deeplyset Posted June 27, 2005 Report Share Posted June 27, 2005 I just got diagnosed with POTS but I've been sick with it for about 2 years. The worst I get is where I can't sit up without fainting/passing/collasping/going lopping things happing. I'm at that stage again and this time I'm going in and out of consiousness and not breathing even when I'm laying falt. The last two times it got this bad they hospitalized me (because we didn't know what was wrong). I'm frustrated because none of my doctors even really know what POTS is. So it's like the blind leading the blind. I'm not sure what to do, I don't know what is really even happening. I'm just so sick. Is this normal?I'm getting a little better each day since I stopped a new medicine they were trying mestinon. But the progress is really slow and anything is throwing me back flat... I'm just concerned, and don't know who else to ask. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted June 28, 2005 Report Share Posted June 28, 2005 First off, Welcome to the board! I'm sorry you are going through such a miserable time.What do you mean when you say "going in and out of consciousness and not breathing even when I'm lying flat"? The in and out of consciousness I understand but the "not breathing" I don't. How do you know you stop breathing? Are you gasping for air, short of breath or something else?With what you are describing so far I'm wondering if you have been tested for sleep disorders...narcolepsy or apnea which could interfere with breathing.What other symptoms do you have that led the Dr to diagnose you with POTS?Hope you'll be feeling better soon! Quote Link to comment Share on other sites More sharing options...
deeplyset Posted June 28, 2005 Author Report Share Posted June 28, 2005 The breathing is like I'm so weak unless someone reminds me to breathe I'm not breathing. Which I know sounds crazy.Other symptoms: tilt table- collapsed at less than 7 mins. (tachycardia) Heart rate went up to 130 beats per min. (this is the 2nd tilt table last one my heart in 10 mins went to 153) blood pressue wasn't change very much, slowing of the bowels, general weakness, inability to handle heat or coldness (any extreme with anything, noise, people, evornments), slightly anemic, low blood pressure, high blood pressures, lightheadness, DIZZINESS, cold hands, difficulty swolling, abnormal atonomic test, chronic mirgrines, anexity, constipation/diarreha, numbness/tingling, pain all over my body to any pressure (don't ask me what they is), also right after I collapse I can't speak for about a minute or so then when I could back to me speech is slurred... these are just some of the symptoms.I have a history of Myastenia Gravis but I have been asymatic for 8 years. So I know the difference in the breathing and swolling because I've gone in crisis with that before. I'm 23 now. Quote Link to comment Share on other sites More sharing options...
deeplyset Posted June 28, 2005 Author Report Share Posted June 28, 2005 I asked the doctor about sleep apena before because I have a lot of trouble breathing when i'm sleeping too. I'll wake up gasping sometimes. They asked me some questions and said it was anexity. I've never just fallen asleep that I know of in regard to narcolepsy. Thanks for your help Poorbear Quote Link to comment Share on other sites More sharing options...
Poohbear Posted June 28, 2005 Report Share Posted June 28, 2005 Sounds like you have a lot of the same symptoms as many of us on this board. I am truly sorry for that but I hope you can get some answers from Dr's and some support and information from this site!I think I understand what you are talking about now...not necessarily that you completely STOP breathing but it sounds like you are describing very shallow breathing. I too have this sometimes; mostly when sleeping. My advice would be to talk to your Dr and explain that you understand this may not meet the "typical" criteria for a sleep disorder or breathing condition but see if they could try you out on oxygen when you have these episodes to see if it will help. For me, this type of symptom gets much worse if I am really tired or fatigued (beyond my already "bad" baseline). Try to explain to the Dr that with Dysautonomia our bodies are sometimes extremely sensitive to changes and you want to see if oxygen or CPAP machine might help you feel better and improve your quality of life. Quote Link to comment Share on other sites More sharing options...
yogini Posted June 28, 2005 Report Share Posted June 28, 2005 Hi Deeplyset,Welcome to the board and sorry you are having such a hard time. I don't have the same symptoms as you, but I can relate to your frustration. You may want to check out the list of POTS doctors on potsplace.com - maybe there is one near you. Also, there is a lot of good info on the site about meds and treatments. Are you taking any meds right now? Feel better,Rita Quote Link to comment Share on other sites More sharing options...
Sunfish Posted June 28, 2005 Report Share Posted June 28, 2005 deeplyset - i just wanted to welcome you to the board (although i'm sorry you find yourself having to be here!) i'm 25 & also have a large assortment of symptoms that often are quite frustrating, confusing, etc...a lot on the board do. none of us have the exact same constellation of symptoms but i can say that i've heard every one of the symptoms you're describing mentioned by at least one other person on the board. i realize that this doesn't offer a solution, but i know for me just knowing that others "get it" can be helpful. in terms of progress being slow, it usually is...honestly if you're making some progress, at frustrating as the speed (or lack there of) can be, it's still a really good thing. the toughest thing about POTS/NCS/dysautonomias is often their extreme unpredictibility & the ups&downs that come along with them. (since my diagnosis i have been everywhere from playing varsity sports to practically bedridden & everywhere inbetween. ) your comment about the blind leading the blind is very true...in reading the board you'll find that most if not all of us have dealt with a lot of uninformed docs over the years; the med folks often comment to me these days about well informed i am but largely i feel i need to be to keep myself safe!! so...hang in there & browse around the board...both links from the homepage & postings...there is a lot of good info & lots of great people.:-)melissa Quote Link to comment Share on other sites More sharing options...
deeplyset Posted June 30, 2005 Author Report Share Posted June 30, 2005 Thank you all for the help and suggestions...Poohbear- I think your right it is just really shallow breathing... I talked to my doctor about the oxygen and she said that she didn't think I needed it and suggested I breathe into a bag... I've done this before. It takes forever but I guess I'll keep doing that... rqt9191 - I was taking Mestinon but it made me really weak so the doctor stopped it. So now I'm just taking other stuff... You know for migraines, back pain, nausea, gastritis... Nothing right now for the POTS. Suggestions? I've tried Florinef and Midodrine, neither of them really helped. I looked at the www.potsplace.com and the closest doctor is 8 hours away from me... Suggestions??? I'm really overwhelmed by that.I've been so encouraged and even feel empowered in a way by all the information I've gained by reading this site... It has helped a lot... Quote Link to comment Share on other sites More sharing options...
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