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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> CH treatment via nerve block?
        
(Message started by: oenomel on Jan 11^th, 2004, 12:42am)

Title: CH treatment via nerve block?
Post by oenomel on Jan 11^th, 2004, 12:42am

Hello everyone,

I'm new here, and I am not the CH sufferer in this family(I be da sufferee). The love of my life, Johnny, is afflicted with CH. He's 56, I'm 41. Maybe he will post here in the near future, I'm not sure. For now, I will be his representative, so i hope you will all allow me to speak for him (this is his wish).

We are about to embark on a treatment that i am really unsure about He has tried the triptans, both imitrex and sumatriptan, to no avail. O2 doesn't do him much good either. He just came off of a 16 day treatment with prednisone, which knocked them out during the duration of the medication, but here we are just a few weeks later and they are coming back. His docs have opted to give him mega pain drugs for when it gets really bad, ie, Fiorinal. That helps, but it really knocks him down, and he doesn't want to be crippled by meds themselves. So now, his neurologist has sent him to a pain specialist, who wants to inject him with some temporary 'nerve blocking' drugs. This is supposed to 'reset' the nerves back to normal, supposedly. Does anyone have any info on this sort of treatment, and the results? I have tried to find information online, but have come up empty. I wasn't able to attend his visit with this doc, unfortunately, so i dont have any specifics regarding the treatment (long story....we live together in Shreveport, LA, but his docs and his insurance are in Houston...i will be going with him for this treatment, however). Any helpful advice or direction as to where to find info would be greatly appreciated.

btw, i've been reading up on CH and the various treatments for some time now. After reading what is claimed here about the efficacy of psilocybin containing mushrooms, as well as the positive reports from those who have been medicating themselves with such most recently, i have become convinced to try this, as has he. I am a molecular biologist by education (Ph.D., but not currently active as such career wise), as well as a former experimenter (personally) with psychedelics. In short, that means that i am well versed in growing bugs and fungi, and am pretty well versed on what to expect while under the influence. We've ordered the spores and the mycobags so that we can grow our own, but it's gonna be another month or more before we can even begin to try that treatment. I'm really very excited about the prospects of that approach, but am concerned about the effects of what his docs are choosing to do on what we have chosen to do. Again, i am looking for advice, knowledge, and personal accountings of one's own experiences.

Please help...all input will be greatly appreciated.

My real name is Rhonda, but if you have to call me oenomel, mel will work just fine.

thanks for listening,

rhonda

Title: Re: CH treatment via nerve block?
Post by forgetfulnot on Jan 11^th, 2004, 2:26am

Rhonda thoses bags aren't all that great,

Quote:

We've ordered the spores and the mycobags so that we can grow our own, but it's gonna be another month or more before we can even begin to try that treatment. I'm really very excited about the prospects of that approach

Best to use the 1/2 pint jar technique as described at

clusterbusters.com

Good kuck, Lee

Title: Re: CH treatment via nerve block?
Post by Bob P on Jan 11^th, 2004, 7:18am

The jar growing technique produces more. In my experience it usually takes 8 to 10 weeks before they start producing.

Last cluster I dosed 4 times with the fungi. It didn't touch my clusters. They went on, right on schedule. In fact, it wound up being the longest cluster I've ever had. I felt I should share my experience so you wouldn't think the treatment is the end all of all treatments. It doesn't always work.

Title: Re: CH treatment via nerve block?
Post by itsme_Unsolved on Jan 11^th, 2004, 11:04am

Imitrex is Sumatriptan.

nerve blocks ... you'd have to be more specific on which nerve block you're referring to for me to comment on. There are 3 that I know about (first hand):
The Sphenopalatine nerve block, Facet nerve block, and the Occipital nerve block.
The Occipital was the most effective for me. 17 days PF. The others didn't work at all. None are really painful or dangerous.

Unsolved

Title: Re: CH treatment via nerve block?
Post by oenomel on Jan 11^th, 2004, 1:51pm

Sorry...i meant imitrex and eletriptan (Relpax).

Thank you for the lead...now maybe i can get somewhere.

rhonda

Title: Re: CH treatment via nerve block?
Post by kissmyglass on Jan 11^th, 2004, 1:54pm

Welcome, Good Luck , Be sure to go to clusterbusters.com & keep us posted,

Kev

Title: Re: CH treatment via nerve block?
Post by clarkma7 on Jan 15^th, 2004, 1:35am

Hi

I have had nerve blocks twice now and both times it has broken my cycle. At present I am waiting to have Cryotherapy to freeze my cranial nerves hopefully for a long-term solution.

Regards Martin

Title: Re: CH treatment via nerve block?
Post by taraann on Jan 16^th, 2004, 11:11am

I had the Occipital Nerve block last winter (last cycle) and just felt numb on my scalp and such but had a mild CH hit that evening (if I remember the time correctly) then by late that night had a med hit then by the next am I was back to my normal CH scheduling. So overall not even a half day PF. Just my experience with it.