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:'"
  1. my posture
  2. my not being able to verbalize my thoughts quickly
  3. the way my eyes look unfocused
  4. the way I am using my hand to rub my temple
  5. the way I am using my hand to rub my neck
  6. the 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 other people can also tell fairly early on that I am getting a migraine.

Mine are:

  • The brain fog and aphasia that really can kick in. Giving me the sudden case of the stupids. Unable to finish sentences. Unable to say words. Unable to say words properly. Real good indication I am getting a migraine as it is stronger and more defined than fibrofog which can be the same but milder.
  • My eyes get glazed and unfocused. I have had numerous people who know me well comment on my eyes as a migraine tell.
  • I will rub the left side of my neck.
  • I will roll my neck and try to ease the pain in it.

As stoic as I like to be people can pick up on the signals I give out if they know me. Because if they ask me you know what I will say...

 But the fact is I have migraines all the time and the fact is I do not always have these tells. Today I have a wicked acute migraine which got me thinking about this because my neck is killing me. I am sitting here and I keep rubbing it. In fact I rubbed menthol cream all over it. And a migraine balm along my jaw, forehead and temples. And I have been rolling my neck to try and ease the pain. And keeping my jaw slightly open to ease That pain. But I have been alert and I had no aphasia issues. So the symptoms change and if we show the symptoms also changes.

It has surprised me in the past when people have picked up on the fact I had a migraine when I thought I showed no indication of it. They said they could see it in my eyes. Yet other times I would have just a severely acute migraine and people were oblivious to it. But it didn't matter in those cases because I was at work, whether people noticed or not, I still had to hide the pain. You have to mask it in order to function and in front of customers. It was nice to know though that people were not completely oblivious to your suffering, you know? That the pain was not always completely invisible. Even though you had to hide it, it was nice to know people understood it was there and was difficult. And most of the people I worked with were great people. Very empathetic to the fact it was extremely difficult for me. Some really picked up on some of the odder symptoms... like the aphasia and so forth. A loathed having to constantly work under those conditions but they were a great bunch of people to work with. The company could have been a little more accommodating however, but such is life. They actually said it wasn't even a disability and they could not accommodate it. So to them it literally was invisible. To them it was simply something to be endured, preferably silently. And that is where invisible disabilities are a problem... they are invisible to some people such that they do not see them or care to acknowledge them. And to others they do see them and try to understand them, such that they do pick up on your tells because they can see the suffering and pain... some of the time.

I don't like my loved ones to see me suffering or in pain but it is a good thing that they can. Because then they know where you are at pain level wise. And it is good that they understand level of functioning at that moment, level of pain, what you need at that moment. Very helpful things. When I am in acute pain my spouse will cook dinner... just takes over and tells me to lie down before I fall down! And he lets me keep some lights off, rather than needing to, well, see. And he tries to be as quiet as possible. If he didn't know then he wouldn't do any of those things.

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 which had been healthy, if in moderation, in my twenties, became sporadic in my late twenties and then next to nothing in my early thirties and then pretty much nothing in my mid-thirties. Partly because I was working full time and partly because pain increased over time. So friends diminished. And even activities with my spouse outside of the house diminished.

That is when I knew my life was more of an existence. That I was really just surviving pain day to day rather than living. However, there really was no way out of this cycle. No way to improve on the situation when I was exhausted by the daily battle and had no pain management and no doctor willing to help with pain management. So no life.

So my recommendation is never let it get to that point. Hold onto those friends. Force yourself to go out and do something, even if it is a small coffee break with a friend, once a week. It is very good for emotional and mental wellbeing. But good to have peeps to do it with. Or family. I replaced my social life with online friends. And I definitely socialized with family. And those both count. However, I still say keep friends who understand your limitations. Also you can just Be out and about around people. I was told to just go out and sit in cafes to be around people and out of the house... even that would be beneficial.

Anyway, things have changed a little for me in the last year because I have not been working. It makes a large impact to get out of that survival mode. You can make some changes because of that very fact. I have been able to co for coffee with my mom more often. I have been able to make new acquaintances and go play cards once every couple of weeks consistently. I went on a short trip with my spouse into the mountains as well last year. Short but very pleasant, even if migraines were present and accounted for. Either way it makes an impact on mood and your reality to get out of that survival mode and lower the pain a fraction. Be able to sleep a little more.

