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'm 26 years old and just found this website. I have suffered from mirgraines since I was 12yrs old. In the past year the have gone to Cluster Mirgraines. I have tried all kinds of meds and can't find any meds that work with me. I'd like to try and find a food list and start trying to figure out what foods cause me to have headaches. I've figured out that if I don't get enough sleep or if I don't eat with in a schedule I will have a headache. Mine are so bad that my boyfriend has to deal with me begging him to kill me. He is great his sister has them so he knows how to keep me as comfortable as possible. This is no life for anyone though. I would love to live a normal again. If anyone has any suggestions please feel free to email me.

Renee: lilredryder26@yahoo.com

Renee <lilredryder26@yahoo.com>
Monday, June 16, 2003 at 15:04:20

Hello. I have been a migraine sufferer for over 20 years... I wanted to find a place to tell other sufferers how I have not had a migraine headache now since January... and it is June now.
I believe I have cured my migraines....!!!

I have almost totally eliminated REFINED sugar, refined carbohydrates, processed food, junk food, and bread from my diet.
I eat these things as "treats". This has truly worked. I look and feel better than ever.
I went through 2 days of moaning "withdrawal" on my bed, but it was worth it. I kept telling myself I was going through withdrawals, because truly I was. It was about as bad as a "medium" sized migraine....

I have lost 6 pounds, and I feel great. I have gone through heat spikes in temperature, and did NOT get a headache. This has been major for me... and I want to share my story if it can help.

Some background: my headaches were always left sided, always 3 day-ers, always nausau involved, headaches were unrelenting day and night for 3 days usually. The most helpful medication I tried was Midrin...(at first sympton, 2 the first hour, one the second hour, one the last hour) and I tried many medications.

In December/January, I started to get alarming type headaches where I wanted to go to the emergency room, and hopefully get a shot BUT I was afraid to do this because I was alone and that I would cause a scene because I was desparate with pain...(nobody would believe how much pain I was in) and that I would not get the help I so needed. I was in fear of the whole hospital scene that could happen when I was in that state, alone, with no support..It made me feel nuts, and I was afraid others would think I WAS nuts.

Some things I knew for sure that caused my headaches were:

l. sudden temperature jumps into warm/hot weather, especially the first in the summer season.

2. (truly evil) ASPARTAME totally caused headaches, I knew this after I bought 'equal' to replace my sweet n low. (in 7 days I had a huge headache that never went away, until I figured it out!)... Then I found out so many food products contain aspartame, it is in so much processed food. It is in everything! I gave up Diet Cokes immediately. --- I replaced diet cokes with homemade lemonade - made out of bottled real-lemon juice and water and sweet n low. It's a better drink!

3. MSG - totally caused illness.
4. Not getting sleep.

These were the things I knew for sure, others I couldn't nail down.

I am better now. Of course, it's a known FACT that health foods and health food awareness can dramatically improve health problems. there is so much written, so much inspiration.... Why it took me this long to totally 'get it' -- that it relates to MIGRAINES... well, I finally 'got it', and got rid of my migraines and the drugs that went with them.

Some days, I just eat a bunch of raw almonds, fruits, cherries, biscotti, coffee, salmon with salad.... and it has changed my life.

Well, I just wanted to share this with you. Pure, live, raw health food... it makes sense doesn't it? I'm a believer, and I will never go back...

Because I have a headache free existence now, and because I have really broke my ben'n'jerry frozen yogurt habbit, crackers, bread, carbo addiction.... there is no way to go back to my old diet... but I will have them occasionally and I'm fine!

Hope this helps someone.... please, I hope you at least try this and commit to 60 days of eating this way.
Then you'll know...you may know in only 10 days...
Good Luck! Kylie

Friday, June 13, 2003 at 19:47:30

I came across this page looking up "hemiplegic" and "basilar" because I didn't know there were different kinds of migraine. I thought you either had an aura or you didn't. The link for this page was advertised to tell physicians and others about the pain of migrane.

The only way I can describe it is that I have a headache so bad that I want to be shot.

Reading other people's entries actually made me feel better. It looks like I've tried everything (except the Botax, we'll have to see about that) and thankfully I don't have headaches everyday. There have been week long headaches in my life, and we all know about the days that are just wasted and missing now.

I hate to admit that the best treatment for me is when I get to go to the emergency room, and they feed me IV the anti nausea and heavy duty painkiller (morphine, demerol, etc.) with a "to go" package of Vicodin. Without the Vicodin or Darvocet or codeine you'll have a rebound headache from the IV drug. For a while I had Tigin suppositories (for the nausea) and then tylenol with codeine (for the pain) and I could go to sleep and wake up without a headache. My doctor isn't too keen on the painkillers though. I guess you could become addicted. I can't see how, I pass right out. Kind of hard to keep a job and family then, huh?

It seems like there's some progress being made (I've had these since I was 14 and I'm 41 now) because there's something out there instead of just suffering like I did years ago.

