My bad mood is intensify with the pain

Bad mood turning into frustration and a bit of the 'why me' blues and some 'When will the pain fricken end today. I am in so much pain now, from fighting all day with semi-successful pain killer and then moving onto not at all successful ones. I am not sure I am going to be able to sleep.

I have tried two T3 to get me to work half way, then for the other half I turned to four Tylenol and three advil at migraine strength. And now I wish I could bash my head against the wall, it is so friggin intense. My eye sockets feel like they have been gouged out, the ligh sensitivity was bad but now diminished, my hearing cut out then came back with a piercing ringing in them. My chest hurts with piercing pain, which is not angina, but might be from the smoking patch...as it did not like me and vice versa. The back of my neck is killing me, with spiking pain upward when I move. Or spiking pain from the left to the right when I move. Trying not to move my head. When I lay down it hurts even more. I can't try the new med yet as it would conflict with the advil and my stomach already hurts. So tomorrow  after what can only be a crappy sleep, I am going to try nothing... unless it is a wake in the morning bitch of one, otherwise I will hold off as much as I can. To clear the othe meds out, make sure I am not rebounding... which is possible I rebound on T3s, cause you have to take more to get the job done. When it hits that severe point, or if it does, I will try the anti-inflammatory and see if it works. If not, after how painful it got tonight, might have to go to the ER.... actually maybe I should and just ask for a prescription of Maxalt, I mean no Imitrex, just Maxalt, it might not have that effect and I get my abortive.

I am getting upset over the lack of control. Too much pain, too little to do about it. Means it will be a very tough week and I am so damn tired of trying to endure these things. And I am angry, I don't care what they give me, as long as it works. I do remember a visit to the ER where I took an ergotomine, which made me severely nauseous, but it worked... so next time I should just as for that. Get a doctor note, go into work late, and say this is all I could do in order to come to work at all. Or use the Imitrex again and hope it is not as bad this time.

My shaky mood is not helping either. At a certain level of pain, my moods are all over the place, and not in any of the good places.

Migraine connect: For those that do not get it letter

We all get people who do not get it. And when you are struggling with treatment, work and the pain, the last thing you need is people not getting it. Sometimes it is the boss, I have a great one, but she is getting as fustrated as I am that we cannot resolve this treatment satisfactory fast enough. Sometimes it is a co-worker thinking you are using 'headaches' as an excluse... I thin k my co-workers are great, but they also are stress by now knowing when I will be at work and working for me. And sometimes it is actually the spouse who does not get it, which I also do not have thankfully, because I believe that would be the worst. Also doctors can not get it, they can be mis-informed and they can think you need a shrink or lower your stress. So this letter is for them all, give them the facts.

These are the key points in the letter, followed by the web link to it (that site is awesome for support and information.)

"Based on the most recent U.S. census statistics, Migraine Disease affects nearly 36 million people in the United States alone.
Migraines are NOT headaches. Migraine is a genetic neurological disease, similar in some ways to Epilepsy. The head pain of a Migraine attack is only one symptom of an episode of Migraine Disease, just as a seizure is only one symptom of an episode of Epilepsy.

Migraine Disease is NOT a psychological disorder. The Disease and all it's symptoms are neurological in origin and very, very real. Migraineurs are not neurotic, lazy, "high-strung," overly emotional, or faking. They are in very real pain and physical distress.

Not all doctors have the experience and knowledge to properly treat Migraine. Finding a doctor to properly treat Migraine is one of the most important, and sometimes most difficult, steps in treatment.

There is NO CURE for Migraine. Most Migraineurs, with the help of a qualified doctor, can find preventive regimens that will prevent many, but not all, Migraine attacks.

Migraine abortive medications such as Imitrex, Zomig, Maxalt, Amerge, Axert, DHE, and Migranal, do not work for all Migraineurs. It is sometimes very difficult to find medications that will relieve the pain and other symptoms of a Migraine attack.

Migraine attacks can be dangerous. If the pain of an attack lasts more than 72 hours with less than four pain-free hours while awake, it is termed Status Migrainousus, and puts the sufferer at increased risk for stroke. A Migraineur in Status Migrainousus needs immediate medical attention.

A Migraine attack can, in rare cases, actually be fatal. An otherwise healthy 21-year-old member of our community died of a Migrainous Stroke in November, 2001.

