KareBear

Everyone here is too kind, I am grateful to have you as friends. Chemo round 1 complete. Whoop!

I have been on Social Security Disability for 5 yrs too. I believe they have it classified as a heart condition.

What I would do is make an appointment with a "maternal fetal medicine" OB specialist. They deal with high risk pregnancies and you can visit with them before getting pregnant to find out any risks or problems you could have with dysautonomia and pregnancy. They know about all diseases and the affect they have on mother and baby. They can be very helpful and help you make an educated decision.

Cant wait to hear how your upcoming appt goes! Rest, rest, and relax til then I will be keeping my fingers crossed for you. Good luck!

So glad to hear things are possibly resolving! Keep it up

Welcome, I am sorry you have to join us but hope you find help and support. Have you tried seeing a doc that specializes in POTS or ANS disorders? There is a list of docs on this site and you can see if there is one close to you. There are so many symptoms associated with dysautonomia, and of course your symptoms do match up with others here, but also many illnesses have similar symptoms. I know the frustrations of the ER, they never seem too helpful for us, but I suppose are schooled mostly on life saving techniques. Keep being your own advocate, it's hard but it will pay off!

Sending all my reserves your direction! Take all your meds, lots of fluid, rest, and fingers crossed you can make it out for a quick dinner tonight.

Thanks for all the support! It means a lot!

Oh no, I hope you can stay laying down and have some help until you can call your doctor. If you have help, let them take care of you and rest this weekend. Days like this are tough and upsetting. Sending big ((hugs)) your way!

How scary, I'm so sorry! Did they give you any kind of other meds or an inhaler at least? Seems like you need some relief now. ER visits are so frustrating most times. I hope it gets better soon!

How is your BP and heart rates? I'm sure you are scared, I know I have been thru this and I'm sure many others on here too. I dont know what has helped my chest pains exactly but since starting propranolol (beta blocker- the only one that has actually helped my tachycardia some) and since being on oxygen at home I no longer have the severe and scary chest pains. Sometimes I get mild ones but just a nagging pain, much milder. I dont know much about the other cardiovascular issues you mentioned but if you asked your doctor for the specific tests, would he do them? I hope you find something that can help!

Chaos, Mine is a grade 3, stage IV, epithelial ovarian cancer. In other words "I shoulda gone to the doctor sooner" cancer lol. I am sorry to hear about your daughter, that has got to be hard seeing her go thru this too. I have several family me,bers who also have POTS just not as debilitating as mine for some reason. AllAboutPeace, Thank you for the hugs! Dexter is doing MUCH better and is not so hyper. He likes to sleep a lot now and is more on my schedule, yay. I will keep you updated. Thanks again! E. soskis, It's sad that docs dont understand that some people cant just bounce back after surgery. Are the plasma exchanges helping you? Hopefully it was worth going thru the surgery in Aug. Thank you for your kind words, prayers and positive thoughts are always welcome. I am typically one of those annoyingly happy people so it takes a lot to break me down, this will be a huge test but I will get it a whirl.

I dont have any expertise on this topic but would think if you have a disability and a doctors note stating you have to stay hydrated that the hospital would have to find a way to accommodate you. Maybe they can have a different location for you to keep water besides the nurses station and make sure you have regular access to that area.

It sounds like you are having a tough time with this, have you seen your doctor recently? You may want to get it checked out.

Thank you Chaos, you brightened my day! ☀ I'm so happy to hear yours was benign, it must have been scary waiting to find out. I can see how this could trigger POTS, it's a shock to the body, it's just crazy that there is nothing they can find to help you improve. Very frustrating. I'm certainly battling mentally over how this will all turn out, my cancer cannot be cured (so they say) but hopefully managed, yet I'm not sure how long I will be able to tolerate treatments. Eight cycles of chemo will last about 8 months. It will be an experience but I'm up for the challenge

I read this about the ultrasonic dental scaler, and effect on the body: "High intensity noise can also affect physiological system. Exposure to noise can cause an increase in blood pressure, quickened pulse, and constriction of blood vessels. It has been found that hand reflex time to stimuli lengthened after human subjects had been exposed to noise, and precision movements of hands and arms were also affected." Found article here: http://onlinelibrary.wiley.com/doi/10.1111/j.1601-5037.2007.00217.x/full Not sure if this is what you experienced or not. I hope you are feeling better now.

It's been quite a few years since I had been on Coreg (extended release) and from what I remember it was one of the few meds that seemed to help my heart rate without making my symptoms worse. The problem was back then my insurance didnt want to pay for it (I dont think there was a generic yet or something) so I had to stop taking it. I hope it helps you! It always takes me a few weeks or longer to adjust to a new med so I'm sure you may be going thru that too. Good luck and let us know how it works for you.

Thank you so much Chaos, it helps knowing I am not the only one with this delayed reaction from surgery, mine happened just like you described yours. I was feeling confident that I had avoided a set back from surgery until this week suddenly things got worse. I am going to have IV chemotherapy. That should be interesting. I imagine it will affect me quite a bit.

Thank you badhbt!

I'm so sorry it is causing so much stress for you. I recall my trip to Mayo and it was such a crazy schedule it was exhausting and I did have some scheduling problems too. I hope the call tomorrow will resolve the problems for you. Hang in there.

Thanks everyone! I am going to keep taking my usual meds and see if things improve over time (per my doc) and if not he will adjust some meds.

I had a major surgery about 2 weeks ago and though I was more tired and weak than usual, I didn't feel like it significantly affected my ANS issues. But, the last few days things have been worse than they have in a really long time. My question is can surgery still possibly be the cause? Could the reaction be delayed since it just started this week? I was hopeful that I would recover without a huge set back but it hit hard this week and seems to be getting worse. I am calling my doctor tomorrow about it but was curious if this has happened to anyone else. If anyone had a delay in worsening of symptoms after a surgery or illness.