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!





Hello all. It's been a while since I've posted and I've missed the interaction. I'm a 29-year-old who has had migraine since I was 4. It's been hell, to say the least. Most recently, I have been seeing a neurologist who looked me in the eye and said, "You told me you were at the end of your rope, don't go there yet -- Let me work with you and then we'll talk." So far, he's been doing very well with me. I just had my second set of Botox injections two days ago -- let me tell you, it hurts like crazy, but he's very hopeful that it will be working. I'm also on Zonegran 200mg, Toprol XL 100mg, A combo pill with riboflavin, magnesium, and feverfew, and other meds for different problems, but the most interesting thing is this. I was due to be married on September 5 to a man I was with for 6 years -- Two days before the wedding, he tells me he just couldn't do it. He had 3 reasons -- 2 of them very stupid, but one of them, this is a clencher -- my health!!! He couldn't marry me because of my migraine headaches!!! What a jerk!! But the most interesting thing to me is that sincce he left me, I have not had a single migraine! Let's see, maybe he was a cause? I know that I will never be migraine free, but I now know that stress is a major factor. It is such a good thing that I didn't marry this guy. Seriously. I made so many compromises for love and it just wasn't worth it! It cracks me up that I haven't had a single migraine since he left and before that I was having one to three a week!! It just amazes me. Honestly though, to know that he didn't want to marry me because of my health, my migraines, when all that time he seemed so caring and helpful to me. That really hurts. What a bastard. What ever happened to "in sickness and in health?" How could someone do that? It scares me to think that I may not ever be married because I have migraine headaches. Maybe it's not worth it. I don't know. It's over with this guy, but that pain from not marrying me because of my migraines, well, it's not over. Anyway, I guess I have rambled enough -- I knew someone here might understand. Thanks for listening. Anyone who would like to e-mail me, I'd love to communicate with you.
my e-mail is clynnh@yahoo.com. Thanks.
Cynthia L. Herron

Cynthia Herron <clynnh@yahoo.com>
Thursday, September 25, 2003 at 11:42:42



Greetings everyone! Wow, there are so many more entries since I was last here! I am so glad that all of you found this site! It has been my "bible" so to speak since I was first diagnosed with chronic daily migraine almost 5 years ago. I finally got through my divorce (which started back in May!) and I won custody of my 5 year old son!!! Woo Hoo!! My ex tried to use my disability against me in the custody battle, but with the information that was accumulated by the doctors and internet, the judge understood that there were no grounds there for taking my son, thank the heavens! Just goes to show that no matter what pain we live with, we are still capable of living full and wonderful lives! I still have found no medication, besides the percocet 10/650, to help in any way. It is extremely frustrating, but I am holding onto hope, anyway.
I am due to go to a Pain Management doctor on the 30th of this month and am really not sure what to expect at all! If anyone out there has any experience with a DO, please write and let me know. Some of the paperwork she sent me to fill out before my visit was intense and I am not signing anything she gave me until she explains why some of the forms were sent. Well, I hope that all of you find support in this wonderful site and remember that we are not migraine sufferers, we are migraine survivors! That is the kind of strength that it takes to live with what we do on a daily basis!

Best to all!
Bonnie Allen
http://www.members.aol.com/TheBelle2@aol.com

Bonnie Allen <TheBelle2@aol.com>
Tuesday, September 23, 2003 at 10:15:08



Hi!
I have to say how wonderful it feels to find a place where everyone is going through the same things I am and I don't have to make excuses, or offer explainations, or defend my disease.
I can't thank you all enough for answering my post.
Sometimes it seems like I spend half my energy fighting the world and the other half fighting the disease. Too many people, too many doctors, are ignorant when it comes to migraines. They think we're whiners or drug seekers or looking for an excuse not to suceed at life. I've lost friends becuase I had to cancel one too many plans, lost boy friends because I had beg off one too many dates, lost jobs becuase I couldn't function...it's too easy to give up, to stop trying to be a funtional part of society. Too easy to say, "Well, they've already written me off."
It's taken me years, but I've started to put my life back together again and I'm glad to have you all be part of it.
Thanks-
Kell

