Journal of Migraine Sufferers

Ronda -

Your home page brought a few chuckles and sincere sympathy for other readers. I appreciate the chance to share my story.

I am 40 years old and began having migraines at the age of 13 after spending the day in bright sunlight without sunglasses (I was probably also pre-menstrual). I usually had visual disturbances about 2 hours before the intense one-sided pain, aversion to light/noise and nausea would hit. Vomiting and lying down in a dark room usually brought relief over 12-16 hours. I was given Cafergot (ergotamine) but not told how to eliminate triggers.

Over the years, the migraines came about once every 1 or 2 months. By accident, I found out that Dramamine (even 1/2 tablet) would relieve the migraines enough to make them bearable. I also found out that my feet are freezing during every migraine attack. By warming them up with a hot bath/shower, warm socks, hot towel, heating pad or electric blanket, the pain would go away faster. Combining warm feet with a soft ice pack on the neck worked even better.

Two years ago, I moved from a rural community in New York to the suburbs of Boston after my husband spent 6 months unemployed. I went from a 10-minute drive to spending nearly 1-1/2 hours taking the commuter train to work (it still beats driving into the city). I spent the first year working in an intense training program, fighting to retain custody of my 10-year-old son, and having no time to exercise. I spend hours each day reading or working on a computer. What better reason for headaches?!

During the past eight months, I experienced a completely different kind of migraine. The neurologist terms it a "complicated" migraine, which has symptoms similar to stroke (but are temporary). In a "complicated" migraine, the aura is paralysis, with increasing headache pain as the paralysis diminishes. So far, I've had 5 of these in varying intensities.

The worst two followed the same routine. For about 24-36 hours beforehand, I yawned frequently, had no headache, and felt dull pain and swelling on my right side (particularly noticeable in my right leg). On the morning of the attack, I woke up paralyzed on the right side (nearly unable to walk), extremely fatigued, disoriented, unable to concentrate, slightly nauseous, extremely depressed and WITHOUT any pain. I called in sick, spent most of the day sleeping, and drank water with a little cranberry juice. By the following day, the paralysis was reduced, I could concentrate, I felt like eating (but still not a normal appetite), and there was a band of increasing pressure around my head. However, I was still not able to walk normally, so my left side tensed up from limping (relieved by massage & chiropractor). It took about 3 more days to entirely lose the effects of these headaches.

I'm working with the chiropractor, massage therapist, neurologist and family doctor to try and get these headaches under control. I'm taking 25mg Zoloft (anti-depressant) and a B-complex vitamin daily. I'm supposed to take a baby aspirin daily, but lately I've been taking 3-4 regular (buffered) aspirin daily to keep the pain under control. Standard migraine drugs (Midrin, Anaprox, etc.) can't be used until the paralysis is gone, so they are useless in this case.

Suspected triggers are beer ed wine (I rarely drink, but had beer or wine about 2-3 days before at least three of the attacks), glare (sunlight, the fluorescent lights in my office, my computer screen - I'm getting glasses with anti-glare coating), lack of exercise (may try for a 35-hour work week instead of 40 to have enough time), and MSG (a tough one to avoid). Strong chocolate cravings can indicate a magnesium deficiency, so that's a real possibility, too. I'm keeping a daily record of what I eat, weather changes and significant events to see if I can find a pattern.

I welcome any suggestions for articles, books or other material on "complicated" migraines. I'm also interested in sharing "war stories" with any readers. Thanks for listening.

---Beth bot4966@bostbrvo.dcrb.dla.mil


I am a 37 year old female. I have had migraines headaches for nine years and have tried everything to releive my pain and suffering. I live in Arkansas and my family doctor of 12 years has been prescibing Lorcet Plus. Over a period of years I have built up a tolerance and must triple my prescribed dosage to get some relief. However, this causes me to become nauseaous and I'm afraid that it is having bad effects on my stomach. I have discussed this numerous times with my doctor, but he continually refuses to prescribe anything stronger regardless of the detrimental effects the Lorcet is having on me. Will you please direct me to a Physician in Arkansas or even a surrounding state that prescribes Demerol, as for I am allergic to opium based products. At times I get so bad that I must be taken to the emergency room where I am given a Demerol injection releive my pain. This is the only drug that gives me any relief.

I can be e-mailed at RLynch6151@aol.com.

Thank You.


Dear Ronda,

I am new to the Internet and was so delighted to see your page. Good girl!

