Case Histories - May 1998 #3

I have found your site wonderful. I am just wondering if anyone else has my problem. I have been suffering from migraines since I was 8 (25 years now). I have tried virtually everything for them: Imitrex, Inderal, Caffergot, Sandomigrane, Fironial, Percoden, Elavil, Bellergal, Talwin and every O.T.C. preparation available to man-kind. My problem is that I suffer from severe asthma also so I can't take anything with aspirn in it. (This is a BIG problem, since most migraine medications contain aspirin) The only thing that works is to get an injection of Demerol. I suffer from these migraines usually about 1x/week (with regualr headaches in between) and for obvious reasons I can't get injections each time. I am just curious as to whether or not anyone has any suggestions on what a person who can't take aspirn can take for migraines. These migraines tend to keep me home at least 1x/month. I feel that if there was something I could take when needed it would make a HUGE difference. Thank you for any information you can give me. Lisa

---Lisa
Victoria, BC Canada -

I sort of came across this website accidentally while I was doing some internet research on Vicoden here at work. I must say, I am glad that I did, as I find this to be a fantastic website. I, like the rest of you, suffer from migraine headaches. I vividly remember the first one I ever had. It happened while I was in the 7th grade (I am 26 now) during a hockey game in which I was playing. What started out as a fun way to spend time with friends after school ended up being the beginning of my migraine misery. That day 14 years ago was the first time I ever experienced the throbbing, intense, nausea-causing pain deeply rooted in one of my temples. It wasn't until I was 18 that I was officially diagnosed as a migraine sufferer. To this day, I still suffer from migraine headaches, but fortunately I now know how to minimize the chances of one occuring. For myself, there are 2 main factors that almost always trigger a migraine: Sudden changes in my sleep pattern, and alcohol. Because of these factors, I can sort of relate to something that was posted on this website by a fellow migraine sufferer. That is, migraines, to a degree, force you to become "boring." Perhaps boring isn't the best choice of words here. I think a better way of putting it is that migraines have forced me, and many others, to become a very schedule-oriented, somewhat rigid person. I almost always go to bed at the same time every night, and I stopped drinking (I never drank heavily, just recreationally. But just 2 or 3 drinks were more than enough to trigger a massive migraine the following night). Anytime I either stay out late, drink, or wake up later than usual (after 8:30am), I run the severe risk of triggering a migraine. Up until I was about 19 or so, I had no idea what was the cause of these horrible headaches. I thought it was just a random thing that would occur maybe once every 3 or 4 months, so I was resigned to the fact that I was simply at their mercy. But once I started to keep track of the headaches and my activities (My father advised me to do so) on the days on which one would be triggered, I finally put 2 and 2 together. Since putting 2 and 2 together, I have really beeen able to minimize incidents of migraines ocurring. For any migraine sufferer, this is THE key with regarding to coping with these headaches. Each individual sufferer has to determine for him or herself what triggers these debilitating headaches. Once this is achieved by means of keeping some sort of log or record of daily activities, the battle against migraines becomes a lot more managable. Along with each individual determining for him or herself what triggers migraines (the factors that trigger migraines vary greatly, and probably aren't the same in any 2 individuals), there are prescription & over the counter medications that can really help as well. For me (again, this is an individual thing), I simply take 1 Imitrex (either orally or nasally) along with 2 extra strength Excedrins. I then close my eyes while laying down in a dark, quiet room, and 30 minutes later I'm virtually 100% recovered (although I spend the rest of that day/night walking on eggshells, so to say). I highly recommend this combination of drugs for any migraine sufferers who have yet to find the most effective drug/drugs. Imitrex is prescription only (Thank goodness my father is a physician!!), so consult with your doctor for more information. I wish all of you the best of luck. Email me if you have any questions or just want someone with whom you can talk.

---Andrew Fiedelman <SonOfZombo@aol.com>
NY, NY 10028 -

Hello all !!!!!! After reading most of these testimonials I have an Idea. Why dont we gather information about physicians who are sympathetic to this disease , I am not talking about a list of physicians who just prescibe drugs , I am talking about PEOPLE LIKE YOU AND I that understand maybe from a personal perspective ! Doctors who have gone through the pain and agony . People please tell me what you think, I am willing to do the leg work if you folks will provide the doctors names (they will be kept secret) . What do you think ? let me know . Steve O.

---Steve O'Donnell <steveo@slc.quik.com>
Salt Lake City, Ut USA -

I am new to the net, and I think I sent my history directly to Ronda instead of this journal, so Ronda, if this sounds familiar, it's me. I have had auras since I was 15, but never experienced any pain until about 4 years ago (age 39). I have a mitral valve prolapse, and have been taking Inderal 40 mg 3X a day since then for that condition, and this may have kept the pain at bay until relatively recently. Anyway I have severe migraines 1-3 X per week. They last 1 or 2 days. I also take 125 mg Elavil at night. I have also had the weight gain from the Elavil as some of you have. I really don't know if these preventative meds work or not since I was taking them before I developed migraines. I have also tried Imatrix by spray & pill, but this causes my heart to race and skip beats. I have been on Ultram, Midrin, Lortabs, Toradol, and Stadol for the acute pain episodes. The only thing that has worked is Stadol. Demoral won't even touch it. I have also been treated poorly at the ER, and I refuse to go to one hospital even though it is the closest. The last time I was there, the doc on call refused to give me anything but Toradol, so I walked out without anything for pain. Boy was I angry & sick! But I do have a family doc who allows me 1 bottle of Stadol a week. The bottle contains enough medicine for 8-10 sprays, and it usually takes about 4 for really bad headaches. This med is expensive, but insurance pays most of the $72.00 cost. For those of you who worry about addiction, it has been my experience that when I use it I feel no euphoria, and do not have any cravings. As a recovering alcoholic, I have to be very careful of any mood-altering substances. When I was in rehab, I was lucky to have an addiction specialist on staff, (an MD who also had a degree in Pharmacy), who did not insist that I give up Stadol. It was her opinion that since my drug of choice was alcohol, and I didn't get a "buzz" from Stadol, it was safe as long as it was strictly regulated by my family doc. I also had a serious illness last year in which I was hospitalized for nearly a month on a morphine drip. I thought I may get addicted, but didn't have any trouble when it was discontinued. Both my doctor and I are comfortable with my present use of the Stadol. I am willing to try anything else, but so far nothing else works. I would welcome any replies from fellow sufferers, and thank you all for the support.

