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!





hi all. haven't been here in a while. life has been very busy. starting to get auras, which means......... grrrrrrrrr. so far, though i have been on zomig, which seems to work. crossing my fingers though, as to how long it lasts. wish me luck. hope all of y'all are doing well.

tracey <tranurse@yahoo.com>
Wednesday, March 5, 2003 at 09:09:19



HI.

My name is Jodi, 2.5 months shy of 29. I have been a migraine sufferer for 20 years, although I wasn't diagnosed until the age of 12, when my 7th grade teacher called 911 as they thought I was having a stroke. Prior to that, I recall having bad headaches as a little girl, as I remember a time, when my oldest brother was baby-sitting me and crushed 2 aspirin up in a spoon with water, as I couldn't swallow pills at that time.

From that time (the diagnosis of migraine) and into high-school, I suffered from migraines maybe 12-14 times a year. They were extreme and intense. I would thow-up immediately at the onset of the aura (which I get for every migraine I have) and would continue throwing-up until there was nothing left in me. Often times my body would go numb on one side, my fingers would curl and I couldn't talk as my tongue would draw to the side. The sound of someone speaking, or any sort of bright light would render me a zombie with my hands over my head, circling to get away. I often times, would sit in my living room, banging back against the couch, begging for someone to help me or wishing I was dead. The excruciating pain in my head was so bad, there aren't words that could even possibly begin to describe it. I would end up in the ER where I was giving many different meds, from Demerol & phenegrin to toradol and ativan (please excuse my spelling). I even recall 2 times, once my neurologist saw me in his office with a migraine and injected me with valium and the other in the ER, they actually gave me morphine. All meds usually IV or often times IM.

During this period in my life (the teen years), while my migraines were intense as described, they weren't as frequent as they are now, (I will explain). I took a daily preventive, I believe it was Inderol, and for the actual migraine, there was a wide variety of drugs my neurologist tried - cafergot, hydrocodiene, Tylenol 3, many more that I just don't remember off hand. These were always changing, as the preventive worked, but we were trying to find something for pain management that would keep me out of the ER.

In college, my migraines were about the same as in high-school, but over the period of 4 years, they became more frequent. I then would suffer 2, 3 or more a month. But still with the same symptoms as a teen, throwing-up, numbness, etc.
It was at this time, my neurologist put me on nortriptyline (50mg) a day as a preventative. And for the actual migraine, I tried various drugs, Stadol NS (god awful stuff), hydrocodiene, phenegrin suppositories - among others. Usually I ended up in the ER. And there, after a period of time, doctors, nurses would question me as a patient - they thought I was a druggy! I could tell! What an awful feeling!?! Here I was suffering this god awful pain I've been cursed with, and an actual doctor, with a degree, was doubting me! So then for every ER visit, instead of treating the pain, I would lay there for hours and they would inject me with all sorts of stuff, till finally they would treat the pain.

With that in mind, I recently was just in the ER, once on Monday and then again on Friday. On Monday, the doctor requested blood work and injected me with Benadryl and torodal, this didn't work! (Hello - Benadryl - what the hell was this for?? - he says it will relax you! - Maybe if I had an allergy to grass - this doctor thought I might be a druggy - so I had to suffer! - sorry, needed to vent) - So then on Friday, same ER, different doc questions me about my treatment on Monday - He says - "the way I see it, we can play around with your headache or we can get rid of it, and I'm in the business of making people feel better" - Why can't all ER doctors be this way - especially when all they need to do is contact my doctor for verification?

So back to college - my grades suffered, my social life suffered, but most of all, I suffered. Some professors were understanding, others were not. Some friends were understanding, and again others were not. I lived in sorority house after my sophomore year and my best friend and roommate ,would put a note on our door, "not to disturb, Jodi has a migraine". It then became a big joke among some, who thought I just had a headache!
To sum it up - I almost flunked out of college! I tried to withdrawal from a semester but it was past the deadline. I appealed to each professor and each declined. I then appealed to the dean of student affairs to recall a semester of grades from my record. I had 2 doctor letters explaining my illness and at first request, he denied my appeal. I then insisted he meet with me. I told him a have a very serious condition, which often leaves me incapacitated and I didn't think my disability should keep me from a college degree. I believe he did speak with my neurologist and finally my appeal was approved. I still went to college for 7 years though- but I have my degree and no-one can take it from me!

