Clairefmartin

I'm going to ditto everyone and say find a new doctor!!! We really need an educational pamphlet put out by Mayo or Vandi or Dr. Grubb or something standardized to take to these doctors! I wonder if that exists? I print out medical journal stuff to bring to my appointments - but it would be nice to have a standardized one with references listed and contact numbers. I feel your pain - I usually get blank stares, and I have a Dx Good luck and keep trying!!!

Wow Serbo - you are my new hero! That's hard core!

I'd like to hear thoughts on this too - I'm supposed to get scoped as well, I think my esophagus is fried and they need to check the pH of my stomache, but I'm scared of sedation and being put under. Sorry to offer no help, but know you are not alone

PS - the doc also said my pupils were not dilating. Any thoughts on this? I have all my testing scheduled a week from now, including a new MRI to compare contrast vs non- contrast (and contrast makes me sick!) to see blood flow to my brain. I'm freaked. Then I have to wait until Feb16th to get results or next steps. I'm assuming if something is really really wrong, they'll let me know sooner? You'd think I'd be a pro after almost 10 years of this - but I'm freaked!

You are making this sound like a fun drug to try! Thanks for posting, I hope you keep feeling good!

We are doing this! Contacting a bunch of media and creating a POTS awareness week. Have let DINET know about it, its in the planning stages, and we hope to get the word out to the public and doctors. I feel especially bad for the teenagers going through what I went through (and still am) and it needs to stop. I and some of the other folks involved have media connections and are using them!

Ha! I'm going to have to add these and repost a new list!

He's supposed to be great. Glad you are seeing him. Best of luck!!

Look into seeing Dr. Rowe at Hopkins, he's a pediatric specialist! Also check out the DINET list for other specialists in your area. Don;t loose hope, keep going - you have a legit disease!!!! I"m so sorry you are going through this, I can't image.

Hahahha, good point, but he does love the POT, and we have POTS....so it may just work I'd overlook his swearing for a celeb that famous getting the word out! I really want to get my husband's students to do a funny video version of this and put on funny or die or something like that. I'm working on it!

I agree with Katy, the full on real TTTt will reveal your BP issues, and it's worth it! Then find a new doc! You do not deserve to be brushed off. Also, maybe print out some articles to bring in to your doc or the ER, there are loads listed on dinet. Not google or wiki stuff, but medical journal articles. If you need help finding some let me know. Good luck!

I'm feeling this way too! I eat, and am starving 1/2-1 hour later. I have been blaming it on emotional eating, but my docs yesterday thought it was something more. I mentioned gastropareis, but they seemed to thing some sort of adrenal deficiency was more likely. We'll see. Feel better!

Thank you everyone! Your posts were all so informative (as always!). ANd Naomi - I thought the same thing! This is Dr. Vinik - he used to be listed on the Dinet list, but isn't there anymore. I am so glad he saw me, they have an entire lab devoted to autonomic testing, and he really seems to know his stuff. Potsgirl - He is working in conjunction with my EP, but they apparently saw some things that made them want to review all my echos just to double check, because my EP knows about POTS, but is a self professed "non-expert", which I appreciate, he is the one sending me to others he thinks can help more. And he reads all of Dr. Grubbs publications Oh and I had a clot in my heart as well! It was 2 cm in my right atrium, took 6 months to finally resolve. I'm down to a low dose of Lovanox because I'm not moving around much and I had so many DVTs and PEs, they don't want any repeats. Thats what really took me down during pregnancy and forced me to stay in bed and get this deconditioned, clots are the devil! And Sue - thank you for the breakdown, I apparently do have that discoloration on my neck, and this doc specialized in diabetics dealing with autonomic issues, but my blood sugar is never over 140, so I'm a little confused as to why they are concerned about diabetes. I have gained a bunch of weight and am craving carbs (but I've been chalking it up to emotional eating - not leaving the house in a year makes GF brownies a small bit of heaven). In reality, the thing that concerned me the most were the mention of tumors, diabetes, and the brain vascular flow issue. It would explain a lot though, and getting a Dx would be a relief. I plan of having tissues handy at all times for the next few days. And I have to go get allergy prick testing on Friday, which I am nervous about...with me being so tachycardic, if I react and need epi - I get nervous about my heart rate. But they know all of that, and said its more important to breath - which I agree with!

Thats great!!!!! You never know......

