---Christi Lux <lux@erinet.com>
Franklin, OH USA -

i wish i had come to this site before now. i have been a migraine sufferer for 48 of my 58 years. i have been to the headache center in stamford conn. and was under the care of dr. sheftel. after years of my doctor trying everything for me i was able to get a canceled appt. by someone and was able to get right in. i was able to get imitrex injections out of canada (by dr. sheftel faxing up a rx to a pharmacy) before became available in the states. i can remember back in 1954 my mother took me to a doctor and he told her it was all in my head! (she actually paid him for the visit!) well i could go on and on about the years from when i started having migraines but most people have said what i could have but i will say this i am past the big M so the change has not made a difference in the amount or how bad the migraines are. i have a 73 year old friend in canada that still has migraines and also a 89 year old friend. may i offer each and every one of the folks here a ((BIG HUG)) and quote a very special friend of mine "you are not alone" ronnie

---ronnie <rnvn@webtv.net>
waterford, ct USA -

Hi, its Janet again, I guess either I have finally totally lost it or I have just heard one horror story to many cause I have decided to go public with my horror story. Im going to try to get in contact with Oprha and tell my story on her show If anyone can help I bet she can!!! Any of you people out there with me on this ? If so please email me. Janet

---Janet <stella@verdenet.com>
cottonwood, Az. USA -

Do you consider migraines a disability protected under the ADA? Why? I am asking because I am an advocate for people with disabilities. One of our consumers is about to be terminated because she misses work because of the headaches. My wife suffers from them also and she has been hasseled at work. I would like to know if you or someone you know has been discriminated against by JC Penney or anyother employer because you have migraines and what you did about it if anything. This is very important for possible action later. You can write me Roger Harsh 1910 Haskell Ave. Lawrence, KS 66046. I need your stories or others stories. Thank you. To all you contact me I will keep you updated on this issue if you give me an address.

---Roger Harsh <indy@advsunflower.com>
Lawrence, Ks USA -

I have been suffering from chronic daily headaches for over 7 years. I am 43, happily married and have 2 great teen-age girls. I am not working. I feel my stress level is minimal. I have taken every drug, some work for awhile, then the headaches return. I've had many tests. MRI of my brain is neg. MRI of my neck showed a herniated disc, between C5-6. I think probably from 2 previous rear-end car accidents, over 8&13 years ago. I have no pain or discomfort from my neck. My Dr. thinks that is unrelated. Due to symptoms on a neurological exam, my Dr. did a spinal tap, which showed my spinal fluid pressure elevated fairly high. I was actually excited to think this could be the cause of my headaches, as there are several solutions. He first put me on high doses of 2 different diuretics. I could only tolerate that for a couple weeks, the side effects were horrible. Another spinal tap, on the diuretics, showed no more ICP, yet I was still having the headaches. I went completely off all medications, he did another tap, and that showed only slight ICP. He had no explaination at all, why it was elevated, and now isn't. I feel like I am back at the beginning again. He wants to try other drugs. I don't. I'm sick and tired of them! Don't like the side effects of anti-depressants. Don't like the weight gain of other drugs. I have tried massage therapy, physical therapy using electro stimulas of the muscles, been to the chiropractor. I take Vicodon 7.5 on a daily basis, 2-6 pills/day. Maybe one day a week without any pills. I don't like it, but after reading so many other letters, maybe its not so bad. If it takes care of my headaches, which it usually does, then maybe I shouldn't worry about it. My Dr. doesn't seem concerned. I do think I am building up a tolerance to them, so then what? I have 2 more things to try, one is acupuncture. Anyone had success with that? I have an appt. this week. Also, I am getting my hormones checked out. I had a hyst over 10 years ago, and am now having lots of the pre-menapause symptoms. I am amazed at all the stories I have read here, and if nothing else, it makes me realize I am far from alone with this problem. I thought I was going to a good Dr., but now I am starting to wonder. I don't like Dr. hopping. I am so tired of all this, and am not a complaining person. I usually live each day with headaches and don't complain. I don't know what else to do. I am keeping my fingers crossed about the acupuncture! I feel it is my last resort. I am interested in hearing from anyone with a similar situation. Please e-mail me at: arothfus@iea.com

