Journal of Migraine Sufferers

Hi Rhonda;

My mother is 58 years old and has suffered from migraine headaches for as long as I can remember. I am very concerned because she recently lost her job. The reason: lack of attention, memory and just being scattered brained. The cause: of all the drugs that she was taking to either ensure that she did not get a headache or to control the headache she already had. I quess I am really disgusted because all her physicians appear to make the quick fix. Well, this has cost her career (she is a nurse) and currently she can not afford to live. What should I do? Her doctor has told her to quit taking the medication and she has, however, she is bouncing off the walls. I am concerned about her health and I am also concerned about how she will live. Is there any recourse against her past employer or physicians that I or she can pursue? Can she collect disability or unemployment? Can she treat her headaches without drugs? Any advice would be greatly appreciative. ---k.carlson@banklife.com


Ronda:

My name is Marci and I am a 19 year old female. I have just been diagnosed as having migraine headaches ( even though I've been suffering from these headaches for well over 2 years ). Before now... my mother just brushed me off saying that it was probably only sinus headaches, so I had given up..... or at least until recently when the pain from the headaches was too much to bear. I urge parents to listen to their childs' complaints of headaches so that they don't have to suffer needlessly. I am now taking 2 different medications..... one I take every night ( Calan ) that is a calcium channel blocker, and the other is Imitrex. The Calan certainly would be great for someone with insomnia :) I've been sleeping quite well at night after taking it..... so well that I sleep through my alarm some mornings and still feel groggy even when I do get up. As bad as it sounds though, it still beats having your head feel like it's going to explode and feeling like you're going to throw up. I almost think that the migraines would be a little more tolerable if they weren't associated with such awful nausea. Well anyway... there's my 2 cents worth.... and it makes me feel better to see that I'm not the only young one suffering from these headaches from hell. :)

---Cyberbungi@aol.com


I just found your web page. I need help with my headaches. My doctor has just stopped prescribing narcotics and it is the only thing that works for me. Do you know any one in the Atlanta area that is not so convervative? Everyone is so paranoid about narcotics. My husband is a certified addicition counselor and he has even been to talk to my doctor. This is the only way I can function in my job. I am pre-menopausal and I get these 3 and 4 day head aches about 3 or 4 time a month. They will not go away until they have run their course and what makes it better for me to function is either lorcet or percocet. Otherwise I have to stay home in bed with my head covered.

Please help.

---Cheryl Dunbar dunbarc@rehoboth.co.dekalb.k12.ga.us


I too have suffered migraines for many years. I first started getting them around eleven years of age. The doctors told me they were tension headaches and would "adjust" my neck. Of course it never helped. Then I was told they were sinus headaches. For years the sinus medications helped enough that I could get by. In my late twenties, I began having severe migraines (but I didn't know they were migraines) and figured out for myself that I would get them the day after I drank orange juice. Many years later someone I worked with told me about her intolerance to acidic foods and suggested I try avoiding them. It made a big difference in my headaches, as well as stomach problems and skin problems. About two years ago I began having the severe migraines again. The ear, nose, and throat specialist ruled out any problems there and sent me to a Neurologist. I have been taking Depakote since then which has helped with the everyday headaches. I still get occasional severe migraines, which usually go away with Imitrex.

I have found many things that trigger the migraines:

- Not enough sleep
- Sleeping on my right side (my headaches are usually on the right side) - Acidic food
- Some food I must be alergic to but I haven't figured out what is in them to cause the headaches; 12 grain bread, ice cream, very cold drinks
- Breathing cold air, especially on a very bright day.
- Riding in a too warm car. If I already have a headache, this is unbearable.
- Too much snacking and not enough regular good meals.
- Sitting too long and leaning on my elbow as I sit.

When I get a headache, I usually find it helps to walk around or lay on my back without a pillow, bending my knees just enough to take the pressure off my back.

I hope the things I have found to help my headaches also helps someone else.

---deborah.e.eustice@boeing.com


Hello Ronda !

I have a headache history since before 8 years old but more frequent and intense headache started 4 years ago. which is started my daily life adverse distruib and since 1 1/2 years my headache is continue, daily and untreated. my daily life become really dreadful. I have been treated continious since last 4 years under the renowned neurologist, E.N.T specialist, Pshycharist, general physicain and so many other physicain, but they are not able to solve my problem till yet.

They treated me as a migrine patient and give me any type of nti-migrine drugs. I also used a lot of anti-depressant.but all these are useless.

My headache is aggrevated by talking, laughing, walking, playing, working,and any type of movement.

I would like to ask you that Is it migrine? If it is migrine why did not it managable till yet. give your suggestion and help.

Thank You,

NABI BAKHSH, Pakistan waseem@super.net.pk


Here's one for you.

