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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> new guy-experienced sufferer
        
(Message started by: burnt-toast on Jun 4^th, 2005, 12:02pm)

Title: new guy-experienced sufferer
Post by burnt-toast on Jun 4^th, 2005, 12:02pm

I've frequently poked my head into this site over the years but never posted. Don't feel I have any other choice at this point. Could use some input from anyone who has found relief. I'll be brief and to the point.

Cluster sufferer - 10yrs., diagnosed - 8yrs., type - mostly chronic/3 - 3mos. remissions in 10 yrs., 3 to 5 attacks nightly - 15min. to 4hrs. ea.

Treatment - Endless tests, 2 good Neurologists/familiar with clusters - Meds - Lithium (1200Mg daily), Verapamil (720Mg daily) Melatonin (9Mg at bed). Been up and down on dosages not getting relief.

Oxygen, Imitrex and Zomig (Don't know if I spelled these right) not effective during attacks.

Recently completed high dose steroid therapy - not effective.

Doctors are stumped/looking into surgeries and adding Cafergot (200Mg daily) to my med mix. I've refused to take Depakote due to side effects and quite honestly am getting concerned with meds that don't appear effective but afraid to stop and chance making clusters worse.

Anyone out there know of anything better than this or anything about surgeries for this nightmare? (not a pun but could be)

Title: Re: new guy-experienced sufferer
Post by nani on Jun 4^th, 2005, 12:14pm

Sorry you had to find us b-t, but I'm glad you did. There is a lot of very helpful info and support here. There are 3 alternatives being used with promising results. You should look on the Medications board for threads on kudzu, LSA, and psilocybin ('shrooms).
Were you using 10-15 lpm of 100% oxygen with a non rebreather mask? Look at the oxygen info link on the left.
There are also other meds should you decide to go that route. The Meds board has info on those, as well.
I hope you find something that helps you. Stay strong, you know you can fight this. Keep us posted. Good luck and pain free wishes, nani

Title: Re: new guy-experienced sufferer
Post by burnt-toast on Jun 4^th, 2005, 12:57pm

Thanks nani

Oxygen therapy was tried in years 3 & 4. I don't remember specific lpm but my Doc. steadily incrased flow until I was receiving pure oxygen at full tilt. I was using a full face mask prescribed at the time.

The drug therapys you mentioned seem to be in the early stages of experimentation but I will continue to search med-threads. Thanks again for the direction.

I'm curious to know if anyone is familiar with some new surgeries. As I undersand it an electrical stimulator is implanted in the brain to send constant pulses to Tri-Geminal nerve and eliminate clusters. Unfortunately I have had little success finding detailed information. I understant that the treatment is more readily used in Europe.