Reaction to anesthesia or very low electrolytes

[edriscoll]

I was in the hospital yesterday for a standard colonoscopy.  I have dysmotility so the test required additional prep using magnesium citrate (a saline based solution) as well as a PEG (that is described as a solution that "pulls water into the intestines") So, I was warned that I would need to "work on my electrolytes" after the procedure, but that's it.  I was given propofol as anesthetic.  

I had all the "usual" things to deal with to get set up for the test - when they laid me down my HR spiked, my BP dropped.  They waited, it resolved.  They turned me on my side - same thing happened.  During all of this I needed oxygen because my level kept dropping below 90.  Background info - I do need oxygen at home, but only when I'm moving - doing housework, taking the dog for a walk, etc.  When I am sitting still, on computer, watching tv, whatever, my stats are 95 to 100.  I have restrictive lung disease from scoliosis and having dysreflexia (one of the dysautonomias) and POTS.  

So that's the background info - clearly I was having some POTsy stuff going on before it started but my question is whether anyone with POTS or any form of dysautonomia has ever had a reaction to anesthesia or a severe drop in electrolytes?  I woke up with chest pain - burning every time I tried to take a breath.  My stats were below 90 and I already had oxygen on.  I was shaking uncontrollably.  I couldn't walk.  I was so weak I could barely sit up. I had a pounding headache.  To be really clear, the test went fine.  There was nothing done during the test that would produce that sort of reaction.  Because this was a test done at a local hospital, none of my doctors were there.  I, stupidly thought, I'd save myself the 1 1/2 hr. drive and stay local.  BIG mistake.  The doctor and the nurses in recovery just kept saying "do you want to go to the ER?"  and looking at each other like "oh boy, how do we get rid of her?"  They, big surprise, knew nothing about dysautonomia and didn't really want to know from what I could tell.  I wasn't about to go to the ER.  So my husband got me a wheelchair and I made him take me home.  My plan was that if I wasn't feeling better in a few hours, he would take me to the hospital where my doctors are.  It took me from 9:30 a.m. to about 8 pm to finally stop shaking & to start feeling better.

I'm left with two thoughts - either my electrolytes were so compromised that it caused that reaction or the reaction was to the anesthesia or possibly a bit of both,  Has anyone had a similar reaction to either electrolytes being compromised or to anesthesia?  It would be very helpful to hear what others have experienced.  Thanks!

 

[Guest KiminOrlando]

I had propofol for a surgery and my O2 dropped. I am not currently on oxygen.  What they found with me was it somehow effected my adrenals and tanked my cortisol levels. I also went in knowing I wasn't properly hydrated because I couldn't drink for 12 hours prior.

My best guess is that the prep dehydrated you so your HR spiked to maintain your BP and it still wasn't enough to properly oxygenate your blood. It was likely cold in the OR and they probably used a finger tip O2 sensor. If you have Reynaud's, the cold affected the O2 reading. My doctors use an ear probe for my O2 monitor because of my Reynaud's. They say it gives a more accurate reading for me. If you had an ear probe and your O2 was that low, I'm not sure I would do that again without having both a cardio and pulmonologist review those records.

After my surgery, I couldn't stay conscious even to sit up. I had the same feeling of shaking and just struggling to know where I was. I had some old prednisone in a drawer and had someone dig it out. I stayed on the floor in the bathroom for an hour drinking fluids until I got up the strength to get in bed. I wouldn't go to the ER either because I knew they wouldn't know what to do and I didn't feel like dealing with them. My good doctors are in another state.

I only got out of post op because they wheeled me out in a wheelchair. I almost collapsed going from the bed to that chair. They decided that because my O2 could get to 94 if I didn't move, didn't talk, and breathed as deeply as I could that I was good enough to leave. It was outpatient surgery at the hospital and they needed the bed. The waiting room was full of people.

I called my good doctors after that and they ran an 8 am cortisol and found it was very low. Surgery further stressed my body and things just weren't good. Going forward, they plan to give me IV steroids during surgery and post op oral steroids. 

I think we should put Propofol on a watch list to see if other people react to it or if it was incidental. It would be interesting to know how it works, gets metabolized, etc. I have yet to meet an anesthesiologist who has even heard of dysautonomia and doctors that know dysautonomia don't know much about how anesthesia works.

I'm sorry you had such a scary experience. 

Kim

[MomtoGiuliana]

I don't have any experience with any of this but want to say so sorry you had such a bad experience.  I hope you are feeling a lot better today.

[edriscoll]

Thanks so much KiminOrlando for sharing your story.  The info is very helpful.  I am most definitely going to have my neurologist look over the records so we can be prepared if I need anesthesia again.  Your story about how they pushed you out of the bed because they needed it is so common and so dangerous.  I was lucky in that I had my husband with me and he wouldn't leave my side when he saw the reaction I was having.  Poor guy looked a little pale himself, lol.  But imagine the person who is alone?  Or someone who is dropped off at home, unable to get to water or meds? Thanks again for sharing your story.  I have to believe it was a reaction to that anesthesia - or maybe any anesthesia....Hopefully neither one of us will need to experiment any time soon.  

