Allotmenteer Posted June 16, 2013 Report Share Posted June 16, 2013 I had to have an endoscopy recently to investigate my 2 stone weight loss. I opted for the sedative as this worked a treat 4 years ago when I was tested for coeliac disease. However, since then I have developed dysautonomia as my Lyme got worse, and this time round the sedative had absolutely no effect on me at all. They gave me 3 doses and I was still wide awake, so they had to just get on with me still conscious. It was all quite ghastly. But i don't really understand the mechanism which stopped the sedative from working, can anyone explain? Is it brain dysfunction? Quote Link to comment Share on other sites More sharing options...
AmberK Posted June 16, 2013 Report Share Posted June 16, 2013 Hopefully someone will come along who will be able to answer your question. I'm unable to, but just wanted to say how sorry I am to hear what you went through. It sounds absolutely horrible Quote Link to comment Share on other sites More sharing options...
badhbt Posted June 16, 2013 Report Share Posted June 16, 2013 If you have been on any benzodiazepines that can affect your tolerance. Same with pain medication/anti depressants also. It makes you have a higher tolerance to the sedation. Hope that helps Quote Link to comment Share on other sites More sharing options...
E Soskis Posted June 17, 2013 Report Share Posted June 17, 2013 I don't know what type sedative you are speaking of - I do know that anesthetics, pain killers, sedatives, hypnotics and other similar compounds react differently in patients with dysautonomia. I once read an article written for anesthesiologists in a medical journal that detailed how a patient with dysautonomia compares to a "normal" patient. There were quite a few warnings about different induction agents and related compounds that were contraindicated in those of us with dysautonomia. I remember waking up during many operative procedures - sure surprised the OR staff! Now, I insist the anesthesiologist look up the appropriate medications and induction methods for dysautonomia before any operative procedure and things have gone better ever since. Quote Link to comment Share on other sites More sharing options...
margiebee Posted June 17, 2013 Report Share Posted June 17, 2013 When I had part of my thyroid removed I started waking up early, I was undiagnosed at the time and the doctor was just astounded because I'm very small and they gave me a pretty hefty dose. Its so strange because I am so so sensitive to other meds and take "baby doses" but it seems sedation isn't very effective on me, go figure. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 17, 2013 Report Share Posted June 17, 2013 This is also a problem for people with EDS. There is an information sheet you can take to give anesthesiologists at www.ednf.org. Quote Link to comment Share on other sites More sharing options...
Allotmenteer Posted June 17, 2013 Author Report Share Posted June 17, 2013 Thanks all for your info. I'm not on any medication at all, and haven't been either. Am hoping that tackling the Lyme will tackle the dysautonomia eventually. I became very sensitive to everything I ate after an allergic reaction to antibiotics, including vitamin supplements, painkillers and probiotics. Discovered this was due to histamine intolerance, as the antibiotic had killed off all my DAO (diamine oxidase). Am slowly rebuilding my gut, histamine tolerance gradually improving, but would have expected my body to be hyper-sensitive to the sedative (which was a valium-based infusion), not totally insensitive! Will check out the EDS link, as I do have a degree of hyper mobility too (albeit very mild - it amounts to being able to put my hands flat on the floor without bending my knees). Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 17, 2013 Report Share Posted June 17, 2013 There's much more to diagnosing EDS than just hypermobility. You can find the other criteria at the link I gave you also. There was also a post recently on the ednf forum that there is a product called DAO-sin sold by Swanson Vitamins (online) that can help those depleted of DAO. The post was started because they have found a gene that can cause DAO deficiency but maybe you can get some help from this product. My immunologist said he has heard about the gene causing deficiency and is researching that aspect to see if it's worth me starting the supplement. I thought he'd laugh when I brought it up but there must something to it because he was right on it. Quote Link to comment Share on other sites More sharing options...
micheller Posted June 17, 2013 Report Share Posted June 17, 2013 I have this problem too. The last 3 scopes I've had, the dr said he gave me enough sedation to put a 'normal' person in a coma. And I was still fighting. I was semiconscious and remember the procedure but have no memory of the ride home or a few hours after that. The same happened when I had teeth pulled. I don't have EDS. Quote Link to comment Share on other sites More sharing options...
Aimes Posted June 17, 2013 Report Share Posted June 17, 2013 I have suspected EDS and have had this same issue. I was awake through one entire surgery but couldn't feel anything. I remember the entire thing though and visited with the surgeon throughout the procedure. Kind of a strange experience! Then, with my last surgery a couple of months ago I was asleep instantly and don't remember a thing. My brother has also stayed awake during a surgery. Quote Link to comment Share on other sites More sharing options...
Allotmenteer Posted June 17, 2013 Author Report Share Posted June 17, 2013 I take Histame for the DAO deficiency, which is DAO in pill form. It helped a lot when I first got histamine intolerance, and with the low histamine diet too I've mostly got it under control - except when I have to have a medical procedure involving drugs. I only take the Histame a few times a week now, but am still on the diet. Have also just started Betaine supplements as I also have hypochlorydia - think this will help the whole gut balance too. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted June 17, 2013 Report Share Posted June 17, 2013 They gave me propophol during my c section because I freaked out. Did absolutely nothing. Didn't even make me drowsy Quote Link to comment Share on other sites More sharing options...
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