---D.J.Rothfus <arothfus@iea.com>
Spokane, WA USA -

November 13, 1996, while at work (auto body repair) my husband describes what felt like and sounded like a 22 shell going off in his head. he stumbled and sat down when he could he took a handful of Advil and resumed work with a terrific headache. Later that day he developed what he calls stroke like symptoms - teeth clenching, eye not stay open (left side) face quiver, inability to focus. He called family doctor who had him come in the next day and did CT Scan and Spinal puncture. They say normal (but his cerebral spinal fluid proteins scale normal is 15-45 -- his proteins are 57 -- 12 points over a 30 point scale!!) MD felt migraine and shoud see neurologist within few weeks. He returned to work and the next day (friday) he had a similar, less intense episode. He returned to MD who moved appoint ment with neurologist to Monday. The weekend saw symptoms continue - hyper sensitive to light and sound. fitful "sleep" when he did get up needed wall to walk, couldn';t open left eye, couldn't understand speach, words slurred -- yes, looking back I kick myself for not putting him in the trunk and taking him to emergency room!! - By Monday he was still out of it - He had an appointment with his chiropractoir (has been chiropractoring on and off for the 15 years we have been together) who pulled me aside and said I need to get him in ASAP! eyes not track, nonsense words. Neurologist appointment follows - his personality became very sullen and withdrawn - almost angry demeanor - while at neurologist, didn't answer direct questions, it seemes to me he was concentrating so on controling the pain he was in a zone! The nuerologist turned to me for much of what I saw, He had developed what looked like a drip of blood on his left eyelid. The neurologist swa all the body droop, eye track, slurred speach, etc and put in hospital to expedite further tests - expecting to find tumor, clot or anneurysm. The next day ( we're on Tuesday now) they did MRI/MRA, EEG and arteriograph. All came back normal with theonly abnormality stated was a very petite right veterbral artery and very dominant left - but this can be normal it states. I alos note his creatinine was low and his MPV in blood work up was high, and the previously mentioned CSF proteins. They released him with the same headacxhe he came in with on Wednesday! Took to second neurologist who said all the bases were convered, and gave article on thunderclap headache. He chose to return to first neurologist for follow up. This included indomethicin and advils or tylenol as releif. They episodes of sudden left eye pain continued even when watching TV. He never completely lost the head pain - always localized behind left eye - some days pressure, some days whole left side, some days like ice pick that someone jams around every once in a while - some days can feel every muscle and nerve in the eys - some days like a piece of spaghetti behind eye. This continues today 15 months later. The first neurologist released and when pain persisted, I talked him into going to second neurologist. That one followed until October. During this time had gonme on wellbutrine as affect was flat - still lack of motivation, (but working) lack of attentiveness, still sullen angry demeanor even when not angry, still tired all the time. The second neruologist released in October stating nothing more he could do , but maintain contact with psych to monitor meds. That is just what psych does - come in how you doing, listen offerd no comment and send on the way for another 6 weeks (now 3 months between visits) Things escalated inOctober - the little loss of memory tings I began to notice increased to always needing to write notes, always forgeting to mail letters of such...it got worse! he forgot pepole that had been to our house, would stop in the middle of a conversationa dn forget what yuo were talking about - not the train of thougfh but completely what anyone was talking about - he forgot things like [papers to insurance agent, parents coming 150 miles to visit for supper, etc. Come january he reports he does thjings like put silverware in wrong drawer upside down, or weld on parts at work backward (useless) or play simple card game and jold really simple cards anyone would play - angry demeanor continues, wife and three children who adore him walk on egg shells often...It got so he was not sure what else to do so he moved out. In ,mean time family is calling all over nation to find specialist - he has aged 10 year this year, he now report he has sudden crushiing episodes of left eye pain that leave pretty quickly, but still has some form of pain daily - also eyes not track, loose focus when tired and can't get refocused, eyes jitter, wife notes increase in night jerks and night headholding moaning in pain. his breathing seems much more labored - shallw than I am used to. etc He states some days he cann't hold his head up and some days it feels like someone grabbed head at neck and forces head into shoulders. Wife noted when you watch him, his head bobs around like on a rubber base - eve when reading. The memory and skills really bother him as he knows it is happening - the personality change also is distressing to all of us. he was the gut all the neices and nephews flocked to - now they don't come by him withoutr prompti ng. Note he has been through EMG tests as his whole left arm used to fall asleep - and has fingers no each hand that 'loose blood" and need to shake and warm for blood to return They gave possible renaud's or from his power tools so he lives woith it. He may have carpal tunnel, but he has chiropractor adjust when it bother too much, he lives wit it, he has had numerous eye injuries (welding burns when there is a scratch in welding mask, or metal fragments in eye) as well as at leats two head hits that either gave stitches of concussion - togerther with numerous other injuries like broken ankle, wrists fall off fraem mechine, etc, etc, etc. I see a lot of little pieces - but remeber he has been told by 2 neurologists there is nothing wrong it is all in your head. he agreed to see doctor Bartleson at Mayo Cli8nic in Rochester - what a disappointment - he asked what we wanted after not even reading over the records had the MRI re-run, bolld work to rule out lime disease and had a MD eye specialist look at eye. Eye was normal and should be no reason eye pain, blood was normal, no lime disease, MRI was normal but they couldn't find right veterbral artery but it was petite anyway so they sent us home sugesting maybe a neuro-psych and full psychiactric. Maybe begin neurotonin to decrease the mini episodes. But sent home with no real plan , no prescription, not answers! I have himn agreeing to go once more - to the Unoversity of Wisconsin Hospitals headache pain clinic. They weere referred by the first neurologist we were referred to. That one read the record and suggested this may give better plan, so I have one shot -- any ideas, suggestions, question to ask or other places to post would be very appreciated. I love my husband, but know he cannot keep having his family walk on egg shells when he is around - he doesn't feel there is a choice if we don't get an answer or some relief. Some ideas I have is CSF fluid, neck or back not just head, allergy developed to chemicals he deals with daily (although week long trip to Disney did not relieve) etc...

---Jackie <jcschoen@northnet.net>
Oshkosh, WI USA -