Migraine Disease can be disabling for some Migraineurs to the extent that they qualify for disability income or qualify for the Americans with Disability Act provisions. There are many whose Disease is so severe that doctors are unable to control the attacks, and the Migraineur is unable to work or participate in "normal" daily activities. When a Migraine attack strikes, most Migraineurs desperately need a dark, quiet place to lie down.

Migraine attacks can be triggered by many things:
Perfumes and fragrances from other sources are a very common Migraine trigger. If you live or work with a Migraineur, please refrain from wearing fragrances around them.
Bright and/or flickering lights, especially fluorescent lighting -- some Migraineurs need to wear sunglasses, even inside.
Many foods can be triggers, especially foods prepared with MSG.
Loud noises and crowded places can also be triggers.
Changes in weather are triggers for many Migraineurs.
Cigarette smoke, exhaust fumes
Each Migraineur's triggers vary. There are many other potential triggers. This list is just a beginning.

Stress is NOT a Migraine trigger. It is what is called an exacerbating factor that makes Migraineurs more susceptible to their triggers just as stress makes anyone more susceptible to the virus that brings on the common cold.

The Migraineur(s) in your life need your help and understanding. They need you to realize that they cannot help being ill, they are not "having headaches for attention," and they are sometimes unable to care for themselves. If they need medical attention, they need someone to take them and be with them. As well as being extremely painful physically, Migraine can be devastating emotionally and to relationships and careers. Since the disease is so misunderstood, Migraineurs often feel alone, isolated, and desolate. They also often feel guilty because they are not able to "be there" for their family and friends as much as they want to be and because they may have to miss days of work. The Migraineur(s) you know need not only your help with getting their medicines and any medical care they may need; they need your moral support every bit as badly. A good, solid support system is as important to Migraineurs as their health care teams. YOU are very important to them. That's why it's important that you understand Migraine."

By Teri Robert

RE: Understanding Migraine Disease and Migraineurs

New York Times migraine article

An interesting essay and rather reminds me of me, except I have tried many more drugs and concoctions. It is a good thing to see though, an article written by someone who actually has chronic migraines. It helps with awareness of this disease and so people can comprehend it can be something that is chronic, difficult to treat, life altering and not just a 'headache'.

Migraine Diet

Earlier this week, I went to see my neurologist, who for months has been trying to get me to increase my dosage of amitriptyline or go on topamax, an anti-seizure drug that also prevents migraines.
“Are you enjoying your suffering?” he asked me.
Eagerly pocketing my topamax script, I asked him if he thought that food elimination could hold out any last hope.
Maybe, he said, smirking down into his notes; you never know. “You could always go up to Baltimore and ask Dr. Buchholz.”
Many people who take daily medications come at some point to hate them. Teenagers with ADHD routinely rebel against their meds. Long-term users of anti-depressants risk relapse because they can no longer stand the way the drugs make them feel.
Some people do manage, through diet and exercise, or by protecting themselves from their worst “triggers,” to free themselves from their drugs. But many can’t do it. Many find they can’t accept living in the compromised condition that drug-free existence requires.
A smart high school girl I know switched a few years ago from a mainstream school, where she was struggling with dyslexia and ADHD, to a school that specializes in teaching kids with severe learning disabilities. Being there has permitted her to function without her ADHD meds. But now she’s bored. She’s dispirited by the lack of academic challenge and she wants out, because she’s afraid that, without academic challenges, she won’t be able to get into a mainstream college.
That’s the tradeoff: taking daily drugs, or living a life that feels not quite worth living.
Halloween is coming, and Emilie and I have a ritual: While trick or treating, we eat exactly one piece of candy after every house. She gives me the Snickers bars. She keeps the Hershey’s Kisses and the M&Ms. We split the caramel creams and the Starbursts and pawn the dark chocolate off on her sister, Julia.
It’s from routines such as this, I am convinced, that the childhood roots of adult happiness are formed.
This year she’s anxious. I’m not eating chocolate. Or peanuts. This week, with her babysitter, she baked me a cake, white with white frosting, sprinkles, multi-colored flowers and candy corn. But, she asked me, what will happen on Halloween?
I told her not to worry; I’d eat my Snickers bars.
In fact, I think that I’ll sanctify Halloween by eating every single forbidden food on the migraine diet, all in the space of a couple of hours.
Somehow, I doubt that I’ll end up in the emergency room.

