Journal of Migraine Sufferers

Previous journal entries: August 1996 (part 3); January 1997 (part 1). I am 41 years old and have both complicated migraine and classic migraine with aura.

I have a younger sister with MS who gets relief from paralysis by taking ice baths. I love my showers quite hot, so the thought of ice baths makes me shudder. However, I found some relief from migraine symptoms by putting my hands in very cold water for a few minutes.

Two weeks ago, I woke up with paralysis (8), blurred vision (5), difficulty speaking (5) and difficulty concentrating (4). Half an hour later I decided to move a large turkey from the refrigerator into a tub of cold water. My hands were in the cold water (or on the half-frozen turkey) for 5-10 minutes. My symptoms went to nearly zero within a half hour and stayed that way until I got overheated later in the day. However, I wasn't quite ready to believe that the cold water did it.

This morning I woke up with paralysis (8), blurred vision (6), difficulty speaking (8) and difficulty concentrating (7). I stayed in bed an extra hour, but didn't feel any better, so I decided to try the cold water treatment again. I filled a large bowl with very cold water and kept my hands in it for 5 minutes, on and off (I can't stand it continuously). 20 minutes later my speech and vision were normal, it was much easier to concentrate and the paralysis was better (3). Instead of blowing off an entire day from work, I lost only half a day.

As I write this, eight hours after waking, the paralysis is slowly diminishing and the band-like pressure around my head is getting stronger (my usual routine). If this trend continues, by tomorrow this episode should be completely over. If I relapse, I'll certainly try the cold water treatment again. My husband says there are a lot of pressure points in our hands, and maybe the cold water helps the neurological messages to straighten out. Who knows??

---Beth (Boston, MA) bot4966@dcrb.dla.mil


My prototypical migraine headache rarely changes. It always follows the following parameters:

I hope this information helps. I'll be sure to check your web page for any updates. Good luck in your research!

---Linda Kline - age 34, New Castle, Delaware Montgom62@aol.com


After reading many journal entries, I feel like I'm a "lucky" migraine sufferer -- once a neurologist finally diagnosed my headaches (after seeing at least 5-6 ENT docs, an allergist and several primary care docs over the span of about 10 years), I was given Midrin and that has given me enormous relief. But once I get in a headache cycle, the Midrin helps but I'm still down for several days, if not in excruciating pain then at least in moderate pain and/or confusion. I have definately missed out on life at times due to the damned things.

I am a 29 year-old, single female. A couple of years ago during graduate school I developed clinical depression and have been on SSRI's (Zoloft or Paxil) ever since. I tried to go off once and had a problem with the anxiety/depression symptoms returning.

Migraine is frequently associated with anxiety and/or depression. I would strongly urge migraine sufferers to do a self-test for these conditions (I'm sure there are depression and anxiety checklists on the Web somewhere) or consult a physician, psychiatrist, or psychologist. When I found out I had depression I was mortified -- what, me?? I'm not THAT bad off! Well, I was that bad off. And I needed medical attention. Depression and anxiety I'm convinced can be low-level, kind of "underlying" conditions that may not cause you to lose your job or have a nervous breakdown, but can nonetheless have a deleterious effect on your nervous system.

The reason I'm mentioning anxiety and depression is that I believe the effects of these conditions on the nervous system can exacerbate migraine and other types of headaches. A migraine sufferer can find him/herself battling a constellation of conditions, and the cause-effect chains are rarely clear. Stress plays a MAJOR factor, of course, and I don't mean just the kind of "acute" stress that might hit you one day, then leave. Stress doesn't have to be tied to a stressful event. Stress just is. It courses through your blood like a poison and messes up your organs. I think many of us operate at a very high level of stress without even realizing it.

