On-Line Migraine Journal

The on-line migraine journal is intended to be an area for migraine sufferers to post their migraine histories and experiences.

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I think I found a solution (maybe temporary) to my migraine headaches. I had migraine for about 3 decades, but it got really bad for the past 3 years. I would wake up with a headache every morning, and actually have Imitrex with me everywhere I go. Recently, I ended up in the emergency clinic after a stretch of 16 hours of non-stop solid pain and vomitting. There, I was given two shots of pain-killer and a small dose of Benadryl. After a couple of hours, I was well enough to leave. The doctor prescribed 800mg IBprofen, and to see my neurologist. IBprofen had never worked for me before.

Well, my neurologist did the usual, same-same. So, I decided I would, instead, take 2 IBprofen (200mg, over the counter) and a small dose of Benadryl, once or twice a day. Lo and behold, no headache for the first time in a long while, even the sensation of pain seemed so far away, so yesteryear. I also stopped taking Imitrex. It has been a month and a half since, I still get an occasional headache, but it doesn't blow up, and if the first dose doesn't work, I'll take a second, and I am completely fine.

I'm not a doctor. I'm just speaking from my experience, and willing to share my good news. Check with your doctor if it's safe for you to take IBprofen and Benadryl together.

Best of luck.

K <khiamdrury@yahoo.com>
Wednesday, November 14, 2012 at 00:13:48

Hello, i've had migraines since about 11 or 12 years old, i'm 50 now. In the beginning, and for years i would seek out street drugs because my Doctor couldn't give me anything that would work. i found smoking tobacco and marijuana helped immensely but i stopped in 1991. Since then, twenty years now, i've had migraines from once a week to three times a week. i've tried many preventive medicines and gave up caffeine, chocolate, etc, etc. None of them worked for me. Caffiene actually helps. The only cause is barometric pressure, which no one can do anything about. Check out Mediclim website, it's proof. Anyways, i've thought of suicide but i have a good life, with wife and kids, and that's not an option. Just live with it. Luckily Zomig nasal spray takes it away but it's expensive and i don't know what it'll do to me taking so much. Otherwise hang in there, others in this life are suffering more, try to hang on to something good about a painful existance, do good for others maybe. Live for the day and try not to be bitter, it could always be worse.....

Ken <fastgodd@sympatico.ca>
Wednesday, October 31, 2012 at 05:55:42

My name is Emily, and I am a migraine sufferer.

It wouldn’t be quite so bad if it was just the “typical” migraines that my family all seem to get. By this, I mean, the beginning of it all with a strange mix of irritation, stress, pms symptoms, cravings for random foods, a manic type of energy and then a sudden confusion as I begin to lose my sight in my peripheral vision in my left eye, slowly, but surely. . .then (my) usual blinding, flashing, disappeary-aura that lasts the hour. This lovely time, where I love all ability to really focus, to understand speech, to not flip-my-shite over not being able to see (as my right eye is taken over by this lovely ball of nothing that is there obscured by flashing bulbs like the paparazzi is following me). I also become a raving lunatic, where I apologize for having a brain that could be affected and begin to fear that I may die, that my sight will never come back, that my life will always be decided by pain – by aura. The rest of the hellish time, it’s me all irrational, and the worst part is that I know that, even as I experience it and apologize for something I have no control over.

This is followed by a day-two days of pure hellish tormenting pain, numb face, nausea, vomiting, tingling limbs, shooting, ice-pick pain in my right temple, blinding pain, a pure hatred for all noise, for sunlight, for touch. I wish to just curl up and die for not just two, but three days, cos after the pain comes the shame, the self-loathing for such weakness, the general feeling of crap, the depression and the dread of it all coming back again someday soon. . .I think “oh gods, what now? What did I do, eat, etc now?!” I sleep well-enough, I’m a uni student (who has time to sleep?) and I eat remarkably healthy foods, cos I love it. I exercise in that I dash about, and I could spend a bit more time not bent over a computer screen and straining my eyes. . .maybe that’s it? But no, cos. . .I get them even when I’m nowhere near tech.

