Case Histories - September 1996 (1/4)

My father had migraines and tried everything under the sun to get rid of them. It turned out he had diabetes and that diet seemed to help (yes, I've checked out negative for diabetes, but I don't think I could follow the diet--to eat I stumble into the kitchen, grab something and then crawl back into bed. We have no cook). I had my first migraine when I was 29. I talked to a neurologist who gave me wise advice that I promptly forgot. He said "Never take birth control pills" I paid no attention because my husband had a vasectomy. However, 2 years later my husband left me and I met my second husband and started taking birth control pills. Since then my migraines have been a horrible headache(:-).

I worked as long as I could (12 years) but they got so bad I had to quit. My biggest trigger is bright sunlight and I live in Austin in which bright sunlight is endemic. I would like to move to Seattle, but my husband won't go. I don't want to force hime to go because if I didn't improve or he hated his new job, etc it would be my fault.

I want to get a masters in Epidemiology, but the closest classes are one and a half hours from here. They finally admitted me to The School of Public Health but with these headaches, I can't even keep up with my mail let alone a class.

I've tried all the heart drugs, accupuncture, biofeedback, feverfew, chiropractors, physical therapy, hypnosis, TMJ treatment, different pillows, different beds etc. I take vitamins and exercise almost every day. I even bought prescription glasses that were supposed to block blue light.

I give up, but I am interested in what has helped anybody else. I'm probably willing to try it.

Thanks

---Susan Kollath jkollath@onr.com

Ronda,

I was very happy to find your page dealing with migraines. I have suffered from the pain of migraines from my very first remembrance as a child. It is very comforting to find so many testimonials from others who have had much the same experience.

Today, I am 45 years old, married, and have three grown children. I thank God that neither my wife or my children have had to suffer the pain that I have endured over the years.

I was always very active in sports while growing up, and even into my late twenties, being a member of an amateur baseball team. Yet, I always just accepted the fact that there would be times both at work and play that I would be incapacitated due to my affliction. Thankfully, I've always had understanding people around who could sense that the pain I was going through was different from your "normal" headache.

There were many times as a young boy that I would be out playing with my friends and start to feel a headache coming on. I would fight it as long as I could, but ultimately it would make me nauseous. I would make an excuse that I had to leave and then find a private place to vomit. And like so many others with this problem, I wound up spending too many hours in a dark, quiet room with a pillow over my head until the pain subsided enough so that I was sure I would survive after all.

Fortunately, as I have gotten older, the number of migraines I endure per year has decreased. For some reason, I may go several months without having even one. Then, I will seem to get into a period where they will happen maybe once a week for a short while, and then diminish to perhaps once a month before they disappear again for a length of time.

In every case, I can always feel a tightening at the base of my neck. When I turn my head at a particular degree or direction, I can hear a loud snap inside my head. Oftentimes, even my spine and shoulders will be so tight that I will swing my arms in a circular motion just to try to loosen things up, and, once again, my spine and joints will make a cracking sound.

Some days when I get up in the morning, I awaken with a headache. Other days, I may get an early warning that a headache is coming on because my eyes are very sensitive to light, even before any pain starts.

I have also noticed that many of my headaches coincide with a change in the weather, especially, if we've been experiencing relatively stable, warm weather pattern for a long time, and then a sudden cold front arrives. Or, an extended cool, wet pattern seems to produce a lot of headaches for me. Days of high heat and humidity can also give me problems. Under those conditions I will wake up with a lot of sinus pressure, and feel the need to keep blowing my nose, even though I may not be producing a lot of mucous. Many times I can come out of those situations fairly well, and get some relief from ibuprofen and decongestants, but other times it will develop into a full blown migraine event.

In reading the other case histories, I can say that one thing I don't have in common with others is the fact that I haven't taken a lot of different drugs to try and solve my problem. For one thing, I've really never consulted with a doctor who claimed to understand migraines. Most of the doctors I've dealt with have all attributed my headaches to sinus problems - which I do have - but cannot account for kind of headaches that make you think the end is near!

