On-Line Migraine Journal

The on-line migraine journal is intended to be an area for migraine sufferers to post their migraine histories and experiences.

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Hi again!
I know it has been a few weeks since I posted my first letter, but now that I have gotten well into my 25mgs of Amitryptiline and Midrin when the pain hits, which usually comes out of nowhere, and leaves me with blurred vision, and bad sensitivity to light, and I always have this terrible numbness and tingling which prevents me from sleeping, I am doing much better! I don't know how long this "feeling better" will last, but it is SO nice for now! My only problem now, besides the occasional mild headache, about once or twice a week(still too many),is that I have trouble focusing, and sometimes the lights are still too bright, and I have this interesting little black "spot" in my left eye, sometimes two "spots" and they move around with my eyeball! Very irritating when I am driving! And for the longest time, many years now, I also have a lot of short term memory loss, what a lot of people call being "scatterbrained"(example: me losing my keys about once a week in a thousand different places, or forgetting that I have clothes in the washer that need to be dried), that I have finally discovered may be due to all my past thousands of migraines, that ocurred all over my head! Anyway, if anyone has any similar problems, or suggestions for my numbness, I would appreciate your advice, especially about the daily numbness and tingling! Sometimes I put a cold facecloth over my face whenever I had a really bad headache, that might be something that could help others looking for something new to try, also excersizing and occasional yoga and a once a week meditation in a hot bathtub is great too. But over all, to all other sufferers out there, just try to stay positive, and pray a lot, and don't give up!!! I haven't!

Caroline <eniloracdnalloh@hotmail.com>
Wednesday, July 25, 2001 at 23:59:50

I didn't get a migraine until I was in my mid forties. Prior to that, I got a "bad headache" just shortly before my periods and that was it. Now, it is a definite migraine that seems to have a 4-day cycle with projective nausea and before I found immitrex, seemed like my head would blow off. I didn't think anyone could survive this intensity of pain. I believed it had something to do with my cycles as it seems to come regularly at ovulation and just before a period. Now that I have been menopausal for a year and I still comes, I don't know what to think. Also, I'm very sensitve to alcohol at certain times and other times it does not bring on a headache. That seemed to fit into my hormonal theory.

One time I took an immitrex tablet and it did not work, when I took the second, I ended up in the hospital with heart-related problems.

Now I take 20 mg of nortriptyline and the severity has decreased much but still need the imitrex a few times a month. I hate taking prescription drugs. Yet I found that the regular alka seltzer and feverfew (with the din#) didn't reduce the severity much.

I would like to speak to anyone who has a similar history as mine and know how she is handling it.

Also, any MD's out there, I have heard about a hormonal connection but other than just hearing there is a connection, haven't been able to find out anything more. Can you give me more insights? I've also heard there is a genetic component and wonder if there is any more info on this either, not to mention any new minimally harmful remedies for those of us that are just post menopausal.

E B <michaelberry1@msn.com>
Wednesday, July 25, 2001 at 16:26:01

My pain started at the young age of 13. I'm 36 now and have noticed how as my life changes so do the migraines. Actually, I remember telling a doctor of my painful problems and she actually asked me if it was because I was having problems at home or school. Like I was making them up for attention. Isn't it funny how times have changed for women. My migraines come when they want to and leave about the same way. I have blurred vision and what I like to call an intense sewing machine zigzag stitch that runs thru my eyesight. Nausea, vomiting, shadow headaches, inability to focus the next day, sensitivity to light for a few days after, numbing in the face and hands, even my thought process is slow. As I've gotten older and have had 2 children, I think they have changed for the better. Maybe because you can't lay in bed all day when you have a 2yr old, or hormones that have been introduced into my body over the years(thru pregnancy). People have said to keep track of what you eat...but just when I think I have it narrowed down to a food or a time of day (or month) it changes again. Stress is always a factor. I try alot of deep breathing and "if it doesn't get done today it won't" thinking methods. But when you have a day planned and you get a migraine it is hard to tell the kids plans have changed. My best to sufferers. Thanks for letting me share.

susan luther-sutton <susiestylin@AOL.com>
Wednesday, July 25, 2001 at 12:05:44

Please let me introduce myself. My name is Tia. I have had migraines for as long as I can remember. I have many different symtoms, and not all of them present themselves at the same time. I suffer daily. I have auras all day long in the form of "seeing spots." Little twinkling lights. Sometimes I think of them as fairies in my vision, all twinkly and bright. I have left arm numbness, confusion, decrease in intellect, fortifications in my vision, nausea, occasional vomiting, etc., not to mention the pain. I am lucky though. Not every migraine I have results in unbearable pain. Lots of the time I only register about a 7 or an 8 on the pain scale. But I do have painful migraines from 3 to 5 times per week.

