My "hormonal" migraines are more severe and less treatable, but more predictable. They occur 2-6 times per month both before and after my period starts. They are accompanied by diarrhea, nausea (and occasional vomiting), auras, a feeling of tightness and burden over my whole body. Imitrex often works well to control the pain, but not always, and it doesn't affect any of the other symptoms. Unfortunately, I had a reaction to my last Imitrex injection (2 nickle-sized hot red spots at the site of the injection), so I fear my days of using Imitrex are at an end. These migraines last from 36 to 72 hours. These episodes are followed by 2-3 days of malaise, i.e., the washed out, exhausted feeling that usually follows a bad case of stomach flu. Chocolate and red wine are the only foods that I have found to date that seem to have an effect on these migraines.
I have found that ice packs seem to help if I can use them in the early stages of a migraine, and if I can spend several hours with my head buried in the ice packs--usually this entails going to bed for the night. I take two codeine tablets and climb into bed with my head wrapped in soft ice packs. Often I awake without any lingering pain. I've also found that making every effort to eat well regularly and to rest during an attack seems to enhance recovery. The biggest aid has been learning not to panic at the onset of a migraine. Now that my migraines are under control, I know I'll survive. My first attack lasted for a month. After that, whenever a headache struck, which was all too often, I reacted with intense fear, which I think actually made the attack worse. Now, I know that I can treat myself, and even if the treatment doesn't work well, the attack will end in a few days. I now rarely wish for a handy guillotine to end the torture. I also no longer force myself to fulfill obligations while in pain. I've learned that if "friends" can't understand, it's their problem, not mine. I have my own problems to deal with--namely, migraines. I'm fortunate, all of my family and most of my friends are very supportive and understanding.
Ronda, thanks for your page. Reading about others experiences is enlightening and encouraging. Does anyone know where I can find a list of suspect foods? I only know the most famous, e.g., cheese, chocolate, red wine, shell fish, etc.
That night was only the beginning of my migraines. I suffered for the next 2 years. As time went on, they became more frequent until it was an every day occurance. The pain and nausea was so bad, I couldn't eat, sleep, or function at all. I even lost 30 lbs. I went to my doctor over and over. He was very sympathetic but outside of pain medication; vicoden and darvocet, and running between his office and the emergency room for shots of demerol, he was at his wits-end on what else to do. I felt hopeless. I was on Inderal and Midrin for a while. Nothing seemed to work. I had CAT and PET scans, EEG's, blood tests, lumbar punctures, nothing showed any abnormalties.
One day, I was enlightened of a HeadPain Management Clinic at a hospital north of town. Here, they were staffed with a team of Neurologists, Psychologists, Occupational Therapists, Physical Therapists, Dieticians, Dentists, Nurses and other health disciplines who were caring, dedicated and sympathetic to me and my head pain. This place made all the difference in the world for me. I was admitted to this hospital as an impatient where I was introduced to several different medications; DHE, Corgard, Pamelor as well as biofeedback, physical therapy, and occupational therapy. This program really worked for me! I even began to have headache free days and it was GREAT!
Now, 4 years later, I'm doing fantastic! I have many many pain-free days. I'm no longer on any preventative medications, nor do I suffer the severity that I once did. I still get a headache every once in a while, nothing to the extent that I did. The last year, I think I only suffered two migraines and was able to get them under control myself.
I am very understanding and sympathetic to people who suffer with migraines. How unfortunate it is that so few people truly appreciate what is means to suffer with a severe headache. I know the frustrations of trying to convince society, your co-workers, and your family that you are sick because headaches are so poorly understood.
Thank You for this page. I urge people who suffer not to give up hope on finding help. I've come across a good book by Dr. Joel Saper - "Help for Headaches." It also talks about these HeadPain Centers which are beginning to sprout around the country. It's worth looking into.
BE WELL!
I've tried pretty much anything that has been suggested to me, Cat Scans, EEGs, Sinus x-rayed, Jaw examined, Eyes tested, Allergies tested, Beta-blockers, Feverfew, anti-depressants all of. The most I received was a couple unwanted pounds, hallucinations, an overdose of painkillers and a loss of faith in doctors. I'd give it and run.
I have what has been classified as a "Chronic Daily Headache." From the moment I wake up to the time I fall asleep I have this horrible pain. I have often told my friends to picture their worst hangover headache and that is what I have everyday of my life. Sometimes better sometimes worse, but always constant. I'd give it and run.
