I've suffered with mild migraines (but nonetheless annoying) for years . I'm 41. I had also been curious about brief, 5 to 10 second, "zoning" out spells I had experienced for years that were becoming more and more frequent (1/yr to 1+/day). I finally went to see a neurosurgeon about both. An MRI revealed a clustered area of blood vessels deep in my brain on the left side. The MD diagnosed this as a cavernous malformation. This I had confirmed at Emory and Mass. Gen.. My "spells" or mild epileptic seizures had been caused by this area. I was put on Tegretol, XR 200mg and they stopped!! The headaches, however, I was told, had nothing to do with the cavernous malformation and so the "classic" search for remedies and relief began. I've taken many pills over the last 3 years and like may others OTC medicines don't help me. I've had Fioricet #3 perscribed now for about 1 1/2 yrs. to take at the onset of a "bad one" (every 10 days or so) and although it worked very well with my migraines at first their
effect seemed to lessen and I found myself taking more to achieve the same level of relief. Then, of course, the rebounds, and I'd take one. Then that tiny bit of pain that I'd convinced myself could be a really bad one starting...and I'd take another. And so on. Of course, my concern is, "Am I doing myself more harm than good?". "Am I becoming addicted?". My doctor prescribes 20/mo to handle the 3 migraines I get about every 10 days. Sometimes I use up my "allotment" before the final headache and I just have to tough it out. Those that are/or have experienced this please contact me.
George <gjayf@concentric.net>
Covington, Ga USA - Sat Jun 20 17:54:12 1998
Hello to my fellow migraine suffers! I just read through a few histories and thought it might be helpful for a few of you to know what I've experienced. Along with migraines, I have an "unusual" seizure type disorder. Some neuro's call it focal point or absent seizures. One thing they all agree on is that they are difficult to diagose, (some have actually not even believed that I have them). I usually feel like I am daydreaming, big time! and then I don't remember much after that, when I do start to gain some consciousness I may not be able to respond, or to use my verbal skills properly. Since then, I have been told that they are pseudo seizures and are seen with patients who have migraines as well. I have been on klonopin for over 10 yrs for these seizures and that seems to work the best. If anyone wants to know more about my "seizures", please feel free to e-mail me. I don't know why, but again they are treated by much of the medical profession as "being in my head". What else is new?
I have also recently, 6 mos, been having stranger migraine presentations. They are not just the noise, light sensitivity, but also I loose feeling in one side of my body and get slurred speech. This really frightens me since I am high risk for strokes. They tell me this can happen with migraines, but after 17 yrs, why all of a sudden would it start happening? If anyone has similar experience, please let me know? You are all in my daily prayers.
Sincerely, Maureen Tashjian
Maureen Lyons Tashjian <MLTashjian@Juno.com>
Langhorne, PA USA - Sat Jun 20 17:48:22 1998
