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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Please note: Posts are not automatically added to this journal. If you desire a prompt posting/response time, please use this site's discussion forum. Also, please try to use the discussion forum for question/response types of entries. The journal is intended to be a place to accumulate experiences and information, which can be used as a reference to those who wish to learn more about what it is like to be a migraine sufferer. Thanks!





I am a retired M.D. with transformed or chronic daily headache ---- the real thing, scintillations and all. I have noticed some migraineurs had contact allergy to metals, ones that likely had nickel in the alloy. Some things were stainless wrist watches, spectacles, jewelry. The relation may well be coincidental because both conditions are common. But nickel is ubiquitous, in our food, beverages, atmosphere (catalytic converters?). Should enough readers of this entry respond positively to me, that they suffer from both maladies, then the data could be presented to clinicians who would be in a position to do a more scientific study. Thanks in advance for responses. Fowler White

fowler f. white <fwhite01@optonline.net>
Monday, January 24, 2005 at 19:25:54



Hello everyone...After my 63 year old mother had her worst aura with migraine last night I am today searching for support groups for us both. She has only had several in her life...me...I have them pretty consistantly. I had them 2x a month (before and after my period)for several years, now they come whenever they feel like it! I am in school and am about to graduate...and I worry how I will hold a job? I had been put on Tenormin for many years (which seemed to help) then had our only child (was migraine free for those 9 blissful months) then went on birth control (progesterone) and was migraine free for 6 years! Immediatly after going off the Progesterone they began monthly. I am terrified that this will be detrimental to any job I may find. Do any of you have advice on this issue? Do I tell my new employer after being hired or before? After a month or 2 of work it will be apparent in itself! What is the law in such a case as this? Could I be fired for having a medical condition I cannot control? Enough for now. Please feel free to drop me a note....

Deb Miller <hd2@magnaspeed.net>
Monday, January 24, 2005 at 13:30:19



I've been getting migraines since high school. i am now 27 years old. i have tried many medications. the best one that works is imitrex but i get the side effects so I try frova. that works too but not as effective. I wish there were tests outthere to show what causes the mgiraines. I get them weekly and get all the symptoms. not bad enough to go to the hospital. thankfully i know when they start to take a medicine. i'm glad i kept a journal. and i've leanred that its not a food allergy.

Joyce Heatherington <joylight@comcast.net>
Sunday, January 23, 2005 at 00:32:40



I suggest that anyone that is within driving distance go to the Thomas Jefferson Headache clinic in Philadelphia. I've had migraines since 1983, I went to a neurologist in my town for years - no help. Finally in 1998 he referred me to the clinic in Phila. My headaches are very atypical, they follow no pattern, there are no triggers, and no warnings. It's taken awhile but I'm almost headache free. I've gone from having 4 or 5 a week and some lasting up to 6 weeks to only having 3 in the last 6 months.

They (the clinic) have given me medicine that no else has even heard of. I had Imitrex before it was widely advertised (it doesn't work for me any more) and they also prescribe natural remidies not just drugs. They do studies there & the head doctor is often quoted in articles about migraines.

It has been well worth the 3 hr drive it takes me to get there. What I take now that is working is 400 mg B2, 720 mg of Verapimil, 300 mg of Effexor & at my last appointment he told me to start taking CoQ10, but I haven't yet. Those are my preventatives, when I do get a bad headache, I give myself a shot of DHE, and that almost always works.

If you can't get to Phila., find the nearest Headache clinic and go there, I highly reccomend it.

All my sympathy,
Karen

Karen A.
Thursday, January 20, 2005 at 12:45:28



I have a terrible feeling in which I sense as if my head is floating in the air , when this happens I can�t think , read ,watch T.V , anything....I can�t tolerate light ;my only recourse is to lay down , cover my head with a blanket and hope it passes...I have this condition every day...I was misdiagnosed with meniere disease and had surgery in both ears without any results...I am depress and suicidal , with no way to earn a living...

Pedro Gonzalez <cavelas2@hotmail.com>
Wednesday, January 19, 2005 at 11:54:01



I have suffered with migraines since I was 10. They went away and came back when I had a stroke at 36. I have several a week.
By going to a totally organic diet and avoiding corn syrup(BIG
TRIGGER)and taking topamax daily, I have MUCH better control
over them. Controlling my diet is so important and my neuroligist has been great about working with me to find a balance between natural and the right med's.