Women, migraines and brain activity- Aug 15/07

Take a look at this:

Click here... article

Women may get more migraines than men because their brains are quicker to release the trigger that begins the migraine cycle.
Women are three times as likely as men to suffer from migraine headaches, and a new study suggests the reason may be that their brains are faster to activate the cascading waves of activity thought to cause migraine pain as well as other migraine symptoms.
Researchers say migraines were once thought to be caused by constriction and dilation of blood vessels. But advances in brain imaging technology now suggest that migraines may start as a result of brain excitability.
People with migraines show dramatic waves of brain activity that spread across the surface of the brain -- known as cortical spreading depression (CSD). This depression is thought to trigger not only the severe pain associated with migraines but also the visual symptoms, dizziness, and difficulty concentrating often associated with migraines.

In a study published in the Annals of Neurology, researchers found that compared with male mice, female mice had a much lower threshold for releasing the CSD trigger.
"The results were very clear," says researcher Andrew Charles, MD, director of the Headache Research and Treatment Program in the UCLA department of neurology, in a news release. "The strength of the stimulus required to trigger CSD in males was up to two or three times higher than that required to trigger the response in females."
Researchers say many factors may reduce the CSD threshold in both sexes, such as genes, hormones, and environmental triggers like stress, diet, and changes in sleep patterns.
"Our results suggest that the female brain has an intrinsic excitability that predisposes them to migraine that may not be simply linked to a specific phase of the menstrual cycle," says Charles.

It suggests that women get migraines more frequently because of the threshold to the trigger, that is for the excitation of neural activity. So women's brains are more exitable... is that some sort of vieled insult? Or is it just that women have more brain activity? :)

Botox- July 8/07

I can say one thing about botox for migraine prevention. It certainly does not work right away. I am not about to give up hope that it will work, but lets just say so far I have been enduring three days of nasty migraines. If you say 10 is the worst migraine I have ever experienced, then I have been on average a 7.5 these last three days... well beyond functioning. So no decrease in intensity so far nor even frequency.

If you are curious how getting a neurotoxin injected into your head muscles, rather than say directly into the brain, would have any effect on migraines there is actually no clear answer. I can understand how certain drugs affect migraines... affect the excitation of neurons firing and then the inflamation of blood vessels. But botox? Don't get it. Maybe for tension headaches. Anyway here is what I found about the how:

"Why does it work?Based on the mechanism of action of Botox, it is unlikely that anyone would have thought to try it for migraines. Its success in treating some patients has caused problems for those who would attempt to explain why it would work in migraine. One possibility is that muscle tension may act as a trigger for migraine in the same way that light and odors do. By reducing muscle tension, Botox would be eliminating an irritant to the nervous system, which would then reduce the chances of a migraine developing. More recently, studies have shown that Botox may affect other nerve cell signallng systems that have to do with the perception of pain. In an animal model of pain, injection of Botox under the skin resulted in decreased response to painful stimuli. Traditionally, scientists have thought that the pain of migraine was due to swelling and inflammation of blood vessels, but perhaps muscle tension is more of a factor than previously appreciated."

So in other words who knows? Based on this explination I can be certain it will not help with my monster migraines, where certainly the pain is not reflected in my scalp.

Anyway, needless to say I am not in a good mood. At least the toradol is sitting well with me right now, cause the last thing I need is pain from that. I have one week before I go back to work and I am fine with that as long as I get some slight indication this botox is doing something... anything. Even if it just does a little, we can add to that with other preventatives.

Botox in the brain- July 6/07

So getting needles in the head is decidedly unpleasant. Who would have thunk it? But I am not afraid of needles or minor fleeting pain. I am no sissy girly. Okay, I did cry a little and there was some begging for mercy, but other than that, super cool.

So looks like I am going to have a numb forehead for six months. Even if you scare the jeejeebee's out of me, I will not look suprised. The neuro warned me explicitly not to rub my head in the next 24 hours, or a might push the botox down and thus have an eye lid drooping for three months... not a sexy look on anyone really. And this makes me a little paranoid about sleeping... given I smoosh my head into the pillow and toss and turn erratically all night long. I just might wake up with drooping eye lids and an ear at my chin.

The neuro said we should see results in two weeks, although I should see some change by the time I go back to work. He said it works on 3 out of 4 people, although not everyone can afford it (400 bucks a treatment and even I am not sure if I will see a refund). Of those that see a result 25% will be migraine free for the three month duration, while others have varying results. So I can anticipate some sort of positive result, although I don't think so much for the hormonal migraines. Depending on the results we might have to change my pain killer, because toradol so does not do much on acue migraines and seriously not so good on the tummy.