Yet not working makes you feel like you are on pause from life. I do more things for certain than I was even capable of before. I feel better than I have in years and years. Yet I feel more isolated and I feel like I am paused. Waiting. I also feel like there are possibilities. And possibilities were things I did not have before. I was locked in this losing pain battle and hope ceased to exist in that equation. At least I have possibilities I can try to manifest. That I have time and energy to try and manifest.

The hope being... more Life. The hope is always that with chronic pain we can decease the pain, decrease suffering and increase the quality of life. What sort of compromises we have to make for those ends is the question. That I would ever be off work this long was never something I had ever considered. That it was necessary was quite obvious. I would like to think there are possibilities for some sort of flexible work in my future. I like to keep my mind occupied and I think that is something we can all relate to. This struggle with what to do when we cannot do what we did. I do have my writing which does keep sane at least.

I still think this chronic pain lifestyle is a life by inches. Just crawling along with the pain. I just think it is easier to stay sane when not working. And I hope for the possibility to manage the pain such that it will allow for me to work without going insane. Is that too much to ask for? Maybe.

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. And I still get internal vertigo. So I am not too sure it is a consistent enough improvement for me to be able to handle motion triggers regularly and be able to drive around, without spacial perception getting all wonky or getting a sudden drop attack or when I arrive having more issues and then not being able to leave. However I am optimistic about the improvement. Yet even if it does improve I rather do not like driving into the city with migraines. Your focus is compromised with pain and I am unfamiliar with that enviroment. In town it is not too much of an issue but add in a lot of traffic and unfamiliar roads and it can be rather ... well, lets just say not good at times.

Yet I will have the treatment the neuro has planned. And I do have the pain clinic lined up coming up soon as well. All along the same timeline. So no need to throw something else in there quite yet. I am open to it especially if I can dampen the vertigo significantly. I like the idea of guidance in the nutrition department along with whatever I will have going on in the exercise department.

Also he mentioned that if I do not want to return to my previous career that they are willing to pay me out to peruse something else. He asked if I believed I was ready for something like that. I am not... at this time. I wonder though if I engage in all these programs to improve my overall wellbeing that I might see enough improvement to work again in some capacity. I feel optimistic about that idea. I suppose we will see about that. I mean I certainly have at least seen some progress with the vertigo and that is at least something. If I do take this payout I then have to decide what should I do and what Can I do?

I cannot have a 9 to 5 job that is inflexible or I will end up where I was even if I see improvement it will diminish rapidly in that sort of enviroment. In perfect conditions improvement will be awesome, but work is not perfect conditions. While not working I notice improvement just from lack of sleep deprivation.

So either I find a job in my field that offers that sort of flexibility which are very few and far between. Or I retrain for a different job that does offer that sort of flexibility. So the question is what sort of job can you retrain for that you can either telecommute for or do in a home office on a contract basis? If I can figure this out before hand I could perhaps do some prelearning for free.

I have never really thought about this before. Well not since I went to university with a goal in mind that migraines rather interfered with that is. So I have a few degrees but they are of little use for work at home. I will look at a site I use and see what sort of jobs are posted for freelancers to see what sort of work is available.

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 and fibromyalgia. We have no idea what causes these things, but they are definitely linked to hormonal cycles."

The researchers studied blood samples from healthy women and women who experienced symptoms associated with their menstrual cycles, like asthma, migraines and joint pain. A significant number of patients in the latter group showed high levels of IgG, IgM and IgE antibodies against estrogen and progesterone.
Antibodies play a critical role in immune response and are produced by the body in response to antigens, molecules the body recognizes as foreign.
Hormones haven't been implicated in allergic response in the past, because it was thought that hormone molecules were too small to create an allergic response. The researchers found that estrogen and progesterone combine with other proteins and that the hormone part of the molecular complex is recognized as the antigen.

"We have shown that IgE antibodies, Type 1-immediate allergy antibodies, are produced against estrogen and progesterone," says Roby. "This opens a whole new area of treatment possibilities."
Roby says that in the process of the clinical study, it was found that symptoms could be diminished by very low concentrations of progesterone, which served both as a diagnostic feature and for symptomatic relief when needed. Science Daily
How about that?  Pretty interesting given I have asthma, FM and menstrual migraines. I have not tried the progesterone pill for menstrual migraines yet... after the depo shot experiment not sure I want to. However, maybe worth a shot. Fascinating study however.

