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 24 and have had migraines since age 16. Originally, I may have had 2-3 a month but now I am running about 12. I tried Imitrex for several years, but developed a reaction to it, so I have been on Zomig for about five years. I have also been on several preventative medicines, including Depakote, Topamax, Inderal, and Celexa. Currently I take Inderal and Zomig. My husband and I are just started trying to get pregnant, so I have been off my birth control for about six weeks. Since the migraines have intensified over the years, I am willing to try almost anything. I have seem my mother suffer through them all her life and I have seem her miss out on so much in mine and my sister's lives as well as her grandson's. I am up for any suggestions. I have been to two nuerologists and had a CT scan. Because we are trying to get pregnant, I am looking ahead and seeing at least forty more years of migraines and missing out on our children's lives. Is there anything that can be done?

Leslie <lrenee12@hotmail.com>
Friday, March 9, 2007 at 13:43:39

My son is 15 and has suffered with migraines since the second grade. We have seen neurologists, ENT drs., homopath drs, chiropractors, massage therapists, etc. Every year his migraines get worse. They tell us they will get better when his hormones settle down. He has missed over 50 days of school this year. He has tried all of the tritiptans, imitrex,etc. None of them work for him. He has tried tompamax, nortriplyline, antidepressants, antiinflamtory meds, narcotics, etc. After exhausting nummerous drs, (many of them throw us out after them find out they cannot fix the problem, one told us he needed a psychologist) we are going to the Children's pain clinic. The first visit with the dr. cost $630.00. He took my son off of notriplyline and tompamax. I thought we were getting some benefit with the notriplyline. Since he discontinued use, he had a dailly headache. They put him back on and are trying lexapro. Today they told me to send my son to school with a #9 and #10 headache. They have many kids who do it and survive. How can someone learn when they are in so much pain and doped up on meds, tizandine 6-8mg. 2x, tizandine 12 mg at bedtime, vicodin 2 prn @ 6hrs, and diazapam (sp) at bedtime? There goal is to condition my son to function on headaches not necessarily to relieve the pain. This is not acceptable to me. Does anyone have any other suggestions? Thank you.

Maggiealone <margaret@mmporter.com>
Thursday, March 1, 2007 at 03:21:02

I am new to having migraines, actually I had my first one about two months ago. My husband and I just had our first child in May of '06 and then all of a sudden I woke up one day with the worst migraine of the century. I couldn't move, open my eyes, or hear any noice of any kind. I thought I could just sleep it off and I would be fine - wrong! This migraine continued to linger on to the next day and the next. I was in so much pain. I finally went to the hospital, I couldn't take it anymore! Well of course they just gave me a shot to put me to sleep and sent me home and I made an appointment to see a Neurologist the next day. Unfortunately, I was still having the migraine. The Doc explained to me that I could have a static migraine so he prescribed me Topamax, Maxalt, and Elavil. The next day, still the same. Boy was I not a happy camper! I was in the worst pain in my life. I called the Doc back and explained to him that the pain was getting worse and I could not take the pain much longer. He admitted me to the hospital that same day. Out of much relief that I was finally going to get better, what a mistake! The nurse could not get the IV in my arm and she tried numerously. My arm was turning blue. Finally, she insisted the IV team come and put it in since my veins looked dehydrated and were very small and thin. "Well, don't you think that would of been a good idea 8 tries ago?" When the IV team got there she had a hard time getting the IV in and insisted someone else do it. When the other person got there I was beginning to get very ill. He finally got it in and I was on my way to recoverying. The Doc put me on a DHE Protocol, which burned like you know what. They were giving it to me every 8 hours, but I was not feeling any better. When the Doc came in he told me that it would take a while for it to break that migraine up, if that was what it was. "What does he mean, if that was what it was? What else could it be?" That's when they wheeled me down to do a MRI and a MRA. Thank goodness everything looked fine. They also did a brain wave test and it came back normal. The Doc explained to me that it was going to take several days for the DHE Protocol to work, I was going to have to stay there for at least 5 to 6 days. Great, just what I need. On the 5th day, I was still having the same migraine. I was so mad!!! My head was about to bust open. Finally, that next morning it started to wear off and I couldn't believe it. I never thought I was going to get rid of it. However, my Doc explained to me that he thought it was a hormonal embalance that it could possible happen again and very often. Not the words I wanted to hear. I am taking Topamax 50 mg, Maxalt 10 mg, and Elavil before I go to bed. These meds seem to be doing the trick. For those of you who don't like Topamax, make sure you give it a try for at least 2 or 3 weeks. It takes a while to get use to, but they are my life savers.