Markell Lynch <markelllynch@hotmail.com>
Friday, September 19, 2003 at 12:11:28



I am a 37 yr. old wife and mother and have suffered from severe migraines for over 20 yrs. My headaches are so bad that I have been hospitalized several times. When I was pregnant they worsened during the first trimester and then improved after that. I also suffer from fibromyalgia which many say feels like a total body migraine of which I agree! I have found that the one thing that helps me is taking a medication called norco 10/325 mg. 4 times a day. I started taking this for the fibro and found it to also help with the headaches. Don't get me wrong, I still get headahces, but no where near as severe as they used to be! I am worried about taking the narcotics and building up a tolerence, but it has been the only thing that has even come close to bringing my pain level down. I have been a patient at the Cleveland Clinic headache clinic for many years and they do a fantastic job! I have tried every possible treatment that has come out including all the triptans and intravenous magnesium. Once in a while when I get a migraine the triptans will help, but not by themselves. I usually take Axert or Frova. The frova has a much longer half life so if you experience a reoccurence of your headahce after takinga triptan med, then try the frova. I hope medical science can find a cure for these debilitating headahces so we can live normal lives without medication. God bless. Please feel free to e-mail me with any questions or comments.

Donna <jayanddonnastec@cox.net>
Friday, September 12, 2003 at 19:27:18



Hi,

I just logged on this site while trying to find migraine support groups in Houston, TX, where I live. I am 33 years old and have had migraines since I was five years old. For the last three-four years, I have had at least one a week that is incapacitating -- lasts 3-4 days and I am nonfunctional. I began talking imitrex and heavy doses of Aleve together and that does the trick. It was amazing for the first time in my life to be able to not miss any work or social things -- and now I can't imagine going back to the way life was before. I simply can't work with them, the way they were before.

However, for the past year, I've been trying to find something that I can take while trying to become pregnant. I've tried all sorts of antidepressants as preventatives, to no avail -- prozac and wellbutrin. I've tried Zomig and now, a few narcotics like Vicadon and Tylenol 3 and they don't do a thing! I tried acupuncture for three months and while it helped me relax and it seemed that my headaches were becoming more tolerable, they were still bad and I simply couldn't afford it. I don't know what to do anymore...everytime I get one, which is still more than once a week, I tell myself, I'm just going to try to stick this one out...and I always succumb to imitrex. I just can't do it anymore. Do you ever wonder what it is that you did in your lifetime to deserve this? I don't know what God wants me to do.

Anyway, it is good to be able to write this out and send it to people that know what I'm talking about! Thanks for listening -- Anne Amis (anneamistx@yahoo.com)

Anne Amis <anneamistx@yahoo.com>
Friday, September 5, 2003 at 09:54:54



hi everyone

i am new to this site and am amased at all the different types of pain people are under. i to suffer from terrible migraine though mine is due to TMD/TMJ to which may not be the actual problem i have. sounds confusing? i,ll explain. i have TMD/TMJ which causes me to have terrible migraine basically 24/7 if i don,t treat it, tension(severe neck, shoulder and back pains)when in process of migraine i get unbearable pain in my eye and temple. these are my symptoms for TMD?TMJ which can lead to insomnia as i can not sleep for more than 2 hours at a time and should i sleep the thought of waking with more pain drives me not to sleep. however TMD/TMJ is not the main issue, the main issue is to find what has caused the dissorder i.e grinding or clenching of teeth whilst initialy asleep, a poor bite,tooth ache, etc etc. everyone is different.(search web for TMD/TMJ.
how do i cope i now wear a mouth guard from my dentist 24/7 to stop the teech comming together and take remedienr tablets 2, 4 times daily and sleep on my back with my head tilted slightly back. i try not to talk to much or do anything that involves using the jaw. i also use a covered ice pack to the base of the skull, neck muscles, under the ear and jaw joint this initialy hurts but the pain does ease. now i am slowly getting back to normal. though still scared and depressed if returns.
i hope this can be of use to fellow sufferers.
PLEASE ALSO LOOK AT THE NEW NTI/SS DEVISE IT IS CLAIMED IT HAS AN 82% REDUCTION RATE IN MIGRAINE PAIN AND IS NOT A DRUG. THOUGH THIS NEEDS FITTING BY YOUR DENTIST AN COSTS APROX 250 POUNDS. I,M SAVING FOR MINE NOW.

