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DBS implant


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G'mornin @Daveengland!!

It has been a spell seen I've seen you here but do remember some of your old threads.....i looked back at one and see that @ clusterheadachesurvivor aka Tom was the last to comment on that thread......as best I can recall ya'll are the only 2 members here over the 14 years we've been that have had dbs....@bejeebers @CHfather??

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ive been feeling like a blue whale,that news kinda makes me feel a whole lot worse.

was hoping to find somebody to talk to,to share experiences.

had a close friend with clusters,DBS,ONS ,but he unfortunately died 2020.

carry a lot of shit,pain,depression,been 23 years chronic.finding it a bit difficult at the mo

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I think you're right, it's been 2018 since Tom contributed to discussions. I suppose you could always try direct messaging him via the site here, as that should deliver a notification to his email. 

I do remember how much success, and pretty much a new lease on life, he'd found with busting following his DBS, and I would hope the same could work for you if you develop a renewed interest in busting and the D3 regimen. 

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33 minutes ago, Dallas Denny said:

as best I can recall ya'll are the only 2 members here over the 14 years we've been that have had dbs....@bejeebers @CHfather??

I believe Tom's handle here was actually ClusterHeadSurvivor.  I tried to reach his blog, but it doesn't seem to be up anymore. The last post I see at his YouTube channel was nine months ago. talking about the success of his stem cell therapy for CH.

It is kind of surprising how few DBSs there have been among people here, considering that articles about DBS sometimes describe it as "widely used," and there are still journal articles being written about it. 

This isn't really helpful, but I do remember one other person, from way way back, who said he had been "electrocuted" on a job site and eventually had DBS. (I think I remember him because he wrote "electricuted," which seemed like a better way to spell it.)

On another side note, I was just looking at a 2017 journal article about DBS, and a letter a doctor wrote saying "Surgical intervention should not be considered for CH unless indomethacin was tried in adequate doses (225-300 mg) for adequate periods of time. [4] Very large doses may be necessary for treating patients with CH who tolerate medications much better than patients without CH. [4, 5] One patient with chronic CH showed complete response to indomethacin 150 mg three times a day."
I'm not saying this prescription (Indo before DBS) is correct -- it's just that I think this is the first time I've read about high-dose Indomethacin as a possible treatment for CH.

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did try Indo twice years ago.

yeah thats what im starting to think.

but surely there must be more sufferers out there who have DBS.

surely?i know my hospital does still do the operation,but i think that the results havn’t been as dramatic as they’d hoped.

but thats pure speculation on my part as ive never had a follow up about the actual DBS procedure.

i have the device interrogated once a year,but never had a chance to speak to anyone other than my old friend about the actual device,living with it,still getting attacks,feel useless etc

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@Daveengland from what I've observed in the Facebook clusterhead communities, dbs seems to be something that ya'lls health system considers much more often than here in the states......I've seen a few UK clusterheads in those groups who've had or are being considered for dbs....I've seen no one report success I'm sorry to say!

I've seen several OG posts and comments (Facebook not here) on other threads by Tom in just the past couple of months and that's the first I've seen of him in many years now!!  I was under the impression based on  his comments that he had some kind of blog or YouTube channel going???

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yeah,ive managed to find his video channel on you tube.

ive sent him a message,i hope he replies/remembers me.

im a member of OUCH uk,went to my first conference for 10years and was quite shocked to discover how few people actually had it done.

the whole thing with them seems to have gone away from neuromodulation.

they promote the Gammacore device heavily tho!

just never thought id be in this position,of not knowing anybody else with one for this condition.

its fucking hard 

thanks for everything tho

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Hey @Daveengland!!

So, I went back and looked at one of your old threads regarding Ketamine.....noticed a comment from you about "shrooms working to relieve the pain".......was this something that you tried, it worked, then stopped working?  Where are you located in the UK?

Regarding Tom......I just had a chat with him.....sending you a PM...


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