The Change.
Sometime between the end of my 6th year of college, age 24, my migraines changed. I started to have them 2 and 3 times a week, but they were different. I stopped throwing-up with the aura and while the pain was just as intense, I could tolerate it more. Once in awhile I would still have a migraine as the one's in high-school, but for most they weren't as bad. During this period, I went to see a neurologist at UVA (U of Virginia) - he prescribed imitrex in combination with butalbital for the actual migraine. At first it didn't help, but oddly it just started working! My nortriptyline was increased to 100 mg and I was in control - the headaches, while frequent 2-3 a month, didn't leave me helpless, I actually could carry on a conversation with someone once the aura went away.

After graduating from college I lost 2 jobs for missing time from work. I currently have a great job (2 years now), but I have had 34 migraines since October. My boss has ocular migraines, so understands what I'm going through. I currently take 100 mg of Nortriptyline, and 120mg of Inderol a day - Imitrex injection and butalbital for the migraine. - Sometimes it works, sometimes not. During this period I have been to the ER for about 10 migraines - and treated the same as in college - some docs are nice some aren't. My life, while good - SUCKS! - I'm extremely depressed because of this. Since I started using the nortriptyline back in 97 I've gained 80 lbs. - whether or not the nortriptyline helped with the weight gain - I don't know. What I do know is that I want to loose weight, but can't get to the gym because I have a migraine every week - and who wants to work out when they can barely bind over without it hurting their head. I'm going to see a specialist at the end of March - again at UVA - I'm just praying he can help.

If you've read this and have any advice for me - PLEASE, at this point, I'll try just about anything!

Thanks for listening.

Jodi























Jodi <jodiv@earthlink.net>
Tuesday, March 4, 2003 at 12:48:37



God - there are so many people out there suffering from this awful, awful condition - I started getting migraines when my Dad died suddenly back in 1997 - And since then it has really taken over my life - it seems to have different stages over the years - I've had countless tests done, tried so many medications & tried 'cures' but nothing ever changes. I don't know about you but it's like a dark cloud hanging over me & it makes me feel so depressed & helpless. I pray that one day, very soon, a cure will be found to treat this 'thing'. So hang in there all you poor people & live life to the max when you don't have a migraine. I'm 26 by the way. Take care.

Lisa Mc <dooballa77@hotmail.com>
Tuesday, March 4, 2003 at 12:33:22



Hi,

I just spent the last hour reading these journal entries. I get a migraine about once or twice a year. Two or three aspirin and an hours sleep usually works so I don't have a problem. However the pain is unbelievable and it sounds like it is nowhere near what most of you are going through on a daily basis. This completely blows my mind. My girlfriend suffers from migraines daily and has gone to all kinds of doctors and taken all kinds of drugs. Yet she rarely complains and puts up with all my crap on top of it. You people are a testament to the human race. Your strength is both inspiring and humbling. Hang in there and god bless you.

Begining to understand,

Greg

Greg Despins <g.despins@shaw.ca>
Friday, February 28, 2003 at 12:30:23



I have been a migraine sufferer for about 11 years now. My grandmother had migraines until menopause and so it is believed to be hereditary. I suffer from the "classic" Migraine. When I first started to get them my auras included numbness of my hands/feet, vision problems and I would often have trouble speaking. As a teenager around 16 this was very frustrating and I found that many people in my life had a very hard time understanding how debilitating Migraines are. At the age of 17 something truamatic happened in my life and I was experiences 4 or 5 Migraines a week due to stress and clearly needed to do something. My family doctor put me on a Beta Blocker...Inderol. It appears to work well in the sense that I nolonger get the auras when I get a migraine, I just get the pain. I am very frustrated right now because I never seem to be able to get any form of relief. I have had a headache for about 4 months straight and that is not an exageration! I have tried all of the usual Migraine medications, Imitrex, Ergomar, Naproxen, Maxalt and the list goes on. Nothing seems to help. I have recently been reffered to a Neurologist. I have seen one in the past but am hoping that this one can offer me some explaination for the frequency and severity of my migraines. I live in Calgary Alberta Cananda and am told that the drastic weather changes can play a part. Anyway wish me luck and if you have any suggestions or advise please send them on.