I have tried to be very "pro-active" in the search for relief from my migraines. I have always been interested in the field of medicine and was employed as a pharmacy technician for 8 years, and then changed professions to a more flexible job, medical transcription. I hope that some of my experience may prove useful to my fellow migraine sufferers. I hope that I can be of help to others.

I have seen quite a few physicians, some with good intentions, and some with no intentions to help me at all. I have tried a laundry list of medications, so many that I cannot even remember them all. I have been to a chiropractor, tried accupuncture, relaxation techniques, etc. Mostly, I just try to sleep them off. Benadryl to knock myself out when they become unbearable; a good 100 mg and I will sleep for about 6 hours. I am currently trying out Depakote. I also take 20 mg of Prozac, which seemed to help at first, but then kind of quit working for the migraines, but keeps me from becoming a complete and utter bitch all of the time. I take Fioricet when I absolutely HAVE to. I try not to. I have done the rebound headache routine and don't want to get wraped up in it again. Anything stronger narcotic-wise just knocks me for a loop and leaves me hugging the toilet bowl for even longer than I would have been as a result of the migraine. I tried to isolate triggers in my diet, unsuccessfully. I have quit caffiene, to no avail, and now and then drink an occasional soda, along with the caffiene in my Fioricet.

My friends and family genuinely try to be sympathetic, but it still tends to get old. I can tell when my sweetie is loosing his patience with me. Mom just says she is sorry, and so am I. My father is the one I inherited this from. His are far less frequent, but far more debilitating, leaving him incapacitated for at least 24 hours at a shot. Crying, barfing all over, and swearing profusely.

Well, enough for now. Thanks for listening. I appreciate it, and I am looking forward to getting support and a sympathetic ear here at the Migraine Page.

Tia Alonso <Tiakitty13@yahoo.com>
Tuesday, July 24, 2001 at 21:50:57

I've been a migraine sufferer for as long as i can remember. I'm 27 now so it's been a while. They unfortunately run in my family. I've noticed that my headaches are changing as I get older. I'm actaully used to a migraine lasting for as long as two weeks. I'm actually almost used to the throbbing pain it causes. This what I've determined so far...they occur on my right side, stemming from the back of neck and settling above my right eye. It used to be just that. i never had any of of the symptoms. I was on birth control pills and when my pill was switched the headaches became more frequent i was taken off the pill for about 8 months. I was placed back on a low dose pill and was fine.

I've moved from FL to the washington DC area and have been here for about 4 years now. We've got some pretty wacky weather here and it plays havoc on my migraines. What I've noticed this year alone is that the migraines are getting worse. Now I have light sensitivity, nausea, and blurred vision. what's settign them off?? The last two times has been on days when we are under a heat advisory. I'm beginning to believe it's the weather flucuations causing them. And I don't want to mix drugs taking an allergy medication with an Imitrex. I've tried everything short of acupuncture and biofeedback. I'm at a lost. Any other suggestions?

Heidi Sumner <heidi.sumner@marriott.com>
Tuesday, July 24, 2001 at 11:08:17

My migraines started as a child around 9, they were so bad! Noise, lights, taboo! Dark room blanket over my head ! Nausea, vomiting head splitting pain ,can't take aspirn because I just puke it up. Still get them. Not often. THANK GOD!!!! CHOCOLATE,CHEESE, BAD BAD BAD migraine HELL! I remember, "oh help me , please". No one could, back in the 70s there was not a lot of discussion about migraines and such like there is today. Much more information and medication to help migraine sufferers like myself. I thank god that my headaches have nt reached the stage where I need a prescription for something. I can usually ride it out. Once I puke I feel better. well gotta go . Feel Well Soon .