Carol
Tuesday, January 18, 2005 at 21:35:24



This entry is terribly lengthy, but I think my experiences can help others.

My migraines started the same year I got my first period, (and so did my endometriosis pain).
Cafergot caused rebound, perhaps because of caffeine?
Triggers: everything on the famous list, and: salt, leftover meat maybe because tyramine has built up in it, all beans including peanuts maybe because they contain dopamine?, SUGAR, smoke (especially cigarette and diesel), perfume and fragrances (phenols?), wheat as a food allergy, anything high in tannins like tea, berries, and some herbs.

After living through twenty five years of endometriosis and classic migraine, and now upon approaching the menopausal years, my tri-yearly classic migraine has transformed into weekly chronic and severe common migraine. The headaches are definitely blood sugar and hormone fluctuation related.

I was VEGETARIAN and VEGAN most of my adult life trying to deal with the endometriosis, and I believe this caused HYPOGLYCEMIA!

I had been on the beta-blocker Inderal, which caused me to go almost blind for a week after a few years of the drug--docs said Inderal has weird side effects like this. Tenormin wasn't effective enough to bother paying for it.

Midrin is high in tylenol and if I go over the first three doses, I get very very nauseated--I think it is the tylenol stressing my liver and not nausea from migraine because the common migraines don't give me nausea if I put up with them without any drugs. Midrin also seems to cause uterine pain, as definitely does Benadryl.

Birth control pills caused severe classic migraine every time the dose changed hormone, like estrogen to progesterone or progesterone to estrogen. After four months of evidence, I quit them. I am afraid of unopposed estrogen because I already have abnormal endometrium.

My increased hormonal fluctuations (because of my age and endo?)seem to be causing an increase in my blood sugar fluctuations and it is more important than ever that I eat every hour or two and completely avoid simple sugars, even fresh fruit.

Daily magnesium supplements seem to be helping, as maybe B2 and B6 are, along with lecithin.

When I first started getting the common migraine, I thought they were sinus headaches because my mom complained of sinus headaches all the time. Well, I suspected migraine instead after reading stuff online, and I tried a sample Imitrex from the clinic (can't afford a scrip). Imitrex won't do anything for a sinus headache. The Imitrex kicked the supposed sinus headache within twenty minutes. Oh, it IS migraine! Then I read on the Diamond site that true sinus headaches must be accompanied by, sorry for being gross, but PUSS. Never had any of that from my headaches. Neither did my mom....

I tried steam saunas, but this can make things worse if you sweat out all your potassium and magnesium and then don't put any back in.

I have always been in good shape. But I was anorexic for awhile in my twenties which I maintained partly to prevent having periods, but I think this is part of the reason now why my reactive hypoglycemia is so bad. DON'T SKIP MEALS. I have found some sites online discussing why fasting is actually bad for people--I always thought it would be great to get rid of the poisons, but the migraines were always so bad by the end of the first day....fasting causes hypoglycemia which causes migraine in migraineurs.

I insist on riding my bike every day, to the store, work, whatever, even if I am crying with a headache. I find if my blood sugar is normal, the bike ride will often curtail a bad migraine. Any exercise used to only make my classic migraine worse, but maybe it was because I wasn't careful about eating all the time.

I also practice yoga daily, even just for a few minutes. I used to be afraid of putting my head lower than my knees because I have low blood pressure, would feel faint, and would be afraid of bringing on a migraine. I decided to push through the fear. Now I no longer feel dizzy even from standing on my head (I use a prop under my shoulders so my neck bears no weight).

I have given up on dox because mine have all been ignorant and defensive.

I quit my full time teaching job when the migraines suddenly took over my life. I had saved up a good bit of money planning to quit because of the endometriosis.

I never had surgery for the endo because I didn't want dox insisting I take hormones, and I know of too many women who got their endo back because the ovaries weren't removed....monthly NSAIDs were sort of getting me through my periods so I could still go to work, although I was just a zombie for a paycheck on those days.

I have tried 500mg of niacin daily, and burned my stomach so bad that I can't even tolerate 100mg of niacin at a time anymore.

I tried feverfew, even grew it myself for awhile, but it lowered my already abysmal sexdrive and didn't seem to be doing that much for the headache. I am going to try it again, this time some standardized stuff. I am also going to try butterbur, since I have come across a few articles about it online lately.

