Journal of Migraine Sufferers




My 17 yr history was just erased. I will re enter at another time. I too have suffered at the hands of insensitive ER nurses and doctors and others as well. My children are age 17,16 and my son is 9. My daughters and my husband have reached a no tolerance or little tolerance level. It's so hard to see the disappointment on everyone's face when plans are broken because mom has another migraine! Like anyone would ask for this? I've done the beta-blockers, calicium channel blockers, anti depressants, depakote, neurontin etc. Nothing works or the side effects were hideous. They found ischemic plaques on my MRI, indicating some bleeding going on, so I can't take any vaso constricting drugs. I was hospitalized at Faulker Headache Center in Boston in 1988 (?) they literally almosted killed me with the DHE protocol. I have to be careful with pain meds, because of the rebound effect. Now they are suggesting Lupron to shut down my menstrual cycle. Has anyone had any experience with this? I see my OB/GYN in a week, to discuss this. I am a clinical social worker, that can not work because these migraines have been so debilitating. I too have to be knocked out with strong shots of dilaudid, vistiril & ativan. It just helps me sleep, hopefully! If anyone has any questions about my experience, or can offer any suggestions, please e-mail me at: MLTashjian@Juno.com Good luck to all! Sincerely, Maureen Tashjian
Maureen Lyons Tashjian <MLTashjian@Juno.com>
Lanhorne, PA USA - Mon Jun 15 3:40:17 1998
Iam 41 yr old female, suffering with migraines for 17yrs, after the birth of my first daughter. They have gotten progressively worse as I get older since they are so hormonally linked. I have tried ever thing from beta blockers, calicium channel blockers, anti depressants etc. I was even hospitalized at Faulker Migraine Clinic in Boston, they did the DHE protocol and literally almost killed me. I since learned I can't tolerate or shouldn't take any vasoconstrictors because my MRI showed some ischemic placques (white matter) in my brain, which indicates there is probably some bleeding going on. Over the last 6 mos my migraines are worse, I've had several status migraines that lasted 10-12days. I now get several migraines a week, depending on where I am in my cycle and that is getting less and less predictable. I have 2 teenage daughters, and a 9yr old son. The girls and my husband have little tolerance any more. I get them worse at night. I been though the rebound problems with pain meds, and really have to be careful with them. I have also been to Johns Hopkins Pain Clinic, with the exception of getting me off all meds, it was a bust. I too experience the compassion of the ER nurses and doctors. When my head gets that bad, light, noise sensitive, aura, vomiting etc. the only thing that helps is to get knocked out so I can sleep. Normally it takes enough Dilaudid, Vistiril & Ativan to kill and elephant, but that's what it takes. I am a clinical social worker, who can not work at this time because of all the headaches and there unpredictablity. I hate that we can't plan anything and count on doing it. I hate the look of disappointment in everyone's faces. Like we really asked to suffer from such a hideous disease. Please feel free to e-mail me with suggestions, questions about my experience etc. I would love to hear from anyone, especially those most effected by hormonal migraines. The latest suggestion is to take Lupron and see if shutting down my menstral cycle will do the trick. Anyone had any experience with this? Sincerely, Maureen Tashjian e-mail: MLTashjian@juno.com
Maureen Lyons Tashjian <MLTashjian@Juno.com>
Langhorne, PA USA - Mon Jun 15 3:23:17 1998
My migraines started in 1974, a few months after the birth of my youngest child. My first migraine paralyzed me; I couldn't move or speak. The only responses my body allowed was blinking and breathing. I was terrified. From that time on I have had severe migraines. I have had the entire spectrum of medical tests and medications in the years that have followed. My doctors even told me that by upper teeth, which had a couple cavities, were the culprit. I had all of them pulled and got a false plate. Next, my hair was down to my waist and a doctor said the weight of my hair caused my pain, so I got it cut off. Niether of these foolish things eased my pain. I have had as many as 4 migraines a week, and as little as 1 a week. In the past years I have learned why Picasso painted the way he did. His pictures look like some of the auras I get before a headache hits. I have thought that I was going crazy several times in my life. While hurting, I would consider putting a rope around my neck and tying it to the bar in the closet. I didn't want to die, just pull the muscles and nerves in my neck and head to try to ease the pain. I have had many, many of these thoughts; thank God I never acted on them. The ideas now sound crazy, but while I was hurting they sounded like logical remedies to my pain. I have tried all the medicines on the market for migraines, Cafergot, Inderol, Imitrex, etc. but none of them would make a dent in the severity of pain I was suffering with. I am trying Zomig 2.5 now. My doctor asked me what I needed for the pain and I told her "Morphine". She just laughed. I then said "Demerol" and she also laughed. She doesn't understand. I am not a drug addict!!! just a person in severe pain. I do not take my pills regularly. I am afraid that my body will get used to them, then when I really need them they won't work. I told my doctor this, but she still won't give me what works. I have to pay a hospital bill to get a shot. I wish the drug developers would work as hard on finding a cure for migraines as they have for men's sexual problems. Viagra is now available, why can't we have a medicine that works too????????? Sherry Beeson Thorne rts@dixie-net.com
