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Showing posts from December, 2013

Think about those New Year #Resolutions or health goals

Peristent migraine #auras (PMA) and #photosensitivity

Persistent migraine auras and photosensitivity do not actually work well together. I'm not sure I have talked about the two issues combined but there is a bit of irony here.

Some persistent migraine auras do there own thing and there is nothing you can do about them. Some seem to be triggered by extreme light. Like a migraine is. Almost seems like you are triggering a silent migraine by the intensity of the aura phenomena and maybe that is the case... hard to say really. All I know is that some aura phenomena statistically occurs when I go outside into a bright day, a lot.

Now photosensitivity for me is not entirely migraine related. It is severe with migraines but it is really quite intense all the time. Maybe that is because of fibromyalgia. Either way I am a sunglasses whenever I go outside sort of person. And I have an affinity for hats as well, since the combo means I can choose different sorts of sunglasses that can be worn indoors as well. But light of all sorts is painful…

Twenty one pilots 'Migraine'

Am I the only one I know
Waging my wars behind my face and above my throat
Shadows will scream that I'm alone
I've got a migraine
And my pain will range from up down and sideways
Thank God it's Friday
'Cause Fridays will always be better than Sundays
'Cause Sundays are my suicide days
I don't know why they always seem so dismal
Thunderstorms, cloud, snow, and a slight drizzle
Whether it's the weather or the letters by my bed
Sometimes death seems better than the migraine in my head Let it be said what the headache represents
It's me defending in suspense
It's me suspending in a defenseless test
Being tested by a ruthless examiner
That's represented best by my despress...ing thoughts
I do not have writer's block
My writer just hates the clock
It will not let me sleep, I'll get some sleep when I'm dead
And sometimes death seems better than the migraine in my head
Am I the only one I know
Waging my wars behind my face and above my throat
 Sh…

My Christmas

I always remember with chronic illness that when it comes to Christmas and holidays really to keep your expectations realistic. You cannot live with this ideal fantasy Christmas that never exists let alone have unreal expectations of yourself or you could give yourself more pain, more fatigue and possibly depression.

What I have always understood also is that I cannot go to every invite I get. When I was working, well, that took pretty much everything I really had in me. And weekends were recuperation time. So I really had to choose any celebration wisely based on the amount of energy it would consume and when it was. Was it a Friday for example, a Saturday... a impossible weekday or Sunday? Was it going to have a lot of people or be loud? Or just  few people or a small dinner? Was it far or close? Had I not gone to that person's last year. Is it for family or just work? All considerations. All variables. A social life and working with chronic pain and chronic migraines, well, the…

In the land of #pain... everybody will get used to it but me

“One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.” —  -New Yorker, “What’s Wrong With Me?” In the land of pain... everybody will get used to it but me. That sentence there makes a lot of sense to me. It is rather true isn't it that pain is always with us but loses its 'freshness' to those around us. We can't really keep saying 'hey, by the way this still damn well hurts' because it just loses 'meaning' and we become 'compla…

#Muscle #Fatigue and #fibromyalgia

We know that fibromyalgia pain isn't in the muscles but rather in pain dysfunction in the brain... and indications in new research suggesting possibly in small fiber neuropathy as well (which is an intriguing line of research to be sure). But what about muscle fatigue?

I know that some of our muscle fatigue must come from inactivity. We are told to exercise and like most people who are inactive... not all those muscles are used to that much activity, or the sort of exercises we might be trying. But clearly it isn't all due to that. I know in my case it has Always been the case, since I was quite young. I just lacked muscle endurance. They fatigued very quickly. I Could lift something. I had the Capacity to do so. My muscles could handle it. But... not for very long. They would tremble and shake, almost immediately and I would have to put it down... or drop it. In fact, I know from experience if something weighs a certain amount I have to lift it a certain way so that when this…

Migraines in the dark... pictures of my life

There is so much of my house that is catered to darkness or soft light. Limited light. Directing light. Making it indirect light. Or softer.







Going outside means sunglasses for sure. Although I have taken to sunglasses and a hat.

Ah, photophobia...




I will rebuild myself stronger than before... a rather easy task in my case I would say

Doesn't that poster make you feel a little stronger? Want to fight a little harder? The fact is with chronic pain and chronic illness our drive to fight cycles up and down because it is a hard battle and hope sometimes is lost. When we regain some glimmer of hope we are boosted up with possibilities again. Not of cures and massive recuperation nonsense but of doing things we believe may make a different. Small, medium or, you never know, could be large differences. We just know with the right tools, or tool-set, it is conceivable we can have some improvement. And the idea of some improvement sounds so damn good. I mean just even a few migraine free days a month sounds like blissful to me... just a nice break in the pain every month.

