Case Histories - January 1999 #12

Journal of Migraine Sufferers

I hope everyone saw Dateline tonight about migranes if you didn't they have a web site www.dateline.msnbc.com It really explains rebound headaches which it seems alot of people on this journal might be having. Check out the Michigan Head Pain & Neurological Institute there web site is www.mhni.com they are wonderful. Karen Kbout78971@aol.com
Karen <Kbout78971@aol.com>
Grand Rapids, MI USA - Date: 01/18/99 (Mon) Time: 10:28:56 PM

I am 47 years old, type-A personality, love chocolate, and have suffered with migraines for 27 years. I clearly have multiple triggers. I have tried every drug and drug combination on the market except Sansert. It has been recommended by a couple of neuroids but when I read about the potential side effects, it really scares me. (I previously had a liver injury from depakote.....not fun) I would like any advice and counsel from others who may have taken Sansert. I am currently on day #9 of an ongoing migraine episode. My life is pretty packed until Wednesday afternoon....I can go get demerol then. Until then I will continue to eat Imitrex and Fiorinal and just manage to get by. I have such a wonderful life except for being trapped inside this very dysfunctional head. Should I try Sansert or is it too risky? Margaret margaretmorrow@yahoo.com
margaret morrow <margaretmorrow@yahoo.com>
birmingham, ala USA - Date: 01/18/99 (Mon) Time: 10:02:29 PM

CAROLE: Hi, I have to respond here beacuse I am not at home & my friends don't want everyone to have their e-mail address :) they are so PARANOID! :] Ok, you asked if I took Furinol (butabital & asprin & caffine tabs) Yes. I know that in the past when I had headaches that would not go away (before meds) I would combine Advil(tm) & Tylenol(tm) together to get a better pain killing reaction, so I don't think that there would be a problem. But, of course, ASK YOUR DOCTOR befor you do that. Mine suggested the combining if the regular dosage didn't work.

To any one who asked the question about limited success with the IMITREX & ZOMIG, It does not work as it should with me. When I took Zomig, I didn;t get the same side effects as Imitrex, but I felt more strung out.H Hope this helps Take care, ~dianna~
Dianna <ghost@gte.net>
Norwich (for now), CT USA - Date: 01/18/99 (Mon) Time: 09:51:26 PM

LYNDA: Magnesium is supposed to help migraine sufferers, as well as vitamins B12 & B2, apparently there is a deficency in our diet that can trigger the migraine attacks. I would caution you in using WILLOW BARK extract if you have an allergy to asprin. It is the natural form of asprin & can cause the same allergic reactions. I hope that you are doing well. I just found out that it WON'T be snowing while I'm up here! *POUT* I was hoping to throw a couple of snowballs. Hey what happened to your SUN DANCE? *grin* I think you did the rain dance by mistake. I wish you all the gift of health & well being. God/dess Bless, ~Dianna~
Dianna <ghost@gte.net>
Norwich(for now), CT USA - Date: 01/18/99 (Mon) Time: 09:40:34 PM

This is for Suzanne, in reference to being hospitalized for iv DHE,Its not really that bad,just make sure to ask your doctor for something for nausea(Compazine by IM works really well).Hopefully you wont even need the medicine for 5 days.When I was hospitalized and had to have the DHE by IV because of rebounding,I responed quickly and became headache free in 3 days,then was only given the DHE when needed,however if you do need the medication longer,make sure they change they change the IV site every day or two.GOOD LUCK!!!!!!!!!!!!. CHERYL
Cheryl <cmsems124@aol.com>
Egg HARBOR Twp, NJ USA - Date: 01/18/99 (Mon) Time: 09:01:20 PM

