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 migraine sufferers,
I wondered if any one has a history like mine. I too feel alone with this. I must admit some of the stories I just read are really sad and much worse than mine. But here goes:
I started getting migraines around my peroid at age 37. They continued to get worse. They started at 3 days of migraines per month and went to 17 days of migraines in a row. (I remembered having a couple of weeks of migraines after my two children were born. I just thought it was from the exaustion.) I've had them for over 10 years now. When I got on birth control pills it really helped. I still get them (about five days instead of 17) but not nearly as severe. I've been going to several nerologists and I've been on many different meds. I too, have gotten kidney stones from Topomax. Recently my Dr. recommended that I cut my dose of birthcontrol pills (I don't take the placebo pills, I just keep taking the ones that work nonstop)because of the threat of breast canser. I did, and my migraines were 17 days of hell. Really painful even on Imetrex. Most days I had to take 2 Imetrex. I feel like I walk around life being car sick when I am on Imetrex. At least it helps with pain. I went back to my heavy dose of birthcontrol. I also have days during the month that I get migraines from different triggers. Some of my meds seem to help.
If my history sounds like yours let me know.

Tuesday, October 18, 2005 at 16:46:21

nancy <nancyness@aol.com>
Tuesday, October 18, 2005 at 16:51:28

hi my name is donna...hi everyone!

I have had migraines since puberty. They became chronic
after my hysterectomy. That is when my horror began, I am
43 and was 24 when it started. As with most of you I am
an addict because migraine, in my opinion is the least
understood disease, No one could possibly have them be
chronic! I have dangerous reations to most preventantive
meds and of course abortive: DHE, Imitrex and toridol. I have
been 'tested' on average once a year to see if I am an
addict. To their suprise I came off all meds for 2 months
and cold turkey, without withdrawal. Of course I was at
the 5th level of hell with the migraines and they weren't
re-bound because status never changed. I then saw an
addiction/pain control doctor. I was a subject of his experiments for 8 weeks. He put me on Oramorph(can not
remember the common name, stadolns, fioricet. He also
allowed rescue meds for the worst ones. Injections of
Buprinex and Phenergan and allowed this once a week if
needed. He is no longer with Kaise!! I amonce again being
looked at to prove I do not have a problem. About 2 years
ago came off of stadol and oramorph- cold turkey and no
problems. I did this because when I could see my doctor
I was treated like someone dealer off the street.

I need you'alls help-please. the last week and a half I have
been seen at the hospital 4x and urgent care(kaiser) clinic
one time. The headaches are the worst of my lifetime,
felt like I was hit with at bat on mt head, sreamed and
then pass out. for the time frame i fainted 5 times, I get
slurred speech, trouble seeing, numbness, and vomiting. It
has been diagnosed as a comlicated migraine(which I get on
average once a year. Not this year intensity and more symptoms
are there. Has anyone had this problem? What causes it,
does it have a name? I am so scared I am depressed and think
of sleeping forever. By the way I have had 2 cat scans and
an mri for my neck and uper spine. They discovered 2 'bulging
discs' in my neck. To which I was told was not causing the
neck pain and migraines. Can anyone help me?? God bless and
I hope this email finds its readers in great painfree health.
Thank you for allowing me to reach out and vent!


donna <gonzalez0926>
Monday, October 17, 2005 at 01:52:55

My name is Ashley and I am 19. I am a full time student at Western Illinois University and I have had daily chronic migranes for almost 9 months. I have always had headaches but not like this. I get so frustrated with my medications that never seem to work. I am constantly isolating myself from my friends at school. They are always saying, take it easy, get your rest. I just look at them and want to cry. If I take it easy any more I am going to go nuts! I feel like I have completly lots touch with them. So, I try to make up for it by staying up late with them but this has only led me to falling asleep in class on top of constantly having a headache. I dont know what to do anymore. I cant sleep, I cant eat because I think I am going to throw up. Topomax has made my legs numb for the last three weeks, so imagine walking on numb legs! Not too good! I dont know what to tell my friends. I know that they mean well. They really do. I just dont know how to handle the pain anymore. If anyone has any suggestions please email me. I am willing to do anything.

Ashley <Ashleynicole1285@aol.com>
Tuesday, October 11, 2005 at 23:47:08

I didn't know this resource was here until a friend sent me the URL today... wow, thanks, Mike.

I feel like enthusiastically whispering: "Hi, Honey, I'm home!" to all of you. You know why the voice is softer; why the 'brightness' button on the computer is in the position next to black; why the blinds are shut; the music, if on, is faint; and hopefully the dog is subdued for now.

