Orthostatic Intolerance

[beneficii]

My cardiologist doesn't take me very seriously about this, but if I stand up straight and still for even a few minutes my feet and lower legs will feel like they're burning and they will start to tremble.

I notice sometimes my heart rate increases a lot after standing up from a reclining position.

My cardiologist has marked me down for "inappropriate sinus tachycardia" and criticizes me for not staying hydrated enough and not exercising enough.

[BeforeTheMorning]

Hi there,

Welcome to the forum!

Before I was diagnosed with POTS, I also had two 'not very believing' type cardiologists. I was told that by the most helpful person I saw that I might have inappropriate sinus tachycardia (because these people didn't know enough about POTS) and I was also told I didn't drink enough too!

If you think that POTS is a possible diagnosis for you, then maybe you should look into seeing a doctor who specializes in POTS. I don't know what country you're in, but Dinet.org has a physicians list and so does Potsuk.org.

I switched to seeing a specialist and it was SO worth it! He is great. It's so just to have someone believe what you say. He ordered me a lot of tests to rule out some other things, and then diagnosed me last year.

I hope you find someone to help you soon,

Best Wishes,

Lyla

[corina]

Hi benefici, welcome to the forum. I agree with Lyla that working with a dysautonomia specialist would be best!

[looneymom]

Hi and welcome to the forum. Hang in there. POTS is not an easy thing to deal with but having a good doctor with experience does help.

[beneficii]

Thanks. I live in Memphis and the closest I see here is in Nashville. I've set up an appointment with a neurologist like my endocrinologist recommended.

[artluvr09]

I have trouble standing in one place as well!!! If I stand in one place for a while I get lightheaded I either have to lean against something or walk around. My cardiologist said I have orthostatic hypotension. It is so frustrating! I hope you figure out everything!!!!

[rgny]

Getting a proper diagnosis can be a long haul. I carried the diagnosis of IST for four years and was trialed on all kinds of rate control drugs with horrendous side effects. My understanding is that with IST, your rate never drops much below 90 bpm even when lying supine; with POTS, your rate can drop into the normal range or even a little low when supine and you don't get the crazy increases until you are upright. My GP finally diagnosed me with a poor-man's tilt table in his office. When my heart rate increased by 50 bpm within a few minutes of standing up, he turned around and entered "POTS" into my medical record and my cardiologist is on board now. Good luck to you.

[Racer]

Welcome Beneficii

I think most doctors recommend increased hydration, sodium, exercise for OI in most cases at first. I think the hard part for many is when this treatment does not work, and they cant convince the dr. Many dr just dont know how to treat oi beyond that (or even what pots is).

I think Vanderbilt would be worth the three hour drive, since they are one of the few places in the country with a dysautonomia clinic.

[Goschi]

Hi and welcome Beneficii,

as a first step (before going to a more specialised autonomic clinic/doc) you could try to find a doc who would perform a so called "Poor Man's Tilt Table Test". In fact, every GP could do it easily and it will give you a first idea whether POTS could be an issue for you.

However, a complete autonomic testing should finally be done!

Good luck and best wishes!!

[beneficii]

Hi and welcome Beneficii,

as a first step (before going to a more specialised autonomic clinic/doc) you could try to find a doc who would perform a so called "Poor Man's Tilt Table Test". In fact, every GP could do it easily and it will give you a first idea whether POTS could be an issue for you.

However, a complete autonomic testing should finally be done!

Good luck and best wishes!!

Sounds like a good idea.

I did some poor man's tilt table testing myself, when I don't think I was dehydrated.

time, blood pressure, heart rate, symptoms

lying down for 5 minutes, 109/69, 80

2 minutes standing, 109/60, 109 (irregular), feeling light-headed, my feet and lower legs begin to burn

3 minutes standing, 97/62, 113

6 minutes standing, 110/62, 120 (irregular), legs are very uncomfortable and trembling

My feet still tingle.

[beneficii]

OK. Drank 2 big glasses of water and ate ramen (very salty), and did it again:

Time: BP, rate

0 min: 110/66, 81

1 min: 107/65, 102 (irregular)

2 min: 94/70, 103

3 min: 99/68, 104 (irregular)

4 min: 98/60, 104 (irregular)

5 min, 98/61, 109 (irregular)

6 min: 107/63, 110 (irregular)

7 min: 115/63, 110 (irregular)

Didn't quite make it to 30 this time. I finally gave up after 7 minutes because my lower legs and feet were burning.

I wonder if I should show this to the next doctor I see.

[nomdeguerre0850]

When I was trying to figure out what was going on before I was diagnosed, I did the "poor man's TTT" and recorded the results several times a day for a month. I took the chart I had created with all the data as well as one journal article that explained POTS very succinctly. Doctors love objective data. This is when the pieces finally started falling into place.

Every time I went to a new doc, I would bring an article and have to educate them about POTS,except at the Mayo Clinic. I'm in Honolulu, and could not find any physicians who had even heard of POTS, with the exception of one...and he retired the week after I saw him.

I would suggest you track and record your symptoms in a way that they can see what's happening and bring this with you to your appointments. It can really help them see what is happening and keep them better focused. Otherwise, I found that all the appointment time could be used answering questions that had no relevance.

Getting diagnosed can be a real challenge.