Then comes the fear of –what if it’s something more?! What if I have a brain tumour, or maybe I had a stroke, or a seizure. . .and sometimes I think I exaggerate the pain until it comes back, all blinding and horrifying and just beyond what I thought I could stand and survive. It’s where my own body is fighting a war, and I am the battlefield, and the collateral damage, and the victor and the loser all at once. I hear about artists who write and paint their pain, I hear my own family say “I just pull over for the aura and work through the pain” and my best-friend telling me it’s a daily-dose of pain now for her. But maybe I’m the one who has something else—maybe it’s just my damn luck—and so the MRI, and the useless calls for food and activity diaries (which, hello, student! I have no time for that shite!) and surprise, surprise!

No such luck love, you have migraines, and that’s about it.

And for a moment you think—dammit!—cos then maybe there was a reason, and you hear stories about how your doctor’s wife used to get migraine’s cos she ate berries that had small traces of mould on them, and she loved them, but they were causing it all.

But how do you control the weather? The stress? The daily things that build up, the food and the wine that never triggered you before, but did this time—you just didn’t know – you can’t get better sleep cos the migraines cause bad sleep! You dread the stress trigger, but you stress over it all, you hate how your own hormones make you roll around like a moron in bed, miss exams, miss dates, miss days you’ll never get back.

And people begin to doubt you—doubt your pain, doubt how much pain you really have—is it all an excuse? And you doubt it too, cos maybe it really wasn’t all that—BAM! Another migraine, (quit lying to yourself, you get them, silly girl).

You feel cheated, and people who never get these migraines go “oh yeah, migraines—I’ve had them sometimes, they aren’t so bad!” or “Well, at least it’s not something life-threatening!”

Cos they Don’t. Get. It.

At all.

Not a bit, if you are one of those people, sod off right now! You never, ever get to say that! You tell that person that you don’t understand that level of suffering, that level of random, self-imposed torture, but you wish to hell they didn’t either and that neither of you ever have to feel it. . .ever.


Moving on.

So, you read up on the possible causes – you get everything from A-Z. . .starting with Age (special migraines for special ages, children ones, rare, post-menopausal ones, rare. . .teenage ones?) Hello Emily, that’s where we begin. . .High-school, in a quite funny story actually. . .

Once upon a time, I think it was grade ten. . .I was in art class with my best-friend of the time (who had the emotional empathy of a teaspoon, for real) and being told that looking at this one particular machine could cause blindness, so that’s why you never turned it on unless it had its canvas over it. My teacher showed us the switch and then continued to talk about silk-screening, which was actually a really fun process. . .moving on, he turns on the switch and it’s like he had control of my brain cos I suddenly lost the vision in my left eye.

Funny, right?

Only it wasn’t at the time, I freaked out. . .I started waving my left hand down by my side, wondering why I couldn’t see out of my peripherals, and thinking “I’m blind! I’m going blind!

How could it have done that when I didn’t even look at it?!” by that point I was already very distressed and out of it. . .I sat down and my friend asked me if I was okay. I told her I couldn’t really see. . .and I was crying, I was so confused, I kept thinking “What is wrong with me?!” and she left me to clean up my stuff, telling me that she’d do so in her “oh xxxxxxxx this is SO awkward” voice. Looking back, I think it was the nicest thing she could think to do. I must have called my father cos he showed up and I cried and told him what was happening, but I don’t really remember in-between. . .like I lost time there.

That happens, things become like a hazy dream.

Goddess, I hate migraines.

My da told me it was normal, that I now had a full-blown migraine, and “congrats” in his way. He gets them often, only more likely to be triggered by smells than by my usual light, weather, hormone, stress mixture.

Perfumes were his enemy, the sun was mine...

Now I remember sitting in class and having the light just right against the blinds and hit me in my brown eyes, and it hurt—like having something split through me, like being pierced by something you need to live. . .something that has turned my hair blonde, freckled and tanned my skin and allowed my species and others to grow. . .

Look what that hateful bastard, the sun, did to my brain!

It was funny, now that it’s been years. . .but maybe it’s just my way to find humour in traumatic experiences, better to laugh than to go mad.

Maybe I did both.

So, I got that. . .and slowly. . .it seemed like that would be it.

But then I got into university, and it become even more normal to be in pain. . .it became so that I would get only so many a year, near times of great stress (that number grew too though). I began to know that a true migraine would only happen with a blinding-effect aura of vision loss in my left peripherals.

