Faye

I hope this is ok to ask. I was able to get my insurance to pay for a consult...and wondered if anyone has been to his office and what to expect. I don't have an apt till December 30th...so it's a bit out in time, but he was suggested on the list... If anyone has met with him or any words of advise to better prepare for my consult I would really appreciate it. As in I don't want to go in with every issue I have and waste time, but to make sure I can get things properly tested and on a road to having better days.

Wow thanks for posting the picture, this happens all the time to me, I just never asked or thought too much about it. My cardiologist said I a heart healthy and probably have pots but no tilt test and no real plan, so currently looking into find a Dr who is a little more familiar and who treats POTS patients... I have had to miss out on events due to feeling anxious and worried about my pulse or tummy issues...it a challenge but eventually we will learn on this journey how to get thru it all better. This website is so helpful even if it is to know others understand what you feel and experience.

Thanks for the input! We are a gluten,dairy, and sugar free house.....my daughter has GI issues and helped to make that change...been tested for just about everything....was on xifaxan few time to no avail......I am a grazer and eat 6 meAls a day and 30 mg fiber, but my Gi seems to have a mind of its own;( can't do fish or flax oil( allergic) probiotics made me sick to my tummy;( Been at different diet plans but it seems as tho, somethings work for a while and then back to square one.....I do have to avoid take out food, and treats.....and small meals are a must or I will really be sorry....sigh..... Apperictae the feedback very much...

I have IBS-C, I was wondering if anyone else has it and if they have found any treatment that helped. I have been on fiber and mirlax for several months and last two months on a med to help with the spams. The med for the spams does help them as in they are not as painful as often but they are still there and still have issues with constipation.... I drink plenty of fluid and get my fiber in....not sure if anyone has had any success with this. My Gi dr thinks my IBS is related to POTs, but said he can just try and help with the spams and constipation....

Curious does anyone get tingle that is also in head and down arms and legs into feet?

Last Sunday was having some what UTI feelings, went to urgent care, urine came back normal.....next day symptoms came back.. And then gone....I am wondering is maybe was having spams in my bladder?

Not sure if this fits in the same category but recently been having moments where half my face goes numb and tingling like when lidocaine from dental work is wearing off, and some times lip and under eye spasms....

I read the posts and just now bought the chest strap,I used my phone to download the app. If you want to buy the watch it was separate at the store I went to. I like the strap idea because I can peek at my phone and no one can see what I am looking at....and small enough that under an outfit not too tight will conceal. I ck against my blood pressure machine, finger monitor, and counted and was happy to see spot on....this will be great for work outs of if out trying to do stuff

I use to do 5 miles a day walking, outdoors and pretty hilly area, but recently stopped, I think I am going to invest in chest strap type hard to carry around the finger one to catch good pulse reading, since you have to stop...I also agree that probably need to tone update legs and core....it won't hurt,and hopefully it will help....just need to understand sometimes have to take breaks and baby step thru...I am so use to powering thru life that anything other than over drive, makes me antsy....even a simple trip to the store my daughter would say you walk like your on a critical mission....well these days glad she can do those missions for me, standing in holiday lines don't workout so well....or any line for that matter...

Just sharing... Since having Pots symptoms....I have been keeping goggle stock up, and reading thru many old posts to try and understand what is happening with me....I am humbled in away that I never have been.....I have been asking myself what trigger this, and what am I going to do to fix it..... But now that I look back thru life, and all the things that have been issues off and on for years, it probably has been Pots all these years,mint just never triggered all at once. Heart palpitations, Gi issues, twitching,tremors,ect.... I feel like I am going thru the 5 stages of grief...and in the moment, I am going thru acceptance...accepting that life may need to be different, may need to make adjustments,but doesn't mean life stops. I'm am normally what ppl would call a naturally born fighter/survivor,and will not take no for an answer once my mind is it....and whenever something challenging comes my way, will digest, maybe throw a fit, but pretty quickly will list all the positive things...so feeling like there was no light at the end of the tunnel was a bit new for me.... However I am learning everyday and sometimes multiple times in a day, that with Pots it literally is trail and error and you just learn to apperictae the success as they come and when they error lay down and try again later...literally laying down, also a new concept for me.... This thanksgiving I wasn't feeling very thankful, no was feeling more bitter....but I am being humbled and apperictaeting all the post ppl have posted and all the supportive response and the confirmations of oh yes I get that too....so many ppl fighting and making this journey.. Thank you all for your asking questions and sharing experiences and lessons learned.

Thank you for this feedback, I have been reading about POTS since my cardiologist first mentioned to me, and had not heard about this, while searching Internet, stumbled across this, and wondered with POTS having so many different symptoms as well as possible causes, I just wasn't sure since this site and the dysautonomia international site didn't have this listed as a possible way to treat...POTS is something I am now just hearing and learning about....