I think I asked about this before but will try again. My Dr suggested I start taking 750 mg of Magnesium daily. I'm not sure if they've found us Migraine sufferers have a deficieny or perhaps need more than the RDA? I did find out from one person that Migracin plus is an herbal type pill that has Magnesium, Willow Bark & Feverfew. That sounds like a good combo. I did try for a few weeks to take the extra Magnesium but (as I was warned) I got diarreha. I've cut down on the dose & do take Feverfew. Preventatives of any kind have never worked for me.But I stick with the Feverfew. My Migraines are fewer & less severe than before but I also quit my job & have really been taking it easy. Also switched from Imetrix to Zomig. If any one has any experience with Magnesium please let me know. I'd like to keep up with it but lower dose may not be effective. Thanks~L~
Lynda <rkells@ttlc.net>
USA - Date: 01/18/99 (Mon) Time: 08:54:40 PM

Hello all. Had a miserable Sunday, the headache came back full-force and not a bit of relief in sight. Worst of all I missed the football games. [Yeah, yeah, get a life, I know :-)] Anyway, I finally tried the relaxation therapy somebody recommended to me, and it worked to a certain extent. Got me off the bathroom floor, anyway. Maybe when I get the hang of it it'll be better, I'll let you know. The good news (for me, anyway) is that Yahoo got my email straightened out, and it now works. PS: Thanks to everyone for the answers to my Excedrin question. I guess it doesn't matter if it's not available up here, since the regular stuff is, and I know it doesn't do much for me. Right now I'm going to go lie down in a dark room and stop staring at the computer screen. Wishing you all a pain-free week! Sav
JT Savage <jtsav@yahoo.com>
Calgary, AB Canada - Date: 01/18/99 (Mon) Time: 08:05:47 PM

I have been suffering from migraines since I was a little girl and now im 14. I have been taking paxil but dont find it is working... very often i need to go to the hospital for IMITREX or DEMORAL shots im am constantly battling this pain and spend alot of my time in th ER room. If anyone can give me any advice or help PLEASE email me!!! I dont want to spend anymore of my childhood in pain. Im desperate!! Thanks tons!! Tiffany
Tiffany <nofxchic1@hotmail.com>
toronto, ont canada - Date: 01/18/99 (Mon) Time: 07:30:06 PM

Dear fellow sufferers, I am new to this journal and astonished by all the support you give each other. I am in desperate need of some information, and would like to hear from as many of you who have been in my position as I can. I am not new to Migraines, but am new to the cluster type. I have had a headache since Dec. 6th, not getting the kind of relief I usually get from Imitrex. I saw a neurologist today and he wants to admit me to the hospital tomorrow for 5 days of intravenous DHE. I am terrified. Have any of you ever done this? I have only had Cafergot once in ny life, years ago before Imitrex, and it made me violently nauseated with vomiting. Can someone please relay your experiences, positive or negative, and any advice (like what anti-nausea helped). I need to know what I am up against here. Thanks so much, Suzanne
Suzanne <ksnluchs@aol.com>
Wheaton, IL USA - Date: 01/18/99 (Mon) Time: 07:22:54 PM

Trying to determine how I get something posted to this site: I tried the "enter discussion" but my posting didn't go up. Trying to see what this will do...
Suzanne <ksnluchs@aol.com>
Wheaton, IL USA - Date: 01/18/99 (Mon) Time: 07:19:44 PM

I would like to here from Linda in Sydney as i myself live there and i am curious about the medication you are on. i have posted my email undress(unlike the unnamable few) and would be quite happy to here from anyway that wants to talk about the issues at hand which is migraine prevention. Take care my fellow sufferers,as far as i am concerned the issue is now over and it would be great if those that did not want to help go elsewhere. regards dave
Dave <libra1@one.net.au>
sydney, nsw Australia - Date: 01/18/99 (Mon) Time: 06:35:39 PM

