Journal of Migraine Sufferers

Hi, For the past year I have been experiencing a tiny lightning bolt image in the corner of my left eye. My Opthalmologist diagnosed it as an ocular migraine. Of course, she knows that I suffer at least two migraines a month. In fact, I just got up from a 48 hour doozy. Anyway, I was wondering if anyone else out there in c-space has this occurance and what they were told regarding same. Thanks for any input.

---Linda dlm@montego.com


Case History:

Hi! My name is Sue and after a CT scan and an MRI and allergy test to rule out other things, I was refered to a neurologist. I went yesterday and after a thorough exam lasting almost an hour and a half He diadnosed my headache as Migraine.

I had a complete Hystorectomy a year ago and take Premarin .0125 daily. I was also suffering from anxiety and depression and was put on Prozac which did wonders for my moods. I had the headaches before all this but in the last few months they have become constant.

The Headache Originates in the back of my head on the right side about 2 inches in back of my ear. It causes a stiffness in my neck and makes it painful to rotate my head. It is there all the time and I get no relief from Tylenol even with Codeine. Sometimes the Pain moves up and around so that I also have it in my forehead and behind my eyes. I also experience a twitch and or tightness in my right eye sometimes. I have no numbness in my extremities but I do experience horrible itching. The location can vary from fingers to wrist to ankles and if I allowed myself Im would scratch myself raw. I do not have dry skin or a rash of any kind and topical itch medicines and benadryl do nmot work to relieve it.

The Doctor started me on Valproic Acid 250mg. yesterday and told me to take 2 Phrenlin before I went to bed and I'd wake up without the headache. Regretfully He was wrong. I'm supposed to take the Phrenlin only as needed for pain as it can be addictive which also scares the hell out of me. It is good to find someone to share this with and hope for some insight advise or just to know others have this same problem.

---curtis@ziplink.net


Dear Ronda: I have had migraines for 1 year now. I just turned 16 and have gone through the numerous tests and have been diagnois with Cluster Migraine, with aura. I see a Nuerologist. She is a great listener and really cares about what direction I want to go, as far as different medications. The Imitrex Shots help, but even if I take the shot at the first sign of migraine, I still have to sleep for hours to get releif.

I really don't want to go on a daily medication, I fear the side effects. At this point my migraines come in groups. I can go 5 weeks or more without a migraine, then boom I will have 7 "bad ones" in a spand of 2 weeks. I begin Bio-feed-back next week. I hope it will help. Also my Mom is learning about Herb's as a natural aid. She is still researching, but wants to try me on an Herb called "Feverfew" also "Ginko". Has anyone out there tried Herb's to prevent or releive migraine?

After reading some of the Letters on your Migraine page. I feel so sorry that there is so many people out there who have been hurting for so long. Sometimes I get really scared that these horrible migraines are here to stay and I will be suffing for the rest of my life. But I try to keep telling myself, An answer is out there, I just have to be smart, patient and determined to find releif...

Signed, ---Coping garrettg@intercomm.com


Hi Ronda and fellow migraine sufferers!

I started experiencing migraines when I was 15 years old. I did not know what was wrong with me. I thought I would go crazy. I have migraine aura where my vision is disturbed and then comes the light show=-the zigzag flashing lights for about 20 minutes and then the whopper comes!! I was on the pill and decided to stop. My migraines went away for about 10 years coming and going here and there-nothing serious-maybe one a year.

Then in my third pregnancy, I had a migraine for three weeks with aura on top of aura-which never happened before. I wanted to bang my head against the wall and literally cut my head off!! The doctor informed me that it would go away when I had the baby. This was in my 3rd month. So I only had 6 more to go-wow!! After the three weeks of migraines I started to get dizzy and off-balance. Again the doctor said this would go away after the birth of my child. WRONG! Julian was born healthy-and I was still dizzy and off-balance. So off to the doctors my husband and I went. I had brain scan on top of brain scan (MRI is no fun!!!) blood tests for every disease possible, ear tests, eye tests and even went to a psychiatrist. All said I was a perfectly healthy woman! Why did I not feel healthy. I have been to so many doctors and have had so many tests that I believe I can practice medicine now too!! They are only practicing, aren't they?

I got desperate. So, my psychiatrist knew a doctor from the U.S. who could give me 'sheep cell' injections. Don't laugh. My family came up with every joke imaginable. After the injections will you grow wool instead of hair, will you say bah! instead of speaking nomally.........

Well I did have the injections-extremely painless but really expensive. Ladies come here to Nassau, Bahamas to have these shots-movie stars, models, etc. because they are also supposed to rejuvinate you and keep you young. That is not why I had them done. I've had two injections in two years. One a year is sufficient. They did help for a little while but my migraines have come back. I take imitrex-but I find this medication encourages the migraines to reoccur a few days later! I am 40 years old and HAVE NOT had a hysterectomy! So it cannot be a hormone defficiency problem.

I have managed to live with my physical problems. I do not panic about them as I used to when they first began. The quality of life is not ideal but I have to grin and bear it until the time comes when I find a cure. I refuse to let this defeat me and deflate my hopes and dreams. I am a strong person (which I believe most migraine sufferers are) and it will take much more than this to get me down. Believe me, it is not easy, as you all know, but put your best foot forward and take it a step at a time. Things will get better. I would love to hear from you. I know what you are going through-you are not alone.

Take care and my best to all.

---Dolores dbl@batelnet.bs


I am a 35 year old male sufferer.