Thanks,
Megan

Megan <meganhurl@hotmail.com>
Thursday, February 27, 2003 at 17:28:38



I have been suffering from migraines since the age of 10. They were more severe when I was younger, but in the last 6 months, they have gotten progressively worse. (I'm 30 years old now). When I was 22, I had a large stroke and it was discovered that I have a blood condition called Factor V Leiden. I also have some abnormalities in my heart, so these conditions exclude me from using most of the so-called "migraine drugs", such as Imitrex. I have tried Elavil, taking 100mg per day, but this is no longer effective. I work in a call centre and the fluorescent lights really bother me. I have seen a neurologist here in my small city, but he was a QUACK!!! I seem to be at the end of my rope. I don't remember a day when I didn't have a headache. My husband tries to understand, but he has never been sick hardly a day in his life, so it's really pointless to try to explain this kind of debilitating pain. if anyone has any suggestions, please post them on this site. Thanks for letting me vent my feelings.

Kimberly Haines
Wednesday, February 26, 2003 at 07:35:28



hi..its funny i was looking a drug for someone and found this page..i to am a migraine sufferer..i have been getting them since jr.high..im now 47 ,,female..i do not take any medication..as
i am afraid of medication..but i do take off the counter things..which until now not much helped..i can almost always tell when they r coming..sometimes i get floaters..r the day before i find myself in a very bad mood..sometimes not even liking myself..i often carry a headache for 3-4 days ..then the big one comes..i get nausea.shakes.light bothers me alot.i want nothing to do with anything thing that smells...i take a warm bath..wet my hair.and i use a mentholatum on my forehead w/ a cold towel .. heating pad on the neck...sometimes i do miss work..NO ONE understands.. they just think "oo a headache" if they only knew...well im glad i found this page...i know im not alone but to read about others does help..this also runs in my family and now i have a grdchild about 6 who complains about them and i have heard them tell her "oh you are to young for headaches" i have told them to please listen to her...she calls me when she does have them you can tell she is not playing..well everyone thanks for being here..

anne <sunsets8855webtv.net>
Tuesday, February 25, 2003 at 20:37:05



THE STALKER

Ever Near
Pain stalks me like a vengeful foe

Its threat hang over me
all my days
all activities

C.M. Peterson <merlyn1@msn.com>
Saturday, February 22, 2003 at 03:54:41



It all started 8 months ago day after day and i cant seem to get them to stop. I have visited a neuroligist which had me go and have a mri done and an eeg. The mri showed nothing
but the eeg showed a mild siezure activity which is causing the migraines. Just recently about 2 weeks ago I have been discharge out of the hospital where they done blood work, spinal tap, and tried various medicines which none of them i can remember. But if any body has any suggestions please email me at hillbillyshoos1@yahoo.com cause i am so tired of the every day pain. Mostly 4 out 7 days they are rated at a 10 which sometimes i'd like to call a 20, every thing the doctor has tried so far has not worked. Thank you for reading this and I appreciate any feedback you may have.

JEREMY COBBLE <HILLBILLYSHOOS1@YAHOO.COM>
Tuesday, February 18, 2003 at 20:41:20



I have been suffering from migraines for almost twenty years, though in the beginning they were "normal" migraines and occured infrequently, they were none the less somewhat debilitating about three times a year.

As time passed they became both more frequent and more severe, and i was treated all through the years with countless Dr.'s in different specialities who often had a "here try this" approach.

