juliegee Posted August 27, 2006 Report Share Posted August 27, 2006 Hi All-I'm not formally DXed. But, I recently did a poor man's tilt table test that firmed up POTS for me. My resting pulse (while lying down) was 64. Within 8 mins. of standing upright, my pulse was up to 128. I felt lightheaded and nauseous and my vision dimmed. I've been symptomatic my whole life, with very severe symptoms at times: syncope, severe tachy, adrenal rushes, flushing, pain when breathing, aching feet, severe raynauds, etc. I'm actually doing pretty well now- not too many symptoms. Praise God! I was just wondering if I should bother formally confirming my DX. I've been on atenol and verapamil and don't like how any of the beta blockers make me feel. I excercise daily and am really careful to stay hydrated. I also use lots of salt. I'm afraid of the tilt table test and think I'm doing OK now. Is there anyone else out there who doesn't participate in any formal medical treatment? I'm also the mom of a teen with NMH, CFS and severe GI motility problems. I guess that apple didn't fall too far from the tree (Hi Dayna from GP support group!) Thank you in advance for any advice & for sharing your experiences. Julie Quote Link to comment Share on other sites More sharing options...
Ernie Posted August 27, 2006 Report Share Posted August 27, 2006 Hi,Dr Grubb formerly diagnosed me with a poor man's tilt and my medical history. A TTT is not an absolute necessity for a diagnosis. Quote Link to comment Share on other sites More sharing options...
calypso Posted August 27, 2006 Report Share Posted August 27, 2006 I don't take any medications right now. I feel as though the meds only control my heart rate a bit, and not enough to outweigh the side effects of fatigue and dry mouth. I am glad that right now you seem to be functioning well. As for confirming a diagnosis, many here will disagree with me, but I think if you've been stable for a while and have already seen a couple of doctors and had all the tests (echo, EKG, Holter, urine/blood tests, etc.), then I'd just keep doing what you've been doing. You can experiment with your diet (cut down or eliminate sugar and simple carbs, try going gluten-free), because some people here have had luck with this noninvasive approach. I hope you continue to feel OK. I also feel for you in regard to your teen having autonomic issues. There's nothing worse than having to watch your child go through the same crappy things you go through! Amy Quote Link to comment Share on other sites More sharing options...
corina Posted August 27, 2006 Report Share Posted August 27, 2006 hi macksmom,nice to meet you. i agree with ernie and calypso that the tilt you had will be enough. especially because you're doing pretty well now. i would save the bugs and spend it on an outing with my family . i have two teenage kids (15 and almost 12) so i do understand how you feel about your teen having trouble. i worry alot about my kids as well (not that i let them know ).hope you stay as well as you are!corina Quote Link to comment Share on other sites More sharing options...
Tanzanite Posted August 27, 2006 Report Share Posted August 27, 2006 I didn't even have a TTT. They diagnosed me by symptoms but then I had practically every symptom going and was in a real bad way at the time. Plus I already had a dx of Autonomic dysfunction from 5 years ago so it seemed pretty obvious. Quote Link to comment Share on other sites More sharing options...
