Journal of Migraine Sufferers


Hallo this is my first time on the journal. I've just discovered this site today and i found it very interesting. I have a little girl she is seven years old now. She suffers with migraine headaches about once or twice a week.She tries to tell us what it feels like .She explaned to us that it is like rocks hitting together in her head. She gets very sick phisically and she becomes very pale with dark circles around her eyes. She has to go in a dark room with no noise and sleep. It usually lasts about five or six hours. When its over she is very hungry and tired. We have taken her to doctors and they just tell me to keep a record of her diet to try and find out what is causing it.We did that and have not seen any pattern with what she eats before she gets them. They also said there was nothing i could give her, only tylenol. If any one has any sugestions for me please write me .Thanks in advance.
Judy <judytkd@globetrotter.net>
Harrington Harbour, Qc. Canada - Date: 01/17/99 (Sun) Time: 11:36:49 PM


Ok, Getting back on track: What do you people in the North East do when a weather system (like this past week's) starts to bring on a migraine? I haven't gotten a bad one yet, but if there is snow comming, I have a feeling I'll be getting a whopper.

stepping off subject for a moment, it was NOT JANA that I was refering to, it was the others HARSH comments. We are allowed to have our a say and I don't beleive that ANYONE is taking sides.

Back on to subject: What types of things do you do when you can't reterat to a dark room or crawl into a cave? Where I work, I put on sunglasses and an earplug so that the extraneous noise is blocked out. It doesn't help much as I work in a call center, so there is A LOT of noise. Not every bit can be blocked out :( But Hey, I need a freaking pay check.

Its a new week, Lets begin this week with a positive attitude. Lets face our illness as a challange that we need to overcome & look for new & better way of dealing with the pain & other things associated with our "condition". If you didn;t get to look at it, go to WWW.NEWSWEEK.COM and pull up the 1/11 issue & print out a copy of the article on migraines. Make copies for people who dont understand. Lets get the word out that we are tired of suffering & we need a cure! Be Well & God/dess Bless. ~Dianna~
Dianna <ghost@gte.net OR athenax97@hotmail.com>
Norwich (for now), CT USA - Date: 01/17/99 (Sun) Time: 10:12:54 PM


