Journal of Migraine Sufferers

Hey Elaine in Syracuse, I tried to e-mail you regarding your journal entry but it said the address couldn't be found. Is LaineyK40 the correct address?

---Kim <>
St.Catharines, Ont Canada -

I am 24 years old and my migraines usually happen pre-menstrually and throughout, and at the end of a stressful event. Pre-menstually, we have figured it was due to hormone changes (been on an off the pill several times for this, to no avail) I tried FemPatch, a transdermal estrogen release system, but so far, no improvement for me on that. My headaches are almost always accompanied by extremely intense muscle spasms- usually I can feel "it" coming on my the tell tale tightness in my neck and shoulders, then they erupt into muscular pain so bad they feel "bruised." Sometimes i just sit there hitting my muscles HARD, just to try to loosed them, so I can "feel" them. I explained this to my neurologist, and he still diagnosed me as having migraines, on top of, or alternately, with "tension" headaches. My whole head feel like it is filled with rocks, and everytime I move my head the rocks get thrown up against my skull. Massage helps, but only as a band aid, while it lasts. Ice, the same thing. Does anyone have similar muscular pain?? No one else seems to. I tried taking Lorcet, and this worked for a while, but now it doesn't touch it. Darvocet makes me sick, sometimes large doses of ketoprofin or ibuprofin help. Nothing works! "Tylenol for your worst pain..."Ha! Son;t make me laugh! Tylenol is like taking a fruity Flintstone vitamin! And now I just lost my health I am really in a bind. The past few days have been relentless, and I thought about going to the ER, but after reading eveyone's experiences at the ER I am afraid I would be wasting my time- and it would cost me a good buncle of miney, and THAT would stress me out, which would probably lead to MORE migraines! Does anyone have any advice or experience with this kind of SEVERE muscular pain, pms or hormone related migraine, or thoughts on inexpensive health care or head ache clinincs in Florida? Thanks so much... God bless our heads!

---Sarah <>
Orlando, USA -

Hi I've been an avid reader of the migraine journal. Now with no new entries for the month of Feb. I'm getting worried. Where is everyone. As a sufferer of classical migraines since the age of twelve, I've found great comfort in this site. My style of migraine is to go for almost a year without any headaches, almost hoping they are gone for good, and then boom. I can have one everyday for six weeks. Sometimes I'll even have three auras in one day. The headaches that follow their auras are not incapacitating, and in that I'm lucky. However, the auras alone are scary enough for me. Usually they begin with the dreaded blind spots, followed by zig zag lines, then loss of peripheral vision. The whole event lasts about one half hour. On occasion I have had momentary expressive aphasia, and tingling in my arm and half of my mouth. Creepy. I've been to the neurologists, had normal MRI, eeg and etc. I guess it's just something that will continue to plague me. I do hope that this migraine journal continues. Would love to hear from any fellow sufferes.

---karen m <>
nj USA -

Hi to you all I need a bit of help today. The other night I was doing my washing in my bedroom!!!My husband told me I was saying "There's too much clothing here" as I fiddled around with the bedroom curtains. Today is Sunday, but I awoke really thinking it was Monday. My headache hasn't stopped and my husband is angry that I'm using the computer even though I explain it's really my only source of help. I'm sorry if I'm boring you all. Best wishes to you all Marilyn XXX

---Marilyn <>

Hi! I've found your web-site so helpful. It's nice to know that what we experience isn't extraordinary. I've had migraine for as long as I can remember (certainly from early childhood). I used to have about six migraines a year --- troublesome, but more a nuisance than anything else. However, I have been having daily migraines for the last 17 months, and it's been tough going. Visited several nerologists before finding a specialist who could help me. Now my migraines are starting to subside. What finally worked for me was a series of nerve blocks (into the greater occipital nerve --- not a trigger point), combined with a combinations of prophylactic medications. Now I am close to being well, and our next task is to figure out the optimum regine of medicines and other measures. In an effort to learn more about migraine, I started to do a lot of research. Now that I am nearly well again, I have been able to put together a Migraine Help web-site, at Come by for a "visit" any time.
mj Gibson <mjgibson>
Peterborough, ON Canada -

