My headaches begin while I sleep and I wake up with a full blown attack so any of the meds that are to be taken at onset are of no use to me. A friend turned me on to Equinox vitamins and suggested I take two pills daily of Balanced woman (my migraines are very much menstral related), Tolerance (for stress) and Circulatory Support. I went 6 weeks without a headache. I thought I had it licked since that was the first time since in 40 years I went that long without a migraine. When I did get a headache, Exedrin took care of it.Soon, the vitamins stopped working. I was waking up with headaches everyday and went back to the doctor. He told me I had "transformational" migraines. Those are less severe attacks but with greater frequency. He explained that they usually occur at the onset of menopause and the headaches will either go away when I am done or will continue.My depression deepened because by this time I was no longer able to function at work and was beginning to have to take time off. I just don't have the stamina to continue my daily life as I once did.
To add to my troubles, I was getting rebound headaches from the Fiorinol which was the only med that was working for me. He prescribed Ultram as an alternative to the Fiorinol. It didn't work either. He put me on a daily dose of Zoloft , 50 miligrams a day. Some relief but I still had breakthrough headaches.
My last headache last lasted two weeks. I called the neurologist again and he increased the Zoloft to 75 miligrams daily and gave me a steriod for the short term called Dexamethasone. I had to take 3 small doses before I got relief. I took me awhile to adjust to the Zoloft so again I was off work. Both the Neurologist and my OB-Gyn don't want to put me on hormone replacement because I am still pre-menopausal and they fear that the headaches could get worse. I get my period every 3 weeks now and a migraine during ovoulation and during my period. So, let's see, that gives me about 1 week per month when I don't have a headache, unless of course the weather dramatically changes or I'm under stress.
For the first time in my life (I'm 50) I feel that I am disabled because in the past I have forced myself to live a normal life and refused to give in to my condition. I no longer have the strength to do that. My 20 year old son has been getting migraines since he was 10 and I have encouraged him to not let them get in the way of his life.
None of the meds I have taken have given me relief for a long period of time because my system just gets used to them and the migraines return. But, most of them offered me some relief even for the short term. So, I hope this helps someone. Those dark, quiet rooms are lonely.
I would like to hear from other people in the same position as I am and get a few pointers on what I could be doing to get some relief.
Please contact me by snail mail at:
Donna Stevens 19 Engrem Avenue Rutland VT 05701-4516
Your website is a God sent. I was so happy to read other peoples experience with migranes. I have learned so much from the informative pages. I hoped to contribute my story and maybe help someone else.
On halloween (1996), I went to a party. I drink occasionally but only wine or coffee liquors. I stopped by the liquor store to take some booze to the party. Rum was on sale and I hadn't had any in years, so I thought rum and coke would be great.
I woke up the next morning with the most incredible headache I have ever had. I thought it was just the rum, took some aleve and zombied through the day. On Nov 11, I still suffered and went to my family doctor (whom I truly adore). He insisted it was a sinus infection and prescribed antibiotics, propoxy for the pain and bromfed for my sinuses. He told me to return on Friday, Nov 15 if I wasn't better. I missed work all week and went back on Friday. He prescribed different antibiotics and more pain pills. On Sunday, Nov. 17, I started vomiting. Finally, I couldn't take anymore and my husband took me to the emergency room. They gave me shots for the pain and decided to do a CAT scan. The scan was abnormal, (one of the scariest moments of my life, when they look at you and say matter-of-factly, oh your CAT scan is abnormal). I was referred to a neuro-surgeon and seen him on Tuesday, Nov 19. He told me I have a cyst in the middle of my brain. He prescribed more propoxy for pain and sent me for an MRI. On Nov 26, I went through the MRI, the only great thing was the valium for claustafobia. Dec 10, I went back to the neurosurgeon. He recommends several surgical procedures and suggest I live with the pain until after the holidays.
Well, I must tell you it was an awful holiday season for myself and all of my family. I am 34 years old, married for 17 years and have two children, a 17 year old daughter and 13 year old son. I was prayed for a lot and was off work for several different days and my job was great about the time off.
On Jan 2, I seen the neurosurgeon again and the recommendation was surgery with a shunt. This plastic plumber-like device would be in my brain draining for the rest of my life. My insurance company prefers a second opinion and in the afternoon on Jan 2, I seen another neurosurgeon. He said I did not require surgery, that this was a defect from birth and I should see a neurologist. Well, few words could describe how overjoyed we were.