Marianne <maryjane56@Iwon.com>
Monday, July 23, 2001 at 20:16:18

Hello my name is Julie. I have been suffering with migraines but only in the summertime. Does anyone else have this problem. I take Midrin, which is a really good analgesic and sedative for my headaches, but would like to know the real cause for them. I do have myofascial pain syndrome/fibromyaglia, so this could have something to do with it.

Julie Walters <jwalters@sprintmail.com>
Monday, July 23, 2001 at 17:59:28

I have been suffering migraine for 30 years. I get 6 to 8 a month and they last 18 to 24 hours. I have been to neurologists, chiropractors, herbalists, hypnotists, psycyhiatrists; I have tried acupuncture, I quit smoking for a year, I quit drinking caffeine for a year, I cut out all sugar for a year, I cut out all food dyes for a year, I ate only natural foods for a year -- none of these things helped. The only thing I have found that will bring one on that I can control is alcohol, so I don't drink.
What I do know is that when I was pregnant (twice) and while I was breast feeding (14 mths each child) I did not get a migraine. This leads me to believe that they are caused (for me) by hormones. I know that I am guaranteed a migraine when I am ovulating and at the beginning and end of a menstrual cycle. This is not a good enough reason for doctor's, though, to remove the causes of this problem and I still don't know what causes the rest of them, though I suspect the weather at times. It took 15 years and two attempts at suicide and a stay in the psyche ward of a hospital as well as stabbing my foot with a fork (to show that it didn't hurt as much as a migraine) before my doctor took me seriously. I have prayed to God and even prayed to the devil (I figured he must be the creator of these evil things).
About 12 years ago a new drug came out called IMITREX. I believe this drug has saved my life, literally. I cannot use the pill since I throw it up before it gets a chance to work, but the injection is wonderful, it works within minutes!
Though I do have to use more than one on occasion, I am now able to live with this horrible, debilitating illness.
I am currently wishing my life away by praying for menopause which I am hoping will free me completely from this agony.
My sympathies to all who join me in this suffering, and here's a helpful hint to help relieve the pain at times. Try an ice pack wrapped in a towel, one for the left side of your head and one for the back of your neck. It really can take the edge off.
All my best in your struggles, Lydia

Lydia Snape <snape@sympatico.ca>
Monday, July 23, 2001 at 14:45:10

been awhile since i posted hope some have found what works for them...i know am a single father raiseing three girls and dealing with migrains ..remember dont let them run your life dont be afraid to tell the er doctors what you need if they treat you like a addict stand up for your self if you cant because of the pain take someone who will...they are not god's just people in white coats we have a sickness that causes pain
we build up tolarace levales like no other people becuse we take masive amounts of these drugs...myself i can live comfortable on ultram and robaxine a muscle relaxer i got to the point where i could take three ten by five vicoden like asprin...and that was like shooting a bb gun at a frait train the ultram and robaxine are not cures but they do help some with the pain and are none narcotic and alow you to function ..in my case this is what i need with three girls at home ...so if you cant find a cure for you then get rid of your suffering at least find a doctor that will listen and give you what you need to get by if your serios in the southern iowa or misourie area let me know my girl frein gave me a name of a wonderfull nurse practitioner that will send you in the right direction ..and just a note to all those out there i know there are some she is very very good a figureing out who is a abuser and who is not so plase those people should not even bother but for those of us that would like to try her help then let me know ...i have met a beutifule ladie that has showed me away out of the stess of haveing headachea without having stuff at home to take i was takeing 60 ultram a week figting my head so every week i would fight with the doctor if he would give me another perscriptionhe would usally say no so i would go through a week of headaches with nothing to tone them downn week since i was inerduced to this knew doctor i agread to have aanother mri done one of ten but any way he looked me over asked what i took ask if something stoger was needfor pain cotrol till we did some thing to stop them"sorry about the spelling doing this with a magior hadbanger o.k" any way the doctor gave me enough meds to last a month with two refilles on each this was th ultram and the robaxin then this is great becaus i havent had a good night sleep in years gave me a thirty night supple of sonata "sleeping pill"sleep at least four hours and you feel like a million dollars then if you go from cronic every day migrain that you can med the hell out of it to make it through day then i get the superman headbashing my life is hell migrains then he gave me i think four big doses of stadol and some vicodien to try before going in to er to try that if that didnt get rid of it givr the charge nurse his card and he will tell them what too give you normal what you talked about before "what works for you" i am in the 100 demoral and 100 phenergain cub but thats what stops mine every once in a will it dosent totally get a grip on it so he has them through in a shot of valium i know that sounds like a lot but its that tolerance thing
just beleive me get that doctor changed they will be glad to get rid of you hehe sorry but that stress with them dosent help so find a good one there out ther love to you all i suffer with you are in my prayers
you partner in pain

