roxie

You're in your early 20's right Jangle? When I went to see him he said he takes research patients till 28-29

Goodness, it's to be you all cant be in NY with Dr Stewart working on this!

I hear ya! Everyone else has given great advice. One other thing my nutritionist told me is to only drink room temperature water. Cold water takes energy to digest.

Ginger, my dad's mom was real sweet like that too.

Aww, that must've felt awful, Ginger. For some reason stretch marks popped up on my lower back when was like 14 & it's so strange bc I didn't gain weight or grow, they just appeared. I had a day when my family was on vacation and I pushed myself to go to the pool. Well ofcourse someone points out "what are those purple lines on your back" that's not nearly as harsh as your MIL Anywho, stretch marks are a sign of EDS. My mom was researching it not look ago & she said she was look at skin pictures of people with EDS & said they look just like my back

Yes & no. My dr says something similar "PotS is a syndrome. A collection of symptoms with different causes" BUT he also acknowledges that sometimes it's idiopathic. He said that idiopathic forms tend to improve over time.

Sue, I'm trying really hard not to hate you right now. Lol, I'm joking. But I've never had a baby and I have stretch marks on my lower back & some on my legs with absolutely no idea where they came from? For me, it may be EDS

Have you had a gastric emptying?

Yes, but.... I know you guys have been talking about this. I haven't really been able to keep up with it all though. Not feeling so great lately. Anywho, a while ago like 2002 maybe? I went to see Dr Stewart. He did a TTT said I had low-flow POTS. He was taking to me and it was hard to follow bc ya know I just had the TTT. At the end he was taking about getting my plasma-renin and angiotensin 2 tested. He didn't want to do it that day though so he sent me home (4 hrs away) wait a script to have it done by me. I did but when I went there the lab didn't know what it was and had to look it up online. My had also researched it and was asking them if they were going to take specific steps with the blood. I believe it has to be spun w/in a half hour & then frozen- don't quote me on it but something special has to be done to the blood! They told my mom no and not to worry, it's their job after all. A long time went by and didnt get any results so we emailed him & we got a one-liner back that said "no abnormality found" Part of me wonders if I was even tested properly??? But dr Stewart hasn't been helpful since then. I think he's very intelligent though

I used to have problems like this too.what has helped the most is being dairy free. I learned about it from Mack's mom's posts. You an search "dairy" and probably find them.

It DOES take 100% concentration. As i do it more, its easier to get into concentration mode,though. I think I will have to continue practicing after the program is done and that's fine with me. There is a computer program that can be bought & taken home! Actually, what the biofeedback person has me doing at home is note all that hard! She has m e doing "homework" twice a day- before I get out of bed & before I go to sleep. I like doing it before I go to sleep! Then, when I'm having particularly bad symptoms, I stop & work on getting my breath right. The thing with this again though is that it has to be practiced. It's one thing to feel sick & stop when you are alone but when someone talking to you there's a learning curve to get it down (I'm still learning) As it is, right now, it doesn't eliminate not feeling well but it sort of gets me into a zone and relaxes me. I'd rather be relaxed than tense if nothing else. It takes commitment, that's for sure!

Kirsti, is that only the breath pacer or will it also track your coherence levels?

have anyone ever tried peanut butter and pickles? I LOVE it, even thought it sounds strange. I've eaten it for years and not long ago I convinced my mom to try it. Her first few bites these was making all these facing but by the end of her sandwich she was like "this is really good" the next day she had another and it's becoming a staple for her too

I just tried hummus for the first time a few weeks ago! I got it from Whole Foods. It was Kalamata and artichoke hummus. I loved it. Especially with salt, then it really came alive! I agree with Julie, mg is great

Haha, that's my afternoon "happy hour" drink I don't think my stomach could take it first thing in the morning. My nutritionist told me last week to try salting my coffee. I forgot about that till now. Must give it a try

Oh sorry for not explaining better! When I was hooked up to the heart rate & respiratory coherence machine. It was saying that my breathing & heart rate variability were only working in sync 3% of the time

I don't know how low my actual body temp drops. Im assuming the temp in your mouth is different than the one on your hand in biofeedback. But people always tell me I'm cold to the touch & I personally do not feel cold. I've always figured it's a dysautonomia thing

Definitely, it's hard to breath like that for 24 hours! I think with regular practice we'd naturally breathe that way more often but I'm sure not 100% of the time Some insurances pay & some don't. My insurance is only paying part. There are biofeedback devices you can buy online. I don't know how truly effective they are though