Because i was a navy wife, unfortunately the Dr.s were scattered hither and yan all over the country, so I believe I did receive a faily wide range of treatment and countless tests, all coming back "normal" unfortunately, the condition gradually continued to become both more frequent and also more debilitating as time passed.

Until 2 years ago I was able to maintain a semi normal life, dispite high stress situations like divorce, and single parenthood with two severe ADHD girls i remained productive and indistructable even with the migraines getting worse,taking on different charecteristics, and as Dr's tried everything known to man to reduce the frequentcy, like depakote, elavil amatritaline topamax midrin, and a slew of others, in the last 20 years, including those used to abort, maxalt, imatrex, dhe, unfortunately the ergot based medications and the triptans caused alarming heart issues they actually stop my heart. we learned this the hard way] when administered so I can not use them, nothing has been effective, totaling what is now 77 different medications, and countless other options like quitting smoking, stopping caffine, and even for a period of two months last year stopping all medications completely to make sure i was not stuck in a rebound cycle, and many times the side effects of the medications were hurrendous.

23 months ago the migraines/ clusters very suddenly became much worse i began having symptoms like my eyes rolling in the back of my head, very very severe pain, confusion, loss of balance and depth perception,sort term memory loss, loud ringing in ears, inability to concintrate, and process information,not being able to effectivly communicate verbally because i couldn't find the right words to put together, it seemed like while i could hear what people were saying they were speaking in a different language because it made no sense, the list goes on.

They became more or less daily and i was forced to go off work on short term disability because of it. while we were unable to find anything that clearly triggered them at that time, we did find some amount of corelation with weather changes, i then requested a referral to the mayo clinic, where i was told we'd pretty much run the gamut of medication options for preventative and abortive measures, i was councled on the dangers of rebound headaches and their pain program was reccomended, due to insurance issues,and the fact that it is an outpatient program which would have required my staying in a hotel for 6 weeks, the program was a financial, and parental impossibility for me, and the dr there advised my treating M.D. to continue with oxycontin and percacet to treat the condition.

The weather settled and i was able to return to work after four months using the medication to continue at a functional leval, and taking time off day to day.

In march of last year, AGAIN they took yet another turn for the worse, in the past 11 months i have lost almost one hundred pounds because of the constant throwing up and nausea, we tried another slew of medications in an attempt to stop the horrible pain, now presumed to be a conbination of clusters and migraines which leave me in a state of not knowing if i am coming or going much of the time, because the clusters make me want to bang my head against walls and pace the floors, and the migraines make me want to lie down in the dark, it's as if my brain is completely short circuting. i can not remember things literally from one second to the next, where two years ago i was on the ball and on top of EVERYTHING, now i am unable to most days put together the words that are in my head in a way that clearly makes sense and gets my point accross verbally without forgetting what the topic at hand is, i am forced to type or write when i need to answer questions or really communicate, which enables me to stop and reread and think and gather my thoughts.

i can not tolerate light period, i have to wear dark wrap around sunglasses even at midnight when i go grocery shopping for my children because i can not tolerate the lights in the stores, or the headlights of other cars, when i do go out in the day, often times after just a short period with the glasses on i am violently throwing up from the pain the sun causes, my house has to be kept as dark as possible most of the time, and i feel kind of like a vampire. needless to say i have become depressed, i am now getting long term disability from my employer but it was one heck of a fight, and i am in the "reconcideration portion of the process for ssi, today my ltd carrier called and left a message that they are sending me for an independant medical exam, which means the fight is beginning yet again.