Is there any new mom's out there that are experiencing this same thing with having headaches after their first child? If so please e-mail me and tell me if they are frequent. I would really appreciate your advise.


Kimberly <ksmith7@brenau.edu >
Friday, February 23, 2007 at 15:42:48

I did not have any headache for 6 days and was decreasing my Excedrin use, and then on 2/14 I ate 2 squares of Gadiva Choc. and felt sick to my stomach and then the next day had a migraine all day and used up the rest of my midrin prescrip. I do not want to get that refilled, but would like to ask doc for something else to try. I am afraid of getting into a rebound situation. Seems like all the meds can get into that bad pattern. I know that chocolate is bad for me, but I have such a hard time giving it up. I feel deprived!!

Karyn <boxerpaws8@hotmail.com>
Sunday, February 18, 2007 at 18:56:46

Hi there

I have read a lot of your messages with great interest. The reason I am writing here is that I have a husband who suffered with migraines from about the age of 11 - 38 and hasn't had a migraine since December 28th 1999. The reason is he had an extremely sudden and excruciating pain in the back of his head which landed him in the A&E department of our hospital. They did various tests - lumbar puncture, ECG, CAT scan and MRI scan som 4 months later - but to no avail as to find out what caused this extreme episode. A young doctor at the time thought it was something related to a subarachnoid aneurysm, but no evidence was found - so why am I posting here you may ask?

Well my husband went from having a migraine every 2-3 months to having a continuous headache - yes - all the time - it never goes away! To date he has had it for 7 years 1 month and 17 days! The nearest diagnosis we can come up with (From our own research is Hemicrania continua) as although the original headache was at the back of his head, the pain he feels now is to the right of his head at the top spreading slightly towards his forehead. When he gets more severe episodes it is accompanied by drooping eyelids on both eyes and a runny nose.

We got no help from neurologists in fact they didn't want to see him - it was only the fact that I insisted very strongly that we got a referral at all and the same went for the MRI scan. Here in UK we are at the mercy of the NHS, and as my husband was forced to give up his fulltime job because of this we were unable to afford private treatment.

I would be interested to read of anyone elses experience of continual headache - especially that started in such a dramatic manner. So far we feel that my husband is alone in his experience, although it is really encouraging to read some of your experiences here, which makes us feel that maybe he isn't alone. I am sorry that you have had to read my interpretations of things but my husband isn't able to type well.

Thanks for reading this, and thanks again for the time you have all spent writing your own accounts!


Jo <jo@farmercrowlas.freeserve.co.uk>
Wednesday, February 14, 2007 at 10:14:21

I am still trying to go off all of the pain meds and OTC drugs and follow a strict diet. (this always sounds good at first and then gets harder as time goes on) I had a milder migraine 3 days ago and took 2 midrin and 2 excedrin and had to lie down for most of the day. I have been through horrid heavy-duty withdrawal from T#3 and don't like to take midrin because it does not help that much, makes my heart thump hard, and also I am afraid of rebound. Three days ago I stopped eating cheese. Most days I have been using just 2 excedrins a day and that is good for me, because I was using 4-6 daily. My head is feeling clearer. When I get my bad migraines, they are always on the right side of my head and pain is also at the base of my neck. Ice seems to just make it worse. They last for 18-20 hours, have nausea, and sensitivity to light and sound. When the vomiting starts, I vomit so severely that it scares my kids and dogs and I cannot stop. I scream and cry because I cannot just stuff the pain anymore. Sometimes I feel that I will choke because I cannot stop vomiting and my throat gets so raw. When it is bad, I am too weak to stand, but cannot lay down because of the nausea, so I am up and down. I have read some people who say that exercise will stop their pain, that used to work for me sometimes when I was younger, if I could take a long and brisk walk, it does not seem to work now, maybe I do not walk fast enough now..ha...ha...I will keep writting about how my experiment is going, if anyone may be interested.