Yes you are so spot on....I am so thankful for this site and those who are so willing to share their experiences and feelings, feeling alone and feeling like there isn't any game plan, or hope in those moments, there is no way to really state how blessed I feel to have found this site. It helps to hear that it will be a trail and error, and to know each person is there to encourage you and cheer you to keep trying and fighting to find what works to find a happy place, trying to come to terms that the new normal may need to be a challenge, to come to terms with the concept of good days and not so good, but to learn to apperictae both....I know it can be and so many folks on this site, we are all on a journey..... I am a caregiver and have been fighting the good fight for nearly 19 years with drs and specialists and insurance companies, over and over, I suppose I just had not been prepared to do it again, only for me this time....I am going to looking for some specialist who will be able to,help guide and give some game plans to have more good days then bad,,,,,I may have to drive quite a ways or go out state or pay out of pocket but I have seen where many folks have found that they did finally find someone who could help with symptoms I use to walk 5 miles a day and do yoga couple times a week but since this onset of symptoms, not so much, but with all the articles and post now at least while hunting for a dr, some ideas for my own game plan.....which is good

Has anyone heard of this type of treatment for POTS? Or know anyone who has had it? Found this from autonomic specialist on their website, but based on my limited research and knowledge of POTS am hoping someone has heard of knows something bout it.

Thank you both for your response....I was hopeful when the cardiologist has mentioned previously about POTs and had a false assumption or expectations that he would lead me down the path of possible therapy or treatment to help better manage my symptoms, and after his call and response today, I felt I did not get the support or guidance I expected . I have been taking beta blocker,wearing compression socks,6 small meals with salt, and walking about 3 miles a day tho, not in one go.... I have not had a tilt table test Ina medical setting, I will reach out to my primary dr to see if there are any specialist in the area that do the tilt table test to see if I can get a more definitive confirmation as to what is causing my symptoms and what options I have in terms of treatment.... I am very disappointed in feeling I am going to,have to fight the battle,to find my diagnosis....tho that is not true ...those that post and share ....they too have traveled and are traveling on this journey, that leaves me a little sad,,,,,yet more hopeful that I will find a medical professional who can lead me to a correct diagnosis as well as a plan or plans to try and feel better.

I have been trying to figure out what is going on, based on what I have read here and several sites...my symptoms are very much Pots...cardiologist even says that but also said he didn't really see anything odd in my holter....I walk up the steps and my heart rate goes from 70 to 135....and that is not odd. I sit pulse is 70 and stand and it goes to 120...that is not odd.....I am so frustrated right now...his advise was to keep wearing compression socks, salty foods,hydrate, and if it still bothersome then come in for exercise program.... My life has been impacted by whatever is going on, and am. It doing the things I normal do, I am not saying that I have a life threatening disorder but it impacting me and my day to day life...and social life.... If anyone happens to know of any specialist in California that specializes in pots or at least tries to help pots patient or will test them properly...I would greatly appreciate it.

I have recently been having this sensation like my chest swallowed a ton of cough drops.....I asked the dr and they said it was heartburn.....I am not sure never had heartburn like that before .....

i have ibs where either I can not go or go frequently in a day, 5 plus times....yesterday was a no go day and heart rate was actually pretty good,but today noticed heart rate a bit high, and a frequent day...just wondered if any one else has had this correlation.

I am so glad it came up! I went to urgent care last night because my lip would not stop twitching and numb and tingling and was up to my eye. No pain, just uncontrollable twitching, they said it was fine and most likey from stress or meds....I just said nope but since I. See to be ok, on my way home I go. I get very bad spasms( IBS confirmed) so seeing this just makes me feel more relief and maybe this is just one more thing to share with my cardiologist....while waiting for 'official ' diagnosis

Thank you both for your thoughts.....I suppose I am going to need to get use to the concept of trial and error....embrace it as a mantra

Dr suggested compression socks, but did not say what strength. Went to a medical supply store and rep suggested starting light weight 15-20. I just wondered if anyone found that they were helpful and if so, what did they help with. I.e. Blood pressure or pulse or both. What strength is usually recommended and seem most beneficial and in what way? The other thing very confusing is knee high vs full tight or pantyhose... I know I could not do thigh, it would bug me with the thighs I have.... Has anyone used spanx under pants as well? Notice any benefits? If so, in what way. Desperately trying to feel better....any thoughts or experience would be greatly appreciated....so much out on the internet not sure what to think....

I am not confirmed with POTS, under going test,however my cardiologist is leaning in that direction. I am on a low dose of beta blocker and wearing compression socks and it is better than a few weeks back. But I was so excited to see someone posted what has become my new rates..60-70 laying down,70-80 sitting and working, walking or standing too long 110-118, going up the stairs in my house 130 in a heart beat literally. Although I wish no one to feel the high end rates for simple walking up stairs, it is nice to know I am not the only one ....

It's not nice to feel like your mind is not right, but it helps to know other people have noticed thier emotions being out of sorts, thank you for sharing. To know it can be normal,and not just in my head, give myself a little grace and understanding.

thank you for your quick response. It may be bothering me on a level I am not connecting with, but I do know I am very frustrated by not being able to do things i normally do....right now yoga and I are not friends but I will try the meditation aspect and see if that can cool me being down. Great idea....so use to the all or nothing....may have to transition into a new mind set with different expectations for a while.

Hello, I have not been confirmed with Pots but my cardiologist suspects this and going to do some testing to confirm. Based on researching the Internet, it seems I have many of the same symptoms. In the meantime I was hoping to find a place to share and maybe get feedback on how I am feeling or what others maybe have noticed or tried. Recently I am finding that my emotions are running a little off. I find I become easily frustrated and angry and then want to cry over things that I would normally would not. I wondered if anyone has found that they encountered this type of thing... I know that everything will work out and it might be a trail and error to find what helps with the high heart rate,dizziness,headaches, and being tired...I realize my symptoms may be mild compared to others...I just know that my life in the moment and the normal things I do are a challenge, I just woke up one day and everything turned upside down... Just really wondered if these emotions were something other POTS members encountered Thanks for your time