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http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl Daily Chat >> General Posts >> 20yr clusters. new to site http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1270994667 Message started by a.martin on Apr 11^th, 2010 at 10:04am

Title: 20yr clusters. new to site
Post by a.martin on Apr 11^th, 2010 at 10:04am

I've suffered from clusters for over 20 yrs. Now going thru about 10 tanks of O2 a day. Deperate for relief. Migraine meds do not work, narcotics do not work. (havn't taken any narcotics for over 5 yrs, it's a waste of money) Any guidence or advise would be greatly appreciated. Thank you!

Title: Re: 20yr clusters. new to site
Post by Marc on Apr 11^th, 2010 at 10:14am

Working with a competent doctor, you need to find a preventative that works for you. Common meds of this type include Verapamil and Lithium - together if needed.

Ask your Doc to try a steroid taper to give you immediate temporary relief while you find a good preventative medication.

What size tanks are you using?
What flow rate are you breathing at?

Have you tried things like chugging down a Redbull (or other "energy drink") that contains BOTH Taurine at 1,000-2,000mg and Caffine?

Which migraine type meds have failed to work for you?

Marc

Title: Re: 20yr clusters. new to site
Post by a.martin on Apr 11^th, 2010 at 10:20am

Been on lithium, topomax, verapimil (sp), steriod treatments. no relief! using both a H tank and E tank @ 15 liters per min. Chesly MI put me on 20 different meds to try to find relief. NO HELP!!! Only on the O2 now. Tried all the migraine meds. but migraine meds give me chest pains.

Title: Re: 20yr clusters. new to site
Post by Marc on Apr 11^th, 2010 at 10:36am

Are you working a doctor to find some help? There are other approaches, some quite different.......

Look around here a bit and ask questions - chances are high that you find something you have not tried/considered.

Marc

Title: Re: 20yr clusters. new to site
Post by Linda_Howell on Apr 11^th, 2010 at 10:51am

10 tanks of 02 per day??? Really?

Title: Re: 20yr clusters. new to site
Post by Brew on Apr 11^th, 2010 at 10:59am

a.martin wrote on Apr 11^th, 2010 at 10:20am:

Tried all the migraine meds. but migraine meds give me chest pains.

You're going to have to be a little more forthcoming if you want assistance. Marc asked you specifically, which migraine meds?

Title: Re: 20yr clusters. new to site
Post by Skyhawk5 on Apr 12^th, 2010 at 12:15am

Are you talking about Chelsea, Michigan? Part of MHNI?

You may want to look into a higher flow O2 setup with the O2pti mask available on this site, this mask is made just for CH and has a much larger bag than a standard NON-rebreather.

Don

Title: Re: 20yr clusters. new to site
Post by wimsey1 on Apr 12^th, 2010 at 7:53am

I've been 23 years with clusters and the last 3 years chronic. I have made an appointment with one of the headache clinics in Boston who specialize in clusters. They are part of the Harvard Med School. Perhaps there is one where you live? I have tried most Rxs and none have worked on me, either, except for the high flow O2 and the Optimask. I use a demand flow valve I that delivers up to 60 lpm. Recently I have added B12 complex and melatonin daily and that actually seems to help. I agree you need to be more specific in what you have tried if you want info on what works for others.