Case Histories - July 1996 (2/5)

I am a cluster headache sufferer in Sydney Australia. I ONLY get headaches once a year, usually seasonally when it is cold. This correlation is very clear from the Canadian research. I also found some good info in the MedSearch from the Diamond clinic at Columbus Hospital, Chicago, and also C. Besta, Neurological Institute, Milan, and Dept of Medical Cell Research, Uni of Lund, Sweden.

Their findings particularly seem to relate to me.

I would be interested to hear from anyone who may have investigated MELATONIN inference: hypothalamus, etc.

One paper found reduced CNS levels of beta endorphin in cluster headache sufferers opioid system hypofunction: any clues?

One small tip I would like to pass on thru your service:

to reduce pain, try PRESSING FIRMLY JUST BELOW THE NOSE ON THE UPPER LIP - press firmly, even make small rotations, find the "sore spot" and press for, say, 30 secs. This seems to help with the pain.

I would like feedback on this from your page!

Thanks!

---Gary bigfeats@ozemail.com.au

I am a 28 year old woman who has been surrering with severe migraines for three years. During the past three years, I have been unable to work because of my triggers: perfume, cologne, clothes dye, cleaning solutions, hair spray, deoderant, deoderant soap, news print, gas fumes- if it has a smell, it gives me a headache. I also have quite a few food triggers but that isn't the real problem. My neurologist has me on Amitriptylene (150mg) and it helps some but not alot. I have two major side effects 1: short term memory loss and 2: weight gain (80 lbs in 2 years). That's what I said. I have applied for state Medical Assistance but they denied my claim - I am appealing.

How do we get other people to understand that a migraine is not like a regular headache and that it CAN keep people from functioning. I don't have a very supportive family either. Right now I have a really bad one but I haven't taken my medicine because I have a small case of food poisoning and can't keep anything down. I found a book through my library that has been a great help to me because it has a lot of answers to a lot of small questions like why can't I think or talk while I have a bad one, what's up with the neon purple squwiggles, and am I going crazy or is it deja vu? The book is called 'Migraine: Manifestations, Pathogenesis, and Management' by Robert A. Davidoff. This doctor is writing about his own life - he, his wife, and their two children are life long sufferers. It is book 42 in the Contemporary Neurology Series. I hope you can find it at a hospital library or it can be ordered from your local book store (about $85). I would love to go on but my head just cracked into about 20 pieces and now I HAVE to take some medicine. I will write again when I can stand to think.

---Kterer Kterer@aol.com

Hi Ronda! I just found your site out on the web and I have been engrossed in reading all the case histories for the past two hours (I'm not getting any work done today!) I think this is a wonderful idea and thank you for doing it. Unless you suffer from these you can't understand what people go through. It makes me so mad when someone says, "I can't believe you can't come to work because you have a headache." These people just don't understand what it's like and hopefully a few of those people will run across your site at some point and begin to understand that a migraine is not "just" a headache and until they have experienced the pain and suffering that are associated with it, they CAN'T understand.

My heart goes out to all those who have submitted their stories, to me a migraine is a terrible thing and I wouldn't wish one on my worse enemy. So to all of you out there that suffer - hang in there and hopefully someday, someone will find a cure-all for these damn things.

I suffer from server migraines and have since I was about 13 years old, I am now 25. I have been on several different medications (Supatriptan, Midrin, Caffergot, Ergostat, Fioroset, Phenergran, Corgard, Seldene, Propanolol, Ibuprofen.) Then there are times that the only thing I can do is head to the ER and get a shot of Demerol or Darvoset. Currently I am taking Fiorinol 3 w/codeine along with Phenergran, this has seemed to work for me if I get it before the pain starts, which isn't always easy. I always get warnings signs before mine start, but they don't give me a great deal of time to react - once the warnings start I have about 10 minutes to get my medicine.

The first thing I notice is the tips of my fingers go numb and the numbness seems to take a path up one arm and into my shoulder and then my neck and finally my face, once it reaches my face, I know I'm done for - may as well lay down and let it go. Then my vision goes, usually one eye, then the other to the point that I am completely blind, that's when the pain begins - right behind one eye and it's just a piercing, throbbing pain. I can't look at light and noises bother me.