On Jan 8, I seen a neurologist. The diagnosis is migranes and he prescribes Imitrex injections and tablets and propanol. The imitrex makes me worse and the side effects terrify me. My daughter would give me an injection as she and my son stared at me for 5 minutes to make sure I wasn't going into cardiac arrest. It was crazy. I seen the neurologist again on Jan 13, the propanol gave me extreme gas so he changes me to amitriptyline. Four days later, I was broken out in hives from the amitriptyline. I only took imitrex tablets until Feb 7. On Feb 7, the neurologist prescribes verelan and I ask him if something else would work better for me than imitrex and it is so expensive. My insurance pays 80%, but even my 20% was astronomical when you live on a budget with two teenagers. He prescribed ultram. It made me very ill.
I finally got frustrated with him. An office visit was $180.00 and I had been 3 times and still had the headache so bad I wanted to die. On Feb 27, I went back to my family doctor and he put me on propoxy and norvasc 5 mg. I finally started to feel a little better. On Mar 14, he prescibed Norvasc 5 mg in the AM and PM and propoxy and salsate. I am in extreme depression from having the headache for 5 months with little or no relief. So he put me on Zoloft to try and lift my spirits. Now I take norvasc 5 mg every morning and evening, Zoloft, 100 mg every morning, propoxy n 100 w apap every 4 hours, salsate every 4 hours, and my headache is basically gone. I still about twice a week feel as if someone hit me very hard in the back of the head with a baseball bat. Maybe I should have had surgery, I don't know; any suggestions? Excuse the rambling.
---Sher dolleys@hq8af1.barksdale.af.mil
Hi! My name is Heather and I can relate to all of the other stories I've read so far. My headaches started about 2 years ago and haven't stopped since then. I wake up and go to sleep with a headache everyday. It gets so frustrating sometimes. Some days I wake up and just want to start screaming and pulling out my hair!!! I don't of course. I'm 20 years old and feel like I'm 90!!!! *smile* It just doesn't seem fair that I, or anybody for that matter, should have to go through this ordeal. Going to the doctor doesn't seem to help. I've been on countless medications, all of which make me tired and don't do much for the pain. I've been the emergency room many, many times to get a shot of whatever will make the pain stop. I try to watch what I eat, my mother got me an herb pillow to sleep on...nothing seems to help. I, too have been a guinea pig with no results. The one thing that did give me temporary relief was acupuncture. I went, brace yourselves, 2 months without a bad headache! Ya hooo!!! Boy was I in heaven. Of course, that eventually wears off and I'm not exactly loaded with cash, so I haven't been able to do it again. But I do recommend it. I'm in the military and these doctors don't care and don't understand what you are going through. They think you are lying to get out of work and want to hurry up and get you in and out of their offices. My friends and family try to be supportive, but they don't deal with this every day of their lives and they just don't understand. I feel like they get aggrevated with me for complaining about it all the time, so I really try not to. I started a journal and I write everything in there. Whatever I'm feeling, the intensity of my headaches, whatever I want to talk to somebody about... I'm glad I found this place so I have somewhere to 'vent' to people who understand what I'm going through. I'm to give up though. The doctors don't help me and they just make me feel bad for "bothering" them with my insignifigant problems. They aren't so insignifigant to me. *grin* I'd welcome anybody's comments. It would be nice to talk to someone with a similar situation as mine. Thank you!!!
--Heather Heather.Murnane@ramstein.af.mil
That's how they began and where they are now. I had never even heard of a migraine before. I didn't even know I had suffered from migraines for years after the first one... my neurologist told me what it was, however. Now, I've found my Mom has had them for life (she never knew what they were) and my Dad (deceased) may have also. I also chronic fatigue, which, believe it or not, is somewhat relieved by Vicodin (so much for the notion of "narcotic") and seems to have been permanently exacerbated by an anti-depressant, Rx'ed for the migraines. I'm sure that the inability to achieve relief from sex increases my stress level much, but I'm sure stress is only an exacerbator. Medication:
I have found Valium and Vicodin are the most effective and it stresses me when my neuro is forced to be politically correct about prescribing and is pressured into prescribing HARMFUL but "acceptable" drugs vs safe but "politcally incorrect" ones. I am not into recreational drugs... I simply cannot bear the pain and this is so frustrating. He had me try Inderal (propranalol, a beta-blocker) for a while... it obliterated my headaches, with one "small" problem... my heart behaved strangely... I then missed a day's dose and had tachycardia (sp?) at 145 beats per minute while stationary. That was my first ambulance ride. 20 Mg of valium and a half hour later, my pulse was 130. No more Inderal for me.
Anti-depressants have been ineffective and harmful in other ways to me... Serzone increased my fatigue tremendously and doesn't seem to relieve any pain.
I'm convinced I have an undiagnosed neurological condition that may go beyond peripheral neuropathy (suspected by my neuro of causing the sensory loss, though not visible on MRI).