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 people who have run through a great deal of preventatives and nothing works, this form of management can apparently be effective. If it is ever considered. That Rebound rule is a firmly established believe among neuros, even if patients may be skeptical that we all respond the same way for every single medication.

"A small number of my patients take triptan medications daily. Many doctors, including neurologists and headache specialists think that taking these drugs daily makes headaches worse, resulting in rebound, or medication overuse headaches (MOH). However, there is no evidence to support this view. Sumatriptan (Imitrex, Treximet), rizatriptan (Maxalt), zolmitriptan (Zomig), naratriptan (Amerge), eletriptan (Relpax), almotriptan (Axert), and frovatriptan (Frova) have revolutionized the treatment of migraines. I started my career in 1986, five years before the introduction of sumatriptan when treatment options were limited to ergots with and without caffeine (Cafergot), barbiturates with caffeine and acetaminophen (Fioricet), and narcotic or opioid drugs (codeine, Vicodin, Percocet). These drugs were not only ineffective for many migraine sufferers, but they also made headaches worse. Dr. Richard Lipton and his colleagues followed over 8,000 patients with migraine headaches for one year. Results of their study showed that taking barbiturates (Fioricet, Fiorinal) and narcotic pain killers increased the risk of migraines become more frequent and even daily and resulting in chronic migraines. We know from many other studies that withdrawal from caffeine and narcotics can result in headaches. However, taking triptans and non-steroidal anti-inflammatory drugs (NSAIDs), such as aspirin (Migralex), naproxen (Aleve), ibuprofen (Advil, Motrin) does not lead to worsening of headaches. Only those patients who were taking NSAIDs very frequently to begin with were more likely to develop even more frequent headaches at the end of the year. Aspirin, in fact, was found to have preventive properties – if you were taking aspirin for your migraines at the beginning of the year you were less likely to have worsening of your headaches by the end of the year." The New York Headache Blog

And we see where the issue is. It is an established rule they are following based on old research. Then they simply applied it to everything. I for one was put on NSAIDs once to replace triptans, as I mentioned those side effects do once in a while disturb doctors (not all, but the good ones, yes) and I had no rebound headaches at all from taking the NSAIDs regularly. It was also a treatment for my menstrual migraines to take the NSAIDs daily for the duration of those brutal long lasting migraines. And effective really. I had side effects from them unfortunately but not rebound headaches. In fact, I didn't even know at the time doctors even considered that possible but when i read that it was it made me wonder if then we do not respond to medications the same way in regards to this Rebound rule... given I was on two different NSAIDs regularly for a good duration... until a GI bleed that is. They helped with the migraines. Didn't make them worse. Didn't make them more frequent. However, I also know codeine, in the form of T3s is a horrible rescue medication for me because it always gives me an after headache. Can't use it two days in a row, more than one a day, more than a couple days a week. Which rather makes it a piss poor choice for a rescue medication given it isn't that strong to begin with and causes something similar to what it is in fact helping with. Not my preference. Tramacet on the other hand does not. Maybe if I used it more than three days a week it would as well, but in moderation I have never had that same response to that as a rescue medication. Nevertheless, I understand the need to be wary of my use with painkillers as I understand the potential of rebound headaches. I know what they feel like though. And definitely do not get them with NSAIDs.

"“Daily triptan use for intractable migraine” is the title of a report by Dr. Egilius Spierings published in the latest issue of the journal Headache. This is a controversial topic, which I addressed in a previous post. Dr. Spierings, who is affiliated with both Tufts Medical Center and Harvard Medical School presents a case of a 50-year-old woman who failed trials of multiple preventive medications. This woman responded well to sumatriptan, 100 mg, which she took daily and occasionally twice a day with excellent relief and no side effects. Dr. Spierings discusses the evidence for Medication Overuse Headaches (MOH), which is common with caffeine-containing drugs, butalbital (a barbiturate), and opioid drugs (narcotics). It is less clear whether triptans cause MOH and he mentions that most patients who end up taking a daily triptan do so only after they failed many preventive (prophylactic) drugs and after they discover that they can have a normal life if they take a triptan daily. This applies not only to sumatriptan, but any other similar drug, such as Amerge (naratriptan), Zomig (zolmitriptan), Maxalt (rizatriptan), Relpax (eletriptan), and other. After 20 years of being on the market, we have no evidence that these drugs have any long-term side effects. In Europe several of these drugs are sold without a prescription. The major obstacle to their daily use has been the cost. However, several of these medications are now available in a generic form and a 100 mg sumatriptan tablet costs as little as $1.50." The New York Headache Blog