They seem to come in waves over a matter of weeks, progressing until I am reduced to a crying child in a dark room, then receding and gainig. I can handle them on a day to day basis but when I look to my future it overwhelms me. I have no desire to have children the thought of the crying, the constant questions, the smells it isn't possible. Until they go away I will never have a family. I'd give it and run.
My family and friends have been so wonderful and understanding. It must be hard on them, not only that my mood swings are unmeasureable but also to see me in such pain. Yet they rub my back and bring me hotwater bottles for my neck. My boyfriend is always just a phonecall away in the middle of the night to listen to my sobs and reassure me I'm going to make it just fine. I've grown up so much faster than my peers I am not a normal 19 year old. One doctor asked me how I get out of bed each day, I can only do it with the support of my family and friends. I'd give it and run.
I didn't write this for the sob story effect. I am stronger than that, and I will beat this. I've got a few things to try yet, a chiropracter and an MRI scan. What I did write this for was to reach out to the other sufferers, and ask for any help or suggestions. Last night was not one of my worst headaches but I was still that sobbing child in a dark room, I may be strong but I am not superwoman I'm tired of all the pain. If you have any help please don't be afraid to e-mail me Thank you.
---Julie bpaynter@interhop.com
Thanks!
---Stephanie pagebnb@norfolk.infi.net
I consider myself blessed to be married to a very understanding and beautiful wife who has helped me extensively over the years to get some kind of relief. In our early marriage she would just take me to the E.R. where they would give me a shot of demerol and I would go to bed and sleep off the pain.
In the 80's, we heard from a friend, that she had found some relief in Chicago at Diamond Clinic so we tried them, with great success at first, but for some reason I always seemed to build up a tolerence to the meds they perscribed and when they started charging us $25 for talking to them on the phone we decided to go to a local neurologist.
I am currently taking 85 mgs. of nortriptylene at bedtime and IM injections of phenergan and DHE.45 when the pain starts. I tried Imitrex when it first came out but my neurologist thought I was getting rebound headache so, being that my wife is an R.N. they decided to teach me how to give myself the DHE/phen. injections. I dont think there is anything more painfull than a 50 mg. IM. injection of phenergan except for the migraine of course. Usually, when I'm having a bad attack, I can't lay down because the pain gets so much worse. I don't like to take the injections because they just put me to sleep and leave large painfull lumps on my thighs, and I feel like I'm sleeping my life away. Because I put off taking the meds for so long sometimes, I believe I'm my own worst enemy because then the meds don't always work and I end up in the E.R. to get a shot of demerol or dilaudid.
I hate to think of how many times my pain has either ruined a planned family outing, or I just stayed home because I was in too much pain and was afraid I'd ruin everyone else's fun. I sometimes get very depressed and/or angry at myself and others because I'm so tired of the pain.
I have worked at a local hospital in the engineering dept. for 22 yrs. and, am very gratefull to have a supervisor that understands when I'm in pain. He lets me decide whether I can keep working or if I need to go home and take a shot. I'm also in a work area by myself and so far no one has been around when I've had to vomit. I hope I'm lucky enough, that it doesn't ever happen. I would be extremely embarassed if it did.
About a month ago while answering a repair call on a patient transport cart at the pain clinic at work they suggested that I get an appointment, so now I will try this next step and hope for the best.
I can't thank you enough Ronda, for setting up this site, for myself and other migraine sufferers. I have found things here that have eased my pain somewhat,such as flourescent lighting and sunlight triggering an attack. I now wear my sunglasses all the time, not just when I'm outdoors, and it has helped. The best thing about most sufferers is that we NEVER GIVE UP HOPE, though sometimes its very difficult not to, especially during an attack. God willing someday they will find a cure and we can all lead a better life. Thanks also for letting me ramble on like this.
---Bob Matheson Welderman2@AOL.com
Ronda you have provided a wonderful site that I can get so much information from. I can not thank you enough for sharing your experience.
Be pain free,
---Miriam Zuzak hyp@surfhi.com
This sounds silly, but it helps. Buy a vegetable brush, soft bristles, and massage the head every night and morning, go front to back, from above the eyes, all along the base of the nexk, and behind the ears. This is suppose to stimulate the blood vessels. also, try pressing the little dent behind the ear (about in the middle) to releave some of the pain. When I did this on a regular basis the headaches were much less severe.
I am taking Toradol, 10 mg. and it seems to lessen the migraine so I can function. I don't have to lie down and I can do some things. It doesn't put me out. The dr. seems to think my migraines will quit when my periods quit. Did this happen to anyone out there?
Are there any herbs that help at all?
