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 36 years old, and have had migraines since I can remember. As a child, I called them 'heat headaches' since they were brought on by heat. Now, they are triggered by a variety of things, and sometimes come for apparently no reason at all. Scents such as citrus, strong smelling cleaners (especially Fantastik and Simple Green) are the worst offenders, but heat is still a trigger. I have no aura, but begin to sweat profusely, my skin becomes clammy, and I become shaky all over. Sometimes I shiver, even though I feel hot and am sweating so much. Then comes the general disorientation, confusion, nausea, vomiting and pain! My migraines became worse over the years, and nothing seemed to help....except really hot showers (especially if the water hits the back of my neck) and sleep. When I began having migraines almost every day of my life, I tried a new doctor. As coincidence would have it, my doctor was taking a SSRI for his own migraines. I began taking Paxil, and within three days my migraines stopped completely! It felt like such a miracle...to be able to function as a normal person! I have been taking this drug for 3 years and have not had a serious headache since I began taking it. I still get headaches, but these are now easily treated with over the counter drugs. Occasionally, I still get a pain-free migraine, but I can count the number of these I have had on two hands. There are lots of side effects with the Paxil, but I am now afraid to try something else for fear that the headaches will return with a vengeance. Good luck to all of you have to suffer with these headaches. Nobody truly understands how bad they are unless they have had them.

Kevin <kheinric@hsc.unt.edu>
Wednesday, November 12, 2003 at 10:30:07



Hello Migraine sufferers,
I am a 39 year old female who has suffered for 7 long years. There is nothing I haven't tried. Last month I went to Wake Forest for my first set of Botox shots. Not really sure if it has helped, but I am wrinkle free on my forehead. My main reason for writing this is to tell you all about a miracle drug for my nausea. I am fortunate to have a doctor in the family that is wonderful and very involved with my medical choices. My nausea kept me from leaving the house. The pain was bad enough, but the nausea was intolerable. Anyway... He perscribed me ZOFRAN. It is given to patients who go through chemotherapy for their nausea. I use to have to take phenergan almost everyday which kept me in bed most the time. Not only does ZOFRAN work, but I hardly have to take it any more. It is very expensive, but half a pill works. I have been with my doctor now for about 21/2 years, he is very compasionate but I still get this medicine from my family member because everytime I talked to my doctors in the past (atleast 5 doctors)they really didn't want other input from me or my husband or my family member (the Doctor). It's sad but He treats my pain and I don't want to rock the boat. Good Luck to everyone in finding more pain free days and God help our children who have to deal with this sickness.

Leanne Priest <lqpriest@bellsouth.net>
Thursday, November 6, 2003 at 13:04:56



Hi everyone,
I am a 31-year old female who has been suffering with migraines since I was 14. My mother suffers with them too. I have been to several neurologists - Johns Hopkins, Cleveland Clinic...I have been on all the traditional, and non-traditional meds. My last med was Topamax. It caused me to lose a ton of weight - about 40 lbs. I never felt like eating, and when I did, I could only eat a little before feeling full. Anyway, I have severe migraines basically on a daily basis. Sometimes they last 8 hrs or 3 days. Long story short, the last neurologist said that I could not be helped. I have been taken off the Topamax because of the weight loss. So I am experiencing the migraines in all their glory. I have lost my sense of humor with these things since I am apparantly at the end of my rope. I barely have a job, barely able to take care of myself, zero friends. Housekeeping can be a nightmare. It is becoming very difficult to cope. As a result of the migraines I have developed anxiety/depressive disorder. However, my doctor isn't sure what came first - the chicken or the egg (some people believe the migraines are related to the psyche or personality disorders). Although, I hope that migraine can be cured, it's good to find a place where others are experiencing similar things.
Thank you

ty <tysuper@hotmail.com>
Monday, November 3, 2003 at 15:04:30



I was really glad to find this web page as I have suffered from migraines since I was about twenty six and am now forty six; supposedly they are suppose to decrease with age; well not with me.I have been through all the tests CT scan, MRI,EEG and tried every drug imaginable. The main drug that seems to work for me is the fiorinal with codeine also I am presently starting to take Inderal and Amitriptyline; if that fails I have to have a shot of demerol with graval to ease or erase the migraines. Like most other sufferers bright lights; change in temperature, noise, smells almost anything seems to set off a migraine attack. I seem to have more bad days than good; wanting to crawl into a darkened room with a cold cloth and no noise or eye or body movement; which is hard when the nausea hits.Unfortunatly it is very diffficult to live a "Normal" life when we are knocked down so much; it affects my work, social and home life and is really hard to commit to anything because you never know when the migraine is going to hit. Hopefully they will come up with a cure for all of us someday and I really feel sorry for the young people and what they have to go through. Glad I'm not alone out there even though I wouldn't wish a migraine on anyone. Wish you all well and Good Luck! Lorna

