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, my name is Shawna. I'm 27. Almost 28. November 28th. I've been married almost 4 years. (this month) I have 2 children. Halee will be 3 in December and Nathan will be 2 in March. I have had Migraines since I was 14.

Shawna <ShawnaLynn7@hotmail.com>
Wednesday, November 6, 2002 at 19:00:44



I have had migraines since my teen years and I 'm now 47. The most effective treatment for me has been Imitrex but it has awful side effects which last about an hour. I have boys ages 10 and 14, and to be incapacitated is not an option, so I can only use imitrex when the kids are asleep or at school. I don't hesitate to use opiates when I'm in terrible pain but still have to be in charge of my family.

I think the main tool for us migraine survivors is to be as pro-active as possible with our doctors and be very aggressive about getting effective pain meds. Migraine survivors do not become addicted, we just become pain-free.

I've read about Botox injections as a treatment. Does anyone have experience with this?

Liza <lizonavon@hotmail.com>
Friday, November 1, 2002 at 11:29:52



This is going to help somebody. I've been a migraine sufferer all my life (I'm 50 now) and have, just like everyone else, tried all sorts of remedies without much success. I've tracked triggers, avoided foods and additives, watched my sleep. I've tried stress reduction, sleep apnia treatments, and a great number of medicines (I'm sure you're all familiar with them). Nothing was helping much. Imitrex was the best of the (non-narcotic) bunch, but took forever to work and has a rebound effect on me. I was waking up nearly every morning at 3 or 4 am with a crashing headache, wondering if I could function that day, practically living on Imitrex, and watching the quality of my life get worse and worse.
About 2 months ago, I made an appointment to get my Imitrex refilled, and couldn't see my regular doctor. The doctor I did see gave me an armload of samples of various things with instructions to try them out and let him know what happens. Most of them were useless, all except one. It is called Toprol XL, and I believe it has cured my migraines after 50 years of suffering. Not lessened or diminished or abreviated the attacks, but completely eliminated them. I have not had a migraine for nearly 2 months, an unheard of amount of time for me. I take one small white pill a bit before bedtime, and do not wake up with a headache. This is absolutely unbelievable to me. It is what they call a beta blocker. I have tried calcium channel blockers before with mixed results, but this is far different. I just thought I should share my experience here, in case someone else might benefit. Ask your doctor about it, and give it a few days to work if it's recommended for you. I hope everyone finds something that works. I think I have.

William Wilson <mdracingart@comcast.net>
Saturday, October 26, 2002 at 20:40:25



Interesting to read how many women's migraines started after the birth of their first child! That was the case with me at the age of 21 - I am now 56. In those days it was 5 - 6 a year lasting 2-3 days & often necessitated IM Demerol. These days it's most days, usually early hours of the morning & mostly responding to Ergot. My problem is "the powers that be" have withdrawn the Migral & Ergodryl (the 2 most effective) & left me with Cafergot (least effective & most side effects) and I wonder when that will go. Then will go my life. Does anyone know of a live-in migraine centre in Australia for evaluation & treatment?

Judy <bpools@bigpond.com>
Thursday, October 24, 2002 at 01:00:09



Hello, i found this website looking for information and places to learn and help people who suffer with migranes.. I have suffered from migranes since i was 5yrs old i am now 21.. When i was younger my mother took me to several doctors to figure out what were causing me to have migranes as well as to how to prevent them.. I went through several diets as well as going through catscans and yet to this day no one has an answer.. Im tired of tests and diets.. Including im Allergic to most medications that are out there to help those who suffer from migranes.. Seems like there isnt any help for me.. I have found that if i take medications that have caffine in them it seems to work (over the counter meds)... I wish that doctors would spend more time with patients that suffer from migranes so they can soon find an answer as well as help for those of us who suffer.. Well Im glad that i found this website... I went through and really found that i can relate to a lot of people here... Im just hoping to find people who i can share this with caus unless you get migranes you really just dont understand what we go through with the pain, medications, and tests that we are put through...

