well, then I got declined by long term again... and that... that was a brutal shot that shattered any small fraction of hope I had left in me. I thought no wonder they were not surprised by my suicide attempt... it must not be odd at all, they make it like they expect it... like they give you permission by the very fact they don't give a damn. I had not been disillusioned by my doctor or neuro until that point there. Enduring without hope I found out is a rather difficult thing... it isn't the same. It is like automatic pilot. You do the dance because you know the moves, but you can't hear the music. Even a made up hope that you create yourself, where you just fool yourself into believing it exists on which I had survived for years and years... likely because I intentionally put aside all the nasty things my employer put me through, worked for me for a very long time. Despite all evidence that my pain was going to be the same, that medication was not working... I made up hopes to get me through. Because we all have the will to survive. We can create lies and Believe them if we have to. But then i couldn't anymore. And that was really tricky.

You can't believe in the little lies that get you through the moment, the hour, the day, the week and the month... then how the hell are you going to want to survive? How are you going to be anything but numb or at best ambivalent to your own survival? And that is what I was for quite some time being thrust back to work... knowing they would not compromise to help me survive, damn, they just wanted to be rid of me but at least I no longer cared about all the criticisms because what did they matter anyway in the scheme of things? I was there and that is what they wanted, what more could they ask for? What more could they demand of me? Suffer more? Bleed more? Well, they demanded I miss less work, but I could not do that, no matter how much I tried. It made me so damn angry that they almost killed me and did not give a damn... likely did not even acknowledge their role in it... were likely too damn oblivious to it. My role was clear. It was simply to endure the suffering forever with no relief. And, yes, I was angry after a time but that was better than numb. Not that my anger mattered except it makes you want to survive to just spite others. But beyond the anger was this profound realization that within the core of my essence I was trembling... holding in this suffering that could never be expressed, that always had to be masked and was just barely hidden. Barely even concealed anymore. I used to be able to hide my pain so effectively, at least when it was not extremely acute or the symptoms were not obvious... but I could not do that anymore. It was like even facing the truth about my reality would just fill me with intense despair such that I could not even acknowledge it... but obviously it occurs. People even would ask me how I was doing and if they were sincere I would tear up and have problems answering... just too much pain in the fact that I was not doing well and had no hope of ever doing well and had no idea how I would be able to cope with that for the long term. I had some anxiety thinking about the future that I never had before because I knew I was not capable of coping with that level of pain at work for an extended period of time and I feared myself and how I would eventually respond to that knowledge... eventually. Who knew how long I would endure again. You want to fight the good fight but I had no fight left in me... so I was just coasting as it was. I knew the pain ruled every moment of my life. Working takes a lot of concentration, energy and effort and the pain rather gets aggravated by that... there is no life left after that. I was like a boat on extreme stormy seas preying the a rogue wave would not come along and swamp me... but knowing it was coming, just not knowing when. When would the pain consume all reason? A few sleepless nights. Some extra stress at work. One thought... one moment. So don't think... never think about it... just endure it... just survive and maybe that wave will never come. No, I knew I could not survive a long period of time and was desperate to think of alternative work environments... anything, everything.

So when I had a chat with my new manager who was a very nice lady and I acknowledged the fact I should apply for leave again... because even that casual conversation had me blinking back tears. So I did and here I am. This time I decided to see a therapist which made a lot of sense because when I had hope I could pretend to cope in numerous ways... some very effective ways, but yes, there were always emotional consequences to unmanaged pain like that, especially over such a long duration. Clearly though I need to deal with those emotional consequences, this new anxiety and find ways to deal with the suffering even if the pain remains unmanaged. Obviously. Acute pain makes my moods erratic in ways I'd rather wish they were not.

To say seeing this documentation is stressful is an understatement in the extreme. I was I'd say very anxious to see it. I have not started to fill it out yet, but I will tomorrow and then I will have to make a doctor appointment to have him to fill out his part... and 'hope' he fills his part out completely. I get that at least my therapist is on my side, but... I just have no faith in this system and am terrified of it all. I just really am not ready to face the consequences of being denied. I mean it seems so simple. So simple. I'd just return to work like I never left right? Except I'm not being treated for vertigo anymore in any way so would they even let me return to the branch I was transferred to? Part of me wants to return to work because I Should work... I should pull my weight and so forth. But part of me is knows how much worse the pain will be and it is bad enough as it is. And that part of me knows it does not matter what I think, or anyone thinks, it is impossible to accomplish in the long term. Or even the short term considering how much work I miss. But the long term is what I fear because I'm not as strong as I was, when I had my make belief hope and pretended one day the pain would be less than it is and that I could have at least some sort of a normal life... illusions. Forcing myself to keep those illusions will be the death of me and if I want to survive I need to find a different way... I just need to figure out that different way. Damned if they make it easy though.

I know all that sounds depressing and really I'm not that depressed most of the time... or even in the last couple of years. But I clearly am when I'm in a lot of pain which is an issue. And, yeah, clearly my confidence in my ability to cope is rather damaged. They should tell that to chronic pain patients who have survived suicide... 'never walk near cliffs... it is too tempting'... because we know what we are capable of rather than just the bad thoughts that occur in many of us when we are in such constant pain. When thoughts turn to actions... you fear yourself a bit. But I suppose that is a good thing in a sense to fear that. I fear work for that reason and I should not because eventually I will have to deal with the pain or the suffering it causes anyway... even if as I said, the pain never gets better, and if that is the case, I need to find a way to survive and I don't think that will ever be with my current employer or occupation, long term, but I wish it to be something. Anyway I loath these documents. I loath how they made me feel. How they make me remember what I used to feel. I wish I bloody well did not have to deal with it, but that clearly is not an option.

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 that was a bit of strength building exercises, or what I would call that anyway (holding my arms up is essentially strength building but anyway it was not yoga, more intense stuff). Several poses aggravated my back pain, but then I Feel pain in several areas when I do these poses so not unusual.
This pose made me realize just how bad my back really is. It is supposed to help with back pain. (the other one I know that is supposed to help made it feel way worse) I literally could not even get close to doing this. The start of this you are on your elbows then you raise up on your arms and arch back. I was in an insane amount of pain on my elbows... no way in hell could I get up on my arms. And partially this is why I have troubles sleeping... I sleep on my stomach and just lying down I feel a lot of pain, so I have been pulling on knee up to my chest to feel less pain.
So... not sure if this is an FM flare thing or a back pain thing. It has been six months now... so that counts in my books as long enough to mention to the doctor since it is not going away on its own and is compromising my ability to function. So yet another freaking doctor appointment.

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 headaches and fatigue in the general population... also there have been studies that show they actually increase overall sick days. In regards to migraines, well they are worse, but would these be better? Not sure. "The device is made of three layers of moldable white-emitting polymer blended with a small amount of nanomaterials that glow when stimulated to create bright and perfectly white light similar to the sunlight human eyes prefer. However, it can be made in any color and any shape – from 2x4-foot sheets to replace office lighting to a bulb with Edison sockets to fit household lamps and light fixtures." -  I mean I have a strong loathing for sunlight as well. Just saying. But maybe tinted ones. lol. Just getting rid of the hum flicker and unpleasant hue might be an improvement really.

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.

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...