Lorna <lornedickson@hotmail.com>
Thursday, October 30, 2003 at 12:35:16



Hey everyone!I just stumbled into this site and had to add my insite. I am a 30yr old female who has been dealing with severe migraines or as one doc put it severe head pains for the past 7 years. I have a chronic migraine 24/7 besides having fibromyalgia. I have seen so many doctors and have been put on every type of meds. I have also recieved the trigger points injections and the botox shots. I have had radio frequency lessions to both sides of my head and have been advised sinced that seemed to help to have wires now inserted. I am currently on 20mg of methadone,600 mg of neurotin, and 20 mg of baclofen for 3x a day. I have to also take 80 mg of paxil due to I can't go anywhere that has flourecent lights. The lights will trigger a migaine at a drop of a hat. Usually this regimen I am on usually helps as long as I stay home. If i go anywhere with those light and/or starting my period forget it. Nothing seems to work on those days. I have a bottle of staydol and then it's off to have either 3 heavy duty shots of demerol and phenergren or up to 2 dilaudid shots. Believe me I would not want anyone to suffer this much. I feel like a walking guinea pig and a pharmacy most of the time.

Lia <liademaio@yahoo.com>
Tuesday, October 28, 2003 at 04:15:29



Hello everyone! It has been a while since I last made an entry to this page, but I went to a new doctor and wanted to share it and ask if anyone else has ever tried this approach. In addition to the intractable chronic daily migraine that I have had for 5 years I was diagnosed with myofacial pain syndrome. My back has been in severe pain for the past couple of months. My GP finally sent me to a pain management doctor (a DO) and she was appalled at the number of different meds that I was on. I was on Percocet 10/650, Valium 5mg, Lortab 7.5, trazadone 150mg, elavil 150mg and Baclofen 20 mg. She took a bit of time to do this plan, about 3 weeks to get all my medical information from other doctors and she gave me my new pain plan this morning. We have cut the percocet and the lortab completely (after being on them for 3 years) and we are now using Methadone, 10mg every 8 hours. I just took my first dose about an hour ago and I think I am starting to feel some relief. But it is a different relief than the short acting pain medicines, it is a lot more of a gentle easing of the pain, instead of the sharp clearance of the percocet. I am not sure about this and how it works, but I would welcome any information from anyone who has ever used this medicine. We are going to eliminate the elavil or the trazadone in the next couple of weeks and attempt to cut the valium use. I am not sure how that will work seeing as I just got divorced and are still dealing with the fall-out from that. Please let me know if anyone else has ever tried the methadonw medicine!! Hope all is as pain free as it can be for all of you! Take care!!

Bonnie <TheBelle2@aol.com>
Wednesday, October 22, 2003 at 15:17:30



Okay, here is my migraine story, and I hope it helps someone.
I am a female, 39, and have had migraines since I think in my 20s.
But, I remember having "ear aches" as a child and I think sometimes
these were migraines. Anyway, I have the awful, aura/nauseau
kind of migraines. They seem to follow a patter, for the most
part, and are related to that last pill in my birth control pack
before my period starts. Or the last two pills. I take magnesium,
zinc, and calcium supplements because I have been advised that
they are all good for migraine sufferers. But mine come, nonetheless.
Usually, when I have a migraine, I have to get to a dark place, a quiet
place, and drink a Coke and take some Advil. This seems to
make the aura go away quicker. Anyway, that is all I know. I
haven't died of them yet, so I feel like I can come to appreciate
them for what they are. I believe in the twenty years I have
had migraines they have made me more compassionate of others and also
more thankful for each day I have. My father died of a stroke
at 52- he suffered from migraines as well. Each time I have a
migraine, I can't help but feel my mortality, and I think it keeps
me humble.