Cheyenne <lilpeachescream@yahoo.com>
Wednesday, October 23, 2002 at 22:59:14



HI everyone,
I just found this web page today and I think its great. I am 24 years old and I have been a migraine sufferer since I was 11 years old. As you can imagaine being a child with this problem was very difficult beacuse no one understands what you're going through. I cant tell you how many school events I missed or how many hours I spent in the nurses office. My migraines followed this pattern. I would know a migraine was coming because some part of my body, usually my hand, tounge, or lips would go numb. Then I would get some type of visual disturbance for about an hour. Then came the excruciating headache followed by the nausea and vomiting. It would usually take about 2 days to recuperate. My migraines pretty much followed this pattern every time I got one. After I graduated high school my migraines pretty much subsided for a few years. I would occassionally get one, but I learned to deal with that. Within the past few months they have come back. The pattern is now different.... Sometimes I get numb, not all the time. Then comes the visual disturbance....which is the worst part for me because its so bad I cant really do anything while I have it. Then comes the headach which is less inmntense then it used to be. I rarely have nausea now. The problem is I get them everyday now. My eyes are seriously shot. My perception is completely disturbed even when I don't have a headache. I look at parts of my body and then dont even seem like they belong to me. I have never taken prescription meds because I am afraid of them, but I cant live like this anymore. Does anyone have any suggesstions?
Tara

Tara <tb3cher@aol.com>
Wednesday, October 23, 2002 at 12:35:50



Something else I forgot to mention in my last entry was that my GP has warned me of a STRONG link between migraine and glaucoma, so make sure you all get your eyes tested, you never know.
I hope that didn't upset anyone :-)
Take care,
Emma.

Emma <emmaleahnorris@yahoo.com.au>
Wednesday, October 23, 2002 at 07:32:31



Hi everybody,
I have just received a very disturbing e-mail sent to me personally by Calla15@aol.com. Not only did she attack me for my last missive, she accused me of not knowing what it is like to have a migraine. The point (she obviously missed) is the fact that yes, although I have had every drug under the sun, including one that has rendered me infertile, I still try to maintain a positive outlook. I have had the infusions in my neck, they left me with a numb neck for four weeks, that was it. Yes, I have had several of those week long migraines, in hospital hooked up to a drip, because I cannot keep anything down. I do not respond to triptans Zomig, Emigran, we all know what I am saying. I have been through hell, just like all of you, with this condition, but I REFUSE to let it rule my life, there is more to me than my migraines. I have had migraines for 15 years, I have fought off a morphine addiction. I'm the real deal, and I don't like being told that I don't know what it's like to have a migraine, because I really really do.
Calla15 really upset me with her accusations, saying I was one of those people who say 'you're just faking it' or ' it's just a headache, get back to work'...... I am not one of those people, I'm one of the ones who has had it said to me. Maybe Calla15 was having a bad day, I really feel for her, she has had a hell of a bad time, but I really hope that the next time she contacts me personally is to apologise for abusing me in such a way.
To the rest of you, try to mantain a positive outlook and just because there is no 'magic pill' that can take away our migraines, each one of us will find our own 'concoction' that works for us. To anyone else who was offended by my last entry, I apologise, but I meant no disrespect, I just wanted to remind all of you that there is more to you than your migraines.
Emma

Emma <emmaleahnorris@yahoo.com.au>
Wednesday, October 23, 2002 at 07:22:16



Hi everyone, I hope this finds all having a good day. I had an occipital neurectomy on Oct. 15. This is where they shave your hair (about 2 inches around the back of the ear) and cut the occipital nerve as it goes into your brain. This is a last resort as once it's cut, it's cut! I have had more injections than I care to count and not one of them worked. The Dr said it could be that I had a lot of scare tissue built up around the nerve. Turns out the nerve was "bunched up". I have been having these headaches, along with my normal migraines (if we can call them that) for 3 years now (migraines since 16yrs old).

This is not an operation to take lightly. I did not fare well during recovery. They had given me over 16 cc of morphine, demarol, toradore(I think this is what they said) plus my oxycontin. I heard the nurse telling my Mom they can't give me anymore pain medicine, that this should have killed a horse. It was an outpatient procedure which was terrible. I was there from 7am till 9:30 pm when they were starting to close the floor down. They finally called the Dr at home and he told them to give me oxycontin and that helped a tiny bit in getting me out of there.

Once home I hit my medicine chest of Zomig, demarol, and oxycontin. My teeth, jaw, ear hurt like I was punched all day. I can't even touch my neck or spine. It hurts to move, talk, eat. I couldn't move my head left or right without intense pain. This has been a terrible experience. I pray in the long run it works, but right now I don't know if I would go through this again.

Two days after it was done and I went in for the nurse to remove the dressing she said the other patient who had the same thing done before me was having a rough time too. She had the Dr write a script for steriod to bring the swelling down. I don't feel heat or cold, but still a strange sensation when I lightly touch my head. It feels like if I do touch it my head will split open. It hurts to move, sleeping is about 15 minutes every now and then. I have had about 2 hours a day. Today is the first day I can sit up for more than 15 minutes and try to type.

