Problems With Sedation: Anyone Else?

[UnderwaterThing]

Hi. Let me say that I have been lurking here over the last year after I was diagnosed with dysautonomia/POTS and it has been enormously helpful to read everyone's experiences and comments. I am currently being treated by Dr. Friday and Dr. Jaradeh at Stanford but I am at a bit of an impasse at the moment. I haven't had autonomic testing yet and I'm trying to figure out exactly what the next step is.

I had a colonoscopy and endoscopy two weeks ago. I was so worried about the prep but that was easier than what my body does on a regular basis. I tried to explain to the nurses and my doctor before the procedure about my condition but of course they had never heard of it (which makes it difficult) but luckily the anesthesiologist had heard of POTS. After the procedure he came over and talked to me for awhile and explained that while I was sedated my heart rate went up to 150 and every time my doctor moved me or did anything it would shoot up. The sedation for colonoscopies is mild already. He recommended going to Mayo Clinic asap. The whole conversation confused me because I thought I was on the right track at Stanford and that would be my last stop but I know there is still more work to be done to figure it out. Sometimes it feels like we have to be the expert and come up with a plan ourselves. I had a TTT in May last year. I never fainted and my bp didn't drop but my heart rate went up almost 80 beats right after going vertical. I am not looking forward to doing another TTT but I know I have to do whatever it takes to get my life back. Some of my doctors have even mentioned surgery potentially.

Anyways, I was wondering if anyone else has had issues with sedation and if they ever found out a specific cause or solution? The constant uncertainty about any medical procedure is so frustrating. Going from being an active 30 year old working toward a PhD to being couch-bound and not working for a year was a shock and I'm still learning how to manage this new body. Thanks again for keeping my spirits up all this time and helping me not feel alone.

[corina]

Hi undrwaterthing, welcome to the forum! I've been having problems with general aneasthetics al my life. I haven't found out why but it makes my heart race and bp drop while I feel incredibly sick (really bad headaches and severe vomiting). For some reason it sets my dysautonomia off.

Hope you'll find the answers your looking for and that participating here will help you feel better!

[Joann]

Underwater Thing,

I am still in the learning stage of all of this. But last Feb. when I still didn't know I had dysautonomia, I had a endoscopy and one of the nurses told me that my blood pressure went up quite high while I was under. I didn't know to ask how high or ask about the heart rate. They released me because it lowered as I recovered. But I felt terrible for quite a while afterwards.

From what I have seen on this site, this is a common occcurence, don't know why.

[megsmit6]

I was diagnosed July 2012 with POTS and had to have my gallbladder removed the end of October of 2012. I ended up in the ICU because my vitals were so out of wack the surgery would not be safer until I was stable. I told my surgeon the articles I had read about POTS patients having issues with anathesia so he was worried and did some research of his own. I was very lucky because he educated the anathesiologist and had my cardiologist in the operating room just in case. He said my heart rate was fast but with some meds they were able to control it. The day I was put in ICU my heart rate dropped to 32 and I passed out and woke up with pacer pads, very scary! I didnt have the surgery until 4 days after that when they knew it was safe. Knowledge is everything, had I not known POTSies have trouble with anathesia it could have been a different outcome. I have had 5 surgeries prioir to POTS and never had issues. DO research on anathesia and POTS educate whoever is doing the procedure!

[looneymom]

My son's heart rate dropped down to 30 during a procedure last August. My husband and I did tell the staff and doctor that he had POTS. So they were prepared but surprised that it actually happened. Just be sure to always educate your doctors and kept track of what meds. were given for the sedation. This is a scary situation for anyone with POTS.