L. Terrell <lterrell@memphis.edu>
Tuesday, October 21, 2003 at 09:29:02



I just thought I would share this with everyone. I posted in the discussion section of this site. Subject was "Am I The Only One." After 20 years of pain, I had a nerve block injection for my migraines and was left off balance since the second injection to the present day. After 9 months of using at different times, Neurotin and Effexor XR, and sick, I went for a second opinion. I want to share this with everyone, because it's the safest advice I've gotten. This doctor is world renown for his books on migraines. He saw me and said a trigger for me was the injection which caused me to look like I had a vestibular disorder. Also he gave me a list of food triggers that I have to omit immediately. The Neurotin blew me up like balloon and could not keep me standing up balanced to walk. The Effexor XR kept my blood pressure at high readings. He took me off the Effexor because there are certain medications that CAUSE migraines. There are medications that don't. He said don't take allergy medications with "D." (triggers Allegra D, Sudafed, Anacin, Dimetapp, Claritin D) they inflame and constrict the nerves in the brain. These are just other triggers for migraines. So it's a matter of trialing to find out what are your personal triggers, and eventually you can add back into your life triggers that you've originally omitted one by one. It makes a lot of sense and you are not walking around drugged like I was and trying to work. I used the summer to be a zombie and a guinea pig to trial meds. The first doctor kept adding different combinations of medication. I just started so I can't say how it works. But this business of eliminating things that start your mnigraines make so much sense. Some triggers start migraines right away, he said, and some take 1 or 2 days to make your miserable. FUTURE PAIN FREE DAYS ARE AHEAD!! PS The last two doctors I saw do not recommend the nerve block injection!!!

Beverly <Bevielou@hotmail.com>
Thursday, October 16, 2003 at 21:10:05



Hey everyone. I have posted a few times long long times ago. Been to the Cleveland Clinic and John Hopkins. Finally, just accepted that migraines are a part of my life. Only have like three or five a month now so I am a whole lot better. When I went to see the doctor at John Hopkins I was taking Topomax (this was five yrs ago). He took me off of it, saying that there was no basis blah, blah. Well last yr he publihed a book on the benefits of Topomax. Just ironic. But, I don't have anything to tell you that any of you don't know. I take 100 mg of Topomax at bed time. However, in West Virginia, we have an excellent ER. It took me 45 minutes to get through with an injection of Demerol and Phenergan. So I know that some doctors are heck but there are those few who do listen. I pray that all of you have migraine OK days. Later Jane 21/female

Jane <jhalterman@yahoo.com>
Tuesday, October 14, 2003 at 20:13:35



hi everyone!
i'm 26 and began suffering from migraine with aura when i was about 11 or 12. nothing ever worked to alleviate the pain, nausea, sensory sensitivity and all that other stuff that comes along with this disease until imitrex came out. since i've been taking imitrex i haven;t had what you would call a full blown migraine, which has been about for about 6 or 7 years. from what i can tell most of my migraines are menstrual migrianes. i have been pretty sucessful with controlling the frenquency of them by taking birth control pill packs successively, skipping the placebo and taking the active pills. i usually have fewer migraines b/c i'm haivng fewer periods. in the last few months though i ahve been getting migraines every 10 to 12 days. i was really depressed and frustrated b/c i was not having a period during the times i had gotten and therefore shouldn;t have been getting migraines. i've been having lots of sinus trouble lately so i thought that it could have been related to that and allergies, but i don't think so. i did realize a few weeks ago after my last migraine, that i had been drinking diet drinks for the past few months, and had never done so before. since then i've quit drinking diet drinks or any thing else with aspartame in it and i haven't had a migraine (i hope i don't jinx miself) in over 20 days. i'm hoping that this is the cause of the increase of migraines in the last few months. this disease seems to control you, the not knowing where and when you'll get one and what plans will have to be canceled. so it was nice to figure out what was causing some of them and be able to prevent them and take control.
one more thing and thne i'll stop rambling. i recently went to a one of the best neurologist in austin (tx) and although she suffered from migrianes herself and was sympathetic and commited to helping me decrease the frequency of migrianes, she didn't seemed to be interested in what caused the sudden increase in the past few months. she gave me lots of drugs including zonegran as a preventive. i was a little annoyed that if i hadn't listened to my gut feeling then i would have started taking this drug and suffered through the side effects thinking that that it was what was helping me.
kelley
mkrussell@pbsj.com

kelley russell <mkrussell@pbsj.com>
Tuesday, October 14, 2003 at 07:36:21



Hello again! It's been awhile since I've been on this site.
I have been getting migraines more frequently lately. I hate missing so much work. My doctor has sent me to a new neorologist he has me taking Topamax 25mg before I go to bed at night. But so far I have not seen any results with it.My doctor has been worrying about me because I 've been to his office so much lately with the migraines and when I go he gives me a shot of Demerol because it is the only thing that takes the pain away sometimes.