This is for Wendy-I tried to e-mail you and the server doesn't recognize you as a member. You access the now infamous discussion board by double clicking on the "ON-LINE DISCUSSION" choice at the top of this page. Have fun surfing the NET:-) To the rest of you--may you have a good day with little of no pain. My stress-induced migraine is still w/ me, but I am trying to tough it out b/c I had classes today and have WAY too much stuff to do. I am planning on seeing my doc ASAP since none of my pain meds are working for me now--even my narcotics which usually will kill ANY and ALL pain!! God bless each and all. Peace & love!
Emily <ekm310@aol.com>
Lawton, OK USA - Date: 01/18/99 (Mon) Time: 04:08:12 PM

hi, could someone please post or e-mail me how to access this now infamous discussion board.i'm new to aol and don't know where it is. it seems to me that people need to calm down and just let other people have their say. if barbara b. stays off the web page because people were being silly, that's ridiculous. there is no way on this earth in a forum this large we're all going to like every entry. people, i won't mention names, should stop telling other people to stop posting because their views are unpopular. i for one believe many headaches are from head injuries, hormones, which i'm suffering from today, rebounds, foods, etc. SO WHAT if one person thinks compassion isn't the answer, if god is the answer, if one person takes up too much space, or enters every five minutes, or makes a crack that was insensitive. we're all adults out there for the most part. seems like there's an awful lot of policing going on.wendy
wendy h. <blurtulip9@aol.com>
stratford, ct USA - Date: 01/18/99 (Mon) Time: 02:47:49 PM

to delores in nj. just wanted to take the time out to thank you for your four commpassionate entries. i didn't want to mention the persons name because i thought she'd been tortured enough. oh well, guess you did it for me, huh? you just validated what i was trying to say in my apparently, long winded diatribe, some people aren't willing to get better. that's o.k. maybe ronda should start asking you who should and shouldn't have a voice on this site. better yet, why not just start your own? deborah
deborah
boston, ma USA - Date: 01/18/99 (Mon) Time: 02:17:24 PM

Okay, okay, maybe I DIDN'T MAKE MYSELF CLEAR. Deborah, too bad you didn't leave your e-mail address! I HAVE GONE TO THE LIBRARY FOR RESEARCH!!!!!!!!!!!! I have also done my OWN nutritional "test" on triggers! I DO NOT PAY FOR ENDLESS MEDICAL TESTS AND SEARCH FOR THE DRUG OF THE WEEK!!!!!!!! Due to the percentage of people that have hormone induced/non-retractable migraines, and head injuries, it looks to me as if this forum is a good representation of the percentage of the people in the United States that DO have all of the above!! My diagnosis was in 1987---------gee, not an "endless" amount of medical searching! I won't even go into "naturalpathic" medicine. There IS a mind/body connection-we KNOW that! Re-read my post and this one, and PLEASE don't discount our stories! Yeah, it's a public forum, but I think people that slam our quest for help are not exactly nice, think they know all, and just have nothing better to do with their time. Rebound headaches exist---thank you for pointing this out so emphatically. Maybe someone will read that and try to get off all meds that cause rebound! Good suggestion (honestly!). Give us a break---we aren't stupid. And please post your e-mail address so anyone can talk to you without using the board for "venting." Don't be scared--you may have a great suggestion!!!!!
carolynr <richardson_carol@hotmail.com>
bremerton, wa USA - Date: 01/18/99 (Mon) Time: 02:16:08 PM

For Danielle, HI. Yes there are others who get occasional migraines without the pain. I get Occular Migraines with effects to usually one eye. Mostly zig-zag light patterns and difficulty reading my research books at the office. I also get very painful regular migraines but have become acustomed to working and living with them (for roughtly 30 years). I seldom seek pain relievers because any time I've mentioned headaches to a doctor I get rather blank looks or it gets ignored. I have been keeping a record. as best I can about what happens "around" my headaches such as what kind of food gets eaten, what the weather is like, what stresses are in my life, what other illnesses or medical problems I currently have and anything else that might be useful. One of these days I'll find a doctor that will listen to me and the information might be useful at that time. In the meantime, I simply try to live my life. I try not to cancel too many of the things I have planned to do and mangage to carry on most times. (I can't say I never cancel- I've been known to cancel a voice lesson here and there or take a rare afternoon off from work but for the most part I endure. Thanks for listening.
Katherine <bqlaw@bresnanlink.net>
Escanaba, , MI USA - Date: 01/18/99 (Mon) Time: 01:50:59 PM