The best news came when I noticed my paycheck was short $140. I called my boss and when he called back he said I have bad news, the 39 weeks you thought you had, well you don't and as of last week you are on 1/2 pay. He never aplogized for telling me back in May when I got my 20 years in that I didn't qualify for the 39 weeks you get with 20 years of service. I wouldn't have had this done had I known this. I was supposed to have 6 weeks to recover with physical therapy mixed in. Now I have to go back next week (if my Dr will release me, I doubt it). Trying to recover and stay calm so my nerves can heal and relax is gone. I have to worry about having to pay 4 weeks of bills on 1/2 salary, plus going back sooner than I should. Sorry to dump this out, but all I have been doing is crying. It seems like I get 1 step ahead and someone or something kicks me back 20. I will post a new note when I get more info from my Dr and to let you all know if this worked or not. My Aunt said a friend of hers had this done 18 years ago and has not had a headache since! So I pray this works and maybe it may help someone out on this site. Thanks all for listening! My prayers are with you all.

Sheri <zeusnkatz@aol.com>
Monday, October 21, 2002 at 18:33:04



hi...im 30 years old and have been having migarine headaches since june of this year. so far, theyve been infrequent(every 4-6 wks or so) and on only two occasions have been very dibillating. The first time it came on i had what felt like a cluster headache(ie tightening around base of skull etc) however it would not go away w/treatment(tylenol, motrin) and the pain was fairly constant for over a week. the doctor ruled out tumor or aneurism based on no blurred vision etc. it seems that they come on with stress. lately,(last 2 weeks) ive had some "tingling,tightening" of the skin on face from below eye on left side to above lip it feels like skin is "tight" and being "pulled" ther also seems to be a little "fatigue" feeling and these symptome come/go and seem more prevalent when im tired or fatigued. please let me know if anyone else has experienced these symptoms. thank you

jessic < goodychrchgrl@hotmail.com>
Sunday, October 20, 2002 at 19:33:54



This is my very first time on this site and infact it is probably one of the first times that I have discussing my migraines with anyone other than my neurologist and immediate family. I'm 23 and have been experiencing migraines since I was about 17. I've missed out on numerous activites like school dances, graduation activities etc. because of migraines. I don't know many other people who suffer from migraine and don't have a lot of support. Today I had to go to the emergency room at the hospital because I couldn't keep my Imitrex tablets down and was put on an IV. My question is this: I feel like I am constantly putting drugs into my body. I take prevention medecine, abortive medecine when they don't work and nothing seems to be doing the job. I'm concerned with what kind of effects all these drugs are having on my body, now and in the future. I am interested in trying some more herbal remedies. I have tried feverfew tablets and rosemary concentrate, neither which have worked. Does anybody have any other suggestions???
Allyson in Canada

Allyson <AllysonLeigh@hotmail.com>
Friday, October 18, 2002 at 15:50:48



I posted on 9-19-02 regarding my success w glycotechnology.
1 pill and 75% of a teaspoon 2x's a day=2 migraine medication H/A's since 8-10-02. THE LONGEST H/A MEDICATION FREE TIME IN 20 YEARS! This stuff, whatever it is, works for me. I still
get H/A's but they go away w plain tylenol and a non-narcotic
pain killer.
Grace, lew

