Journal of Migraine Sufferers

I've put up with migraines for 10 years ever since I had a tubal ligation. Last Sept. I had a hysterectomy, too many cysts just waiting to turn cancerous. I'd had several D & C's and they just kept coming back. I always blamed the headaches on the estrogen cycle because they were always related to the periods. When I started the change of life and the periods were no longer regular, the headaches started to diminish somewhat. After the surgery last Sept. I was headache free for quite some time. It seemed that being on one level of estrogen was the answer. But now, they are coming back, with no pattern at all.

Before, the dr's. had tried every preventitive there was, but nothing helped. The only thing that got rid of the headaches was the imitrex shots, and pills.

I was really hoping that the surgery would get rid of them for good. But now it doesn't seem that it has.

I have read that sometimes the headaches are caused by an imbalance between the estrogen and progestone. Does anyone have any experience in this therapy. After all the meds. tried, prog. is the only one I haven't used!

---Sue Conant raconant@eee.org


I started getting migraines when I was twelve or thirteen, living in Hong Kong. I had about two, sometimes three a week, for about five years (since then fewer). The blindness would always grow from a central spot into a spiral filling out into a full blindness on the right side of my visual field, a numb hand, nausea and total inability to think straight. My vision has always taken weeks to fully recover on the right side, and for those five/six years, I just lived with lousy vision. The pain was always intense and would stay for a couple days, but I seem to be unusual in that my headaches are always DIFFUSED over my entire head, rather than being felt in just one place. I wonder if I'm better off or worse than the rest of you. No pain medication has ever had the slightest effect, so I don't bother taking anything any more. In high school however, I noticed that if I ate some white grapes immediately after the premonition the headache would abort itself. Now, it's hard to separate the autosuggestion from the grapes, but still, give it a shot. They worked pretty well for me. I never use them any more though. I get nostalgic when a migraine comes. Call me stupid, but I find the altered perception kind of fun. I ignore the pain as best I can and focus closely on how my perception and thinking have become skewed. Works better than any pain killer ever did, and it's fun too.

High doses of inderal is a nasty nasty way to live your life, but I was migraine free for a month. It's a heart medication. Don't go there. I stopped taking all pharmaceuticals many years ago, and try to stay conscious of my diet. I try to

1)avoid a high baseline level of fat or caffeine in the blood

2)avoid things that can trigger/activate that bad blood, like EMULSIFIERS or MSG. Anything made by frito-lay is instant death.

---ncmealy@ix.netcom.com


I've been suffering from "classic migraines" for about 20 years.I first started getting migraine symptoms when I got pregnant with my first child and they continued from that point on. I did have two periods of time when I was basically migraine-free. The first time the headache took a leave of absence was when I was 28-33 years old. At that time I wasn't taking any type of medication. When the headaches started again I would only get two to four a year but the symptoms intensified with the visional aura lasting from 30-40 minutes, unilateral numbness usually affecting my left side for up to 30 minutes, disorientation, and then the headache. With the headache I also had photophobia, nausea and intense head and neck pain. This would last about 24 hours and when the pain had substantially subsided, my whole head would be sore; even to the touch.

The second time the headaches disappeared for about 3 years, (age 37-40), and again, I was not taking any medications during this time. I'm now 42 and have been on continuing medications for a couple of years now consisting of Elavil (25 mg.), and Propananol (160 mg.) daily. My symptoms this time took on a different pattern. I would get them in "cycles" of daily for two to twenty days consecutively, consisted mainly of the visional aura which would last up to 45-60 minutes, very occasional numbness and a headache which never was severe enough to require anymore than an injection of Flexeril, 30-60 mg. IM. These cycles would be triggered by the slightest weather change, amount of sleep I had, exposure to bright light and menstrual cycle. Five months ago I was placed on a hormone, Aygestin, for a gyn. problem. My blood test revealed no hormonal imbalance but my doctor wanted to see what the Aygestin would do for the problem I had. I haven't had a migraine since I started the hormone therapy. Not even a slight headache.