**Kathleen** Thanks so much for sharing your experience--I couldn't of described the feeling any better--that is EXACTALLY how my head and scalp feel. It also lasts for days on me too-I can't pull my hair up on the sides or anything. I wonder if it has something to do with blood flow through the arteries and veins when a headache is in full swing? All I know is it hurts and is very sensitive and tingly--thanks again for sharing!
Tracy <smalltowngirlusa@yahoo.com>
MI, USA - Date: 01/18/99 (Mon) Time: 01:46:07 PM

To Tracy in MI: I usually have sore spots on my head. They feel just like bruises. When the headache is in full swing, and if I can get my son to rub my head, he can always find the spot that hurts. It's always in a different place, but always on the left side. Sometimes it lasts a week even if the headache is gone. He says that he can feel a vein bulging out. Also, if I have a really bad one for several days, my hair gets so sore that sometimes I can't brush it all. It seems That I've had every symptom going, but they change all the time. Hope this helps.
Kathleen
NY USA - Date: 01/18/99 (Mon) Time: 01:19:48 PM

Hello all--My first post was yesterday and since I posted I have received 4 wonderful--caring--emails from some very special people. We are all suffering here and what ever has been said in the past (which I do not know about nor what to) PLEASE lets just drop it and be here to support one another--no one understands best but those who are going through these same things. The info, advice, caring and concern in these posting are unbelieveable--I feel so fortunate to have stumbled upon it. :) Carrie--I believe I also get migraines with all the classic signs--I get the disconnected--fatigued--dizzy feeling. I also believe I am getting major "rebound" headaches which I would like to learn more about. Someone posted a website here for the Michigan Headache-Neurological Institute in Ann Arbor it's www.MHNI.com I looked at it yesterday and found it very interesting--they are sending me some info. I am on day number 2 of trying to stay outta the Excerdrin bottle--please wish the best for me I am for you all!! My the way my head is killing me!! :(
Tracy <smalltowngirlusa@yahoo.com>
MI USA - Date: 01/18/99 (Mon) Time: 01:11:31 PM

Can anyone suggest a doc in the Wilmington, Delaware area who isn't afraid to supplement preventative treatment with AS NEEDED pain meds? Thanks !
Joanne P <rehobothgrl@yahoo.com>
Wilmington, DE USA - Date: 01/18/99 (Mon) Time: 01:04:48 PM

to Sandra~ Regarding your pediatricians suggestion about Beta-blockers for childrens migraine...I think I'd see a headache specialist or Neurologist first. As you may know Beta-blockers (& calcium channel blockers) are a preventative used for migraine. It helps some people (not me unfortunately) but remember that Propanolo & Inderal are Anti-angina, anti-arrhythmia, anti-hypertensive meds. It is something to consider when taken on a daily basis. I have no idea what long term effects could be , especially with children. I do hope we all will find some relief soon! Take care~ ~L~
Lynda
USA - Date: 01/18/99 (Mon) Time: 01:00:37 PM

Hope every one got through the week end ok. I felt well enough Sat to go out to an Anniversary Party with a lot of old friends, had a great time, danced but only had one drink. I still paid for it with a Migraine early that a.m. & had to take the Zomig & crash til noon. But at least I went instead of saying" no I better not" like I've been doing. To Deborah C~ Yea, many women find they get Migraines just before Menstration &/or at Ovulation. A change in Hormones will do it, which is also one reason women who have never had Migraines may start them at Peri-Menopause. I'm 45 & have had them for 33 years. The really bad ones seem to be Hormonal. A low dose birth control pill might help, but b.c. pills can aggrevate Migraines too. In answer to your question about making people realize that Migraines are real, last weeks issue of NewsWeek had a good article about Migraines in it. Most of it wasn't anything new to us sufferers but at least it's a well-known & well-read magazine. Information on Migraines needs to be out there. 20-30 years ago I didn't tell anyone. I suffered in silence, made up excuses never went to a DR because no one took Migraines seriously. When I ended up not being able to work this year because of the frequency of the headaches I decided I would be very open & honest & tell eveyrbody. We can't keep this Disease in the closet. Good luck~ ~L~
Lynda <rkells@ttlc.net>
USA - Date: 01/18/99 (Mon) Time: 12:50:44 PM