I finally explained to the sinus specialist that I've been seeing that I didn't think that my sinus problems were the whole answer to my headaches. As I described what happens to me he seemed to agree, and suggested that the next time I come back he will probably direct me to a neurologist. In the meantime, he prescribed midrin to treat my headaches. After using it a few times, I can only say that its given me limited success. On one occasion it worked very well, but in most cases I would say it just makes the pain more tolerable.

I think the thing that would give me the greatest satisfaction, is if I could find a treatment that I could count on day in and day out to work for me. Like anyone else, I often project a few days ahead, trying to plan my important events so that I can accomplish everything in an oderly manner. After doing this, the fearful thought always arises, "What if I get a headache that day?" Such a concern doesn't do a lot for your confidence. That's why I need a reliable treatment method.

I would appreciate any comments or suggestions from anyone who can identify with my particular symptoms. And I do appreciate being able to air my experience in this great forum. Thanks!

---davel@bmtc.net

Hi Ronda! Boy am I glad I always have your Migraine Page to look forward to. Now that I have my own computer I could actually communicate with someone! (I always used my sisters). I also am a migraine sufferer, I am 35 with 3 kids, husband, and dog. I've had migraines since the age of 10. But only in the past 3 years they have been coming more frequently (about 4-5 times a week). The only thing that helps me is daily shots of Demerol (You heard right daily!!) sometimes even 2 times a day!! Believe me when I tell you I have tried everything under the sun; I was even the guinea pig for the new drug Imitrex, which did not work for me at all!!! The only thing left for me is pain relief and after carefully weighing all the pros and cons I came to the conclusion that I would rather have pain relief and take my chances of becoming addicted (Your not addicted if you take it for legitimate reasons) than to suffer with daily migraines. I have been told that "don't take any pain relief, suffer it through". And of course the advice is always coming from a non migraine sufferer!!!! It took a long time for my family to understand I did not get sick on purpose so I could spoil their day. I would give anything if I could get rid of the migraines. I really don't enjoy giving my self injections daily, but if thats what it takes to help me, then thats what it is. I've missed so many special occasions in my life and the most important one was the death of my 5 month old son who died. On the day of his funeral I had the WORST migraine of my life (I literally slept on the bathroom floor, so I would be close to the toilet). But the funeral had to go on without me. it broke my heart the next day when I awoke migraine free and as if I never even had one the day before. I had to quit my job and decided to apply for Disability benefits, with the help of my great Dr. I have been on a disability pension for 1 1/2 years till the age of 65. I think its about time that migraine is recongnised as a disabiliy because it is and a very big one at that.I urge all fellow migraine sufferers to apply for disability and even if your denied appeal the decision till you win!!!!!! And also for those of you that get called 'druggies and junkies etc... change Drs. your Dr. should be there for you and to help you in any way he an even if he has to prescribe you narcotics, there is nothing illegal about taking medicine for pain relief, and sometimes they have to be reminded of why they became Drs. in the first place.

Glad I could share my story with you, I'll leave you my Email if anyone wants to email me.... Take Care,

---Shelley spetruzz@direct.ca

Ronda,

Found your page recently. I am a 38 year old female suffering from Migraine both with aurua and without. I am a patient of the Ford Headache clinic in Birmingham, AL. I found Dr. Ford to be the best of all the doctor's I have seen. He actually listens to you. He also suffers migraine's. I have had them all my life and now my two sons unfornualtley are experiencing them also. I have migraine at least 3 times per week. On my good times I can go maybe 10 days without one. I am presently taking DHE 45 injectables. I've tried everything else you could possibly imagine. I am allergic to imetrex and had many side effects from all the other med's I tried. DHE works if you take it at the very beginning of symtoms. I also have been looked upon as just a drug seeker. Until I found the Ford Clinic, I have been taking Staydol injections at the ER. Needless to say it helps allot with the pain but also causes rebound. I want desparatley to find a support group on-line. I am new to the internet. How do I find Alt.support.headaches.migraines? I've tried several search idea's. I pray you are headache free today. I am not. Please don't let my e-mail address fool you, it's my husbands. I am currently in the process of getting my own. Please email me at jay@ebicom.net