Hi! I was wondering if anyone could give me info on Imitrex and rebound headaches. My family physician recently prescribed Imitrex 25mg tablets for my migraines, and while they worked at first, I now find myself with another headache the day after the first migraine attack. I explained this to my doctor who simply shrugged and told me that there wasn't much more she could do for me. She prescribed Inderal and told me that should stop the rebound headaches. I'm skeptical. Has anyone else had a similar experience? Carrie :-)
Carrie <Carrie.L.2.Howard@cmich.edu>
Mt. Pleasant, MI USA - Date: 01/17/99 (Sun) Time: 09:04:18 PM
I have been on Oxycontin for almost 6 months. Coupled with weight gain and increasing headaches, my dr. has decided to switch me off that and onto Methadone. The withdrawal sucks, even with the Meth. I know nothing about Methadone, and was dealing with a screaming migraine when I had my appt. so I was unable to ask any pertinent questions. I go back in a couple of days, but was hoping someone here could share some info on Methadone. What are typical daily doses etc. I appreciate anything you all can offer. Thanks!
Julie B <JJBurris@mindspring.com>
NC USA - Date: 01/17/99 (Sun) Time: 08:30:47 PM
I have had migraines it seems forever. I am a 40 year old female. Current meds include 120 mg of indural am and 60 mg or indural pm. I take Zomig when I get an attack. The zomig normally takes away all pain associated with my migraine without any side effects. The problem right now is the frequency are increasing. It seems almost every day or other day I get another migraine. I am not sure if the zomig is causing rebounds or the indural isn't working any more. I am going to call my neurologist tomorrow to see if there is anything else I can try. I have tried imitrex; didn't work. Caffergot suppositories work, but what a pain in the axx that is. Plus I would get sick before getting better and had to go to bed to find relief. My neurologist said if the indural zomig combination didn't work she was thinking of trying some antiseizure medicines??? Any one have any feed back on that. Anything would help.
Paula Woodard <woodard@ime.net>
Lewiston, ME USA - Date: 01/17/99 (Sun) Time: 05:50:11 PM
I have had migraines since I was a little girl. I thought everyone had "sick" headaches. After I got married, I went to a doctor and was told they were migraines. My headaches seemed to be hormonal. Three to four times a year and one day. When I was in my mid-forties they got really bad 1-2 a month and sometimes 3 days. Now that I am in my fifties I get a headache every 2-3 months and they last 1-3 days, but they are not as severe. I have a strong family history of migraines and have passed this along to my daughter. She is now 31 and I believe has had migraines from infancy. My aura is that I get cold and I mean cold. I cannot get warm. I would like to know if anyone else has experienced this.
Ann <Kiempisty>
Sterling Hts., MI USA - Date: 01/17/99 (Sun) Time: 04:39:20 PM
To Karin in Ann Arbor, MI I would like to comunicate with you more about your migranes. My daughter is a student there and goes to MHNI. We think it is wonderful. Thanks.
Karen <Kbout78971@aol.com>
USA - Date: 01/17/99 (Sun) Time: 04:25:53 PM
I am 40 yrs old and have had migranes for 23 years. My migranes appear 3 or 4 times a year and are full blown. My doctor and I beleive that a migrane attack caused a heart attack I suffered when I was 36. I am healthy otherwise and have no history of heart problems in my family. The past several years, my migranes have been appearing much more frequently, but are controlled effectively by Imitrex. After many years of trying to figure out the cause of theses attacks, I have determined that high pressure weather systems are definitly the main cause. I would appreciate hearing from anyone who has similar symtoms and have found successful treatments.
Gary Steffler <gsteffler@midwcom.com>
Canada - Date: 01/17/99 (Sun) Time: 04:01:50 PM
***Sandy*** Hi I was on Paxil for a short while for migraines, it did not help me but it did as did several others along the same med line cause them to worsen....within a half hour of taking a pill I would have a throbbing headache....Needless to say I didn't stay on them long. Best of Luck Sabrina
Sabrina
USA - Date: 01/17/99 (Sun) Time: 03:00:29 PM
Hello all!! The stress of this last week has finally caught up with me. I felt the beginnings of an attack last nite and awoke with a full-fledged migraine. The sad thing is that I have only one Zomig left and even if they worked I'd still be up a creek w/o a paddle. To top it off moms is making homemade stew and the aroma is killing me (very unusual as I ADORE the stuff normally)! I am at the point where I wish that my head would simply fall off and I could lay down and die. But realistically I know this won't happen, so I am headed to take a steaming bath and dope myself up with my old codiene pills and head back to bed to burrow under the covers and hide from all light, sound and smells. God bless you all for listening to me vent my pain and frustration. Peace & love.
Emily <ekm310@aol.com>
Lawton, OK USA - Date: 01/17/99 (Sun) Time: 02:14:25 PM
Hello All!! I am new to this forum but unfortunately not new to migranes. I am 30 and got my first one at 13 years old. I didn't know at that time what it was but now thinking back it was a typical migrane headache. I get the impaired vision--I lose most of my perpherial vision--see the "heat waves", bright lights ect ect. I get extreme pain behind my eyes (usually one side is worse)- nausated--I am sure you most know the story. My headaches went away for several years after my son was born (he is 9 now) but they have come back with a vengence. I take Excedrin basically around the clock--sometimes (as of recently) the headaches are just an annoyance--I mean the pain is there but it is not as "unbearable" as a regular migrane headache. Does anyone wake up nearly every day with a headache? My scalp also gets very sore just to touch in certain spots--I haven't talked to anyone else who experiences this but am very curious to know it anyone does?? I get the sharp pains in my head-which I swear sometimes is an anurysm gonna break lose but it happens so often that I guess if it was it would of blown by now! :) I try to keep a positive outlook but these everyday headaches really can get you down--anyone else experience this?? Tracy
Tracy <smalltowngirlusa@yahoo.com>
MI USA - Date: 01/17/99 (Sun) Time: 01:49:29 PM
Hello Friends!

To Barb: My comments were also not directed to you but to those who were either complaining or making fun of you. I apologize if it seemed any other way!

Ok for the question about EXCEDRIN MIGRAINE: it is EXACTLY the same except for the package inserts. They contain info (very little) about cause & effect of Migraine pain. Don't spend the extra money. You can get the same HEADACHE formula at Target or Walmart. Same stuff less money... ALWAYS a good deal. Sometimes the store brands give you an extra bottle (100% MORE free) for the same price. There is no difference in the ingredients. I have found that if I take a furinol tab with an 800mg tab of Ibuprofen it works better. Guess its trial & error.

To those with Kiddies suffering: I know you feel like your hands are tied. I know parents always want to take away the pain for the little ones, mine always tried to distract me... Didn't work! Keep your chin up & just help them suffer thru it.

