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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Please note: Posts are not automatically added to this journal. If you desire a prompt posting/response time, please use this site's discussion forum. Also, please try to use the discussion forum for question/response types of entries. The journal is intended to be a place to accumulate experiences and information, which can be used as a reference to those who wish to learn more about what it is like to be a migraine sufferer. Thanks!





I've had a headache for over 70 days with various degrees of pain, but its never gone. My doctor chalked it up to nasal problems and I had surgery two weeks ago and no relief.
He told me to take four Advil and Two Tylenol every six hours. No Help. In fact, I think it got worse. Went to the ER last Saturday and they gave me a shot of Demerol (Spelling?). That took away the sharp pain, but the pressure never left. My husband has some percoset for his kidney stones and I have been taking them and they have provided some relief. I feel Nauseous and very dizzy. I can't focus. My husband is typing this for me. Does anyone have any suggestions. The earliest I can see a neurologist is next Monday.

Paula` <aussieps@yahoo.com>
Tuesday, March 2, 2004 at 20:12:08



This site is wonderful! I did not realize that so many folks were going through the same thing I am. I am 52 and started getting the very painful migraines when I was around 45. I awoke one morning with what felt like someone beating me in the right eye with a hammer! I was crying and just had no clue what this was about. I called my OBGyn and he told me it sounded like a migraine to go to Emergency Center and he would call ahead and order a shot for me. I did and it still lasted off and on for about 3 days. It was only a few weeks before it hit again and that was the beginning of many medications for me. I now take Imitrex Nasal Spray as well as Imitrex injections. They have become so frequent (5 out of 7 days) that I am trying preventatives. The first was Inderol (BP med). It made me so nauseous and sleepy that I had to stop after 4 weeks. I was told that those side effect may pass after a couple of months. I could not deal with the headaches and the vomiting that goes with them in addition to what the Inderol was causing. I am now on Zanaflex (generic - tizanidine) - only about 6 days so far. No side effects noted yet, but I am to increase the dosage up to 1 tablet twice/day and 2 at bedtime. I am only on 1/2 tab. twice a day and 1 tab. at bedtime. Has anyone had any luck with this drug. When I was around 35 I started to get the aura - did not know what that was until I started reading this column. It would start as a zig-zag light pattern flashing out the corner of my right eye and would get bigger and bigger until I could not see at all out of that eye and had to lie down just because I could not see. It would last about 30 minutes and when it was over, I might have a very mild headache - nothing that Tylenol did not take away. I do not have the aura anymore - just this severe pain behind my right eye. Looking back now I realize that was probably the beginnings of the migraines for me now that I know many people experience this. Did anyone else get the auras years before the real pain started? I am still trying to understand what the monsters are all about and why they insist on attacking some people. Thank you for reading. Comments appreciated.

Patty <raceyme2003@yahoo.com>
Tuesday, March 2, 2004 at 12:23:18



Hi! What a great site this is - I'm so glad to have found it! Great to know you're not alone in the 'migraine world.' I have had migraines for about 15 years now. At first I didn't know what they were - just thought I had a terrible headache and usually went to bed with an ice pack. Of course, I had 3 small children then and you did what you had to to keep going. My migraines have gotten worse over the years.

The main thing that seems to trigger my migraines are smells. Especially perfume and lotions. I can't even look at a magazine that has a perfume sample (or smell) on it. I can't wear perfume or lotions. We've switched to everything being 'perfume and/or fragrance free'. Once I get a whiff of perfume (even if I like the smell), it only take literally a couple of minutes until I have a migraine that totally disables me.

As you can probably guess, this is a nightmare for me at work. I've talked with our HR President and she understands and tells me I have the right to have a safe workplace and that she understands. She told me to speak with those that I work with regarding their perfume. While I know it's not fair and I cannot ask them not to wear perfume, I have spoken to some of the people I work with and they have been very understanding. However, there's a couple who seem to think it's funny, and love to come in my office with a cloud of perfume surrounding them. Or they like to light candles (another major trigger for me!) and the whole office area smells. I am truly a very nice person, but I have to work with these people on a one-to-one basis a lot, as I am an Adminstrative Assistant/Office Manager and my co-workers come to me all the time for things. I literally have a can of Lysol (fresh linen) that doesn't seem to bother me, and I spray it as soon as the "offending" person leaves the room.

My question is - has anyone else had this situation and how have you handled it? I am home from work today (still have a migraine) after leaving work early yesterday because of the perfume.

Also, does anyone know of anything to take on a daily basis to help with this? I take Maxalt-MLT (10 mg) when I get a migraine and it usually works. But I have a fear of taking a presciption medication so much.