The fact is assuming you have a neuro open minded enough to try daily triptans for you because it literally works for you and enables you to function... cost is a factor. It can be a battle to get an insurance company to pay for anything over 9 pills a month. Here in Canada I recall when i went over that I just had to have my doctor sign something to say he was aware of the 'risks' associated with my using more than 9 a month. That went into the file and I am covered. However, it is rare if ever I do so. I would I assure you if it were not for side effects. They are the most effective medication to help with migraines. End of story. However my side effects are not in the normal range and get worse the more I use within a close time frame so it isn't an option, which I assume is the case with some people who have similar side effects... apparently that isn't that common. Anyway, I am not sure all Canadian insurance companies are the same. Coverage differs on many of them for one thing and if you are forking out even a fraction of the cost, let alone all of it, this is a costly venture. Triptans are not cheap. In the US insurance companies are even more rigid about the 9 a month rule it seems. Maybe neuros writing letters to our insurance companies would help, maybe we would have to pay out of pocket. Maybe if we could afford that it would indeed be worth it if it helped us function on a daily basis. Generics certainly do help with this issue.

Either way with chronic migraines where many treatments and preventatives have been explored I do not see why this is not an option that is considered. With careful supervision at first of course to monitor response.

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 one of the gods has a one hell of a migraine.

I have always been so impressed with storms. Love watching a good storm roll its way in. It is hard to enjoy it though when I feel it so keenly before it even hits. Those weather triggers are brutal, harsh and fast.

One storm triggers another.

I think of this as spring will be rolling in after a long harsh winter. A winter few of us have appreciated with its brutal temperatures, volatile temperatures and epic storms.  We want spring to come. For the snow to melt. Temperatures to rise. Green grass and flowers.

Spring used to be my favorite season (and not just because my birthday falls in there... maybe slightly because of that.) I loath winter so much that spring just boosted my spirits. I love the crispness to the air and how I can just see all that snow diminish as everything begins to flourish. But before the dry heat comes down and that can be too much for me to handle. It is no longer my favorite season. Those spring storms... while wonderful to watch are brutal on the brain. The temperature fluctuations are as well. It is just to unstable of a season to really enjoy with chronic migraines. Yet, behind Fall, with its nice even crisp temperatures and lovely colors it is still my second favorite season.

I still anticipate it every year with a strong yearning simply because I loath winter. I particularly loath this winter. I am so done with this winter.

But it is a little lighter each day. A little warmer. A spring is coming.

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.

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 bit as you do. So it is very unstable. And you can lurch and stagger but either way, you are careful when you walk. And it is common for me to get this also when lying down so I feel this dropping sensation in a constant pulse... drop, stable, drop, stable. Drives me nuts and impossible to sleep like that.

But internal vertigo is more what one would expect when one hears the word. You feel spinning sensation in your head. So you turn or move, and your brain whirls. And you just stagger sideways. Sometimes unable to stabilize yourself, such as today, and just falling.

External vertigo is where the enviroment whirls when you move. So turn your head and the room whirls. I think a lot of people are familiar with this one if they have ever gotten drunk. So they can understand it is not pleasant. Even in mild form it is not pleasant as your eyes do not want to track properly and the world just moves a bit with your movements.

Then we can also experience things called 'swaying' and just like it sounds we 'feel' motion when sitting or standing still that causes us to actually sway. It can cause you to sway almost off your chair or sway backwards when standing such that you again stagger to catch yourself from falling. Swaying though is very common and is just this constant sensation of motion. Most vertigo I find is triggered by motion but the swaying type is easily triggered by even a little motion. A very short car ride and I find I feel the motion of the vehicle after sitting or standing and will sway. More of a sensation the longer the duration of a car ride, but then more likely another form of vertigo will be triggered as well, like drop attacks.