Karyn <boxerpaws8@hotmail.com>
Saturday, February 10, 2007 at 21:35:20

I have spent a lot of time reading letters on this site, and it is very helpful to hear from others that have this disease. I never thought of it as a disease, but I guess it is. For the first 10 years I had migraines, I just suffered in silence, not knowing what to do. Then I became so frustrated that I was determined to work towards an answer to the pain. I have tried many different medicines and such and as many of you know, things will help for awhile and then stops helping. I discovered Tylanol 3 and that worked for several years, but I started using more and more, out of fear of an attack, and got into bad rebound. I have also used a lot of excedrin, at least 2 a day for many years. I have seen doctors and specialists none of them helpful. I became so angry that this was affecting my life so much, so many days spent in dark rooms, so much pain and feeling hopeless. My new aproach is to go off all drugs and to follow a strict diet, testing trigger foods. I have not eaten MSG or dairy (except mild cheeses)or any preservatives or flavor enhancers for many years, but now I am going to go off chocolate, caffine, cheese, tomatoes, soy, nuts also. It is very hard to live any type of active life while on this diet, but I do know that it can be done. People just think that you are very wierd because you will not eat anything and it is impossible to explain. If they could have the intense pain I have had for years, they would understand you will do anything to get rid of it and pray for relief. They think you are being overly sensitive but that is not the case

Karyn <boxerpaws8@hotmail.com>
Friday, February 9, 2007 at 22:16:31

Well I have finally realized that I have a terminal illness, not in the sense that the headaches will kill me but in the sense that will make me suffer for the rest of my life. When you tell someone you have migraines, it sounds simple but at this frequency and intensity it is unbearable. When you negotiate with God for sleep and to make it through the hour or the day, what is your quality of life? This should be the best time of life, I just got a promotion, a raise, my design work is winning national awards, I have the opportunity to go and work for major advertising firms. I have the opportunity to realize the career I have always wanted and I'm at my most hopeless because of headaches? Topomax, Zomig, Imitrex, Maxalt, Midrin, Relpax, Celexa and the list goes on and on for 13 years this has gone on and I'm only 29. When is it too much? What do you then? Do you ever feel like you hate your Dr. or that they really don't care or understand?

Karrah <jcharles4@ec.rr.com>
Sunday, February 4, 2007 at 11:01:13

Well the similarities are to much.. as like you my name is KayLa, and I'm in high school (sophmore)...
My migranes actually started this New Years Eve.... at exactly 9 o' clock.
I had my best friends over, and my sister had some friends over, my grandparents and parents were there... at at nine o' clock I was pouring a glass of pop when I said OMG Mom, my ey e is upset...
Then my Mom said sit down, let me see. My parents discussed it, and we ended up in the ER, The thing was that it was said to be an ocular migrane... Though I had no head ache.....

Well long story short,, and a short one shorter... I've been to Iowa City, seen the legendary Dr. Lee, had many MRI's and an MRA... Ct scans...

Now the pain sets in... My head HURTS!!!! On Monday night (Jan 22nd) I got very nauseous, dizzy, and was in desperate agonizing pain... Over this last week, I'm in sooo much pain... but it comes and goes... Now they are thinking that I have cluster headaches, an ocular/retnal migrane, as well as a classic migrane...

Well this is my story...
Please let me know if any of you suffer from several kinds...


Hi Kayla <zroni@sbcglobal.net>
Friday, February 2, 2007 at 11:13:54

My name is Lilo, I'm 18, almost 19, and I've had migraines for about ten years, though I thought they were sinus headaches until about a year ago. A year and a half ago I had two sinus surgeries to fix a terrible sinus infection, a deviated septum, some sinus abnormalities, and these terrible headaches I was having once or twice a month. But after the surgeries the headaches increased until they were happening every day. When infection and surgical complications were finally ruled out, someone suggested I was having migraines.
And I was. I was diagnosed with �Status Migrainous�, or a migraine that is constant and never goes away. Recently I was told this is happening because the sinus surgeries made my sinuses into a kind of wind tunnel and turned my low barometric pressure trigger into a constant problem.
As the year has gone by I have gotten sicker and sicker. My migraines get worse all the time. I used to only get nauseated, now I can�t stop throwing up. The pain has become uncontrollable. I have tried every medication there is, with little results. The anti-seizure medication my doctors put me on not only caused a seizure that made me leave my college of choice (the doctor hade me stop taking them way too fast) but stripped all the vitamin D from my body. In December this caused my joints to swell and fill with fluid, causing such pain and stiffness that I could not walk or bend my knees, or even turn over on my own.
I know the only way out of the mess is to stop taking narcotics-which I have been on for over a year (the doctors hand them out like candy, and I admit to a addictive attitude about them, though considering they are they are the only thing that brings relief I think that�s normal) so that the Topamax I am taking has a real chance to work (it has done most of anything I have taken.) But I am having a terrible time with it. I�m trying to withdraw gradually, to avoid full withdrawal. I was doing well up until 6 days ago, when I was hammered with a terrible migraine spike which will not go away. I need help; I need support, from people who understand this. From people who have gone through this. I had a real life before, plans, goals, I was driven. Now I�m isolated and alone and in pain all the time.
I suppose, as my mother has said, it takes a ton of will power to purposefully put yourself in pain. I need help from someone else who has done it. I need someone who understands me. Please email me if you can help, or if you�re in the same boat, or if you can think of anything.
Thank you

