Daveengland

im in suffolk,very rural part. they worked years ago before i had the implants but ive not had any success since then. tried various hallucinogens,but was never able to get the relief that i got before. thanks for Toms info

hi, on reading Toms blog,in january he kinda announced he’s done with blog’s,social media,etc. So i guess thats the probably the end of that then. thankyou all for reading,and helping. shame not better news for me! all the best Dave

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

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

i did communicate with tom,briefly,but wouldnt have the foggiest how to get in touch with him now. think it was 2018 last time we talked,and i dont think he still on here?

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

oh wow. thanks for getting back to me . thats kinda stopped me in my tracks.

Hi, I havn’t been here for years,username is Daveengland, Had DBS and ONSI for clusters,hasn’t been the tremendous success it first promised and am feeling fairly down about things. Does anybody here have these implants,and willing to correspond?

Haven’t been here for a long time. But yeah,DBS initially in 2012. was removed and replaced feb 2018. and I had ONS July 2018. medicinally intractable now. but i’m Still standing!!!!

F**k i knew it was bad and each time was a potential heart attack. but i'd been told that. never seen it written in black and white. there's been times when ive used far,far too many in a short period of time. thanks for posting that PF wishes to all dave

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 daveengland

hi moxiegirl, i was prescribed melatonin by Queen Square.had to by it online,as its only available on prescription for travel sickness. didn't help me tho. dave

its called a gammacore.this is the device that PG is trialling at the royal free hospital in london.members of OUCH UK have trialled it and there is information about its use on the message board. dave

dan, thanks for the kind words.i hate the fact that surgery is the only option available to me now.i hope and pray to god that if ever my descendants got this horrible condition we have more knowledge(and weapons in our arsenal). hate the meds,the way they make me feel and think, but im hoping for a life med free,relying on the DBS. One thing that every one is talking about over here is GAMMACORE.its a topical stimulator for the Occipital nerve. i dont know how to post links(bit of a luddite when it comes to computers!! the people posting about gammacore on OUCHuk are very very positive.its used ,i believe,as a preventative AND abortive. still going through hell each day,but aiming to bust this weekend as the wife and kids are away,will post hopefully more positively dave

Apologies. My mistake Dyno is correct,its ONSI not DBS.didnt want to spread disinformation,the daily mail is very good at that itself........ Sorry Dave