I had read about cannibis helping migraine, and it was fun getting high, (my last ex was a bad influence on me too) but all it did was really aggravate my existing hypoglycemic condition. I blame a year of cannibis along with my past vegetarianism for my current BAD reactive hypoglycemia.

And I am going to cut way back on animal fat in my diet and try to increase my EFAs. I am also going to try aloe vera juice again. It is expensive, but it seems to help regulate blood sugar.

I used to go to a chiropractor when I had health insurance, but since when did they get so expensive all of a sudden? They used to be like 25.00 a session and now all of a sudden they are 75.00. I've started trying a Swedish massage therapist (half the price of a chiro but twice the pain), and after the first time, I suddenly had twice the flexibility in my neck--chiros never helped that much....

I have been married four times, never had kids, and gave up on romance because I can't force myself to try to like sex anymore.

I got really bad candida while married the last time, and was that a headache to get rid of....

Please email me (especially if you are a middle aged woman suspecting hormones and hypoglycemia to be the root of your headaches--I should be able to exchange notes with my mom, but she is a diabetic who won't stop eating chocolate ice cream, so it is always pretty much a one-way conversation with her, bless her heart. She and I have always competed for attention for our bad health, and we both have suffered from being accused of hypochondriacism.)

Use my personal email for more prompt communication:
veerybird@speedexpress.net

LisaJeanne <veerybird@hotmail.com>
Thursday, January 13, 2005 at 10:57:43



I never thought I'd find a site like this. I am only 17 years old, but I've been a migraine sufferer since I was a baby. I used to get them when I was still in the crib. My parents didn't know what was wrong with me. I had to have an MRI to make sure I didn't have any tumors before they would diagnose them as migraines- that's how bad they were. I still get them, but less frequently. The last one I had was the day after Christmas, so I'm due for another one soon. I don't know about you guys, but the best thing for my migraines is Excedrin Migraine. It makes it go away in about an hour or so. But that's better than having it for days, like usual.

Stephanie <funkey987@yahoo.com>
Wednesday, January 12, 2005 at 15:35:14



I've been experiencing 3 to 5 Migraines a week for roughly 33 years now. They started at age 18 and for the first 20 years I was so dissapointed in the available treatments that I went without and just kept throwing down the aspirin. I'm currently rotating the Triptans and getting some success and using Hydrocodone but no more than 20 pills a month. I'm taking 80 mg of Propanolol twice a day but it does not seem to be working and I feel like I'm in a daze. People cannot imagine the pain I go thru. I don't even try and explain anymore. The big trigger word gets thrown around all the time and I know that there are specific factures that contribute to Migraines but my big trigger is just being alive. It seems like no matter what I do or don't do it is temporary at best. Well all I can say at this point to all the Migrainers out there is hang in there, it can only get better.

Tom Ross <Tom.Ross@wilsonelectric.net>
Wednesday, January 12, 2005 at 15:18:59



I am an 85 year old MD who has a malignancy (lymnphoproliferative)which responds well to chemo. I also had undiagnosed combined system disease for 5 decades. My brother died from chronic headache. We both began with classical, infrequent, short lived, severe migraine at age 11. For the past decade, mine have changed into less severe, daily headache. I would much prefer the skullbusters of my youth than the latter day daily ones. I ride my bike more than 1000 miles on geezer - friendly rail trails. All medicines tried either don't work or are not tolerated. Now I will try to give up coffee and I dread it. Is there anybody out there who has clearly responded to that modality? If you have, then please let me know. It would be a big, big help. Fowler White

fowler f. white <fwhite01@optonline.net>
Friday, January 7, 2005 at 17:25:40



Well, another day with another #5. It sucks but it could be worse. At least I'm through with the number #8-10. My gp is the best gp I've ever had in my whole life. I can't believe I found her. It was almost worth moving to this godforsaken, backwoods, hillbilly farmin' community and into this rustic, broken down trailer just to find her. I'm thinking alot about the beautiful ph, third floor, overlooking the beautiful city landscape, close to shopping and emergency rooms and a pain specialist, in a great community with a cool, refreshing pool, weight center, central park. Ohhh, how I wish we could still afford it. How I wish I was back at my job, feeling successful and taking on the challenges of making the next deal. I wish I could still handle that work. I wish we didn't have a hundred grand in medical bills that we still owe and can't pay. I wish I wasn't hiding out from collections. I wish we didn't have to go bankrupt. I wish we still had real insurance rather than this state regulated shit that doesn't pay for more than 6 meds a month and won't allow me to get some of the meds I need and can't afford. I wish my husband earned more money and that I wasn't the main bread winner. I wish, I wish, I wish....

