Journal of Migraine Sufferers



Hi, everyone.....first I want to thank those of you who have taken the time to respond to my comments here - the positive moral support I have received lately has been a true blessing. Thank all of you. Second, I was reading over a few of the recent positings and my heart goes out to those who, like me, are almost afraid to seek help (i.e. strong medications @ the ER) because of those stupid stereotypes. We are not druggies - I had to laugh when I read the post about the lady who went to the ER after three months to get an injection and was warned of drug abuse. I have said the same words as she did - "A drug addict would not (could not) go three months between "fixes"". Please, what are we - a bunch of idiots? Sorry for venting, I didn't realize how angry this made me until I started typing! :) Anyway, I must go now, but please know that my thoughts are with all of you and my heart goes out to everyone suffering today, tonight and tomorrow - there has to be an end to this.....
Samantha <samandjosh@mindspring.com>
Sunnyvale, CA USA - Date: 01/06/99 (Wed) Time: 11:01:08 PM
Thank you, Bob, for the info. about the Newsweek article. You're right - hopefully, the more people (non-migraineurs) know about migraines, the more they'll understand us. Thanks, Michelle, for letting us know about getting the article on-line. Thank you, RONDA, for fixing the width of the posts on our computer screens! My head is killing me......
Carol C. <rid23153@ride.ri.net>
RI USA - Date: 01/06/99 (Wed) Time: 10:17:25 PM
Fifteen years and about 30 medications later, I have resorted to facet joint injections in my cervical vertebrae. I had it done 3 weeks ago with a follow-up yesterday. I was so hopeful, and maybe I just havn't given it enough time yet, but STILL NO RELIEF!!! Only about $2500 worth of new medical bills to pay. Please don't think I've got a crummy attitude. I try to be the most outgoing person (after all, I'm a Leo - ha, ha) I just hate the pain and do so envy those with a "normal" life! I'm sure you all can relate. I've also endured the "Here she is again - wanting the drugs" visits in the ER. I hardly think anyone in their right mind would classify me as a drug addict while I'm sitting in the waiting room with my frazzled husband, my wound-up 4yr old, and my crying 7month old - thank God for them. They're so understanding and empathetic. I could only wish for all of you to have a supportive family. Anyway, all the while I'm trying not to be embarrassed while as discreetly as possible throwing up in the little bedpan because the bathroom is occupied. Yet I'm just another junkie off the street who decided to skip a day of work to sit in the ER and get a shot in my butt. Gotta love those techs and nurses. The last visit I was berated by the doctor who said "We won't be able to treat you if you come in again. You're showing signs of drug abuse." Excuse me, but my last visit to the hospital was three months ago. Tell me how many addicts go for 3 months between fixes. Needles to say, I had my neurological medical records forwarded to the hospital administrator along with a "nice" letter of "appreciation" for her "splendid" bedside manor. Sorry for going off, but you guys are the only ones who seem to understand. I've been doing the biofeedback, yoga, homeopathic remedies, and trying to learn meditation. It's helping a bit, but I don't think it can take away the true physical hormonal issues, weather changes, and pure hereditary factors that I deal with. I'll give anything a try. Unfortunately, the things that work are fioricet and stadol ns. I limit myself to no more than 5 fioricet per week (to avoid rebounds) and don't use the stadol unless I'm on the verge of going to the ER. -- Kind of that last resort thing. I just wish to have a drug-free, harmonious life where I can enjoy my husband, kids, hobbies, my work, and life in itself. Thanks for listening. If anyone would like to write back feel free. (Also noted that some have had pregnancy-related migraines and are concerned with drug issues during pregnancy and nursing. I've been there too.) Hope everyone will enjoy some pain-free time this year.
Jen <JC72569@aol.com>
Gulfport, MS USA - Date: 01/06/99 (Wed) Time: 08:56:01 PM
This week has been a mixed bag. Earlier in the week, I got a scrip of vicodin filled and got home to discover that it was half empty. When I went back to the pharmacy, the woman at the counter treated me like a liar and an addict. I have been going to that pharmacy for over a year and with the amount of drugs my doctor gives me in his attempt at treatment, I pay her salery. I didn't become confrontational, because i know (from experience) that it will make the situation worse. I explained to her that there had been errors in my last two prescriptions (both times my meds have been given to someone else because of wrong labels), and that I have never caused a problem with narcotics. She looked up my file, and asked me if I had migraines because "I am concerned with the amount of