I have two interests in this area. First, have any studies been done giving migraine sufferers hormone therapy when no imbalance is indicated? Secondly, I work in the medical profession and in the course of my work, I've become aware of the fact that most of the women being treated for migraine symptoms also have mitral valve prolapse, as do I. Is there any research linking these two conditions? If not, I feel this warrants a formal study as I've seen this too often to be just coincidental.

---Heather Start rpdjohn@earthlink.net


Dear migraine sufferers,

20 years ago, after 5 years of almost daily suffering from classical migraines, I went to see a homeopath. He was most adamant that he could cure my pain. "Take this tablet twice a day and you will be free from suffering". 8 glorious month went by without a single attack and I was in heaven. Brilliant! The tablet was called Biodoron and the nice thing was that it had no side effects. Then I stumbled over a medicine encyclopedia. Curious about what I was taking I looked it up and to my big surprise it said: Biodoron, placebo, tablet consisting of honey and chalk. Useless! That same day my migraines returned with full vengeance.

Good day, my name is Fred J. Schroer and I am a Dutchman living in Beirut Lebanon. This experience made an immense impression on me. Of course a honey tablet could hardly have stopped my migraines so what did? It must have been this remarkable homeopath and his convincing rap that tricked the migraine into hibernation. So how could I get this monster back in his cage? I had done it once so I should be able to do it again, but how? I was angry. At myself for looking in that stupid book and at the migraines for destroying my life.

Then one day as I was feeling pretty good migraine struck again. Blind spots whilst reading the papers, the usual announcement. The aura would show itself soon. The monster was on the loose again and soon it would attack. I knew it; I had been here before, many times. I put my head in my hands and started to rub my temples with my fingertips. In my head I repeated the following mantra: "GO AWAY… GO AWAY… GO AWAY… YOU F#%I^& B@$!@*%! GO AWAY… GO AWAY… GO AWAY etc. This was war. After 45 minutes the aura had finally grown too big for my eyes to see. Here I paused. I was exhausted and my temples were sore but I had put up a fight and I was proud of myself. To my surprise the headache that followed was not full blown. I could function with the help of a handful of aspirin. The next day I woke up with little pain, not more then a slight hangover after a late night round the town. A couple of aspirins were enough to get through the day with very little pain. A bloody nuisance but still a lot better then I was used to. The following attacks I treated the same way with the same results. Had I mastered the monster or at least tamed it or would it show its ugly face again as it did after the Biodoron revelation?

2 years went by and so did many migraines. The good thing about 3 migraines a week was that I had plenty of opportunity to perfect my new method. At this point I did my second discovery! All that rubbing would leave my temples extremely sore especially the times I had double attacks. My aura would then start in the middle of my left eye and slowly grow bigger and bigger until after 45 minutes it would be too big for my eyes. Whilst waiting for the pain to come I noticed the aura coming back in from the outside slowly getting smaller. I was sore and my arteries were so swollen that I could easily feel them pulsating away in my temples. My arms and fingers were so tired that the only thing I could do during the second attack was just to administer pressure on my temples. I concentrated on the swollen arteries and pressed in the following sequence. 10 heartbeats closed, and 1 heartbeat open, 10 heartbeats closed and 1 heartbeat open etc. I was afraid to block the blood flow for a longer time because I was worried that I would suffocate my brain doing it. After another 45 minutes the aura disappeared in the center of my eye. One and half-hours I had been working on my massage. I had some pain from the first attack but I was concerned about result of the second one. The pain however hardly increased and a couple of aspirins were all to keep the pain bearable. I consulted my doctor about the dangers of blocking the blood flow in what he told me was the Artery Temporales and he told me there was no danger because these arteries are superficial and don't supply the brain with oxygen, just the muscles outside the skull. I was relieved.

This was 18 years ago. In those years I perfected my method to a simple pressure technique on the Temporal Arteries from the very start of the aura until the very end. This was another discovery I made. Any pressure before the onset of the aura or after it disappeared outside the eye was extra work and did not influence the result at all! This was a wonderful discovery because I knew now that there was a definite time frame that I would have to concentrate on the pressure. This was great because it was quite exhausting to keep the pressure up, so to know that after 45 minutes I would be free, motivated me every time again.