My doctor has also put me on something he wants me to try at the first sign of a migraine - takine one regular aspirin (325 mg) with one prescription pill of Promethazine (50mg) - for nausea - but I have to be at home when I take these, as the Promethazine puts me to sleep. When I wake up, the migraine is sometimes gone, or at least dull, but I am very "goofy" from the Promethzine.

I have been getting about 2-3 migraines a week lately. Any suggestions would be appreciated!

And thanks for this site - I don't feel so alone or so 'odd' - I'm not sure that those who have nevered suffered from a migraine really know what it's like and sometimes I think they think I'm just being a baby about having a headache.

Darlene <shortshoop@aol.com>
Tuesday, March 2, 2004 at 10:40:20



Just a quick comment...
I had something else to add ( of course it was after I had already posted the last entry!) In the event of sheer desperation during a migraine, like if you are at work and know you cannot leave, drink 2 Redbulls and 4 motrin. It kills it nearly within minutes and the rebound isn't as bad as you'd think from the caffine. My rebounds come later after I'm home and I can usually sleep them off overnight after a round of migraine meds...

Lisa <nikkyscout701@yahoo.com>
Monday, March 1, 2004 at 11:22:01



Hi all!
I have just visited this page for the first time today. I have only read a few of your entries, but believe me I feel everyone's pain. I was officially diagnosed with migraines about 8 years ago. At first they were once or twice a month and pretty controllable once I was given a prescription for Zomig. I do have aura's nearly always before an attack and usually I could knock them out if I took a pill during that time. About 2 years ago that stopped working. The frequency increased dramatically to about 3-4 times per week. I was out of my mind for about 6 months living in near constant pain. I saw my obgyn during that time for a routine checkup and one of her nurses had started taking a birth control pill for the same reason. The pill is called Mircette. I have been on that since then and the frequency has returned to what I feel is a 'manageable' rate - about 3-5 per month. The pill is a progesterone based pill and seems to keep the migraines at bay for most people who take it. The generic version of the pill DOES NOT WORK as I have found out by trial and error, so if you get a prescription for it make sure your pysician marks the 'brand medically necessary' box on the prescription. Fight with your insurance company if you have to like I did to get the brand name. I still use my zomig to try and alleviate the attacks, but it is not as effective anymore. My family doc gave me some samples to try of another med called RELPAX, said is daughter had some luck with it for her migraines. It works ok, but takes allot longer to start working and I have found I need to sleep after I take it for it to completely releive my migraine (not always possibly, obviously) My attacks are still usually severe - nausea, dizzyness, spots, ringing in the ears, and yes the vomiting occasionally but at least they are not every day-
I have also recently changed from Lexapro to taking Paxil CR for my depression and the depression meds seem to help the intensity some.
So that is my two cents on this. Hopefully it helps someone out there. Give it a try - can't be worse than the attacks...

Lisa <nikkyscout701@yahoo.com>
Monday, March 1, 2004 at 10:57:52



I am currently on topamax 100 mg for migraines and it has helped i only have 1 migraine a month. I use to get anywhere from 3-8 but the side affects are drivings me crazy. I do have to say I am a petit 41 year old woman with a low tolerance level but my concentration is way off, my memory is bad and I feel tired off and on. So I don't know what's worse the pills or the migraines. I guess if you get migraines alot topamax really does help but if you only get them 2-3 a month I wouldn't take them.

ileana <ilyred@aol.com>
Monday, March 1, 2004 at 10:10:49



Hello,

I wanted to share my experience in hopes it will help other migraine sufferers. I have had severe, often debilitating migraines for decades, and they became worse as the years passed. I took beta-blockers for years, as well as every new migraine drug that came on the market. When Imitrex lost its effectiveness (I had taken so much of it) and I was at the point of asking my husband to shoot me, I went to a famous headache clinic in New England. The doctor put me on a whole new group of medications to try, including megadoses of vitamin B-2. Within a month I was very much better, and to my suprise, he said it was probabaly the B-2. He removed all the other meds one by one, leaving me only on 400mg of B-2 daily - and my life was transformed.

This doctor told me that little research had been done on B-2 at that time (this was several years ago) probably because there was not much money in it. But he said the B-2 appears to either work miracles or not work at all on migraine sufferers, and it appears to work on people who see the "aura" with their headaches.

After several years, I have stopped taking the B-2 and still feel fabulous. I get migraines, but they are completely controllable with Zomig.

I asked the doctor if it was safe to recommend B-2 to others and he said it was, so give it a try - 400mg per day.

Never give up!

