Migraine is associated with variations in structure of brain arteries

Migraine is associated with variations in structure of brain arteries

A new study done by researchers at the Perelman School of Medicine at the University of Pennsylvania have found that the net of arteries supplying blood to the brain is more likely to be incomplete in people who have migraines. Say what? That is what I said. Essentially, "Variations in arterial anatomy lead to asymmetries in cerebral blood flow that might contribute to the process triggering migraines."



"The arterial supply of blood to the brain is protected by a series of connections between the major arteries, termed the "circle of Willis" after the English physician who first described it in the 17th century. People with migraine, particularly migraine with aura, are more likely to be missing components of the circle of Willis."

 There was once the theory we are all familiar with that migraines were caused by dilation of blood vessels in the head... but more recent studies have shown it is attributed to abnormal neuronal signals.  Now this study, which appears in PLOS ONE, suggests blood vessels have a different role in the game... these structural alterations of the blood supply to the brain itself may increase "susceptibility to changes in cerebral blood flow, contributing to the abnormal neuronal activity that starts migraine."



"People with migraine actually have differences in the structure of their blood vessels - this is something you are born with," said the study's lead author, Brett Cucchiara, MD, Associate Professor of Neurology. "These differences seem to be associated with changes in blood flow in the brain, and it's possible that these changes may trigger migraine, which may explain why some people, for instance, notice that dehydration triggers their headaches."
 The study involved 170 people divided into three groups: a control group with no headaches, those with migraine with aura and those with migraine without aura. The researchers found that an incomplete Willis was more common in the group with migraine with aura (73%) and the migraine without aura (67%) compared to the control group (51%). They used magnetic resonance angiography to determine blood vessel stricture and a noninvasive magnetic resonance imaging method called Arterial spin labeling (ASL) developed at the University of Pennsylvania to measure changed in the cerebral blood flow.


"Abnormalities in both the circle of Willis and blood flow were most prominent in the back of the brain, where the visual cortex is located. This may help explain why the most common migraine auras consist of visual symptoms such as seeing distortions, spots, or wavy lines," said the study's senior author, John Detre, MD, Professor of Neurology and Radiology.


Dyed my hair and also I need a keeper

I dyed my hair today... and it took a long time to choose This day. I had to choose a day where I did not wake up with a migraine and also was not cooking hot such that the smell of the stuff would make me want to vomit off the get go. Unfortunately it is a migraine trigger so it isn't a fun venture. But I got it done. Takes too boxes at the length and thickness I have going on right now. But I just don't want to get it cut. Well I really do... it is too damn hot to have it this long but I don't want to Pay to have it cut. And I have the two boxes handy... so there you go. However, migraines being such as they are and my gimpy hand being such as it is... I never seem to do a good job a dying my hair. I mean the pictures look fine but a close inspection and there are some interesting highlights of my own color in there which is brown and, er, white... I'm just going to pretend that was intentional and leave it at that.
Nice side view here to see how damn long it is.

It is almost dry here and it is a sort of a auburn color.
 Anyway the dye did trigger a migraine but I was on my way to one anyway... but the smell of the stuff Lingers forever. So that was not fun all day on the stomach. Or now. Even though I washed the hell out of it and had a shower.

So I also had an appointment with a nurse for my depo shot that I decided on a whim to drive myself to... which I decided to do because I need my mom to drive me to my doc to pay for a form crap and don't want to abuse the fact I need someone to drive me Everywhere. And this is in town, so i thought I can do this, right? Sometimes you forget how much it sucks to drive with a migraine. I drove fine, aside from the fact the vertigo did kick in and it made things a little wonky.

I get there I go in and the nurse calls me and asks for the depo vial. Well... because I had a migraine and was all spiny I forgot I Needed to get that first. Totally zoned right out. So I say, I will be Right back. I go over to the pharmacy, which thankfully is right in the same wee mall and order the damn depo. While I am waiting I realize that nice short drive really had kicked in the vertigo because I cannot even stand without jerking every couple of seconds as the ground lurches, like I am drunk. Not extreme thankfully, like the ground is falling away from me... but like it is unstable and I need to adjust every second. I didn't like that for sure because forgetting the depo and then the whole vertigo thing And the migraine really kicking in all signs I really need to get home.

I get the depo go back and get my shot. I get back in my car and drive back home and this migraine is really making itself known now. It really does not like the whole motion thing at all. I get to my driveway and have to back in. Not all the way... because I have hit the house before so my spouse drives it back for me, but part of the way. I realize I can't seem to do this. I keep going at the wrong angle, or can't determine how close I am to our lawn or the neighbours driveway and keep adjusting and then keep going at the wrong angle... did this at least fifteen times. Finally I get out and realize I am completely in our driveway so it was just my perception, but at least I got it straight.

I go to the front of the house and turn the knob.

It is locked. Of course it is. I came out the back. I get my key out to unlock it.

It doesn't fit in the lock. This puzzles me a great deal. So I keep trying.

I realize that isn't my house key. I look at the key closely. I have No idea what that key is actually for. I recognize it. Have no idea what it is for.

Fine. I go in the back door, which I should have in the first place. And take my migraine abortive.

End of story. And this is clearly why I need a keeper. And why I should not drive. The migraine, the auras and the vertigo all kick in and my brain shuts down... I get confused about space and then just confused. I have no idea why keys and locks puzzle me so or why I keep trying the wrong key in the same lock, but I have done this before. I'm still not sure what that key is for to be honest.. my spouse thinks it might be a work key, in which case I should not even have it.

Persistent #migraine #aura fun






This is my migraine with aura self-portrait. Yeah, fun with camera day.

Visual auras are an amazing, fantastic, insane and distorting phenomena that I wish I could capture with a camera. I get so many of them that it would be awesome if I could take a snapshot of each one and say... this is what I tend to get.  And then even the random spectacularly weird ones because they are so random and spectacular.

I do get the Visual snow...
That is a 24/7 sort of thing... that gets worse at night or poor lighting and definitely with lack of sleep.