anthony budiselich <dadofthree@lisco.com>
Monday, July 23, 2001 at 03:23:13

I was wondering if anybody out there has had damage to their eyesight and memory
due to migraines. I am 30 years old and through the past 12 years, my migraines have
increased in frequency and intensity. The migraines are centered on the right side and
my eyelid droops and have lost about 30% of my vision field in my right eye. I dont remember anything that happens when the migraine
hits. The meds prescribed dont help and I always end up in the E.R. for demerol and vicadin.
Is this going to get worse? Why cant the doctors help?!?

Becky <patbecky@worldnet.att.net>
Saturday, July 21, 2001 at 19:36:57

Hello, All -

I just began getting migraines last month. I am scared. From reading your entries, it sounds like that's what I have, but I want to see a neurologist to be sure. One thing I get, that I haven't seen anyone write about, is a severe burning sensation (seems it's in my brain) on the right side of my head. It's almost like a current of electricity, but it burns! My doctor says he's never heard anything like that - and I think he thinks I'm overreacting. Has anyone heard of anything like this happening to someone? I can't seem to find anyone who's felt this. Maybe I'm not explaining it correctly.
Anyway, I also have extreme blurred vision, dizziness, pain behind my eyes, pounding headaches all over my head, stiff back, stiff neck. These symptoms last for weeks at a time and then go away for a while. This week, they are back. I can't work during this time and I am on the verge of losing my job. I have been prescribed Tylenol with Codeine, so I just pass out a an hour after taking it. How do you all cope with this? Has anyone lost their job? Has anyone tried to go on disability? I just don't know how to cope with day to day life.
Any advice would be greatly appreciated.

