Marabi Posted February 17 Report Share Posted February 17 Hey, Few years ago I've developed dysautonomia with many symptoms, probably as secondary to mast cell disease, together with ME/CFS. Since two years it's been much better, I rather rarely have dysautonomic symptoms now, if only I strictly follow my routine. Anyway, due to possible EoE I will have gastroscopy with few biopsies under general anesthesia. I'm worried that this will make my dysautonomia worse again. Especially, because I'm sensitive to meds, but also I won't be able to drink and eat to 6 hours before this procedure. Do you know, how to prepare to this, is that make sense to eat more salt this day? I'll appreciate any tips you can share, thank you!! ❤️ Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 17 Report Share Posted February 17 @Marabi I have had many procedures that required NPO and anesthesia. I used to have problems with anesthesia including high and low BPs and even seizures. They now run fluids before and during them and I no longer have problems. A knowledgeable anesthesiologist would be aware of the special considerations for POTS patients, so it is important you tell them beforehand. Quote Link to comment Share on other sites More sharing options...
Marabi Posted February 17 Author Report Share Posted February 17 @Pistol, thank you for telling me about it, I will share it with my doc, though here where I live most docs rather don't take dysautonomia seriously. Though I will get them know about it. Quote Link to comment Share on other sites More sharing options...
Water Lover Posted February 17 Report Share Posted February 17 Yes, make sure they’re aware ahead of time. Also, specifically ask to be put on fluids as soon as you arrive—make this request to everyone you possible can: your gastroenterologist, their scheduler, any nurse who calls with instructions ahead of the procedure, basically anyone you talk to. I would think salt-loading and extra fluids the day before and following the procedure would likely be helpful as well, though you could check with your doctor about that. (I’d make sure they’re aware that you’re on a high-sodium diet, too.) I have EoE, which was discovered on my way to my POTS diagnosis. (I’m lucky in that my EoE is PPI-responsive.) My first and worst symptoms of overall health problems were GI, and I’m still not sure whether those were actually caused by the EoE, or whether they were dysautonomia-related and the EoE discovery was incidental; I wasn’t experiencing dysphagia, just a smorgasbord of GI symptoms, and the endoscopy that found the EoE was exploratory. All my endoscopies involved propofol sedation. (Not sure how specifically they will be putting you under, but at least it’s definitely not general endotracheal anesthesia—which I have had a problem with—given the nature of the procedure.) After my first two endoscopies, which both came before my POTS diagnosis, I had worsening cardiac symptoms for a couple of days—chest pain, racing heart, all that. It was all very alarming, because I didn’t know about POTS yet and was having pronounced heart symptoms. I think all that was caused by two things. One was not drinking enough fluid: being off fluid for, in my case, 10+ hours before the endoscopy and then not drinking enough afterwards (I obviously wasn’t drinking fluids then at the rate I am now). The other is that my gastroenterologist believes I have a hypersensitive GI tract and felt more irritation/pain than normal from the procedure, which I experienced as chest pain. When I called the urgent post-procedure care line about chest pain, after talking through it some, my doctor recommended Gaviscon liquid, which was a godsend: it calmed my esophagus and that helped calm my heart. I’ve started recommending to anyone who’s going to have an endoscopy that they have a bottle of Gaviscon on hand in case. My third time out (a recheck after adjusting PPI dosage), which was after my POTS diagnosis, I did extra fluids the day before (>200 oz; my usual is 150+), and had asked to be put on IV fluids as soon as I arrived, which was done. That time was so much better. I also think my esophagus was calmer that time around, both because it had had longer to heal from the EoE and because my gastroenterologist had put me on a TCA to help with the hypersensitivity. Anyway, very little pain from that one, and the day following that procedure was the best I felt for quite a long time on either side—I think because of the IV fluids, and also, coming off propofol feels nice: it always makes me feel very clear-headed (even though I guess one isn’t, which is why they warn you not to make major decisions, etc.). Those are just my experiences, and I am not as medication-sensitive as many, so it may look different for you. I’d echo @Pistol on the importance of making sure all the providers, and especially the anesthesiologist or anesthetist, is aware of the condition. (After POTS diagnosis my gastroenterologist actually required me to get cardiac clearance before the next endoscopy.) And fluids—drink them when permitted, and ask to get out on IV as early as you can. Good luck with the procedure, @Marabi! I think things will go fine, and I hope you get helpful answers. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 17 Report Share Posted February 17 @Marabi, After a terrible experience with venous access after NPO (4 hours, 7 nurses, US machine, couldn’t find a vein, almost missed my surgery), I refuse any NPO requests. I insist on being fully hydrated for the stick and IV saline anytime NPO is needed. I found this study https://www.autonomicneuroscience.com/article/S1566-0702(18)30032-8/fulltext detailing POTS surgical hydration needs and share it with my docs. My GI doc adjusted it to a 6 hour wait in IV saline before the procedure. Not sure if the length is due to being fully hydrated for the stick, but I’m tired of “dry pokes and digging”! Nope, nada, no can do! Good luck! Quote Link to comment Share on other sites More sharing options...
Sushi Posted February 17 Report Share Posted February 17 In my experience they are likely to use propofol. I discovered that while it takes me a few days to recover from a higher dose of propofol, I am fine with a low dose and I now ask the anesthesiologist to administer that lowest effective dose for procedures like a colonoscopy where they only need me to be “out” for a short period of time. I also ask that they start IV saline as soon as I arrive. Best wishes! Quote Link to comment Share on other sites More sharing options...
bizbiz Posted February 19 Report Share Posted February 19 Hi @Marabi, Would it be possible for you to speak with your anesthesiologist prior to your surgery? You could let them know of your condition and stress the importance of I.V fluids. I recently (only a few months ago), had major surgery under GA, and while I was instructed to begin fasting at midnight, I spoke with my anesthesiologist and he allowed me to take my beta blocker along with clear fluid (so basically only water), up until two hours prior to surgery. I had absolutely no issues with my POTS, (apart from a moment of tachycardia in recovery), and was up and walking within hours of surgery. Home the following day, with an easy, uneventful recovery. I've had other procedures under 'lighter' aneasthetic (two endoscopies), and had no issues with either of these. I always drink as much water and take as much salt as I possibly can in the days before and after surgery. Good luck. Quote Link to comment Share on other sites More sharing options...
Marabi Posted February 20 Author Report Share Posted February 20 Dear @Water Lover, @bizbiz, @MaineDoug and @Sushi, Thank you so much for sharing your expieriences with me! You have really helped me, how to prepare to this procedure and these are valuable points to share with doctors before my gastroscopy. I will do as you advices. I'm really grateful, guys! ❤️ Have wonderful day! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 21 Report Share Posted February 21 @Marabi, Glad to have been of assistance! We all need to support each other! Thank you for posting the question! I’m scheduled for a total hip on March 18 🤗 and I’m driving to NYC this Saturday for my preop visits. If I learn anything new I’ll add it here! 🌈 Quote Link to comment Share on other sites More sharing options...
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