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Showing posts from May, 2013

June blog challenge for Migraine Awareness

I just realized tomorrow is June 1st... that sure got here fast! I seem to have misplaced parts of last week due to a three day acute migraine... if someone finds those days feel free to pass them along. Anyway it is time for Migraine and Headache Awareness month... which means a blogathon to raise awareness! I really enjoy participating in these things and hearing about other peoples experiences. They really do raise awareness as well... with social media these days so many ways to pass along a message and share information.

I think the more awareness we can bring to chronic migraines the better. There is a massive stigma with them. We all have likely experienced it in some form in some part of society. The migraines have a massive toll on our lives as well. I have been known to be pretty blunt about that from time to time. I insist upon it sometimes. It has a massive toll. I want to explain that as clearly as I can. Not to be overtly negative but to express the depth of the experie…

Migraine stigma

Weather trigger... guess that was the answer to that migraine. Mystery solved.

It's raining, its pouring... pain, pain go away come back some other day. Or not. Not saying you have to come back some other day. It was actually quite the thunder boomer... heavy rain, then hail, then rain, then hail... some good thunder and lightning. And two of the cats of course were in the basement for hours. For one of those sudden spring storms it lasted longer than I thought it would actually, but those are the worst though... if it is rainy all day, not an issue. Rather like cloudy, rainy days. I actually love storms as well... just my brain isn't fond of them.

I managed to get rid of a three day migraine with some heavily medicated sleep so I woke up feeling pretty good. The first indication I was getting a migraine at all was just the sudden bout of vertigo.

Wish i could have caught a picture of the downpour of the nutty hail, but I was resting my brain before the Migraine Misfits Chat... or I would have been real brainless by then! The vertigo and that first press…

How do you think about your pain?

I don't know about you but I am currently thinking a lot about pain right now... maybe what inspired this post since it is literally on my mind.

What we think about the nature of pain, our pain, how it affected our past, our present and our future... is a very important schema. We often think about it as 'coping' but it is far more than that isn't it? It is our very outlook on things. It is how we perceive our existence. How we conceive of our future. How we believe in a treatment plan. How much effort we put into the little coping strategies we might conceive of or even how actively we look for them. It can vastly change by our moods. By our stress level. By our circumstances. By our beliefs about pain itself. By lack of success in our treatment history. By fear and anxiety for our future. And sometimes just answering these questions can give us a good idea of what we really think and believe about pain and our illness. I did this very sort of thing when I was younger…

I sure failed to break that migraine... it darn well broke me

When you get locked in an acute migraine streak you pull out all your bag of tricks. And sometimes you win and you break free and think 'Heck I should remember that for next time'. But then your brain goes 'ha ha sucker that isn't going to fly next time... I'm onto that game plan.'

The story always starts off the same for me of course. Smacked up side the head with an acute migraine and I take a triptan. The story doesn't end because the triptan fails. Either it fails entirely or it only works somewhat and the migraine kicks into full gear later on that evening... usually just in time for me to Not sleep.

That is the twist to the story right there. Not always of course but sometimes right off the get go that acute migraine creates a Painsomnia situation. But I already took my triptan. I can't take it again. I'm well aware some people do, but due to the side effects of triptans for me I can't. I can't take my rescue medication because that is…

Trying to make things to drink...Is there such a thing as lemon posioning? Guess I'll find out.

So in my quest to find alternatives to decaffeinated diet coke to drink that do not have aspartame in them and also no sugar... I am looking to make things with stevia. Now the reason I avoid sugar is simply because it makes me ill and extremely nauseous. It has been really hard to find things to drink as an alternative. I end up going with tart things most of the time. But I really like the taste of diet coke so I seriously need alternatives. But while I like the concept of smoothies... I'm not going to be making smoothies all day. I'm just not. And, hell, I'm not even going to be buying all the ingredients to make smoothies to even satisfy my Thirst. So I need quick easy alternatives. And I have been hunting easy ones down. The two easiest seem to be lemonade and Ice Tea. Or flavored water... but haven't tried those yet.

So this is the sugar substitute I have chosen. I read somewhere that some stevia products can have a bitter metallic aftertaste depending on how the…

Migraines and suicide

Depression Part Two by Hyperboleandahalf This is a funny but very accurate description of what depression is like.I had a horrible sense of numbness after I tried to commit suicide because oddly enough after the suicide attempt I got depressed. I say that and people don't get it. What? Clearly you must have been depressed before. Isn't suicide all about depression? But suicide can be about pain and not depression. Or a form of depression linked to pain levels I suppose. When there is a great deal of chronic pain, aggravated by circumstances that enhance it so you can't even just Be in pain, you must suffer the intense rawness of it and focus, and work and function. Horrific torment.
This is an important issue for me clearly... given I did attempt suicide and given it is a hard topic for people to understand or talk about. However, I think it is vital because clearly while I was struggling to survive and desperate with pain others are as well. And the suicide risk with chro…

Was thinking about migraine scent triggers... and reminded me of my cat Charlie's problem

And it reminded of this recent adventure... it is a bit of a long story leading up to the awful scent trigger but it all starts with Charlie.

