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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I just found this site and I'm already feeling a little better. I don't feel as though I'm going as crazy as I did when I woke up this morning. I have been suffering from migraines since I was around 14, that was when I went to my first neurologist anyway. I have tried so many different drugs, and so far the only thing that works for me is Imitrex. I have been on preventatives, the ones I remember are Prozac, Depakote and Topamax. For those of you taking Topamax, I had an extremly bad reaction to it. I woke up one morning and couldn't see! It was the scariest feeling and I had no idea what was wrong, I thought it was an optical migraine. Everything was so blurred I couldn't see my face even if I had it nose to mirror.

My current problem is that I am 7 weeks pregnant and have had a migraine for a week. It will not go away. I have an appt with a new neurologist this afternoon, but I don't have much hope that she will be able to help. Have any of you experienced migraines during pregnancy & what did you do to releive some of the pain. I cannot go 9 months in this constant pain. I don't know what to do.

Danielle <DanielleLePage@hotmail.com>
Tuesday, February 10, 2004 at 09:33:54

I have been diagnosed with migraines going on 3 years now. But I have been suffering them every now & then since I was a kid (I can't remember @ exactly what age). I was just reading the entry made by Elsie Lodde & I emphatize with her because I am experiencing the same things, from the memory span to treatments/mistreatmemnts at work. Whenever I call-in sick & I go back to work the next day some of my co-workers who hadn't experienced a migraine headache in their life always give me "the look". Like I am faking my ailment just to get out of work. Regarding the medication, my doctor has had me try so many kinds of medication before but they never worked. Now, he has me on Topamax and this one seems to control it to where I only have once a month, on or before my monthly periods.

Dolly De Leon <DAgent2000@cs.com>
Sunday, February 8, 2004 at 11:36:43

Hi fellow sufferers. I first got migraines when I was around 10 and they didn't seem to be intense until the late teenage years. I pretty much got them along my menstrual cycle, every 30 days when I first hit puberty. I managed to pinpoint certain triggers like lying on my stomach or wearing sunglasses, I know they sound crazy but when I saw a pattern I eliminated it.

I didn't get one for 6 years until this week. I came home from a weekend in the mountains and the following day at work at 9am there were the lights. To my surprise the excruciating pain of a headache didn't follow. Then again later that night at 9pm were the lights, the two days later the lights and numbness again. This time I feel like my eyes are not back to normal and neither is the coordination on one side. Has anyone experienced this before?

Also I've been on the oral contraceptive Ortho Try-Cyclen for 6 years and I think that maybe it's not working as well as it used to. Is anyone on any kind of birth control shot with a reoccurance of migraines?

Jan <january17@aol.com>
Saturday, February 7, 2004 at 13:12:58

Like many of you, I've also taken every medication that exists. I started with non-prescription drugs at my first migraine (about 10 years ago). I've tried to get help from my primary physician who prescribed vicodin. The first couple of times it worked but then only gave me "rebound" headaches. My Neurologist prescribed Imitrex and Maxalt. Neither worked. Now, my headache specialist prescribed me Relpax which actually works. The only problem is now I'm taking it more than three times a week which is the frequency of my attacks. I may be overusing the drug but I'd almost rather overdose than deal with the pain (I'm sure most of you know what I mean).

To sandj71...
My headache specialist requested that I take Topomax as a preventitive. I looked online to read about it and got too scared to take it. Please let me know if it works for you. I think the part about "possible seizures" scared me although there are possibilities with any of the drugs I've taken. I hope it works for you because I understand your pain.

To chovanec...
I was recently fired from my job for missing too much work due to migraines. Actually, they told me I "violated company policy" in some silly way so they could avoid a lawsuit. I was protected under FMLA which protected me from being fired for my condition. But, I was frequently missing work due to pain and also due to the zombie affects of the drugs I was taking. If you can prove you were fired from your job due to your condition, you should get some legal advice. I'm not sure if it's the same unless you were protected under FMLA but it doesn't hurt to try.

To all,
I undersand what you all are going through. I'm not sure how much more I can take. I started reading a book called "Migraine: The Complete Guide" written by The American Council for Headache Education with Lynne M. Constantine & Suzanne Scott. I've only read through the first couple of chapters so far but I hope to learn something from it. It seems that Dr.'s can't help me so I'm not sure what else to do at this point. Good luck to you!!