Well, I finally made it to a doctor who does autonomic testing! In the almost 10 years of having POTS, I have never had this done, and only in the last few moths have started working with Doctors that know anything about POTS/Dys and have all said, "we need to find out what's causing this". This is such a nice change to the normal local experience I have had for a decade - blank stares, and clueless frustration. Anyways, I saw an endo who was VERY nice, his PA did a thorough history, and they did some quick orthostatics. My laying (with no resting) BP was 143/85 - which is WAY high for me, sitting was 134/80, then I had to lay back down because I felt like death, and then stood up and my BP was immediately 100/65. My pulse of course shyrocketed with each position change as well. The weird thing is, my BP is nromally low laying, then higher when I stand, then it crashes and I start passing out. Pulse always high when upright. So I am getting a full autonomic work up, plus they are a few other things that they found during the exam and will be testing for - if anyone has any experience with these I'd appreciate some input, I'm pretty freaked out. I'm so used to being told everything is fine and I just have POTS, that getting this list of possible issues scares me. 1. Pretty sure I have mast cell issues going on (my allergist had previously thought this as well), but they want to check tyrptase, histamines, and possibly gastric pH. 2. discoloration on my knuckles and skin indicated cortisol issues, also checking ATCH 3. I've had issues with my right side of my face (I posted about it on here perviously), and in general my entire right side is weaker than my left (started after I had spinal surgery). They think I have "vascular flow issues" with my brain/face, and I need a new MRI. Also to check for a Chiari. 4. Thyriod (runs in my family, but I always test fine) 5. They want to double check all my echos for mitral valve prolase from other docs, even though it's never come up. They said my ejection rate was 60-65%??? I need to look up what that means. 6. They are doing loads of blood work to check for tumors on my pancreas and adrenals, and a neuroendocrine tumor? another one i need to look up. 7. Also checking again for Diabetes, I have hypoglyemic issues and they are concerned and want to know why. Again - I have been tested over and over for this, but they seemed concerned. Something about my skin issues was a sign of diabetes, I should have written it down! 8. Autoimmune testing - not ANA's, but other stuff, again - should have written it down! 9. Classic panic disorder (duh, I was so anxious about this exam) So I'm pretty overwhelmed, but happy someone is doing something. I really liked this doctor and the staff, so I am actually still hopeful. I have major doctor let down baggage. I hope we can figure out whats going on! I have been homebound for over a year now and am ready to get some functionality back. Any thoughts welcome. I may have just needed to vent. I came home and cried, I'm really freaked out all combined with being happy at forward movement in figuring out whats causing my POTS. I'm a hot mess! Minus the hot part Thanks!

Ha! love these!

I had first attack while in the Keys after diving for grad school research (setting up underwater research site). Was also taking exercise supplements with effedrine (didn't know of danger back then), had major dizzy/tachycardic episode that lasted about an hour. Almost passed out in my sushi (good sushi in the Keys!). Stopped supplements that day, but attacks continued and increased, went to ER and cardio, had TTT with increase of 45 bpm, but was told I probably had "overactive adrenalin", "orthostatic intolerance", and anxiety (no history of anxiety/depression). Had to leave grad school, waxed and waned, but managed to function fairly well. Then had major flare and had to leave teaching in 2006, and got formal POTS dx. Same waxing/waning....pretty normal life, then BAM, got pregnant with 2nd child almost exactly a year ago and was hospitalized. Haven't left the house since except for doctor/hospital. Truly and thoroughly disabled now for first time.

Issie, what about contacting the nephrologist in this article: 'Every step is a battle’ The disease: Postural Orthostatic Tachycardia Syndrome, or POTS I'm going to my first Endo apt with a POTS Specialist name Dr Vinik next week, so this was a great thread to read, thanks for all your hard work. Claire

I went through a similar situation, my first pregnancy was normal, second was a nightmare. I posted a bit about it here (and on my blog, link is in signature): My baby ended up being born healthy, but I was on bed rest the entire pregnancy and now 4 months later I am not functioning and in the worst flare of my life. My advise would be to go with your gut about meds - everything is based on anecdotal doctor experience (no testing is done directly on fetuses- thank God), so you have to do what you are comfortable with. I had to fight the doctors on Midodrine locally, my docs at Hopkins said absolutely NO, that only Florinef was safe, and my local docs really wanted me to take it, and still do. I am waiting to try it until I stop nursing. I took Florinef from about 14 weeks till she was born at 38 weeks, and then came off because I was retaining fluids naturally from nursing. My most wonderful treatment to get my BP up and then at he end to keep it stable were IV fluids. Just be careful if they want to put in a PICC line or port, as you are more prone to clots when pregnant. And keep moving when you can - the de-conditioning has been the hardest to recover from for me. Congrats and hang in there! Fell free to message me, I just went through the same thing! Claire

Dani - I'm interested in what you mentioned, about people on their site not being as educated about POTS. That was my concern, that this company could be taking advantage of people without the medical/science/knowledge background that many folks on here have - and it could be just a ploy to make money. There is a certain person who claims that Lyme disease causes all POTS, and he posted it on a group on FB, and I watched the thread of young teenage POTS patients get all excited that they had found their answer and cure through antibiotics. It reminded me of that. I may contact them and ask for success rates and numbers, its not like I have anywhere to go these days (I'm fairly bed bound right now ).

Thanks all! And Julie - I've really been in touch with my inner thug lately... Rama - I would love that! I really do have this vision of hot chicks lounging on couches and dancing (slowly or seated) with rollators. I met Pharrell once at the high school I taught at (he's from my city), and my husband knows the guys who DJs for NERD, so I thought about trying to contact him....POTS needs a spokesperson, wouldn't it be awesome if it was Snoop and Pharrell? How funny. One can dream big I guess!

I'm with Firewatcher too, I just don't like the language, and don't want to hear doctors saying - Oh look, you can do breathing techniques and be better. I still have nurses/med professionals try and blame my surges on stress alone, and I have a solid diagnosis, and surges happen when I am completely unstressed and resting, laying in bed. Deep breathing helps a bit, but does not "cure" anything.

I hope you document and report all of that, to the clinic and the state board. Doctors take an oath to do no harm. Letting him act that way unchecked will allow him to do that to another patient. Its very shady that he tried to pretend you were never there, but his staff witnessed everything. So sorry you went through that, its hard enough dealing with being ill! I was so angry reading your post. Unbelievable.

That was my thought as well. I guess I'm skeptical about claims this extreme, but if something makes you feel better, great. But if it works that well, why isn't it offered as insurance covered treatment, or any journal articles about it.

I had a few people respond to my "You know you have POTS when...." with the phrase Drop It Like Its POTS. So here's another completely silly post. Enjoy http://bellaflorablog.blogspot.com/2011/12/drop-it-like-its-pots.html