Thank you,

Stephanie Benanti <slbenanti@aol.com>
Wednesday, July 18, 2001 at 12:26:01

I have been reading the archives as I was searching a topic that lead me to this site. I decided to jump ahead to current posts and add my "story" as well.
I remember my first full blown migraine when I was young, maybe 10 years old. Then they subsided. I begain having occassional migraines as a teenager and my mom was sympathetic since she has suffered migraines frequently.
In my early twenties the "tension headaches" began, which I mistakenly referred to as migraines because they were quite debilitating. Actually, some of these were probably combination migraine/tension headaches.
It blew up a few months ago.
I took a Vicodin for a particularly nagging headache. I had some visual disturbance which I ignored. I ate dinner and began to feel horrible. The visual was not so bad, but a sharp throbbing pain developed on the left side of my head. I felt sick to my stomach. I have a recent diagnosis of IBS and thought the dinner had upset my stomach too much and that I was feeling ill as a result of the food.
I thought I would vomit. Then I layed down on the hardwood floor. And the cool bathroom floor. And my husband made cool compresses. Everything became blurry and the floor seemed uneven. I sat on the toilet and was afraid I would pass out (I have fainted in the bathroom twice before) so I called my husband to help me. The next thing I know I am violently ill. So I figure its out of my system and the more I can get it out the better. I have sweats and chills from purging but the pain in my head is insane and its like the pain is making me vomit. I hoped that once I had cleared my system it would stop but it only became worse.
My husband said we had to go to the hospital but we have a small child asleep in the next room, and no one to care for her. I kept telling him I would be okay; then he told me that I had been vomiting for hours and I knew I was in trouble because the pain was relentless. I was unable to take Phenergan or anything else orally or otherwise.
The trip to ER was hell. We have a little kid in the car at midnight on Saturday and I am puking the whole way. Every traffic light looked like it was filtered thru prisms, and every street light struck my eyeball, temple, and stomach. I told him to run the red lights if no cars were coming and if we were lucky maybe we'd get a police escort. I didn't consider that this was a "classic migraine".
He drops me off at the ER door so he can park. I walk in and the flourescent lights hit me like a brick and the floor started moving and I lost balance and I am holding a trash can and hurl into it and said to the receptionist "please help me". Haha. Sign in and sit down. I almost fell on my face and the triage nurse took me to her office. It was all so bright and fuzzy - yea, she said I had a migraine. Sat down and vomited and waited for I don't know how long.
Put in a room (wheeled in??) with a dozen other people and heave, hurl. When will they help me? Cold towels on my head, lights so bright. "please give me phenergan". Eventually they give me phenergan and imitrex and expect me to make a wonder recovery. The Dr and nurse check on my and ask how I feel but I could only dry heave, hold my head, whimper and CRY! make it go away.
FINALLY the doc ordered hydromorphone but it was so bad... When the RN asked how I felt I said "It still hurts only I do not seem to care as much". They were amazed that I was coherent and still hurting, ordered another shot of the stuff. For the first time I felt relief. I had hobbled half naked past numerous patients, back and forth to the tiny bathroom so many times against the Drs wishes but I told him if I couldn't go to the toilet I was going to have to go somewhere.
They discharged me after 6:00 am.
I followed up with a neurologist who was a total dipsh*t. I am scared because I have had "prodomes" since then and panic cause I don't know when the next doozy of a headache will hit me. Its time for my period now and i have been nauseous and napping and scared. Today my fingertips tingel and feel numb (anyone else hear of this?), the left side of my neck is knotted and occassionally I feel like its gonna rupture into a migraine attack.
In fact, I have had 3 such episodes in as many months.
Its frightening to not know what to do or where to go. My neuro called in some Prednisone but I am terrified of steroids. He said to go back to the ER if needed. My new extrastrength migraines LAUGH at Vicodin.
I tried some Stadol NS but I dont know where or how I could obtain an RX. It also significantly helped my IBS, which in itself is another story that plagues me. I havent gotten my health together yet and can't make any sense of it - so here it is in a nutshell. Why would Stadol NS help my IBS symptoms? And why hasn't Stadol NS been prescribed in a monitored setting for folks who have clinically diagnosed recurrent migraines? I guess its all about the War on Drugs. Plus, the ER might lose out on money if we could actually treat ourselves at home, though I suspect the ER staff would appreciate a lack of migraineur business!
Thanks for reading and I will be posting again. Its nice to have a place to vent. My stomach is so again tonite but at least I am not in the ER, knock on wood and be grateful for what I have.