My spouse is determined to put rails on the stairs due to my vertigo and falling issues. I'm just glad I didn't fall going down. Usually if you fall going down stairs you would automatically tip yourself backwards to your butt... but with vertigo you might 'compensate' for the sensation that caused the initial disorientation and toss yourself forwards instinctively. And that would be bad. I do know when it comes to slipping on anything I tend to compensate in the wrong way. I begin to slip and my brain gets vastly disorientated by the sudden motion of this and just completely compensates in the wrong way. It has led to some real nasty spills where I cannot fathom how I even managed it. It is like my body has no understanding of where it is in space. And if you have any sudden movement it is just vastly confused by this and just tosses you in the nearest direction it can think of. Rather than say trying to balance itself or the nearest soft surface.

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 of the population having a problem with them in different ways. 

My workplace would not have gone fragrance free for me. They hardly would have done anything significant for my health benefit. So it could be difficult. I just knew who wore perfume I could not tolerate and therefore could not stand near and needed to avoid most of the time. But I could not avoid customers and I could not have my office door open when they were in my office. Those two things combined? Could make for a toxic situation with some people who I swear dumped their perfume bottle on themselves before walking out the door. It Lingers long after they are gone such that even then you don't want to stay in there... wishing you could fumigate it of the perfume somehow.

So with a migraine I Notice a Lot of scents. Scents I should not notice at all become magnified. It is a horrible migraine symptom as far as I am concerned. Ruins my appetite I might add. Some things smell too much so I just think they are 'off' or they make my stomach roll. Point is it can do the same with some stronger perfumes. So this would be why I might back a few steps from someone. Stand down wind. Not hug people. But generally I don't think it is a big deal people wear a normal amount of perfume or cologne. 

But too much is just damn too Much. My nose is already on hyper-drive. I am swarmed by the scent of it. Drowning in it. Makes me want to toss my cookies on their shoes. I can't just back up a few paces because the fume cloud they have created is in the whole damn room. Uhg.

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 then, screwed to do anything. But when your eyes are all shifting, warping and the visual snow is intense it can be difficult to focus on worse. Plus a lot of halos and double vision. When the auras get bad it is never One visual effect, it is more than a few smooshed together. But the whole field warping effect is the problematic one.

So clearly my brain is rejecting the rest of my body. It is failing to accept it's role. Failing to take. Need a new one.

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 genetics, body weight is a significant determinant of vitamin D levels. The more a person weighs, the more vitamin D they need to take.
In support of this, Cannell describes a large study by Robert Heaney and colleagues that examined the relationship of body size and vitamin D status [see, Drincic et al. 2012]. These investigators found that, for a normal weight adult, 5,000 IU/day of total vitamin D input was needed to obtain a 25(OH)D level of 40 ng/mL. Cannell emphasizes that this pertains to an “average adult” and the final vitamin D level obtained by any dose also depends on baseline level, sun exposure, diet, and genetics.
More specifically, the researchers calculated from their data that a total input of 70-80 IU/day/kg-of-body-weight is needed to achieve 25(OH)D of 40 ng/mL. That works out to be about 35 IU/day/pound; so, a 100 pound woman would need 3,500 IU/day of total input, whereas a 300 pound man would need 10,500 IU/day. Note: this is total input from all sources, including sunlight, diet, and supplements.
Taking all of the above factors into account — and considering that most persons in modern society do not acquire much vitamin D from sunlight or diet — Cannell concludes that 5,000 IU/day of vitamin D supplementation is about right for the average adult." (Pain-Topics)

Pain-topics has three references articles about vitamin D and pain:

