Faye Posted November 25, 2015 Report Share Posted November 25, 2015 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. Quote Link to comment Share on other sites More sharing options...
navyblue Posted November 26, 2015 Report Share Posted November 26, 2015 You are stronger than you think. My advice: get on an exercise program regardless...it has helped me a lot with heart rates and symptom control. Quote Link to comment Share on other sites More sharing options...
statesof Posted November 26, 2015 Report Share Posted November 26, 2015 Hi Faye, have you had a tilt table test done? I had a "normal" holter monitor as well but with abnormal tilt table, thats the way I got my diagnosis. And my cardio who has had POTS patients before, interpreted the holter moniter results differently given my prior POTS diagnosis. Just know that many of us go through a handful of doctors before getting an accurate diagnosis. You could always ask your cardio for a referral to a autonomic specialist or see if he will order a tilt table test, it seems like that is the one "definitive" diagnostic test. Just in the mean time the compression stockings, and salt/ water loading is a good starting measure if you find it helpful for you. Quote Link to comment Share on other sites More sharing options...
Faye Posted November 26, 2015 Author Report Share Posted November 26, 2015 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. Quote Link to comment Share on other sites More sharing options...
lewis Posted November 27, 2015 Report Share Posted November 27, 2015 I remember feeling much like you feel. I was bound and determined to get fit the button of it and felt the doctor's recommendations of increasing fluids etc. Was just too get me out of the office. However after having gone through every single test out there and everything still coming Back normal I am left with changing my lifestyle to fit around what my body can do. It's taken a huge adjustment and took a couple years to figure out what works, what helps and what not to eat. My quality of life is better than when it started but no where near what or was before out all started. Staying hydrated, eccersizing specifically weight lifting and staying away from gluten are the main things that help me. I recommend finding a good neurologist that knows dysautonomia (if not at least a cardiologist), otherwise you'll go to your doctor appt. Knowing more than your doctor and get no where. It's really frustrating, the whole ordeal but at least we have this site that has loads of info. Quote Link to comment Share on other sites More sharing options...
Faye Posted November 27, 2015 Author Report Share Posted November 27, 2015 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 Quote Link to comment Share on other sites More sharing options...
ks42 Posted November 27, 2015 Report Share Posted November 27, 2015 Are you looking for northern or southern CA?There are POTS specialists at UCLA, and at Stanford, where they have full autonomic clinics. I believe there's also a cardiologist in La Jolla that treats it as well (check the DINET physician list). I also heard a rumor that UCSF is opening an autonomic clinic early in 2016, but don't really have much information on that. I had a couple of fantastic docs in San Francisco as well that diagnosed and treated my POTS, so if you want some specific recommendations for that area, PM me - I can give you names of primary care docs, cardiologists, and neurologists who understand and have treated POTS, even though they're not explicitly POTS specialists. Quote Link to comment Share on other sites More sharing options...
jknh9 Posted November 29, 2015 Report Share Posted November 29, 2015 I agree with navyblue, start an exercise program. You ARE stronger than you think. It's going to be horrible and so difficult in the beginning and may make you feel worse in the short-term, but it is SO beneficial in the long run. Invest in a cheap HR monitor so you can see what's happening when you exercise and create a log of it. I also set a limit for myself--if my HR gets around 180, I slow down or stop exercising for a while until it comes down. If you walk outdoors, you should also look into getting a medical bracelet. I have a Road ID one just in case something should happen. For me, it's also helped to do muscle toning, not just cardio. Compression socks also help a lot with circulation and recovery after working out.It's definitely worth it to get a tilt table test. That seems to be the definitive test for most of us. It's how I was finally diagnosed after going through a barrage of tests and being misdiagnosed for years with anxiety. I am still not "normal," but I live a fairly normal life now after being all but bedridden 4.5 years ago. Hang in there! Quote Link to comment Share on other sites More sharing options...
Faye Posted November 29, 2015 Author Report Share Posted November 29, 2015 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... Quote Link to comment Share on other sites More sharing options...
Hello Darling Posted February 26, 2016 Report Share Posted February 26, 2016 Are you in Northern or Southern California?I know there is a specialist in La Jolla at Scripps. Dr. Ahern. While my cardiologist is not an expert on POTS, he made sure that I was well taken care of and kept going until we found an answer which in my opinion is the best kind of doctor. He now is sending me to other specialists and then they will instruct him on how to manage my care. Temecula Valley Cardiology is where I go and they are so great. If you are near this area, I highly recommend them. Quote Link to comment Share on other sites More sharing options...
vet_runner Posted February 26, 2016 Report Share Posted February 26, 2016 I remember feeling exactly how you felt. I saw a cardiologist and he told me to drink Gatorade and everything would be fine. My symptoms got some much worse and I kept searching for help for over a year and a half until I got a tilt table test and a doctor that specializes in Dysautonomia. I'd recommend pushing to see a specialist. You are strong and even though this time seems so challenging, you can make it through! Thinking of you! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted February 26, 2016 Report Share Posted February 26, 2016 If you are near Stanford, they have two great doctors that I know of, Dr. Jaradeh, and Dr. Muddippi. I have a friend who sees Dr. Muddippi and he is really great with follow-up also. Dr. Jaradeh is a wonderful, wonderful doctor (only doctor I have ever taken my daughters to that I didn't have to be the doctor), but I think he is more or less a diagnostitician, but Dr. Muddippi also is good with follow-up. I don't think you would be at all disappointed with either one, though. We have also been to UCSF's new autonomic clinic. If you are already a patient there, you might have a chance of getting in, but I heard there was a screening process, so I'm not sure they are open to the general public yet. It is new and they are a little slow getting organized. Don't give up, though! Quote Link to comment Share on other sites More sharing options...
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