this is not a plug for the device just passing on valid information i have amassed since being over taken by my dissorder.

please feel free to email me at: linds@bob93.fsnet.co.uk

rob <linds@bob93.fsnet.co.uk>
Tuesday, September 2, 2003 at 17:38:15



Just wanted to say Im delighted to have found people I can relate to. I have been suffering strange attacts for 10 yrs. I was recently diagnosed with Bickerstaff migraine. I have never had a headache that lasted more that 5min. But that 5 min. is agony.I usually lose visin like someone has a flash light in my eyes, then feel like im going to pass out, then I'll have seizure like symtoms,like legs shaking. hands, and head thrasing. My blood pressue usually goes as high as 200/160,then i can't stop urinating sometimes my fingers go numb and cold. my family always calls an ambulance against my wishes. By the time I get to ER my symptoms seem to subside, then Im wiped out. My triggers are caffine, chocolate, weather change, to litlle sleep,or to much sleep. Dieting,forget it, Im usually hospitalized very weak with all the above symtoms. But I believe artificial sweetner may be the culprit. I don't know another person who has ever been diagnosed with BSM, most people have never heard of this before. I take 150mg. of toprol, helps with blood pressure,tacacardia, and with migraine. But my symtoms have only gotten worse. Maybe I don't get the lasting headache because of the medication. My nuro. told me to take 400mg. of B2 and 250 of magnisium daily. he said it can take up to 3 months to work.Has anyone ever been diagnosed with BSM. Please let me know if anything can help.
Thanks,
Michelle
LaMamps@comcast.net

Mike McKinney <LaMamps@comcast.net>
Saturday, August 30, 2003 at 22:42:24



Gosh, I really hate the fact there are so many of us out there!!! When I was 18 and in college, I dove to the bottom of a 12-foot deep swimming pool and the pressure didn't release from my ears causing my very first migraine and Belles Palsy. The right side of my face was paralyzed for two months. On a plane trip, as we gained altitude, my ears popped so loudly several people looked at me strangely! The pressure being relieved, the Palsy went away immediately, leaving me with a tremendous migraine. Not only did I suffer the horrible pain, I also had the sensitivity to light, odors and sound. I would have to retreat to a cool dark room with no sounds or smells. My young son had to wait on me hand and foot for hours! Eventually, the kaleidoscope vision would cause nausea and vomiting. Then came the dull pain that lasted for days. I saw several doctors, none of which had a clue what was wrong with me. While in an ophthalmologist�s office, I was educated on migraines. That was thirty years ago, I have taken Imetrix shots and so many other things that I can�t remember them all. Oddly enough, an optometrist recommended Excedrin to me, his wife was also a migraine sufferer. For years now I have been taking Extra Strength Excedrin with wonderful results. It is absolutely the only thing including prescription drugs that has given me any relief.
However, the story doesn�t end here, I now suffer from abdominal migraines!! I have just started Enderol, hoping for good results. I know what you all are going through, and I know we shouldn�t complain, but sometimes it feels good to hear someone else�s way of dealing with an illness you have in common. God Bless

J Young <jyoung@lee.k12.ky.us>
Saturday, August 30, 2003 at 19:28:35



I started having migraines around the time that I reached puberty. In those days (I am now 55, they treated you mainly with cafergot or ergotamine, which really only helped at the aura stage. I don't always get the aura. Fortunately for me, during my child bearing years, my migraines all but went away... Now, at menopause, they are back with a vengeance.... often lasting 3-5 days- nausea, poor vision in right eye and the pain in my head. The other day, when I was throwing up at work, someone gave me maxalt. I usually would never take a prescription drug from anyone, but I was desperate! After about 20 minutes the nausea went away and the pain stopped 10 minutes later, I felt fine!!! Such relief!! The only side effect was fatigue, but who could tell if that was from a four day migraine or the meds. Has anyone tried this? What was your result. Hoping this wasn't a one time thing,
Devorah