A few weeks ago we had a discussion about biofeedback and if it can help or not. My dr recommend this as a treatment for me and referred me to the POTS Treatment Center in Dallas. I trust him so I was happy to go even though I didn't understood how it would work. He told me it's to help control my heart rate through breathing. Then, I saw the thread and it created even more skepticism: So I decided to do my own research and I was surprised to see there is a lot of science that this is a helpful treatment and some of the best dr 's recommend it! I came across this page from Dr Grubb's book "Syncope: Mechanisms and Management" on google where he lists it a noninvasive treatment: http://books.google.com/books?id=Kdi0jhcRyEMC&pg=PA219&lpg=PA219&dq=dr+Blair+grubb+biofeedback&source=bl&ots=hqB1ggnr2O&sig=DQadqn2kk-NjPCk2UXa_pjMfgZo&hl=en&sa=X&ei=VUcjT-XGMcO8twfU69UC&ved=0CGMQ6AEwBw#v=onepage&q&f=false As well as this article where he mentions it: http://circ.ahajournals.org/content/111/22/2997.full The idea behind biofeedback is to level to sympathetic and parasympathetic nervous systems through diaphragmatic breathing and other physiological methods, which in turn calms the autonomic nervous system. It also works to improve heart rate variability and respiratory coherence. By getting our respiration and heart rate in coherence our bodies simply work better! Before I started I would've said that heart rate variability is our HR swings but it's not! HRV is one of the most basic indicators of autonomic dysfunction and stress. It's commonly checked in autonomic testing: http://www.biocomtech.com/hrv-science/heart-rate-variability-basics HRV and biofeedback in patients with heart failure: http://www.bmedreport.com/archives/6234 From there I wanted to see if there is any connection between HRV & POTS. When I googled it I found this study from Dr Julian Stewart that shows marked HRV deficits specifically in low-flow POTS and it's affects on exercise tolerance: http://www.nymc.edu/fhp/centers/syncope/exercise_intolerance_pressor_reflex.htm All in all, I think it's a viable treatment option. I do not think that it is a cure and like everything else it will work for different people to different degrees. As to the POTS Treatment Center, I've been through 5 sessions. I think the language on her website is meant exactly as she says "an effort to encourage other POTS patients" The whole office is very into the power of positive thinking. She wants others with POTS to know its possible to have a better quality of life. She has never said I will be cured. So far, I have seen some improvements I was told it will take a series of treatments nit I am already sleeping better, my headaches are lessening, and my charts from the sensors are showing improvements. They hook you up to a few sensors: An EMG to see muscle tension. Keeping our muscles tense will draw blood from areas that we need it. Hand temperature sensors: this one is interesting. Hand temperature is an indicator of peripheral blood flow. During the sessions we work on increasing peripheral blood flow to the hands which will in turn warm the up. My first day there they hooked me up and it said my hands were 71 degrees. A normal hand temp is 95, ideal is 98-100. She looked at me and said "you get migraines don't you" I guess cold hands shows headaches. Anyways, in my 5 sessions so far we have worked on it. At first it was hard but very slowly my temperature did raise! My last session my baseline temp was 79 degrees and through my last session we got a few minutes at 90! I've been working on it at home and it is raising my all around hand temp. The last thing we work on is heart rate variability and we work on breathing patterns increase the strength of our heart and regulate the variability which will in time help us slow down our hearts when they are too fast. This is another thing that's a challenge. Seriously, I was thinking "how hard is breathing" but it takes a lot of concentration! When I was first hooked up, my coherence was only 3 % in the 15 minutes they were recording it.The dr just looked at me and said "this is not good". After 5 treatments and working at home I was able to get 55% coherence. I'm hopeful that I'll start seeing more improvement as time goes on and feel that it's a visible treatment option for us, especially those that don't do well with medication. Anyone who can't go to biofeedback may benefit *as other said in the post before * a consistent deep breathing & relaxation practice at home. There's a lot of info of how to do it online and YouTube, someone suggested Dr Andrew Weil talks about?

This is a stumper. It's really hard to find the perfect place. There will always be something. I just moved from NY state where we had horrible winters to TX where the winters aren't bad but summer will obviously be a bear. There's always something somewhere Have you thought about calling the dr in Hawaii to see if you could get a feel? Maybe the same with Vandy? Ask if the offer follow up & would look to see if there's other things than POTS going on?

I feel for you, this is a tough situation. my brother is a marine & they tend to have bases in yucky places don't they? Have you thought about the base (don't remember the name) in Fayetteville, NC? Winters do cool down but summers are hot. I believe there are a few dr's in Raleigh/Durham on the dinet list. You could get testing at Vandy & follow up from one of the RTP docs, possibly? For that matter that could work for any base relatively close to TN & NC

I don't think anyone is doubting Dr Levine that exercise is helpful. Every single good POTS dr recommends it. I think people are bothered that he calls it a cure, says it started by all of us being conditioned, and inists on us all stopping meds & starting at like 45 mins. Most POTSies need more care than that. It seems like we've all become skeptical of anyone who presents a cure all and lumps us together. We know that POTS is a syndrome AND has difference causes so we need individual treatment

I was very athletic for my age. When I got sick I was 12 but had always been super athletic. I got sick at the end of soccer season. The school I went to did that presidential physical fitness test stuff. I ran the fastest mile the ENTIRE school system seriously, i beat 12th grade boys. My miles were consistenltly under 7 minutes.

Does anyone know of any good Ipod/Ipad apps (pref free) to keep track of symptoms and exercises/activity?

Wait, I was wrong ANSAR test would show HRV. Sorry I'm foggy today