sandra claus Posted July 1, 2010 Report Share Posted July 1, 2010 Hi everyone, this is my first post and I've not introduced myself yet...I checked with the THRIEEM Pots registry re. the exercise program today because my cardiologist had not gotten a response to his e-mail last Friday. I got a response that said the gal who has e-mailed previously is on maternity leave and the registry may not be attended while she is gone (until September). Has anyone else had a recent response?Thanks,Sandra Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted July 1, 2010 Report Share Posted July 1, 2010 Hi everyone, this is my first post and I've not introduced myself yet...I checked with the THRIEEM Pots registry re. the exercise program today because my cardiologist had not gotten a response to his e-mail last Friday. I got a response that said the gal who has e-mailed previously is on maternity leave and the registry may not be attended while she is gone (until September). Has anyone else had a recent response?Thanks,SandraThat would be Tiffani, and I think you just missed her. We talked to her about a week or so ago. I am sorry to hear someone will not be attending the registry in her place. I know they are very research oriented and only see a few patients per month. There are some wonderful exercise recommendations on this forum. Maybe you can start slowly with recumbent exercises and swimming (if you are not a faint risk), until the registry is up and running. I also wanted to participate, but you must be off all medications, so I was disqualified. I still pursue my own exercise training after tips from my doctor. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted July 1, 2010 Author Report Share Posted July 1, 2010 I heard from Tiffany on 6/22, she didn't say anything about maternity leave - I hope I don't have to wait until September! Thanks for the heads up. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted December 15, 2010 Author Report Share Posted December 15, 2010 Just an update ... I finally got my testing and paperwork done and I qualified for the study! I should be starting in a few weeks. Quote Link to comment Share on other sites More sharing options...
POTSdad Posted December 16, 2010 Report Share Posted December 16, 2010 My daughter had to be off the program for a few weeks (for various reasons). She just restarted the program again from the beginning. She was encouraged enough the first time around, that she wants to do it again.My daughter also started taking florinef 2 months ago, and the results have been AMAZING! (see my post under Florinef thread)However with my daughter taking Florinef, she can no longer be officially part of Dr Lavine's study. But that won't prevent her from following the exercise protocol, it's just that her data won't be included in the study. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted December 30, 2010 Author Report Share Posted December 30, 2010 an exciting update: I received the exercise protocol today and I start on Monday Quote Link to comment Share on other sites More sharing options...
sue1234 Posted December 31, 2010 Report Share Posted December 31, 2010 Good luck and keep us posted! Quote Link to comment Share on other sites More sharing options...
MontanaKimberly Posted December 31, 2010 Report Share Posted December 31, 2010 I am enrolled and starting on Monday as well! I really hope it helps. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted December 31, 2010 Author Report Share Posted December 31, 2010 I am enrolled and starting on Monday as well! I really hope it helps.Hi Kimberly,I'd love to know how you're doing. I'm really excited but a little nervous. Keep me posted!Emy Quote Link to comment Share on other sites More sharing options...
radiohfan23 Posted December 31, 2010 Report Share Posted December 31, 2010 Good luck with the protocol. I'm going in to get the 10 min standing test done at the end of the month. Please keep us posted on your progress and I'll eventually do the same. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted December 31, 2010 Author Report Share Posted December 31, 2010 Will do! Quote Link to comment Share on other sites More sharing options...
jem15 Posted January 3, 2011 Report Share Posted January 3, 2011 Does the THR-IEEM-POTSRegistry@texashealth.org email still work? Maybe they're backed up with the holidays but I emailed almost 2 weeks ago and havent heard back yet.. just curious if they changed the email to contact for info.. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted January 3, 2011 Author Report Share Posted January 3, 2011 Yes, that email still works. They sometimes get back to me immediately, other times it takes a few weeks, or even up to a month. I originally emailed them in June and am starting the protocol today - it took me quite a while to get registered but I don't think that's the case for everyone. I'd send a polite "just checking in" email every week or so if I were you just so you don't get lost in the shuffle. Quote Link to comment Share on other sites More sharing options...
jem15 Posted January 3, 2011 Report Share Posted January 3, 2011 ok thanks, ha, just heard back from them today.. And wow, people weren't joking, it does sound hardcore.. she said you "start" with 50min, 3x a week, plus the 30min strengthening. i've currently been trying to push thru 30min total on the recumbent bike, but adding the extra 20 for warmup/cool down will be a lot.. plus i'm guessing you have to do it fast, if you heart rate has to be in a certain range.. what I do already, makes me worse, so who knows what'll happen if i try to commit to this program. I'll run it by my doctors and get their opinions on it.. i'm curious if they've heard of it and their take.. so doctors tell me to not do as much.. this one seems to be about doing more.. Oh, one other question, I dont know if you know the answer yet.. but did it say where it progresses to? like all the equipment needed , etc... cause i cant get out to drive.. so having to go somewhere 3x week will be really tough.. but i do have a recumbent bike, leg weights, and arm weights at home, so i'm wondering if that would be all i need?? Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted January 4, 2011 Author Report Share Posted January 4, 2011 I was apprehensive at first too because of the idea of a 50 minute workout looming over my head but since you work out in a heart rate zone that is created just for you, it was not difficult at all. I was able to talk through the whole thing. The warm up and cool down are nothing to worry about. They say you may feel worse in the first month but then progressively better. I'd tell Tiffany what machines you have and she might be able to customize your workout schedule around what you do have. They are big on rowing machines which I'm thinking about buying one, they go for around $100 used on craigslist. Best wishes! Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted January 4, 2011 Author Report Share Posted January 4, 2011 I would say you would probably need to get to a gym 1-2 times a week to do the weight machines and any other machines you don't have at home, but maybe they will make you a specialized program just for you if you tell them your limitations. I hope it works for you! Quote Link to comment Share on other sites More sharing options...