I am almost at the point of desperation. I have tried all the preventative treatments (currently Epival), but nothing helps. Imitrex causes me to feel like I'm going to have a heart attack. I have tried what seems like a million other prescriptions, the only thing that gives me relief is Stadol, but I cannot use that at work, or in the morning which is when my episodes usually occur. My doctor has given me Tylenol # 3, but I've taken so many in the past month, I need at least 4 at a time and then the relief is minimal.

I know from reading messages here that there are othe more effective relief drugs available, but because of the laws in Canada, ny physician (who I really do like and respect except for his lack of compassion with my head) absolutely refuses to prescribe anything but Tylenol and Stadol.

Are there any sufferers out there who might know of a better-informed, more compassionate doctor in the Lower Mainland of Vancouver, BC who could help me. If so, could you please EMAIL me : katie@uniserve.com I would be most appreciative of any help. Thanks

---Hans


WOW! I am not alone! I have had all kinds of migraines, from the a-typical to the classic to the cluster kind. I have been on all kinds of drugs: Midrin, Sansert, Cafregot, Imitrex, Depakote, Neurontin and of course the ever faithful Demerol/Phenegran shot. One particular kind of headache was extraordinary, it went like this:

Ringing in the ears, as the ringing gets louder, external sounds (like other people talking to you, etc.) fade away slowly. A tunnel starts to form in my vision; it's black on the rim and edges and violently red or white in the center. I get dizzy, colors reverse, suddenly, I feel like I am looking at the world as if it was a color negative from a set of photos.

Sounds become unbearable. If I can get to a silent place, the ringing in my ears is deafening. Amazingly, my hearing becomes VERY acute. I can hear things very far away, through walls, I can hear voices in cars outside, the sound of traffic from the interstate more than a mile away, the water in the pipes and the squeaking of the bell in the tower of the church across the street as the wind moves it ever so slightly (it has not been oiled in years, I guess).

My vision is awful and any light is excruciatingly painful. Ice packs behind the head from ear to ear only dull the pain, and once the vomiting starts, oral medications are impossible.

Suppositories are useless and if you think the headache is bad, the headache while you are going through the motions of throwing up with nothing at all in your stomach, (the dry heaves) is phenomenally worse.

I, luckily, have a very sympathetic and understanding neurologist. I am currently taking Neurontin 400mg 4 times a day as a maintenance medicine and use the Imitrex pills as a "bad" one comes on.. I have found that the DHE nasal spray works well occasionally, but completely stops my sinuses up and causes a day full of sneezing. I have taken the Imitrex shot once, and let me tell you, I will NEVER take that again. Has anyone else had a bad experience with the Imitrex injections? I am particularly curios about this.

I have found the headaches are not menstrual cycle related, they are not induced by any particular smell. I stayed on the anti-migraine diet of avoiding the typical no-no's like cheese, aged meats, avacados, nuts, MSG, etc. I was religious about this diet for a full six months, nothing changed. I figured if I was going to get the headaches anyway, and avoidance of these common triggers did not help, then I was going to enjoy all the foods I liked!

I have never gotten a hold over these headaches, and being from south Louisiana, I have grown accustomed to naming my headaches, just like hurricanes! Speaking of hurricanes, low atmoshpheric pressure does seem to instigate a headache for me, but not always headaches of the migraine intensity or pattern.

If there is anything I have not tried, please let me in on the secret. Until then, y'all keep the Demerol handy and try not to miss too much work!

Good luck to y'all.

---kate KMCLEAN@HNTB.com


Dear Ronda,

My migraines have been gone for 4 weeks now that I stopped eating soup for lunch and other foods that contain MSG. I even have not had a pre-menstrual headache. Until very recently, I thought I would have to quit my job, but now I have hope again and even some modest plans.

Two Dutch neurologists have proven that migraines originate from a gene-mutation, responsible for the Ca-channel functions in the brains. That explains exactly why MSG will invoke a migraine: it upsets the Mg/Ca balance in these channels and it also explains the urge to eat chocolate (magnesium) prior to an attack Maybe other substances such as cafeine, aspartamine als have an effect on the Ca/Mg balance.

I have had classical migraines for 15 years, starting in the back of my neck and then migrating (nice word) to the left side of my head piercing trough my left eye, teeth and ear and ofcourse accompanied by vomiting. Cafergot made things worse.

Also I have had loss of vision, loss of speech, seen beautiful auras and one time saw the great white light even with my eyes closed. In between headaches I feel drained and thirsty. Before a headache comes, I have an insatiable apetite, can smell things better, have a slurry speech, my face itches, I start yawning, am sensitive to light, and I feel like inside I'm being chased by something which I try to avoid. Usually I'm either very humurous and creative or very irratable before the headache.

The past 15 years I've seen all kinds of doctors, and tried each and every alternative medicine and regular medicine. I have found the worse thing the reactions of many a family member, friend, and collegue.According to them I: "dread dead-lines, don't keep promises, am boring, too stressed, too ambituous, mentally disturbed, selfish, avoiding work, unreliable, making up headaches as an excuse to get attention". I find it hard to forgive them , especially since I can "prove" that it was a physical disorer, running in both sides of my family. I'm disappointed that peole do not really believe until they see it for themselves.I'd be glad to offer them 50 grams of MSG for consumption.

Anyway, I read about MSG on your page Ronda, and as it seems, it will change my life. I hope and pray that this may help at least one other sufferer. To all of you reading this I wish you the best in each and every (difficult) situation.

---anonymous


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