Lew <ljohn_97123@yahoo.com>
Thursday, October 17, 2002 at 03:39:22



Hi everyone! I can't tell you how relieved I was to find this page. This is the first time I have written in, but I have spent about a month reading every entry in this journal as well as doing enough research to write my own book. It's sad how many people suffer with migraines and there is still nowhere near a dead set cure. I feel for all of you who have had to endure this sickening curse. With that said, let me tell you my story.
I am fortunate compared to most of you, I didn't begin experiencing migraines until this past month. I'm a 24 year old mother of two who, up until now, rarely even experienced a mild common headache. It all started when I came down with all too common strep thoat. I went to the doctor, got my antibiotics, and expected to go on about my business. I am a first grade school teacher, so naturally, I was out of work for a few days to prevent spreading it to the children. After two days of being on the antibiotics(Amoxil), my condition went from bad to worse. Not only did my throat hurt more, but now my head felt like it was going to split open. By the third day I was so miserable I was almost suicidal. The pain that had begun in the lower back side of my head had now spread throughout, I was unable to think clearly, walk straight, see straight, I was vomiting every 20 minutes so profusely that I burst a blood vessel in my eye, severe sensitivity to light and sounds, cold sweats, diarreah, you name it. My husband finally persuaded me to go to the ER. What a joke.
In the ER I was basically a guinea pig. They started out with a catscan, then an arsenal of x-rays, what seemed like a gallon of blood, then last, but definitely not least, the spinal tap. I still haven't recovered from the spinal tap(but that's another story for another day). After the spinal tap, I begged for some relief. Between the unbearable pounding of my head and the throbbing in my back of where that ten inch needle had been, I had had all that I could take. That's when the nurse came in with the demerol injection and told me I was being admitted to the hospital for observation until they could pinpoint my diagnosis. The next four days are not much more than a blur to me. I was given demerol injections every 4 hours and 10mg of Percocet every six hours along with 5mg of Valium every 6 hours. I was nothing more than a zombie. What I do remember was the endless testing. Several MRI's, more x-rays, more blood, and oh yes, I remember them having to change my IV three times because my veins kept blowing out. The headache still had not subsided by the fifth day. The neurologist said it was caused by sinus problems and ordered a regiment of IV of antibiotics. Two hours later, the ENT(ear, nose & throat) doctor came in and said that my sinus x-rays looked fine and had the antibiotics stopped. I was discharged that day. Told that they hadn't really pinpointed what was wrong, but it was possible that I was suffering from severe migraines. The last sentence of my discharge paper reads: "testing was inconclusive...suspect migraines...patient responds extremely well to Percocet." Who the hell doesn't respond well to Percocet??? I was sent home with a nice big bottle of it and told to see my primary care physician.
One week later I had a miscarraige. I did not know that I was pregnant. I assume neither did the hospital. After a visit to my OB-GYN, I was informed that I had been pregnant with twins and one of them had yet to come out, but had no heartbeat. I lost that one a week later. I had a nervous breakdown that week. I don't know why I lost those babies. It is easy for me to blame the hospital for not giving me a pregnancy test and putting me through all that testing and medication. The truth is, we will never know why. I will never forget though. What I had to endure and see will leave scars in my memory forever. Loosing my babies did not stop the migraines though.
My PCP has finally decided to send me to a neurologist. We tried Imitrex, Zomig, and several other samples I don't remember the names of. None of them did a thing. Except the Percocet of course. My doctor and I have decided that 12-15 5mg Percocets a day is not a healthy diet. It's the only thing that keeps the migraines tolerable right now though. I'm truely scared to stop taking them and also terrified of becoming addicted (if I'm not already). I don't run my life anymore, the migraines do.
I hope that my story has given you some insight, at the very least, I hope it touched your heart. These continuous migraines are ruining my job and social life...as well as my marriage. Anyone who has any advice PLEASE feel free to e-mail me. I do not want to live my life in constant pain and frustration any longer. Thanks for reading my too long story.


Rachel

Rachel <elegant.impressions@verizon.net>
Wednesday, October 16, 2002 at 22:33:20



I am 31 yrs old and I have had these migraines for the past 3 years. They are not anything like the headahces I've had before. I am so glad to have read these messages and see that there are others out there that describe what I am feeling. My doctor has given me all kids of perscriptions for the last 3 years and nothing works. So I was thinking maybe its all in my head. I have gone up to a week in a half with my migraines/headaches, and i feel so helpless at the fact that I've tried so many pills and nothing works. At times I wonder if maybe this it for me and I wont be able to bear the pain anymore and maybe this is the end. If anyone has any ideas or suggestions as to what else I can try I will sure appreciate it. I dont drink coffee, I dont drink sodas, I dont eat/drink a lot of dairies, and I've stop eating chocolate, I know these are some of the causes (according to the literature i've read). So what could possibly be triggering my migraines/headaches.

Anna <Olivia099@hotmail.com>
Wednesday, October 16, 2002 at 18:10:47



During a recent migraine i noticed that although my forehead area was warm and pulsing with a sweaty heat my feet were tingling with a cold sweat. The idea came to me that if i could somehow manage to get some of this blood back down to my feet it might help to reduce the supply that was pulsing through the vein at the side of my forehead. I started to massage my feet and thought maybe reflexology will play its part in increasing circulation now. However my feet were too cold and sticky, my stomach too queasy and my head too sore to persevere enough to create any beneficial effect. I just felt the massaging movements, although lethargic, were contributing to my increasing stomach upset.
Feeling creative, perhaps due to the increased blood supply to my brain, I stepped into the bath and ran warm water until it came up to my ankles. The pain subsided fairly quickly as my feet changed colour from a deathly white and blue colour to a glowing red.

Hugh
Saturday, October 12, 2002 at 06:07:48


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