Hi fellow Migrainerurs...It's been a little while since I wrote on the Journal, so I thought I would let you all know that I am still here and still suffering. If my letter sounds a little bit like I am rambling, it's because I have another headache today and I took some Stadol a little while ago. It makes me feel weird and drowsy...so if I drop off, you all will understand. I have had so many letters from those that want to help me with trying to lobby for drug reforms...those reforms for helping those of us with chronic intractable migraine pain...so that we don't have to feel like drug addicts when we have to go to the ER. Apparently there is a bill to go before congress that has to do with Chronic Pain patients and their pain medications...to punish doctors that DO NOT treat pain patients effectivly. I think that it will allow doctors to give us the medications that work for us without them having to worry about punishment. There are 3 states that have this type of law, we just need the other 47 states to do the same. I just reread this and it sounds as if I need to go get some sleep. If you want to help, e-mail me and I will give you a couple of websites where more information can be gathered. Thanks, Linda
Linda <llong@terraworld.net>
KS USA - Sat Jun 20 16:31:23 1998
I AM 23 YEARS OLD. I HAVE SUFFERED FROM CLUSTER MIGRAINES SINCE I WAS A JUNIOR IN HIGH SCHOOL. I GET A 2 WEEK SESSION EVERY 1 TO THREE YEARS. IN THE 2 WEEK SESSION, I WILL GET 1 THEN I WILL GO ABOUT 8 DAYS WITHOUT ONE THEN ANOTHER ONE THEN 4 DAYS WITHOUT ONE THEN ANOTHER ONE THEN TWO DAYS OFF THEN 1 DAY THEN 2 A DAY, THEN THEY GO AWAY FOR ANOTHER YEAR TO THREE YEARS. I STARTED USING CAFERGOT AT FIRST BUT WHEN IMITREX CAME OUT, I STARTED USING THE 5 MG SUBCUTANEOUS INJECTIONS. IT WORKS VERY WELL. WITHIN 10 MINUTES THE HEADACHE IS TOTALLY GONE. THE INJECTION DOES MAKE MY MUSCLES FEEL WEAK AND I DO EXPERIENCE A BURNING SENSATION IN THE HEAD AND TIGHTNESS OF THE CHEST. HOWEVER, THEY ARE WONDERFUL TO CONTROL THE HEADACHE. THE HEADACHES DO SEEM TO BE TRIGGERED BY STRESS ONCE A CLUSTER HAS STARTED, BUT WHEN I'M NOT IN A CLUSTER, STRESS DOESN'T SEEM TO BE A FACTOR. I DON'T DRINK ALCHOHOL OR USE DRUGS, BUT I DO DRINK CAFFEINATED BEVERAGES 2-3 TIMES A WEEK BUT DOESN'T SEEM TO AFFECT THE HEADACHES ONE WAY OR THE OTHER. ALSO THE HEADACHES SEEM TO COME AT THE SAME TIME OF DAY DURING A CLUSTER. AT NIGHT, I WILL GET THEM AND THEY WILL WAKE ME UP. THE CLUSTER ACTUALLY SEEMS TO START WITH ABOUT A TWO WEEK PERIOD WHERE I AM JUST DITZY AND FORGETFUL. THEN I GET THE HEADACHES. I DONT GET AN AURA, BUT MY VISION IS DIFFERENT, THE PAIN IS ALWAYS BEHIND MY LEFT EYE AND STARTS OFF MILD BUT PEAKS AND EBBS FOR ABOUT A HALF HOUR AT THE START OF THE CLUSTER TO ABOUT TWO HOURS AT THE END OF THE CLUSTER. ALSO THE HEADACHES SEEM TO BE LESS INTENSE AT THE END OF THE CLUSTER. I'VE HAD MRI'S AND CT SCANS THAT CAME OUT NORMAL. I'VE HAD HEADACHES WHEN I'VE BEEN IN FOOD PHYSICAL SHAPE AND POOR PHYSICAL SHAPE. IN STRESSFUL TIMES AND IN NON STRESSFUL TIMES. A DARK QUIET ROOM WITH NO ONE AROUND SEEMS TO HELP THE MOST IF I DON'T HAVE AN IMITREX INJECTION HANDY. I FEEL LUCKY BECAUSE I GET THE CLUSTERS SO FAR APART, BUT WHEN I GET THEM AS MOST OF YOU KNOW A GUN SEEMS LIKE THE BEST ALTERNATIVE. HOWEVER, I BELIEVE ON ENDURING TO THE END. ANYWAY, ENOUGH RAMBLING. JUST THOUGHT THAT MY DESCRIPTION OF SYMPTOMS AND THE MEDICATION THAT WORKS WELL FOR ME MIGHT HELP SOMEONE ELSE WITH SIMILAR SYMPTOMS. IF YOU HAVE ANY QUESTIONS YOU CAN EMAIL ME AT RGMACKAY@WORLDNET.ATT.NET
MARK PALMER <RGMACKAY@WORLDNET.ATT.NET>
RIVERTON , UT USA - Sat Jun 20 0:04:57 1998
I am a 32 yr old mother of 2 small boys. This is my first time online, and I am relieved to see that I am not alone in my suffering. I have had migraines for almost 16 years, my accompanying symptoms continue to change, but, the excruciating pain remains the same. Over the years, I have experienced vomiting, sensitivity to light, sound, scents/odors, numbness, burning sensation in my nasal passage, blackouts (body goes limp) and as of 9/97 possibly seizures (body was stiff, hands balled, unconscious). In the beginning my migraines were monthly, lasting a day or 2. Since, 9/97 I have had at