Migraine sufferers, unfortunately, cannot ignore their level of stress. Other people can exercise it away, drink it away, or simply ignore it. Our heads will not let us do this. It's NOT FAIR!! I have had to make a major life change by viewing my condition (both the depression and migraine) as a chronic situation that I must manage every day. I do a teeny bit of maintenance every day instead of looking for major, huge interventions that I can apply and be done with it. Migraine doesn't work that way. A proper amount of sleep, a balanced diet, very little sugar, caffeine, or alcohol, and exercise are crucial. Even a small amount of exercise, even a walk around the block, will contribute to your well-being. I practice behavioral techniques to control my temper -- ie, when I'm in a tense meeting I concentrate on my breathing and not what I want to say next. I pay attention to my body language and try to quiet irritable reactions of over-gesturing, getting in people's faces, getting angry, shooting off my mouth. Calm is good. I am not by nature calm so it is hard! I also need a few minutes of absolute silence every day. No, not with the TV or music on, but utter silence. Your nerves are stimulated every second of the day, and I think migraine sufferers have an over-active nervous system that makes us EXTREMELY sensitive to sight, sound, and smells. To combat this you need to quietly rest and let your nerves recede back into your body. You must try to quiet the mind and take your consciousness into your body to quiet the nerves. Your nerves need a chance to build up a nice, thick balm that will protect them from the vagaries of the external (and of course internal) stressors.

The best maintenance therapy is yoga, I have found. Experienced yoga teachers have very specific treatment regimens for headaches, and I follow these as much as I can. If I don't do them, I get a headache. If I DO do them, I still might but I can usually bounce back more quickly. Acupuncture is also good but the beauty of yoga is that YOU are in control. Actually physically being able to control my headaches through yoga is the most empowering feeling I have ever had in my life. I cried with joy when I first was able to reduce my symptoms. I hope I don't sound too preachy, but yoga is the closest thing to TRUTH that I have found.

Thank you for reading this! And good luck with your headaches.

---KVanvors@CCMAIL.uhc.com


Dear Ronda-

I have been suffering migraiines since the age of 40. First I started getting them on Saturday mornings as I relaxed and slept iin after a full week's work. I am now 56 and get 2-4 migraines a month. I am still having regular periods and have not gone through menospause yet. I have been to regular doctors, a headache clinic iiin Los Angeles and to neurologists. I have inderol and betablockers for prevention of migraines. Now I am not taking any preventative medication and it doesn't seem to make any differences iin the number of migraines I receive each month. I always get 1-2 migraines the week I have my period so they are relaated to the ffluctuation of hormones. I also get migrraines from red wiine, not getting eenough sleep or haviing irregular sleepiing and waking up schedules, from getting overly hungry and waiting too long to eat and from excessive stress. If I don't have at least one cup of stroong coffee a day, I get a migrraine. I try to exercise regularly, sleep regularly, eat at least 5X a day in minisnacks and avoid alcohol. Yet daily I live iin fear of migraines, because they are so painful. I am still using cafergot for paiin relief, but I am getting more rebound headaches if I use more than 2 tabllets. I am intterrested in obtaining more informatiioon in order to live a more comfortablle life.

Thanks,

---Carole Anne carolann@lsbsdi2.lightspeed.net


HI, MY NAME IS MARCI . ON FEB 18 I WILL BE 17. IN JAN. I FOUND OUT THAT I SUFFER FROM MIGRAINES. TODAY IS FEB 14 AND I HAVE HAD THE SAME MIGRAINE FOR THAT PAST 36DAYS WITH LITTLE RELIEF. DON'T GET ME WRONG I HAVE HAD SOME RELIEF A DAY HERE, TWO DAYS HERE MAYBE UP TO 5 DAY BUT THAT WAS ONLY ONCE. OTHER THAN THAT IT HAS BEEN 36 VERY PAINFUL DAYS. I AM AT THE POINT WERE I DON'T KNOW WHERE TO TURN. THAT IS WHY I AM SO GLAD MY DAD FOUND THIS PAGE. I AM GLAD TO FIND OUT I AM NOT ALONE, AND MAYBE I WOULD BE LUCKY ENOUGH TO FIND SOMEONE IDEA THAT MIGHT WORK FOR ME.