---Mary J. <mdaniels@ncn.net>
USA -

I have had headaches for over 20 years now. I have tried the whole goround with drugs for treatment and prevention. As fo right now, I am taking Nortriptyline for prevention and use lortab plus and stadal for pain. Neither one is working very well. All the doctors I have seen in my area are afraid to prescribe more. They don't understand what a migraine is like. I also have to deal with military insurance. It is like pulling teeth to get a referral to see a specialist. I am now waiting to see a neurologist. Does any one know of a headache clinic or a good doctor in my area? I have tried the diets, exercise, relaxation you name it. These do not work. I am not sure what medicines to try or to mention to my doctor about. I have 4 children at home one of which is a 2 month old who I am nursing. That also limits what I can do. The ER's around here treat me like an addict. What they don't realize is I only go in when I cannot stand the pain any longer. Then they wnat to give me something that has proved it doesn't work. Most doctors I have found do not like the fact that we know more about meds than they do. It hurts their pride. If anyone knows of a good clinic or doctor inbetween Atlanta and Birmingham (I live right between them) please let me know. I would be interested to talk with someone who understands my problems. Hope you all have better luck than I do.

---Stephanie Lycan <LycanJS@aol.com>
Ft McClellan, AL USA -

TO all fellow sufferers fight the good fight. I have had migraines since I was 8 yrs old. Over the years I graduated to stronger and stronger over the counter meds. I have read many books and articles and I tried to find a trigger by keeping a headache diary. I joined the Air Force at 19 years of age. The migraines ave greatly accelerated over the last 2 years. I had to start seeking a doctors help when I was 20 because the headaches were so incapacitating. I have started having siezures in the last year and with every headache my bloodpressure shoots up to 200/150. I am terrified of having a stroke. I saw a Air Force neurologist and he diagnosed me with hemiplegic migraines. I have had the battery of tests, all normal. I have run the gamut of meds: prophylactic, abortive, anti-depressants, barbituates,vasoconstrictors, blood pressure, siezure, you name it I have probably had it. All have either not helped at all, aggravated, or worked for a little while and then not at all. Right now I have to go and get a shot of some really strong pain med and hope that it knocks me out for a long time. I have a new neurologist now who I see about every two weeks to tell him this is'nt working lets try another med. He is very nice but this is also a military medical system. Which means it is run like an Hmo. Over the years I have learned all the self-relaxation techniques, massage therapy, aromatherapy, relaxing music,I know all the things to do to relax myself the most. I know this is the only reason I have not committed suicide. Sometimes still I wish I could call Dr Kevorkian. But like all fellow sufferers through the pain I have learned to be tough and live life as much as I can between the headaches. Sometimes I know when the headache is coming and sometimes I don't. When it comes though it sweeps over me and leaves me in it's wake,devastated physically, emotionally, and mentally. IT is always on the right side, the pain grows and grows threatening to crush in my skull, my vision goes, I vomit violently, and I have siezures that cause the right side of my face to clinch and unclinch, my arm curls in on itself, and my hand becomes a rigid claw, shaking and jerking uncontrollably. Currently I am going through a med board that may discharge me from the Air Force(praying it will) because I cannot function as a military member. I am a Serb-croatian linguist and my job is very mentally challenging. I am sure you can only imaging the havoc the migraines wreak with this scenario. A few of the Sergeants and Officers over me are very supportive but the majority are rather skeptical believing that I must be faking to gain a discharge. I would do anything to be just faking, I love my job and I love what I do. I work for NSA and there are'nt a whole hell of a lot of 22 year olds who have achieved this. I am afraid of what will happen after I exit the Air Force I won't have any disability and how can I hold a job when I never know when I will be devastated by another episode. Meanwhile I am wondering if there is anyone who knows of a good neurologist at John Hopkins. I don't want to start out cold again to find a good neurologist. Also does anyone know a good Headache clinic in my area? I am hoping that maybe a civilian doctor can help me out a little more than the military has. After reading most of your entries I am rather doubtful of that though. I am so happy to find a group of fellow people who know exactly what this is like and how life wrecking this is. To all of you parents out there, I am not one yet and I can only admire you and your strength because I have no clue what I would do if I had a child to care for during one of these episodes. I met and married a wonderful supportive man who even while we were dating would care for me, holding me over the toilet vomiting, put me in the tub, massage my head, and carry me into the doctor, tell them what needed to be done and hold me through all my terrifying drug induced nightmares. I hope and pray that someday they find a source and cure for these things. I don't believe that the general public is aware that this is as debilitating as say cancer, or any other serious disease. I know this to be true because the reaction I get from most people is oh a headache. Also the disability ratings for us are rather stupid too I think. Well I have written long enough so must go. But I hope to hear from some of you and I offer my encouragement to each and every one of you. Thanks so much for this place to vent and share. Marie Toth

---marie toth <srcemojje@webtv.net>
baltimore, md USA -