Journal of Migraine Sufferers

I'm a 45 yr old white female who suffers with daily migraines (sometimes with auras, but usually with lights all kinds of visual disturbances). I was married in '74 at age 22, and still married to same wonderful guy.

I've never been able to handle normal stresses most people experience daily. Children made me especially nervous and tense with loud screams, crying and fussing, so I knew then I never wanted children. But my life is still too full of stress. To date, I'm almost an invalid in so many ways because I can't work much in the home, not at all outside the home, and can't exercise much at all. Arthritis has limited my movements because I suffer from severe neck and back spasms which limit movement and breathing ability for 1-2 days at a time, lasting up to 2 weeks. But I can't move my head up and down or sidways without getting a migraine. All this inability to function well and to "live with the pain" has left me battling daily depression also.

>From ages 12-24 I suffered from what the neurologist (nowadays) calls BICKERSTAFF MIGRAINES... migraines preceeded by Grand Mal Convulsions (always with a bright blue blinking light that "forced" me to spin around in circles to chase it before collapsing unconscious) and followed by 14 hrs of coma- liike sleep. But upon awakening, the worst migraine you'll ever want to have, along with all the neck and muscle pain from the Grand Mal. I never lost control of bowel or bladder during those seizures, which might explain why the anti-convulsants didn't work. Back then drs. didn't realize these were a form of migraines (even though Mom had them all her life until she went through menopause). They usually affected me whenever I was quite exhausted or lacked proper sleep for a week or so, and they usually occurred around my period.

I was seizure free and headache free for about 10 years...until age 34 ...when I started seeing the typical migraine aura called "scotomata." It would take about 20-60 min. for this aura (which started in the small center field of vision) to slowly enlarge so much that it would be in my peripheral field and then I could read again. It eventually leaves the whole field of vision. This happened for only 1 year with no migraine following. But after that migraines, auras, lights, etc. hit full force and I fell prey to sickening migraines, often with runny nose, diarhea, nausea and unable to endure lights.

For the past 7 years now I can't even get too happy, too excited, listen too long, read too long, work too long talk too long, etc. Barometric pressure drops bring on a migraine, as well as certain lighting (can't take those flashing lights either) and certain perfumes. What kind of a life is this? My neurologist seems to think there's nothing to be done but keep taking the 2 Fioricet tablets every 8 hrs as needed. (I generally only have to take an avg. of 2/day, unless my activities demand movement on my part). Imitrex didn't work. One Summer weekend in '95 I was hospitalized for unending migraines which prevented me from walking ever so gently without stabbing pains causing me to cry out in agony. I was given periodic injections of DHE (dehydralized ergotamine). That helped with the migraines but gave me phlebits for a couple days or so. I wish I could return to my secretarial employment as a Kelly Girl or similar temporary agency, but it's impossible. Mom wants me to look into Social Security disability benefits. Do you know how to go about this and whether or migraine sufferers have obtained it without too much hassle?

Any comments or suggestions on my migraines? Others with similar stories and solutions they've found? Help, please. Thank you very much for listening!

Love, Mickey Mickstoy@aol.com


Hello Rhonda,

This page is a wonderful thing, it comforts those who experience sensations which feel life threatening symptoms which are actually migraines.

I suffer from ocular migraines with stroke like sensations such as numbness on one side and lightheadedness etc. My MD suggested Imitrex but the side effects listed made me decide to seek alternative methods. I went to a Chiropractor a month ago and the treatment has reduced my migraine episodes from 5-7 per day, to 0 to 1 or 2 per week. I recommend trying the Chiropractor treatment before the drugs.

Good Luck,

DAveW davew@inc-net.com


Hello Ronda and my fellow headachers, I'm 29 and have had a variety of headaches. The are no medications that help. I've resigned myself to just deal with the pain. I think the best medicine is support. This is the reason for this letter. I would absolutely love to chat with with some headachers. Please e-mail to ccma@greennet.net. I just love to get mail without getting bills.

Truely,

Cathy ccma@greennet.net


Hi,

I am 46 years old. I've been getting headaches for the past 5 1/2 years. Following is a description of the headaches I get. I get 1 to 2 headaches a day. They are almost always at night occuring within an hour to an hour and a half after I fall asleep. If I get another in the the same night it is usually about 4 hours later. I have gotten about 40 headaches during the day since my headaches began yet in the past two weeks I have gotten a daytime headache almost every day. The pain is always on the right side of my head. It is not thropping, it's an extremely sharp pain. I can stay lying down, I have to get out of bed. Staying in be only intensifies it. I take an Imatrex (50 mg) and a hot cup of coffee and it will usually go away in anywhere between 5 minutes and 2 hours. The pain is so intense that I can not cope with lights and sometimes it is difficult to walk (equillibrium). I don't get nausated. The right side of my neck gets very stiff. I can't tell if this is caused by the headache or the neck causes the headache. When the pain goes away it's usually gone instantly. I mean I can sit there and be in extreme pain and then in the next minute it can be gone - leaving the next still aching though.

I have been through all kinds of testing for this. It was discovered that I had sleep apnea which I have had an operation which corrected that - still got headaches. I have gone to chiroprators (alignments, massages), neurologists (EEG and medication), orthopedics (I do have scholeosis, and a torn rotor cuff), pain clinics (mental evaluation), and ENTs (operation on sinus and removal of tonsils), even gynegologists which resulted in a hysterectomy and estrogren- all with no help. I have been on numerous drugs - Imatrix being the only one that helps.

From what I've read most people get their headaches for days - I don't. I'm not sure about the intensity of mine but I do know that I have a bad back, I've had herneated disks and pinched nerves, and have discovered that I can tolerate a lot of pain. These headaches are so bad that I can't do anything. If they ever last longer than they do I won't be able to carry on daily activites.