Migraines were passed down, like sweet potatoes at a Thanksgiving table, from women on both sides of my family. Poor dears, they weren't to know and it wasn't their fault. Before my current situation, I'd get them once in a while between the ages of 24 and 29. My doctor at the time tried me on several different meds, but the pain would get to be so debilitating that taking Imitrex, in the intramuscular form, was the only way I could stop them. I learned there's nothing that can prevent a migraine from happening, that some meds can only offer relief.

Coincidentally to the earlier metaphor, on Thanksgiving day, 2003, while skiing, I collided with another skier, fell and hit the compacted snow with the left side of my head. I stood up, brushed off the snow and checked in with the stranger. As neither of us felt injured we went our ways and kept skiing. I even served my first home made turkey dinner for a table full of new friends that evening and all seemed right with the world. Over the next few days my body was sore but I expected that. It was how my neck felt really tight that was irksome. Two weeks later, on Dec. 10, I tried to 'pop' my neck to relieve the pressure. What happened next has changed my life as I'd known it. I got dizzy and fell to my knees; blue and red strobing lights passed through my peripheral vision; I threw up and what's now become a 22-month long, daily, chronic migraine, began.

I was told I'd had a TIA (Trans-ischemic attack) which is a stroke that lasts less than 24 hours. I was put on aspirin and Plavix, a blood thinner. On the MRIs and MRAs some 'flares' on the upper and frontal regions of my brain showed up. There was blood work done, then a spinal tap. FYI: on a 1 to 10 scale of pain, 10 being the worst, the head pain from leakage of spinal fluid from a sketchy spinal tap rates at about a 15. I lived with that for over a week, because a blood patch I was given didn't take! Anyway, I had a transesophagheal echocardiogram (TEE) and it was finally discovered that I was born with a PFO (Patent Foramen Ovale) a hole in my heart. I read that there is a correlation between some who suffer from migraines and have a PFO. So, I thought: after surgery no more migraine!

Meanwhile, I'm in pain every day. At separate times, a neurologist prescribes Oxycodone and Hydrocodone to me, both of which make me care less about everything, but they only mask the symptoms and don't treat the cause of my pain. So, I stopped taking them. Believe me, one of those and a glass of red wine made me feel I could handle the pain of childbirth... but it never lasted, and I knew I was stronger than the hands of addiction.

In March 2004, I had heart surgery via a transcathetar ablation method where the surgeons went to my heart via my femoral artery (in the groin.) Just 2-1/2 years earlier, and I would have had open heart surgery! I'm told that once my cardiologist takes me off the Plavix, most likely the migraine will stop. It doesn't, it hasn't. Yet. No one knows why.

I've been told it's structural damage: that when I hit my head on the snow that I suffered a major head injury, a concussion; that x-rays show I compressed by occiput bone (C-1) through to my C-4. One chiropractor refused to see me, saying that I have neurologic damage, a pinch nerve that could only be made worse by chiropractic care.

I've been to allopathic doctors and homeopathic healers of all types: from my GP to neurologists, a standard osteopath, a naturopathic chiropractor, a Hawaiian bone setter, a Japanese shiatsu thereapist, Chinese acupuncturists; new age shaman-type 'healers; a therapist who held my hands and listened to me vent the stress of living with chronic pain. A bio-kinesiologist/biofeedback/cranio-sacral doctor adjusted my skull through the roof of my mouth. A leading neurology/headache specialist put me on a 12-day steroid treatment (!!) and water pills thinking maybe I had Hydrocephalus - excess spinal fluid in my brain, which it turns out I don't. I tried Imitrex again and it doesnt' touch my pain... how's that? I wish I knew. Argggghhh. I am so tired of being a guinea pig in doctor's offices; always 'in someone's prayers' and still not knowing what's going on!

I've tried to be gentle with myself; to be a 'normal' person doing 'normal' things, but what I've been through isn't normal. Sunglasses and earplugs help make it bareable to leave the house. I've created dim, but candlelit spaces in my home to meditate the pain away: I vowed to be a pleasant person for my boyfriend to come home to and he still left me, fed up with being with someone in chronic pain. I am helpful to my family and friends as much as I am able; and I have worked inconsistently for the same reason: I do what I am ABLE to do in any given moment. No less.

Sometimes I feel like people don't believe me. What's worse is when those I feel closest to no longer know how to be with me because there doesn't seem to be any way they can fix the 'problem' like you could by replacing a bulb or fixing an air leak at the intake manifold.

