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Showing posts from February, 2014

Your #migraine Tells

"Have you ever had a migraine symptom other people notice before you do?
My partner can tell when I have a migraine just by looking into my eyes—apparently I often get a glassy look and appear to be unfocused.
Others who are close to me (including my aforementioned partner) sometimes ask me, “Are you feeling okay?” or “Do you have a migraine?” before I have even realized for myself that I am not well. How is it they tell?
It turns out I usually give myself away in a few different ways:'"
my posturemy not being able to verbalize my thoughts quicklythe way my eyes look unfocusedthe way I am using my hand to rub my templethe way I am using my hand to rub my neckthe way I am slowly rocking my head back and forth trying to stretch my neck  Migraines are an invisible disability but just because they are Essentially invisible does not mean they do not have Tells to people who know you well. I always am aware I am getting a migraine myself but I also have tells that…

Life by inches

... since I have had a life.

Okay, since it has felt like I've had a life.

I can say that as a hermit. And the lesson would be for people with a chronic illness is to not let yourself become a hermit. Unfortunately it happens by inches. I like to say I live by inches because pain makes you move so slowly literally and in thought. It takes life by inches as well. Such that while you realize you make compromises in order to cope you do not exactly realize the magnitude of the lost right away.

For example, you realize it is insanely hard to function at work. It takes a great deal of energy and pain tolerance to endure. Which means you are not capable of anything on work days other than work. It also means weekends are often used for recuperation. If you do anything else it has to be planned. Never spontaneous. Never something that will take too much energy or require recovery... because that will leave you in a deficient for the work week. What this means is that my social life whic…

chatted with my insurance rehabilitation consultant

I talked to the fellow who is the rehabilitation consultant with my insurance company. He said my insurance company is interested in sending me to a place in the city two to three times a week that specializes in nutrition and exercise. I actually think this is a pretty intriguing idea. There is nothing wrong with either concept when it comes to chronic illness certainly. The problem is getting there two to three times a week. As in driving into the city. As in driving with migraines, likely triggering acute ones, possibly with visual issues... and the worst offense is the vertigo problems. I told him to hold off on it for a bit because my neuro also wants to work on the exercise angle and is, first, treating the vertigo. And partially the medication is having an effect. At least it is definitely having an effect on the drop attacks and floor instability feelings which are greatly reduced... unless I am a passenger for a trip into the city, which does tend to trigger that a little. An…

Estrogen And Progesterone Hormone Allergy Discovered #Migraine #Fibromyalgia

AUSTIN, Texas--Some women with menstrual cycle disorders like asthma and migraine headaches may be experiencing allergies to their own estrogen and progesterone hormones, Texas researchers have discovered.

Russell Roby, M.D., director of the Roby Institute, Dr. Dick Richardson, professor at The University of Texas at Austin, and Dr. Aristo Vojdani, of Immunosciences Lab, Inc. in California, found that female patients who experienced health changes during their menstrual cycle had higher levels of IgE antibodies against progesterone and estrogen than control subjects. An increase in IgE antibodies is typically associated with allergic response.The researchers published their findings in the March 27 issue of the American Journal of Reproductive Immunology.
"This is going to explain a lot of unexplained illnesses," says Roby, alumnus of The University of Texas at Austin. "The primary disorders are premenstrual asthma, menstrual migraines, interstitial cystitis…

Daily use of #triptans for #migraines?

Clearly not for me since I have side effects that suggest I am rather sensitive to this type of medication and more is definitely not better in my case. Yet I know of people with chronic migraines who would not function without the being able to take triptans daily. It enables them to function. They do not rebound, their migraines are better, not worse with the treatment and they have no side effects from the use of them daily.

Why does this seem astonishing? Because we are told rather rigidly that we should only take a maximum of three per week to avoid rebound headaches. If I did not have such an issue with side effects I would be tempted to go over that rule and see because as it stands we are left with four days of the week rather unaccounted for. Assumed the one we take is effective for the migraine day we treat. Some neurologists however say that while the Rebound rule is valid of OTC medications, opiates and NSAIDs it was never really firmly established with Triptans. For peopl…

Anticipating spring

As a kid I remember counting the space between the thunder and lightning to know how close a storm was. I remember those jokes 'You hear thunder... that is god bowling' or others. I use to lay there and ponder things like the expanse of the universe. If it began with a Bang, what was before? If it had an edge, what was beyond it? It should come to no surprise that I went on to study philosophy and loved metaphysics and cosmology. Still do. Those questions have more defined possibilities but no sure answers.

I do know that I have always been agnostic. That the mysteries of the universe have made me slightly agnostic even if my reasoning and humanity make me lean towards atheism quite a bit. You can love the majesty of it all without adding anything to your ontology.