I'll keep you all in my prayers. Do the same for me OK? Take care of yourselves & each other. We need to be there for everyone. God/dess bless,~Dianna~

PS: I saw this bumper sticker today: We are all Dysfunctional.... Now get over it! It gave me a good chuckle! (((((HUGS)))))
Dianna <ghost@gte.net>
Norwich (for now), Ct USA - Date: 01/17/99 (Sun) Time: 12:28:28 PM


Hi everyone, Just wanted some help or info. My Dr, put me one Paxil Monday for depression. Today is Sunday and up until the time I took the Paxil I had had 2 migraines in 14 days which was excellent for me. Well since I started taking the Paxil I have had a migraine every other day and the one the day before yesterday could not be controlled by meds for hours. My question is has any one had a similar situation or has any one had any luck taking Paxil. Thanks for your response. Sandy
Sandy <Sandj71>
NY USA - Date: 01/17/99 (Sun) Time: 12:18:46 PM
I don't post here often and it has been a couple of months since I visited the journal. I am a daily sufferer of migraine for 26 years, but since July of 1998 have been blessed with the proper medical treatment from the right Pain Specialist so that my daily pain is controllable. Enough so that I can work and function almost normally again. I have in effect been given my life back for the most part. I still get the occassional breakthrough pain that doesn't seem to respond to the medication, but this is the excpetion now rather than the rule. I want to apologize beforehand to those this entry is likely to offend. It is not my intent to offend anyone, but there will likely be some offended. It is my intent to give hope to those of you who feel so hopeless; like I did for many years. I grow weary when I read the entries in the journal of those who are still being mistreated by the medical community. Being treated like addicts and hypochondriacs (sic). To those whose entries tell of preventive meds that seem to help but whose entries continue to grace these pages of the journal with horror stories of pain and suffering. And yet others who talk about magnets and crystals, herbs and hypnosis as well as acupuncture - but still their cries of pain ring true. The many clinics we have been to and the incredible number of treatments, tests and seemingly infinite medications we have endured and yet we still suffer. The fears of addiction haunt many of us, but the reality of pain rules our lives. The ended careers, the lost jobs, the educations ended, the families destroyed because the days of our lives spent being spent shut in a dark room, our heads packed in ice seeking solace from noise, movement and odors. Because too much of any of these will send us hovered over the toilet with gut wrenching and head splitting convulsions of the stomach - dry heaving until our stomach muscles tighten in pain. I find myself sympathizing with those who still take expensive injections of imitrex or DHE 45 and still have 2-3 debilitating migraines a week. And yet others who swallow numerous pills that prevent attacks but the attacks still render them helpless. The millions of dollars a year we spend on clinics, emergency rooms, hospital stays and doctor hopping trying to find the magic bullet and yet the pages of the jounral are full every day. When does all this end? Is death the only final feedom or is it true that most of us will stop getting migraines at age 55 or 60? I don't know about you but I still have 20 years to go before I get there. There is hope for those who dare to do what our doctors would have us think is foolish. Most doctors would never agree that taking high doses of narcotic pain relievers would be the right thing to do. Most of them barely give you enough if any pain relief meds to even take the edge off a severe migraine. Thank God there is someone willing to help chronic pain sufferers like most of you. He is the man who gave me my life back and he can help you too. He is a controversial doctor who risked everything for people like us. People who had been given up on by the medical community. He wants to help us and he knows how to do it. His name is William Hurwitz. He is the one that the DEA took his license away for prescribing large quantities of opiates to his chronic pain patients. His practice is in McLean, Virginia. Now that his license has been reinstated he is helping people like us again. The DEA lost their battle against him. They not only had to admit they were wrong, but the legal battle also revealed that Dr. Hurwitz was doing exactly what he needed to do to help chronic pain patients get proper control of their pain. If you too are tired of everthing I have mentioned in this posting and you are really ready to get the help you need give this man a call or send him an e-mail. You will not be sorry. He is the most compassionate doctor I have ever known. He will help you get your life back. You won't have to spend most of your life in the bedroom isolated from your families and your jobs and the rest of the world. You can rejoin humanity and become a productive member of society again. I take between 900-1200 mgs. of morphine every day. My pain is controlled and believe it or not I am not sedated. I drive to work every day and I do the things in life I enjoy doing again. Taking my Dad fishing, my daughter to amusement parks to ride roller coasters and my wife to concerts and plays. Things I never dreamed would ever be possible again until I met Dr. Hurwitz. You can get your life back by calling Dr. Hurwitz at (703) 790-8007 or by emailing him at drbill@drhurwitz.com Make the call and live again! Rhonda - I apologize for taking up so much space. I apologize if I offended anyone. I hope some of you are helped by this posting. If only one person reaches out and gains their freedom I will be satisfied. I would pray many more than one will be freed from their daily suffering. Best wishes to all of you. E-mail me if you have questions or want to comment. If you want to speak to me I will e-mail you back with my phone number. csraine@ibm.net