I started having migraine headaches when I was 6 years old, in first grade. They came on regularly in one-month increments. The demerol and phenergan or demerol and vistaril, or demerol and whatever therapy was integrated through injections and occasionally suppositories. (I can't spell). As with every headache, more often then not I would wake up with them. The nausea and vomitting were so bad that I usually tried to sleep on the bathroom floor as I was not usually able to make it across the room. Doctor's basically though once I started doing the hormonal thing that they would clear up. I did have an EEG long about '73 or '74 which showed no brain, no pain. Treatment stayed the same. As I got older, they didn't decrease. I continued the severe vomitting throughout high school but that lessened. The "aura" that I have the most problems with is the loss of peripheral vision in one or both eyes, as different times. It is like a ring of confetti that gets worse and worse. This makes me dizzy and a lot of times disoriented. I also get patches of numbness that travel. For example, the pinky and ring finger, then the ring finger and middle finger, and so on. When it hits the wrist, it travels in blocks up my arm. This is only on one side. Once it hits my neck, even half of my tongue has only gone numb. I have had three or four incidents where I have lost my speech. I know what I want to say but the words come out garbled and sound like some foreign language that nobody understands. These are usually also precipitated by extreme moodiness and bitchiness. Sugar intake is related, hormones are related, alcohol intake is related, NO RED WINE!!! I have lived with these little no-nos all my life. I have been on beta blockers, tried Imitrix. I HATED the side effects, and the shots were worse than the headache. Ergotamine made me sick. Sleep patterns also have a big effect. I have consulted chiropractors which usually end up giving me a headache instead of preventing one. A neurologist put me on Elavil up to four a night. I only take 25 milligrams because I gain weight. I have tried getting off, but gained 10-15 pounds within a month after getting off. I DON'T LIKE BEING FAT!!!!! I am short so every pound shows. I will not do anything that adds weight to me. Although, when I was heavier, 40 pounds, I had less headaches but was miserable. I am a type A personality, four kids, two jobs, coaching, dadadadada. Very addictive personality. I am convinced that allergies have something to do with it. I am convinced that getting all wound up and dropping back down contributes. So many things go into consideration that I could go on for days. I am 33 now. It's been a long 28 years. This last one was two weeks. I had a shot of demerol on Tuesday, and then the second thursday after that. Today is Friday, and I felt great when I woke up for the first time in two weeks. The doc that I saw yesterday has decided it's time to stop this course of treatment. It's easier to tell you what I haven't tried than to tell you the things I have tried. Oh, yeah, Bananas will give me one if I eat them in the mornings. Figure that one. Hope I haven't bored you too long. I could go on and on and on. I currently take all kinds of goodies in order to fall asleep. .25 Xanax, 700 Milligrams of Soma, 1 Allegra, and an elavil. Sometimes that doesn't even do it. Thanks for listening. still got them after all these years!!!

---cindy fingers2@digitalis.net


Hi! Tried Imitrex Nasal Spray last week for the first time. It cost $107 for 6 single-use dose packs. When I used the spray, I immediately experienced hot acidy fluid flowing down the back of my throat. This went on for 30 minutes, causing me to begin non-stop vomiting. As with most migraines, vomiting makes the migraine worsen, which causes more vomiting, and so on. This Imitrex Spray made my "little beginner migraine" worsen in short order, and eventually I required two rounds of Demerol & Phenergan injections to bring the Monster Migraine under control! I returned the 5 unused doses to my doctor, with the hope that another patient wouldn't have such bad reactions. Just wanted to pass this on.

---Hazel btnature@magicnet.net


Ronda:

I have an 11 year old daughter who has had migraines for the last year and a half. They seem to show up without any rhyme or reason about once a month or two. For example, the other morning she had an ice skating lesson at 7:15 a.m. followed by a biscuit, sausage, egg & cheese sandwich with milk. She layed down later in the morning and described sitting up like this: "When I sat up the blood in my brain stayed on one side so I felt dizzy. My blood has to learn how to circulate so it doesn't start to hurt." The pain got gradually worse all day. She didn't tell me about it until in the evening when the pain was intollerable. Ibuprofen, a dark, quiet room, a cool cloth on the head and extra sleep works for her. Any comments about management, causes or prognosis?

---schrader@rconnect.com


Last month I spoke with a patient who had waist length blond hair, which was found to weigh four pounds. She cut it to shoulder length and her migraines stopped.

I wonder if the "French " or "German" braid hairstyles, worn during the day and let down at night ( as my grandmother did) would prevent migraines without sacrifice of hair length. My grandmother's hair was so long that it stopped growing, and thus did not turn grey until years later than expected.