Sandy <GATORS9620@AOL.COM>
Monday, October 13, 2003 at 16:25:35



Well I have been awake for a while i thought i would make an entty in the journal i have made an entry on the discusion boards i would consider myself a very masculin man but these migraines will sometimes put me into tears the one that i have right now hurts so bad and there is nothing that i can do to prevent it or to help it my dr that i am seeing really doesnt care he pretty much doesnt even believe me since i was injured on the job wich is really an unusual circumstance i was exposed to a chemical from a meth lab so not only do i have this one headache that will not go away but i have the damage that was done to my lungs during my exposure when i was first exposed i would wet on myself i finally got over that i was unable to talk and i was able to get over that i could not drive and i was able to over come that but this headache i dont know if i will ever make it over this mine is unusual in that i have had it constant since
April 11 2003 it does diminish in strength but it never completely goes away I am not sure what to do about it but i guess i am rambling atm well good luck to all.


Joe

joe <Ktonos@hotmail.com>
Monday, October 13, 2003 at 04:03:35



Hi everyonen - I'm a regular to the site & I'm now on new medication for about 10 days so I thought I'd let you all know - the name of the tablets are Sibelium & I take 2 every night before I go to bed - I find that the migraines have eased considerably & I hope the migraines will fade out eventually. I wake up in the morning with no pressure over my eyes etc since I started taking the tablets.

So if anyone out there has tried them you might let me know what you think of them. By the way I'm 26 & have suffered for the past 4 years with migraine. Best wishes to all you brave people who has to live every day with this awful horrible 'thing'. Regards Lisa

Lisa
Tuesday, October 7, 2003 at 13:53:10



Wow. I stumbled onto this page on my lunchour @ work looking for any new research for relief. I am 27 and in my 10th year of suffering from migraines. I am not sure of the rating system 1-10 because I am relatively new to the "culture" surrounding this. I have cluster? migraines. The biggest trigger is the change in weather, and during my bout with a cluster, alchohol is the only sure trigger. A cluster of migraines lasts anywhere from 4 to 10 weeks and as many as three a day.

The cluster starts off with smaller migraines that seem to go on "in the background" and within a week I am having one so bad that I am writhing on the couch for 2-8 hours. At the end of a couple of months of this it takes my body/psyche about a month to recover fully which leaves me about a month of life until I go back into a cluster.

I find that keeping stress, protein, sleep and alchohol at relative constants/minimums is the only way I can minimize the impact. 3-4 "exedrine migraine" and a can of coke is a better remedy than any of the cocktails I have experimented with from my doctor(s). Part of my problem has been school. Architecture school at the top rated university in the nation is not a good bedfellow for a stress-loving condition.

Mine always happen after the stress is gone. I think the adrenaline in my system keeps it at bay until I am relaxed, usually about an hour after I go to sleep. Every 3rd or fourth I cannot stop no matter what I take and I have often been driven to a point of disparity so low I do not know how I can stand another 5 minutes let alone another 5 weeks. I had no idea how much this was impacting my life until I started reading these entries. This is why I contributed mine. I wish you all the very best in dealing with this condition and thank you for helping me to see things more clearly. Thomas

Thomas <Tomchitecture@aol.com>
Monday, September 29, 2003 at 12:00:05



Hi! I am 45 and have suffered with migraines since I was 13 years old. (Since my periods first started).I have tried every med out there, some with more success than others, but mostly no real relief. The side effects from the meds are almost as bad as the headaches. I was at my last straw when my primary care physician (a woman, and YES! it does make a difference. She was the only one to ever completly listen to me and believe in the pain of my headaches!) sent me to a neurological clinic in Buffalo, NY (about an hour away from my home). The clinic has 14 doctors who do not make fun of my migraine attacks and 1 in particular who specializes in Botox treatments. He pioneered the work about 10 years ago and still is doing research in the area. He has been giving me injections every 3 month and for the 1st time in my life, I feel truely alive again!. Botox is an actual miracle. It relives about 80% of my pain without putting harmful toxic drugs in my system. No pain! No side-effects! I still get about 3-4 migraines a month, but they are easily treated with Amerge. That is still TONS less than before. Now I can enjoy my life again. I recommend it to all those with frequent pain. You do really need to seek out a qualified neurologist for this, but it is well worth it!

Michelle Cheney <mjcheney@blair.com>
Friday, September 26, 2003 at 13:40:58


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