---Rebecca

Hi, I'm a 35 year old women with a history of migraines for about 15 years. Sometimes as m any as once a week sometimes as few as 1 a month. They definately have a hormonal component - i.e. with ovulation and menses. Imitrex has worked perfectly for me - no side effects and rarely do I need to take more than one shot (pills work fine too). I have a question for anyone who can answer it or even speculate on it - I've been pregnant and am now nursing a 7 month month old baby. during this time I'[ve had fewer headaches - with pregnancy I just toughed it out, with nursing as I quit all caffeine (to avoid a wakeful baby) and have quit dairy products since my children tend to be sensitive to dairy in my milk, my headaches while still happening have been very light and less frequent. I've been able to abort them by taking 1 extra strength Tylenol and 1 ibuprofen. Its worked magically and I thought the problem was solved (i.e. no caffeine and no dairy were the solution). However!

I have had 3 KILLER headaches, each 2 weeks apart and nothing has changed. Its possible I'm beginning to go through a hormonal shift (menses returning) or postural problems associated with lugging around my 21 lb son or ???? any ideas? I checked out the Migraine zine and I can tell you its definately not caffeine withdrawal!!! Also, does anyone know about the safety of Imitrex while nursing a baby? I've had a really hard time getting any info on it. Any help will be appreciated. I'd also like to correspond with any women who have migraine related to hormonal cycles. Many thanks to all on this forum - its great!

---Felicia lowery@bendnet.com

I am a 31 yr old female. I have two children -a girl 11( She also suffers from migraines) and a 3 yr old son. No preventative medicine that I have ever taken has stopped a migraine. And this past Monday everything changed. I am scared to death. After having a severe headache for three days, the nausea, the blind spot and the numbness and tingling in the left side of the face and arm hit me. I knew it was going to be a bad one. Apparently I had a siezure, I bit my tounge, was incoherent, combative, and generally appeared drunk. There is a time frame of approx. 45 minutes that I "lost" I have no memories of what happened to me, even now 4 days after the "attack" I have trouble with remembering simple things like the date or even the season.

I was taken by ambulance to ER .CT scan showed nothing amiss.I have some more tests coming up.But this new episode changes everything.I am not sure who I am now. I don't know what my limitations are anymore.I can identify with a lot of your corresponders about being seen as "drug-heads" because of our search for relief. I stopped looking for help and just suffered though the best I could. Fortunatley I think that the neurologist I am seeing is one of the best choices I have made in years.

And as for the jerk who wrote that nonsensical baloney in MigraineZine- May the Good Lord see fit to show you what a migraine really is...

---Suffered in Silence A.Upchurch@nando.net

My name is Scott and I am a 41 yr old male. I live in calif, near los angeles. I started with migraines 11 yrs ago on the left side of my head. about three yrs ago, i had chronic sinusitis, which lead me to another migraine behind the right eye. The other migraine never came back. I had sinus surgery then, but the migraine continued. The neurologist said, "well, if its sinus, go see ur sinus doctor." The sinus doctor (ENT) said, "well, if its migraine, go see your neurologist."

I actually put up with this for the last three yrs. Lately, my migraines were VERY frequent. One to three shots of imitrex per day for about 7 weeks (please, no comments on the third shot of imitrex within a 24 hour period...we do what we gotta do!). I decided to see yet another neurologist, so I called UCLA. I was given a wonderful neurologist...she is the head of the migraine/headache program there. The best part is, she is a migraineur!!! What a difference. A doctor who actually believes my crazy headache stories. And, she actually wants to keep trying different things in order to stop them!!!

She LISTENS. I have found that to be the key word in my search for the migraine answer. The doctors have to LISTEN to you.

She sent me to another UCLA doctor who is an ENT. He also LISTENED to me. He soon agreed with me that my migraines were sinus related. The cat scan showed my left sinus was blocked. He suggested surgery, which i had 5 days ago. Ive had a lot of pain from the surgery, but time will tell if it works. He tried to "block" a nerve in the right sinus which he thought was a contributor to my migraines.

Well, if this doesnt work, I will continue the search. I know my doctors will continue...and that is important.

The message I would like to send here is......Dont settle for the status quo. If you have a doctor who is not helping, or LISTENING to you.......GET ANOTHER DOCTOR!!!!! They are out there...you just need the right one...

---Scott S. riversic@ix.netcom.com