to all of you out there suggesting to the rest of us to confine the comments you don't like to e-mail or disscussion boards, i suggest you follow your own advice and get over yourselves. this is an open to the public internet site. for god's sake, what do you expect, people from all over the world, from all walks of life to just play warm and fuzzy for your sake.? please! i don't like mean spirited behavior either but you're going to get some of that. as far as the comments people needing help etc. yes it's true,some of us do need it. i for one find migraines depressing. as somone said down the page, if my friends didn't sometimes point out to me narcissistic or inapropriate behavior, i might have continued complaining and not seriously made an attempt to live with this disease in a more healthy manner. i too was in the rebound, drug of the week search and was getting nowhere. i feel,as my naturalpath does, that 90% OR MORE of chronic migraine is MIGRAINE MEDICATION INDUCED. no one on page ever seems to adress this, or a preventive diet which has practically eliminated my daily migraines. it's always, " how many more drugs can i load into my body". i had to wake up, go to the library, and take control of this disease. it's all there! you don't need an expert to put you on a migraine diet, butyou might need a detox as i did, to get off those drugs! i was crying about my headaches at the same time eating sugar, chocolate, etc. i ate frozen yogurt last night, guess what, i have a migraine today, and i voluntereed for it!i'm not saying that there isn't such a thing as intractible migraine, i just don't believe we all suffer from it. if we put as much energy in going to doctors,and all the other work that goes into MAINTAINING their income for them,;into getting off the self pity and treating this illness as diabetic's have to, neurologists would be out of business. for those of you who think i'm not compassionate, being mean, i don't care, i'm not the one on 15 different meds, searching for a doctor to give me STRONGER more addictive ones,i've been to that hell, and i pray i never go back. and guess what, all the compassion in the world, and had i had tons of it from all sides, kept me sick. sorry, i took up so much space, but this wouldn't have fit on the DISCUSSION BOARD. deborah
deborah
boston, ma USA - Date: 01/18/99 (Mon) Time: 12:22:37 PM

Hello all, Hope this little note finds you all as pain free as possible. I dont want to jinks it but the Imetrex spray that I have been taking has been working ok for me. I take it just as the monster starts to creep its way back into my life. Sure it tastes bad and sometimes it gives me an upset stomach but as you know thats nothing compared to caging the beast. I go in this wed for more facet injections(both sides this time). Strangely enough since I got them on one side last week , my migrains and muscle tenson headaches have backed off a little. Go figure. Well good people I must go . I wish you all a pain free week
Morgan Walker <mwalker@vom.com>
Sonoma, Ca USA - Date: 01/18/99 (Mon) Time: 11:44:00 AM

For the first time ever I have called in to work because of a migraine. Usually they go away by the time I wake up but right now I'm sitting in a dark room typing this, with my right eye closed because all I can see out of that eye is little flashing lights. I've had migraines for about 8 years now (I'm 25) and I have finally picked out a pattern. It seems to be related to my cycle. Are there any other women out there who have cycle-related migraines, and if so, what advice do you have? I'd like to be armed with as much information as I can when I go to the doctor. On another note, how long did it take to make other people understand that you really had a problem and were not "being dramatic" or "trying to get attention"? My mother has just now realized that this is real for me, and my ex-husband never really did. Somehow that just makes the pain worse, especially when it's someone you care about who won't accept that your pain is real. But once they do, it makes a difference.
deborah c
st louis, mo USA - Date: 01/18/99 (Mon) Time: 11:16:54 AM