And, yes, I get my fighting attitude back. Instead of that lackluster existence is what it is attitude. My fighting attitude says to me you need to look at all angles of your health and figure you ways to treat each of them. It says you need to make …

The new neuro

It is always interesting when you meet a new neurologist when you have had chronic migraines for a long time. Way back in the beginning you have this optimism that they know a vast amount about migraines and that the medication they recommend has a great deal of potential to do something. After time you realize both of those are flawed assumptions. Generally neuros seem to know the migraine basics but some know more and some are vastly better than others. You sort of just hope you win the lottery there. When you don't it is a horrible disappointment. You can sort of tell immediately that their knowledge base is not that broad. That they do not answer your questions with a great deal of experience. And their recommendations for treatment are simplistic and flawed. And while you have to simply take what you can get at the time it takes a very long time to see a neuro where I am... so a very long wait to see if the next one is any better. A very long time for stagnant treatment optio…

Exercise, migraines and fibromyalgia... what a fun combo

On my visit to the neuro he said one of the goals he wanted to help me with was exercise. The clinic he works at has a multidisciplinary outlook and has a chronic pain treatment force there to help with such cases as mine. Where exercise may help with the migraines but other comorbid conditions sort of have been resisting to exercise. Like in that picture above I have some problems with exercise due to the fibromyalgia. Can't seem to get above a mild level without a pretty significant increase in pain... or really significant back pain that totally screws my mobility for months. So I said this was a damned fine idea because if I have problems it is likely because no one ever said maybe someone should help with telling me what I can and cannot do and how to do it with the body I have. Although I would have though yoga was a good choice, but whatever.

Anyway, all neuros say exercise. And you want to punch them in the face. Repeatedly. And hard. Because we have chronic migraines. Wh…

#SuperBetter... Jane McGonigal talks about how to think about your illness and improve living with it as well

If this method appeals to you then there is a site with introductions into it as well as an iPhone app.  And it is a method... a mind set... we all need ways to think about our illness and cope with the secondary suffering components of it as well as ways to help reduce those secondary components.  Problem is often they seem like a chore, or they don't seem that effective, or the suffering seems so damn overwhelming. But the fact is it is the small things that are effective. A little exercise is effective for this purpose... despite what what doctors might say to the contrary, a little actually goes a long way for mood and mental fatigue. And this does look at all the factors that do improve various areas and help boost things. Hell I have heard all the things I should focus on before and it is really just the same thing but it always seemed like a lot more effort... and when you consider you are in a lot of pain that effort to get out and socialize and do things to boost your mo…

Cold hands warm heart... cold hands and nose and #migraines?

My hands are always blocks of ice. I always use the saying 'cold hands, warm heart'. Especially when I freeze people with my hands. I honestly had not considered it a migraine thing to be honest until I began the thermal biofeedback where they say that your hands get constricted bloodflow with the migraines and cold hands are an indication of this... so they instruct you to try and heat your hands up through the process of biofeedback. And my hands were quite a bit colder than I though they were... running in the low 70's rather than I high 80's and 90's for norm. My right hand slightly colder and more sluggish, but it also feels quite a bit colder, even if the degree difference is slight... I suspect that is from the nerve damage, it feels temperature quite a bit more.
The study compared skin temperature in the face and hands of 41 Finnish women, 12 with migraines and 29 without headaches. A family history of migraine headaches was reported by 85% of migraine …

My neuro appointment on the mysterious Paresthesia issue

I had my appointment with the neurologist about the intense Paresthesia sensations have been getting below the waist. The good thing is that there is no problems with my spine from the lumbar area down. He said the last MRI that was done was done on the entire area. Even though one would think the symptoms would indicate something in this area, it definitely is not that. Which is good, none of that sounded in the least bit freaking fun at all. He also said my file reflected my doctor had checked my B12 which was good. I had wondered about that, since it can also cause Paresthesia... sort of thought that might have been a nice easy one. Still reflects my doctor is on the ball there.

He wants to do a MRI from the lumbar area upward to the neck to check for anything that may be affecting the spine in those areas. I had assumed none of those areas could cause such symptoms but I guess not. Still he said I had to be prepared for that to not show anything. Unfortunately I am prepared for th…

Prolonged migraine auras and Triptans

I just had a WTF moment as I randomly was looking at information for something else. Sometimes you hit something and it just knocks you upside the head. In this case because I have had permanent nerve damage in my hand I was told was caused by the viscous status migraine I had, as it occurred during it, but that it has happened because of the status migraine and the fact I always have as it were this pre-migraine state... the persistent migraine auras. Another neuro said, well, it was likely a stroke in your sleep, which then caused the nerve damage. Either way, nerve damage from migraine. Sucks, but there you go.


But... then this wee tidbit. it turns out that triptans and ergotamines are contradicted for treatment in prolonged auras, just as they are for HM and basilar migraines and for the same reason... an increase in stroke risk. Advanced Therapy of Headache Book It Is a good place to find a reference for what I was talking about.

Third, triptans probably do not work fo…