jem15 Posted January 4, 2011 Report Share Posted January 4, 2011 thanks, i'll give it a try explaining my situation. we'll see what they say.. Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 5, 2011 Report Share Posted January 5, 2011 Hi,I'm going to my POTS physician next week, and I'm bringing the contact info with me. I, too, am interested if I can participate in this POTS exercise protocol. I've just joined a fitness center, so the timing is perfect. I also own a heartrate monitor, which I suspect needs to be worn by me to keep my heartrate within the target range.I hope my doctor is open to doing the inital contact, and doing the preliminary testing and follow-ups.I have just received my first email from Tiffany (THRIEEMPOTSRegistry@TexasHealth.org)and will pursue this.I intend to keep people on this forum up to date on my progress if I enroll in the program.ETA: The only thing that has got me scratching my head is that I was working out and in okay condition when POTS struck full force?! Also, I vaguely remember someone on this forum in the past who was a member of the armed services (IOW, in great shape), when POTS struck?! Maybe this protocol is geared specifically to us? Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted January 8, 2011 Author Report Share Posted January 8, 2011 So I finished my first week of the exercise program! It went really well. I've had POTS for over 4 years and for the first time I feel like I have some control over making a difference in how I feel. Every time I go to the gym I tell myself I'm one step closer to being back to the old me. The exercises on the protocol are much less difficult than I imagined. I thought I would be dizzy and passing out, with a big post-exercise crash but I have felt great all week. So far I would totally recommend giving it a try to anyone who can. If it doesn't work for you, you can just stop it and try something else Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 9, 2011 Report Share Posted January 9, 2011 I just finished reading the entire article as published and I have questions and concerns. Granted the study size was small, but they found NO autonomic abnormalities during their ANS testing other than tachycardia. They excluded a patient with EDS, citing a link between connective tissue disorders and abnormal heart size. Patients with confounding conditions that were found during the course of exercise were excluded...It appears as if they were almost looking for the deconditioned who were MISdiagnosed as having POTS. They did mention a smaller heart as a predisposing factor in developing POTS though. Have any of you EDS-POTSys been accepted into the larger study pool and given the exercise protocol?Have any of you with abnormal autonomic responses been accepted?I will probably apply for the protocol since two years of Pilates has not done much to drop my HR or BP and things are wonkier than ever. I just remember back when I was in awesome shape and still couldn't run down the block...I'll let you know what they say. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted January 10, 2011 Author Report Share Posted January 10, 2011 I don't know of anyone with EDS who is in the study but I don't think they would exclude you for it. I would give it a try - you can always drop out of the study if it doesn't work for you. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted January 25, 2011 Author Report Share Posted January 25, 2011 I started week 4 of the program and am still keeping up. Last week was difficult all week but yesterday I felt back in the rhythm of things. Quote Link to comment Share on other sites More sharing options...
jem15 Posted January 25, 2011 Report Share Posted January 25, 2011 Thanks for keeping us posted, I'm super curious to see how you progress. The one POTS specialist I recently saw thought the protocol was "too extreme" , but I still may try to see if i qualify and if i cant do it, I can always drop out and modify the program. We'll see what my local doc says... i'm so desperate, i kinda want to try it, eventhough I know just going anywhere 3x a week, let alone a gym, really knocks me out.I did read the abstract of the article they published and i kinda agree with firewatcher, had some questions, and cant say i agree with the philosophy, well not for all POTS patients. And it was a small study, i think 19 out of 25 people completed the program. I'm not sure what happened to the other 6, but i wonder if it was just too much for them. It's interesting too that no other ANS abnormalities were found, cause that was one of my questions after reading the abstract. They seem to conclude patients dont have ANS dysfunction, but just small heart, etc.. When emailing his assistant Tiffany, it seems they focus on the HR piece of it. But with me, even when my HR is lower I still have symptoms. I also have several other autonomic symptoms. And may have CFS as a co-existing condition, as well as had Hodgkin's/chemo...so I'm not sure if i'll qualify or if the program helps people who have a lot going on and have been sick for a long time. I'm also curious how the patients started out.. were they unable to work/drive? or were they still functioning? I'm wondering if you have to have a certain degree of health/functionality in order to benefit... How would you describe your functioning level and most debilitating symptoms before starting the program?Anyway, continue to keep us posted as you go through the "tougher" 2nd and 3rd months...I hope your one of the cases his protocol helps:-) Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted February 23, 2011 Author Report Share Posted February 23, 2011 Hi Caterpilly,I am in week 8 now and really doing great! Before I started the protocol I was doing ok - compression stockings really helped me - but at its worst (before I was diagnosed) my POTS had me bed ridden for 3 months (all while I was trying to plan a wedding, yikes!). I would encourage you to definitely definitely give this a try. The paper that was published about the exercise protocol only gave the results for a few people but I'm under the impression that now hundreds of people are enrolled and feeling better. I feel like I am almost back to my old self. The program is intense, and you really have to make it the priority for the 3 months, but it is much easier than I imagined. I never had super awful days on the program where I had to crawl back into bed when I got home (like I did when I went swimming on my own prior to the protocol). Give it a shot and let me know how you make out! Quote Link to comment Share on other sites More sharing options...
nunntrio Posted February 24, 2011 Report Share Posted February 24, 2011 Is there anyway to get a copy of the exercise program without applying for the study? I would like to consider trying it. Quote Link to comment Share on other sites More sharing options...
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