The best part came with having to go into my school clinic (on the day of, or else “it doesn’t count”) for a note when all I wanted to do was cry silently into my sister’s or parent’s bed. I get this odd feeling of being alone in my room—it’s hateful, I need someone around to tell me it’ll go away—I feel so helpless. . .pathetic. They love me, but I hate how they see me cry out for help, for mercy. . .it’s just hell, it’s so much worse than physical pain, it’s. . .it’s just so much more.

I once (in my one of my best/worst migraine to date) had two exams in one day (yes, Uni is hell all on its own). I was all ready for them (no really, I take school very seriously and had studied my butt off!) and it was early yet, seven in the morning maybe. . .and suddenly, my vision was going. . .and I thought “I’ll chug a coke and hope to the gods it helps!” and. . .it didn’t (obvious).

I walked to the bus stop down the road, blind—and slowly getting worse—and I can’t quite remember getting there. . .to school I mean. But I do know I was crying, and trying not to freak out more, but people noticed. One girl out of a bus full of people asked if I was okay, and it hurt to have some stranger care so much like that, it was too bloody much and I thanked her. But, it was just startling to be outside when I knew that this warning was a time to find a safe place to be okay for when the pain came (and the public bus with a group of loud, panicking, stress-ridden students was SO not that).

Picture this (or maybe remember this?): you are sitting on a bus, in one of those odd side seats that have you facing out towards the isle, rather than sitting parallel to it, and you can only see properly out of one eye—everything is too bright, you aren’t really properly aware and you are so stressed about these exams that you’re almost hyperventilating. One moment you see nothing and then suddenly a person is in front of you, but only one side of you registers it, it’s shocking.

Like there is a partition up in your mind, and you’re like “hey, where the heck did that guy come from?! Oh yeah, right. . .going blind, you git.” It’s awful how silly I felt. I bet people thought I was on drugs, or crazed. . .or something akin to that. I walked to school and past the hoards of people waiting to write from my class and pain-filled-embarrassed-smiled at them, or something. Mostly I just walked quickly until I got to my Prof and she looked at me like I was insane for being there. . .and I couldn’t make things make sense, and I kept telling her sorry, cos my migraines make me make no sense. . .and she just said “it’s fine, go to the clinic now though.” Cos she is amazing, and my other Prof made no fuss either (luckily, thankfully).

The clinic is its own little ball of joy—sickly people, condom-seeking, std-testing, filled with the anxious, the depressed, (the hungover?), and the physical rehab-sharing, clinic. . .and oh goody, it’s so early almost no one is in. . .maybe? I don’t quite remember a lot of it. . .but my aura was starting to not be so awful, I’m not sure how I made it around campus. Maybe they thought I looked disgusting, pale, sweaty, panicky, not really aware. . .haha, I bet I was quite a sight.

It was. . .it is disturbing to reflect on it now actually. I think it could relate to my times of drunk stumbling on the street, but not fun.

And less memory of it remains.

I just wanted to get home before the pain began, and my hour of aura (unbliss) was almost done (my bus ride was 30 minutes, plus the 10 or so to get to my Professor, and to the clinic, well, in my state, maybe it was longer?). My doctor gave me something (which I will take later, and throw up) – wait, is this my last migraine? I can’t even remember now. . .I try to delete the situations, but it’s just like a nightmare I know
I’ve lived over and over. . .it kind of blends together.

I don’t know how I got home, I know the pills didn’t work and I remember being mad that my doctor didn’t believe me when I said it was a migraine. . .dammit, I got these, I know them! To be doubted like that. . .it was embarrassing!

I threw up a lot during my last migraine attack, my stomach shut down, emptied itself and I just kept gagging. . .my mum helped me, and I felt so bad.

I cry a lot when I get sick, I apologize like it’s my fault. . .I am worse during migraines.

If it was just these, then maybe I could go “oh, I’m lucky I don’t have cancer. . .that I’m not stuck in a loveless family, that I don’t have to avoid certain foods for fear of certain death,” which may sound bad, yeah. . .bit not good, but still. . .true. Migraines are not the end all bad times, they are horrific. . .but what is worse are the daily things now.

Vertigo, where whole days are spent like I just rode my favourite rollercoaster 808 times and then decided to lay down, only without the cost and fuss of riding the damn rollercoaster. Ringing in my ears, this high-pitched whine that tells me “hey, this tone is about to die in your ear cannel, say goodbye.” The strange and random nausea that happens just cos (I’m lucky that way). My sudden eye pressure, the severe abhorrence I feel towards light. The way my words stop working, sometimes I feel so tired, I just yawn and yawn, and sleep does nothing. My face, hands and feet go numb, I feel like a zombie.

