hippychic258 Posted August 1, 2012 Report Share Posted August 1, 2012 So it took us 3 days of driving to get to Texas I am 5 months bedridden so I had to Lay in the back of the SUV it was set up just like my bed. It was an 18 hour drive and I kept getting so sick and felt I should turn around and tough it out ........What a mistake we arrived on Sunday went on MOnday and have been so so so sick went to the ER last night and surprise, surprise they did not know what POts was and did blood work and of course it was normal, anyways all my old symptoms have come back I feel like this has reversed all my progress. Now that I am here I am to sick to go to the treatment center, and I have no idea how I am getting home I can't make the drive again. I thought I would leave here feeling better but actually i am going home sicker than when I left. My question is has anyone traveled in a car a long distance during a flare and did it set you back? Is there anything I can do?Thanks Quote Link to comment Share on other sites More sharing options...
McBlonde Posted August 1, 2012 Report Share Posted August 1, 2012 Oh my goodness! I am so sorry! Is your appointment with Dr. Suleman? Quote Link to comment Share on other sites More sharing options...
angelloz Posted August 1, 2012 Report Share Posted August 1, 2012 Early on I could handle car rides, even a 13 hour one to the Cleveland Clinic. Now I cannot handle a short car ride. Don't know what is going on...motion ,position, reacting to something????? I know you must eel so sad thinking you were doing something to help yourself and now feeling worse. Could it be a reaction to the stress of change??? Let us know how your doing.Angelloz Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 1, 2012 Report Share Posted August 1, 2012 Why not show up at the doctor's office in your worst condition? Maybe the doctor will seriously get to the bottom of it. I'd like to know who's clinic this is, too? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 1, 2012 Report Share Posted August 1, 2012 Travel always makes my symptoms worse. Hopefully you can get back to your baseline in a number of days or less. Could they give you fluids at the ER at least? Hopefully you can get to this clinic--I do agree that being seen when you are at your worst has advantages. Is this the clinic that uses biofeedback? Presumably there is a doctor there who can be consulted? Quote Link to comment Share on other sites More sharing options...
McBlonde Posted August 1, 2012 Report Share Posted August 1, 2012 I agree! The POTS Treatment Center will be able to see you with your symptoms at their worst. They would HAVE to be your best option as to what to do, right?Also, one thing that makes me better or worse when I am traveling is where I a going..... I have no idea why, but my symptoms are always better on the coast in Florida. I can leave La. feeling at my worst and actually feel better by the time I get there. On the other hand, traveling back, I feel good, can breath deep, etc. in Florida, but the closer I get to home, the worse my symptoms become.I don't know where you left from, but if you came from somewhere like the West Coast to the hot humidity of TX, I can see how that is a possibility of making your symptoms worse.I hope the treatment center gives you an IV asap! Quote Link to comment Share on other sites More sharing options...
roxie Posted August 1, 2012 Report Share Posted August 1, 2012 There are a few dr's for pots in the Dallas area. You can ask them at the treatment center or try yourself but there'sDr sulemanDr eichhornDr Levine Quote Link to comment Share on other sites More sharing options...
hippychic258 Posted August 1, 2012 Author Report Share Posted August 1, 2012 Before I left I was able to sit to go to the bathroom and not have any symptoms now just sitting for that amount of time I get the nausea and dizzy and feel like I am floating.I made it to the pots treatment center the first day it was not what I expected it was a small office on the 10th floor of the building and the actual name on the door was Pain management or something like that everyone there was really nice there was Dr kaprianuo and 2 other girls that worked there. They said had to sit in a recliner the best position for pots patients I told them I would try but I didn't think I could so I tried and it lasted about 2o min and I started to feel sick so they moved me to a couch ( they are not set up for bedridden patients) so we did the consult in her office so I could lay in the couch. then she wanted me to come back in an hour for a group educational session so back down we went to the car and waited an hour and went back up (my husband has to carry me I can't even sit in a wheelchair) again I had to get in the recliner 30 min major episode shaking nausea dizzy feeling like I am going to collapse moved back to the couch the Dr. tried to have me do a breathing exercise but when i am in that state I cant focus on anything so we left went back to the room and have been sick ever since (this was monday). She is a BIo Physiologist and I think she is an expert in Biofeedback not so much a pots expert at least no for my extreme case. The way it was explained I think it can help but you have to be well enough to do it and if I was feeling that good I prob wouldn't go there. As for being a Pots treatment center its not what I expected. But I am sure they have helped many people. I wish I could go again and see what else they do. Quote Link to comment Share on other sites More sharing options...
issie Posted August 1, 2012 Report Share Posted August 1, 2012 Maybe, try to see some of the other docs that are there in that area - while you are there. At least, give them a call and tell them you are there and how bad you are and see if there is anything they can do for you. Hope you feel better. It's horrible when the symptoms are sooooo bad. I have to take some meds to help with motion when I travel. I will use "Motion Mate" by Hylands that is a homeopathic product and it helps with the nausea for me. I also take a muscle relxr and something to calm my sympathetic system down. If I fly for sure I use these things. But, riding in a car - gets me worse - you feel the motion more.Issie Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted August 1, 2012 Report Share Posted August 1, 2012 Call Dr Kyprianu and tell her you want an appointment with Dr Suleman. She worked with him for years and can get you in with him very quickly. I wish I would have seen him while I was there. I also hated the fact that it was on the 10th floor! There were some days it was difficult for me to stand and wait on the elevators and ride it up so far. My symptoms were aggravated while I was there just from the stress of being away from home, but I wasn't in the shape it sounds like you are. I'm sorry . What a miserable feeling. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 2, 2012 Report Share Posted August 2, 2012 It sounds like you need to be seen by a medical doctor at the moment. Quote Link to comment Share on other sites More sharing options...
hippychic258 Posted August 2, 2012 Author Report Share Posted August 2, 2012 Thanks for the advice I hope to make it there tomorrow. AShelton80 what results did you have with Dr Kyprianu and how are you doing now? Quote Link to comment Share on other sites More sharing options...
gackedo Posted August 2, 2012 Report Share Posted August 2, 2012 Try to get an appointment with Dr Suleman. His office has the ability to give you IV fluids in his office. Quote Link to comment Share on other sites More sharing options...
hippychic258 Posted August 2, 2012 Author Report Share Posted August 2, 2012 Is Dr Suleman an Neuro or cardio Dr? Does he specialize in Pots? Quote Link to comment Share on other sites More sharing options...
McBlonde Posted August 2, 2012 Report Share Posted August 2, 2012 Cardiologist with a special interest in dysautonomia http://www.theheartbeatclinic.com/servicesoffered.php Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted August 2, 2012 Report Share Posted August 2, 2012 I'm doing ok at the moment. No where near where I would like to be or where I was last summer. I can drive short distances and eat at restaurants, but that's about it. No shopping or anything that requires standing for long periods of time. My results from the biofeedback were lackluster, but everyone is different and I don't want my experience to influence yours. I am currently still doing the at home breathing equipment that she will give you. I still believe in it enough to keep practicing it although I haven't seen a huge benefit. I do feel my sleep is better and my IBS is better. Mayo and Dr Suleman recommend it, so there has to be benefit. Good Luck to you and hope you get some answers and improvement while you are there. I just had to keep telling myself the whole time I was there that I could do it. Quote Link to comment Share on other sites More sharing options...
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