Looking For New Doctor

[Notgivinup]

I'm in Youngstown, Ohio. I need someone that has at least a general idea of what POTS is. I need someone to manage my meds. You know. Give me some suggestions, something new to try.

I've had the worst luck with the "best" dysautonomia docs. I guess they just don't see my day to day life as being all that bad. I don't faint. My B/P's aren't WAY over the top. My low this morning lying in bed was 84/68. Low, but they would never see that in the office.

Heart rate is never below 100, except while lying down. Highest I've recorded standing was 145. I know it's been higher. Not high enough I guess.

If they can't SEE how I'm feeling, they just don't help me. It's like I walk into the office fine, I look good. I speak ok. (They don't realize how hard I work at being articulate).

I wish I would just all out faint right in front of them. This is so frustrating. If I wasn't really sick, would I have spent thousands of dollars on tests for the last three years. Would I be going to doctors constantly. Would I be on DINET complaining every week. NO........I would be out living my life!!!!!

Why can't they see it? Should I act sicker? This is my line of thinking now. If I look and act fine, then maybe I should paint my face a pasty white color, make myself vomit, grab my chest in agony, speak incoherently, and fall over onto their feet. Ugggg. I'm not crazy, and I would never do that, but hey, maybe then I'd get some help.

[lieze]

I don't have any advice but your post makes me not want to go to the doctor.

Why put myself through a bunch of tests? I seem okay too, I'm getting by somehow.

I feel bad once in a while, I lay down and I recover.

???Not sure there is anything else I can do but wait for this to either get worse better or stay the same.

lieze

[Notgivinup]

I don't have any advice but your post makes me not want to go to the doctor.

Why put myself through a bunch of tests? I seem okay too, I'm getting by somehow.

I feel bad once in a while, I lay down and I recover.

???Not sure there is anything else I can do but wait for this to either get worse better or stay the same.

lieze

Lieze, please don't let my post keep you from getting help. This is just me. LOTS of people get better. Lots of people find good doctors and find the right combo of meds for them. Please, please, I'm so sorry to have discouraged you. Just ignore me. I'm still Notgivinup.

I've just not found my angel doctor.......yet. I know someone on here will point me in the right direction.

[Rene S.]

I'm in Youngstown, Ohio. I need someone that has at least a general idea of what POTS is. I need someone to manage my meds. You know. Give me some suggestions, something new to try.

I've had the worst luck with the "best" dysautonomia docs. I guess they just don't see my day to day life as being all that bad. I don't faint. My B/P's aren't WAY over the top. My low this morning lying in bed was 84/68. Low, but they would never see that in the office.

Heart rate is never below 100, except while lying down. Highest I've recorded standing was 145. I know it's been higher. Not high enough I guess.

If they can't SEE how I'm feeling, they just don't help me. It's like I walk into the office fine, I look good. I speak ok. (They don't realize how hard I work at being articulate).

I wish I would just all out faint right in front of them. This is so frustrating. If I wasn't really sick, would I have spent thousands of dollars on tests for the last three years. Would I be going to doctors constantly. Would I be on DINET complaining every week. NO........I would be out living my life!!!!!

Why can't they see it? Should I act sicker? This is my line of thinking now. If I look and act fine, then maybe I should paint my face a pasty white color, make myself vomit, grab my chest in agony, speak incoherently, and fall over onto their feet. Ugggg. I'm not crazy, and I would never do that, but hey, maybe then I'd get some help.

I feel your pain and get exactly where you are coming from. I've been to various cardios, endos and one neuro who knew nothing about autonomic dysfunction. I was always have elevated b/p but none of them thought it was a big deal. A few times especially at night, my b/p would plummet to 70/40 and they never batted an eye when I told them. I too wish that my b/p would either plummet or go skyhigh and my b/p race or even a palpitation while having an ekg. It's so frustrating. And I too have been to drs that were on this site.

I too feel like maybe if I looked worse (and I think I look pretty awful), or presented myself as being incoherent maybe I would be taken seriously???? It's so frustrating but you are not alone.

Many have found amazing drs but I don't consider myself one of them and sounds like you are in the same boat. I'm so sorry. I'm not going to all these drs just because I have nothing better to do with my time or money.

Grrrrr. Good luck and I hope you find what I'm missing!

Hugs,

Rene

[sugartwin]

Hey, I'm in Cleveland! Personally I see Chelimsky at University Hospitals of Cleveland. He's difficult to get in with (aren't they all) but was the only one who found out the root causes of my POTS (small fiber neuropathy and EDS) He even swung by to see me while I was admitted recently although he wasn't in charge of my care. I had much less luck at the Cleveland Clinic.

Even that said, I've had even less luck with other doctors. Every cardiologist I ever saw had to be told what POTS was. The chief of neurology at my local hospital had treated POTS patients, but said I was way over his head. In general, if you have a difficult case, going to a doctor who doesn't specialize in dysautonomia probably won't yield good results unless you can find the root cause of your dysautonomia and that turns out to be treatable.

[Christy_D]

My son also sees both Dr Chelimsky's(Thomas and his wife Gisela). They are both wonderful caring people. We live in St Louis and travel to Cleveland to have them treat my son. They have looked for the root of my sons nausea, and have ruled out it being caused by the GI system. It is caused neurologically.

While my son was having testing done last week, Dr Chelimsky stopped by so we didn't have to make another trip to the hospital to see him. I highly recommend them,(he is a neurologist, she is a pediatric gastro). It does take about 3 or 4 months to get in, but it was well worth the wait.

[Simmy]

Yes, finding the right doctor is crucial, but there is a way you can have them see what goes on inside you... record it, using a video camera or preferably your cell phone so you can show whatever doctor it is right on your phone.

I did this back in September of 2008, recorded my heart rate monitor watch jumping and dropping from standing and lying down, and it was instrumental in my diagnosis. I guess you can also video your blood pressure readings as at least some form of evidence, video doesn't lie.

I'm fortunate that I found a good PotsDoc who understands my condition and works with me and not against me, but since I'm applying for disability insurance now I've taken the documentation a step further - I now also use a SmartSync heart rate data logger which records my heart rate wirelessly and is compatible with my chest strap, and then I print out the results in graph format. You can find the SmartSync on Amazon for $10.

Good luck

[smiles]

It is so hard to find the right doc. It took me years. I tried neuros, endos, GI, GP, cardios, psych, internal med, chiropractor, AD doc..... I have had the most luck with autonomic specialists and a cardiologist. Luckily for me my cardio is also my autonomic specialist. That works well for me. He is in Auburn, AL though. He is willing to try different things till something works. He's open to natural stuff to. He realizes that each of us is different and has different needs. I'm unfortunately a one of a kind for him. For me the neuros. and endo. were the least helpful cuz knew nothing about AD. It may be different somewhere else. But in a 4 hour radius from here, that is the way it is. I've had so many referrals to other docs from docs who had no clue what to do for me, and those docs couldn't help me either. Some thought it was in my head and needed a psych, which I tried and they said it was physical. Crazy, Crazy. Just keep trying. don't give up--you'll find one.

Smiles