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!

Thanks for sharing your experience Sarah. Good luck with your case. I can relate to the extreme stress of the whole SS application process. I was turned down when I first applied. At that point there was no firm diagnosis of the Dysautonomia, only the very long list of symptoms of the illness.

When the time came around for my hearing I was blessed by a Neurologist who prepared my chart with a detailed list of every single symptom and explanations of the debilitating nature of each. I also have been doubly blessed by my PCP who wrote a very detailed letter to the judge explaining how all of the symptoms that I have leave me unable to work and about how hard I tried to continue and for how long before finally being forced to leave my position.

The night before the hearing was scheduled to begin, I got a call from my lawyer saying that the judge's office had just contacted him to call off the hearing. He said the judge read the letter from my doctor and the neurologist's records and said there was no reason for me to come in - I was approved! He also said that he had never heard of this illness and was so grateful that my doctors were so detailed in their explanations. He said without that it would have been difficult for him to understand what I was going through.

I think it is important for doctors to understand how much we need them to advocate for us in these situations. So few of the medical community understand this illness - ****, few have even heard of it - so it is really important that our doctors help us get the information out from an authoritative source. I also think we have to take responsibility and ask our doctors to occasionally go the extra step for us when possible. I am very thankful that my doctors were so willing to do whatever they could for me.

I wish you the best of luck Sarah. Let us know how you make out.

Hi Goschi,

Good for you that you found a way to open up a discussion with friends about one of the many, many symptoms that POTS patients go through. But I also caution any one to walk away thinking that HR fluctuation determines a POTS diagnosis. For instance, I have a niece that spends a lot of time laying down reading. She recently asked me if it meant that she has POTS because she frequently feels dizzy and faint when she gets up from the couch. Of course I straightened her out on the facts of the illness and also gave her a strong suggestion that she get up off the sofa and get active - but I leave that for another conversation.

Dysautonomia illnesses have such devastating symptoms and affects that as AllAboutPeace wrote "postural tachycardia doesn't even come close to describing what we experience" In my case for instance, the fluctuations in my HR are not the dramatic fluctuations that many people get. In fact, this caused me to be misdiagnosed for 3 years! I won't go into the reasons why I present a bit differently but the point is many people with these illnesses DO present differently. For that reason, I think focusing on the "postural tachycardia" part of the illness as a sole diagnostic tool is dangerous.

I can appreciate the feelings of confusion regarding the "rarity" of this illness. I was told that this is a very rare illness when I was first diagnosed. However, the more I read and hear about it, the more I realize that it is far more common than first thought. I recently read an article in my local paper in NH about a woman with POTS. The article described her as being the only patient in Southern NH and possibly the state with this illness - yet here I am! And my doctor, also located in NH, has a number of patients with this illness. My point is that even patients don't realize that there are so many others right in their midst. So I can understand the feeling Goschi that it MUST be more common than people realize.

This topic is more proof of why this site is SO important! It is vital that we have these discussions and keep the channels of communication open. And it is also vital that we do whatever we have to to get the word out that we are here and we are doing our best to live with these illnesses in the most productive ways possible.

Thanks to all for contributing to this conversation. Have a great weekend guys!

As with many Dysautonomia sufferers, one of the things that really is a problem for me is overheating. My temp suddenly rises so high that I pass out and I can not tolerate the summer heat and sun at all. So I mostly stay in AC or avoid the outdoors as much as I love being outside. I've tried wetting paper towels and keeping them with me when I go out but they warm up too soon. I discussed buying a cooling vest with my doctor and she said sometimes they work for people but not always. But when we looked into getting one we found out that they can be quite expensive. Then my husband saw an ad.

My husband bought me these towels called Endura Cool by Mission Athletecare. You wet the towel and snap it 4 or 5 times and it cools the towel down - they say to 30 degrees below your body temp. I don't think it is anywhere near that cold but they do stay cool and if they start to warm up you can snap them again.

They are under $20 and so far I have had pretty good luck with them. They don't necessarily solve the idea of going to the tropics but hey, I wasn't planning any trips anytime soon. They do let me sit outside a bit and I can wear one around my neck to take a slow stroll to my mailbox without worrying about passing out halfway down the driveway.

Check it out - it really is a wonderful little tip.