  • Vitamin D – A Neglected 'Analgesic' for Chronic Musculoskeletal Pain:
    An Evidence-Based Review & Clinical Practice Guidance
          > Full Report [50-pages; PDF Here]
          > Practitioner Briefing [7-pages; PDF Here]
  • PPM Journal Article: Vitamin D for Chronic Pain [13-pages; PDF Here]
  • Vitamin D: A Champion of Pain Relief — Patient Brochure [6-pages; PDF Here
Pain-topics concludes:
  • Vitamin D deficiencies have been associated with a variety of chronic pain conditions, such as back pain, osteoarthritis, fibromyalgia, inflammatory bowel disease, and others. In many cases, research has demonstrated the efficacy and safety of vitamin D3 supplementation in helping to alleviate pain and to improve functionality and quality of life.
  • At the same time, much of the research has been of relatively poor quality and biased in one way or another. Larger-scale, randomized, controlled trials with higher vitamin D dosing and adequate followup times are still needed.
  • there are inconsistencies in the quality and quantity of vitamin D content in over-the-counter supplements, and higher oral dosages (eg, 1,000 IU D3 tablets) are not available in some countries. Daily oral dosing of vitamin D is more consistent with “natural” intake than once-weekly or less frequent megadoses administered orally or via injection.
  • The optimal dose of vitamin D3 supplementation and subsequent 25(OH)D levels in persons with pain have not been determined. While the 5,000 IU/day and ≥40 ng/mL 25(OH)D recommended above by Cannell may be adequate for healthy persons, this could be suboptimal in most cases for helping to ameliorate painful conditions. Research to date has not fully explored effects of more adequate dosing, long-term in pain management.
  • Blood tests for vitamin D — ie, 25(OH)D serum-level assay — can be costly and inconsistent from one laboratory to another, but this test is the only way to know if supplementation frequency and amount are adequate for individual patients.
  • Aside from the other factors that may ultimately influence 25(OH)D levels, possible interactions with medications — eg, antacids, anticonvulsants, corticosteroids, and others — may reduce the potency of vitamin D. Malabsorption syndromes and bariatric procedures have been associated with vitamin D insufficiency, as have alcohol consumption and tobacco smoking.
  • Most persons get adequate calcium from their diet and do not need extra calcium in conjunction with vitamin D supplementation, unless specifically indicated. 

So essentially everyone should be taking 5000 iu of vitamin D... but for chronic pain that might be different. It could be higher. And our medications may interfere with the absorption of it.So it is hard to say if 5000iu will be beneficial pay wise, but likely a good idea given everyone should be taking it anyway. Given I am Canadian and also avoid sunlight a good idea just for those facts.

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 most skeptical readers — which is quite rare for a book intended for both lay and professional audiences, as is A Nation in Pain." (Pain-Topic News)
"Overall, Foreman suggests that there is an appalling mismatch between what people in pain need and what healthcare providers know about pain and its treatment — chronic pain in particular. She found that physicians in the U.S. typically receive only about 9 hours of education specifically on pain during 4 years of medical school — even veterinarians are better educated on pain management."
Here is more of Pain-topic review of the books which they highly recommend and sounds quite interesting. More if I were in the US, but still for a book on Chronic pain for an American looks fascinating.

"Foreman devotes 2 chapters to the destructive "Opioid Wars," which have led to a misguided demonization of prescription opioid analgesics. Her discussion of this highly controversial topic is among the most fairly-balanced and evidence-based that we have seen. She observes that there are 2 separate public health “emergencies,” sometimes called “epidemics”: (a) undertreated pain influenced by some degree of limited access to opioids, and (b) the abuse of opioid analgesics for illegal or nonmedical purposes. She stresses, “whether the term ‘epidemic’ truly applies here is debatable.”
Foreman recognizes that there are many sides to the ongoing debate and relatively little hard evidence one way or the other. As she states, “The complex truth is that opioids, especially opioids for long-term use in chronic non-cancer pain, are probably both under-prescribed for some patients and overprescribed for others.” Opioids are not a solution for all patients or all types of severe pain, she acknowledges, and at best the pain relief they afford is only partial. She accordingly emphasizes:
“Opioids, in other words, may be necessary, but they are rarely sufficient. What I am saying is that government drug policy seems to be lopsided, politicized, stacked against legitimate pain patients, and fueled by public hysteria over abuse of prescription pain relievers. That hysteria, in turn, is fueled by often-misleading media coverage.”
Those few sentences say a great deal about what has gone awry with concerns about opioid analgesics today. In support of those statements, Foreman laces her discussion with references to relevant research studies, while also distinguishing between good- versus poor-quality evidence — an objectively analytical perspective that is missing in most other books and articles on the subject.
As Foreman observes, the controversy over prescription analgesics is a “highly emotional struggle in which much of the ‘debate’ is driven not by scientific facts but by dueling anecdotes of horror.” She aptly denounces a misguided popular press, prejudiced bureaucrats, and a small cadre of fear-mongering medical professionals for trying to foist a negatively slanted view of opioid pain relievers on the public as well as on the healthcare community at large. In balance, Foreman also tells how over-exuberant marketing by drug manufacturers has contributed to problematic analgesic prescribing and use.
Throughout the book various therapeutic approaches for managing chronic pain are discussed, including new developments still in preclinical or clinical trial stages. Additionally, a whole chapter is devoted to marijuana (“The Weed America Loves to Hate”) and another focuses on exercise (“The Real Magic Bullet”). A range of CAM (Complementary & Alternative Medicine) therapies also are covered, with balanced discussions of pro and con research evidence for each."

