KareBear

I'd think "borderline POTS" would be enough reason to go to Mayo and get a second opinion. I agree with others that some days our symptoms are worse so could have just been a little better today but your daily symptoms tell a better picture. That was an unusual TTT. At least they are still feeling like it is POTS related. I hope the doc can try some meds to help you now.

Sarah, this sounds absolutely horrible. You certainly did not need this, I imagine it made your heart and BP even worse. I sure hope the complaint you filed is taken seriously and they take action. You have every right to complain, I would have complained more! I'm sending big (((hugs))) your way.

Lol, Lifeless. I agree completely.

Were you still on any meds, beta blockers, before the test? I would wonder if they affected your test possibly. We know that many of us can get our heart rates or Bp controlled with meds but still have all the other POTS symptoms.

Rachel, I can imagine your frustration, this has been a rough journey for your family. I pray you get much deserved answers soon. Your son is lucky to have a mom that works so hard to help diagnose him, if anyone will figure this out it will be you! Sending big ((hugs)) to you.

I've had multiple spinal taps for multiple reasons and dont remember anything being abnormal but then again I never actually saw the report. The docs just say its fine. What kind of MRI are you referring to? I have abnormal neck/spine MRI's.

(((Hugs))) I am sorry the doctor was rude and unhelpful, that's so frustrating when it's so difficult to even make it to an appointment and then to have this experience. It happens way too often to us.

I never knew BB's can cause these issues, or mask symptoms, but this is interesting. I never check my blood sugar and haven't in years. Maybe I ought to check just for kicks.

I'm sorry to hear today is a bad day for you. I have this happen to me often and I'm not sure why but if I overdo it the day before it certainly brings this on for me. I hope your heart rate calms down soon and you feel better.

Summer is worse for me (i dont handle heat) and I love these cooler months but I live in Texas so our weather swings aren't severe like yours and we dont get snow. It's still in the 70's here.

I used to work with a girl with Raynauds and her hands turned bluish when she was inside in air conditioning like at work but this is my only first hand experience with Raynauds. I dont know much about it except what I saw her deal with. I'm sorry you are going thru all this.

My doctor told me it would take me 4-6 weeks possibly to not feel horrible on my new beta blocker and to push through and he felt confident I would adjust to it. It was a terrible 2 months almost for me but he was right I did adjust to it. Like the others said, I would keep your doc in the loop about it but it is possible you need more time to adjust.

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.