My daughter is 15 and she's starting to get them now. I sure hope science will come up with a really good medicine so her life won't be like mine.

Rose K. <fknott5@aol.com>
Wednesday, June 11, 2003 at 22:21:46

Hello everyone! Well, the divorce is proceeding as slow as possible and it has really made the headaches worse due to the tension and worry, but I feel certain that once all the messy legal stuff is over, I will start feeling much better. I know I won't be "cured", but I think the migraines might back down some. There was always alot of tension when I was living with my soon to be ex, and several doctors even said he was a major trigger for them. I guess I am just writing this to let anyone who is in a similar situation (no emotional or physical support at home) might want to consider their options. I am now living with my mom, who has been my #1 support through it all, and it feels great to live with someone who actually cares about how I am feeling and ready to lend a hand to me when I can't do something. She is always telling me how strong I am to keep going on the way I do even with all the pain and depression that comes with migraine. It has made a big difference in my outlook on life in general. I hope everyone stays as pain free as possible and I am always here if anyone ever needs to vent, chat or exchange info!!! Take care, all!!!

Bonnie <TheBelle2@aol.com>
Thursday, June 5, 2003 at 12:35:21

I just realized from the entries written that indeed one could suffer from a memory gap� I do experience this even the most common person that I often with sometimes eluded to recall his name. At first I thought it is due to the anesthesia because of childbirth but now it seems to be all related to my being a migraine sufferer.
Remember the myths I have told you before� I have a guy friend who is also suffering and one of his treatments is to drink a pint of coffee everyday just to escape from attacks. But now I am really confuse as some people say that caffeine can indeed trigger attacks� now is coffee really a cure or a cause????? Eager to find out�.

just want to thank o.brown for the short note she sent me....

Val <rotsen_29@yahoo.com>
Thursday, June 5, 2003 at 02:39:14

I have been getting migraines for about 20 years, I started getting them when I was 13. I have tried several medications, Imitrex injections no longer work for me. I take daily medications, however I still get a migraine at least twice a week. Sometimes I go in for shots of Morphine and Phenogen. In 1998 I lost my hearing in my left ear and the left side of my face is numb. Pretty strange. The doctors and neurologist I have seen all say the same thing, they are not sure what caused it. I think it has to do with all the severe migraines I get. Anyway, I am seeing a new doctor and she wants me to stop taking my daily medication and start Botox Injections next week. Has anyone ever tried this? Your input would be greatly appreciated.

Painful Migraine Sufferer in California

Susan <srjrippey@aol.com>
Thursday, May 29, 2003 at 23:45:21

My doctor says I might have a rare kind of migraine called Basler migraines. The only problem is I can't find any info about it! If anyone knows anything about it, please send some info to me!

Lindsay Wynne <thewynnes@msn.com>
Wednesday, May 28, 2003 at 18:58:49

Hello: I need help. My daughter is experiencing migraines that started 4 years ago. She is 15. They have progressively gotten worse. She has been to 4 neurologiest, and on 24 different meds. No help. Does anyone know of headache clinic or doctor near Buffalo NY area?
We have tried acupuncture, which will take migraine away, but no lasting effects, we did that for almost 1 year.
We are presently trying kinesology.
She has experienced hallucinations, which didn't start until she took Topomax. After getting off them, still got them. She has severe depression, suicdal thoughts. Depression and thoughts are said to be to having so many migraines. She also has an anxiety disorder, probably because she is unable to get to school and is an honor student who is getting behind.
She is seeing a neurologist and psychiatrist, who do not agree. One believes it is a rebound situation and other not.
Anyone with experience with depression / migraine / hormonal fluctions / anxiety? A lot for a 15 year old to handle. Saw a web site for great lakes pain center in Wisconson. Anyone ever received help from them?

Debra Jackman <AAFarms@localnet.com>
Tuesday, May 27, 2003 at 15:16:45

I get migraine variants - severe pain in back, shoulders, neck, jaw - usually on one side, accompanied by nausea (lots of burping) and pressure in the eye area. After many doctors, tests and meds, I found the elimination of caffeine, alcohol, chocolate and MSG has helped tremendously. It took several weeks to see any difference, but the headaches started coming less frequently. (Quite franky, I never believed that the elimination of these foods would make any difference). It may not work for everyone, but its worth a try. One other note - I also found that with compazine, if I controlled the nausea, the headache would not be as bad - perhaps breaking the "cycle" itself. Good luck.

Sunday, May 25, 2003 at 19:47:52

I have been suffering from migraines since I was 8 years old (I'm 26 now) and have not been able to find anything concrete to tell me what is causing these attacks. I have been to a neurologist, eye doctor, physiotherapist, chiropractor, tried acupuncture, preventative meds, and massage - it seems like everyone has a different solution or idea on what is causing this. My doctor has said, that my migraines are caused by hormones and won't go away until I hit menopause. And believe me, I would look for a more supportive doc if I could find one! What I am looking for is a website where I can keep track of my attacks, food I eat, stress level etc. so that I can try and figure out what my triggers are. Can anyone recommend one? A few years back, there was one that I used but I can't remember what it was called. Anyways, I think this site is amazing. I feel like there are other people out there - it's not just me.