serena <serena25330@hotmail.com>
Sunday, July 15, 2001 at 00:42:55

It all started when I was about 13. I got minor headaches, but it wasn't to the point where I had to stay in a dungeon. School was good I had A's and B's and lots of friends. I played Softball, volleyball, and basketball. As I was growing my headaches started to get worse. I couldn't go out with my friends because they didn't understand how bad these migraines were for me. School started to become a torture, the teachers voices, the bells, my friends were always screaming and yelling, and when I was in the car with my friends they turned up their sterios as loud as possible. I turned my head towards the window and door, I cried so hard but I didn't want them to see me hurt. I finally told my mother and friends, my mother knew how much pain I was going through but of course my friends always complained when I asked them to quiet down or turn the sterio down. It got to the point where my friends would tell me that it was just a headache and that all I did was complaine. In the mornings when I woke up to get ready for school, I could hardly move. It was as if I was paralized. All I could do was lie there and cry. Every morning I had that migraine, then every evening, then every night before I went to bed. I couldn't go to school, I couldn't concentrate. My friends and I grew farther and farther apart as my life got worse. It finally got to the point to where I couldn't drive because I always blacked out or got dizzy. I was passing out all the time, and I had to go to the ER about 3 to 4 times a week. Every minute of every day I had a constint migraine. They at first labeled me as a hormone/period thing. That it would pass and not to worry, I would be back to school soon. I ended up missing school, homecoming, prom, nights out, and most of my friends gave up on me. My life had taken a turn for the worst. I bounced from doctor to doctor, medication to pain killers. I tried every drug on the market nothing took the pain away for even a minute. They said I had Intractable headaches/chronic daily migraines. I was put in the hospital 3 times and again later on. My trips to the ER moved from 3 to 4 times to, every day. I was living my life with constint pain. There were many times I wanted to just kill myself and get it all over with. I'm a teen, I shouldn't be spending my life laying around on drugs in a dark room. I couldn't even keep up with my home and hospital tutoring. I finally gave up, I went out and got drunk every day/night......and I smoked weed like it was medication. Every hour, I spent all my pay checks on these things. My pain still never went away but it was easier to put a smile on my face even when I wanted to crawl in a dark corner and cry. I hit two cars when I went through that stage. I would turn to look behind me and black out. When I went through the weed and drinking thing, my friends hung out with me again. I couldn't take the pain anymore. My mother finally got me to stop. We switched doctors almost every month. Now, my life is laying in the house on a couch with no lights and no noise. The only time I left the house was to go to the doctor. I have had doctors tell me they didn't want me as a patient anymore, and others just gave up on me. I am 17 now, I have stuck with these headaches/migraines for about constant 2 and a half years. My life is in a dungeon. I lost my job, all of my friends, basically my life. The drugs that my latest doctor put me on was at such a toxic level if I had any problems with my heart I could die. The normal level in your blood is suppose to be at 250 I was at 320. The next doctor told me he wanted to put me in rehab to get me off these drugs. I was told that we couldn't do it at home because of the risks. I am now proving him wrong. I am going through anxiety attackes and withdrawls from all the drugs. I am almost drug free, but not pain free. All of my hopes and dreams are destroyed. I will be 18 in about 4 months, the biggest day of my life.....but it won't happen for me, I'll turn 18 and still be bedridden. I can't take showers standing up, I can't go outside without sunglasses or in to a public place without ear plugs. I just hope one day I will find that drug and it will turn my life back on the good track. I won't give up.....even though almost everyone already has given up on me. I will finish my dreams when I am able! I will! I hope. The symptoms: numbness, cramped legs back arms, dizzy, blury eyes, black outs, passing out and hitting my head and other things. My memory, I can't even remember what day it is....things I would never forget, are forgotten. There are more things that go wrong with me but these are the basics. It's sad to see your life pass you by. You never know how good you have it until it's taken from you.

Jessica <Krazluv777@aol.com>
Friday, July 13, 2001 at 12:40:18

Hello again!

I recently posted my letter of pain and suffering 2 days ago, with my e-mail as zebthekingcat@hotmail.com, and I am announcing to anyone still interested in e-mailing me that I have had to change my e-mail since then. It is now eniloracdnalloh@hotmail.com. As for my headaches, I have not had a severe one in an entire week!!! YAY!!! I am keeping my fingers crossed that the peacefulness will continue for me, and I am also praying for all the other sufferers out there, that one day soon, you shall know some peace as well!


caroline <eniloracdnalloh@hotmail.com>
Thursday, July 12, 2001 at 22:01:48

Hi~I can relate to the stories because of the pain, but specifically to the posts by sufferers of classic migraine. I have had classic migraines since I was 15, and for years took Vicodin for the pain. Then at 20 I was put on Midrin which I took at the first "blind spot". Then from 21-22, for over a year-and-a-half, they stopped (I was taking 1 Midrin daily for prevention). 3 1/2 years ago, when I was almost 23, they started again even though I was still taking the Midrin. Anyway, for the past year I have taken 100mg of Tenormin daily which has curbed the frequency (from 2/weekly to maybe 2/monthly). A month ago I began taking 2 aspirin daily in addition to the Tenormin and have not had a migraine since. I believe this may be the result of the aspirin thinning the blood, thus decreasing the amount of platelets that "bunch up". Anyway, the worst part for me, too, is the blindness/vision problems and the confusion that happens with a migraine. It is TOTALLY disabling. I currently live in a remote area that does not have a neurologist in the area, but I will soon be going to one. That is the best advice that I can give: find someone who SPECIALIZES in this. Maybe the migraines won't totally stop, but possibly they can be controlled to recoup some normalcy in life. Otherwise it's just terrible. Best of luck!

Thursday, July 12, 2001 at 18:23:40

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