Now when I look at a sky lit with all that lightning I think... that is what is inside my head right now. I think the crashing, cracking, rumble of thunder and the splitting of the sky with bolts of light... maybe …

Going up stairs is a danger zone #vertigo

I fell going up the stairs today. I had felt a little wobbly and dizzy. Off-kilter as it was. Then just started with the internal vertigo and somehow ended up planted forward on my hands and knees. I got up and began to go up and slammed into the wall, which likely accounts for how I fell to begin with... as soon as you get that falling to the side sensation your body 'compensates' poorly by flinging you in some random direction which usually makes the whole situation worse. Needless the say I was rather carefully holding the wall on the remainder of the climb.

(X) This is the best imagine I have seen to show a person what it feels like to walk with vertigo. When you get a drop attack... the ground feels like it is gone beneath on leg and you just fall in that direction. And this is sort of the mild version of that type of vertigo... the ground feels like moosh. Like every step you take your feet are sinking into the ground just a little, or a lot, and the ground is shifting a …

When someone wears too much perfume and you have a migraine...

(Gif From)

*gag* *gasp* 
I can have such a sensitive sense of smell with migraines. It is not Just with cologne and perfume. It it with all things. But fragrances can be sharp, make the migraine worse, trigger a migraine or trigger a bout of nausea the likes you never want to encounter.
I avoid perfume counters like the plague. Don't want to walk into that mixture of hell scents thank you.
I have problems buying candles because while I generally know which my nose finds insanely offensive I am tricked by the names of some of them or some sound rather pleasant and turn out to be vastly unpleasant to me. 
I know people are sensitive about their perfumes. They want to smell nice. They want to wear them. Even though the contents of such concoctions can bother people with asthma, migraines, allergies and a few other conditions as well. It is why some workplaces and other public places are now fragrance free. Don't blame that on me and my migraines blame that one a significant part…

I loath morning #migraines

I got out of bed and...

The pain just intensified beyond belief. Not too pleased about it but pretty non-functional. So it is indeed a triptan day. And a couch one at that.

I just hope the triptan kicked in and works. Hard to say when I woke up with it already in gear so missed that perfect within 'fifteen minutes' of the migraine beginning.

Feel like my brain is rejecting my head...

And yes in a brainless sort of way where I want to spell and my brain refusing to understand what words are. But also in a migraine pain sort of way. Like my brain just wants to run screaming from my head. Jump ship. But here is the thing... it is the cause of the problem. So it has no cause for complaints in the equation here. If anything the rest of my body should be ticked at my brain.

It is in fact the pain part of the party that has been getting to me lately due to weather fluctuations. Damn weather just can't be stable lately so the migraines are quite variable in intensity and can hit quite early unfortunately. But last few days the visual auras have also been rather warpy. Interfering with my capacity to read and That, my friends, irks the hell out of me. Reading is my favorite pain distraction and I have the capacity to do so with a great deal of pain... up to the upper levels in fact, where pain begins to interfere with all level of functioning. Then I am screwed, but t…

A question of Viamin D for pain and how much

Personally I am on 5000iu and apparently this is the amount everyone should be on, not taking into account my health.

"Cannell references a relatively good study examining the vitamin D levels of people who get plenty of sun exposure, which was published by Luxwolda et al. [2012] in the British Journal of Nutrition. The researchers discovered that healthy persons with traditional outdoor lifestyles, living around the African equator (the “cradle of mankind”), have average circulating vitamin D levels — ie, 25(OH)D — of 46 ng/mL (115 nmol/L).
Cannell remarks that most people do not have their blood tested regularly for vitamin D, so a recommended daily dose of supplemental vitamin D is needed that (a) is easy to obtain at pharmacies, (b) will get at least 97% of people above 30 ng/mL of 25(OH)D and most persons at 40-to-50 ng/mL, and (d) will not cause anyone to reach toxic levels. Besides those 4 goals, Cannell also takes into account body weight; since, apart from ge…

A Nation in Pain: Healing Our Biggest Health Problem book review by Pain-Topics

A Nation in Pain: Healing our Biggest Health Plan "author Judy Foreman provides a deeply researched account of today’s chronic pain crisis and reasons behind it, and she discusses some solutions that could be within reach. Far more than just a symptom, Foreman explains, chronic pain can be a disease in its own right, and the failure to manage pain better in the U.S. and other countries worldwide may be tantamount to torture.
A great many (perhaps, too many) books have been written on the subject of pain; all are well-intentioned and often they are self-published. While some of the books are of interest, most appear to be riddled with personal opinion, biased perspectives, and/or misinformation rather than being guided by facts and solid evidence. As a journalist and investigative health reporter, Foreman has done a noteworthy job of crafting easy-to-read text that also is excellently documented with enough citations of her evidentiary sources to satisfy even the mo…

When brain fog Doesn't prevent you from thinking for once....

Wow! Clarity of thought! Eureka moments abound! And I remembered to put the clothes in the drier.