Deborah Mathies
Saturday, February 28, 2004 at 06:57:58



Today was a good day. I didn't have a migraine. I'm 52 years old and have had migraines since I was in my early thirties. I have read many theories what causes this "beast" to visit my head. On one site I read where stress causes migraine. On another, I read where stress does NOT cause a migraine. One thing that I am sure of, now that I've found this forum, I am not alone. I take Imitrex 50 mg if I feel the sensation of a migraine coming on. I do indeed throw up if the pain is too intense and (God forbid)I have allowed my perscription to lapse. I have tried anti-depressants. I don't like being forced to sleep. I have to be on my toes at my job. In the last 30 days I have had 15 days of migraine. The "bugger" lives behind my right shoulder blade and works its way up my neck, through my ear and settles on the right side of my head.
I have never seen an aura. I only know I feel it in my shoulder constantly. I'm trying to shake "the beast" up by having acupucture treatments and some deep tissue massage. I've had two massage treatments just recently and will have my 7th acupuncture treatment tomorrow. I think I'm on to something. The Imitrex has probably saved my life and perhaps prevented me from having a stroke. However, the Imitrex scares me, too. I'm exhausted after taking the medication. My skin becomes extremely sensitive to heat, such as warm water when washing dishes or taking a shower. Those reactions go away in about 3 or 4 hours after taking the medication. The migraines have been on attack so much lately that I believe it's affecting my short term memory. It's becoming very hard to concentrate. Today was like surfacing to breath fresh air after being held under water for too long. My thoughts and prayers are with everyone who suffers from his hideous disease. I will never give up hope. I'm too ornrey. I'm the head switchboard operator of a large insurance company. I HAVE to be upbeat, friendly and accurate. I plant a smile on my face and voice each day... even with the migraine. It's getting more and more difficult. The emotional drain from fighting the pain and working through the day is pretty awful. I usually wake up with a migraine. I didn't this morning. If anyone is interested, I will let you know how the acupuncture treatments and deep massage therapy turns out. I'm going to
give it a real try and not give up too soon. The therapists working on me are truly wonderful. I believe in miracles.

Trudy D'Armond <trudy@tx3.net>
Wednesday, February 25, 2004 at 19:57:33



hello, i'm 43 years old and have had migranes for 5 years. my mother and sister had them bad. i had aura years ago but didn't know what it was. since i've started having migranes, 2-3 a week, i have been to three neurologists and every medicine there is for migranes. nothing has helped. my regular m.d. now prescribes nubain inj. for me in case i get one. nobody seems to be able to help. since i've been on all th medicines, i have high blood pressure and other medical problems. i'm tired of trying to find the perfect pill, so i'm going to hope that my doctor keeps prescribing nubain or something that will knock me out when i have one. thanks for all the information. i know i'm not alone and am not a druggie.

linda <hopsonlw@wmconnect.com>
Sunday, February 22, 2004 at 13:11:40



Hi my name is monique and I am 39 and have had migraines since I was 8 years old. At first my parents and doctors did not know what they were for many years. When I turned 17 I saw my first neurologist and I was finally! diagnosed. The causes were many. Foods. Menstrual cycle when I got older. Now I am just learning the weather affects me and of course good ol stress.I have gotten them so often in the last four years I have had to go on disability. Three months ago I started a new drug to prevent them called topomax. I have tried so many others I am hoping this will help. My neurologist has recently put me on a very low dose of a medicine called amitryptiline to be taken in the evening along with the topomax. I also am trying acupuncture and get nerve blocks in my neck once in a while. My hope is to one day no longer have more than four or five in a year! If anyone out there has any suggestions, something I or my doctor might not have thought of, please let me know. If you have any questions or comments please let me know too. Thank You, monique

monique
Wednesday, February 18, 2004 at 12:14:02



I am 46 and have had migraines for about 14 years. My Mom and her father had them too. My sister does not. I had them for years not knowing what they were until they got more severe and frequent. I see a neurologist,a Chiropractor, and my family Dr. for treatment. I have tried beta blockers, calcium channel blockers, and anti depressants as preventatives. I take Imitrex as needed and it works for me (100 mg). I have had a total hysterectomy(for other than headache reasons) 5 years ago and unfortunately it worked for only 6 months. I have been hospitalized about 4 times for unusual, very severe pain (the kind involving screaming and crying and throwing up). Usually I intervene before they reach that stage. Last year I was diagnosed with Epstein Barr Syndrome (doing well from that now), and I have been diagnosed with allergies as well. I get frequent sinus infections. I have aura and now am finding that in general, I have memory problems which I feel may be a side effect and which have not gone away.
I have an outgoing personality - I am a singer and actress at a church in front of thousands, but now I can't depend on my health or memory or personality to be consistent. I'm tired of whining and bowing out of everything. I am becoming more introverted. I have been a stay at home Mom for 18 years and want to work but after ony one month,have already had to be carted off to the hospital(migraine - which was due to tying to tough it out with no meds) which was so embarrassing. My patient husband and kids are just used to the routine, unfortunately.
I want to work, play tennis, sing and paint, but migraines frequently slam the brakes on my life. I normally have 4 or 5 a month but lately they are almost daily.
Okay, I feel a little better already. It feels better to complain to those who understand than to those who do not.
I will not let this beat me and pray for a cure and an explanation about this wretched disease.
Cindy