I hope that I can go back to being a big shot one day. I wish that I can go back to making some money and being materialistic and affording gucci, dolce and gabana, amalfie shoes, Liz (my friend), agh! I miss shopping! lol

C'est la vie! I have the things that are really important still, family, love, and compassion. :)

Jessica Polson <jessipo2003@yahoo.com>
Thursday, January 6, 2005 at 14:27:28



It's been awhile since I posted here. It always makes me sad when I see the young post here, I hope they fare better than I did during my 20's and 30's. I do not want to see another person worn down to a nub by migraines, because without effective treatment and lifestyle changes, that's exactly what the migraines will do. I've been on a "beta-blocker" for several months now, and they've been effective for me. It's been nice to free from my jailer! I still marvel at the fact that we all feel that bad and yet, we don't die. How can we experience that much pain, throw up that many times, and live? Doesn't seem possible, but we always do...

TC <tc_triple3@yahoo.com>
Wednesday, January 5, 2005 at 23:23:14



I AM 20 YEARS OLD GLAD IM NOT THE ONLY ONE OUT THERE WITH THESE PROBLEMS WHEN I GET MIGRAINES I GET A HORRIBLE NUMBNESS DOWN ONE SIDE OF MY BODY AND I GET SPEACH PROBLEMS AND SIGHT BLURNESS AND BLIND SPOTS USUALY IN THE LEFT EYE AND USUALY THE NUMBNESS IS FROM THE LEFT TOO FROM MY FEET RIGHT UP TO MY HEAD I ALSO GET REALY CONFUSED TO WARE I AM I ALSO FEEL SICK AND GET A REALY SORE HEAD AND I AM SCARED EVERYDAY THAT I MIGHT GET ONE WHEN IM DRIVING OR WHEN IM AT MY WORK I ONLY USED TO GET THEM ONCE OR TWICE A YEAR BUT THEY ARE COMING MONTHLY NOW IS THEREANY MORE INFO OUT THERE AS I CANT GET AN ANSWER FROM MY DOCTOR AS TO WHY I GET THESE FEEL FREE TO CONTACT ME THROUGH EMAIL....

DARREN TAYLOR <DARREN_TAYLOR@HOTMAIL.CO.UK>
Wednesday, January 5, 2005 at 15:01:57



Hi all.
I haven't visited this site for a while, but I have still been having migraines, BUT.....
THE END IS IN SIGHT!!
This info is relevant for the ladies only - sorry fellas.
On the 14 December I had an IUD (Intra Uterine Device) inserted called a Mirena. I had happily been on the pill for years when I went to see my Gyno and she told me that some hormonal migraines are actually caused by the secretion of some of the hormones in the lining of the uterus (sorry to get so graphic - but it may help someone, I really hope so). So they knocked me out and I had the Mirena put in (go for the GENERAL anaesthetic girls - you don't want to be awake for that procedure). Anyway the good news is I haven't had a migraine since!! The Mirena itself not only acts as a contraceptive, but it releases a constant low dose of hormones - no sudden HITS of it when you take your pill in the morning!!
Anyway, I hope this information may be of help to anyone out there but it seems to be working for me.

Have a good New Year.

Emma.

Emma Norris <emmaleahnorris@yahoo.com.au>
Thursday, December 30, 2004 at 05:22:10



It has been a few months since I last posted. I have now been off all analgesics since June of this year and have only had a couple minor-medium level migraines. I also run over 4.2 miles 5 days weekly, although some weeks I only make it 3-4. So far, this seems to be working. I only take Indocin for pain. Prior to this new regime, I was having 3-5 migraines weekly. A few weeks ago, I went on a chocolate candy bar binge and noticed a pronounced increase in headaches, so I will refrain from eating chocolate as much as humanly possible.

Hope this info may help.

Dennis

Dennis McCowan <dennismccowan@yahoo.com>
Monday, December 20, 2004 at 12:25:03


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