I get depressed, I get euphoric, I get so angry and irritable over nothing. I get anxiety over migraines, and I check my peripherals and just feel generally unwell. Then comes the sudden stabbing pain of little migraines, like little drops of rain before the storm—startling, sign-giving, a warning of the storm to come—and then they go away, leaving me with the post-migraine hell and no one quite getting it. The random migraine auras I get – the floaters, the buzzing zig-zags that float about in the middle of my vision, and off to the right. . .the way some sounds just suddenly grate, or my skin is too sensitive. . .I itch, I feel hateful.

I just wish it was over.

It is my daily life now, and sometimes I just feel so drained. . .so tired.

People do not understand the silent migraine; they say, “Oh without pain, you say? That doesn’t sound so awful.” Until I tell them what it means, and they think “yeah, right” as if I make it up for fun.

Like I enjoy feeling like an alien in my own skin, as if my own body wants me evicted and is giving me the coldest shoulder.

Yes, I do this for fun in my spare time.

But eventually it becomes the usual, the norm—they forget about it cos it’s not them who experiences it. . .and how can you explain it? I sometimes feel like I could sleep forever, my life becomes hazy and my everything becomes far away, and moving, talking, living is too much.

What else could cause it?

Food – coffee, wine, cheese, berries, sugar, beans. . .or maybe something that’s all yours.
Weather – air pressure, etc. . .I feel it like storms, and I love storms. . .but not these.
Stress, sleep, exertion (sex and exercise), hormones (in my meat? Lol, birth control, pms, etc) what else. . .
What else triggers it? It’s all up to the person, the doctors have no clue. . .I read somewhere that it’s just like what is killing the bees. . .it’s the wireless, the wi-fi, the thing that lets me write and post this. . .can you imagine trying to avoid that?

It’s bloody impossible to avoid it, everyone has it. . .we all need to be “connected” to the technology, to the impersonal web, to that which pulls us further from humanity.

We forget that we are all already connected and look what our tech is doing? What’s more, is that really it? Maybe. . .but I’ll never know how it is to be away from it cos I’ll always be around it. You know, unless Dark Angel happens and the Pulse wipes out the internets as well know it.

Not gonna happen, likely, probably, hopefully (I like tech too, don’t get me wrong!)

Is it the blood flow restrictions, the neurons firing and depressing in odd ways, is it a signal of something worse, is it. . .is it divine punishment? Cos I have asked the deities of all the universe to stop this, please, please just stop!

It doesn’t work.

Neither does crying, or screaming (ouch, my ears) or the meds.

And the one underlying cause I can find amongst my friends, peers, etc (and I know MANY of them who suffer from all kinds of migraines, ranging from mine to other kinds, symptoms, treatments and triggers. . .and it’s a highlight to hear people who say “I know, I get those—I get it!” and know it’s true, the silent migraine sufferers are especially miraculous cos they know what it is like!) is life.

Life causes migraines, and keeps us from living and from people understanding.

I just want to live migraine free, to live awake, to be okay, to not be so scared and in pain.

My name is Emily, and I am a migraine survivor.

Thank you for listening.

Sunday, October 21, 2012 at 20:24:05

Hi all, I am new to this. Not new to migraines. I have had them since age 8. I am now 62. They never got better after menopause either! I have been on every med known for them. Imitrex is my savior. Nothing has really worked other than that. I did try Botox 2x. 1st time worked great. 2nd time not at all ??? But to get back about the imitrex. As another poster mentioned it has been said by many MDs to only take it 2 x per wk. well like the other person who has been taking it up to daily for years & is fine , I too have taken it 4 x wk for many yrs & I too am fine! But my internist recently had a fit about that & said you are getting rebound from it! So I went home & thought well ok I will try not to use it that much. Well as soon as I got another migraine that week I tried not to take anything. 6 hrs into it I was in the most horrid pain. Forgot I guess how bad they get without my imitrex! So I thought no way!!!! Got up & took my imitrex. My thought is this..... If they want me to only take 2 per wk then give me something else that works & doesn't cause rebound. My whole life I have headaches that came this frequent rebound or not! Sometimes you have to weigh your quality of life.! Going to discuss this with my neurologist next.