I want to dance, play, ski, bike, to be joyful and look towards the future with all the enthusiasm I once had! I used to be the example of cheer. So I live with hope. And if I can do it, so can you. Thanks for listening.

Nicole <butterflywoman@comcast.net>
Tuesday, October 11, 2005 at 15:39:03

Hi my name is Donna

History to follow when I get rid of ..... you know
what. I, in my mind know, but heart not so much.
I am desperate to write to people who are in the
same boat...I am an 'addict'. I am so tired of hearing
this that I sometimes want to go sleep and not wake up.
I would never do anything rash, but the medical
field needs to wake up, we are not faking,, drug seeking,
attention wanting, mental, depressed, hormonal, etc.
You know what I mean? I just want to know I am not
ALONE, because I feel like I am.

Thank you for your consideration.

donna gonzalez <dgonzalez16@cox.net>
Saturday, October 8, 2005 at 00:39:51

Thank you so much for giving me the opportunity to express myself, I am new to the horrific world of migraines. My venting is much needed seeing as it just so happens no one else around me understands. I am a 30 yr. old (previously athletic) female. Played every sport under the sun and have been working out regularly since I was 15. But I'm different now. I was in a car accident a year and a half ago. I was rear ended in stopped traffic but the damage to my car was very minor which in itself is weird considering the condition I'm in now.

My world has changed completely. It started with a constant dull headache right after the accident that ended up lasting for about 3 months. I had jaw and ear pain come and go. My teeth started doing weird things. I had never had a migraine before and my TRUE typical migraine attacked me a month after the accident. The way I describe them to people around me is I have them imagine a huge body builder with his hands on each side of my head squeezing as hrad as he can. I now have bad jaw problems and teeth issues. I've been in treatment since including MRI's, CT scans, etc. They have found nothing. I've had to try just about every medication under the sun.

Despite my frequent migraines, I still do everything I possibly can do keep a productive life or I really WILL go nuts. I tried to work but got let go as a result of too many doctors appts. Worked for a temp agency and never got the permanant position I was promised at each job a went too. After a year of on and off unemployment, my neurologist seemed to have found a blood pressure medication that alleviated the cluster migraines I was getting daily and my REALLY bad migraines seemed to decrease.

With this new freedom, I felt like a new woman. To celebrate my new confidence, I applied to the local law enforcement academy and was accepted. I informed the director and most instrustors of my condition to cover my bases. The migraines came back and I worked through them as much as I could without it being apparent for fear of veering from the militaristic expectations. I took many tests with migraines,physical and academic.

I eventually had to miss a morning of class (a BIG no-no) and finally went to class when I was able to stop throwing up enough and my vision wasn't blurred in order to drive there. Because of the meds I informed my instrustor I was on, he did not enable me to participate in class which at the time was defensive driving. Rumors were started that day including the worst one: I had come to school hung over and also the one that an instructor had smelled alchohol on my breath. Because of this, I was EXTREMELY ostricized from the class including study sessions and other activities outside of class. Everything snowballed. I took all exams when I had a migraine whereas not to receive special treatment even though I had the option to postpone it. I was dismissed 2 weeks later on good standing for failure to meet criteria for 2 practical exams. My grades had been great in the beginning but as the migraines set in, they got lower and lower each time.

All I do now is apply for jobs and help friends with odds and ends. I sleep a lot. I drink more. My friends are tired of me not being dependable. I miss traveling. My body's schedule is out of whack. My teeth are getting ruined even though I where a splint. At this point I pretty much hate my doctors for not being able to fix me and not being empathetic. I don't trust them either because I feel like since I have an attorney that they are resentful and hold back. I also don't trust my attorney because I've heard they can be incahoots with the insurance companies and he gives me no hope. I feel like I'm losing my mind, literally. If I didn't know any better, I would think my brain, teeth and are working together to make my life as absolutely miserable as possible....and it's working.