The allergic reaction of death did not happen and so that is all good. It would rather suck to find out your allergic to botox at that point, the point of dying from it. Any other some bruising any cardiovascular side effects will likely present within the first week if I have any.

Basilar artery migraines- June 2/07

I am curious as to whether I am getting migraines of this type. It is one of the more rare ones, so not likely. Still makes for an interesting post, there are types of migraines and types of treatment, always a good thing to keep in mind. I was originally diagnosed with transformed migraines, because of the changes in symptoms and varying intensity of attacks, as well as increasing frequency. Which makes a lot of sense when you consider the sleeping disorder I have. However, it does not make much sense when you consider the whole angina chest pain symptom or the loss of consciousness episode. Nor even some of the more profoundly neurological migraines I have had, since generally you are looking for a decrease in symptoms overall, not an increase in some and a randomness to others.

Basilar artery migraines:

"The neurological deficits accompanying BAM usually include partial or total greying or loss of vision, disturbances in oculomotor function (such as double vision), vertigo, tinnitus (ringing in the ears), ataxic gait (difficulty in walking), paralysis on one side of the body, altered consciousness (may include amnesia, confusion, stupor, and/or syncope (loss of consciousness)), ptosis (drooping eyelid, usually on one side of the body). and parasthesias (altered sensation and tingling) on one or both sides of the body.

In making a differential diagnosis for Basilar Artery Migraine, neurologists should look for the presence of two or more of the typical symptoms, which include vertigo, tinnitus, decreased or impaired hearing, ataxic gait, dysarthria, visual symptoms (normally in both eyes), diplopia, bilateral paresthesias or paresis, and impaired consciousness. These symptoms are usually, although not necessarily, followed by a throbbing headache in the occipital region (the back of the head). The vertigo that accompanies Basilar Artery Migraine normally lasts between 5 minutes and one hour."

So I do get,
-partial or total greying or loss of vision (kind of foggy vision which can be bad, and sometimes an aura that knocks out one eye completely.)
-double vision (This is a consistent symptom for me, with every migraine, although at times quite a bit worse than others.)
-vertigo (spinning head, feels like your moving when you are not, or so intense you can't even stand and it feels like you are spinning one way and the room the other)
-tinnitus
-ataxic gait- if they mean walking into walls and door frames like a drunk then yes.
-altered consciousness- yes to intense confusion, and once I did faint.
-parasthesias- most definately, but I think this is a common migraine symptom
-decreased or imparied hearing- yep, mostly muffled hearing, the ringing or sensative hearing, or that cutting in and out of hearing.
-throbbing headache in the occipital region- my migraines do cause a lot of pain in that area, from throbbing to a spiking pain.

Now this type of migraine is a migraine with aura, so it is easily misdiagnosed. And also this type of migraine should not be treated with triptans... because it can cause a strong case of death, or stroke, heart attack or coma. And obviously I have had problems with triptans.

This would be speculation however. Just a little concerned about my treatment if I do have this type. Given botox should not be given to people with heart related issues. *drama alert* I would rather not get the whole death side effect to that. Whereas anti-seisure meds are fine, whether it is this type or not, and thus I would prefer to go on something that may help without causing a stroke or a heart attack. But that is just me; better safe than dead. It is a bit of concern, since the neuro who diagnosed my migraine type did not actually know much about complicated migraines. And given the increase in symptoms since then, some seriously freaky symptoms, I just wonder if he might have missed something. An MRI might have been a good idea.

Really I am just concerned over the angina, which is hardly something to ignore. While I do not get it as much now that I do not take Imitrex, it is still a symptom. Add that to this fainting episiode which was not looked at by my doctor, but she assures me it can happen with migraines, I am just a bit on the wary side. Fainting does not seem like something that regularly 'just happens' with a migraine. Not when you consider such things as possible seizure activity or heart related problems, and to simply brush it off without considering either of these does not sound like a great idea. Again, maybe that is just me.

My doctor is determined to send me for the botox, because well, she has no clue what to do with me. And I am pretty determined to try it, since this neuro has other suggestions to try if it does not work. So it is a moot point really. However, before I get the botox I am going to ask him to make sure it is a good idea in my case. But if I wake up dead a week after it, I will be so pissed.

