Posted by Christina Galli (216.192.86.22) on July 24, 1999 at 17:16:10:
Hi all, warning - this is going to be long.
I'm warn out, upset, and desperate for answers. thanks for the patience.
I've had migraines for 23 years, chronic classical/cluster component migraines and chronic paraxysmal hemicrania continua for 3 1/2 years now and clusters for 2 (in sept.). My migraines have really never responded to preventatives. Only a couple of times for a couple of weeks. Right now I'm on Veramapil 2 240mg sr, Indicin 150mg (for my paroxysmal hemicrania continua which does help) and depakote 2 250mg, I'm supposed to take 3 but I'm a little nervous about the side effects. It seems like many of the rare side effects affects me now. This combo isn't helping my cluster either. The only thing that helped my cluster was Histamine desensitization therapy last July at the Diamond Clinic. It helped for 9 months. Then in February, they started again, but only lasted one week. I think the increase in Veramapil helped. Up until then my Cluster were a nothing compared to some of your stories and mine presently speaking. I only got 1 a day, sometimes even skipped a day and it would last anywhere from 15 to 45 min. with that after headache (I call it the aftermath) for an hour or so. Well in April they started again, and I was very concerned because I was getting married in May and they were increasing in severity and frequency. So I went in for another Histamine Treatment. This time it worked for only 12 days. I had 3 clusters the day before my wedding and 4 the day of. Stadol NS is what got me throught it! I rarely took pain meds. Only on occasion or if was an emergency like I was on the Empire State building when a Cluster hit, so I took Stadol. But I had to take to get through my honeymoon. On our honeymoon, we took a flight to Puerto Rico from St. Thomas and the flight was so awful. The seaplane to St. Croix was smoother and quieter. I have trouble flying anyway, but this was so bad. I was in Seat 5A next to the perpellar, and my whole body felt the vibration, I could feel the inside of my head shaking and it brought on one of the worst clusters I had had yet. I truly believe that flight changed everything. I have been so bad eversince and that was June 20. I have now had any where from 5 -10 clusters a day. Sometimes the Oxygen works, sometimes not. I feel so sick from all the pain med. My Dr. in away, and the other Dr.s in chicago won't give me anymore stadol not to even fly out there instead the offer me Activan which doesn't do anything. Nubain doesn't do anything. Soma nothing. During this cluster period a couple of strange things have happened. 2 weeks ago I started to have what my family thought were seizures during my cluster attacks. Apparently my eyes were rolling in the back of my head or appearing to pop out of head, I was coming in and out, losing and regaining consciencenous , not able to speak at times, but the worst was my air was being cut off and the position of my head each time was straight back and it was as if my head and my neck and jaw muscles were "locked up". After 3 emergency room visits (1 treating me for possible seizure, 2 treating me for headache they didn't even know or understand what a Cluster was, a family doctor visit and several phone calls to the Diamond Clinic and noone having any answers, I went to a new family doctor who witnesses for herself called a Neurologist, had him meet me at the Emergency room immediately and diagnoses as some Occular something Crisis. It's some kind of spasm type of reaction to a drug interation and the Drug interaction was the Phernergan that I was taking for the nausea and also to know me out and the Ativan they were giving me plus the Decadron they gave me the week before to try to break this cycle didn't help either. So I had to stop all ativan and phenergan and start Benedryl for a week and just to be safe and rule out any seizure activity the neurologist ran an EEG which was perfectly negative. After my husband telling the Clinic over and over again that we could not possibly fly out to Chicago for Histamine therapy, we asked if they would consider working with this Neurologist out here and guide him through it (being he was knowledgeable wonderful and local, what an absolute rare find!!!!) After much reluctance, they agreed but unfortunately he didn't. He felt to uncomfortable. Probably worried about possible lawsuit if something goes wrong, so sad. Well those attacks have dissapated but the cluster go on. And now for the past week, Yeah a new and interesting headache. One that I have only had once before, the last day I was in the hospital this last time and they couldn't fix me up or tell me what it was and lasted at the same intensity without a break even for a minute for 12 hours, and it was worst then a cluster, if you can believe it. This headache is all over….when I mean all over, I mean all over. The back of my head, the top, the side, the front, my entire face not just the right half, both my ears, my teeth (which isn't totally unusual), but just every millimeter and sometime even my neck and my upper back. DOES ANYONE KNOW WHAT THIS IS? IS THIS A CLUSTER? IS THIS A HEMIPALEGIC MIGRAINE? NOTHING WORKS…NOTHING. STADOL ONLY HELPS A LITTLE FOR AN HOUR OR SO AND THEN IT'S FULL FORCE AGAIN AND I CAN'T TAKE THE STADOL AGAIN AND IF A DO I THROW UP, WHICH REALLY MAKES THINGS WORSE, BECAUSE I'M ALREADY NAUSEOUS TO BEGIN WITH. SOMETIMES ZOFRAN DOESN'T EVEN TAKE THE NAUSEA AWAY. PLEASE PLEASE IF ANYONE HAS ANY ANSWERS. THE WELL REKNOWN, SUPPOSED TO BE THE BEST IN THE COUNTRY DIAMOND CLINIC DOESN'T HAVE ANSWERS, CAN'T HELP ME, I THOUGHT MAYBE ONE OF YOU CAN. I can't wait for my Dr. to get back (Dr. Merle) I know she may know what this is, but until then I can't take anymore. If anyone has any suggestions either, it would be greatly appreciated. I am going to wait for Dr. Merle but if she can't help me, I'm thinking about trying the Montifiore Clinic (is that in the Bronx?) or alternative medicine like Hydrogen Peroxide baths and herbal medicines - any thoughts or experiences on this?
I'm sorry for babling, lucky for all of you, one is coming on…gotta go. If for nothing else thanks for listening.
My heart goes out to all of you…Tina P.S. Can't spell check now. Sorry