Jacquie802

Hi guys, I forgot to ask this last week, but when I went to my new neuro he happened to ask if when I'm in the shower if my skin seems to wrinkle up faster than it used to before the autonomic neuropathy...Anyone know why he woudl ask this???? Thanks, Jacquie

Hi, I am also waiting for a hearing...

Hi, I just wanted to let you know you are in my thoughts and prayers..I am sorry for the losses you've had to endure. Have you looked into seeing an endocrinologist?? Jacquie

Melissa, I hope your back home soon again, but this time for longer..Glad they caught this sepsis infection alot faster than the last one...Hang in there hun, we are all thinking of you. Jacquie

Hi Tearose, Sorry things have been going soo crappy for you...I also have the sleep probs, my docs are plannning on putting me as an inpatient to see what's going on. I feel so much more irritable, etc. due to my horrible sleep patterns..My EP said he has an older women who has the sleep probs like I do (waking with tachy, sweats, etc.) and that they found numerous arousals (I'm guessing that means the adrenalin shoots up???), so it would be interesting to see what would be found with me. Most of the time it's the "hot flashes" that wake me up...Being 22 y/o I think I am too young to have those quite yet!! Anyhow, I hope you get soem sort of answer! Goodluck and keep us updated! Jacquie

Just curious if anyone else on here has a nasty cold that just won't go away. I've been sick for about a week and I'm feeling worse, not any better.. Does having POTS, etc. mean it takes longer for us to get over a cold??? I'm most likely going to take a trip to the docs but just wanted to see if anyone else is or has been in the same boat as me... I also am finding it hard to drink fluids, which is bad, but I have the nausea even worse than usual. Also, I've been waking up soaked in sweat,but worse than usual..I have no temp. but I do usually get the sweats anyhow, my question is whether we experience more symptoms due to the POTS... Thanks! Jacquie

I took both the florinef along with the BB together in the past...It worked very well, however I had to stop due to the headaches I was getting....My docs and I aren't sure if the Florinef caused them or I just get them in general because I still do get the headaches now... Goodluck! Jacquie

I also want to wish everyone a very Happy, Healthy, Safe Holiday with their friends and family..Hopefully this year brings happiness as well as good health for all of us!!! Happy Holidays! Jacquie (Massachusetts)

Hi, The testing is going to be done @ Boston Medical Center.

Hi guys, Just curious why the doc wants me to sit, stand, etc. while getting my blood drawn..I think he said it is going to measure my norepinephrine, but I'm not sure why it matters the position you are in...Is something released in your blood???? Just very confused! Jacquie

Compared to almost everyone on this site I was very lucky to be diagnosed 3 months into having POTS. I went to my PCP who thought it was anxiety. Then I ended up in the ER every week, 3 or 4 times a week and finally the hospital kept me over night to see a cardio..That cardio ended up being a life saver. They figured out that I had an arrhythmia, so I was sent to see an EP in Boston, had my ablation then a tilt table after I was still getting the high rates and poof! I was diagnosed with POTS. I consider myself to be lucky that I live soo close to Boston where there are numerous teaching hospitals, etc. Just the other day the new neuro I see diagnosed me with having autonomic neuropathy...We'll see where I go from here! I think it's a personal decision whether you continue to get 3rd, 4th or fifth opinions, but I think if they all start getting at the same thing (POTS, etc.) then it's time to accept that..

Thanks guys. Melissa, I also wasn't sure how to do a search for that type of question Also, can autonomic neuropathy "go away" like POTS can over the course of years, etc.??

Hi guys! Just got back from my visit with Dr. Novak, what a great doc he is. He was very very thourough and I spent an hour with him. He diagnosed me with Autonomic Neuropathy..My question is whether or not this is the same thing as POTS???? Today tachy wise I wasn't doing too bad today and my BP wasn't too shabby either (figures since I went to see the doc). I'm just soo confused I think because all along I am thinking I have POTS then I hear another name?!?!?!? Ahhh I don't know. I told him about alot of my symptoms and he wants to have me stay as an inpatient in the near future for a few days so they can monitor everything...Anyhow, just thought I'd let you guys know how I make out! Jacquie

How long were u tilted upright with hr like that?? My HR went up to 170's and my bp dropped wayy low so the doc lowered me. This was after being tilted for 7 minutes.

No meds for me! I wore a helmet like thing that showed decreased blood supply to my brain. I had a positive tilt. Jacquie

Hi guys, Dealing with my horrible stomach lately, just curious if I should even mention this to my neuro..?? Has anyone gotten help from their neuro for this? Jacquie

Goodluck tomorrow morning if you're anything like me! I get horrible tachy and what not and nausea off 2 lite beers... Let me know how you feel tomorrow!

Yay!! I'm soo happy that you found something that helps!

Hey Nina, those pics are soo adorable!

I see Novak this Friday! I'll let you know how I make out... Jacquie

Possibly the ghost of Christmas past?? Sorry just joking around. I do get the visual probs when I get headaches though, I'm guessing its from them. Also, when my bp is low enough i have horrible vision and it feels like the whole place is spinning....

Congrats!!! I'll send you a PM! Jacquie

My BP never really went up with the Florinef, but it did seem to help me symptom wise....I had to stop taking it due to headaches I got after taking it for 3 months... jacquie

I get that feeling along with sweats...I think when I feel closed in I get more symptomatic because of the increased temperature. Also, I get a little anxious about being closed in places. jacquie

what docs do you see? also, how is this med supposed to help POTS? Jacquie