---R. P. Nesbitt r3f7u4py@abaco.coastalnet.com
I too have tried everything from various combinations of drugs, to biofeedback, relaxation, physical therapy, psychotherapy, MRI's, CAT scans, blood work, pain diaries, elimination diets, nutritional supplements, chiropractic, acupuncture, aromatherapy, herbs, etc. I have found that the best help for me is a combination of various things - - relaxation, visteril (a relaxant for when the headaches are getting their worst), physical therapy for my muscles (only occasionally as this is quite expensive) and acupuncture. I used to find Imitrex to be my savior and my safety net. However, I have developed a tolerance to it and since I had some cardiac problems that arose from an administration of DHE in April, my neurologist will no longer prescribe Imitrex at all.
Feel free to e-mail me at rpdesantis@aol.com
. I would love to share war stories and information.
I wish everyone the best luck. Try to live when you can.
Thank you!
---Pam De Santis
My doctor, neurologist, has referred to them as "intractable" anybody know what that is? I've been on Inderal (made no difference), Nortriptylene (still trying it), Midrin (didn't do a thing), and Depakote (made me sick and gave me headaches of its own). I've been given Imitrex, but I have not been able to give it a try yet. He has also prescribed DHE in a nasal spray. Anybody know about this stuff? I'm waiting for the DHE to be delivered.
I'm still new at this and could use any info anybody has. How do you keep track of them? What do you chart? How do you know if you doctor is good? What do I do and what do I look for? Please write - I could use the help.
By the way, I'm glad I found this place.
I was taking Imitrex for the headaches but they always came back, starting out mild and finally until a full blown attack.
I am now using DHE nasal spray and it has been a miracle for me. I haven't got a recurring headache since DHE stays in your system longer than Imitrex. Last month, I had only 5 headaches which were stopped within 15 - 20 minutes with the DHE nasal spray.
The spray IS CHEAP, especially compared to Imitrex. It has to be made by a compound pharmacy (a pharmacy that makes its own drugs).
I feel like I have a life again and I know you all know how that feels. Feel free to contact me if you have any questions about this drug.
---gail-number-one@worldnet.att.net
I've had every test you can think of and have tried just about every medicine known to man. Plus Feverfew, magnesium supplements, chiropractic, and actupuncture. The "wonder drug" Imitrex has no effect on me anymore. It worked really well for the first year then lost its effectiveness. I give myself shots of DHE and have been doing so for about 3 years but it too has lost its effectiveness. I can only treat my headaches with Vicodin ES and Stadol NS. I alternate the two drugs to try to cut back on any rebound headaches and from building a tolerence to the drugs, which I am doing so anyway.
I've been in the hospital ER at least once a month for the past 2 years for shots of Demerol. Demerol is about the only drug that helps my really skull shattering migraines. I am so tired of the way I get treated by the doctors in the ER. As soon as you tell them that yes I've tried Imitrex and no it doesn't work for me they treat me as a "drug seeker." Why is it that most doctors beleive that not only does Imitrex works for everyone but also totally knocks out a headache? Even when Imitrex was effective on me, it never knocked my headache out...it just made it more bareable without the side effects of narcotics. I've been hospitalized 4 times in addition to the once a month visits and recently...oh joy of joys...my nuerologist of 4 years told me he can no long do anything for me so I'm looking for a new one. Talk about feeling abandoned.
I am now unable to work due to the migraines. I have them so frequently through out the month that I was getting fired from jobs left and right...even working as a Temp I got fired! My husband and I have decided it's time for me to stay home and file for SSD. I did read a letter from another migraine suffered in Illinois that said she did get SSD but really had to fight for it. I've got all of my paper work in and am preparing to appeal if I get turned down.
I would appreciate hearing from any other migraine sufferers on how they deal with the guilt involved with having migraines. I've messed up so many plans and have missed so many events that I feel just awful that people can't depend on me. My biggest guilt is that my husband has to take care of me. He does this happily and lovingly but I hate that he's the only one of us that works and when I'm headaching he has to do the house hold chores and take me to the doctor or hospital or just to the bathroom to throw up. He gets mad at me for feeling guilty...he tells me that if he didn't know what he was getting into he wouldn't have married me but I still have the guilt sometimes.
If anyone has any suggestions on how to deal with this please e-mail me. My name is Pam and my e-mail address is hberg@ais.net. Thank you.