Sandee <sandeemhill@yahoo.com>
Friday, February 6, 2004 at 03:40:14

I have --luckily I supposed-- only been suffering from Migraines for a little more then a year. It started in November of 2002, where I had a headache every single day for over a month. Finally I went to the doctor who told me it was migraines I was suffering from. I thought it was strange, I heard migraines were horrible and I was coping fine with Motrin, but they never went away. He prescribes Maxalt, and for the first time in over a month I didnt have a headache. I basically had a headache every day until mid January. 2 1/2 months with this constant pain behind my eye, and then it was gone. Through out the year I only got a couple of migraines. I found cheese definately sets of my migraines, but I cant find any other triggers. I had a couple of really bad ones, the ones I typically thought of when I heard of migraines. Nausea, sensitivity too... well everything. I thought that it was strange that I have suffered from them every day from Nov- Jan. So I went to an allergist, and found out I have allergies every season but Winter. The doctor was quite knowledgable about Migraines, and he told me that there is no corrolation between allergies and migraines. I wonder if I should believe him, because it doesnt make sense how my migraines seem to be seasonal.
I never really took the time to research my Migraines until recently. My doctor diagnosed me with chronic migraines, and he says that many women have them til menopause (and since I am only 25 that seems too far away). He put me on Verapacil to prevent migraines and maxalt to stop them. I am quite relieved when reading other people talking about their stories. I am so relieved to find how many people have reported that they can not focus and seem to have a "brain cloud". I have been wondering why my attention span is shorter, and why I feel like I am less intellent now then 10 years ago. I am relieved knowing that I am not the only one who has this problem, and that there are more people out there who understand it. People with out migraines always have a cure, but dont understand. I dont know how many times I have heard "you should take tylenol and a pepsi".... dont you think if it was that easy I would have done it?
I guess we are all different, but in so many ways we are the same. Bonded by pain, frustration, and medication. Everyone wanting the same thing, a cure, or even just a short relief, a break from the numbing pain. TO remember what it was like before, when the sound of a screaming kid didnt pierce thru you like a sword. Well to everyone out there just know there are people out there who understand and sympathize, and I dont mean like your co-worker who says "that's too bad" because it just seems fake.

Elsie Lodde <elodde@msn.com>
Thursday, February 5, 2004 at 22:41:19

I found this site the other day while having an oncoming migraine at work. Monday, a migraine began at 3 in the afternoon and lasted 30 hours. I stayed home from work Tues and ret'd Wed only to leave again @ 1, as I got another migraine. I barely made the drive home as the Vicodin I had taken made me so faint; I had to keep the window down all the way and let the freezing air in to keep from passing out.

I am 50 and have had migraines since I was 8 or 9. I have yet to find an effective preventative or pain relieving med. I take a beta blocker but don't know if it does much as I get 5-10 migraines a month-usually in groups and then I have a few days without them. Recently, I saw a neurologist, again, and she prescribed Axert but I did not fill it as I am afraid to take it because of the heart disease in my family (I don't have it, but don't want to find out the hard way). My primary care and I have discussed Imitrex since it came out and she is adamant that I not take this family of drugs, due to the heart disease history in my family.

I get light-medium and severe pain migraines. I have never thrown up but can't tolerate light, noise-all the classical stuff. The best thing I have found over the years is dyphohydromine(sp?) which is found in Tylonal PM, Dramamine, synus meds-all OTC stuff. I can either knock myself out and sleep (the best relief) or make myself dopey and sometimes tolerate the pain (if, its not too bad a migraine) to make it through the work day.