My youngest cat Charlie... look at those innocent eyes. They are tricking you.

Is a possessive little bugger. he loves snuggles. However, if I or my boyfriend dare to be cuddling Bobby, well then, he will not tolerate that if he sees it and will try to chase him away. He used to come into the bedroom around 2AM and sleep on the top of my pillow... sort of wrap around my head. Recently he began to sit on my back... or head and meow at me until I pet him because he knows I am awake, because I am always awake. And he will not be ignored. I try but he keeps meowing until he wakes up my boyfriend.

Just Charlie being Charlie, right? Well... Charlie also started recently peeing outside the litterbox. In front of us. Specifically in front of us. He would wait for our attention, find something around him and pee on it. What the hell right? I got him a b…

Yoga for people in pain video.. nice sit down routine

I finally got around to trying this out. You can look at the whole webinar series Here. This last one goes through a series of poses one can do with chronic pain. None of them are standing. I tried it out and liked it a lot. I could do this and then do my modified routine of my usual fifteen minutes of poses I can do. Or maybe alternating days would be better. He discusses in the beginning how we must hit that perfect pain spot... not under the pain where it will not help, or over our limit where this could cause problems with pain hypersensitivity but right at that spot where our body starts screaming HERE BE PAIN. Which is where I usually go with yoga. And people laugh at me when I say yoga is painful... it damn well is if you have chronic pain. And why I think it is the ideal exercise... I am capable of it, to some extent and I don't go way past where my limit is... you can tell right where the pain is and hold the pose just right There. The key of course is to keep your breath…

Painsomnia is kicking my ass

I have a deep personal knowledge about insomnia. Nothing says sleep dysfunction like fibromyalgia does. However, there is just the hard cutting edge to insomnia when you add in pain. Thus Painsomnia. Which is usually brought on by chronic migraines with me. You get caught in this rock and a hard place with chronic migraines because you cannot treat them. You can treat some of them and sometimes that is successful for part of the day and sometimes it is not. so it ends up being a lot of untreated migraine pain by the end of the night. That is what my sleeping pill is to help with unfortunately if the pain is acute it doesn't do a darn thing.

Painsomnia is this hash, brutal version of insomnia. A tormented version. Insomnia itself is maddening. Being sleep deprived all the time isn't a good thing. And seriously I've tried so many things to help with my sleep not worth listing them. And I will try many more. Pain though is different. If it cannot be treated it must be endure…

Finally found a name for that weird color thing that happened to my nailes... Terry's nails

I've been trying to figure out what the hell caused this discoloration. Thinking surely it has to be some sort of nutritional deficiency. Or lack of circulation.

THAT is what my nails look like.  All of them. Toenails included. But my big toes actually looks more bruised at the top. Weirdest thing. Not sure about the toes because not like I look at them, but the nails just happened over night. I mean they were pale all the time. And the luna part (pale arch at the nail bed) to the nail has been gone for years and years, which oddly enough if you ask people with FM who have had it a while that statistically you find is fairly common if puzzling. But the flush redness at the top was new and odd. The only reason I really noticed it I expect was because my fingers were tingling one morning and I was not sure if the peripheral neuropathy in my left had was getting worse, plus I had this lingering cold I was wondering if the asthma I was still trying to adjust my meds to might have some…

Comparative pain scale chart... pain scale charts generally irk me but this one is quite descriptive

Well, according to this pain scale I exist at a pain level of 7 and 8 all the time when it comes to migraines. But I suppose on average that is right even though I might rate them differently because I use a different pain scale... that chronic pain pain scale that is totally skewed by having chronic pain. And I tend to rate an average migraine as a 6 and when it begins to get nasty a 7 and when I'm really disabled by it a 8 and when I'm completely crippled by it and immobilized and cannot even think past the pain, have had it straight for days and days a 9. And the occasional 4 and 5 being half treated migraines or migraines I didn't need to treat and was able to 'function' or think through the pain. A migraine diary would be really repetitive if it was all 7,7,7,7,8,8,7,7,7,7,8,7. Even though on average, yeah, I exist on 7 and play around on 8 way too often.