And visual snow often comes with these sorts of things:

This picture is a combo... floaters, which everybody is likely familiar with but people with VS seem to statistically get a lot of, which is odd since it is an eye phenomena and not neurological. I get them for sure but have no idea if it is more than usual... I just ignore the damn things. The second one are those bright specs of light that dance in the blue sky, or a white wall, or white anything... and it is also a phenomena some people can see but it is quite vibrant in people with VS... so billions of bright tiny specs of light. It is weird I will say that, but also an eye thing called blue field entoptic phenomenon.


This is a good picture to give an example of what someone who sees Halos would see on any light source, including the moon... or if they are inside a bright window, or at night all signs and headlights and so forth. All sources of light have this fuzzy halo. It actually would make the edges of the moon indistict and anything in front of it or around it, and it can be hazier. Anyway this is fairly common with people with VS, not everyone but some... also a persistent migraine aura. This is a frequent persistent migraine aura of mine. If I get it, it will stick around all day, maybe two days. 


Another common VS effect is startburts... this stretching out of light... so often with headlights and streetlights and so forth. I get this a lot at night, often with halos. 

A very common VS effect is Trailers... this echo of motion. They can be short or long echos too. And I can actually get them in color, although generally they are like most auras and are negative or positive echos of images. I get them in blue for some reason a lot of the time. Ghosting seems to be similar but not quite... since it is your whole damn visual field that echoes... so when you look away the whole room will echo, or for me it does. Whereas with a trailer it is actual movement in a stationary enviroment.



I get some other distortions that I believe are related to the VS but I'm not sure. One is this heatwave effect... so like the distortion you would see with heat but your whole vision does it. Or your vision flickers. Or blinks out momentarily. Those are fairly rare and when the VS is bad so that is why I believe there is a correlation there. Another is a pulsing in the air... particularly bad in bright environments... I can see the air moving and pulsing with bright shades of white usually but sometimes other colors and this I assume is a persistent migraine aura, and a common one.

Now... actual auras... like scintillating scotomas can happen before a migraine or just randomly or when i go out into a bright sunlight enviroment. They can be the sort that is in one eye progresses over the hour slowly and takes over the vision bit by bit and then passes. Or just a bright arch of scintillations... lots of multicolored sparkles that stays there for quite some time in both eyes. Or it can be a bright vortex in the middle of my vision the starts small and expands and contorts... generally in whites and blues, like a bruise I guess. So here are some examples of that sort of aura.

   Post : scintillating scotoma migraineauras Videos Check out this post to see some videos on this aura.








And last but not least would be the fact that I have an aura... or issue with my persistent migraine auras where I look at an object and the straight lines warp and twist.  So the line of a door wobbles... looks like it is moving if I'm not looking at it directly... so when I do look at it, then I see that the line of the door is just not staying straight. Same with books and shelves. Lines and patterns. They all twist and wobble. Obviously made worse by the VS, which is this static of dots which always move in the background or that pulsing in the air which is also creating movement... so focusing on things with this additional contortion just makes it worse... in fact my eyes don't Want to focus on things when they are that bad, they shift away, or unfocus or can't focus right. Or the object seems to shimmer or warp more.

So there are a lot of visual phenomena possible with visual snow and persistent migraine auras. Not even sure I covered all the ones I get because there are so damn many, but I think I got the basics down anyway and some of the distorting ones. It can obviously cause issues with visual acuity in bright environments and dark ones.

Also I should mention vertigo can be an added complication into this mix. You can perceive vertigo. For example when you are driving and stop... you may perceive motion still on the road... like the road is still moving. You may get out of the car and still see the sidewalk moving. It may begin to distort you perception of space... making things feel closer or farther than they should be, or Too 3D. It may make it hard to track motion with your eyes, giving it an almost trailer feel because your eyes are not tracking right. And there is this thing I get where an aura mixes with the vertigo... so traveling on the highway and stop... and I see billions of particles flying past the window like I'm going at warp speed through space, weirdest damn thing... like I am seeing my feeling of vertigo.

Read more about Visual snow here: Visual Snow: What is this neurological disorder all about?
Read more about VS and persistent migraine aura experience in this post Migraines messing with my mind
Read more about VS and phenomena associated with it in this post: Visual Snow- Persistent aura without infarction
Read more about aura in general found-awesome-break-down-of-migraine.post

Help me manage the pain and I will work on the suffering. That is what I would like. Is that so much to ask for?






There are times I wish I had an actual painkiller that worked. Like a real painkiller they give to people in pain. Like an opiate. Yeah, I said it. An opiate. I'm not talking morphine. I've never had actual morphine. I'm sure it is nice and all but I think it might be excessive in my case. But I am actually talking pain relief and management. Like tramadol which is often recommended for use with FM although I would not need it for FM. Perhaps it would help with exercise and that would be beneficial but I am thinking more along the lines of being able to function with chronic migraines, a rescue medication that helps and quality of life. That sort of thing.

If I could take my triptan every day, or twice a day, and if that did not cause a rebound headache or have horrible side effects or actually worked every times... then that might actually work for daily management of migraines in my case. But clearly that is not something I can do. I can only take them three times a day. And they do not abort every migraine even when I do take them on those days. And the side effects are not always great for me if I keep taking them and I am not talking rebound. So what about the other four times a week? Assuming we ignore the fact that I very well deal with migraines on those three days when the migraine comes Back after being treated and still deal with it anyway. But ignoring that... still four days with nothing. So not even 50%. Actually less than that by quite a bit. Not even 75% of migraines actually treated. That is a lot of pain. A lot of acute pain to be supposedly functioning through.

And so I take T3s. One a day three times a week. Do you have any idea how effective One T3 is on an acute migraine? Pretty damn ineffective. Better than a Tylenol. So that is something. Right? Better than is better than nothing, right? When you are in acute pain all day it is better than nothing? A teeny bit of dulling in the pain for a few hours is better than no dulling of the pain. Yeah. Awesome. I could take more though right? No... no... no. That would cause a rebound. That would be overusing them clearly. Bad idea that. And then I would get No T3s. But do I want to use more of them? Of course I bloody well do. As ineffective as they bloody well are... I cannot function with the level of pain I am in. I need to find a way to Function but I cannot think and I cannot even move at times and it gets worse and worse until I cannot Sleep. This is not a good thing by any means because then I have a migraine lasting days and the triptan will not work on Its day because the migraine is on day two or three by then and well beyond the point of a triptan working.