I will be reading this site and posting.


dennis mccowan <dennismccowan@yahoo.com>
Thursday, February 5, 2004 at 11:37:12

Please enter a message. :-)
Hi, Has anyone taken Topomax for migraine prevention. I was put on it today 25mg for 2 weeks, then to start on 50 mg. Has it helped anyone and what are the side effects. Thanks for any info. Sandy

Sandee <Sandj71@frontiernet.net>
Wednesday, February 4, 2004 at 14:56:53

Hi, I am so glad to find out I am not the only one with these problems. I have suffered from migraines since about 3rd grade and over the past 6 years they have gotten progressively worse. I was never able to pick out triggers before, but after the birth of my second child I can no longer drink red wine, which is my drink of choice, without getting a full blown migraine. I haave been on every preventative there is and now the only thing that ever aleviates the pain is Stadol, which I have to refill every 10 days, because I pretty much have migraines daily. I was just fired from a job that I loved, because of my migraines. I don't know if I have any legal recourse, because I have no control over my migraines and when I get them. When I do get them they are definately dibilitating and incapacitaing. Has anyone else had any experience with being fired for having migraines? Or do the daily sufferers not work. It is very hard to raise two girls without daily migraines, but even more difficult when you cannot function most of the time.

Cherie <chovanec@bellsouth.net>
Tuesday, February 3, 2004 at 18:14:46

Hey everyone, I was just searching the net for info. about migraines and menstration. For me, it doesn't seem like they are linked, but I was thinking they could be a connection.

Anywayz, I'm 15 and suffer migraines alot. My story is of no comparison to any of yours, but I'm trying to find some type of relief. I was in the ER on the Friday after Thanksgiving. There, I had an IV, CT scan, blood testing, and even 2 doses of the migraine "cocktail." I had no relief. I'm a small person, only 100 pds. and 5'5". The dr. said any "normal" person would have been feeling better with the first does, much less the second.

All I'm asking: Is there any help?? I have an appt. for a neurologist on Feb. 10th, but I dont know if that'll help. Im already on Promethizine and Naproxen. I also always take advil and some type of sinus medicine. My dad's a dr. so he prescribes me some stuff. My parents are like ok, you need to see a neurologist b/c you cant keep going like this. I've tried: Imitrex, Amerge, Tylenol 3, regular Tylenol, IB Profen, anything and everything available. NOTHING works!

If I take my prescription, I either fall asleep or act like a zombie. I scare my boyfiend when i have these headaches... I get soo dizzy, nauseated, and weak. I also cant stand any light or sound. I even sleep for days and cant break the pain. If i get up, I feel like im gonna pass out. I also get that pounding, rushing feeling in my head. I feel horrible and cant seem to stay migraine free for 1 week. I mean as Im typing this... my head's pounding and i can barely sit up.

If anyone has comments or can help in any way... please email me. I dont know the reason I get the migraines but its scaring everyone when they're around me. Please, email me... Thanks and have a great day everone! Love, Anna

Anna <ima99angel1devil@yahoo.com>
Tuesday, February 3, 2004 at 16:12:49

Hello again. This month has been terrible for me, I've had to leave work several times to get shots of demerol and stay home from work and go to the doctor and get shots of demerol because its about the only thing that works, but I get embarrassed when I have to call the doctors office so much. I take imitrex for my migraines but it does not work.My migraines are getting worse it seems this week I had one every day but Monday, I'm currently taking 200 mg 0f Topamax that is doing me no good but making me lose lots of weight I'm fixing to have my nuerologist to take me off of that medicine because I can't afford to lose any more weight.

Sandy <GATORS9620@AOL.COM>
Sunday, February 1, 2004 at 08:56:25

First off can I say what a relief it is to find this site. I now know that im not going crazy.
Almost five months ago I began experiencing occasional dizzy episodes. This gradually got worse and are now accompanied with head aches. Not too severe but very uncomfortable and heavy.
My neurologist said migraine. The ct scan was clear. I am now on Beta blockers 160 mg daily and an anti -depressant called Amitriptyline which is supposed to be quite effective for migraine. Although the headaches aren't nice, my big problem is the now constant dizziness. I would really love to know if anyone else experiences this as their main symptom. I feel like a freak. I am 28 years old and im really struggling to raise two children while living with this awful condition. Any advice would be apprechiated.
Thanks for letting me rant, Ruth

