Still Down For the Count

[AJVDK]

Hello! Well the last week was been a hard one on me from the trip to the ER on monday to all the folllow up appointments, and still not feeling any better. Yesterday, I was told that since I am still having the rythem that now the are hoping that is is stress of somthing like that as they are out of options all together. So they started me on ambien a few days ago as I can't sleep, and then started me on alprazolam on top of everything else I am all ready on. They said they are trying to just get me out to Ohio as they are not sure what to do here(out of all there options) so I am counting down now, my flight leaves on the 17th, my 1st appointment it the 18th at 12:30 for a tilt table test O'well at least they will get to see my true colors! I am really strating to beleive that maybe I just need fluids, I even asked he doctor again, and he said he didn't think that was the problem. So now I am getting worried about going to ohio. I am worried that I am going to go all the way to Ohio and see Dr Fentnat Found-Tarazi, and get the same results, I know she is one of the best I am just worried I am ever find a treatment tha going to help. I just want to get up that feel somwhat normal. I don't want to worry about FMAL leave as I can't work somtimes due to the POTS. I know I am complaning and am sire some of you have it alot worse, but I never thouhgt my life would end up this way. I cann't even climp a set of stairs with out my heart starting to race on a good day, and I use to pay hockey, and track, ect. I just want to play with my son and can't even do that, at least we read together, I have tried to find the things I can do. I just don't want to get my hopes up, but at the same time am hoping they will know somthing that will help, or know what to try. Sorry for going on and on!!!! Hope you are all going great, I been staying off the boards more to ry and get more rest! Hope you all have a great weekend!

Amy

[Miriam Poorman-Knox]

Hi,

Hear e out! I talked to some people at Pitt about potd, and I found out that geriatrics doctord know a whole lot about this. I made an appt. When I asked if I should bring info on pots, she very matter of factly said no that they know alot about it as people get orhtostatic hypertension and pots!!! Let you know MPK

[HoldOnToHope]

Amy, hang in there. You'll be in good hands and the TTT will hopefully reveal what's up. It sure did for my daughter and she's now on meds that are doing lots of good. Drinking fluids is a huge help to her, too. She has a gatorade or water or something in her hand all day long. Good luck to you.

[faithinspires]

Understanding how you feel and wishing you the best with your TTT and appt!

[corina]

Hi Amy,

I don't have very much to add actually, just wanted you to know that I hope you'll feel a bit bettr soon, and that the Ohio appointments will work out well for you. Good luck on your TTT,

Corina

[tracy]

Amy,

Hope you get feeling a least alittle better before your flight. Good luck at Cleveland. Hope they can find some answers for you.

[Poohbear]

Amy,

I hope you will be feeling better soon!! Rest and take care of yourself to the best of your ability. I can imagine you are frustrated but maybe there is a potential "good" that can come out of this. If you are feeling this rotten when you get to Ohio it may be easier for them to determine what is wrong.

Try not to stress about the FMLA time. I know that's very difficult!!!!! Try though to focus on the fact that you are fighting to improve your health which will make you the best employee you can be. By the way, have you contacted ADA or JAN (Job accomodation network) to see if they have any advice or words of wisdom for you? They could be two great potential resources for you to help with your job and employer.

I'm sending healing hugs your way ((((( )))))

[Aprilmarie52]

Amy, Hope you feel better soon!

[MightyMouse]

Amy, try not to compare your situation and think you shouldn't feel bad because it could be worse...if it feels bad to you, then it IS bad for you.

Hopefully you'll get some good ideas from your trip to Ohio. You should also know that the xanax (alprazolam) can make orthostatic issues worse because it can have a central nervous system depressant action, making you feel even more sluggish. Again, another not so lovely issue with meds like this is that they help one thing (slow your heart rate) at the cost of making you feel brain fogged, and for me it drops my bp like a stone.

Less than 10 days 'til your visit to Ohio. Remember to make sure to check with them NOW about what meds need to be stopped before your TTT, and how long they have to be stopped. Florinef usually needs to be out of you for 14 days in advance, but Midordrine aka Proamatiine only needs to be stopped about 8 hours prior to the test.

Hang in there! Nina

[AJVDK]

Thanks for all the imput, I am going to call and check to see what meds I should stop before the TTT. They never said anything in the packet of info I got, but there was so much stuff I could have missed it. I will call monday! Dumb question I went to pick up refills on some of my meds tonight and was feeling lighthead so check my b/p and it 103/44 heart 106. Early is was 94/57 heart 81. I run low but not in the 40 range. Do you think it could be the meds? Or just from being run down.

Well hope all is going goos for you all! I am off to bed I am hoping I will sleep the whole night though with all the meds I would hope so! Well hope you all have a great weekend! I am going to try and get some rest. Talk to you all soon!

Amy