So yeah I would like an actually effective rescue medication to take that actually works.

And then I remember that neuros and doctors are asshats when it comes to opiates and I would have to deal with That. I would have some actual pain relief and it actually might help me manage the migraines better... but then I would get them start thinking idiotic stupid opiate thoughts like 'you are getting rebound headaches' and 'the opiates are making your migraines worse' because they would forget I had no quality of life Before they began treating me with them and they would just believe somehow that painkillers make things worse even though things were already as bad as they could get and I just needed some pain control to survive at this point of as bad as it could get... because the medications to prevent this were not preventing it... and somehow people need to function and exist with this pain. And I think somewhere along the line they forget this. They forget they have to manage the pain in order to figure out how to manage the pain. You can't just say 'figure out how to deal with the suffering' and never treat the pain. You have to do a little bit of both. Help me manage the pain and I will work on the suffering. That is what I would like. Is that so much to ask for?

What the hell is functional? Damn insruance company ruined my already depressed mood

I cannot even grasp the meaning of functional anymore. It is beyond me. I am in agony right now as I write this. Too much pain to sleep and have been immobile all day. Unable to function. Unable to do anything because of the pain and the auras. Is that the line I wonder? That I was incapacitated all day and even now I am unable to sleep because the pain is too acute and I cannot lie down because the pain in my head hurts too much to touch the pillow? Is that the line and anything below that is some gray area doctors and insurance companies make up when it suits them? I mean how bad is bad? How much pain do you have to be in for someone to say you cannot function at a job? How much symptoms do you have to have? How safe is it for you to be driving even?

My long term ends at the end of the year. My insurance company says for it to continue it has to be demonstrated that not only can I not do my job but not A job. What difference is there? If I called in sick way too many times to the job I had how would that be any different for any other job? If I have aphasia with one job how would that be different with another? If I have troubles thinking through pain and made all these little errors that I could never find in one job then what makes you think I would not do that in another... possibly a lot more depending on the type of job to be honest. If I have problems with florescent lights and light in general... what sort of job doesn't have that? If I had problems with Pain and then sleep deprivation and then bouts of depression from just working... how would that be resolved? How would I not have suicidal thoughts from the pain, sleep deprivation and bouts of depression? And if I had five short term leaves of absence from my job in seven years (if not more, I know it was five for sure, counting the suicide attempt)... how is that considered functional and how would that work at any other job... along with all those sick days... employers frown on both.

You see the problem isn't Can I do another job. Of course I Can. Some would be worse by far of course. Some would be mildly better. But the fact remains the Migraines would be the same for All of them. And the Pain would not be controlled for Any of them. Nor the aura symptoms which really muck things up. Or the vertigo which really mucks things up. And the auras and the vertigo... makes my driving risky business indeed. So of course the Situation is exactly the same... if I can't do my job, I won't be able to do any job. The same problem is there. Unless something is done about the problem I'm screwed.

So it was a seriously depressing conversation to me because I know insurance companies look at it this way and I know they rarely for some reason continue disability. I know this and it doesn't matter that they cannot comprehend that I cannot function. I wish they could. I wish they and many more people could comprehend how functionally screwed I am on so many levels. But they can't and it doesn't matter anyway. Because I am also screwed on a financial level. Do I want them to continue my disability... yes, I do. It is barely sufficient for me to survive on... but if I figure out a way... I will do it. And maybe it will give me the Time to find alternatives. Or get treatment and then have Options. And it would calm this depression and anxiety I have about working for now so I can find those solutions. Instead I know they will decline it and I will have more anxiety, depression and fear about working. It is my survival at stake here... but they don't take pain that seriously. Obviously I know different. But I have no choices. I desperately need some choices.

So when I get declined? What is that definition of functional? You are good to suffer immensely at another job that will cause the same problems for you, possibly causing you to want to wish you were dead... but we think that is all good as long as we don't have to pay you, so have fun with that.

Seems close to what a doctors definition of functional is. Well you have to preventive that works currently, but you have triptans... so you're fine to work and maybe the neuro will help in a year when you see him. And that happens over and over again.


Heart rate variability with fibromyalgia study

Objective: The goal of this systematic literature review is to determine whether there are differences and similarities in heart rate variability (HRV) between adult patients with Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS), and healthy pain-free control subjects.
Methods: To obtain relevant articles, PubMed and Web of Knowledge were searched for case–control studies. Selection of the literature was based on selection criteria ascertaining studies with adult human patient groups comparing HRV. Risk of bias and levels of evidence were determined.
Results: Sixteen case–control studies were included, 10 comparing FM patients to controls and 6 comparing CFS patients to controls. Methodological quality was moderate to good. Both time domain and frequency domain measurements were used. The majority of the researchers observed lower HRV in FM patients compared to healthy control persons, as well as increased sympathetic activity and a blunted autonomic response to stressors. Resistance training improved HRV in FM patients. In CFS patients HRV was only reduced during sleep.
Conclusion: FM patients show more HRV aberrances and indices of increased sympathetic activity. Increased sympathetic activity is only present in CFS patients at night. Since direct comparisons are lacking and some confounders have to be taken into account, further research is warranted. The role of pain and causality can be subject of further research, as well as therapy studies directed to reduced HRV. Heart rate variability in patients with fibromyalgia and patients with chronic fatigue syndrome: A systematic review
Well my heart rate variability is definitely odd. Does some wonky things too. Interesting study though and makes sense given the sympathetic nervous system involvement. Also intriguing that resistance training improved this factor.

My brain is not agreeing with me at all: Frustrated beyond belief with #migraines and #fibrofog

I'm on a long term leave from work but this will only last till the end of the year. I really doubt if it will be continued after that if I understand the insurance company correctly or really if you know how insurance companies Are. If they deem me capable of returning to work then my employer will offer me some random position which I will have to take or I can also choose to take severance pay (which seems like a sucky alternative).

So either I find alternative employment I Can function at or I get back into a functioning state. The first option can be something that just pays sufficiently. But I have to be capable of being presence and able to work either way. Or at home work if I can find something I am capable of doing that pays that barely sufficient amount, which for online work is harder than you think. I got bills to pay. Had two decent incomes... so need to have one sufficient income to replace my decent income. Or I become functional in the basic sense of the work... able to get to work, able to work full time, able to endure the pain, able to not miss too much work...