I average anywhere from as few as four headaches a month to up to 12. Sometimes I get a series of headaches that can last for weeks. The last one was about ten weeks of constant headache and nothing helped get rid of it until I tried Breaththerapy (which is a form of breathing combined with meditation). It has been a godsend. My headache has not returned for any significant time (meaning over an hour or two) for over a week.
It was quite a relief to me to read some of the other stories on your site. I don't feel quite as alone knowing there are unfortunately other people who have migraines with the same severity as mine. I look forward to checking out your site more in the future. Anyone who wishes to converse, commiserate etc. send me an e-mail and I'll talk to you.
---Alli @ hps@best.com
After reading of the success that many of your readers have had with Imitrex, I am considering talking to my doctor about it. After 8 years I am just about ready to try anything. Most of the doctors I have consulted do not believe my symptom are migraine related, but after finding you magazine, I'm starting to believe they could be wrong.
I would like to hear from other people who have the same or similar symptoms as mine. My e-mai address is trbaun@key-net.net
Thank you for all your information.
---Paula L. Baun
I have had all types of neurological tests-Brain Scan-Elect Enc-Brain MRI-Carotid Arterial flow-Sinus-all negative. Percoset sometimes relieves but nothing else.It will fade in and out for random periods during the day.I was treated at the Montifiore Headache Center with almost every drug combination available,from INderal,eta and Channel blockers,Anti Depressants,Cafergot,Wygraine,Anti Inflammatories and many more. The only drug that ever worked was Prednisone-40 mg at night.I discontinued it after 2 months because of reputation of possible serious side effects.
I have tried a Chiropracter-Acupuncture-Bio Feedback,without results.My health is generally good.Been advised that my blood work is "perfect".Chloresterol is 146 and everything else is in the normal range.Blood pressure is in the 130 to 140 over 75 range.I am 6'2" and my weight stays around 186.I recently tried Imitrex and have been on Neurontin for 2 weeks without any change I have no stress-either before or after retirement,I am happily married and my family life is great. It's tough-as all migraine suffers know to live with a headache with at least one or more headaches every day of your life. Maybe someone out there has a clue. Thanks for listening.
Sincerely,
---Scotbarr Scotbarr@aol.com
to those who have contacted me regarding my luck with a different medication, thanks, and please try for yourself. For those who haven't contacted me, please do so, particularly if you suffer from CLUSTER HEADACHES, but I will also pass on info to MIGRAINE sufferers as well.
Two other matters:
---Gary bigfeats@ozemail.com.au
I am now 35 years old and I have migraines sporatically. I might not have a classic migraine for as long as 6 months and then have several in one day or over a period of weeks. I have always had success with feverfew (3 capsules a day). I noticed if I took them consistently I would not get a migraine for months, if I slacked off taking them,the headache would return. At the end of last year, I began having migraines too frequently and decided to start taking medicine to completely stop the migraines. The neurologist gave me Calan Sr, 2 times a day. I had read an article that Calan SR causes Cancer so I stopped taking the Calan about 3 months ago. ( I continued to have Migraines even while on medication). I have had several migraines since then.
My problem is not the pain of the migraines it is the Aura that freaks me out. It starts with my hands looking like their detached from my body, then I get the flashing lights, loss of vision in both eyes, numbness and tingling in my face, arm and hand, after that my speech and thinking gets confused, I get the shivers really bad, and I'm not even cold! I HATE IT!!! What if I am far from home or at a place where I can't get home in time? My worst fear is being with my family on vacation or in a plane or somewhere where I can't get away. I find myself making excuses not to drive by myself just "in case".
I feel so foolish and I want to get over this. If anyone has experienced this type of fear, please e-mail me at crislerfam@earthlink.com.
Thank you,
---Cindi Crisler
For years I have suffered from increasingly severe migraines. By June of this year I was having 3 to 4 attacks per week. By July, I was seldom pain free. My doctor had run the standard battery of tests and had tried all the medications that he and several specialists could dig up--some with horrible side effects. By then I was desperate. Suddenly it hit me; most of job consists of finding information on the net for people, but I had depended on "medical professional" to do my knowledge hunting for me. Firing up some search engines, I eventually came to your site and was amazed at the wealth of balanced, reasoned, information you had available. After extensive reading, I decided to try feverfew. Within 3 weeks of starting the treatment I was fully migraine free for the first time in years!
Interestingly, even though I put together quite a bit of printed information for my doctor to look at, he still considers feverfew to be worthless :) The really sad thing about that is that he has a teenage daughter that suffers from fierce migraines herself.
Ronda, from the bottom of my heart, THANK YOU!!!!!!!!!
---Paul Young bicycle@inlink.com