I suppose with FM pain it fluctuated between a 3 ad a 7 which is what I would actually use in what I cal…

Cool shades... Study Finds That Tinted Specs Offer Migraine Relief- for hyperactivation visually

Not the only study by the way. I have read others but they were some time ago. "The research shows how coloured glasses tuned to each migraine sufferer work by normalizing activity in the brain. The researchers saw specific abnormal brain activity (known as hyperactivation) when migraine sufferers saw intense patterns. The tinted lenses considerably reduced the effect. Jie Huang and colleagues homed in on specific visual stimuli known to trigger migraines. These patterns, high contrast stripes or ‘gratings,’ can give the illusion of shape, colour and movement. These not only trigger migraines but also may cause seizures in those with photosensitive epilepsy." Study Finds That Tinted Specs Offer Migraine Relief

Yeah.. man, do I know about this. Which is why I turned to the Irlens Institute... because my persistent migraine auras cause some serious distortions which give the illusion of movement, where there is none, lines warp and shift, objects contort, my eyes do some wonky …

Insomnia and Tryptophan for sleep

I have some pretty insane insomnia and while the waking up at night and the unrefreshed sleep are issues they are issues that are somewhat handled by a sleeping pill I think... as in I think my sleep quality is better. They delayed onset insomnia isn't handled by the sleeping pill because it just takes me a long time to fall asleep and it isn't strong enough to knock me out... when you add in pain, well, then it isn't strong enough period because then I have some real sleep issues. You add in vertigo and I'm lucky if I sleep at all. So it is erratic. And it is a real issue when I work because it causes some real sleep deprivation which triggers some long stretches of migraines and well then that is a problem compounding a problem. There are medications that they can prescribe to 'enhance' the sleeping pill... and they enhance it all right... enhance it All Day Long. So while that actually is an option when I'm trying to break a brutal migraine streak like …

My brain hates the sun... has to be a new persistent migraine aura

Every single time I go outside into that bright distorting sunlight I have been experiencing the same phenomena. Now, I must say that brightness is not my friend. Neither is dimness... dimness makes the visual snow much more vivid and thick. Brightness is more distorting. So the air pulses more and lines wobble and shift more. It is damned hard to focus on anything really. And within moments of being outside I get a vivid and bright aura in the center of my vision. It is roughly circular and much like most auras it does that usual rotational motion of color and distortion like a moving colorful bruise, but this one is in the core of my vision and rotates in a circle. Unlike a scintillating scotoma it isn't scintillating really... not multicolored sparkles of light. Just translucent negative bruises of blue and black and indigo light and distorting clearness.

Now I have seen the damned thing in a bright room inside but to a milder degree so maybe not sunlight induced. But it certa…

Visual Snow: What is visual snow?

People often ask me about visual snow and so I have written an article (Visual Snow: What is this neurological disorder all about? about it to clarify what it is because it is a distinct phenomena from a migraine aura. Now many people, including myself, when I first was told what visual snow was I was told it was part of my persistent migraine aura. My neurologist simply said I have a persistent migraine aura and visual snow is a symptom of that. However, it isn't as simple as all that because visual snow doesn't behave like a migraine aura at all. When researchers did scans of the brain it didn't show as migraine aura like in the least. And while it occurs very often in people with migraines... it occurs in people with migraines with aura and migraines Without aura. So clearly it is something else entirely.

Now the reason someone can see a migraine aura is because seeing is more than the eye, it is the eyes and the brain. And visual snow seems to be a malfunction in the b…

Dr. Wolfe suggests Fibromyalgia is a spectrum disorder?

There is good reason for people with FM to be insanely frustrated with having an invisible disability because this one is significantly more invisible... it is Still debated among doctors as to whether it exists or not. What it is really. Is it more than one condition? Is it psychological? Is it just made up? Is it neurological? You would think with all the evidence you wouldn't be foolish enough to say nothing is going on with these patient's brains and bodies... but you'd be wrong, there are still doctors debating this. And that is why there is still this insane stigma of having this syndrome.

Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, …

Opiates and fibromyalgia- a treatment for severe pain but the brain works against us

Now no one in chronic pain wants to get to a point where they need painkillers to function. It isn't an ideal choice or a pleasant one or one very acceptable by doctors even if it is clear you need it. When it comes to chronic migraines some people use opiates as a rescue medication for when their triptan fails or when they they have maxed out triptan use, but opiates have the risk of rebound headaches so it isn't something you would even want to take often. Yet it is an option some end up having because triptans do not work for them or have adverse affects and they are unable to take anti-inflamtories... whatever the reason, they end up on this option because they must even if it is by far the least favored by doctors.

What about for fibromyalgia? Is it being taken for something similar like a rescue med... for when the pain is bad and not for pain treatment altogether? If so, if it is monitored is this such an issue? I don't take painkillers for FM so I'm not certain…

Wearing purple for Fibromyalgia Awareness Day May 12th

Wearing purple for Fibromyalgia Awareness Day!

And of course a had and sunglasses for migraine prevention as per normal.