Journal of Migraine Sufferers



I wonder if anybody can help me. For as long as I can remember I have suffered from very regular dizziness & billious attacks. I am a 57 year old male. I have had numerous hospital tests over the years and it has been diagnosed as basilar migraine. The main difficulty is that whenever I read or hear about migraine it refers to a headache but I rarely get a headache. Is it possible to have migraine without sufferring from an actual headache. The form of my attacks has changed over the years. Ususually they strike in a morning and can 3 or 4 in a week. This week I have had 2. I have tried various drugs over the years together with Homeopothy,Hypnotherapy and Acapuncture. I have found the best remedy is to go home from the office and have a lie down in bed for half an hour. I am then OK until the next time. In addition to dizziness I suffer from slurred speech and have difficulty on writing. My son & daughter also suffer from similer attacks but to a lesser degree. If any user of this WebSite has a similer experience and can offer any help I shall be most greatful. A few years ago I had an EEG and the consultant diagnosed epilepsy and I know it is not. I have never lost consciousness even for a second. Many thanks
Michael A Ashton <MAshton289@aol.com>
Cumbria UK - Date: 09/30/98 (Wed) Time: 05:27:15 PM
HI, I've had serious migraines since i was 5 and would occur about once a month. I would go into a dark room and my mother would bring me a vomit bag because i could never make it to the bathroom. After vomiting a felt better but it wouldnt last, the pain was so severe I would pull on my hair and bang my head on the walls crying and vomiting about three more times. I generaly had a temperature of about 102 during an attack I think. I was so sensative to light, smells, and especially noise. When I would wake up i didn't know usually dusk or dawn I didn't know if it was morning or night and if I had to get ready for school and play catch-up on missing the day before. But i felt soo goood the pain was gone and no sign of it untill the next-time. This disease has ruined many of my family plans as a child including vacations and special outings. I thank God my family was so understanding or just accepted that something was truly wrong. Although most people have no idea about the migraine pain I have never wished it on anybody including the people who thought it was fake. Now the pain is worse. I am trying to get disabilty through work medical bills and medication add up. The pain is REAL and sometimes i wish I would just die to keep from getting the dailey attacks.(worry about a stroke) My daughter is now 15 and has migraines I pray to God there not like mine. Well anyway thanks for letting me put my message out there makes me feel I'm not the only one out there. Oh and one more thing that is different now is after the migraine I dont feel great any more, I feel exhausted and run down like a headache hangover. Goodluck fellow suffers and keep your head up(lol) I believe the doctors are getting alot closer to cures at least in some of us.
EDDIE
USA - Date: 09/30/98 (Wed) Time: 01:30:31 PM
Hi everyone I just need to complain a little bit and since you fellow migraineurs are really the only people that can understand this frustrating problem I will vent to you. Just a brief history I've had these stupid things since the age of 3. They have only gotten worse over the years not better. I am now going on my 5th week straight with this stupid migraine. I've been to the Dr. the ER taken my prevenative medicines and my at home paid meds, and still nothing has been able to relieve this particular migraine. Actually right now I am afraid to contact my doctor as he will probably once again put me in the hospital. In reading I have seen that a few of you have been given some kind of block ? what is this and how is it done and has is worked ? If this sounds like a probable solution I would like to try it, but need info before I can approach my Dr about it. Also I applaud all of you who have been able to remove yourself from having to take pain meds (narcotics) for your migraines, I tried that one time and spent 2 weeks in the hospital with an uncontrolable migraine, and at the end of the 2 weeks still having the stupid thing and in turn being transfered to the Diamond Headache Clinic in Chicago. Has anyone else ever been there and did they help ? I feel my experience down there was of no benefit at all, I had to wait 2 hours in the waiting room for the doctor running constantly to the restroom to vomit. By the time I saw the Dr my migraine had worsened I was dehydrated, my veins collapsed (so no IV), and my blood pressure was so low I was amazed I was breathing. Back to my current 5 week migraine, I would like to know if anyone else ever gets these and they just go on and on and on. I am so fed up with talking to pain specialists, neurologists, and Dr. and the only