WELL MY MIGRAINE STARTED OUT JUST LIKE A NORMAL HEADACHE. I DIDN'T THINK ANYTHING OF IT, UNTIL THE NEXT DAY WHEN I WAS UNABLE TO LIFT MY HEAD UP OFF MY PILLOW. THAT DAY I TOOK ALIVE ( WHICH REALLY DIDN'T NOTHING) THAT NIGHT MY HEAD GOT REALLY BAD. I WAS JUST LAYING IN THE DARK WITH AN ICE PACK ON MY HEAD. I WAS CRYING BECAUSE OF THE PAIN. SO MY DAD RUSHED MY DOWN TO THE HOSPTIAL. THE GAVE ME SOME MEDS. THAT MADE ME FEEL BETTER THAN SENT ME HOME. THE NEXT MORNING MY HEADACHE WAS BACK. WE CALLED THE DOCTOR AND SINCE HE COULD NOT FIT ME IN HE SENT ME BACK DOWN THE HOSPTIAL. THEY GAVE MORE MEDS. WHICH HELPED FOR A WHILE. WHICH IS WHAT I WANTED. I WANTED IT TO GO AWAY. THE NEXT MORNING I WENT TO THE DOCTOR. HE GAVE ME SOME MORE MEDS. HE GAVE ME IMITREX. WELL BY THE TIME I WAS SUPPOSED TO GO BACK TO THE DOCTORS I WAS TAKING 300MG OF IMITREX A DAY. SO THE DOCTOR DECIDED TO GIVE ME A SHOT OF IMITREX. IT WORK I DIDN'T FEEL BETTER SINCE I GOT MY HEADACHE. WELL WE WILL JUST SAY IT LASTED UNTIL THE NEXT MORNING. SO WHEN I WENT BACK TO THE DOCTOR HE GAVE ME THE SHOTS TO TAKE HOME. WELL I WAS GIVING MYSELF AT LEAST ONE SHOT A DAY, WHICH REALLY DID NOTHING FOR ME. ATER TRYING MORE MEDS (MIDRIN, AND LODINE ECT...) MY DOCTOR DECIDED TO SEND ME TO A NEUROLOGIST. THE ONLY PROBLEM IS THAT HE COULD SEEN ME FOR 3 WEEKS, AND MY DOCTOR SAID THERE IS NOTHING ELSE HE COULD DO FOR ME AND I WOULD JUST HAVE TO WAIT UNTIL I SAW THE NEUROLOGIST. AFTER A WEEK LIVING IN SO MUCH PAIN . MY DAD CALLED THE NEUROLOGIST AND EXPLAINED HOW MUCH PAIN I WAS IN AND HE GOT HIM TO SEE ME THE NEXT DAY.

AFTER 45MIN TALKING TO THE NEUROLOGIST HE SAID I SUFFER FROM A COMMON MIGRAINE. (WHICH TELL ME ALOT) HE GAVE ME SOME MEDS WHICH INCLUDED AN ANTI-DEPRESSANT. HE SAID THEY WOULD TAKE 3 MONTHS TO WORK. HE ALSO GAVE ME SOME PAIN KILLERS TO TAKE ONLY WHEN THE PAIN WAS REALLY BAD. WELL I ENDED UP TAKING THEM EVERY 6 HOURS. WHEN WE CALLED HIM HE SAID THERE IS NOTHING ELSE HE CAN DO FOR ME. SO NOW MY DOCTOR AND NEUROLOGIST HAVE WASHED THIER HANDS OF ME.

AFTER TALKING TO MANY PEOPLE AND READING AS MUCH AS WE COULD WE DECIDED THAT I WAS GOING TO TRY THE NATURAL WAY TO GET RID OF THIS. SO I WENT TO A CHIROPRACTOR. THE CHIROPRACTOR I WENT TO BELIEVES IN ALL THE NATURAL STUFF. HE TOLD ME THAT MY SPINE WAS NOT LINED UP. AFTER CRAKING MY BACK AND NECK HE SAID IT WAS ALL IN LINE NOW. I HAVE SEEN HIM 3 TIMES NOW AND I HAVE TO GO BACK TOMORROW. HE SEEMS TO THINK THAT THE WAY I SLEEP, THE PILLOW I SLEEP ON AND THE FOODS I EAT HAVE SOMETHIING TO DO WITH IT. WELL I AM REALLY NOT FELLING THAT MUCH BETTER. SO RIGHT NOW I HAVE NO CLUE ON WHERE TO TURN TO. I AM JUST LOOKING FOR SOMETHING THAT WILL GIVE ME SOME RELIEF. IF YOU HAVE ANY IDEAS PLEASE WRITE BACK. I AM WILLING TO TRY ANYTHING AT THIS POINT.