Devorah Grunau <dgrunau@aol.com>
Friday, August 29, 2003 at 09:40:11



Hello,

Thank God for this site. I just discovered it a few weeks ago and it has given me hope. I am 42 years old and I have had migraines on and off since I was 11. I have had every test concievable, taken almost every preventative there is, gained weight, lost weight and gained it back and so on. I have managed to get by with my migraines until the last eight months or so. My migraines have come back with a vengeance! I have had one now for almost seven weeks. (It stays at an even #5 (migraine sufferers know the drill 1-10) which I can barely live with and shoots up to a nine or even ten at times sending me to the ER for dilaudid and vistiral in heavy doses. Some of the doctors there and at the clinic I go to have labled me as a drug seeker!!!! I fear going to the Er because of that. The other doctors and nurses though understand and know I am being honest with them and only want the pain to be gone.
My life is a living hell and my second marriage even though strong is getting a little bumpy. I am in grad school and am not sure if I can finish! I have worked hard the last seven years to get where I am in my education. I have a possible job at the university to teach after I graduate but I am not sure if I can make it!
My doctors feel I need to be off all drugs (been there done that, it is no rebound) and need to calm down. One Doc even said to me it was just a little headache, toughen up and stop acting like a baby, that I had no clue what true pain was like. He said a lot more but I won't go there. I wish I could find a doc that had compasssion and understanding. I am not looking for narcotics!!!! I just want my life back! I want to be a wife and mom again. I want to do everyday things that everyone usually takes for granted!!!!! I am going insane!!!! I have done every treatment and med. I am about ready to look for a witch doctor, that is how desperate I am. I am in a living hell.
Bekah Wiege in Southern Oregon

P.S. I did find a couple of combinations of meds but docs won't go there! One is dilaudid a heavy narcotic. It doesn't give me a high or anything it just makes it possible to be a mom and wife. No pain thats all. The other is using medical marijuana. Not sure about that one as I would have to ingest not eat (have asthma). Maybe I am old fashioned.

Rebekah Wiege <rebekahschwend@yahoo.com>
Friday, August 29, 2003 at 04:13:03



Hey there!

Well I've been reading this journal and I see a lot of repeat posts of pain and suffering and not a lot of promise. I don't have any great news to offer either. I can tell you that I, like you have tried everything and too am at my wits end. I suffer from stress tension headaches, that if untreated turn into raging migraines (as if the tension headaches weren't bad enough). Attempts at pain killers to treat the tension headaches have me feeling like an addict looking for the next fix. If you want information on different treatments, feel free to email me. I've probably tried it and am willing to share my experiences with you. Currently my drugs of choice are Maxalt MLT, which are 10mg and oral disintigrating. If I take it as soon as I catch the migraine it helps tremendously (but doesn't completely stop) the headache. It's liveable. The tension headaches which at this point are nearly 24/7... I give up. The only thing that works is Stadol NS and it's so addictive I a) can't get it and b) when I can, I like it too much. The side effect for most is drowsiness, but I've found if I keep moving around it doesn't make me sleepy and most of the side effects are about zero. I like it, it makes life tolerable and if that makes me an addict, I guess I am. After 20 years of headaches, you just get SO tired. Someone who doesn't feel it, could never understand. This network of people to share information about treatments and doctors who are willing to listen and help are our best hope.

Peace,
Tina

Tina <knight@owbn.org>
Thursday, August 21, 2003 at 19:02:40



Hi, I am a 37 year woman who lives in Australia, I suffer chronic migraines that are slowly but surely destroying my career despite having an extremely understanding employer. My ever patient husband is hanging in there. I have had every test the doctor can come up with and I have tried just about every drug, the only thing that gave me a reasonable amount of relief time wise, was Chinese medication called Four Noble Ingredients. I am now back to a living hell, my whole head is one enormous ball of pain, with vomiting, I am reduced to injections to put me to sleep in the hope that when I wake up it's gone, an unsatisfactory situation that usually results in at least two injections. In the last two months I have had migraine for a month of the period. You cannot function on a reasonable social level when you live in this nightmare.

