Clairefmartin

Has anyone else heard about this "POTS Treatment Center"? I saw the page on facebook and was looking at their site, they claim to be able to help you "recover" from POTS without meds in 10 days with biofeedback. I find this VERY hard to believe and kind of dangerous, but wanted your opinions. I know a lot of us feel desperate for answers and treatment, and would hate to see people taking advantage of that. https://www.facebook.com/POTSTreatment?sk=info http://www.potstreatmentcenter.com/ Thoughts? Experiences? This really bothered me, it seems like a scam. Thanks!

I love all of these! I'm going to compile all the comments and repost at some point. And thanks Julie! She was worth the bed rest nightmare

I have met so may POTS and dysautonomia people on twitter! I love it, didn't think I would. Glad you guys are tweeting. I created a POTS list on there, feel free to use it

There was a recent post on fainting while asleep - I wonder if the two are connected? When I used to drift off while upright (back in the days when I spent more time upright) I would jerk awake with an adrenaline surge feeling. Interesting question. I also would wake up feeling like I was dying on occasion, spinning, gasping for air, almost paralized feeling (like they were talking about in the other post). Will be interesting to see what others say! Thanks for posting!

I'm intrested in this as well - and thanks again Julie, you were very helpful in an MCAD post question I had previously. I just saw the allergist, and he said my symptoms sounded like something MCAD/Mastocytosis related, so I'm getting a whole panel of blood work testing my IgE levels for foods, and a 24 hour histamine/creatinine, Tryptase level, and CBC with differential. I have to look up what all this means. I was interested to see that the doc circled dysautonomia, food allergy, allergic rhinitis, Urticaria (I have no clue what that is), and Mastocytosis on the diagnosis section. He was at Mayo previously, so was very knowlegable about POTS/Dys (thank God!), I really liked him and am hopeful. Anyways, hope you find some answers, I am out there searching too!

Can you get IV fuids? I've had this similar feeling when "dehydrated", or hypovolemic, or whatever it is for us POTSies. Also was having horrible blood sugar swings that did this as well. I can feel my sugar when it is crashing, I have to avoid eating sugary foods with no protein to slow the crash, or I get hot in the face, tachy, head swimming (not lightheaded) almost vertigo feeling. I hope you feel better soon! I had been fairly well for years then my last pregnancy put me down harder than ever - so I know the feeling, it is terrible. Best of luck!

ha!

I'm from Farfax! My family still lives up there. We are near Virginia Beach, about 3 hours southeast.

This was a silly list I came up with, thinking about how to make light of how debilitating and sometimes humiliating POTS can be People have been adding to the list and coming up with funny, great lines - feel free to do so and I'll add them in! http://bellaflorablog.blogspot.com/2011/12/you-know-you-have-pots-when.html

Thanks for the encouraging words. I'm having a tough time, just need to get out of my apartment and not be trapped by these stupid stairs anymore. I missed my son's Christmas musical (his first) at preschool today, it was very depressing. Ive been pretty perky this last year, most of which was spent away from my family in the hospital, reminding myself that I don't have cancer, and I don't live in a hut in Africa with zero health resources, but I'm getting worn out by the whole thing I think. My parents are moving down near to us this spring/summer, that should also help improve things, its been tough dealing without any family. And I am in the process of applying fro disability, it would make a huge difference in eh amount of PT I can do to have someone around to help. On a good note, I saw an awesome allergist today who is testing me for MCAD, and I guess I probably have a birch allergy which causes all the other food sensitivities. I'm getting a bunch of blood work done, a 24 hour urine, the prick skin tests, including testing to see if I'm allergic to the titanium rods/screws in my back from my surgery in '99, since that's when all my issues started. So we'll see! I kinda hope the MCAD comes back positive, because it will explain a lot.

I have nothing to add about Mayo - just wanted to say I hope you get the help you need and best of luck! I'm really sorry you are going through this!

Well, my blood clots seem to be all "resolved". I went to my wonderful hematologist yesterday, and the clots in my arms, heart and lungs from the PICC line of death are all dissolved. I still have a bit of "chronic clot" in my jugular, but blood flow is good. So I get to reduce my lovanox shots to a preventative once a day dose and see how it goes. Yay! Unfortunately though, I am still basically non-functioning. I lay in a bed all day trying to take care of my three month old, who is starting to move more, and I am terrified of not being able to care for her properly. I can get up and take a few steps, and have a reclining wheelchair, but my body hurts and my BP and HR swing wildly, so I'm too scared to do much all day while my husband is at work (my other son is a preschool all day) because I don't want to fall or just wear myself out to the point of being non functioning and be able to care for her. I have a rollator now, which I want to try using in the kitchen and around the house, but by the time my husband gets home I am so tired and shaky and worn out I don't use it much. A year ago I was leading a fairly normal life, even after having POTS and everything else active since 2002. Being on bed rest for 9 months (plus the 3 I've been home from the hospital) really did a number on my previously active body. I miss my life. I think I am morning my old life. I just needed to vent, and see if anyone had any tips for dealing with this. Thanks~~~I love this forum! You guys are the best.