Ruth <ruthmcmullan@btinternet.com>
Saturday, January 31, 2004 at 04:44:43

Hi I am new here and I am glad to have found this page. I am a 27 year old woman. I started having migraines an about 8 or so they got really bad at about 21. at that time I started taking imatrex and it helped. at about 25 I started effexor xr for pevention (after trying 10 other drugs with no succsess) well thak was good for a while but a year ago I started having daily migirnes. I tryed tons of meds but few worked the only thing that works right now is stadol for mod. pain and Dilauded for the bad one even 3 mg of dil. leaves me with some pain. I went to the same pain doc for several years but he started being rude when I would tell him things did not work so I swiched to another. At me first appt he said my last dr had told him I was focousing too much on the stadol so he would not give me any narcotics. well when its the only thing that helps my daily horrable pain what am I supposed to use? the things that don't work? After that My primary doc sent me to a nuro who gave me some stadol and is seding me to the u of michigan. My primary doc also gave me a note saying I could go to the er two times a mo. to get a shot of dilauded because they would not give it to me any more. well that was fine untill this week I went in to get a shot and the dr at the er said she did not use narcotics for migraines because studys show id doesent work. I tryed to expaine my history and that I tryed so many things and that was the only thing that worked but she just got rude. She said she would call the dr on call for my doc to see what they said. my doc was not on call so she talked to some guy who had never met me and did not have my chart so of corse he agreed with her. They wanted to give me compazine but as you probably know it makes you feel like crap and it does not work for me. the next day I went back hopeing to get another dr well I did but he tells me he can not give me any thing because my dr partner said not do give me narcotics the night befor so that over rules the care plan from my dr. so I need to get another care plan. I was so frustrated I started crying. I am so sick and tired of being treated like I asked to to have horrable pain every day just so I could get a shot of pain meds twice a mo. So I gess I have to call my dr and hope se will give me another care plan or if she too desided I am not worthy of pain meds.


jenn <jenellis2001@yahoo.com>
Monday, January 19, 2004 at 13:27:30

hello everyone i am a 37 year old female from england i have been suffering from migraine since i was 14 these last 3 years have been the worst i have been having attacks almost daily at the moment i am finding it very difficult to cope my docter keeps changing my medication to try and find something that will help me,some days are better than others i am glad i have found this webpage as it is good to here from so many of you

tiggy <besty@bushinternet.com>
Saturday, January 17, 2004 at 10:21:24

migraines since hysterectomy in 1983

add to that severe allergies to dust mold cat dog opak and plants

add to that sinus surgery May this year
Add to that reflux and hiatal hernia (Protonix treated)

Did much better.
Need advice on prednisone. Only time I feel likemyself is when I am on it. No ear ringing no headache no stuffiness and head pain.

What are reasons MD's reluctant to prescribe?

betty <biaginasola@aol.com>
Friday, December 26, 2003 at 07:41:05

I have had migraines since childhood but for many years I didn't know what they were. Growing up and as a young adult I had frequent headaches but I only learned years later that they were migraines. Even though I could pretty much "predict" one of these headaches if I consumed the "wrong thing", like brie cheese, or red wine, or chocolate at the wrong time of the month, and even though the pain was often preceded or accompanied by light/sound sensitivity, a feeling of weakness on one side of my body, etc. etc., I never thought to take my pain to a doctor because I didn't identify these symptoms as being related to migraines. I just chalked it up to studying hard and fatiguing my eyes.

Unfortunately, even if I had suspected migraines, I would have cringed at the thought that I was one of those spineless, immature, weaklings, who gives in to every little challenge of life and goes running to a doctor for every little twinge. At an early age I was taught to believe that PMS, menstrual cramps, migraines, asthma, certain skin disorders, and even epilepsy were complaints that the weak-willed used to get out of taking responsibility for their lives. In my teens, responding to my mother about why she had to buy aspirin so often, I explained that when I felt a headache coming on I would take two aspirins at the first twinge and could usually keep the headache from getting worse but that if I failed to take the aspirins on time I would get a headache that wouldn't quit. She drew herself upright and self-righteously and proudly scolded that she couldn't see why I needed to take as much aspirin as I did - she hardly ever had to take any. She said that people had become too weak and were downing all medications far too quickly and frequently. Aspirin?! I remember wondering why she bothered having any in the house at all if we weren't supposed to actually take it.