Absolutely! I am so relieved to read all of this - thank you so much Goschi for bringing up this topic. My husband is constantly asking me why I don't just "sit and relax" - but I feel so bad when I am sitting for any period of time. As with everybody else, if I have my legs up or I slouch I can get a little relief but mostly I just want to get up and move! It is so frustrating. If I try and sit for any period of time, I want to get up and move. But when I get up to move, I have to wait and move slowly or I have an "episode". But I can't sit still either or I have an episode. And in between, I am so exhausted all the time that I am falling asleep as well - but can't lay flat down either or I stop breathing. So I am constantly - sitting, slouching,sleeping, standing, walking, sitting, slouching, sleeping, standing, walking,....... on and on... This disease is SO crazy! It makes me tired just thinking about it. lol

There was a great article written by a reporter working for the newspaper I worked for before I became ill with dysautonomia. Here is the link to the article:

http://www.sentinelsource.com/news/local/nelson-woman-with-rare-disease-to-raise-awareness/article_f0e985e5-7c1e-594b-80ec-1c6aa6509ba0.html

I struggled for 10 years working full time in a very demanding career. While working brought me immense satisfaction and self esteem, it also caused me great harm physically. I couldn't take care of myself the way I needed to while working. I finally became so ill that I was having "episodes" in the middle of meetings with the executive management team, during training sessions (where I was the trainer) and finally, in front of several of our top clients. My employer (it was a privately owned company) was extremely understanding, patient and kind. He never would have fired me, but I could tell that he was really torn about what to do. I was most definitely hurting the company as well as myself. My department went from exceeding our budget by 60% to NOT meeting our budget by 40%. I finally had to say "Uncle" and filed for disability. I am 54 years old and not sure of the ages of the people writing this question. But disability is a very long, difficult road and requires a lot of support from family and friends. However, the GIGANTIC bright spot in all of this is that now that I do not have the constant pressure of being somewhere regardless of how I sick I am that day. No more feeling mortified because I passed out and lost bladder control in the middle of a team of 30 co-workers. No more DRIVING after only getting 2 hours of sleep the night before. Now, I can be active at the times of day that work best for me (mornings) and I can walk and move at a slower pace so that my body has more time to adjust to changes. I can rest when I need to. I am actually a bit more active since not working because I can do things at my own pace and stagger activities and rest the way my body seems to need to. I can only say that it has been a blessing for me to stay at home. The challenge is to realize that you HAVE to find ways to keep busy that include using your body and muscles. I do some gardening, I sew, I cook - all when I am up to it obviously. But do NOT stop working if you think it will mean watching tv or being on the computer all day. I think that would be the worse thing a dyautonomic patient can do. (not sure if that is a real word, lol) Good luck finding what will work for you. You are not alone in this....

I have those symptoms too. It happens to me more after I am already asleep. I wake up to the palpitations. It also happens after I eat. In both cases, I have been told it is dysautonomia related. I haven't tried melatonin yet as was suggested but I think I will give it a try. I was told to eat smaller meals and to avoid the three meal a day lifestyle. I am really, really struggling with that one. I was told there is nothing to be done about those types of fluctuations of heart rhythm. Although I still do not really follow why a pace maker doesn't help with this but I have been told repeatedly by a few of my doctors that it isn't advised.

My mother had many problems with POTS type symptoms and her sister has been diagnosed with POTS. I am very worried about my daughter. She is 27 and has had many of the early symptoms that I experienced - low BP, fast HR, dizziness rising and when she was pregnant she had to go out of work at 6 mos. because she could not stand up for more than a few minutes at a time without feeling severely faint. She asked her OBGYN about POTS/Dysautonomia and told her dr. about me and family history and the doctor said "no, it is just a pregnancy symptom" Of course I have never heard of pregnant women not being able to stand up long enough to take a shower but what do I know??? The doctor would not take her symptoms seriously. When she had my granddaughter and got past the initial pregnancy/hormonal changes she is back to "normal". But I worry that these symptoms are the precursor to illness later on. I don't see anything that can be done to prevent the onset but at least we know what to look for.

I too have experienced great oxygen levels during times when I feel as though I am having a lot of trouble breathing. BsSmith85's description of not getting that "full breath" is right on! I have been describing/complaining about this for years. Since I also had a pretty radical scoliosis curve that compromises my chest cavity, this feeling was always blamed on "restricted breathing". I have had two surgeries correcting the spinal curve and I still have the same breathing issues. In fact, they have gotten worse as the Dysautonomia symptoms have gotten worse. So I now believe that this was the issue all along. It is so great to hear fellow sufferers reporting the same symptoms - makes me know that I am not crazy...or alone. Thanks for sharing.