juliegee Posted August 27, 2006 Author Report Share Posted August 27, 2006 Hi Amy,Thanks for all of the info. Yep, I've had all of the tests you mentioned. The holter,of course, documented the tachy, but my doc didn't seem too concerned with any of the results. He keeps putting me on beta blockers, but, like you, they make me feel tired. I feel better with no meds. I'll mention the whole POTS idea to my doc next time I'm there for something else :-)I am currently on a non-dairy diet as I have gastro problems (reflux and chronic constipation.) I've wondered about gluten-free. Doing both would be really tough, but I may give it a whirl. I do try to avoid suger and simple carbs- didn't know that helped with POTS.Thanks for all of the wonderful information. I hope you can stay off the meds, too.JulieI don't take any medications right now. I feel as though the meds only control my heart rate a bit, and not enough to outweigh the side effects of fatigue and dry mouth. I am glad that right now you seem to be functioning well. As for confirming a diagnosis, many here will disagree with me, but I think if you've been stable for a while and have already seen a couple of doctors and had all the tests (echo, EKG, Holter, urine/blood tests, etc.), then I'd just keep doing what you've been doing. You can experiment with your diet (cut down or eliminate sugar and simple carbs, try going gluten-free), because some people here have had luck with this noninvasive approach. I hope you continue to feel OK. I also feel for you in regard to your teen having autonomic issues. There's nothing worse than having to watch your child go through the same crappy things you go through! AmyThank you, Tanzanite, Ernie & Corina!You all make me feel better. I don't want a TTT and I really feel that it's not necessary. My poor son (13 y/o) had his at Johns Hopkins, while in the midst of an antroduodenal manometry. (He had probes up his nose, down his throat and into his tum and small bowel.) With all of that equipment, he vomited before fainting and needed a few IV saline bages to get back to normal. It was really frightening. I'm really strong for him, but a big baby when it comes to myself. Thanks again for your advice.Julie I didn't even have a TTT. They diagnosed me by symptoms but then I had practically every symptom going and was in a real bad way at the time. Plus I already had a dx of Autonomic dysfunction from 5 years ago so it seemed pretty obvious. Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted August 28, 2006 Report Share Posted August 28, 2006 welcome to the forum. formal diagnose. that is all i wanted, i needed answers. how could i be just fine one day and the next not even able to pt with the rest of my marines? POTS, NCS got me medically retired. i am 20 years old and i am retired.should you get a diagnose? that is up to you. i just wanted answers and i felt as if a diagnose would mentally make me feel better. that question is totally up to you to answer. wether or not you want a name for it. good luck to you.dionna Quote Link to comment Share on other sites More sharing options...
Lulu Posted August 28, 2006 Report Share Posted August 28, 2006 welcome to the forum! i hope you find what you need. i agree w/dionna....i didn't get a "formal" test for hyperadrenegic POTS, but i've had the TTT done a couple of times. iron maiden torture test, if you ask me. but it did help me to *know* what it was & be able to explain somewhat what was going on. but it didn't make the getting through living with it any easier....for that i have good docs, supportive friends/family and this forum to thank!! you've come to the right place for support and good info!good luck! lulu Quote Link to comment Share on other sites More sharing options...
corina Posted August 28, 2006 Report Share Posted August 28, 2006 what i forgot to say:when i was formally diagnosed i wanted the meds, not the name. when we drove back my husband said that he was happy for me that they finally formally knew what i had, i told him that i really didn't care. he said that it could make a difference in getting social security payment (which of course i didn't think of ).he was right and i am receiving my (little) payment for years now and i am glad to have my own income.corina Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted August 28, 2006 Report Share Posted August 28, 2006 Hi Julie,Welcome to the forum. I don't have much to add.I have not been "dx". For me it would be more peace of mind to know what is making me feel so awful all the time. The question "what's wrong with you?" Is very hard to answer when you don't know for sure yourself.Take care and good luck,Amber Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted August 29, 2006 Report Share Posted August 29, 2006 Hey Julie welcome to the forum and thanks for the shout out. I personally wouldn't need a confirmation if I was managing fine on my own. These illnesses can abate and maybe your one of the lucky ones. I would definitely mention it to your doctor incase you have questions in the future.Also if you start having problems which I hope you won't. I'm sure Macks' doctors would have great referrals for you.I hope you find all the answers you need and that you and Mack are adjusting to his school schedule.Have a great nightdayna Quote Link to comment Share on other sites More sharing options...
Sunfish Posted August 29, 2006 Report Share Posted August 29, 2006 hi julie - i just wanted to say hello & welcome. we've "met" on the GP site (though i haven't been there in awhile due to continually evolving health craziness) and as soon as i saw the "mack's mom" screenname i knew it must be you. i'm sorry you have added reasons to be here but am glad you've joined us here. melissa Quote Link to comment Share on other sites More sharing options...
juliegee Posted August 30, 2006 Author Report Share Posted August 30, 2006 Thanks for the welcome- Melissa & everyone!It's been nice to see several smiling faces from the GP site. I appreciate all of the advice!Juliehi julie - i just wanted to say hello & welcome. we've "met" on the GP site (though i haven't been there in awhile due to continually evolving health craziness) and as soon as i saw the "mack's mom" screenname i knew it must be you. i'm sorry you have added reasons to be here but am glad you've joined us here. melissa Quote Link to comment Share on other sites More sharing options...
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