I am very thankful for having come across this site and I do feel less crazy:) Any advice anyone can provide would be MUCH appreciated, especially legal advice. Thank you for listening, BHH

Betsy <dolphin_chaysr@yahoo.com>
Friday, October 7, 2005 at 20:25:03

Anyone else have migraines that start to go away and then come back with a vengeance? My partner seems to think I'm faking, which makes me want to crawl in a hole. Any advice?

donna <djkraus@aol.com>
Tuesday, October 4, 2005 at 14:18:24

It has been months since I last posted, the frequency of my migraines has again increased to it's "normal" level of 2-5 times a week. All the pain meds my new pain doc prescribed have not worked. I still take the Indomethicine my internist prescribes and it provides about a 40% chance of preempting a migraine if I take them at the very first sign of an oncoming attack; after the migraine gets started, nothing I have yet taken will stop teh pain and I must wait it out. Fortunately, I do not believe the pain level of many of my migraines to be as high as many of the poster's I read here but they are enough to interfere with my life and work. Of course, I get a few real doozers a year. My new pain doc, whom I last saw last fall, wanted me to have an angiogram to check for plaque in my arteries and if clear put me on Immotrex-well, my med ins changed and I can't yet afford the $500 deductible and will have to wait on this. Anyway, I have always been afraid of Immotrex and would prefer stronger pain meds which no doc I have yet seen will give me. Are all docs afraid they will turn you into an addict?

In response to an earlier post on exercise induced migraines, I get migraines from exercise. I run (4.5 miles) and many days a migraine comes on an hour or two after. For the last couple months I have only been running a couple times a week, if that. The dilemma: I need to run to lower stress which can cause migraines but when I run, many times I get a migraine!

dennis mccowan <dennismccowan@yahoo.com>
Thursday, September 29, 2005 at 12:57:53

Hello,thanks for hearing my story.In 2000 I was diagnosed with cervical degenerative disease & osteoarthritis throughout most of my body.2002 diagnosed with chemical sensitivities(environmental illness).2004 diagnosed with fibromyalgia.Well because of all this and of course genetics,I suffer from 10 to 12 migraines monthly with average migraine attack lasting 2 days.I have seen several neurologists and aside from there personal opinions they really have no solution.I take beta blockers daily,2 maxalt daily,narcotics,nsaid,gravol and various homeopathics.In March I was fired from my job after a 20 year career as a Compounding Technician that made medication and worked with chemicals daily.There is no support for people like us because it is not a visible disability.What I find upsetting is the lack of compassion and understanding from empoyers,medical and governments.I am so sick of people saying chronic pain of any type is all in your head.I know myself I've tried everything except moving into a barometric stable,hormone & chemical free bubble.I am 40 years old & thank god that I am strong because I have many years left of this.My heart goes out to all you survivors & someday maybe there will be a breakthrough.
Thank you
Tina B

Tina B <tlbsam@hotmail,com>
Thursday, September 22, 2005 at 12:32:29

need help! what it the latest remedy for migraines?
thanks, Tamara

Tamara Vargas <tami_v3@hotmail.com>
Tuesday, September 20, 2005 at 16:11:34

Hello. I have just found this site. I am 19 years old, going to school full time. And ontop of everything I have had migraines since I was probably five or so. My mom also gets them too,along with the rest of her family. But her brother had an aynersum ( an abnormal blood vessel) in his brain. The drs figured this out when finally after having serve migraines, pain behine my left & right eyes depending on the day,dizzy spells, nausea, passing out, and work sending him to the hospital and not letting him back till he had a drs note. He was early 40's at the time. He ended up having surgery and ahs received 3 extra years of living and being with his kids, but he still has migraines. With myself I worry about that because recently my migrains are almost everynite, I get nausea, dizzy, feel faint, and more than ever I cannot consentrate on school. Looking at the computer even hurts. I feel weak too. My mom always says its just genetics, but recently they have been progressing worse each time and day. I am on imitrex but I have to take 2 to 4 at times. I have thought about seeing a neurologist, but i think that they just will say it is genetics, because everyone has them. But after reading some of these entries I think i will be making an appointment tomorrow, I just dont know what else to do.
Thank You for letting me Vent

Elisa Marie S. <Bratte18@aol.com>
Thursday, September 15, 2005 at 21:48:18

hi there.For the last 4years ive bin suffering with bad stabbing pains on the left hand side of my head and behimd my left eye.I was eating about 12 24 neurophine aday but it was always the same thing it wood always cum back.If i didnt take tablets with in minutes my ead wood b banging. Its bin 4years now nearly 5 and ive bin told by the docs in London that i have sumthing called suna or sunct.This mornin im sittin ear after avery bad night and ave managed 2hours sleep cause the head just woodnt go away no matter wot i try.I hope sum1 knows wot im goin through as i aint had any1 that can talk 2that understands.Anyway thanx 4 letting me go on and i hope 2 read sumthing from sum1 later thanx

simon adams <maddriver_30@hotmail.com>
Tuesday, August 30, 2005 at 02:45:32

thank you alyssa and cindy, i am having a rough time and i called my doctor this am and waiting to see how she would like to proceed. perhaps she'll change the medication all together or increase my dose yet again. i have been doing some research on preventative meds and i have tried them ALL. she has me taking the mscontin to prevent them (so to speak). i dont wont to give up - at least not right now LOL!. thanx again ladies and have a pain free day!
hugs and love to you,