After about an hour or more of the pain comes the nausea, which seems to make me feel better (strangely enough). Sometimes I find my self trying to make myself throw up hoping it will make me feel better.

The length of time my migraines last are very inconsistent. Sometimes I can get one, go to bed and sleep for a few hours, get up and it's gone, other times they last for days, there really isn't way to tell how long I'll be down, but when I get one, I am completely incapacitated - I can't work, I can't drive, I can't eat, I can't do anything except lay in bed and cry and try to get to sleep.

Missing work is the most frustrating part of it, I wish there were someway to continue to work, but I can't. Fortunately, at my last job, my boss was a migraine sufferer also, so she understood. Now I'm a contractor on my own and if I miss work it really hurts, because I don't get paid, so now it's even more important to find something that will allow me to continue working.

I've found that several different things trigger my migraines. Hot Dogs are a big one, when I was younger, my brother and I lived on hot dogs - now I try not to eat them that often. There is also an ingredient in certain shampoos, conditioners, and hair products called Salycilate that is known to contribute. I know that Pantene hairspray contains this, and I found out about it the hard way. I started using it and I had a migraine everyday for a week, until I finally went to the doctor and pinpointed what was different about that week than others and the only thing was the new hair spray. After seeing the ingredients, my doctor said that Salycilate was the culprit, so now I have to be careful when I buy hair products, perfumes, makeups, etc that they don't contain this.

Another factor to mine is stress. I don't handle it well. The time that I was having these 1-2 times per week was when I was in a job that I was unhappy with, my boss and I could not get along, he wanted me to do things that I didn't want to do, etc., I would go home from work crying every day. It got to the point I was seeing my doctor more than I was at work - he finally told me to get out of the job before I had a nervous breakdown. I finally did leave and after about 3 or 4 months the migraines subsided - not completely, but I wasn't getting 1-2 per week.

Then there is the birth control pill. I have no problem excepting the fact that this contributes to migraines, but I don't think in my case this is the main cause. I wasn't on the pill in 7th grade when these began, I did not start taking the pill until I was 20 years old and I only took it two years. My doctor and I went several rounds on this issue. Even when I went off the pill, the migraines didn't stop or take a dynamic decline in occurrence. I have went back on the pill in the past 3 months, and they haven't increased or decreased in occurrence.

My last migraine was Tuesday and I'm still a little groggy from it today. I ended up going to the emergency room about 3 pm that day for Demerol and the effects of it haven't worn off yet. I still have a faint throb behind my eye and it kinda feels like it might come back, hopefully it won't, but I have my medicine with me and I'm prepared.

That's my story, thanks for listening.

---Criss Gibson gibsonc@wavetek.com

I would be interested to hear from anyone who may have investigated MELATONIN inference: hypothalamus, etc.

One paper found reduced CNS levels of beta endorphin in cluster headache sufferers opioid system hypofunction: any clues?

One small tip I would like to pass on thru your service:

to reduce pain, try PRESSING FIRMLY JUST BELOW THE NOSE ON THE UPPER LIP - press firmly, even make small rotations, find the "sore spot" and press for, say, 30 secs. This seems to help with the pain.

I would like feedback on this from your page! Thanks!

---Gary bigfeats@ozemail.com.au

Hi, my first time on the net. I started suffering from migraines when I was about 12/13 years old. My maternal grandmother suffered from migrains, my mother has suffered from migraines and myself and my sister suffer from migraines. I have been to see a neurologist about 13 years ago - he gave me some kind of medication that I was to take everyday. Being only about 20 years of age at the time, I didn't want to spend the rest of my life takine a pill everyday.

My migraines affect the left, front part of my head, causing me to vomit, causes some loss of vision in my left eye and virtually leaves me laying in a dark, quiet room praying for the pain to go away. I've tried many over the counter aspirin, actiprophin, ibeprofin, etc. I've also asked my doctor if he had heard of anything new developing with medication for migraines and always received the same answer.

In the fall of 1995, I ended up going to a chiropracter who started me on acupuncture. Within half an hour, the pain was completey gone and I was completely relaxed. I went twice a week for about 4 weeks and now go maybe once every two or three months.

