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Topic: My Shortest CH Episode Ever (Read 463 times) |
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BikerBob
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My Shortest CH Episode Ever
« on: Feb 25th, 2005, 7:00pm » |
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I am an episodic clusterhead. I've been through 15 episodes in the last 30 years. Until this most recent episode they have gone on for 3-6 months each. This one ended in just under 2 months. Verapamil 600mg/day plus Melatonin 6mg/day did it.
After 4 years of being out of cycle this one started in mid-December. I haven't had any pain or shadows for 3 weeks now. I had a few beers a few days ago. Last night I celebrated by drinking a bottle of fine Cabernet Savignon.
When the episode started in mid-December, I called my "internal medicine" doctor (not a neuro) who gives me whatever I want. I knew from previous episodes to get Imitrex and O2 ASAP. I left a message saying I need a script for Imitrex and O2 ASAP. Without even talking to him his assistant called in a script to my pharmacy the same day for trex statdose injections and tablets. They didn't know how to do a script for O2 and never heard of it so I had to go see him the next day for a 5 minute appt. I told him it's CH not migraines and I NEED a script for O2 15lpm H tank non-rebreather mask and I need it NOW. He simply wrote a script saying "O2 for migraines". I found in the Yellow Pages under "oxygen" an in-home med supplier that delivered a H tank with 15lpm reg and non-rebreather mask in a couple days; all for $64/month + $25 delivery charge + $25 for H tank refills (H tanks are 10 times E tanks). The O2 supplier asked for insurance info and I just said this is so cheap I'll pay cash and leave my insurance co. out of it.
January was hell. I used up 2 H tanks in less than a month, aborting 4-6 hits per evening/night at 12lpm for 15 minutes. The 1am hits were too strong for 15 min of O2 at 12lpm so I had to use trex. When I used the trex tip on the left at 1am I got more hits at 3am and 5am. A few nights when I desperately needed a good night's sleep I took a 100mg trex tablet at midnight as a preventative for 8-12 hours and that worked.
I saw a new neuro on January 12 (my old one had retired since my last cycle) to talk preventatives and ending this cycle. At first I couldn't get an appt with a neuro for six weeks. With a referral from my friendly "internal medicine" guy and insisting it was very urgent, the neuro suddenly had an opening to see me the next day. He was clueless about CH. If it wasn't for the valuable info on this site he would have had me on Topomax. I insisted on verapamil, high dose. I had used verapamil during a few previous cycles but it didn't work because the dose was too low. I didn't realize that until I read the messages on this site. He wrote a script for:
Verapamil 120mg ER Capsules #100 (with 3 refills)
Take 1 capsule twice daily X 3 days
2 capsules am & 1 capsule pm X 3 days
2 capsules twice daily X 2 weeks (I cheated by a week on the 2 weeks)
then 2 capsules am & 3 capsules pm
He said watch your BP, this can make it dangerously low. I have a history of high BP and the 600mg per day verap only brought it down to 130/70.
I also started 9mg Melatonin before bed at that time. It made me exhausted in the mornings so I cut it down to 6mg the third day.
A week after I got up to 600mg/day verap with 6mg melatonin the CHs stopped. I've had no CHs or shadows during the past 3 weeks. Now I'm tapering down from 600mg/day verap by 120mg each week until I get down to 240mg/day unless a) any signs of CH return, or b) BP gets too high. I'll keep taking the 6mg Melatonin.
Thank you all for this wonderful community of fellow clusterheads. A donation is on the way. My heart goes out to those of you who are chronic and the episodics now in cycle, especially those of you who can't use triptans or have BP too low to use high doses of verap.
I don't understand why more of you don't just go for the alternative therapy. Here's the link to the easy way to do it:
http://www.clusterbusters.com/mycobag.htm
I think I'll stick around this message board. I only wish I could help you as much as you have helped me...
PF wishes to you all. I hope and pray that you find something that works for you soon.
Bob
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don
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Re: My Shortest CH Episode Ever
« Reply #1 on: Feb 25th, 2005, 7:32pm » |
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Congratulations!
You have posted a powerful message. That being you need to educate yourself and then advocate for yourself. Nice job.
You earned your PF time.
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Kevin_M
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Re: My Shortest CH Episode Ever
« Reply #2 on: Feb 25th, 2005, 9:26pm » |
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on Feb 25th, 2005, 7:00pm, BikerBob wrote:Verapamil 600mg/day plus Melatonin 6mg/day
I had used verapamil during a few previous cycles but it didn't work because the dose was too low. I didn't realize that until I read the messages on this site.
I think I'll stick around this message board. I only wish I could help you as much as you have helped me...
PF wishes to you all. I hope and pray that you find something that works for you soon. |
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Exact same mistake I did too. Went to 600mg this time finally and... good results; first time ever with seeing a new neuro after years with my internal medicine doc and his referral a previous neuro that defined them for me but couldn't treat them. Lived on aborts only from the internal medicine doc. Big dif!
Great post Bob and good to hear!
Kevin M
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Jeepgun
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Re: My Shortest CH Episode Ever
« Reply #3 on: Feb 26th, 2005, 4:08pm » |
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Way to go, Bob! Nice to hear of one more of our ranks escaping the clutches of the beast. Enjoy!!
-Frank
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Todd
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Re: My Shortest CH Episode Ever
« Reply #4 on: Mar 5th, 2005, 5:06pm » |
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Thanks for some help in how to get the oxygen. I've been through here and can find the "list" but wasn't sure where to go.
I'm ending this cycle (my 5th) but damn it i'm going to be better prepared for the next one.
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Belle
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Re: My Shortest CH Episode Ever
« Reply #5 on: Mar 6th, 2005, 12:57am » |
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I just finished my shortest one ever too. Got right in there with the Verapamil. I'm just finishing now, it's been about a month and a half. Thank goodness for medicine and their alternatives.
Belle
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Take the time to stop and smell the roses!
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Langa
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Re: My Shortest CH Episode Ever
« Reply #6 on: Mar 7th, 2005, 8:14am » |
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Great post Bob and very happy you're out of cycle! 
Langa
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