I am a "migraneur" of fifteen years. (I love that word; it makes you sound like someone who has actually accomplished something besides lying in a dark room for hours on end.) In fact, I am just coming off of an episode right now; today is "damage control" day. The inevitable phone messages: "why haven't you done what you said you would do?", "where were you?" - are lined up on my answering machine. Should I answer them? Should I fix myself some cinnamon toast instead?

I have had my life completely altered (ruined, if you had asked me yesterday) by this condition. I have metamorphosed from a super-organized single working mother to an apologetic flake. I consider myself extremely fortunate in that Imitrex works for me 90% of the time. The many years I spent trying out other remedies, the dark fog I lived in during "The Fioricet Years" - they are all behind me now. I have so much regret for the time lost. The pain is no picnic, as you know. But the time lost is what really bothers me.

Thanks to a lot of self-education, a sympathetic husband and one really good neurologist (out of probably ten doctors in all), I have my migraines "down" to one or two a month. I take a couple of trips to the hospital a year. I had daily migraines for a long, long time - especially long if measured in terms of my kids' childhoods. The syndrome is such a complicated, individual thing. One thing I am absolutely sure of: there is no pat, easy answer for anyone. And comments by health professionals who claim that there is should probably be ignored.

Thank you again for creating this web page. May I suggest a new category? How about "Not-So-Helpful Hints" - a tongue-in-cheek listing of advice that people have had the pleasure of receiving in their quest for relief. I have a few I'd like to add.

Thanks again,

---Diana Luellen lufanfam@scruznet.com


I suffered from migraines until I went to see a Chiropractor - and I have gone to the Chiropractor once a month, I haven't had a migraine since! It has also improved my general health. I now don't have to worry about migraines anymore!

---Jana jfrancis@sisna.com


Thanks so much for your web page! I stumbled upon it by accident last week and have already passed it on to 3 other people. What a wonderful support group!

I live in Charleston, SC. , and am an ambitious female who will turn 50 later this year. I have been a very successful Realtor for almost 20 years and own my own business. I have a strong family history of migraines - mother, brother, grandmother & uncles. I started getting them ocassionally in my 20's, but since I haven't lived close to my family for 30 years, it never occurred to me that they were migraines. Finally when I was 45, and had just re-married for the 3rd time, I went to an E-N-T doctor and announced that I probably had a sinus infection (never had one before, mind you, but felt certain my headaches were sinus headaches). After a careful examination and history taking, he correctly diagnosed my headaches as migraines. They had been bad for the last 10 years, but being single I was used to working hard, coming home & going to be with a headache & muddle thru the next day. With a new marriage, I was seeking better "quality of life". My migraines continued to get worse and he referred me to a neurologist who speciallizes in heaches.

I feel like I've been thru it all and am most discouraged. I've tried the beta blockers, calcium channel blockers, amitripline (which was great because it helped me sleep, but did put on the weight), depakote & antihistimes. I have also been thru bio-feedback at MUSC in Charleston, and that was somewhat helpful - I learned I'm better with a headset for the phone at the office, than keeping it cradled under my chin, and also adjusted the position I drive a car (hands by my side, low on the steering wheel keep the muscle spasms down in the neck). I do not practice the relaxation tapes like I should - always seem too busy.I have been getting as many as 15 migraines a month. Thanks God I own my own business, so I can "go down" without having to account to a boss - but then I often end up in bed with a "killer migraines" checking voice mail & answering the emergency calls, when I feel up to it.

I recently wrecked the car, trying to make it home from the office during an attack - fortunately just minor damage to my car, as I slammned into a drainage culvert 1/2 block from my house. I also tend to try to get as much done as possible, before I go down (don't we all?) and found myself very disoriented when checking on vacant property on the way home & had difficulty remembering the way home.

My neurologist wants me to go to the Diamond Institute in Chicago. I would love to hear from anyone who has been there! After chatting with them, it sounds like a repeat of what I've already been thru - and at a high financial cost.

I know that stress, heat & skipped meals are definate triggers. I've got my business up for sale, as I know it is "high stress", but will need to work at something once it does sell.

Please reply if you have been to the Diamond Inst. in Chiago - I'd love to hear from you.

Thanks!