Jane <Indyjanie@gmail.com>
Thursday, September 13, 2012 at 21:24:03

Any suggestion to a new headache-migrainer would be appreciated!
I just turned 40 and have had chronic daily headaches which lead to migraines daily for about 1-2 years. Never had problems before so why now?

My primary dr gave me pain pills but that's not a solution. Went to a neurologist who gave me an mri and eeg test but it's all clear. She put me on Topomax but it didnt do much so I stopped.

Had nasal surgery thinking that might cause headaches but no relief. I go to a chiropractor occasionally and see a massage therapist once a week. It seemed to really help for awhilel but now they are back with a vengeance.

I have been trying to keep a food diary and headache journal but can't seem to narrow down any triggers!
So a new neurologist told me to get off caffiene and stop taking the ESGIC + tablets my primary dr gave me. It's been 3 weeks with a migraine everyday.

I take Maxalt and Imitrex when I can but as everyone probably knows you can only get 6 of one and 9 of the other a month. Why?

I just tried accupunture yesterday for the first time and it seemed great but now another headache. She suggested it might take several treatments before I see if I can feel a difference.

Is there any end in sight? Could my being about 250 and 5'11" be a problem? My cholesterol is good but low good chl. I found out today no diabetes but high trygylerides of 225.
I keep thinking there has to be a reason for these migraines. They are taking away any form of life I know of and I cant see a future with daily headaches.

Any help or input would be greatly appreciated. Any suggestions for tests I might try would be a Godsend. Dr's today dont seem to suggest anything unless I bring it up.

Thanks again,

Dale M <airmale29@swbell.net>
Thursday, September 6, 2012 at 19:00:08

I just found this great site. I've had migraine for about 10 years. Chronic the last 5 years. I've been on many different preventatives, the maxalt, phenergren for vomiting, & seen neurologist, pain specialist, psychiatrist, No help. I just want the pain to go away. I've been married 33 yrs. & now my husband gets almost irritated when I get either migraine, Fibromyalgia, or IBS. Can't really blame him I guess. But I got in trouble this morning because he caught the mailman delivering Tramadol to the door& it cost $134.00. I live in north Carolina & none of the doctors will prescribe anything strong enough to calm down my migraines. I can't take it anymore! I've read your posts & a lot of you have far stronger medicine than I can even hope for! Oh, I had bronchitis last year & was given tussinex for cough. That actually helped after a few doses. At least I slept. Do I need to move?

Becky <Luxorgirl@aol.com>
Saturday, September 1, 2012 at 12:53:56

I am a 48 year old woman who has suffered from migraines my whole life. The past few years became unbearable...nonstop headaches for weeks on end. I have tried every medicine,chiropractor,acupuncturist,yoga,vitamin supplements,change of diet....nothing worked consistently to stop these migraines. I saw a news report about a Dr. in my area (Boston Mass) who performs migraine surgery. I met with him and decided to have the surgery. My insurance did not pay...it cost me about $10,0000...it was worth it. I had my surgery on July 18th and have not had a migraine headache since the surgery. This has truly been a life saver for me. I love waking up and going to bed without a migraine headache. I'm living my daily life without a headache. This is completely new to me and I feel reborn. I have read these headache blogs for years searching for answers and nothing brought relief from these horrible headaches. I finally feel like I found the relief I've been searching for my whole life.

Stacey <galaxypaint@comcast.net>
Thursday, August 23, 2012 at 11:21:28

Hello...This is Doreen...I have been trying to get to the page where I can write a message to other chat sufferers. I am going to go ahead and write about my chronic migraine condition...Thank You...I have had migraines off and on for years....unfortunately, within the past 8 months, the migraines have been fast and furious. They occur every single day! The neurologist that I see has not been able to treat my migraines. Her recommendation has come to Botox treatment. I saw another neurologist who agreed with the Botox treatment. I am feeling anxious not only about the treatment, but also any success of any chat room sufferers.
The neurologists have differing opinions on the process...31 shots of Botox vs. 21 shots of Botox + the treatment will take only a few Seconds to an Hour.
I really need HELP, as the constant pain is almost unbearable. The only thing that I have done to try to relieve some of the pain has been to take Fioricet 6 times a day, 4 hours in between. I know there are differing opinions on this method too. It is my psychiatrist who prescribes this med. He knows my brain chemistry like no other...I have been seeing him for 12 years....Anyway, if anyone is able to HELP me, I will be so extremely grateful. Sincerely, Doreen

Doreen Swaim <doreensheavenlycupcakes@gmail.com>
Wednesday, August 22, 2012 at 13:03:29

Hello....I have been having trouble getting my message to the chat room. I hope that this will get me on.