christine <richri7@yahoo.com>
Monday, August 29, 2005 at 14:01:16

hi i found this web sight last weekend,and was going to post a message, but the message from christine peddigree just hit to close to home, i thought i was the only person that gets migraines who has considered suicide.
i have suffered what i call "CRUSHERS" for 13 years now, and every year they get worse. i have been treated by 2 primary care doctor's, whose attitude was "your a woman,you can't handle pain. HELLO TRY HAVE 2 KIDS ONE 10LBS AND ONE 9LBS." CAN'T HANDLE PAIN!!! i've also seen 3 neouigists, 1 of them wanted me to use medical marijuana when i refused he responded by telling me he would no longer treat me. i now see a neurosurgen, during 13 years and all these doctors i have taken every triptan pill, nose spray, and injection there is.
these may work the first time, maybe even the second, but never the 3 time, they just become inifective. the same goes why the "preventive" med's like amitriptaline,depacote, neurtin, oh yes, must not forget topamax--that one almost killed me. same goes with pain relief, my primary care doc couldn't understand why 60 vicoden 7.5/500 did not cure my "CRUSHER". he said i was becoming an addict, and would precribe more than 60 per month. no refills either. i now see a neurosurgon, his response was ofcourse you're an addict, anyone with that much chronic pain is going to be a addict, at lest it's prescription drugs we control and not street drugs.
right now he has me on 16mg of dilaudid every 4hrs, i have to get up at midnite, and at 4 am,to keep on schedule. however, i still have daily pain and the worst comes when the barametric
pressure changes, even if it's only a tiny amount it's CRUSHER
time. i lost my job of 17 years,my house looks like--well you know. ifor 17 yrs i managed a million dollar business, now i can hardly balance our check book. i use to be able to write up complicated policy manuals, now i am having a hard time writing this. YES, I HAVE MY "STASH" of med's. i have even discussed this with my wonderful husband, but a person can only go one with this kind of never ending pain for so long.
when i saw my doctor last week he gave me a new medicine CYMBALTA, i only take it once a day, it's a new preventive i guess, along with my dilaudid. i sure hope it helps.
lorrie phillips E-mail lorriephillips@hotmail.com

lorrie phillips <lorriephillips@hotmail.com>
Sunday, August 28, 2005 at 18:16:02

Hello my name is Kelly. I have suffered migrane headaches since I was three years old according to my mom and now I am 37 years old. I have three forums of headaches and having been through the mill as they say for treatment options already from blood pressure meds to heart meds to depression meds to you name it. I have been to neurologist and no one has come up with a solution until I met my family doctor. No one understands the pain more than he does and I feel lucky for that as pain meds are getting harder by the day to get due to people abusing them all the time. I have Migraines to know return, Tension Headaches to know return, and Neuro Occipital Aplegia ( Definiton for this is that the two nerves from the eyes the greater and lower occiptal nerves to behind the ear down the neck and into the trapezous muscle which is the largest muscle of the body.) Some how it is pinched and if any ladies or men have been with anyone having a baby or had a baby without pain meds that is how bad my headaches are and I don't have a day without them. I have been put in a wheel chair for three years due to the pain affecting my walking and I drop to the ground without warning like someone who has seizures or a stroke. I have been to hospitals on the west coast, east coast, south, and the north. The only thing they can tell me is when I was born my neurological system is backwards from everyone else's. That means the left side controls the left side and the right side controls the right side. Alot of times my left side is numb and paraylized. My family Doctor that I see now has helped me to walk again with some set backs at times. I have what they call trigger point injections on my right and left side occiptal nerve's with Lanicane and mardicane and then demoral and phenogran shots also. I have to do this twice a week and I can walk, talk, drive or whatever as it doesn't make me loopy. My doctor is one of the very few that do these trigger point injections and he has had people in the hospital for days and they have a headache so they run all these tests. One day he tried this on a women who was hospitalized for a month and in 20 minutes she called him and asked him to sign her out of the hospital as the pain was gone. I have to say my brian is numb literally due to these shots and I have accidently banged my head trying to lay down and it just was a numb tingling feeling. I pray this might help someone else out someday. Fallen On Deaf Ears Ministry heavensentangel

heavensentangel <kelly4children@yahoo.com>
Saturday, August 27, 2005 at 21:55:25

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