I'm looking for others that may have the same syptoms. I guess the only thing that that may help is to realize I'm not crazy.

Hope to hear from you or maybe you can connect me to someone.

Thanks for listening.

Laura LauraSutli@aol.com


I have been getting Migraine Headaches since 1984. At irst, they were only once every 3 or 4 months, but as the years have gone by, the heacaches have increased in frequency and duration. Now, I get them on a monthly basis, and they can last anywhere from 1 to 5 days. My Blood Pressure shoots up to 190/130 during the headache. I do know that after I have been exposed to the sun for any length of time (i.e. driving during the post-dawn or pre-dusk hours, my headaches come on stronger. Unfortunately, I don't have much of a choice dealing with the sun, because I drive a School Bus, and have to drive during those hours.

Doctors have tried the following meds on me to try to control them:

Cama (asprin), Catapress, Cafergot, Fieorinal, Elavil, Amitriptyline and a few others that I can't remember...

What doctors have me doing now, is take Anaporx (Alieve) at the onset of the headache, then Imitrex (Injection) if the headache continues, and finally as a last resort Stadol NS. Normally one of the 3 takes care of the headache...

Warren warrenj6@acsol.net


Hi Ronda and to all headache sufferers everywhere! My name is Joni and I've suffered with both migraine and daily tension headaches for about 15 or so years. (I'm 41 years old). I have also been through the gambit, and I have also spent a great deal of time educating my self through books, etc. so I could get better at diagnosing my headaches. I'm certain I suffer from rebound headaches and that is going to be the main topic when I see my neurologist in January. He's a good doctor, very sympathetic and seems to know his stuff. It's just that, in spite of all the various medications we have tried, I still suffer greatly from daily headaches. I have been on Depakote, (an anti-seizure medication) that has had some results with people in decreasing the frequency of Migraines, for about 4 to 5 months now, and I have had somewhat of a reduction in frequency (from 12 to 15 migraines a month to 6 to 10) a good month being 6 or less, which I have yet to experience. But Imitrex tablets do work for me, it's just that there is only so much of that you should take, and only so often due to the blood vessel constricting properties of the medicine.

My biggest concern of late is my daily tension headaches, which I have had really for several years, but really bad the last 2 years or so. I have been taking Esgic-Plus (which works very well for tension headaches) for about 2 years, Fiorinal with an extra-strengh Tylenol (my doctor says aspirin mixed with Tylenol works much better), I take Elavil (100 mg.) nightly, a total of 1,000 mg. of the Depakote (these are the preventative medications, and the others are rescue medications. Since starting the Depakote (the biggest side effect of it is gastro-intestinal upset or pretty acid reflux, like heartburn) so my neurologist gave me a script for Zantac. So now that gets added to the pile. And for years now, I have taken a low grade (.25 mg.) xanax for anxiety which I have had since a teenager.

Both my husband and I are getting more and more concerned about all the medicines I am taking because I have been told by another doctor that none of them are water soluable which means my liver is having to break them all down and this can be stressful on a liver.

I have an excellent support system with my husband, son (8-1/2), and the most wonderful in-laws (just like my own parents). We're all concerned about the amount of meds, the lack of them totally working, etc. They say the only way you can determine if you're suffering from rebound headaches is to stop all the painkillers you take for a couple weeks, and see what happens! Yeah, right! What two weeks of my life am I supposed to give up to find out? I can't imagine not taking my pain meds daily and I also can't imagine going on this way. I'm afraid, confused and a bit discouraged as of late. I feel more confidence that I'll be able to get the Migraines in better check than the daily tension headaches. And I've also been told by my neurologist that some tension headaches can turn into Migraines. Yippee!

It does feel better to write to people that can understand and I would love to hear back from someone, anyone. Hang in there everyone!

---ddeckman@ix.netcom.com


I WAS TOLD FOR MANY YEARS HOW TO GET RID OF MY MIGRAINES AND NOTHING WORKED -----------------TILL NOW I WAS TAKING IMETRIX THE LAST FOUR YEARS ABOUT THREE OR FOUR TIMES A MONTH , WHICH TO ME WAS A MIRACLE DRUG AS MY MIGRAINES WERE USUALLY GONE WITHIN TEN MINUTES. IN APRIL I WAS FEELING LIGHT HEADED AND DIZZY AND FOR A FEW WEEKS THIS CONTINUED EVERY OTHER DAY AND AFTER TWO WEEKS I WENT TO MY LOCAL URGENT CARE CENTER WHERE THE DOCTOR CHECKED MY BLOOD PREASURE AND FOUND IT TO BE 199/98 SHE PRECRIBED A MEDICINE NAMED ATENONOL AND I HAVE NOT HAD A MIGRAINE SINCE . I WAS TOLD OVER THE PAST TEN YEARS OR SO THAT MY BLOOD PRESSURE WAS BORDELINE BUT NEVER HAD ANY IDEA THAT IT HAD ANYTHING TO DO WITH MIGRINES AS THE DOCTORS WOULD ONLY TELL ME IF IT GOES ANY HIGHER YOU MAY HAVE TO GO ON MEDICATION,IT WAS USUALLY 158/95. INOW CHECK MY BLOOD PRESSURE REGULARLY AND JUST YESTUDAY IT WAS 120/90 ATENONOL AND DIET CHANGE HAVE MADE ME MIGRAINE FREE FOR NINE MONTHS NOW ------------PRAISE BE TO GOD-------YOURS TRULY

---LEO SANCHEZ -AGE 43 RPFG66A@prodigy.com


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