Lisa <lisa_hammy@yahoo.ca>
Sunday, May 25, 2003 at 13:58:23

I have 5 to 15 migraines a month. Have been having migraines for 15 years now. I have tried everything recommended to help maintain them. Beta Blockers, Channel Blockers, birth control, depression medication, 2 different antiseizure medicines, botox, accupuncuture, calcium, coral calcium, vitemin B. Some helped a little, others made them worse. I take Imitrex and Naproxson when I get a migraine and they usually work. I would really like to find a cure.

Debbie Bybee <clucky59@aol.com>
Saturday, May 24, 2003 at 21:48:31

Hey everyone! Well, as you can tell by the new address, I have gotten a new acct and am in the middle of a messy divorce. This is both good and bad. I feel bad for my son for having to go through this at only 4 1/2, but on the up side, I have found that I only have to take about 1/2 of the pain meds that I was taking while I was living with my soon to be ex. I still have them every single day, but they are on the lower end of the scale compared to what they were. I was used to living with at least a 6-10 daily, and since I left my husband, they are staying at around 3-5 unless I am really having a stressful day dealing with the divorce. I am living with my Mom and she is my best support and that makes it easier too. My husband is trying to take physical custody of my son and that is stressing me out big time, but I feel when it is all said and done, as long as I get physical custody of my son, it will start a new phase in my life. If anyone has ever gone through something like this and had positive effects, please feel free to e-mail me. Also, if anyone needs to vent or exchange info or just chat about migrain, please know that my mailbox is always open to everyone!! Take care all and be as pain free as you can possibly be, and know we are all survivors!!

Bonnie <TheBelle2@aol.com>
Friday, May 23, 2003 at 09:39:18

I was wondering if anyone knows of a birth control pill that may be better for migraines. My doctor believes my migraines are due to the birth control pills and now I am just trying different kinds.

Mary <hjjt55@yahoo.com>
Monday, May 19, 2003 at 18:20:30

I haven't visited this website for a few months, but I'm still grateful you all are out there.
Right now I'm 'detoxing' from chronic ergotamine use. I first had it prescribed in 1977 when neurologists considered it a godsend, I used it as prescribed (albeit chronically because of chronic headaches), and now the medicine men are telling me that my favorite drug will probably cause a stroke.
So, here I am at the keyboard with teeth clenched (the physical therapist on the headache team said that's another thing I've got to stop doing...) complying begrudgingly with doctor's orders.
There's a couple of valuable things I've gotten from my first office visit at the Specialty Clinic for Headaches of the Rich and Well-Insured (sic); One is that the reason none of my prophylactic drugs have worked is probably because my bloodstream has never been completely clear of ergot derivatives for a couple of decades now.
Another thing I got from the visit was in one of the books they had available, which was VERY forgiving of disability caused by migraines. One message I get from most of you is that, just like me, you're trying to keep active and maybe even compete with people who think of headaches as something aspirin was invented for and nothing more. The book kept emphasizing that migraine and migraine variants are a primary disease and that we are just as disabled as someone with other manageable diseases like diabetes or epilepsy; our headaches can be controlled but not cured and we sufferers have to be realistic about accepting our own limits. (Tough to do when you have to earn a living, raise kids and/or live among non-sufferers who do not believe in disabilities they cannot see.)
So, I'm convincing myself that I'm not really in felonious violation of my puritan work ethic, I just don't consistently do mornings. Afternoons. Evenings. And of course, forget Night shift. Rather, I savor my golden moments of productivity and I'm deeply grateful for being underemployed because at least I've found a job which can accomodate the Migraine Goddess.
God bless us, every one!

Marilyn <Marilyn.jess@pressenter.com>
Wednesday, May 14, 2003 at 18:50:41

Bryant - Have just read your message regarding the symptons of the migraines that you have been experiencing. I wanted to - in a rather bizarre fashion - put your mind at rest. The symptons you describe of not being able to speak - not being able to make sense of your thoughts or speaking processes - of not being able to make your speech relate to your mind is all very familiar to me - The most frightening thing is when I cannot remember names and information about my nearest and dearest - when you cannot bring your own childrens name to mind you know you are really in big trouble - This is the very first time that I have 'talked' about my migraine - It scares me too much - It is such an integral part of me and yet is is a part that I keep hidden away - from me as much as anyone else - to talk about it is to admit to it and to admit to it is failure - Failure of what who knows - only other sufferers could understand this - as I suspect we all feel this way - Anyway Bryant - the loss you describe is one I experience from time to time - NOT everytime thank goodness but enough for it to have scared me witless - If it's any consolation you are normal - Normal for US anyway - Lynette (England)

Friday, May 9, 2003 at 16:08:33

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