Tracey <fengshui1@msn.com>
Wednesday, August 20, 2003 at 04:35:11



after reading so many entries of seemingly impossible cases, i thought my own success could contribute. i am 23 years old, and have had migraines since i was 4 or 5. my dad used to have cluster migraines and his mother had classic migraines. when i got to high school i was perscribed inderol and midrin by dr. diamond, a migraine specialist based in chicago. since then he has increased my dosage from 40 mg to 80 mg inderol and prescribed zomig, (which is a wonder drug compared to the imitrex, midrin, and cafergot). while i havent gotten rid of the migraines completely and probably never will, ive managed them. its such a great feeling knowing that if i get a killer migraine and can't open my eyes, that i can take a tiny pill and, barring throwing up, in an hour i know ill be ok. i can also take it before all the pain, when the signals start, circumventing the pain completely. i have slim to no side effects from either pill.

here's my email address for any further questions: maakied@hotmail.com
be sure to write 'migraines' in the subject or else i will delete it.

sara tillmans

sara tillmans <maakied@hotmail.com>
Wednesday, August 20, 2003 at 00:12:17



Hi everyone! As a quick reminder I am 32 years old and have suffered from migraines for 24 years. I have found Imetrex and Zomig to work very well, but I don't have the occassional migraine - I usually get them 4-5 days a week. I had them EVERY day in July. Since my husband and I want to get pregnant and I can't take the medicine that helps I have resorted to acupuncture. Last week, instead of 7 migraines I had 2! I truly hope this will work. My advice is to find a Chinese doctor. Mine is located in New Haven, CT. Many chiropractic doctors do acupuncture but can get certified after a very short time. So far I have gone for 3 treatments and have had over 40 needles during each treatment. Also I have heard bio-feedback works too. If you have not yet gone the herbal route you should try it. It did not work for me, but it has worked for other people. Also, TMJ and other related jaw problems will give you migraines. If you haven't gotten checked by your dentist, you should. Other people have also been helped with chiropractic care and cranio-sacral therapy. I feel I have become an expert on many of the therapies. Even thought none of them have helped me, there is still hope for you. I will update everyone on my acupuncture results.

Tamberly
Monday, August 18, 2003 at 09:26:54



Hi there, I am new to the whole situation of Migrains. I have been in misery for the past 3 months. Dr. after Dr., drug after drug. Nothing seems to help me at all. I can't work, drive, or do anything. I have had a constant headache for the past 3 months, it has never gone away. I was wondering if any of you have had this happen. It seems like most people that have them, that they only last for a few days tops, and then they are ok. I can get migrains that last for up to about 4 days at a time, and when they finally leave, I still have a headache, which varies in intensity throughout the day, but is always present. I've had all the CAT scans, MRI's, Neurologists, sinus specialists, and no one can help me. It has gotten so bad, that for the past 2 months, my memory is shot, I slur words together alot, see spots extremely often, and at times, I don't know if I'm having a dream, or hallucination. Dr's tell me it is all a side effect of having constant headaches, that my brain can't recover. I'm just hoping I'm not alone in this, but I don't wish this on anyone. I'm scared to leave te house, because I can turn white, and get a Migraine within minutes sometimes, with no warning. This is ruining my life. I can't even bend over to pet my new puppy, let alone play with him. When I feel a little better I'm going to look further into the site, as I can only spend a few minutes at a time on a computer without problems. Another quick question, which I'm sure someone else has had to ask, but please forgive me for not being able to look at past messages, is about accupunture. Anyone had any success with it? and is it usually covered by Ins? I can't read my Ins handbook, because the print is too small for me. Any other "new ageish" type cures, since normal meds aren't helping? I heard aromatherapy, but smells tend to set off migrains for me, so I'm scared to try. I hope this doesn't matter, but I am a male (and 25) but this is the best site I've found in my limited time of computer using. Thanks for any, and all help. You can post here, or e-mail me direct at danballa@hotmail.com

Ben Johnson
Marysville, Oh.

Danballa <danballa@hotmail.com>
Sunday, August 17, 2003 at 19:53:09


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