i hardly have enough energy to get my children up for school in the mornings, i have to literally force myself to leave the house because i am prone to becoming violently ill with no warning at all, and the loud retching and heaving is so incredibly embarrassing i would rather crawl into a hole and dissappear then to see people staring at me when wave after wave hits me and i can not stop it some times for hours, often i become so completely warn out within minutes from the combination of it and the pain my legs and arms shake and i am unable to remain standing without help, the last specialist i saw was a complete and total nightmare, he ordered my fiance' from the room and said the exam would not continue if i insisted on keeping my husband to be there, because "failure to cooperate" could be cause for stopping my disability benefits, i was forced to endure the most emotionally abusive situation imaginable, i was talked down to, not allowed to speak, yelled at when i attempted to correct this dr's inaccurate statements, and though for what ever reason the exam took place in a heart cathiderization recovery room, i was forced to remove my dark glasses and told i was not allowed to wear them anymore because "they did nothing to help", my photophobia was not real, and the light indeed didn't make the pain worse, and believe it or not the abuse got worse from there, he insisted i needed to change medications now to methadone because "within two years" i'd be having to take it anyway so i might as well just do it now" i am scared to death to even concider methadone as a treatment for the pain, and i have opted to suffer most of the time out of fears of dependency and side effects,and uncaring professionals with God complexes.

in a most recent MRI it showed a "MARKED SIGNAL DROP OFF" in the left caroted artery at the base of my skull" no other mri in the past showed this, and seems to be the only "change" that might explain the change in my condition. I have chronic extremely severe pain almost constantly, partial "drooping" of one eye aura, dizziness, the weight loss, and all of the other things listed here along with other symptoms which are making my life a living hell, so much so that there have been times iv wondered if dieing wouldn't be the better option. All of this being said,pain and symptom control are all that is left for now, and as sick as i am, i keep being expected to fight insurance companies and even the government for ssi, at the rate i am going, i will be dead before they stop harrassing me every step of the way..

i have been seeing a psychologist to help me, but especially since the pain management dr nightmare i go into full panic mode at even the thought of seeing yet another new dr, and i am well aware that this independent medical exam doctor will in all probability be worse then the other one.

I apologise for being so long winded but i am truley at my wits end with all of this, and i really need some input as to if there is anyone out there who can give me any idea when it will stop so i can live my life such as it is, in peace, and put what little energy i have into finding some sort of quality of life dispite being so ill.

obviously some of you have won the battle, please please please tell me how, and how long you had to go through things like this and if there is anywhere i can turn for help.

in closing, i wish all of you the best of luck with your battles, may God and the Angels stand beside us all, and comfort us in our painfilled days and nights.

jen

jen [hurtinghalo] <jenhey101@aol.com>
Sunday, February 16, 2003 at 23:21:19



In June ofI was dx with migraines at a very very young age, I was 5 years old when I had my first migraine. In 1967 they did not dx correctly, they told my my that I was exagerating the headache. I have common migraines and I get 1 to 2 a week. They lay me flat out in bed for most of the day, my usual time is 20 hours. I take Imitrex, and yes it works but Zomig works so much better for me. Unforturnately, my insurance RX plan will not cover Zomig. Is is common to get this many migraines a week ? It has always been this way. I've missed so many school dances, weddings and even my prom due to a migraine. I've done all kinds of tests, CT Scans, MRI's, Biofeedback, etc and I am at my wits end. I'd like to have my neurologist prescribe me Stadol but he refuses, he states that it is way too addictive but yet he gives me morphine! The morphine does absolutely nothing for the migraine. I have terrible nausea with my migraines. I keep a bowl next to the bed so I do not have to keep running to the lavatory, I do have Compazine suppositories but I usually wake up with the migraine which is the worst feeling in the world because it has already taken a nasty hold and I am unable to get rid of it. I also take Butalbital w/Codeine and a med called Elavil which is supposed to be a preventative so I don't get them as much, but they keep coming! Every week like clockwork. I keep a migraine diary. They are absolutely vicious. How can I go about addressing asking my doctor to please prescribe me Stadol? And any other suggestion you would have for me I would so appreciate! I take the supplement of magnesiam but I don't really notice a difference. They are ruining my life. Help! Please ? Michele