And thanks so much MomtoGiuliana  for your good thoughts.  I'm definitely not  back to normal - even my normal, lol  But I'm still working on it.  Thanks so much for thinking of me.

[Guest KiminOrlando]

I spent some time on the internet resesrching propofol yesterday because you got me thinking. All of the symptoms you mentioned were listed as known side effects.

Besides that, it talks about GABA reuptake receptors and I wonder if that might have something to do with it. It went on to talk about Propofol Infusion Syndrome which is from long term use of propofol, but it talks about how it interacts with catecholamines and causes problems. It specifically mentions norepinephrine.  It also talks about people with chronic illnesses.

Start with Wikipedia. It may give you a starting point for a conversation with your neurologists. 

After what I read, I can't believe they thought this was the anesthesia for us. The other choices must be worse.

Please post if you get answers.

Kim

[edriscoll]

I will most definitely post whatever I find and thank you so much Kim for continuing the conversation.  I think this is another perfect example of the need for awareness.  I think that most of the anesthesiologists and medical staff doing the routine exams, tests and outpatient surgeries - have a protocol that they use, in this case Propofol and they don't think past that protocol.  I tried to speak with the anesthesiologist and the doctor doing the test. I asked both of them if they were aware of dysautonomia.  Of course the answer was no.  But what is so dangerous for all of us is that they don't seem the least bit interested in finding out.  I would think that if I was a doctor and the patient in front of me said they had an illness I had never heard of, I would at least take the time to find out what it is and if the things I'm about to do to them will hurt them or not.  

I will NEVER do anything more serious than a simple blood test at any hospital other than the one that my real doctors are associated with and I won't ever go into another anesthetic situation without first clearing what they are planning to use and do with my neurologist,

Thanks again for the info.  I will post back with what I discover. 

[corina]

edriscoll, I've been having huge problems while under general anesthesia, due to dropping bp (0/0) leading to cardiac arrest and (in the longer run) severe dysautonomia. When I had to have my gall bladder out last december I was so very scared to end up in my power chair again. Fortunately the anesthesists were very well prepared and worked with a very strict protocol. Even when they had trouble putting in the artherial line (to measure bp via artery) they held on to the protocol (someone suggested to put me asleep first so I wouldn't hurt so much while they were trying to get the line in) as to not risc my heart getting into cardiac arrest. Everything went very well and I came out of anesthesia much better than ever before. Still quite sick (throwing up for days) and sleeping most of the days and other discomforts but still better than before and NO extreme bp drops nor cardiac arrest which was a huge relief. I don't know the roll of electrolytes in this but wanted to share my experiences as you better be safe than sorry. Take care! 

[Roxy]

I have had more surgeries than I can count ( I am allergic to locals- canines the amides and esters) and I always had issues until my new doctors listened to me and were willing to have an open mind. They always give me IV fluids before, during, and after, keep a very watchful eye on my temperature, O2, and bp ( sometimes multiple monitors for those items) Then if needed steroids, electrolytes, heat packs, cold packs...I still feel like crap afterwards but it lasts for a lot shorter time. 

 

[MoonSpeak]

Hi, I had a similar reaction to the prep for every colonoscopy I've ever had - which is 4 or 5, now (I've lost track).  Each time my adverse reaction was worse. I finally figured out that I was having legitimate adverse response to the PEG. Polyetheleneglycol is a potentially dangerous chemical. When I found out, by researching PEG, that mitochondrial patients are sensitive to PEG & Propophol, a light when off that I may have mitochondrial disease. Which I'm now being investigated for at a genetics clinic. Turns out POTS, dysautonomias and even mast cell very often "travel with" mitochondrial disorders/diseases.

Best of luck to you!

[DizzyGirls]

Was reading this thread with interest as my daughter went under general anesthesia yesterday to do a full spinal MRI.  She also has dysautonomia, POTS, MCAS, etc.  She actually does really well with propofol.  I did ask if they could run a bag of saline while they had her under, as she was getting dehydrated from not drinking (she drinks about 4 liters a day).  Oddly enough, she has a couple of better days after the anesthesia and does look forward to it.  We had an absolutely fantastic anesthesiologist who actually stayed by her bedside for about 45 minutes after the MRI, just so she could watch her extra (due to her dysautonomia and other neuro symptoms).  So, just to play devils advocate, not everyone with dysautonomia would react adversely to propofol.  Sounds like there could be a distinct connection to Hyper-POTS.  My daughter, as far as I know, does not have hyper-POTS, so maybe that's the difference.  Anesthesia is always kind of a guessing game on any given day.  Never really knowing for sure that you will react the same each time.  In all likelihood, my daughter will have to undergo surgery soon for cervical instability and I hope that she does as well under a longer surgery (about 4 hours) as she does for a 2 hour MRI. 

[Moiraine]

Hi, please next time go to the hospital where your doctors are. While it could have been the drug, I am thinking it was the stress on your body from the hours of having to do the clean out and being dehydrated. It was just the entire thing. I get sick when my body gets overtaxed...headache, nausea, weakness, I get shaky, etc. You get the picture?