Lilo <LSDstitch@aol.com>
Thursday, February 1, 2007 at 00:38:45

hello. i am 21 years old and i suffer from chronic daily migraines. i have them EVERYDAY and nothing helps. i've had numerous tests ran (MRI, CAT scans, spinal tap, eye exam) and everything is negative. i have tried many many medicines (topomax, lamictil, fiorcet, percocert, lorotab, darvocet, propranonol, elavil, imitrex, relpax, tordol, phenegran) and many more. nothing seems to help, i am taking elavil and propranonl now, but it doesnt seem to help either...if anyone has any suggestions, please write me back, i could use all the help i can get! thanks!

jessie <j_ez_16@yahoo.com>
Tuesday, January 30, 2007 at 23:05:31

I have been having migraine headaches since I was 20, and I am now 58. I have tried a lot of different things, most recently Tylanol 3, which was working for several years, but I gradually used more and more and then my doc said I could not have it anymore and I went through terrible withdrawal headaches with nothing but Excedrin. Horrible pain and vomiting so bad I could not breathe. I am now trying to avoid all triggers, chocolate, dairy, citris, nuts, cheese, sugar, adn MSG, and caffine. I am also cutting back on Excedrin to try and get off of that. To aviod the triggers you have to never eat in restaurants, or other peoples homes, or travel anywhere and pretty much never leave your house which means no life. I live in fear of getting a bad one since all I have is now is Midrin and Excedrin and I am trying not to use much of those, and when I go somewhere all I think about is praying to not get a headache. People don't know how painful it is and how you just want to die when you have one. I don't have the tolerance to the pain like I used to have, I don't want to just lay there and "take it" like I have done for so many years.

Karyn <boxerpaws8@hotmail.com>
Sunday, January 28, 2007 at 22:17:51

Hello there everyone! I am 18 years old and I too am a migraine sufferer. Since grade 6 I have been getting migraines, sometimes weekly, and more recently, daily. Over the last month I have been getting the most terrible migraines I've ever experienced...I can't eat, I can't sleep without them waking me up, and Im nauseous all the time. On new years eve of my senior year of highschool, instead of being out having fun with my friends, I was at home...in bed...at 9:00pm, because I had a v=bloddy migraine!!!! I didn't even see midnight! This problem is taking a toll on my social life! Not only that, but Im missing alot of school, so Im pretty far behind. The most most frusterating part of this whole thing is that know one knows what its like. Sure they get the odd headache, but they don't understand my situation, so its an uncomfortable position we're all in. I'm really tired of all of this. I've been to my family doctor who's treating me wih dpression, to help prevent the migraines(without any much relief), I've been to emergency, and gotten pain killers, which are starting to help, but medication's expensive and Im not(and neither are my parents) in a finacial position to pay for all these pills. Anyways, the whole reason I wrote this is not for sympathy, or to trouble others with my problems. I would just like to be able to have support from people who know what it's like to be in this kind of agony and hopefully, we can help each other out. Please leave a note entitled:Hi Kayla on the journal page, so I can check and write you back...Thanks everyone, and I wish for migraine-free days for you all!

Thursday, January 25, 2007 at 19:20:08

I get severe, scattered , cluster migrain headaces. The pain is excruciating . I have at times loss my hearing before , during & after the migrain. My speech is also affected & my memory as well. It isn't caused from the meds. It is clearly the headache. I have tried to do without the meds & the symptons are worse. The only relieve I get is with the medicine from my DR. which is Axert & Fioricet. I feel bad for the young mothers & fathers with small children . Been there ,done that .It actually puts you down. sincerely Elaine

Elaine Rezendes <lanarez@hotmail.com>
Thursday, January 25, 2007 at 17:00:09

I recently went on a cruise and used a scopolamine patch to prevent motion sickness. It worked for that but I also noticed that I didn't get a headache the entire time. I get headaches almost daily and migraines a couple times a week so not having a headache for a week was amazing! I can't find any information about scopolamine working for migraines and wonder if anyone has ever had this experience or has any knowledge about this? I'm tempted to try putting another patch on and seeing if it works again but there were some side effects that were unpleasant (but better than having a migraine). Does anyone know anything about this?


Sharon <sabelson@mn.rr.com>
Monday, January 22, 2007 at 20:44:09

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