I think you should print out a bunch of journal articles - not stuff off wikipedia or google (there are links found on dinet for research papers) and bring them to all your docs. That's what I did almost 10 years ago, and especially in 2006 when I had a major flare. I also printed all the symptoms of POTS, showed them to my doc. and he said, "yup! looks like you have POTS"

i'm the same way - i've been keeping the house super warm because my Raynauds acts up and my feet and face go nuts in the cold. i think i have hyperpots, so this would make sense.

I actually spoke with the very nice lady there yesterday, and she said to do the best you could and record the results with notes.

Just a random thought regarding the cerebral profusion - have you been checked for a Chiari Malformation or had your corrotid(sp?) arteries scanned? I have this feeling a lot as well, and I always chalk it up to not enough blood in my brain and fatigue. Resting/sleeping seems to reset my body some days, and i will start the day feeling clear headed, but by afternoon, can't think. Very frustrating, I hope you find answers! Best of luck! Claire

The allergist I'm going to next week did his fellowship at Mayo, and knows/tests for MCAD! Yay! My right side of my face has been swelling up/burining/turning red, as well as my chest - and my ear & eye get all droopy/weak feeling....I think its some kind of allergic reaction. I'm excited to get some answers. Thanks again for all your input! Claire

I just sit in the tub. I'm not much for standing at all these days anyways though

Thanks guys, I think if I can just get concrete DXs, I can find local or drive-able docs for ongoing treatment. Hoping Vandi can get me in soon, if not, I'll try to make the rounds to the specialists further away in Virginia. This info was all very helpful. My docs have never heard of what I ask about, it's frustrating.

PS - my other question is if they would test for this when I go to Vanderbilt??? I'm awaiting their call. Thanks!

Rich- http://f1000.com/thefaculty/member/2528824528596204 Dr. Vinik, who every doctor I talk to around here says is the best of the best, and has a full autonomic lab, but he only sees patients one day a week, hence the wait until june. My cardio is pushing hard to get me in sooner, as I am in really bad shape right now and have never had any autonomic testing done besides a TTT in 2003 (positive!). I'm not sure they even had it back then. Anyways, thank you all, I'm going to research all these docs - Richmond and UVA are only a few hours away!

I am on month three of basically being bed/wheelchair bound after a horrible pregnancy that kept me hospitalized/horizontal for almost the entire 9 months. I had to get a PICC line because I was not retaining any fluids and my HR and BP were so crazy, and this caused clots, and that added another layer of complications. I almost died and lost the baby. I was (and still am) so de-conditioned that birth took me 3 weeks to recover from and was the most painful exhausting experience I've had in a while. My high risk OB docs called Mayo, and they said it was a 50/50 chance that things will be ok, or will be REALLY bad, and they offered no solutions. I ended up at Hopkins for a month, where all they did was put me on Florinef, as they felt any other drugs were too harmful to chance taking while pregnant. I had about 4 weeks of feeling better in the late 2nd trimester, but because I was on blood thinners and no one wanted me to fall, I had to stay on bedrest. Would I do it again to end up with my gorgeous and healthy baby girl? Yes! Would I choose to get pregnant again for another child? Heck no! I've been ordered by all my docs to never ever get knocked up again, and one actually offered to tie my tubes herself BUT - with my 1st child, I felt great until the last 2 weeks. Was very active the entire pregnancy, med free, and recovered from birth quickly and nursed for 8 months. My symptoms after that still stayed fairly manageable (that's why I hadn't been on this forum in so long). Now I am back in POTS (and I think MCAD) h.e.double hockey sticks, while trying to manage caring for a newborn. Its the toughest thing I have ever been through, and I've had POTS for almost 10 years, and major spinal surgery before that. SO - I think you need to consider past pregnancies, medications, do you have a great team of doctors (I did not!), and are you willing to risk a full blown POTS explosion while you have 3 other kids to take care of. There is always adoption Lots of babies need homes! Good luck!!

Thanks Julie! I am in South Eastern VA - Norfolk, VA to be specific. The local docs here are not knowledgeable about dysautonomia in general, I've seen 5 neurologists (with no luck)! Thanks again!

HI there! You guys are all so knowledgeable, figured I'd ask what the best type of doctor to see for testing for small fiber neuropathy??? My face and ears and limbs have bee tingling, going numb, and hurting for the last few weeks, and half my face and my one ear especially. It may be vascular, I can sometimes lay on one side and get the sensation to go away, and it seems aggravated by cold temps. I have Raynauds, and it feels similar to that. The docs keep making sure I'm not having a stroke and looking at me like I'm nuts. I'm stumped and really annoyed at this new symptom, I really want to know what it is. I also fit the profile for MCAD, and asked my hematologist about testing for that, and he referred me on to an allergist he thought may be able to help. I'm back in the same loop I always get in, no one here locally specializes in POTS/Dysautonomia, so I get farmed out to a bunch of docs that end up sending me to other docs. My EP submitted paperwork to Vandi, and is referring me to a supposedly great local Endo who travels around the country lecturing on dysautonomia issues - so he can't see me until June. Anyways: anyone know what specialty deals with MCAD and Small Fiber Neuropathy? Thanks!

Wow! Thanks everyone. I'm writing them down