I don't want to appear to be using this channel for personal gain, but the fact is that my mother and I are migraineurs and as a pharmacist, I took it very personally when she went through agony. I therefore developed a nasal spray containing D.H.E. 45 ( same as the Sandoz injection) and mail it nationwide. This was possible due to my advanced training ( MS and PhD pharmaceutical engineering) and industrail R&D experience. DHE is an amide, unlike Imitrex which is a sulfonamide ( has caused breathing problems and hives in many sulfa and sulfite allergic patients). Compared with Imitrex, DHE is longer acting ( no breakthrough headache same day) and causes fewer reported side effects. The spray is provided for $27 per 6cc (delivers 5cc) or $52 for 11 cc, and it works very well. It is packaged under inert oxygen-free gas and remains fresh for over 3 months if refrigerated. Even after a commercial DHE spray becomes available, the cost will remain much less for my DHE product. It will always be more economical from my pharmacy. Some patients prefer DHE 2 mg suppositories, which I provide for $3.75 apiece. Others use out ergotamine tartrate sublingual tablets, which taste bitter, but also work well. DHE still only 20% as many reports of side effects verus ergotamine tatrate when eually effective doses are given, and ergotamine tatrate stimulates uterine contractions, while DHE does not.

---David Woodford, RPh., Primatek 800-368-5254 RI lic #2246. Rph7@aol.com


Ronda-

I have been reading all of these entries and thought it was about time I entered my own experiences. I was motivated to look for this page and other internet info on migraines recently, when Stadol was changed nationwide to a Class IV controlled substance.

I have suffered from chronic migraines for the past 3-4 years. I had experienced a few earlier and my regular family physician had prescribed Stadol for them. For the first one, my instructions were to use 2 sprays in each nostril every 4 hours. Well, as anyone knows, this is 4 times the normal dosage. It helped, but I really hated the side effects-bad taste in mouth and awful drip down the throat, feeling disoriented and the nausea, which is bad enough from the headache but which is made much worse by the Stadol.

When I started experiencing these headaches every 3-5 days, my psychiatrist also prescribed Stadol, to be taken as directed. After having these constantly for a couple of years, I got into the Pain Rehabilitation Center at the Medical University of South Carolina in Charleston. The doctors there wanted me to be able to deal with these headaches without using Stadol, or even any kind of pain medicine. I went through bio-feedback, relaxation classes, physical therapy and psyche sessions.

I was there three weeks and I really did better-I only had a few bad headaches. The doctor there tried the lidocaine treatment recently developed but it only gave marginal relief. I was also give a prescription when I left for Compazine (suppositories) but I have not had great luck with these.

I really think most of the time I was there, I was half-afraid to let anyone know really how bad I was hurting, because at one point, the physical therapist told me that she believed there really was NO SUCH THING as a migraine headache!! Talk about making someone feel self-conscious. I now also look back and half-believe these people thought I was half-addicted to Stadol.

Now I have read lots of others' experiences, and I gotta tell you that there is no way you can get addicted to this stuff when you are getting 4-6 refills per month. As anyone else can see from reading this journal, these little bottles have about 12 sprays each, and if you have to take a spray at least every 4 hours (and sometimes 2 every 4 hours is allowed if no relief is apparent with only one spray), then these little bottles are only going to last a day or so-which is just about how long my head hurts each time. So, if I use a bottle for a headache, then wait for the next one to hit, anywhere from 4-7 days later, how can I be anyway close to be addicted if I don't need the stuff between headaches??

Now if someone has been going through a bottle a day, every day for several weeks-that is a totally different situation! I am venting all of this because now this weekend I had a WHopper of a headache. I even knew it was coming so I called the dr. Friday afternoon explaining that I had NOT gotten a new prescription when I was in on Monday, and that the last time the dr gave me one was on October 13 (he gave me a scrip with 5 refills-6 total) and since I had 7 headaches between Oct 13 and Nov 20 I had nothing left (especially since I left one somewhere at my sister's in GA). So what happens?? ABSOLUTELY NOTHING. I called again today (Nov. 24) and asked that the dr be given a message that thanks to his ignoring me I had a crappy weekend, and if he is not going to help me, at least he should let me know why. Well, this woman who answers the phone is the same one I spoke to on Friday and she is miles away from being helpful at all. On Friday, the first thing she said to me was "Didn't you get one when you were in here to see him?" as if I am trying to pull some kind of scam.

Well, here I am reading all of these entries, and I have printed everyone that has any reference to Stadol and am going to send them to my dr with my hand-written comments on each of them!! I am tired of trying to explain that I hurt and this helps, and the stuff makes the hurt go away, even though it makes me feel crappy every other way!

Nuff Said!!

Mary in SC h5513@mindspring.com


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