And I am looking and I am trying out small things online. Signing up for sites that have job postings. Doing skill tests. Seeing what is available. Doing more in-depth tests to test my skills to see if more opportunities come up.

What I am finding is that I cannot function. I get a migraine a few hours after I get up. First thing after getting up I am extremely groggy from the Lyrica. I can't even think straight. Then the migraine kicks in. If I treat it I'll likely be so damn dopey and sleeping I will not be able to think straight if my life depended on it and it might not even kill the migraine... I might want a four hour nap though. If it is a non-treatment day then the migraine just gets worse and worse. The fatigue gets the way a lot and that again has to be the damn Lyrica but it is just this heavy fatigue and brain fog... and a migraine. I can't think straight at all. Nothing gets done. What does get tried is minimal and unimpressive.

I fear I cannot function. I cannot think straight. I cannot reason properly. I just muddle through things.

Except skill tests on language. Except for writing of course. And writing pays very little. If I could find a way to make writing pay... then I'd be set.

The point is the pain levels have been high due to the storms. Then lack of sleep. Then another blood storm. And I cannot control these things. And with all the fatigue and mental grogginess. It is very discouraging that I may not be able to find a solution to my problem in time or at all. Or ever. And I need to work. We cannot live on one income or permanent disability. It is making me depressed that I can't can't find any solution that works. And I would be the cause of us being unable to pay our bills and our financial decline. Me. Because I cannot function.

Clearly the migraines don't give a damn about that. They can take a whole day and not care that you needed it.

A problem that looms ahead of me with no solutions to be found. Yet. But the way my brain is I have no idea what solution that could possibly be.

What is negative? What is th postive you want to feel?

So my psychologist asks these questions before he proceeds with this weird EMDR therapy for chronic pain.I don't know if the EMDR therapy is working yet be the questions always get me thinking.

But the questions of what is the most negative thing you associate with your pain I don't like because well I don't want to think about those things. I could in general relate to the whole list of them. I could in general focus on the whole list of them and work myself into a real state if I wanted to. I think the first time I picked I can never be successful because I worry a great deal about my ability to function right now. And this time I picked was something about unable to physically be well because I have just been unable to get around the pain and symptoms to get to the point where I can see where certain things can be conceivable goals. I can't work. I need to work. Obviously this was on my mind. Is on my mind. Consumes me with trying to find solutions. And the whole purpose of me seeing him to begin with. Those two negative ones are not easy to pick out by any means. Honestly you look at that list and it is like 'I relate to that'. 'Oh, I relate to That'. But clearly my inability to function and my worry about my capacity to work is an immediate concern and causes a great deal of anxiety so it is was a top concern the first time. Today I picked a more pervasive all around I cannot function one because the pain has been intense lately, as has the fatigue and vertigo and it seems even when off I can do so very little... so very little functionality even when I'm off means that is very little capacity to function and that worries me a great deal in my what options I have available to me to resolve my problems.

And then you are supposed to pick the positive thing you to associate about your pain and the first time I said I want to be worthy. I want to feel worthy. I don't want to feel useless because I cannot work. I want to be able to function. I don't want to feel guilty. I want a purpose. And I understand my inability to work at this time has nothing to do with my worth. I get that. I just want to have that sense of self-worth again in any sense of the word. And to some degree it has come back in inches and will come back more if I get some self-confidence I can manage the pain a bit a be capable of more things. If you are able to fill your life with just small things then you have more self-worth and that does not always mean work. However, I do need to work in some capacity to survive. And it is a blow to my self-worth every time when I am not Capable of types of work and I struggle to find these solutions to that.

I have no idea what the intent behind these exercises is by the way. But I'm a very introspective person so I think about them a great deal afterwards. They remind me a great deal of the self cognitive therapy I did a long time ago. And to that end they are a good exercise to engage in to sort of see what you are currently thinking about. That real negative idea you have floating around and what that stems from and what sort of positive framework you want to aim for.

Now today for that positive thought associated with my pain I choice I want options. Being as I feel so limited by myself physically I would want options. ...But the one that sticks with me now is 'I deserve to live' so i guess I should have picked that one. Because really when it comes down to it I want to survive but I have all this pain I have to cope with and I also need to work, and I cannot find the ground where these two meet and I can achieve a balance. But I deserve to live right? I deserve to have pain management. I deserve to not have to struggle with so much pain that it wanting to survive is an issue. And yet that would be my greatest fear because I have to find a way to meet my financial goals and yet have to find a way to endure the pain.

But yes, that stuck out in my mind pretty clearly. I deserve to live. I suppose I do. Don't we all? We deserve to live. And we deserve effective pain management so that we can work if we have to work.

Sort of an interesting #doctors appointment... bone density to colonoscopy

First of all I had gone and had a bone density test because I am on depo prevara shots for the mentrual migraines and apparently over time that can affect bone density. So she had me get a baseline. Then I get this call. You know the one. Doctor wants you to come in to talk about your test results. Well I have had wicked migraines due to the weather so it took them a week to get a hold of me and I was like 'What test results?' I didn't remember going in for something that I might expect any sort of call about at all. Certainly not that so when she reminded me I was like 'Oh crap'. The receptionist goes 'I can't read what it says you have to speak with the doctor.' I know not to freak out about test results but I also know if they ask you to come in it isn't Good and bone density generally means lack there of. And I was right. But not like insanely low. Just statistically low for my age, which given my age, is a little abnormal. Maybe due to the medications I am on. Which she says may affect my ability to remain on the depo prevara long term which obviously sucks. And clearly means keeping up with the vitamin D and calcium thing she recommended last time. So I hate the sun and milk. So that was... unexpected. But I have yet to fall down and break a hip.

So then I bring up the fact that I can't seem to get my freaking insurance company to process their idiotic new form on triptan policy so I keep getting charged for triptans I really cannot afford. And since it keeps getting filled out wrong, and I don't know how this happens, it is a simple form, but I was rushed last time and asked that she sign it at the end of our appointment and likely I missed something... as I said bad migraine zone. And I could not find the form on their site now to get a new one to fill out. Found where it is Supposed to be. Know where it is supposed to be. It isn't there. So I said can you please prescribed me caffergot, an ergotamine which is okay by these new rules so I can have some sort of abortive. She was cool with that. Gave me a script for both. So if I can get this sorted out I can switch. If I can. So That issue temporarily resolved.