Hi I've just finished reading all your journals,wow I thought I was alone and now I know that I am not. I first had a classic migraine at the age of 17, I am now 39, I do not still experiance classic migraines. I would suffer through the fear of 20 min. of aura and then the HEADACHE. The aura would be the warning to take cover and be close to a toilet. My triggers seemed to be hormonal but not isolated to that only They were pretty frequent the first 8yrs. then they started to taper off. I gave birth to my last child 6yrs. ago The day I gave birth I was nursing my new son with my husband laying at the end of the bed when low and behold I started getting the aura[ I should mention here that I had been migraine free for approx. 5yrs.] So the nurse took the baby my husband closed the curtains and we shut the door [no noise] after 20 mins. no aura and no headache!!!!!!!! Now to share all the other garbage that I've gone through in place of that.... I've been in the hospital for three days about 10yrs. ago for diagnostic testing, checked me out for M.S. , seizures, who knows what else. Found " NOTHING WRONG". I experiance numbness on my right side of my face off and on. Last Feb. I woke up in the middle of the night with the room spinning I went to the E.R. and they said it was middle ear , went to a follow up visit to my G.P. and he sent me to a E.N.T. They all agree its simply middle ear, they prescibed MECLIZINE [ antivert] When I feel "dizzy" I pop a pill and I feel okey. The problem is that these "spells are coming on more and more often. Now my 6yr old complained of being "dizzy" Took him to a pediatric neurologist and he said he believed he was experiancing Migraine Variants?????????? Know one has ever suggested that my numbness or my dizziness could be linked to my history of migraines. I feel elated and frustrated that I have been scared the better part of my life. Thank God that I have a stong belief in God and left it in his hands..... That doesn't change the fact that I wish i new before this . I think come Monday I will call my Dr. and ask for a referal to a good neurologist. I've taken down some of your E-mail addresses so that I may contact you and compare notes. To those of you who are experiancing thos horrid headaches I only can say that I feel awful for you I remember all to well the vomitting and the pain so severe that i wanted someone to come and put and end to my life The Lord has been merciful in that way Now for my quest to get as much information as possible in order to enable my son in case he should end up with this curse. God bless you all My prayers are with you

---Elaine K DeJohn <Laineyk40>
Syracuse, NY USA -

Has anyone been diagnosed with hemoplegic migranes? My story is a lot different than any I read. I started having problems when I was about 10. What's wierd is that, I have so much pain and strange sensations all through my body that the headache is sometimes secondary. I usually start out with a mild headache feeling really dizzy and disoriented. As it progresses, I start getting severe pain in my chest and lower back. I throw up, have grey spots in front of my eyes, my skin hurts so bad that my clothes hurt. I can't stand for anyone to touch me. My muscles also get this horrible crawling sensation and almost convulsively stretch. I have been to doctores since I was ten and had so many tests. I've been told I had everything from hypoglaucemia to hormone imbalance. I have missed school, work, dates, etc. My family has always called these my dizzy spells for lack of any diagnosis. Most doctors treated me like I was a hypochondriac. This is such a laugh. I am so terrified of doctors that I will let a cold turn into pneumonia before I will go. The doctors aren't even the worst. Try telling your boss you can't come in to work when you have a deadline that day because of a dizzy spell. When I have tried to explain them to people, they have always treated me like I was some kind of wierdo. I imagine people with epilepsy or schitzophrenia get this kind of treatment a lot. I am a really hard worker, and I won't call in unless I'm REALLY sick. I have become so ashamed of this horrible "thing" I've had for so many years, that I never try to tell anyone about it anymore. When I get one, as I said, my skin hurts terribly. My husband can't touch me, not to hold my hand or even run his finger down my neck. I know he must feel as helpless as I do. I hadn't had any for a long time, than started having them about once a week a few months ago. Last week I got a cold which turned into bronchitus. My coughing caused an ear infection which was making me feel dizzy, and then Tuesday I got another "dizzy spell". I was up at 4:30 am to go into work early because we were so busy and the next thing I know, I'm hanging over the toilet throwing up. After an hour of this and the other symptoms started coming, I was crying, my husband was sitting beside me afraid to touch me, and I'm saying please go away because I can't stand to have him sit there like that so helpless when I'm feeling like that. They have been so bad and so often lately that I have started praying that, if I have a brain tumor or something like that, just let me die, I can't stand how this feels anymore. God knows I don't want to die I love life. I am not suicidal, I'm just tire of living with this "thing". Well, while I'm doing all this crying, and throwing up, and asking to die, I started my period. I have really bad ones with hard cramps. I honestly didn't know how to get up off the floor in the bathroom, and this is not me. I have always kept going. I am a survivor, not a victim. The worse something tries to put me under, the harder I fight it. These "spells" are the only things in my life (and I promise it hasn't been an easy one) that I have never been able to overcome. But, back to Tuesday, I spent that whole day trying to get to a point that I could go in to work. They were really depending on me to finish this project, and I needed to be there. Every time I would try to get up everything would go grey (this will sound funny, but the thing I remember most is the bowl of cat food that is all these different colors, and it all looked grey) I finally realized about 3:00 pm that I couldn't do it, no matter how much I tried. All of this made me, after so many years, go back to my doctor. I still couldn't tell him, until he asked if I had thrown up any (in relation to my bronchitus,which is why I made the appointment. I know I will have to go through a lot of tests before I know for sure, but he said it sounded like I have hemoplegic migranes, after I told him for the first time (I've been seeing him for five years) about my dizzy spells. I don't know if he's right or not, I'm almost afraid to believe there is really a name for what I have, but I'm going to try the Midrin he prescribed. I would really like to know if anyone else has had any of the symptoms I described, and if they really sound like hemoplegic migrane symptoms.As much as I would like to believe I have a realy word for my dizzy spells, I would rather know the truth than believe in fairy tales. Well, if you made it all the way to the end of this story, THANKS, and I would really appreciate any information anyone could give me Tammy

---Tammy <>
Ok USA -