Doreen Swaim <doreensheavenlycupcakes@gmail.com>
Wednesday, August 22, 2012 at 12:45:44

Hello...I am so grateful to have finally been able to find a support group that I believe will help me immensely. I am a 54-year old woman who has suffered from migraines off and on, but for the last 8 months, I have had a severe case of chronic migraines daily. Not 14 or 15 a month, but everyday! I am looking for help and information for treatment and to share with others who suffer this awful medical condition. At the present, I have 2 neurologists' opinions that Botox is the best treatment offer for me, as nothing has helped except a visit to one of the neurologists office for a shot that requires a driver. She only allows 3 shots per month which leaves the whole rest of the month with such pain that I have to miss appointments, functions, and other activities that are very important to me. So, I ask with great fervor for help...Thank You, Doreen

Doreen Swaim <doreensheavenlycupcakes@gmail.com>
Tuesday, August 21, 2012 at 11:24:00

I am 63 and have had my migraines since I was a teenager. I am a serious allergic-to-everything sufferer. I suffer from migraines from Jan thru May. I start with the cedar allergy, then oaks, and then the molds. Some years they start with the ragweed in Nov and Dec. They build up month by month until they become a morning ritual in late April and May This year I went to a neurologist
and she said I was a candidate for Botox. By the time I got approval came, the migraines picked up and left after I took some oil and a jointed and consecrated myself to the Lord last week of May. I've had about 3 headaches since them and I'm still wearing my mask in the mornings because of the relentless molds. I get bronchial inflammation but can't take any steroid sprays. My migraine triggers are a windy day, smells, light, caffeine and environments allergies. I have not had any Botox treatments but I did read all the scary side effects, I told the doctor I want to start at half-dose because I react to everything. She complied but said they may not be very effective. I guess if they pick up again, that's what I'll do. I've tried amytripthaline, but it enlarged my liver and did nothing for the migraines. Tried other products, including anti-depressants, but they make my jaws yawn so big they lock on me. My migraines start on my right temple or between my eyes or top of my nose. I take to my dark room with an ice pack. Clonozapem is wonderful, and I take .25 mg if I feel one coming. If I don't catch it, I take .50. If I have a really bad pain day, I will take .1; however, my new dr or any of my doctors will not re-prescribe it. Yet, they give me xanax which I don't sleep off. Makes no sense they won't give u something that works. A 30- day prescription of Clonozapem can last me 2 1/2 months.

I also have fibromyalgia and recently diagnosed with possible lupus.

Glad to finally find a post to read and share!