MICHELE <SONYABLU67@AOL.COM>
Tuesday, February 18, 2003 at 13:25:23



2002 I woke up one am with a headache, worse than I ever dreamed possible. I went to my family doctor, who gave me an injection of Stadol and Phernagen. The next day was the only day or night that I didn't have a headache for 3 months. After more visits to my doctor, a cat scan and an MRI (both negative), I saw a neurologist. After 3 minutes with me, he told me I had a migraine. I have tried 3 different medications and they did not help and I had bad side effects. As quickly as it began, it stopped. A month ago, I felt very nervous and anxious and became so dizzy that I thought I would pass out, so bad that my husband took me to the local ER. My blood pressure had shot up and after the dizziness subsided a bit, the headache was back. Since then I have had one more extremely bad episode such as this and slight dizziness very often, accompanied by the same awful headache, sometimes ringing in my ear and an occasional sharp pain in my ear. Right now, I am into my 3rd day of this (also slight nausea). I have talked to one or two migraine sufferers and sometimes I'm not sure that my problem is migraine headaches. Do any migraine sufferers reading this have any symptoms such as these? I really need to know - I am really beginning to worry about this and the doctors seem to think I'm paranoid and if I go to ER or the the office with these complaints, they tag it as "stress". Yes, I am stressed out....because I can't find out what is wrong or get any help from them. Any response would be appreciated.

Brenda <bmwoolard@hotmail.com>
Friday, February 14, 2003 at 17:44:33



Help! I have suffered from chronic migraines for 16 years (since the age of 5) with an increase in pain and frequency over the past two years. I have a son that I feel like I'm letting down due to frequent headaches that leave me useless. I find myself missing work more and more and the people at the pharmacy now know me not only by name, but even by the car I drive. When I leave the house I have to carry a case of meds. Right now I am on 4 preventative meds and 3 medications for treatment, and I still end up in the emergency room once a month. My neurologist is an outstanding doctor, but he is running out of ideas. He has tried almost every medication known to treat and prevent migraines with little success. I recently tried trigger-point injections with great relief for only two weeks. I can't afford to continue the injections for the rest of my life. My doctor tells me the next step is to admit me to the hospital. I cannot afford that either, financially, emotionally, and when it comes to work, my child, and my family. I am tired of the pain, and my fiance and other family are tired of having to care for me and pick up the slack. Does anyone have any suggestions? I am desperate! Seriously, HELP! Please e-mail me!

Sara S. <sarae_426@yahoo.com>
Thursday, February 13, 2003 at 10:57:23



Hey everyone! It has been quite awhile since I wrote, but I wanted to ask if anyone has tried the Botox for migaine? I have had a migraine every day for over 4 years now, and nothing has worked at all. We have even tried brain surgery and that did not help at all, it was just a month of torture in the hospital thanks to bad doctors....So, I have decided to try the Botox injections and have to say I am curious as to if it will work. I figure I have let them do everything else to me...lol.....Anyway, i would love it if someone could kind of let me know what to expect during and after!! Everyone stay as pain free as you can and my mailbox is always open!!!

Bonnie <TheBelle1@aol.com>
Wednesday, February 12, 2003 at 08:52:20



I have just discovered this website and want to share my migraine salvation with all of you sufferers. I have been getting migraines since my early twenties and I am now sixty-three years old. At the first sign of an impending migraine, I take three ibuprofin tablets. Most of the time that nips it in the bud. If not, I use a small piece of a Cafergot suppository. The directions say that you may use up to five whole suppositories per headache! Sometimes I have to use up to one whole suppository before finally getting rid of it. Cafergot also comes in oral medication, but it made me sick to my stomach, so I opt for the suppository. I lay down with a cold pack and I have really gotten them under control. Sometimes, I have to deal with them for three days, but the combination takes them away, eventually. I might get rid of it, but later that night it comes back, so I redo the regimen and it goes away. After three days of this, it goes away completely. In between, however, I am pain-free although I know I am still in the migraine mode by the way I feel. It's like a syndrome that affects my whole body. Sometimes I do get aura that lasts for about twenty minutes with a slight headache. Before I discovered Ibuprofin and Cafergot (a prescription medication), my migraines were severe with vomiting and lasted three days! I really do feel liberated and although I dread a headache, I know that I can get relief and in most cases, abort the migraine altogether! I do hope this helps someone out there.

Leila G. Crist <Leila.Crist@Verizon.net>
Monday, February 10, 2003 at 11:34:18


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