Cindy <cbmossey@bellsouth.net>
Friday, February 13, 2004 at 11:25:58



I totally feel for everyone on here. Most people don't know much about this disease until it hits them. That's when they realize that a migraine is not "just a headache". It is so hard for anyone else that doesn't have them to realize just how painful they are. My advice is to keep on trying anything and everything. Bring someone with you to your doctor's appointments, so there's someone there to help you get through to your doctor. Don't let doctors string you along. They like to suck money out of you and not help you, because they can. And because they don't realize what you're going through. If you can find a doctor who's had migraines personally, you've been blessed! Don't let yourself be walked on by these doctors (like I have)! Ask questions; be demanding. And if you're lucky enough to have a spouse for support, let them know that this is your "in sickness", and that you need their support. Let me tell you, being single with this is not fun. Going to appointments alone, going to work and then coming home with no one's arms to collapse into...If you can work, do it. If you can't, fight for any rights you have. Chances are though, if you stay busy and try to work, you might have a better chance of not "noticing" the pain as much. It's still tough, but at least you don't have time to feel sorry for yourself. Good luck, everyone!

I hear ya!
Friday, February 13, 2004 at 09:19:39



Hello,

My fiance, Shawn, has just been hit with one of the worst migraines he's had in a long time... it seems to have been set off by a highlighted document he saw at work. The pattern and colors on the paper sent him straight into red-alert. This has happened before with a blue-striped dishtowel and blue checked pajamas. Also, when we're driving at night, brake lights and bright headlights mess with his head (but don't give him instant migraine).

Has anyone else heard of or experienced such an effect from a certain pattern or color or combo of both?

He's seeing a doctor next week (just for a physical). What should we request the doctor look into? Shawn had a brain scan about 8 years ago and all was normal... maybe he needs another one.

Thanks and good luck to you all,
Anne

Anne <buzzcatt@yahoo.com>
Tuesday, February 10, 2004 at 20:28:18



hey all my name is Greg and i have been living with migranes since i was a kid i need some advice on how to make a living with these migranes and i need to also know what you guys did to make it with your migranes so basically i need your HELP!

Greg <Cabbageman666@yahoo.com>
Tuesday, February 10, 2004 at 14:41:25



Hi again Everyone,
Just as a review: I am a 31-year-old female who has suffered from migraines since 14. The migraines have increased in frequency and severity every year since then. I get the usual stuff - "marching ants" aura, nausea, intense throbbing or sharp pains on the right side of my head, down my neck, into my shoulders, face...They usually last 12 hours or 3 days. I've been on every class of migraine preventative and abortive drug - Calan, Propanalol, various anti-depressants, beta-blockers, etc. Even the most risky ones didn't help - topamax & Depakote. I've also tried all of the triptans. I've overloaded myself with NSAIDS. I've had an MRI, x-rays, etc...

I saw a specialist at the UPMC Headache Center in Pittsburgh PA on January 30. His name is Robert Kaniecki, MD. He is a neurologist, and he also suffers with migraines. He diagnosed me with severe chronic daily migraine with aura. He is fantastic. His goal is to take me from 15-30 attacks a month, down to 5. He put me on Effexor XR, which I never tried, and Imitrex 50mg. I've tried the Imitrex, but not at that dosage. He told me to stop taking the NSAIDS completely because they were making things worse. I knew that. But I felt I had no choice. So I am supposed to "ride out" some of the bad days until the preventative Effexor kicks in, and ration the Imitrex pills throughout the month (2-3 per week). As you can probably guess, it's been less than 2 weeks, and I'm in hell. But the attacks appear to be a little less severe after 1.5 weeks. I'm not up to the full dosage of Effexor yet, so we'll see.

Dr. Kaniecki said that there is no cure for migraines. According to him migraines are a result of a sensitive nervous system and a lack of serotonin. He said they are genetic. Only 2% of the population have my problem - chronic daily migraines. But almost 20% of the population has migraines.

That's a lot of people. Too many people are suffering for there not to be a solution out there. Don't give up.

Ty <tysuper@hotmail.com>
Tuesday, February 10, 2004 at 12:17:01


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