Then I brought up this issue I have with IBS. That it is worse lately with the pain. And also that I have had severe attacks. It is sometimes severe, don't get me wrong. I get a lot of severeness. But the severe attacks are the ones with severe cramping and those ones are the ones that cause the clamminess, the shaking, and the blacking out. And I said even if I force myself to stop and get up I may pass out. And sometimes throw up. And then start over. But even after that either almost passing out or passing out I feel absolutely crappy for the rest of the day... sometimes severely dizzy when I get up. I just wanted to mention that. And ask about whether there was a way to treat those ones.

And she says are you always on the diarrhea side? Yep I say, unless I try to treat it, then I may get constipation which causes severe cramping until it the diarrhea comes back. She asked how I treated it and I mentioned all the tricks I tried. Other than the yogurt and fiber thing, which helped a bit but didn't treat the attacks so not sure that counts, just helped the constant diarrhea issues somewhat, unless I had a migraine.

Then she says How do you know you have IBS. And I thought to myself good question. I said they did that test with the horrible chaulk milkshake twice, two different doctors, and I have FM and so they said it was IBS. Case closed. Fits in the FM box like they always do.

She said that test isn't enough. We need to eliminate other causes. Like parasites (lovely though) and Chrons disease and Ulcerative Colitis and Celiac disease. Some of which could be causing the bone density lose because I'm not getting any nutritional value.

You see that is a good doctor. She listens. Asks additional questions. Listens to your answers. Realizes no one has done anything about this and I have had it for years and has gotten worse after the whole NSAIDs incidents. And so she does what should have been done years go. Eliminates other possibilities. It likely isn't those things... but what if it was? In some cases patients might very well have such symptoms and it might be those things, that is why you check them. That is why even though this doctor has moved into this city my spouse and i have followed her... good doctors are a rare thing.

One problem. One Big problem. To test for these conditions ... a colonoscopy. My spouse had to go though all these tests himself. He had IBS diagnosis himself. IBS-C though, so the opposite of me. And he had to do it. And then he had an additional test down the throat. And another colonoscopy. To find that he in fact has gastroparesis. Same doctor by the way. His other doctor prior gave him T3s for his abdominal pains... and I said that is going to constipate you and you will be in More pain. Even I Know that. So he went to her, and she said the same thing and finally after having this horrible pain of his for years got the right diagnosis and is being properly treated for it. And now... I must endure this test myself.

I'm sorry but I don't want anyone looking at my but let alone sticking something up there. It is My butt. Not for public viewing. I don't care if I am conscious or not. I'm going to wake up and go 'I've been violated!' I will. I swear I will. No matter how unpleasant I'll do it because I agree those things should have been eliminated a long time ago. Plus the damage the NSAIDs did...I wonder if that ever really healed right since I cannot take them at all still. So we will see what they, er, see up my butt button.

You know you have a good doctor when you just mention something for the record. Just wanted to ask about that passing out thing and maybe what to do about it. And she thoroughly investigates the issue. I did not anticipate walking out of there with that test. I made a frowny face at my spouse at which he laughed and laughed.


That was me... not my illness

Sometimes this is hard to distinguish but clearly when I am awesome that is me not my illness. It is hard for other people to distinguish because my awesomeness gets in the way of them seeing my illness. Like my awesome sense of humor. It is very hard for people to tell how much pain I am in when I am so goofy and have such an awesome sense of humor. It is hardly my fault I like to laugh and still find things to laugh about when I am in pain. I would say it is just the way it is but in fact it is a way I have tried to cultivate because I really prefer to laugh and be around people who make me laugh because I am in pain. It is an unintentional side effect of coping with chronic pain that helped grow and cultivate this sense of humor but one I like to continue to counter balance the fact that I also like to over think and over think... and think myself into places where laughter does not exist. I am told that is partly from lack of sleep, pain levels and pre-migraine states... that is bouts of depression. However it is also part of my nature. That is also me. But yes, the pain is my illness.

Here is the thing. I am going to get profound. Wait for it. We are born with, or shortly there after due to nature and nurture, develop something called a Personality. Some of us have more of it than others granted. Some of us have personalities that are so large they seem to fill a room... I call them Extroverts. While some of us don't want to be in the room... Introverts. And that is just one major facet we all know about personality. So we go through life reacting to situations based on this model of a personality we have developed... because it is our core strategy for how we deal with life's little adventures. Then comes along a huge, constant stressor called chronic illness. And guess what? This has an impact on personality. How can it not? And that is why we say things like 'Pain changes a person.' And 'Don't let your illness define you.' Because it has this impact and we all know it does not take very long for it to change us in many ways. And we automatically develop coping strategies based on our personality... just like we respond to any stress based on our personality but that does not mean these coping strategies are good ones, only that they make us feel safe. Good example is the Introversion/Extroversion. "Extroversion- Scorers high on extroversion tend to cope very well perhaps because they utilize a variety of coping strategies. Whereas someone on the low end of the extroversion spectrum is more inclined to retreat, avoid and self-blame." (How chronic pain can affect personality). I'm a real solid Introvert... real high on the Introversion (which by the way does not mean the same as shy... look up INTP personality type and you will find me.) Anyway, what I do when in a lot of pain, and certainly coping with illness in the beginning or when it is worse or in a lot of stress... retreat, retreat, retreat. And I love the self-blame. I try not to avoid because it leads to worry but it happens.

When looking at the "The Big Five Personality framework used in contemporary psychology looks at these traits: Openness (curious vs. cautious), Agreeableness (compassionate vs. unkind), Neuroticism (nervous vs. confident), Extroversion (energetic vs. reserved) and Consciousness (organized vs. careless). How we respond to stressors can depend on our personality type and if we look at the facets of the Big Five personality test it can show how different personality types react in different ways."(How chronic pain can affect personality).