narcotic prescriptans", I pointed out that yes I did have migraines and if she would notice, all of the scrips are from the same doc and that most of them are never refilled. She then for my protection (ha ha) put a note in my file telling the tech to double count everyone of my prescriptions. When she took the bottle back to (begrudgingly) fill the second half of the scrip, she noticed that the warning stickers were not on the bottle-which is her job. She never doulbe checked the scrip and sent it out filled by a tech and not approved by a pharmacist. Oops! No appology, but I did get a five dollar coupon off my next fill. I guess that is as close as one can find in the deamon world of pharmacotics. On a much happier note, I found out today that my textbooks for school can be ordered on tape. That means that I can go back to school and not have to worry about making my headache worse by reading. I am rambling...But thanks for the forum!
Shannan <shanan1023@aol.com>
OR USA - Date: 01/06/99 (Wed) Time: 07:38:08 PM
In July of 1997 my 21-year-old sister went to bed a normal, healthy, active, beautiful young girl. At 3 AM she was awakened by a pain in her head so severe that words can not describe it. She was rushed to the emergency room where doctors, fearing an aneurysm performed a spinal tap and a CAT scan. Both came back normal. In the past 7 months my sister has been to the emergency room 27 times. The headache is never gone. Never. She has seen countless doctors, neurologists, chiropractors, etc. She has been diagnosed with migraines, tension headaches, valley fever, sinus infections, back and neck problems, etc. Every specialist she goes to has a new idea of what is causing the problem. She has been given virtually every migraine medicine available. They have no effect on the pain. None. She has had another 2 spinal taps since that night in July. She has had blood tests. X-rays. CAT scans. MRI's. All come back normal. No one can help her find any relief. She wishes that she could have just one minute where her head didn't hurt. Some days she copes better than others. Then she will have episodes where the pain is so horrible that we have to take her to the hospital so they can give her strong pain medicine. Over the past 7 months she has been prescribed antidepressants, sinus medicine, migraine medicine, and strong pain pills, just to name a few. She tries to fight the pain as much as she can, but her little body is wearing down. She doesn't sleep very well because the pain wakes her up at night. The life that she had before is gone. She has run out of hope that anyone can help her. Each doctor has a new opinion, but all seem perplexed that her headache has never stopped since that night in July or that migraine medication doesn't have any effect. I came across this web site and for the first time felt like there might be people here who understand what a nightmare her life has turned to. And our family's too. To watch her suffer so much is unbearable. I just don't understand why someone can't help her.
Teresa <malot@ablest.com>
Phoenix, AZ USA - Date: 01/06/99 (Wed) Time: 04:26:34 PM
Just wanted to let everyone know that the Newsweek article on migraines can be viewed online at www.newsweek.com (save yourself the cost of buying the magazine!)
Michelle <mgingg@calpoly.edu>
CA USA - Date: 01/06/99 (Wed) Time: 03:52:17 PM
Hi everyone, I have been suffering from this numbness that covers the whole left side of my body. The symptoms come and go but never really disappear, also i feel weak and tired almost every day. Then there's nausea and what you describe as an "AURA". The funny thing is - all that but no headaches (just a little pressure sometimes)! Still my neurologist is convinced that I'm dealing with migraines. Does that make sense to you?
Lucas Muehlenweg <lucas@tough.com>
Los Angeles, CA USA - Date: 01/06/99 (Wed) Time: 01:30:13 PM
I have a killer migraine and I am writing this from work when I should be at home in a dark room in bed! I have been fighting this since Monday night (it's now Wednesday) and my Imitrex isn't kicking it. My mom got the Newsweek with migraine stuff in it, and I'm going to make a copy of the article and give it to my boss. This message isn't even coherent, I'm in so much pain. It's frustrating.
karin <dancethis@iname.com>
CA USA - Date: 01/06/99 (Wed) Time: 01:28:29 PM
*ATTENTION* NEWSWEEK COVER STORY ON MIGRAINES. STORY MOSTLY COVERS STUFF MOST OF US KNOW FIRSTHAND. HOWEVER, THE MORE P.R. OUT IN THE GENERAL POPULATION CONCERNING THE SEVERITY OF MIGRAINES AND THEIR DEBILITATING EFFECTS, THE BETTER OFF FOR US SUFFERERS, THE MIGRAINE RESEARCHERS, OUR LOVED ONES AND OUR EMPOLYERS!
bob
stamford, ct USA - Date: 01/06/99 (Wed) Time: 08:03:11 AM