I've been keeping track of what I think seems to triger my migraines and I've discovered that when the weather is changing I can start to feel a migraine coming on. I then came to the conclusion that maybe when the barimetric pressure changes I get a migraine. I've started to keep an eye on the barimetric pressure and noticed that when the pressure would change anywhere past 101.whatever, i.e. 100. or 102, I would get a migraine. I've also noticed that I have a very sensitive nose and can smell things that most other's can't, i.e. can smell when going to the highway by a field that has recently been sprayed with pesticides. Also, the smell of fresh paint, gas, etc. gives me a migraine. I also know that MSG, red wine, give me migraines (not all the time though). So, I'm not sure if I have food allergies, smell allergies or what.

I would really like to know if anyone else has some simple and helpful suggestions on how to get rid of pain. My headaches usually start slowly and I can catch them on time, but it's the ones that hit so fast, you have to wait for the medication to kick in which takes usually half hour to an hour and by then, it seems too late. Thanks for listening and hope to hear from someone soon.

---William R. Campbell wcampbel@sk.sympatico.ca

I have had migraine my entire life. My parents both had migraine, and each of my sisters and my brother have migraine, as well as my two children. I used to have one or two migraines a month, but have had them every day in the last year and a half. I have tried Stadol (makes me very depressed), toradol, demorol, and just about any other pain killer.

I no longer use any except on the rare occassion. I have tried Imitrex, DHE, and a host of others including propranolol, and Sibelium. Nothing works. At present I am trying Lithium, but I think I will have to go off of it as the side effects are horrid. I have been off work for over four months, and at present cannot foresee a time when I can return. As with any chronic problem, it affects my work, my enjoyment and flows into my family life. I have tried to find any triggers, but they are so wide that I cannot seem to help. Any physical activity at all is the cause of days and days of pain, with no painkillers that help. Hopefully, someone will find a way to help us.

---Cindy F. f.fedaktsk.sympatico.ca@sk.sympatico.ca

I have had migraines for 14 out of 21 years. There is a long history of migraines on my mother's side of the family. My mother and I never knew that there was anything that could bring any relief at all. The doctor's were of no use. I was taking 1600mg of motrin up to four times a day and they just said I'd grow out of it.

When I came to Washington, DC and was able to get some decent insurance, I learned about Imitrex (US). Right now, I take a shot and several tablets with me where ever I go. I'm currently getting about four or five a month. I hate taking the shot because of the side effects but it is better than a headache. The pills work fairly well if I take them in time. Since I almost always have a headache, I have to be alert to when they cross over to a migraine. I was on Caffergot and the Propranolol. The Caffergot didn't do a thing and the Propranolol made me horribly depressed. I'm scheduled to see my doctor again next week and I have a list of other possibilities. Does anyone have anything that they are taking daily for preventive measures that works well?

It's sad to see that so many people are afflicted with this curse but it's nice to know that you're not alone.

---Julie O. elindsay@burns.nlc.gwu.edu

Hello, my name is Ken. I'm 26 years old. I had my first attack of migraine 3 years ago. One day, while I was shopping, I suddenly completely lost the left half of my vision. I didn't know what it was. It was as if I had been staring into the Sun. Then 15 minutes later, the headache came, and I started feeling sick. I talked to my family physician, and ended up in hospital. I was very sick for about 10 hours and then I was perfectly well.

My next attack was treated with Ketogan (Morphine) by adoctor. NEVER do that - true, it did relieve the pains almost completely, but it left me weak for several days.

I am currently treating my attacks with Imigram (Sumatriptan 500mg, orally), and it does work somewhat. My attacks only last 4 hours now.

Resently (7 months ago), I got the idea from a rather old book, that there might be a connection between low blood sugar (possibly due to overproduction of insuline) and migraine. The theory is that most migraineurs have an overproduction of insuline. Therefore they should avoid eating refined sugar, and they should never go more than three hours without some kind of (sugar free) meal! I am not absolutely "sugar free" myself, but I never eat anything containing sugar on an empty stomach now, and I DO try to eat every three hours. I used to have migraines every month or so, now I haven't had an attack for 7 months. Have anyone else tried this "cure"?

--- K. Andersen KENAN@MATH.KU.DK