fritzp Posted July 27, 2004 Report Share Posted July 27, 2004 hi, I just found this place, I was diagnosed with POTS (but I'm not sure about this, as I have severe tachycardia in supine position/sleep. my pulse is always 150 and above. anyways I feel as if I'm going to die and can not get out of the bed and need someone to talk to about all of this, I'm 22 yrs old btw, this is very scary (especially right now, feels like my pulse might be over 200 and I can't get it to slow down). Quote Link to comment Share on other sites More sharing options...
UnicornIsis Posted July 27, 2004 Report Share Posted July 27, 2004 Hello, I'm 21 and I have NCS and POTS. I have low HR and BP, so I'm the opposite from you. But there are people with POTS who have high HR and BP all the time. Mine is low until I try to stand up then it goes really high trying to pump enough blood and then it goes low again because it can't. That's when I pass out or almost pass out. I've added you to my AIM list for DINET. My screennames are UnicornIsis4 @AIM, UnicornIsis @YahooIM, Luna_Sekhmet @hotmailIM. Feel free to use any of these to contact me. Until I began treatment for this I could barely get out of bed either, and sometimes I couldn't move at all. So I know how you are feeling. Most, to all of us, do. I try not to use the phrase I feel like I'm dying because it puts such a negative spin on things. And believe it or not one of the best things you can do for this is to try to have a positive attitude. It's VERY HARD at first, but it gets easier over time, and it doesn't have to be all the time. Just pick something once in a while and make yourself say something good about it whether you belive it at first or not. My thing was usually thank __(whatever/whoever)___ I still have coffee. I'll write more later, I have to go to a doctor's appointment for this, this morning. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted July 27, 2004 Report Share Posted July 27, 2004 Hi and welcome to the boards! I am 22 years old also, I was diagnosed when I was 19. It is really tough dealing with POTS but this board is a great place to come for support. Have you found a doctor that you feel comfortable with? That's the first step to making sure you have a correct diagnosis. It's definitely not unheard of to have supine tachycardia with POTS, I think most of us have experienced that at some point. As mentioned in the previous post, it is scary at first but things get better with time as you learn to manage your symptoms and modify your lifestyle. I wish you the best and hope to see you here often! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 27, 2004 Report Share Posted July 27, 2004 We understand what you are going through right now. You have come to the right place. Keep posting and asking questions and for support.When my POTS was at its worst, I could barely move and my resting heartrate was at around 100-110--sometimes higher. Standing would bring it up to 160. For the vast majority of patients, there is significant improvement over time. It does take awhile for most people to get better--months or more. Especially if it takes awhile to find the right treatment regime. Hopefully you are being treated by a knowledgeable physician. I agree that, hard as it is, try to stay hopeful and BELIEVE you will get better. That helps so much with recovery from any illness, and this one is no exception. Try reading (if you feel up to reading at all) Dr. Weil's *Spontaneous Healing*. It is a very hopeful book that shows how important the mind is to healing the body. It also includes breathing exercises that help improve autonomic function (so he claims, and I suspect there is truth to it!).You are in my thoughts!Katherne Quote Link to comment Share on other sites More sharing options...
danelle Posted July 27, 2004 Report Share Posted July 27, 2004 Hi, I am so sorry you are feeling so badly. I am a 37 yr old who has had POTS since the age of 18 but only dx just this year. Before taking atenolol my HR would do just like yours. It is one of the scariest things a person can go through. I still have spells when it does that crazy stuff and beats really fast, trips to ER etc. I know people try and understand but noone truly can until they have actually walked in our shoes. Fortunately you have found a slew of us who know where you are coming from and can understand. I don't have AIM (I don't think) or I would write you there. Have you had lots of tests done to determine for sure you have POTS?Please hang in there and try to not be too afraid(I'm the pot calling the kettle black!!) Anytime you need us, please don't hesitate to get on here and post. There is always someone around to talk to who truly understands.I found the most comfort from this site because I finally realized I wasn't alone in what was going on with my body-not only physically but emotionally as well. This site has been a Godsend to me. The support is overwhelming!! Keep us updated. Has your dr put you on something to slow your HR down??danelle Quote Link to comment Share on other sites More sharing options...
Meghan Posted July 27, 2004 Report Share Posted July 27, 2004 Fritzp, I'm sorry that you haven't been feeling well! I am 19 and I have POTS. I was diagnosed in December 2003, but I think I've had it for well over a year now. I know that it can be really frustrating to be sick; if you ever need to talk, feel free to IM me. My AIM screen name is Meg6327.Best Wishes, Meghan Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted July 28, 2004 Report Share Posted July 28, 2004 So sorry that you have this extremely inconveneient, debilitating at times,scary condition. I hope that as time goes on you will experience some improvement, but it is definitely horrible those first few months. I hope your friends and family will be able to bear with you during these difficult times ahead and this forum is so understanding. You will need a good autonomic specialist to follow you, I believe. Keep your chin up--you can do it. Quote Link to comment Share on other sites More sharing options...
blackwolf Posted July 28, 2004 Report Share Posted July 28, 2004 Dear Fritzp,Welcome to the site. Many of us completely understand what you are going through. Again, I have to ask, do you have a Doc? Mabey if we know where you are(name a big city by you) we can suggest a Doc. Or check the Physicians list on this site. Relax and do some slow, even breathing, mabey lay down. I don't know you yet, do you meditate? Many of us do as meds aren't always the best for some of us. I also had a bad time of it in the begining. Someone is almost always on the site and a large group are on AIM. Good Luck, keep us posted,Blackwolf Quote Link to comment Share on other sites More sharing options...
Brwneyedchica Posted July 28, 2004 Report Share Posted July 28, 2004 Hi Fritzp,So glad you found this forum. This is a great place to vent, ask questions and learn how others deal. I'll be 21 next month and was diagnosed with POTS in 2000. My blood pressure and heart rate run pretty high at times though normally not while I am in a supine position and not since I started taking Inderal. It's VERY frustrating not to have an actual diagnosis, or people who understand to speak to. I added you to my AIM buddy list, feel free to contact me as well... my screen name is brwneyedgirly01. Feel better soon!!! Quote Link to comment Share on other sites More sharing options...
POTSHusband Posted July 29, 2004 Report Share Posted July 29, 2004 HiMy wife has had POTS since she was 22. She is now 26 and is marginally better. Try to find a doctor that has had some experience with the disease. If not then find a doctor that will listen to you and do your own research. The people on this board have been a huge resource for me so go back and read a whole bunch of old posts. POTSHusband Quote Link to comment Share on other sites More sharing options...
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