Sharine Beeson Thorne <rts@dixie-net.com>
Tupelo, MS USA - Sun Jun 14 19:49:16 1998
I was surprised to find so many other people out there who suffer from migraines as well. The headaches started about 15 years ago and seem to be caused by stress, scents, sudden head movements (amusement rides) and extremely bright lights. At first they weren't to bad. I could control them by taking a decongestant and tylonel and lay down. Once I was able to go to sleep, the headache would go away. The problem was going to sleep. One year, I had been battling a sinus infection for 5-6 months and the family doctor kept telling that it would go away. It never did. Apparently it turned into meningitis. CREATING the worst headache I ever had. I was in the emergency room two days in a row. The ER doctor is the one who finally figured it out. After the spinal tap, the pain in my head disappeared (for a while any way). I haven't had a headache as bad as that since. Like some you, I had sinus surgery for a deviated septum, the doctors told me that this was the cause of the migraines. WRONG!!!! Not even two weeks after the surgery the headaches were back! Eventually the ENT sent me to a neurologist (I was beginning to wonder if I didn't need to see a psychiatrist). My neurologist worked with me for several months until we found a combination that worked for me. I now only take Midrin when the headache hits. I have changed jobs a few times until I have found one that doesn't create the amount of stress that triggers the headaches. I avoid certain scents and don't ride the rides that whip my head around.
Laura Moore <lmoore@vialoggroup.com>
Culpeper, VA USA - Sun Jun 14 7:14:02 1998
This is my first time visiting this site. I'm fourteen and have been suffering from migraines for about three years. I hate what these migraines are doing to my life. I don't know what I'm going to do now that I'm switching from middle school to high school. The school nurse refuses to give me any thing to knock the pain out and it's difficult to call anyone to go home. I'm thankfull to my school's assistant principal. This year my mom had to come to the school and complain to the nurse and assistant principal for not giving me any pain killers during a three day school trip. During this trip to Florida, on the way home I felt like I was going to die. This happened to be my worse migraine and I had to go the ER for Demerol and Compazine shots. This incident ruined my spring break-just another example of how my headaches are ruining my life. MY headaches are the cause of much embarrasement in the classroom, too. The nausea makes me puke constantly for periods of about ten min. I got sent to the pricipals office a weeks before school ended and barfed in her office withe a migraine. Sorry to take up so much space, but this journel helps to vent my anger and to share my embarrasment.
Pat
Columbia, SC USA - Sun Jun 14 1:17:34 1998
I had migraines now since 1982....need help just write to me will do my best to help u "guys"....i realy dont need to tell u what i go through...u all know it....but i am receiving a permanent pension after working for Social Service since 1982 to 94....Later .Take care Marthe
Marthe <marthe1@hotmail.com>
CANADA, USA - Sat Jun 13 19:46:18 1998
Hello fellow sufferers.... I have been having migraines for 10 years now. My doctor just put me on hormone replacement pills last week. The headaches have seemed to get worse. My doctor doesn't want me to use tylenol, motrin, or any type of real pain killers.. What really works for me is demerol and fiorinal. But how do I get these? We are in the military and can't go to an outside doctor, I've tried doing that. I am also not allowed to go to a pain clinic. I went to a neurologist about 4 weeks ago. He basically told me to suffer with them until they go away. He's the one the suggested I go on hormone pills. Anyway, I have read some of the other people's journals, I have also found that generic does not work as well. I have also gotten the numbness on one side of my body. I have had MRI's, CAT scans, etc. and they found nothing. I also get the light sesitivity, feel sick to my stomach, flashing lights, trailing lights......... Please don't tell me to try Imitrex, been there done that. Any suggestions????? Please help if you can. Thank you, Laurie
Laurie <shipmate81@aol.com>
Allyn, WA USA - Sat Jun 13 4:33:59 1998

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