The Temporal Arteries in the temples are in many cases not easy to find especially in people with lots of hair and only intense rubbing will make them swell. I looked in a medical encyclopedia and found that they are running from the neck up to the front of the ear. Above the ear it branches out to the temples and the forehead. With my fingertips I followed the artery and found it pulsating strongly next to the ear hole on top of the cheekbone. There is a dint in which you can find the artery easily. I now moved my pressure points to the new location and decided to block the artery altogether for the entire aura. The next migraine I applied my new method and to my great joy, this place was even better. The pain was so little that only shaking my head violently would remind me of the attack. It was still tiring to administer the pressure for 45 minutes so every so often I had to give my arms and fingers some rest and let the blood flow. These interruptions in the pressure do cause some pain I believe, but limited.

Of course I went to my neurologist to tell him my discovery but he was not impressed. He told me he was pleased for me but that he could not explain my experience in medical terms. Again the blockage was no problem and he sent me home saying that if this worked for me he was happy. I think his happiness was more caused by the fact that I didn't beg for opiates than his interest in my method. So much for doctors!

Three months ago I found Ronda's page. Reading all these stories brought it all back to me. I remember the crippling pain, the disorientation, the vomiting, the loss of memory and the constant fight with the not understanding medical world. But nobody has mentioned my method. I looked it up in all the medical journals and found to my surprise an article in the "Annals of Neurology", Vol. 19, No5 from may 1986 page 515. It describes a test done on 15 people with classical migraine using almost the same technique as I had developed. The test was done by Dr. Stuart A. Lipton at the Harvard Medical School, Beth Israel and Children's Hospital in Boston, MA and had a surprising 81% success rate, more then any medicine has ever done. Still as far as I can tell no follow up was done. Why not? And why doesn't any neurologist ever mention this? Don't they read the literature or do they just not want to know? Very sloppy! It makes me think that doctors like priests should have a calling instead of a hunger for social status and a large bank account.

6 months ago I instructed 3 people on how and when to apply the pressure, one of which was a doctor friend of mine. All three had remarkable results. The doctor was so confused that he wasn't sure if he had really suffered a migraine or just a very minor one. We all know better now. Temporal artery obstruction is a method that is worth trying. It requires no monetary investment; just a lot of stamina and determination, which I do believe all migraine sufferers have after years of putting up with migraines. I myself have not seen my migraines disappear altogether, although they have reduced dramatically from 2 to 3 a week to an average of one a month. This, I can only say, is still a nuisance but one I can easily live with.

Finally for the people who have no auras. Most of you have started off with one problem. Migraines. However, years of medicine intake has created a second problem. Addiction plus the side effects of heavy duty painkillers are sometimes worse then migraine itself and can make it hard for you to tell which sensations are caused by migraines and which by medicines. I can only advise you to monitor yourselves carefully and to try to find out if you receive any warning resembling an aura. Numbness, blurry vision, a painful spot on the scalp that hurts etc. 30 minutes before the onset of the pain might also be a time to massage your temples to stop the pain from coming on. This is hard for me to say because I only suffer migraines with the aura so it is very much up to every individual to experiment for him- or herself. I can't help believing that the key lies in the blood supply through the temporal arteries during the time before the headache starts.

This has been a very long post but after reading all your letters I felt obliged to share my method with you. It would be criminal not to!

If you have any questions about my method feel free to contact me by email. My email address is: fredsc@t-net.com.lb. You can also reach me by fax on number 00-96-1-746928. Your reactions are very welcome as I am, together with my doctor friend, conducting an investigation into my method. You would help me enormously if you could send me your experiences with my method. To get a proper impression, I need all the info I can get. Good or bad. Even better it would be if anyone could report results of my method being successful with other types of migraines.

I wish all of you as much luck as I had finding your solution.

---Fred J. Schroer


Ronda

My name is Patti, I have had migraine headaches for over 20 years. I, too, have been subjected to doctors who think anyone who needs a pain pill must be a drug addict trying to get nacotics. Maybe sometime someone will invent a medication to give a migraine. It sounds cruel, but it may be the only way some doctors can learn to understand just what kind of torture they really are!