least a migraine a week and some type of head pain or headache daily. I live my life around my headaches. I've taken several different meds with no success, I do find some relief from the pain when taking Fiorinal w/Codeine, not always, just sometimes. I'm currently seeing a neurologist, she's great, we're trying combo meds, hoping to find something that works, as she thinks my blackouts are seizures. My EEG showed scar tissue, right side, which is why she is diagnosing seizures. My MRI was normal. We don't know if migraines are causing the blackouts/seizures or if the blackouts/seizures are causing the migraines. I just want to be headache & pain free, to take care of myself & my family. I wish the same for all of you and my thanks for this opportunity to share with you. Good Luck...Gladys Please feel free to email me w/ comments/suggestions GMJenkins@aol.com
Gladys <GMJenkins@aol.com>
St. Louis, MO USA - Thu Jun 18 20:00:01 1998
I am at a desperation point. I am in my 20's and have had migraines all of my life, however, recently they have been constant. I have tried several medications, physical therapy and yoga. My doctor says they are stress/work related. I get them whether I am stressed out or not. I am wondering if anyone knows of a good doctor or clinic in the connecticut area. The various medications that I have tried only make me sick to my stomach. Please help!!!
nicole martel <kpmartel@aol.com>
middletown, ct USA - Thu Jun 18 17:05:48 1998
Hello fellow migraineurs! Well, I just now am in the last phase of my migraine. You know, the "drugged" and lethargic phase? I really hate these darn migraines, I must say! I wish docs and ER's would be more understanding, but we know that is a wish that will NEVER come true, unfortunately. Docs take an oath when they receive their license to practice...one, to preserve life and two, to alleviate pain that their patient's are having. I sure know of a lot of docs whom have broken number two in the oath. I am sure you all can relate to what I am saying. I find ER docs stereotype us migraine patients and put a label on us as "drugseekers." This is very upsetting to me, as I am sure it is to you as well. Let me give you an example....yesterday I had oral surgery on my tooth to have it extracted and I was in a considerable amount of pain. The oral surgeon only gave me Darvocet.....big whew! That didn't even phase my pain whatsoever! So, I waited a few hours and proceeded to go to the ER. Guess what??!! Everyone there was soooo nice and sympathetic because they could actually SEE what was causing my pain. They saw this big hole where my tooth was and stiches in it and of course, blood oozing out. So, naturally they acted very rapidly in treating me with 75mg of Demerol and 50mg of Phenergen! Can you believe it?! Plus, the ER doc gave me a script for Demerol and Phenergen (Mepergen) tablets...8 of them! Want to know something else?? THIS is the SAME doc that treated my headache a month ago and said he would only give me Nubain and nothing stronger for a "headache." The point I am trying to make here is my trip to the ER yest, for my pain due to my oral surgery was treated way different than my migraine pain. I guess these docs think that if it cannot be diagnosed thru tests or they can't actually see it, they will NOT believe the excruitiating pain we are enduring! This is NOT fair and we need to work together to change the law regarding intractable pain! Has anyone else had a similar story as mine? I would welcome any/all replies. Please email me. Thanks! May everyone have a pain free life....as painfree as possible! Take care and be well!!!!!
~Jana~
JTROUTEN@aol.com
Jana <JTROUTEN@aol.com>
Atlanta, GA USA - Thu Jun 18 16:57:31 1998