---MARCI Fsrmts@aol.com


I hesitate to write this after reading so many others' sufferings that are similar to my own wondering what, if anything, new I could say. I have had headaches-migraines-facial pain since I was 18. I've tried every prophylactic drug, ergotamines, sumatriptin, acupuncture, biofeedback, physical therapy and regular exercise to try to control the pain. I've been hospitalized for depression (the depression that comes with chronic pain-although this is never addressed by the doctors) and am viewed as another "neurotic female" by most physicians. I seem to have a confluence of factors - hormonal, tension, TMJ, rebound headaches, rhinitis, sinusitis that contribute to the almost daily struggle to keep the pain at bay. My situation now is rather overwhelming-I've quit my job (could no longer deal with the stress through the fog of constant pain) and my husband's insurance company is trying to deny me coverage because of past medical bills. I can no longer afford the quantity of imitrix (8 injections) per month to keep me functioning and I cannot find a doctor who will listen to me and prescribe cheaper pain-killers (narcotics) to keep me up and about. Today, my son almost got hit by a car because I was absolutely sick with a migraine and unable to keep a watchful eye on him. The neighbors now think I'm a bad mother - it's hard to justify your actions and motives to a world that doesn't understand the pain. I'm desperately trying to keep the hope that some doctor out there will understand and not just blame me for that which I've spent most of my life blaming myself for and will take the time to look at the variety of factors that contribute to a pain that hurts my soul at its peak. I want to begin job-hunting, continue the work I love and keep the creditors away, but cannot until I have the headaches under control. If anyone has found such a doctor in the Milwaukee, WI area, please E-mail me. This web site is a lifeline on days when I'm throwing up and unable to think past the right side of my head. Thank you.

---8401301@intaccess.com


Hi Ronda!

It's taken me a long time to write to you and put my story out there for all the world to see.

I'm female, 45 years old, pre-menopausal, I've suffered from migraines since I was a child. I can vividly remember my first migraine. I was about nine years old. The pain was intense and I was throwing up. I got no comfort or care from my parents because my father suffered from migraines and they said I was "just a chip off the old block". I grew up believing that having a headache was not being actually sick, that I probably did something to cause my headache, I didn't eat right or get enough fresh air or enough sleep. It has taken a very long time to get beyond those feelings and I'm not sure I really am.

The headaches got worse and more frequent through the years. In the last five years or so, since I went back to work full time, they went from every other day to every day. Last year (1996) I went to a pain specialist, who sent me to a physical therapist, who suggested a doctor who specializes in environmental medicine. He said my headaches were caused by the irritable bowel problems I had, that I had a yeast infection in the bowel. He put me on a yeast free, wheat free, sugar free and dairy free diet. I lost 15 pounds, which was great and I did get my irritable bowel straightened out. Unfortunately, my headaches seemed to be worse.

In November, 1996 I went to see a headache specialist at the Speed Headache Clinic in Baltimore. They determined that I took too much pain medication (which I knew), cafergot, phenobarbital, vicodin, advil, and that I was getting rebound headaches. They helped me get off the cafergot with three weeks of prednisone and it wasn't as bad an experience as I feared. They started me on lopressor, 100mg twice a day and amitriptyline, 75 mg. at night. Once off the prednisone, my headaches returned in full fury, worse that I had had in years. Then they had me do self injections of DHE-45 twice a day for two weeks. I felt pretty good, but once again, without the injections I couldn't function. At this point they thought that I was past the rebound headaches and that I had to be on some preventive medication to keep the headaches away.

I now take, in addition to the lopressor and amitriptyline, the following medications: methergine, .2 mg. three times a day, lasic, 40mg. once a day to help with the fluid retention caused by the amitriptyline and a potassium supplement because the lasic depletes the potassium supply. Does this make sense? I also take reglan as needed for the nausea and vicodin and fioricet for pain as needed. I can only take the pain medication twice a week. I don't think I am very far ahead. I don't go out very much because I really can't control the pain like I used to and I have also gained back the fifteen pounds and can't seem to lose an ounce. I do not like being on all this medication.

I would welcome any advice on how to deal with the pain without taking all these pills. The doctors have talked about biofeedback, learning stress management techniques and lifestyle changes, but lately they haven't metioned them. Maybe after a few months on the Methergine they will try one of those.

My headaches are better, I still have mild pain every day, and some moderate to severe headaches once or twice a week. The vicodin helps, but it makes me very sleepy, so I have to be home to take it.

It is such a relief to read the case histories and especially your "worst advice" page. It's nice to see I am not alone.

My email address is ahart9@aol.com and mail is very welcome.

---Regards, Wendy


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