"Neuroticism- High in this facet tend to be nervous, insecure and worry a lot whereas low scorers are more calm, relaxed and secure. High scorers tend not to cope well and therefore choose ineffective coping strategies. They engage in a lot of self blame, have difficulty with problem solving and practice more avoidance when stressed. It could be there higher level of emotional responses that hinder their ability to choose healthy coping strategies for the right situations." (How chronic pain can affect personality).

"Openness- Someone who scores low on openness might have difficulties finding effective coping strategies and are less inclined to try new methods.
When diagnosed with a chronic pain condition how someone reacts to that situation and begins the coping process depends on their existing personality. To some extent how they already habitually respond to stressors. The fact is if we use negative coping strategies and have problems with problem solving it could easily lead to hopelessness and depression. We may be inclined to avoid the problem, engage in wishful thinking, disengage and retreat, instead of actively engaging in the world using several coping strategies. An introvert may become extremely introverted for example because chronic pain causes you to decrease social activities and leisure activities as it is and an introvert may just further retreat. An extrovert would obviously try numerous coping strategies, but if they failed perhaps they would also be the first to feel isolated if they were unable to get the social contact they were used to. Therefore immediately we will see facets of our personality highlighted as we struggle to cope with a stressor that is continuous. These are the traits we use all the time to cope with everyday stress. It is never a problem, or sometimes it might be but never a major problem. When it comes to this sort of enduring stress it becomes a greater issue." (How chronic pain can affect personality).

Additionally we may develop comorbid conditions like depression, anxiety and panic disorders.

So our personality impacts how we react to our illness from the get go. And we change to cope with our illness. Some of our coping strategies are not effective and it can take us a very long time to adjust that. It can take us a long time to develop positive coping strategies and Those change us. All of these... eventually become parts of who we Are. Like my awesome sense of humor. Also I am a hermit and pretty well known for liking it.

Then there is the Illness. And that fine line between. I am very well known for being absent-minded and clumsy. Sort of worse now. However I have been this way for as long as I can remember. That is why they are traits people know me for. That is my illness... not me. But so ingrained that even I say it is me and joke about it. I have not known a me without those traits. Some things I am very adamant that are Not me, they are my illness. It isn't like me to be chatty... but migraines sometimes get me jittery, nervous, shaky and on edge and I cannot shut up and I loath it. Likewise when aphasia hits or fibrofog and I lose my words, cannot speak properly, cannot communicate write, use the wrong words, cannot write properly... I find this embarrassing and frustrating at work... more funny at home... but Not Me... the Migraine.

However, when I am creative that is me. But of course pain is very... inspiring of that there is no doubt. I love to write, to blog, to write fiction, non-fiction. And that has always been me. The fact I choose to write about my illness is partly due to advocacy, partly due to the benefit to me, partly a pain distraction and mostly because I love to write. Pain cannot take it from me... it can provide inspiration, but it is all me.

When I am brilliant and thoughtful and philosophical that is me... I know my IQ is the same, I have tested it again to just reassure myself there is no brain damage going on there but most definitely this brilliance is like the sun on a cloudy day peaking out occasionally. The pain, fatigue, migraine neurological issues and fibro fog compromise that brilliance dulling it to mere 'functionality in the face of necessity'. I'm far more brilliant flexibly. And on paper. And between migraines. Once I had a migraine free day last year and the Clarity was astounding... it was so productive that day I was amazed at what it felt like to not have that pre-migraine, migraine, after migraine day. Imagine what I could get done if had two such days a year. The possibilities are infinite. Anyway that is all me. The person who loved to think about thinking so much she major in Philosophy then took her Masters in it... that was all me. My illness might have prevented me continuing that academic path and that was a health compromise I chose but it is still a part of who I am. I will always be that person who bores people at parties talking about things I read, or a study I read or a philosopher I read... and I literally see their eyes glaze over and stop talking, until I find another Introvert who then I can likely get into a real chat with about something we are both intrigued about.

When I am goofy, dance funny because I want to even in public, make silly jokes and laugh with others that is me. It is a me that I let out to play when i was coping at a young age with chronic pain and fibromyalgia. When I was getting through my negative coping strategies and choosing to look at things a different way. I chose to give myself the permission to be happy in pain, permission to seek laughter when in pain and to seek out people that made me laugh, instead of people that made me depressed.

So when I am creative you can see me. When I write something profound I am there as well. When you hear me laugh there I am. And when i am awesome... I am also there. The illness is there too. I laugh when I am in pain. I write a story at times when a great deal of pain. I write articles in pain. The pain is there. Sometimes you can see it... when the laughter is gone, when the story has more typos than word and when my articles are delayed and when by blog posts are short, maybe ranty.

And yes I have been fundamentally changed on a personality level as I coped over time, but not all of that is bad and negative. We learn to cope. We learn to survive and over time we tweak those methods because we must constantly adapt our coping to our life. I don't think it a bad thing that we are changed by our illness... I think it is a necessary process that we are, we just have to seek the ways that are positive coping strategies and reduce the negative coping strategies. Take care of our mental and emotional health. Let the you shine through the illness when you can.

Gender stigma against woman and chronic pain

"In 2011, the Institute of Medicine published a report on the public health impact of chronic pain, called “Relieving Pain in America.” It found that not only did women appear to suffer more from pain, but that women’s reports of pain were more likely to be dismissed.
This is a serious problem, because pain is subjective and self-reported, and diagnosis and treatment depend on the assumption that the person reporting symptoms is beyond doubt.
The oft-cited study “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” found that women were less likely to receive aggressive treatment when diagnosed, and were more likely to have their pain characterized as “emotional,” “psychogenic” and therefore “not real.”
Instead of appropriate care for physical pain, this can lead to treatment for mental health issues that might not even exist. The situation is further complicated by the fact that antidepressants are absorbed differently in women and vary in effectiveness, depending on hormonal cycles.
The routine attribution of abdominal pain from conditions like appendicitis or gastrointestinal disease to gynecological problems can also delay or complicate the diagnostic process. A 2008 study published in the journal Academic Emergency Medicine, designed to gauge gender disparities among emergency room patients complaining of abdominal pain, found that even after adjusting for race, class and triage assessment, women were still 13 to 25 percent less likely than men to receive high-strength “opioid” pain medication. Those who did get opioid pain relievers waited an average of 16 minutes longer to receive them." The Gender Gap in Pain

I find the stigma to be rather amusing it a bitter sort of way since I have certainly encountered it. What is amusing is that doctors seem to believe woman are exaggerating their pain because we are such 'emotional' creatures or are so very 'stressed'... when in reality what they are actually saying by not treating our pain is that we apparently are stronger than men and have insane pain tolerances because we don't need any treatment for the same ailments. See the irony. Not funny but funny. 