I have been down the medication trail for a long time, and I'm grateful that I can take Imitrex without bad side affects. It does seem as though the Imitrex is not as helpful as it used to be. I was interested in more information about the nasal spray form of Imitrex. Is it available by prescription in the US?

Also, I just read today on the PharmInfoNet about a new medication they came out with in November, 1997, called Zomig. It must be related to Imitrex, because of the similarities. Imitrex is Sumitriptan and Zomig is Zolmitriptan. The name of the article is "Focus on Headache", dated January, 14, 1998. Sounds hopeful, wonder if any doctors in our Small Town, USA, have heard about it!

This is my list of helpful hints:

1. Get lots of sleep. Try not to change your schedule too much.

2. Try very hard not to grit your teeth, even when it hurts really bad.

3. Try biofeedback to help you relax, and gentle massage in the neck area can be wonderful, especially on a regular basis - like two or three times a week.

4. Avoid certain foods that are known to cause migraines, such as chocolate, wine, MSG, yellow dye #3, candied fruits, aged cheeses, and that fake sweetner that I cannot spell.

5. If you can take Imitrex, take it as soon as you know it's a migraine.

6. Midrin (generic I.D.A.) can be very helpful in keeping a stress headache from going into a migraine.

Sorry, I didn't mean to go on, but I have had more migraines than one could count. Experience with migraines is something I would give up if I could, but if any of this helps anyone, then some good has come from the experience after all.

My Email is pmr@csonline.com

Thanks for listening.


Hi, my name is Erin and I am in grade eleven and I've suffered from migraines since I was eight years old. At first I thought they were just really bad headaches but the weird thing was that I would see spots or zig zags in my vision about an hour before I got the migraine. Well I suffered through the pain but as I got older they got more frequent and much worse and I had to do something. After a few years I tried immitrex as soon as I saw the spots but that was a bust. As a grew up the lights got worse and now I lose the whole right side of my vision, as soon as this happens I want to die-the vision lose is almost worse than the actual migraine. Now I'm on the preventative inderol (a beta block) and although it does not get rid of the migraines totally it does reduce the frequency and severity. I have also found that a spine or neck adjustment helps decrease the severity for me. I found out my spine was crooked (as are most peoples) and it was pushing the little axis between my neck and my head crooked which would pinch the blood vessels in the back of my neck and cause migraines. Even though that is now fixed I still find that any pressure on the back of my neck sets off a migraine. Anyway I was just wondering if anyone out there has any suggestions for medication you take at first symptoms of a migraine because I find I'm becoming immune to the inderol. Please e-mail me at equinn@v-wave.com (even if you just want to tell me about your migraines)

Thanks!


Rhonda,

I have recently started suffering from migraine headaches and was very happy to find you area of the web today. Thanks for your great service!

I am a 46 year old male with no prior history of migrane and no family history that I am aware of. My headaches started 3 weeks ago. I got a strange feeling on the right side of my head just above the ear and behind my right eye also. This was accompanied by slight to moderate nausea. The onset was at about 2 AM, so I went to bed in the hope that it would go away. I awakened about 45 minutes to 1 hour later with a full blown migraine. It was an excruciating and throbbing pain, still confined to the right side of my head. It was accompanied by severe nausea, light sensitivity, and sound sensitivity. It felt as if someone were driving a 6 inch nail into my head just above the right ear and into my right eye.

Unfortunately, the headaches have returned several times over the last 3 weeks. They always come on in the early hours of the morning. Sometimes they will start in my sleep, and other times they will start if I am awake late at night. I am averaging 3 to 4 headaches per week. I have made a few attempts at self-treatment, including Vicodin, Tylenol #3, Soma, and Advil, as well as a few dietary changes. Nothing has helped except for some small relief from the Advil.

I am very touched and humbled by the letters from the many long time migraine sufferers who have contributed their stories, and they have been a comfort to me. My concern is to get my treatment started in the right direction, and to avoid some of the pitfalls. Any suggestions you might have would be very much appreciated!

---Marc Shar kula1@aol.com


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