Click on the book or highlighted title to see where you can buy it and other reviews.

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 themselves pretty distorted and wonky. That makes reality pretty unpredictable in appearance for sure. Lines wobble and shake. Things can shimmer. Heat waves appear. Vortexes come and go. Blots and blobs of light appear and distort. Halos surround light sources.

But today I was downstairs having a smoke... as I am in the process of quitting, this making it harder to smoke so out of my comfort zone. Anyway, it is brighter down there and I was just looking at the blank white wall which quite makes the snow appear quite bright and vibrant in appearance. So there is this fluctuating, pulsing field of snow over the while wall. Dim lighting makes it thicker of course but a white wall... makes it quite clear.

And I had to wonder... what do other people see when they stare at a while wall? How clearly do they see that wall? Do they see the bumps and grooves of that wall? Surely not. I can't imagine clarity you see. I have no concept of it anymore. It has just been too long. I expect it is like if you gave glasses to someone who has been near-sighted all their life. Bam clarity. I am slightly near-sighted in one eye. It was never enough to need glasses for but if I hold one hand over my perfect eye I can see this slight difference in clarity. But I cannot imagine what it would look like beneath that field of static. That shimmer. I simply do not know how sharp and clear it would be.

I know it would not be Moving though. Because the difference between near-sighted and visual snow is that near-sighted is foggy and visual snow is moving and grainy. So it is grainy vision that is constantly moving. Particles constantly shifting over objects.

Vision though is a range. Some people have exceptional vision. Others not quite so exceptional but still do not need glasses. So clarity is a range. So when people look at a wall it may not be a shimmering, warping field of static... but the clarity of which they see the details of it must range. Anyway it is difficult to really focus on things through a field of shimmering static. You can look, but you cannot really stare or focus, you eyes cannot grab onto it for long with all that movement going on. Like if you try to look at the details within that first image there... tricky, isn't it?

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. Perhaps they do not know, never assume a neuro knows all. They rather don't.

Right now I take ginkgo for the tinnitus as if I take it every single day it dampens the loudness of it, except when it is enhanced by a wicked migraine. But overall it is dampened quite well by taking the supplement regularly. It must be taken regularly however. And it is true a good wicked migraine that muffles my hearing still will temporarily increase the ringing pitch.

#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 one or the chains get tangled... guess how I figured that out. So it will be one or the other. I would tell you what I got him but it has not arrived yet and I would not want to ruin the surprise. Nothing fancy. Just something I came across online I could do.

Anyway we do not tend to do much on this particular day. Not much for the hype I am afraid. I do like getting a card though. A nice good funny card. My spouse prefers a sentimental card. I actually think the cards would be sufficient but this year we decided we felt like gifts. Sometimes we decide we feel like dinner, but not on the actual day, just near to it.

But on this day I like to remind myself I got myself a keeper. A man who when I worked did all the cooking and did all the shopping. Now that I am off, he continues to do all the shopping but I decided since I was home to do all the cooking. And no matter what he does he does it because he knows I am in pain and because he wants to. A man that when I went on long term leave was pretty insistent I never return to my employer and preferred I did not work at all. Don't know if that is feasible but it is really sweet. I don't know why some relationships break under the strain of chronic illness as a factor and others do not. But I know my man has some good empathy and I think that helps him understand others better. I lucky to have found him and to have been a part of his life these 16 years.

Here is to my man!

Charlie and my spouse caught sticking tongue out!

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.

"A draft World Health Organization (WHO) document specifying the new international classification of diseases (ICD), has labeled fibromyalgia and ME/CFS “mental and behavioral disorders.” While these conditions are not specified in the document, bodily distress disorder (BDO) is; and since 2010, fibromyalgia, chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME), multiple chemical sensitivity (MCS), irritable bowel syndrome, and several other disorders that have some common symptoms, have all been classified as BDO.