Chuck Raines <csraine@ibm.net>
Redisville, NC USA - Date: 01/17/99 (Sun) Time: 12:08:57 PM
Thanks, Karen in Grand Rapids (GrandKaren??). I guess I'll be K2 to avoid confusion. (Ann Arbor is called A squared or A2 by locals.) Your daughter is lucky to be seeing one of the top headache specialists at Michigan Headache and Neurological Institute. Their website is www.MHNI.com and Dr. Saper's is JRSaper@aol.com. I don't see them anymore, because they're outside my insurance network now. Martha and Kristine- Sleep causes some of my migraines. Would you say sleep is not restorative and you dread the bed? REM sleep can trigger migraines. Also, I don't move all night and that causes muscle tension and splinting. Any irregularity in your sleep schedule can trigger. Getting up the exact same time every morning, no matter what time you went to bed, seems to be the most important part--no sleeping in. No naps either (supposedly you go right to REM). I found Wellbutrin helpful--not in the way they expected, ie better sleep, but it made me sleep lighter. Is it this way for you?: You sleep like a rock and don't move? I even use a clock that rings our the passage of time. I also use a quiet, electronic kitchen timer--just like in the kitchen, it's time to flip it over. The doctors look at me like I'm crazy when I say how thrilled I am that Wellbutrin makes me sleep more lightly. Michelle- It sounds like you ARE all alone out there. Especially if there is only one doctor. My best doctor says, "If it were me, I would ....whatever." That really builds my confidence. Maybe you could turn this on its head and ask your doc, "What would you do if you were (in my position? or whatever). And put some kind of time limit on treatments, like "How long before we can expect to see results?". Get clear time limits on everything--you'll feel a lot better if it's not open-ended, as to when "the doctor wants to see you again," what you're supposed to do if the medicine doesn't work, what the next step will be, etc. Your doctor is being very insensitive (not uncommon) and you are naturally extremely sensitized when you go for an appointment. Look at the state we have to whip ourselves into to go see the doctor. I know I don't want to get back in by body and examime just exactly how it feels. I spend a lot of time and work really hard just to NOT be in there! And it's very depressing. I may be edgy, touchy, snappy--or I may be on the verge of tears. Or I may be experiencing doubts about my "illness, especially if I'm having a good spell--Why am I even AT the doctor's? And my main weapons against pain are distraction and labor. Put me in a dimly lit, totally boring little room, under an annoying fluorescent light bulb, and "the doctor will be in to see you shortly." Hey, that's not short enuf!! Your doctor was patronizing and rude--shake it off. Don't get hurt, get assertive. Berta- Did you refuse the spinal tap? They shouldn't hold it against you. What a way to prove you're willing to work with them! Probably trying to rule out meningitis-bacterial infection in head/spine. I looked into it and refused--they didn't bat an eye. If you did get it, how bad was it after? Do the glands in your neck, back of your head, or around the front of your ears get hard, and very painful like mine? Anyone else thrilled that Christmas is over? Except for the lights. There's some evidence that those little pink lights, blinking randomly, can give some migraine relief to some women. Some story, huh?
K2
Ann Arbor, MI. USA - Date: 01/17/99 (Sun) Time: 12:02:16 PM
Does anyone else have differing patterns of onset of light flashes and pain with their migraines? It makes it difficult to treat, sneaks up on me. Just wondering. Thanks for being there, thanks Ronda for the wonderful forum.
Brenda Martin <petsgalore@WebTV.net>
Dallas, Tx USA - Date: 01/17/99 (Sun) Time: 02:21:36 AM
I said I got migraines 2 or 3 times a week i meant to say a MONTH, thanks dalliss
dalliss johnson <dallissJ@aol.com>
east ridge, tn USA - Date: 01/17/99 (Sun) Time: 12:32:39 AM
I am having trouble getting drugs for my severe migraines, I usually get them on an average of 2 to 3 times a week and the only drugs i have found that work are, stadol by injection or nasal spray or demeral, what is the problem and how do i keep getting the drugs i need and why must we suffer when there are drugs and other things we can do?, I 'm new to this area but I am willing to learn because I feel like people are doubting me and my dr. is getting too scared or something to give me the meds i need, thanks dalliss please e mail me at dallisj @aol.com thanks
dalliss johnson <dallissj@aol.com>
east ridge, tn USA - Date: 01/17/99 (Sun) Time: 12:06:52 AM

 


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