-- cml@awod.com


Dearest Ronda,

My name is Toni and I am a 28 yr old woman who has been suffering for almost 4 years now. I cryed for an hour reading the other histories because I've felt a little bit of everyones migraine history. I've been on amitriptyline for 2 years and I'm on 200mg this week and I'll go up to 210 on Sunday. As many of you know, side effects are crazy things. My have been short term memory loss, massive weight gain, vision broblems, sweet cravings and dry mouth (in the beginning). I have been unsble to work because of my triggers - chemical scents; perfume, gas fumes, fresh newsprint inc, air freshener, cigarette smoke, clothes dye. I also get bad ones when I'm under stress. I have tried verapamil and zoloft and nothing seems to be working other than the amitriptyline. Because I can't work, I aplied for SSD and Medical Assistance and I was denied Med. Assist because they don't thing that getting a 'headache' is a good reason for not working. Just this morning I received the denial letter form SSD stating pretty much the same thing. I am appealing both but I'd like to hear from anyone else you has gone through this. My family has not been very supportive and I don't think they will be unless I can win the appeals. I would also like to tell others to keep fighting to make others understand that they don't go away with asprin or Tylenol. I have found that getting a weekly massage helps with the stress.( I have a good friend who is a MsT and I get them for free).

---Toni Kterer@AOL.COM


TO ALL READERS AT RONDA'S MIGRAINE PAGE: Please Read This!

I have suffered from CLUSTER HEADACHES for well over 20 years, and each year they occur, I have tried different remedies.

To date the only effective treatments have been:

a) acupuncture for the season BEFORE the attacks, and, b) Sumatryptan

Firstly, note, that I have CLUSTER HEADACHES. These feature the classic migraine symptoms, but ONLY occur once a year for me for about 6 - 8 weeks, after which I never have another "migraine" until the following year.

The acupuncture was effective when I had about a 10 week treatment in the season before the cluster headaches were due (my attacks have been when the temperature drops: autumn, or "fall" as you may call it, and winter). This was quite a good "prophylactic" ie. helped prevent headaches.

I also recommend FEVERFEW but this will generally ony help reduce, not defeat the pain, and must be taken a few weeks before the attack phase.

The Sumatryptan ("Immigran" or "Immitrex") also works, but as an "abortive" i.e. it helps reduce the pain once an attack occurred. But as you all know, it is very expensive, and does not fully eliminate the pain, plus you need to endure the first half hour or more until it works. I belive the injectable is faster, but it also has more associated risks. It isn't available in Australia.

One other quick thing; try to PRESS HARD ON THE UPPER LIP MIDWAY BETWEEN the top lip and the nose when in pain. it HURTS but seems to reduce the migraine pain.

This year, I was on the Internet for the first time, and did some research into my problem. I found that the Canadian research strongly backed up the seasonal nature of cluster headaches. So the brain scans, etc, were not really useful!!

To make a long story short, my research uncovered a possible mechanism that is implicated in cluster headaches. The medication I found for ths was not available here in Australia, so I had some imported. It is a product which is readily available (and very cheap) in the USA.

The FIRST NIGHT of taking the medication, I had an attack, there were all the symptoms, BUT NO PAIN.

The second night, and from then onwards, I have not had an attack: no pain, no symptoms. ZERO.

I would like to share some of the information with fellow sufferers; but I do believe that not all "migraines" are the same, even if the symptoms are.

"Cluster headaches" may not have the same causal relationship that, say, a typical migraine sufferer may have.

So: two things, if you suffer from CLUSTER HEADACHES ("migraines" that only occur in a group at a particular time, then cease) or if you are a traditional sufferer and want to try a simple medication that may work, email me for my advice.

I have found this to be an astounding breakthrough, and one which either:

a) has been found by medical research, but because it is very cheap and generally non-prescription, will not make money for the large firms, (compare the cost of Immitrex); or

b) hasn't been researched or tried by anyone other than "home tinkerers" like me.

The conclusions I reached were via reading medical extracts, etc, and I have not found any official agencies trialling this prophylactic drug.

It was, however, a conclusion I reached from reading some of the medical literature on the mechanisms of migraine, but particularly CLUSTER HEADACHES, which is why I am not as confident of the ability of the treatment to work for all sufferers. I also cannot speak for side-effects, but information I have had from medical sources who use the drug for other modalities suggest that it is quite safe. My guess is that it would be safer than most of the rather full-on drugs we have all tried in the past.

Anyway, contact me at my e-mail bigfeats@ozemail.com.au for more info.


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