thing I ever hear is that we cant give you a stromger dose of this or we cant give you that. I am not able to take Imitrex or any medicines related to it as I had a very bad reaction to it. Why is it possible for a cancer patient to get some sort of at home pain therapy and those of us who have to suffer on a day to day basis and have migraines/headaches almost every day of the year can not. Other than the obvious being an addiction to the narcotics. I personally would take the problem of having to rely on the meds than having a migraine every single day of my life. After 33 years with these things you learn how to cope on a day to day basis in pain, but the quality of life really SUCKS !!!!! Why can doctors not see this. I am sorry for rambling on but I very annoyed with the medical community and the way they treat people with migraines. Oh, heres a good one I go into the ER with a blinding, vomiting, cant walk, sleep or function migraine and they tell my husband to give me 2 aspirins at to put me to bed, she doesn't need a shot of demerol/phenegran it's all in her head. DUH !!!! and for this we pay some moron hundreds of dollars. Anyway I must go now please feel free to email me I would love to hear other stories. MAB
maureen <mbeers@genesys-tech.com>
Sauk City, WI USA - Date: 09/30/98 (Wed) Time: 01:08:22 PM
Thank God for this site! I am a nigraine sufferer of 16 years. I am now 31 and am on the tail end of a 8 day migraine. They are like clock work around my period, and also the worst ones. I have also tried all of the meds mentioned and more; and have also been to countless Dr.s and specialists, chiropractors, acupuncturists... Unfortionately I have developed a huge tolerance to most medications, and after a while they quit working if they work at all to begin with. Luckily I have insurance at the moment, but have been without for years at a time. I have many medical bills that a pay what I can on, but they keep coming-especially the ER visits that insurance doesn't cover. The best and most expensive treatment I have found for the killer ones is: several bags of IV fluids with a combonation of meds into the IV: Nubain, phenergan (or visterril-which is less harmful to the viens), & DHE45. I have had Demerol so many times that it takes a butt load to do the job, plus it's one of the shortest lasting narcotics. IM shots in the muscle don't work as well, plus I have soo much scar tissue back there that it burns like hell and doesn't absorb as well. Demerol is the most common med given, but it really is not good for migraines because of the short term effect. Nubain, stadol, morphine, or a combo is better, and sometimes it takes several injections to completely get rid of the pain; otherwise you might be back the next morning. I am an ex-RN and EMT, so I can give my own shots at home. Oral meds just don't do much for me, and it takes too many of them, plus after a while you get rebound headaches from the narcotics or get hooked on them. If your's aren't as bad as mine, there are oral and nasal meds you can take. The ones that have helped me the most in the past are: Stadol NS ( but don't use it for long, alternate, because you will get rebounds quickly), zomig pills (you can take 10mg a day ( that's 4 pills a day), migranol NS ( make sure you exhale and do not breath through your nose while taking it and for several minutes afterwards or you will get extreme nasal congestion), you should repeat the migranol after 15 minutes, and finish the vial within 8 hours or it looses it's effectiveness. It is easy to learn how to give IM injections in the muscle if the oral and nasal meds don't work for you. The ones that help me are: Tordol (60mg at a time) which can be repeated, you can also give it IV and it works quicker and better and it isn't as expensive as some of the others, also, DHE45 can be given IV (I'm not sure about IM) it can cause some numbness and cold extremities, but that is normal for most all migraine meds. Stadol also can be given IV, but I hate it-I prefer the nasal (the IV has a intense side effect after about 5 minutes and it is not a pleasant feeling-you feel like you are burning up. I have had the cervical nerve blocks done on the back of my neck and/or scalp-the first time an excelent Dr. did it and only made 2 injections in the base of my scalp-he only injected a small amount of medicine, which is the way it should be done (it's a lidocaine & a small amount of steroid cobonation). Last summer after we moved to butt -uck AR. another so called pain speciallist did the injections. He did a series of them (about 5 on each side of my neck and scalp). He injected alot more medicine than is requiered and he did the procedure once a week for 4 weeks. I begin to have muscle spasms from the procedure and I got worse, also it builds up scar tissue around your nerves and becomes ineffective and more harmful. I would only recomend this if nothing else works and if you