Herbgeek <Herbalblessings@austin.rr.com>
Friday, July 27, 2012 at 05:32:50

I have classic right sided migraines with aura. Migraines started at 9 years old occuring in childhood about 4 times per year. Frequency kept increasing until for the last 32 years I have migraines 2-3 times daily, every day. I am a 53 year old female. On my maternal side the migraines go back at least 7 generations. I use Cafergot suppositories (under the tongue did not work, neither did Imitrex, Maxalt, Verapomil, anti-depressants, biofeedback, etc). My mother who had migraines found some relief, as do I, using a hot steamed washcloth layed over eyes and sinuses, several, several times. I also use with ice in the back of the neck. I fell on my head at three, so I have a constant neck spasm trigger. I am awaiting approval for Botox injections in back of neck and in temples, forehead, and other trigger spots, as it is now covered in California by Medi-Cal. I developed a parathyroid tumor which was diagnosed 4 years ago which caused the migraines to be non-stop night and day and I could see my heart beat in my eyes 24/7. Prior to being diagnosed with tumor the disability lawyers I saw, and Sacramento disability office, didn't think having daily migraines was a disability! So I ended up selling all my possessions to cover the $350 cost of Cafergot per month. The irony? I was working for Healthnet at Rancho Cordova, California and Blue Shield in Redding, California as a temp worker and still I HAD NO INSURANCE COVERAGE! Prior to diagnosis and removal of the parathyroid tumor fluorescent lights would trigger my migraines, and I would have to lie down in a dark room and wait a couple of hours before I drove home. I was training employees for Healthnet and people thought I was a supervisor. Today there is a lot of controversy about the Supreme Court upholding the health insurance bill. I for one, think it's a step in the right direction with insurance companies. To deny health care because of pre-existing conditions, and really, just the total greed of the insurance companies, is criminal. As employees we used to get letters from the president of Blue Shield about what a shame so many Americans didn't have health insurance, and I, as a temp, working for this clueless greedy man, didn't have insurance either! But he was too busy saving dollars and making a profit to really care, what a hypocrite! I became too ill to work, still undiagnosed with the tumor. Why was I undiagnosed? Because I didn't have enough money to go to the emergency room where I would have been properly diagnosed. I was being seen by a nurse practitioner who did not have the proper training to read lab results. Finally, a doctor saw me when he happened not to be there, and she took one look at my last blood tests and saw I had elevated calcium levels. So I also learned that as much I as I adored several nurse practitioners who assisted pediatricians when my children were little, I learned for myself with chronic migraines that I must have a doctor. I suggest the same for all of you who are currently only seeing a nurse practitioner or physician assistant - have a doctor see you, have a doctor as your primary caregiver. By the time I was diagnosed I had had a 2 year bladder infection (caused by kidney stones - resultant by the tumor and also undiagnosed by the nurse practitioner), was osteoporotic, had a severe D vitamin insufficiency, and a whole host of other rare hyperparathyroid symptoms due to not being diagnosed. After tumor removal headaches have decreased in severity and no longer triggered by fluorescent lights, but still occur daily 2 to 3 times per day. Weather changes are huge triggers, as is the constant neck spasm. I am praying Botox works to decrease frequency and duration. Good luck to you all!

Bonnie Troop <bonnieintuition@yahoo.com>
Thursday, June 28, 2012 at 20:12:30

Hi friends.

I am a serious migraine sufferer in NYC. I see a pain management team and have done all the migraine/headache clinics... Here's some good news. My pain doc put me on Exalgo - it's long acting dilaudid and regular dilaudid for breakthrough. When I get a bad headache that doesn't respond, I go to his office for shots of dilaudid and toradol. It's cut the ER vista down from once a month to like once a year. AND - my productivity is way up.

I take protriptaline in the morning and Zonergan at night for prevention.

There you go friends... one more idea....

However, today, I'm going in for the shots. The Exalgo is very expensive without insurance (more than $300) and you are opiate dependent... constipation, etc... BUT - I'm getting better I think... I hope....

Best of luck friends,

Monday, June 25, 2012 at 11:09:11

Hello to all, I just found this online journal only after making a post in the forums. I guess I should have put what I said there here. In hope everyone will understand that I did not know where to post and have been feeling the desperation and inability to function from the migraines for almost 5 months now. I have a history of these migraines for at least 8 years, my memory is not good enough to remember if I had them before that. Anyway, I will say more later about my entire history, it is simply good to know that others suffer the way I do and that someone actually really understands what I am going thru.


Diana aka Faith

Faith aka Diana (faithtofreedom) <faithtofreedom@live.com>
Sunday, June 3, 2012 at 11:17:04

I have suffered migraines all my life, and am having severe ones 4 or 5 times a month, but have a headache of some kind almost everyday. I know some of my triggers....the worst one is aspartame, or any artificial sweetener, pork, alcohol, grapes, aged cheese, and any really strong smells. Barometric pressure changes will do it too. I take relpax for the migraines but am worried because I'm having to take it more and more often. My dr JUST put me on magnesium supplements and vitamin e to try to ward them off. I'm also trying topamax for the first time but have heard some scary things about it, so I'm doing it cautiously! The thing that strangely works the best is an ICE BAG!!! I use it so much my husband refers to it as " my little friend"!!!!
I think the worst part of this is that unless you suffer from migraines, you don't know how painful and debilitating it is!!!! Sometimes I wonder if it will ever stop, and I'm ashamed to admit that when I'm in the middle of one, and nothing is working, I think dying would be better....I have approx 5 good days a month...the rest are spent in bed or on the couch with an ice bag and relax.
Thanx for listening!!! I hope maybe by listing my triggers, it will help someone else who may have not thought mine could be one of theirs!!
God bless all of u with this horrible disease!!!! It sure hurts to live this way!!

Rebecca Zak <rzak1963@yahoo.com>
Friday, May 11, 2012 at 01:21:50

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