Echoes from the past

I was looking for a very old philosophy article I wrote and came across some very, very old poetry I wrote. I seriously hoard this stuff. Never throw away written work. Except when i was spring cleaning I did a little. Anyway, I'm going to share it with you. Let you know what I felt about FM back in the day. I didn't have chronic migraines then. Sort of poetic reflections. Poetry and writing a journal being ways to sort out the feelings we have about our illness.



LIFE

Everyone has to work,
     I writhe in pain.
Everyone has to sleep,
     I twist and turn again.
Everyone has to get up,
     It is driving me insane.

TIRED 

I'm so tired. 
Too tired for school today. 
I'm too tired. 
Too tired for work today. 
There goes life slippen away. 

 I'm so weary. 
Too weary to lift my head. 
I'm too weary. 
Too heavy to get out of bed. 
There goes life slippen away. 

 Life has slipped way. 
I can't even make the day. 
Here I am going nowhere, 
No energy to spare. 



I remember me

I remember movement,
            Without pain.
I remember sleeping,
            Without waking.
I remember thinking,
            Without blundering.
I remembering learning,
            Without forgetting.
I remember living,
            Without tiring.
I remember vaguely
            …Indistinctly
            What I no longer am.

I am movement,
With pain unrelenting.
I am half awake,
When I sleep
I am half asleep,
When awake.
I am forgetting to remember,
What I forgot.
I am weary,
Of being tired.
I am Fibromyalgia.


And I have no clue where this one came from at a young age given the lack of wrinkles even now...


Wrinkles        

That’s where the worries go
            Like tears that flow through
                        edges and crevices     
To map our faces with sorrow and woes.
 
 

Intranasal Oxytocin study for #chronic #migraine


Small study involving 40 patients with chronic migraines were treated with an agent referred to as TI-001 an intranasal version of the hormone oxytocin. Patients with chronic migraine who "received a dose of the agent and were asked to rate their pain, nausea, photophobia, and phonophobia on a 4-point scale (indicating severe, moderate, mild, or none) prior to and at 0.5, 1, 2, 4, and 24 hours.At from 2 to 4 hours, 64% of the patients who received the agent reported a reduction in pain by 2 categories (either from "severe to mild or none," or from "moderate to none") compared with only 27% of patients who received a placebo." Intranasal Oxytocin Looks Promising for Migraine

The body itself produces oxytocin to " induce labor and promote lactation, but its strongest release comes during sexual orgasm in both women and men. The current liquid intranasal formulation of the hormone is inhaled up one nostril to reach and cover the nasal mucosa, said Dr. Yeomans." Intranasal Oxytocin Looks Promising for Migraine "This intranasal method of delivery bypasses the blood-brain barrier and directly accesses the part of the nervous system that is involved in chronic migraine, he said. The idea, said Dr. Yeomans, is to concentrate the hormone in this trigeminal system to access oxytocin receptors and decrease pain-evoked neural activity and therefore head pain."

"Experiments in rats have demonstrated this scientific phenomenon: after application of oxytocin, the hormone is preferentially taken up throughout the trigeminal system. "It goes directly to the trigeminal nerve, which provides all the pain information from the head," explained Dr. Yeomans. "If you put oxytocin in the nose of rat, you see high concentrations all through the trigeminal system, so it's really concentrating there."
The researchers noted that those patients who had taken a nonsteroidal anti-inflammatory drug (NSAID) such as aspirin or ibuprofen prior to treatment did much worse than those who did not take such a drug. None of the patients who took an NSAID responded at the half-hour or 1-hour time points, and many fewer responded the rest of time compared with those not taking an NSAID.

Dr. Yeomans explained that inflammation causes a 5-fold increase in oxytocin receptors in the trigeminal system, "so there's a whole lot more for oxytocin to target," but an NSAID will block this inflammation.
The study also found that compared with placebo, the nasal oxytocin decreased the percentage of patients with nausea, photophobia, and phonophobia."
 Intranasal Oxytocin Looks Promising for Migraine 
The company is now involved with a larger study involving 100 patients to test the efficacy, tolerability and safety of the medication. With a phase 3 study likely to follow a year from now. Hypothetically this sort of product could be available within three years assuming the studies go well. Certainly an interesting study and treatment option. It will be interesting to see what develops from it.


Negative Physician Attitudes About #Opioid #Pain Meds and higher prescribing rates of #NSAIDs with #chronic pain


According to a study published in The Journal of Pain negative doctor attitudes about opiate medications are closely linked with lower rates of prescribing them and more favorable attitudes linked with higher levels of prescription levels. 

"In 1994, Dennis C. Turk, PhD and colleagues at the University of Washington conducted a survey of physician attitudes about prescribing opioids for chronic non-cancer pain, which identified significant differences in attitudes and beliefs throughout the country and by medical specialty. The current study, also conducted by University of Washington researchers and collaborators, was intended to assess how physician beliefs about opioids have evolved over time and may coincide with changes in regulations, increasing drug misuse and negative public opinions about narcotic pain medications." Negative Physician Attitudes About Opioid Pain Meds Linked with Lower Prescribing 
We as patients obviously do not need a study to be aware that some doctors are extremely adverse to opiates as an option regardless of a patients pain or pain management options. Whereas others are clearly understanding that in some situations pain levels are a concern and pain management is an issue that needs to be addressed in the patient when other options are not effective. Obviously how public option reflects on the doctor, how the regulations have changes and this stigma of chronic pain patients seen as drug seekers are all factors in how this affects the way a doctor prescribes. And of course the patients overall wellbeing as a result.