Then, about 18 years ago when I was entering my 30's I had my first pre-headache visual aura. Scared the heck out of me, I tell you. My father had had a stroke that wiped out part of his peripheral vision and I was having the same problem. A whole slice of my vision was just suddenly gone! So, of course, I called Kaiser. There were two possibilities - a stroke or a migraine was coming on. Since I'd never had this happen before the nurse urged me to head to the E.R. just in case. I didn't have any other symptoms of a stroke (and as a former EMT I knew the other symptoms and wasn't in a complete panic, yet) so I told her I'd wait a little while. About half an hour later my vision suddenly returned. Believe it or not, since I'd never had my headaches assessed and diagnosed as migraines, I honestly did not know what was coming next. I only knew that the nurse had said that if the pain subsided within the hour and I subsquently got a headache then it was a migraine, not a stroke, and that I could relax - I didn't need to go to the E.R. So, when the pain hit awhile later I was surprised to recognize it. I turned to my husband and said, "I never knew that I'd been having migraines all these years."

For several years I had finally stopped consuming brie cheese, wine, or anything else I had identified as something that would trigger my headaches, but occasionally I would get a craving and convince myself that "this time" giving in and scarfing down a wheel of brie would not cause a problem. Also, there were times when I would get one of these headaches without being able to identify what triggered it. By the time I had that first pre-migraine visual aura, I was having the headaches about 2 or 3 times a year. These were not the only headaches I would have but they were the ones I knew were "that kind" of headache.

Anyway, for about 13 years, the frequency of the visual auras and subsequent headaches increased each year, but very slowly. Then there was a sudden increase in frequency and I was having migraines just about every month during the pre-menstrual phase. I also started having other symptoms and I took all of them to Kaiser. I was diagnosed with migraines (yeah, this was the first time I'd actually taken my pain to a doctor - old habits and beliefs die hard). I was also told I was going through peri-menopause. The diagnosis of migraines was, for me, a mere formality. The second diagnosis, however, I had major problems with from the start and fortunately my persistence and a newbie doctor at Kaiser discovered that I actually had Graves Disease (the hyperthyroid problem that Barbara and George Bush had). That's really another story but I mention it in case others notice any correlations between migraines and thyroid problems.

I was told to take good old aspirin, Tylenol, Ibuprofen, etc. for the migraines. (Since this was the doctor I came to worship when he actually paid attention to blood test results and found the Graves Disease so I have a hard time questioning anything he says about anything else.)

I'll also mention that during this time I was also fighting high blood pressure. I avoided medication like the plague but after a couple of years gave in.

Also during this time the migraines changed. I'm not at all sure if the blood pressure medication caused this effect, but I started seeing the auras more often though without any subsequent pain. And the visual disturbances became more varied. Instead of merely the classical sawtooth-edged arcs of blindness, I started seeing "storm clouds" or "UFO's". The first is a gray to black cloud-shaped blind spot while the second is a pin point of light that shoots across my vision and immediately disappears. I've counted up to three "UFO's" crisscrossing my vision during the same "attack".

When I took my concerns about these visual aura changes to my doctor he prescribed another blood pressure med that he says is often prescribed for migraines - Propranalol. He also ordered a CT scan of my brain, just to be sure, but finally said the light shows were "still migraines."

The frequency of the light shows dropped for awhile on the Propranalol but is back to virtually daily - no matter what I consume, what level of stress I'm under, what I've been doing, etc. etc. Makes me wonder if I should be bothering with the Propranalol.

So, at present, I often wonder if I'm even having migraines. I haven't had pain in a long time yet I continue to have visual disturbances daily. Several times I've had them in my dreams at night and woke to find that half my vision is gone. This latter fact concerns me a little because the doctor will often ask "does it wake you at night" when discussing pain from either a migraine or from any other source, but he doesn't seem concerned that I'm having light shows wake me. But I digress. What I find myself thinking is that if the definition of a migraine is the pain of a specific kind of headache that is sometimes preceded or accompanied by secondary symptoms, like visual auras, then can my auras really be migraines? Unfortunately, when I asked the doctor about this he hemmed and hawed a little more than I'd have liked when he said that though he wasn't sure what "kind" of migraine (classical or ??) I was having, he was convinced that the visual disturbances I am having are migraines. And, of course, he reminded me that the CT scan showed no physical problems.

I've looked online for any information about migraines that consist of just the visual disturbances. Haven't found anything yet but will continue to investigate and if I find anything interesting and informative I'll pass it on.

Thursday, December 25, 2003 at 00:58:19

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