Types of Migraines - May 25/07- My personal classification

I have an aura so bad right now I have lost the vision in half my left side. It is a warping, flashing, twisting light. I rarely get auras this intense. Although once in awhile I will lose sight in one eye, for about fifteen minutes. When this one started it was just at the lower left of my visual field, and I kept looking that was because I kept thinking I saw something move. Then it expanded and I could see the sparkling edge of it throughout, as well as this flickering and liquid part of it on the left. With an aura like this, it would be a very good time to take an abortive. Pity I do not have one. We will see what kind of dent these painkillers have on this type of migraine.

Let me educate you on my types of migraines. There seem to be certain types that hit me and I have personally made my own classifications.

1)The migraine without aura- Mild, moderate or acute. Can have any of the other symptoms (nausea and light sensativity) or none at all. Tends to grow in strength slowly over an hour. With plenty of time to treat it before it gets acute, or endure it if it does not.

2)The migraine with aura- your warning is the visual fireworks. Negative, poitive, sparklesa, blotches, waves of light. And any other aura symptoms, like tingling, numbness, hearing problems, blurred or double vision, problems speaking, thinking moving...

3)The midnight migraine- A migraine that starts when you are alseep, gives you the most vivid and spectacular dreams and then pulls you awake from the pain. Gotta love waking up like that.

4)The manic migraine- a migraine that instead of making you lethargic with a brain of pudding, it gives you a jittery boost of energy and creativity prior to coming on. Often with trembling hands and twitches, making you look like a recovering crack addict.

5) the right side surprize migraine- 90 percent of my migraines are left sided or both sides. Once in awhile I get one on the right side and it feels quite a bit different than the others. If it hits on the right side, it will not hit both sides. It is more piercing than throbbing. Often it does not last as long.

6) The dang it is bright out migraine- a migraine induced very quickly from the exposure of light. Comes with a heavy dose of eye pain, double or blurred vision.

7)the monster migraine- this migraine will start quickly, with a piercing electric pain in a very specific spot. It will get rapidly worse with movement, until you cannot move. Most often it lasts exactly 8 hours, but no abortive has ever managed to get rid of it faster. It can also last days, where it becomes a status migraine (a migraine that lasts three days with no relief) and this is due to the fact it does not respond to abortives. And so it can cause an ER trip or two. Also may come with piercing chest pains.

8) the silent migraine- I have only had a few of these, maybe three. This is a migraine with all the neurological fun, but no pain. The tingling and numbness can be felt throughout the whole body. The aura can be very intense. You may feel very odd, may even feel like you are having a stroke, but there is no pain. Kinda odd, but hey, no pain.

Short term disability leave- May 25/07

The leave of absence I have been trying to avoid at work, is, well, here. Which is a really good thing considering the whole inability to sleep thing, the midnight migraines and the not so pleasant nausea I have going on. As soon as I can arrange to get the botox injections I will be set and hopefully they are covered on my plan. Just in case you are looking to get botox for other reasons, it costs 400-500 for the botox and my neuro said for cosmetic botox they tend to charge about a 100 bucks to inject it, but since he does it for medical reasons he does not charge. I still need to set up a chiro appointment and... remember to go to it. And I still need to get my hair cut... again remembering the appointment helps. And just because life is like that, I also need to make a dentist appointment asap, since I have some killer pain in one tooth. I speculate it is a cavity, but since I have never had one I can't be sure, just going on that theory due to the pain.

Now I have filled out all the paper work for this leave of ansence. My boss has filled out all her paper work. But my doctor is really slacking, of couse apparently she was off on Monday. So I will be getting the paper work tommorow when I go in for my doctor appointment, which would be three days later than I would have liked. It is possible because of this delay I might be sans a pay cheque, but thanfully there are three paydays in June, so it will not hinder me in any way.

So what have I been doing with my spare time? Well, extremely little. I have not had the energy to do any housework, which would at least make me feel awake and functioning. Leaving the house is a trial I have been avoiding, because you know it is bright out there. Since the sleeping thing has been so very erratic I tend to catch up on it in the afternoon, which is the best way to get rid of a afternoon migraine anyway. However, I find myself wide awake very late into the night, unable to sleep because of a nasty migraine, then when that is gone, nasty nausea, and so I tend to blog or update my website... anything to distract myself really. I will, of course, need to adjust this sleeping pattern, but I figure once we can dampen these migraines then those lovely sleeping pills will be in working order once again. And really when your stomach is upset it is not a good idea to drink five bottles of nice refreshing cold water, because then you will not be sleeping, just peeing. Also, if you have nausea that will just not quite, don't take Toradol, becuase that is worse, way worse. So I have been sticking with the codiene, but trying not to take it too much, lest I get into a rebound cycle.

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...