The study involves a 38 item questionnaire that delved into the attitudes on implementation and concerns regarding the prescription of opiates, perceived efficacy, medical education and the benefits of the tamper resistant formulations. "Phases Two and Three involved pilot testing and the formal survey of 1,535 physicians. More than 70 percent of the respondents reported they use opioids in fewer than 30 percent of their patients with chronic non-cancer pain. However, physicians who see higher volumes of pain patients were more likely to prescribe opioids and said they are less concerned with impediments surrounding opioids, are not worried about or avoidant of prescribing Schedule II vs. Schedule III drugs, believe in the benefits of TRFs, and know they were adequately trained to treat chronic pain. These results are consistent with other studies showing that physician uneasiness with prescribing long-term opioids is linked with inexperience in using the medications. There were no differences shown in overall physician attitudes about opioids in various areas of the country. The authors noted that orthopedists expressed the most negative views of opioids, showed the lowest level of confidence in drug efficacy, and had the highest mean levels of concern about opioid addiction, tolerance and dependence." Negative Physician Attitudes About Opioid Pain Meds Linked with Lower Prescribing 



Well then, if attitudes of the doctors reflect how they prescribe then what are they prescribing instead and how does that effect a chronic pain patient? The answer should be pretty obvious... NSAIDs. Quite a bit in fact according to The Journal of Pain.A study at the University of Missouri Kansas City School of Pharmacy, Children’s Mercy Hospital, Kansas City and University Health System, San Antonio looked at information from more than 690,000 patient visits to doctors offices compiled for the National Ambulatory Medical Care Survey from 2000 to 2007. Data included patients 18 and over with common non-malignant chronic pain.

"With regard to pain medicine prescribing practices, the authors reported that, in compliance with published guidelines, non-steroidal anti-inflammatory drugs were with most common medication class prescribed as a first-line option. NSAID use was surprisingly high with rates of 97 to 99 percent in all chronic pain types studied. Acetaminophen use was very low at 4 percent. The authors surmised that many chronic pain patients have not achieved sufficient pain relief from acetaminophen by the time they decide to see a doctor" Primary Care Doctors Prefer NSAIDS for Chronic Pain Treatment

And opiates? Must be used a lot for people to be so concerned about them right? Nope.

"No other medication class was used in 26 percent or more of the study population, and there was a lower than anticipated utilization of opioid analgesics. They were prescribed for only 10.5 percent of the general pain group." Primary Care Doctors Prefer NSAIDS for Chronic Pain Treatment

Yet no one seems to care about the risks that come with NSAIDs especially the heavy duty ones that are prescribed by doctors. I will say this was the option given to me when i had adverse reactions to triptans... I was put on toradol. Had a very adverse reaction to that. Not very surprising. I have IBS-D so going on that sort of thing for any length of time I guess maybe carries the risk of causes severe abdominal pain, cramping and diarrhea. Maybe I had a doctor adverse to opiates because she went for a different NSAIDs... Arthrotec. One that has a stomach coating. And I admit it was easier on the stomach, just not the intestines. I said, hey, this is still causing pain, cramping, diarrhea. Sort of hard to treat a migraine and work with this. She said it would go away when I got used to it. I think this to be generally true for this med but not in the extreme case I had so I think I may not have expressed myself well. And I think it was my mistake to believe this for one, to keep taking it for two (but work is work) and to not really be insistent to the amount of pain for three (too damn stoic). Anyway... NSAIDs... can cause all that internal bleeding business. And so it was. And I can't take this class of medicine anymore. Not even OTC. Extreme adverse reactions now. It really pissed me off at the time to the point of stopping seeing her even though aside from this issue she was a damn good doctor and I don't actually care if she was adverse to opiates in general to be honest as long as she was a damn good doctor... in general she listened exceptionally well, but in this case there seemed to have been a bit of a miscommunication. Maybe she assumed something there. I think it was that she didn't believe the seriousness of my expressed symptoms to be honest because it is hard for someone in chronic pain to express the seriousness of pain when it is so commonplace and you don't want to seem like you are exaggerating. Either way the whole bleeding business that progressed to just blood didn't feel like exaggerating or being on pills to 'fix' it for a year either... and whatever happened there didn't ever fix my extreme intolerance to NSAIDs or aspirin after either so that really sucked. Sort of wish we had stopped at the first one and maybe considered different options before all that damage had occurred.

And in regards to these doctors so adverse to opiates and I would like to point out not treating patient with chronic pain that isn't being managed at all by other means is dangerous to the patient. They have a hard time functioning in the work place, but many need to actually work... so the damage you are causing is extreme. And the danger mentally and emotionally cannot be underestimated given the fact pain alone is a suicide risk and yet That is completely ignored.


 

 

Laughter is the best medicine

It occurred to me that occasionally I chance upon some piece of pain humor that tickles my funny bone... and sometimes it floats around again. The real good ones do. But sometimes they don't. So I post them on my page for sure but if they are links to sites I may lose them... so I figure maybe I will post some of the ones I really like recently and if it is on my blog, well, that lives forever. And I can enjoy it again and again. Or at least have access to the source if I want to post such awesome humor in the future. Maybe I will do it once in awhile just to have some blog humor on here to make it a little less depressing, eh?

 This cartoonist has a blog called A Cartoon Guide to Becoming a Doctor and this is an old one but I only came across it at the end of June... I find it hilarious of course.
The fact he is a doctor is funny in itself... most of them have their sense of humor surgically removed in order to attain that poor bedside manor.I suspect some sort of nerve damage in the hands is to account for the handwriting, or at least that is my excuse.
 
Added this to help you out with understanding your doctor


Pain

I think we have seen this pain chart everywhere on the web... it is an awesome one. And it comes to us from Hyperbole and a Half (check out the link it is hilariously funny) where she describes the descriptions as:

0:  Hi.  I am not experiencing any pain at all.  I don't know why I'm even here.

1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don't want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I'm scared.   

8:  I am experiencing a disturbing amount of pain.  I might actually be dying.  Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers:  You probably have ebola.  It appears that you may also be suffering from Stigmata and/or pinkeye.

Also her whole description of depression is humorous and yet very insightful... check out Depression Part Two

This is classic migraine humor here. Don't really need to add this because I have the picture saved and use it from time to time in posts.

This is worth a read if you are a little tired of all that Inspiration... and nothing wrong with some inspiration, but we can get tired of an overload of it especially when we in no mood to feel inspired. 
Twelve Habits of Happy, Healthy People Who Don’t Give a Shit About Your Inner Peace

And always remember....



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...