go to a Dr. that knows what he is doing-my first time left me headache free for 3 straight months-it was great-his name is Dr. Stephen L. Gipson in Memphis,TN (901-767-9500) and he may know Dr.s in your area. The only other meds i know of and have tried that did not work for me but have for others are: Imitrex (pills, NS, & Im shots), maxall, ultram (really helps around minstral times), cafergot, or any of the ergotomines (they are vascular constricters), inderal ( and other blood pressure meds-I don't like these), and an herb that you can buy at K-Mart or some drugstores: it's blue-green algea-I use the Omegea brand that must be ordered, but you can get it much cheaper at the store. Also there is a new drug that is 10 times the strength of morphine without any of the groggy side effects called SNXone11-but it is still inthe experimental stage and is not on the market yet, also a drug that is safe out of Mexico it starts with an M, but I can't remember the name-your Dr. may know. If you have sinus related headaches, I suggest Beconase nasal spray to prevent infection. If you have muscle tenssion HA's try my favorate-Soma (a muscle relaxer-the only good one), or baclofin, scalactin, of flexiril-these are not addicting, but you don't want to use the Soma every day, Baclofin-you take 2 or 3 times a day cause you have to maintain a constant blood level-like an anti-depressant med. The best antidepressents for people with migraines are the SSRI's-they help with the serotonin levels in the brain that we lack, some are: prozac, zoloft,amitriptyline-which is elavil, tofranil-or imipramine, pamelor, & desyrel-or trazodone (can make you sleepy). Anyway I hope this can help someone, and if you have any questions, I can tell you about almost anything to do with migraines, the meds, the alternative approaches, the treatments and procedures, and the prevenitive measures you can take; mostly because I have tried them all, not because of my medical background. There is a very good facility called the National Headache Foundation in Chicago-it used to be the Diamond Clinic, that does research and evaluations and treatments, but it is very expensive. They can give you a lot of info, the # is: 800-843-2256 or www.headaches.org. I hope we can help each other I know how easy it is to give up hope, I've been there more than once, and continue to fight to stay off disability and to search for a cause and a cure. Please write me if any of you hear of any new meds or research or treatments of any kind. I'm to the point where I'm almost ready to try surgery, because I have no quality of life. I love the outdoors and fishing and sports and my pain has robbed me of the things in life that I love. It is very hard to look down the road or even plan for a better career or future at times because of the times when I can barely make it through the day. God bless and don't get too dependent on the pain meds-i've been there and done that and sure it puts a band-aid on the symptoms, but it isn't a cure, only temporary releaf, which I get to the point too where that's good enough for the moment, but we must help find a better way to live and hopefully with less pain. Contact me anytime by e-mail at: lill@ipa.net or by letters Mel 505 Resimont Dr. Russellville, AR. 72801 or by phone 501-970-2274. Good luck just for the next 24. Melanie
MELANIE MUNAL <lill@ipa.net>
RUSSELLVILLE, AR USA - Date: 09/30/98 (Wed) Time: 04:11:59 AM
Hi everyone, My heart goes out to each one of you. It sounds like most of us are living in our own personal hell. I am 24 and have had daily headaches since I can remember, and have been getting migraines for about 9 years. This one I have had since Wednesday night. I called my neurologist, who is very compassionate and understanding, and she gave me Depakote, (Which is like the 29th medication I have tried- and the second time I am trying this one). Most may me very sick, and I am starting to lose faith. I have also tried acupuncture, and special magnets, and pretty much any possible herb or whacky idea anyone offers that might possibly work. I keep wondering if they (migraines) have something to do with allergies- or the change in weather, but every neurologist tells me the same thing- that the migraines are not linked. But nobody can seem to tell me WHY then I seem to get them. Most people think I am a hypochondriac, and I feel terrible for my boyfriend, who sits there and takes care of me when I am throwing up from these mysterious migraines. I think they are not only crippling for the sufferer, but also for the loved ones, but what can you do. At 24, I am very afraid of what damage I am doing to my insides for later down the road. But how else can one deal with the pain? If anyone can offer any encouraging advice, I'd love to hear from you. Thanks, Kim
Kim <KJP25@AOL.COM>
New Lenox, IL USA - Date: 09/29/98 (Tue) Time: 07:07:07 PM

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