It has been a good brain few days. Still have a lot of physical fatigue but have gotten that old brain ball kicking it up. Maybe because I lured it in with doing some things it likes to think about like cosmology and psychology by watching a documentary every night for the last week. Great stuff! Gets you thinking, which was the point. So apparently I have to tease it with some of the things I enjoy. Maybe I should pick up some more philosophy books I have been meaning to buy. That will get it going.

Oliver Sacks: What hallucination reveals about our minds

This is the whole playlist it looks like. So click the playlist icon at the bottom of the screen to the right and the Oliver Sacks interview is second last on here. However, you can check out the rest as well... I'm going to leave the link as is as the entire playlist is interesting to me anyway.

You know you have Visual Snow when....

You wonder how clear is vision anyway?

I have had visual snow since I was a teenager. I remember when I began getting it. I could see this field of static against walls and in particular it would become more vivid at twilight and at night. Twilight would become this more surreal appearing time it seemed to me with this thicker static making the air seem pixelized. It wasn't my actual eyes as I had regular check ups there. So I assumed it was reality. Even though no one else perceived it. I had not experienced a migraine yet that I know of. I used to get wicked headaches but I do not know if they were migraines. I do know I experienced corona auras then, so I likely had silent migraines back then so that is likely the cause of the visual snow. And when I began getting migraines with aura, which were quite distinct in my early twenties the visual snow and other persistent migraine auras got more intense.

By the time the migraines became chronic the persistent migraine auras were by …

Tinnitus Treatment - Causes and treatment of tinnitus

I get tinnitus that is pretty constant, however, can get worse with a migraine. I am not sure what you want to blame for it. Chronic migraines. Fibromyalgia. Visual snow syndrome. Or an overlap symptom from them all. However, I have had it for a very, very long time. I can remember it as a teenager. So right around the time the visual snow poofed into existence so did the tinnitus. By then the fibro already existed but the migraines with aura did not.

I do wonder if you have tinnitus from these sorts of conditions if it is like having vertigo from migraines... where they can't do rehabilitation for it when you still have the condition itself, such as migraines, not managed at all. Such that you get rid of the tinnitus only to have it reappear not to long after with the next migraine, getting more and more constant? Or once it is gone it stays gone? I do know no neuro ever suggests doing anything about it when it comes to migraines, even if my is not just with the migraines. Perha…

#ValentinesDay !

It is Valentine's Day people!

Time to celebrate the Love!

I actually have a lot I could say about relationships and chronic illness on a serious note but I have said it before. I will say that I am not much of a Valentine's person really. Not much of a flowers and chocolates person. I do tend to get them mind you. Also am not the sort to wear jewelry.  My boyfriend has understood this so when he gets it for me it tends to be simplistic in design. Something he knows I will wear. Something I can just wear and forget about. I do tend to forget I have them to wear though. Used to have these tiny hoop sleeper earrings I never, ever took out until I had a CAT scan and had to... and lost one. Now I never wear earrings because I forget that I have them to wear. So clearly this isn't a thing one often buys me. He got me a necklace this year which is quite nice. It is a two heart design. I have one that is one heart that I never take off, literally, but I cannot wear it with this on…

When I experience sudden vertigo...

Save yourself! The world is falling!

Dive for the nearest wall before the floor disappears! Wait, the floor is still there? Weird, felt like it was gone.

World Health Organization (WHO) classification of #fibromyalgia and #ME as “mental and behavioral disorders.” was an inaccurate article posted online

Liberty Voice came out with this article about WHO (World Health Organization) regarding Fibromyalgia classification. Please keep in mind the article has some inaccuracies and I am posting it just in case people have seen it. However do find it interesting in how they discuss the classifications. And the very fact that the stigma with FM and other conditions is so real this sort of thing is a possibility. We see it floated around by more than one researcher and the potential harm to that thinking is pretty serious.  Below you will see a twitter response from WHO regarding the article.

When words cannot express what it feels like to have a migraine...

You come across a GIF like this... So imagine that... In your head.

Trigemina expands Phase II trial of TI-001 for chronic migraine

Research Update On new abortive coming up the pipe line
"US-based biopharmaceutical firm Trigemina has expanded its Phase II clinical trial for TI-001, intranasal oxytocin, beyond Chile to include sites in Brisbane and Adelaide, Australia.
The Phase II TRIG-05 trial is assessing TI-001, an investigational, nasally-delivered oxytocin therapeutic currently being examined to determine its efficacy, tolerability, and safety in chronic migraine patients.
Secondary endpoints in the trial include determining the best Phase III dosage and exploring interlukin-6 (IL-6) levels as a potential biomarker for predicting efficacy.
About 96 patients are expected to be enrolled in the placebo-controlled, double-blind, randomized-withdrawal and enrollment enriched TRIG-05 clinical trial.
If approved by the US Food and Drug Administration (FDA), TI-001 could be the first non-invasive treatment approved for chronic migraine.
Trigemina president and CEO Charles Yeomans said the expansion of the…