While many medical doctors with decades of experience treating patients with these disorders insist they are physical illnesses, there is a contemporary psychiatric school of thought that is equally insistent they are mental disorders. Generally, medical practitioners and physicians regard ME and CFS as the same disease, and distinguish between the others, depending on specific symptoms. Psychiatry calls these disorders “somatoform,” and in terms of the BDO definition, sees them as “physical complaints not attributable to verifiable, conventionally defined diseases.”  ...

Fink, the psychiatrist who heads The Research Clinic for Functional Disorders and Psychosomatics in Aarhus, Denmark, and his co-author Andreas Schröder, maintain they changed the classification because the current approach to “functional somatic symptoms” is fragmented, and therefore “an obstacle for research and a hindrance for effective patient care.”...

It has been announced that Dr. Fink will discuss functional disorders, which he describes in his One single diagnosis paper as representing “body distress” instead of “well-recognized illness.”  Danish physician, Dr. Henrik Isager, who is the author of the recently published Blind Spots: The Failure of Contemporary Medicine to Recognize An Epidemic of Energy Loss and Underlying Environmental Disrupt, will talk about ME. In his book he discusses an “indifferent response” by medics to diseases like MCS, fibromyalgia and ME/CFS, and expresses his opposition to doctors labeling these illnesses “psychosomatic or even fictitious.” His argument is that the medical industry shows a hostile attitude to researching these illnesses because it will require a “paradigm shift in clinical medicine.” Kjeld Parsberg, Hansen’s lawyer, will talk about legal consequences of functional disorder being used as a psychiatric diagnosis.
At this point in time, fibromyalgia and ME/CFS are not officially labeled mental and behavioral disorders by WHO. In the current classification, ME/CFS falls under the category “Diseases of the nervous system,” and sub-categories “Other disorders of the nervous system” and “Postviral fatigue syndrome”, and is listed as “benign myalgic encephalomyelitis” even though the word benign is no longer used. The history is that CFS was originally thought to be a viral illness. While there have been subsequent studies that have linked viruses to the disease, scientists still have no proof of what causes ME/CFS. Fibromyalgia, which is also a mystery disease, is currently classified under “Diseases of the musculoskeletal system and connective tissue” and sub-categories, “Soft tissue disorders” and “Other soft tissue disorders”, along with fibrositis and myofibrositis.

WHO’s new draft of its International Statistical Classification of Diseases and Related Health Problems is titled Joint Linearization for Mortality and Morbidity Statistics. Neither of the terms “myalgic encephalomyelitis” or “chronic fatigue syndrome” or the acronyms, “ME” and “CDF” appear in the document. Fibromyalgia is still listed under “soft tissue disorders”, and is described as “a rheumatic disease.” It states that symptoms include chronic diffuse pain, sleep disturbances and intense fatigue that are often associated with depression, anxiety and depression, and may be triggered by either psychological or physical trauma.

In the section on “Bodily distress disorder” under “Mental and behavioral disorders,” the definition includes reference to the most common symptoms, stating that the “single very bothersome symptom” is usually fatigue or pain. There are beta draft caveats to the document, that state it is updated daily and has not yet been approved by WHO. It also states that the coding – which in this case would show fibromyalgia and ME/CFS labeled as psychiatric illnesses – should not be used except in agreed field trials. The new classifications are due to come into effect in 2017."

I am not sure who might have come across this and read it, but it seems to have been removed. WHO has clarified the issue on Twitter:

@secretspartacus Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11

@secretspartacus #ICD11 beta draft is a web platform for collaborative editing. It’s not final & not approved by WHO 

@secretspartacus Researchers, health-care providers are invited to comment, make proposals to #ICD11 beta draft

I think while the initial article had some inaccuracies it is important to note what changes are going on with WHO. We all know the stigma with FM and how still a lot of researchers continue to focus on it being psychological, which does make one wonder what the burden of evidence a disease or condition needs before it is firmly established it its existence and research directed in the proper direction.

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 Phase II study to centers in Australia shows the increasing excitement and support throughout the international community in addressing one of the most urgent global needs in drug development: a safe and effective therapy for chronic migraine.
"This progress will place us on track to complete enrollment of the trial in the second half of 2014," Yeomans said.
The company is mainly focused on the discovery and development of non-narcotic, nasally delivered, analgesic drug products." Clinical trials PBR

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...