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Daveengland

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  1. 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!!!!
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. Hi guys, The uk daily mail article is about Deep Brain Stimulation,not the jaw implant.prof goadsby said at our recent OUCH conference that all he is waiting for is a maxillofacial plastic surgeon to come on board then he hopes to be trialling this year. Unfortunately he is at a private hospital,my treatment is on our NHS. I am due to have Deep Brain Stimulation myself later this year. My very close friend underwent the procedure 5 weeks ago.no medication other than paracetamol since. He,like the lady in the article,is very very happy. Dave
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