HELP. I've had migraines for the past 15 years and have tried just about every medication on the market. seen every "specialist" in my area(Ma). My headaches begin when i awake and sometimes continue for days, the longest was 9 weeks which ended with me in the E.R. getting "put down" w/ 150Mg demerol. Only to awaken feeling sick as a dog, anti-depressants make me feel like a zombie NSaids no longer cut it Imitrex gives me bad chest pain and the fiorinol which i used as a last resort bothers my stomach, Because of my job,I'm an EMT I 1.can't used any major opiad based drugs and be "zoned out". 2. Don't like taking meds to begin with especially those that have a dependency factor. NOW WHAT???
Tom M <emt339@tiac.net>
Ma USA - Date: 01/18/99 (Mon) Time: 10:00:33 AM

Hi I am new to this page and I am just wondering if anyone gets migraine without the pain, but symptoms of. I feel lightheaded, slightly dizzy, mentally confused. The neuro said there migraines. ANYONE HAVE A SIMILIAR SITUATION? Thanks soo much.It can last for two hours maybe a bit longer.
Danielle
Florence, nj USA - Date: 01/18/99 (Mon) Time: 09:43:22 AM

Hello. I'm new to this forum, but my story is similar to many. I am 40 and started having migraines at 19. They stopped for a few years but came back with a vengeance. They got steadily worse over about 7 yrs, during which time I tried every class of preventative med. Finally about 16 mo. ago I "crashed and burned". I had such daily pain I was admitted to a chronic pain clinic for 3 mo. of daily treatment (chiropractic, physio, relaxation therapy, exercise, biofeedback, psychological councilling etc) and put on methadone for the pain. I vomitted for 2 weeks straight and lost 20 lbs. I found I was either too drugged to do anything, or if the dose was lowered at all, I was back to the pain again. I opted for the pain and went off the methadone after 5 mo. When the pain clinic admitted that there was nothing more they could do for me, they sent me to another neurologist (my 3rd) at the university, and he has put me on a drug trial of a new anti-epileptic med. Topamax. It isn't a wonder drug, but it hasn't had any side-effects for me, and it has reduced the frequency of my migraines, and has given me my first pain-free days in over a year. I take zomig to try to abort, with only limited success, and percocet for the pain (I am allergic to codeine so it limits my options). For those who get pain in the eye, or migraine caused by an accident, I got relief by getting a nerve block of a novo-caine-type drug and a steroid in the occipital nerves at the back of my head. No pain in my eyes since. Someone mentioned getting cold with their migraines. I used to have the same thing, but now only my face gets cold (part of my aura). I find I get terribly thirsty with my migraines but my doc has never heard of this before. Anyone else have this? Two of my children also suffer from migraines. Their ped. recommends putting them on beta-blockers if the frequency increases. He says it is safe for children and doesn't cause drowsiness, lethargy, or rebound headaches. Worth checking into if you have kids with migraine. I have been reading about variable frequency photo-stimulation goggles that are supposed to stop migraines. Has anyone tried it? Would like to hear from someone before I invest any money in it. Good luck on your search for "the cure" that will bring relief and normalcy back to your days!
Sandra <edgecombe@powersurfr.com>
edmonton, ab canada - Date: 01/18/99 (Mon) Time: 03:17:54 AM

I actually lost weight on prozac/anti-depressants. And I eat great, don't get nausea or vomiting with a headache, just aura and photosensitivity. Good luck all! I sincerely hope you take this post in the manner it was intended. Go to the discussion board to give those ridiculous suggestions, and Barbara, THANK you for all your posts and great info!!!!! Keep a good sense of humor all, and don't get discouraged! Carolyn R.
carolynr <richardson_carol@hotmail.com>
Bremerton, Wwa USA - Date: 01/18/99 (Mon) Time: 02:23:54 AM