Hello! Finally I have found others who suffer as I do. I just began suffering from migranes a year ago December 27. I woke up one day and there it was. I have never really had many headaches in my life and I had never had a migrane. It was the worst pain I had ever experienced, I thought my head was going to explode. I know that each and everyone of you know what I am talking about. My migranes come in waves. My first one lasted 2 weeks, then a reprieve with just a daily headache which was tolerable. Then 1 month later another attack, this time much worse. Each time it gets worse then the time before. I lose my ability to speak, hear, I have a hard time walking or seeing. And concentration is almost impossible. This last attack has lasted 4 months. I have had an MRI, Cat scan, blood tests, etc. I have been given Midrin with no help and it caused my ankles and legs to swell up. I have tried amitriptylene, nortriptylene, Migronal, and one other that I cannot remember the name of. I have been told that I am depressed and that is why I have migranes, which is just not true. The migranes have robbed me of my life. I am now on beta blockers, and Ginkgo Biloba with no relief. I do not get the pounding pain, but a constant severe pressure, which covers my whole head. The only thing that gives me any relief is Vicoden, but that has been taken away from me, you know I am a drug addict.....not! But that is what they say, and what am I to do, they basically took away any form of life that I might have. I am married with 3 wonderful boys, and my husband is wonderful too! My husband had read your testimonies before I had, and he did'nt want me to read it. But I am very thankful I did, for now I know that I am not alone.I go to another neurologist tomorrow, and I hope that she truly understands what it feels like to have migranes on a daily basis. I know that I am going on, and on....but it so nice to finally talk with others who experience what I do. About creating a chat room for us, I can do that, and would be very happy to actually chat with all of you! If you are interested please email me: hunamik@nidlink.com. If any of you have any advice, or could help me in anyway I would greatly appreciate it, quite frankly it is a bit scary, and at times, YES, depressing! I am thankful that my relationship with God is strong, and I have His strength to carry me through! Thank you all for listening, my prayers are with, and may God bless all of your lifes richly!
Lajuana <hunamik@nidlink.com>
St. Maries, ID USA - Date: 01/06/99 (Wed) Time: 01:56:45 AM
Hello, This is my first introduction to this journal and I want to thank you all for "sharing". I have been a migraine patient for over 30yrs and empathize with many of you. Lately, it seems the "pressure" in my head just won't go away...it wakes me up almost every morning between 3-4 am, it is at the base of the skull and sometimes tingling in my face. I cannot sleep on my left side because of pressure in my left ear. An ENT specialist and a Gastroenterologist both diagnosed the pain as Gastroesphogealreflux. I have seen a neurologist for years and he is very helpful...currently, Imitrex (orally) is the most helpful. Last year I saw an Oralmaxiollary surgeon and he did confirm a diagnosis of mid-facial migraines...also, stress induced and a familial tendency...my mother had them also, and my daughter suffers with them.He did suggest 20 minutes of aerobic exercises/day, controlled diet, elavil.(started with small doses and worked up to a 30mg/day dose), biofeedback, physical therapy with relaxing exercises and massage therapy. He spent 3 1/2hrs with me and was very helpful and encouraging. It takes time and patience to follow that treatment plan...don't always have that kind of time when working full time with family responsibilities. I would recomend trying some or all of the treatment plan. I discontinued the elavil...it did induce weight gain. I am trying to control my stresses and learn to calm down, the pressure in the neck and ear is just too much! TMJ has been ruled out, but I do sleep with a nightguard. I just read the article in tonight's news about migraines and strokes...a big scare! Thanks for your concern,other suggestions welcome.
geraldine <ger_puccio@yahoo.com>
Schaumburg, IL USA - Date: 01/06/99 (Wed) Time: 12:51:29 AM
Hello Friends,

Welcome to 1999. I hope for all of our sakes that it is a pleasnt one. Guess what? We might get snow in Florida, as south as Pasco county. If it were to rain tonight, we'd have flurries. SO COOL! OK, you can all tell that I've never lived in a cold climate... So sue me! I'm only hoping that the change in weather does not cause a HeadBanger Migraine. I felt one comming on earlier, Hate it when my eye starts to pound & the people at work wonder why only part of my face works. Its kind of embarassing. OH well...

Please be careful if you do as suggested by our unnamed person who gave info on the Mexican Farmicia. Many times the drug you pay for is NOT the drug you get. Just a friendly warning because of some past experience.

Other than that, nothing is new here. Hope you all have a painfree day.. or hour... or even a few minutes of peace. Be well. God/dess bless ~Dianna~
Dianna <ghost@gte.net>
NPR, FL USA - Date: 01/06/99 (Wed) Time: 12:30:01 AM



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