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CCH ,DBS and ketamine


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hi there,

i havn't been on for a while,have been adjusting to life post DBS.

life was great for about six months,then unfortunately the beast came back.

had DBS adjusted,am currently 3.9v across two electrodes.

spent 6weeks in london hospital feb 2014,repeated 10 day infusions of lidocaine-proved to be totally ineffective now,i've developed Tachyphlaxis,-body had stopped responding to medication.

prior to DBS an injection would give me 5 hours guaranteed PF time,now i' m lucky if i get 30 mins PF time.

whilst in hospital last february i got talking to a Doctor,who offered me a trial of IV KETAMINE.

hell,i'll try anything-i'd even eat my own s**t if i thought id would help me.

i can only describe that initial IV as amazing.

the only thing that has ever taken the pain away like that was mushrooms

i've had repeated IV every 6 weeks,since Sept 2014 ive had ketamine on prescription at home.

take 1ml at a time under my tongue,keep it there for 10mins and spit out.

does anybody know anyone else who's had this?

as far as i know i'm the first UK patient to have this.

all the best


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There are several folks here who use, or have used, ketamine.  Their situation was similar to yours -- tried everything -- and their results, as I remember, have been similarly positive.  I'm pretty sure one of them will respond.  I'll just say what I "know." There was an excellent presentation about ket at the 2013 conference. Here are two things I remember, which I might be wrong about (but don't think I am): (1) the stuff gets kind of addictive, psychologically if not physically, and it can be hard to manage that; (2) a "holiday" from ket is strongly recommended (I don't remember how regularly--every six months, maybe?), and that period can be rough. 

Of course, ket has shown very strong effectiveness as an anti-depressant, which doesn't hurt. (Brief article about that here -- http://www.webmd.com/depression/news/20140923/ketamine-depression. A new and very effective anti-depressant that will come onto the market in a year or two has the same anti-depressant mechanism as ket, without the side effects.  Some of us hope this might also work for CH. Info about that, if you're interested, here: http://www.nimh.nih.gov/news/science-news/2013/ketamine-cousin-rapidly-lifts-depression-without-side-effects.shtml.)

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Hey brother, I had DBS as well. I was the 2nd in Canada to have it done here.

After 2 years of programming. Most I could take was 2.7 Volts or room would spin and Id fall over I shut it off.

I did not try anything while my DBS was on. Simply because it would falsify any data.

Last June/July was the worst of my "Cluster Career".

I was just about Suicidal once again. However luckily I was in a different head space at the time with stronger faith and stronger family(now married).

So I "Busted" and after my 3rd dose(the 15 day rule). It worked and been dosing every 2 months and been having great results.

Sadly from DBS, alot has happened. PTSD, total abandonment from friends, and an aray of side effects from DBS. I have never been the same since. Nor will I ever be.

I hope you get relief my friend. Whatever works to be free from the beast I support.Pain free wishes to you and all of you.

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