With all the unknowns in medicine, it's clear that just because one hasn't found absolute diagnosis, one is not neccesarily experiencing merely psychogenic pain or other syndromes. Modern medicine knows little... it seems even more ironc that the time-tested medicines made from the opium poppy plant should be shunned, in favor of ineffective, harmful, non-time-tested ones. Politics dictate that you're better off dead or damaged than using substances our government uses as a political decoy. If doctor's had their way, they would probably be much more free about prescribing. Pardon my political commentary! :-) Thanks for listening.
The older I get, the worse my migrane pattern seems to get. As I approach the big 4-0, I wonder if building a tolerance to most medications while adding triggers is a part of the process? I also question if one don't develop some pseudo psychological/emotional illness patterns from the constant roller coaster of sick (lying flat in a dark quiet room) to trying to cram the daily activities of living into the hours or days between headaches?
It took quiet a few years for my headaches to become so frequent and incapaciting that I decided to see a doctor about my migranes. As a health professional, I was shocked at my first experience as patient going to a neurologist in the 80's. The neurologist told me point blank that doctor's do not like to treat patients with migranes because 1)most were drug seekers who constantly showed up in the emergency rooms trying to find a fix and 2)migranes were a common problem that just doesn't respond well to medical treatments. I did learn that I have more than one type of migrane (classic and cluster) pattern. I am very thankful that in the 90's Imitrex exists, and a page such as this one can be found.
I have tried Ergotrate, Belligrel (?spelling), Allergy shots and medicine, BetaBlockers, Reglan with Anaprox, Prozac, and Paxil. Ergotates worked but left me with blue ankles and feet. BetaBlockers worked initially, but eventually left me very depressed and with hypotension. Now the BetaBlockers along with Prozac, and Paxil actually make my migranes occur more frequently along with muscle pain and tension all over my body. Imitrex works, but for a while I was having headaches more frequently then it is recommended to use Imitrex over a 7 day period. (I have also tried braces for TMJ, aerobic exercise, physical therapy, craniosacral techniques, chiropratic treatment, relaxation, and healing touch.)
Recently, I was diagnosed with fibromylagia in addition to the migranes. I have also developed hypertension as my migranes left me more sedentary. I have found that in addition to my blood pressure medicine, low dose elavil, limiting food intake to no more than 2 servings/24 hours of any trigger foods, and the ingestion of Soy products seems to be helping. (By limiting triggers, I mean searching every source for any know substance that has ever remotely been related to migranes--not just the ones that I know will set me off.) I have actually experienced two 3 week periods being migrane free for the first time in 5-6 years. Not only have I had a little freedom from pain, but I am actually quiet cheerful. Cheerful enough that any former hint of depression has to relate to the chronicity of the situation and the frustration of not having a cure.
I am interested in learning more about Familial Hemiphoragic Migrane. I know that cerebral aneurism and migrane are not suspossed to connect; however, there are five grandchildren (out of 32) that have migranes--only two of us have not been diagnosed or died with an aneurism.
I have interestingly developed a further problem over the past two years. At some time between midmorning to early afternoon, I start with small hives and flush from my mid chest up to my face and ears. The small hives have gone from being seperate and distinct to being one big hive that appears like scalded or sunburned skin. You can watch the process work it's way up my sking. The flushed area keeps getting brighter and gives off much heat. It now burns me when it happens and feels very uncomfortable. (Initially, I didn't know this was happening but people would call my attention to it by wanting to know what was wrong.) Although I have enviromental allergies and I have food triggers for migranes, I have been tested and have no food allergies.
Please write if your experiences are similiar, or if you can suggest a rationale treatment. (I am not interested in quackery, I tried enough already. Do not contact me if you are hoping to make a sale.)
---VHayes 4Hayes@prodigy.net
What can I say except that I am in total awe of your web page. For years, like so many others, I have suffered with migraines. I am now 47. When I found your page, I couldn't wait to call my mom, now 78. She suffered through life with the devils of migraine pain, too. My heart went out to all who wrote in the "jounal", I felt a heavy pull on my heart as I read through the pages.
I have two sisters who have migraines also. Each one of us seem to have migraines with different degrees, lasting different lenghts, from hours to days. Most hormonal, I do believe. I have two daughters; ages 26 and 21, who have experienced some, but have escaped the frequent disability.
I get the cold sensation, chills, light sensitivity, smell sensitivity like tires, perfumes, plastics, even things which I come in contact with daily with at times just seem to be the begining, "whew" and withdrawal from the cause.
I have been taking Imitrex injections for about 2 years now, with a daily dose of Amitriptyline (25-50 mgs. a night, I self-medicate with the knowledge of a doctor) that has been keeping a good eye on me).
I have been through the gammet of pills, all mentioned; all tried. The battle goes on for all of us, but I have been very grateful that these past years there has been an awareness of our illness and that now the research is very much welcomed!
Thank you for this web page.
Hang in there everyone.
---Bonnie orion@northlandlink.com
