Posted by Samantha Smith (205.188.199.158) on October 13, 2001 at 13:34:55:
Hello everybody!!! Thank you all for constructing such an incredible site. I no longer feel alone. I am 30 years old and I live in Vermont. I have had cluster headaches for the past 14 months. At first they started off as episodic (with a whole week of remission) but as the months wore on the episodes became longer and the pain free times became shorter.I now have been dealing with chronic cluster migraines since probably for the past 6 months.
I went to Spaulding Hospital to see a headache/pain management specialist on October 4, 2001 in Boston and he says I have "atypical cluster headaches" according to IHS standards. The headaches are "atypical" because I get them on both sides of my face/head and because I have had bouts of sever pain that have lasted as long as 8 days in a row.
My symptoms are earaches, ice picks, flushed/hot face, runny nose, watering bloodshot eye, swelling of affected side, burning on various parts of skull of affected side, blurry vision with affected eye....you get the point.
In terms of medications I have tried predisone, lidocaine nasal spray, lithium, veraprimil, birth control pills, imitrex, oxygen, Migranal, toradol, OxyContin, Stadol,alternative medicine, etc. etc. etc.
The best combo is what I'm taking now Fentanyl Patch (75mcg) and Ultram (400 mg). I take Alleve for breakthough pain. I drink tons of water and meditate and pray at least once per day.
A few months ago I went thru a 10 week pain management course and learn about the chronic pain processs, how to deal with flare ups, how to ask for help, stress management, etc. That course basically saved my live because sometimes no matter how much mediccation I take it doesn't work.
I eat a fairly healthy diet with rice, soy milk, fresh fruit, etc.Yes, I will pay more for organic. :)
From age 13 until 29 I lived with chronic classical migraines and they pretty much went away once the chronic cluster migraines came and stayed.
I am on Social Security Disability for Post Traumatic Stress Syndrome(very long story) and cluster headaches.
When I feel okay I like to write poems, play with my dog, watch my fish, go to church and Bible study (no, I'm not pushy about religion), arts and crafts, etc.
I spent many years in the seafood business before I became crazy and sick. I love fish and the fish business.
Please be patient with me I'm not that savvy with computer lingo. I did read ettiquitte rules but due to the potency of the meds I take I forget easily and get confused quite often. Thanks again for having such an amazing site. I hope to share useful info and to be a support to others. (Not sure if I should do this but I'll leave my email address: knottygirrrl@yahoo.com) Samantha