P o t S

[amy1808]

Has anyone on here got POTS ? X

[KayHimm]

I also have autonomic dysfunction but with orthostatic hypotension. My understanding is that with POTS your heart rate goes up but mine goes down. The causes of ours may be the same, though. I would be happy to help you in any way in managing symptoms. Are you told to increase salt? Did they put you on medication?

[amy1808 in reply to KayHimm]

Hi kay , I have APS and Hemiplegic migraine. I have been suffering with palpitations, breathlessness etc for a while . Had loads of tests which found a leaky heart valve , palpitations got worse lately and I did research and it said POTS is common for people with lupus . I can be sat doing nothing and I go funny in my head , memory gets worse and speech slight weakness then the palpitations, it goes as quick as it comes. I think my dr thinks I’m imagining it🙈

[KayHimm in reply to amy1808]

Amy — I am certain your doctor does not think your are imaging it. You have APS, which causes all sorts of problems. POTS is hard to diagnose. Could you just ask your doctor if he thinks it is a possibility? Do you feel light-headed after standing? What about when you bend over? Are you affected by heat and humidity?

[amy1808 in reply to KayHimm]

What does salt do

[KayHimm in reply to amy1808]

Don’t take it! I thought you had already been diagnosed with POTS. If you did have POTS, it would increase blood pressure. But it can increase blood pressure too. It could could be very dangerous for you because of your APS. Again, I was just asking because I thought, based on your post, that you had POTS.

[KellyInTexas Administrator]

Yes. “Mild and early “ diagnosed via tilt table testings.

[KayHimm in reply to KellyInTexas]

How do they treat your POTS?

[KellyInTexas Administrator in reply to KayHimm]

Sorry- just seeing this, Amy.

Important not to become de conditioned with POTS- mild exercise- recumbent bicycling. ( I’d advise stationary with APS and bleed risk with injury.)

Build slowly to tolerance.

My POTS Specialist Neurologist have an excercise chart just for this-

I’ll fish out my noses and post in a day or so- “ watch this space “.

I’ll make note of salt intake as well, bearing in mind you have not been diagnosed.

This will be from neurologist Dr Pearl Jones, MD. San Antonio , Texas

[MaryF Administrator]

No, not so far, however lots on here do have it. MaryF

[KayHimm in reply to MaryF]

That is interesting that many people have POTS here. That almost confirms that anti-phospholipid antibodies correlate with autonomic dysfunction. I am unusual, I think, in that I am low level antibody positive but have never had a clot. Yet I have the autonomic dysfunction. We could provide a good research opportunity!

[KellyInTexas Administrator]

A littlle salt, and do not become de -conditioned.

Mine is mild, as I say.

I’m not at home just now- I’ll look back at my notes from London Lupus centre. Prof Natasha Jordan recommended some products called Deliciously Ella. She’s a UK known person and has dysautonomia. She avoids glutens, and I believe she has POTS!

She’s become a bit of a spokesperson in the UK.

[KayHimm in reply to KellyInTexas]

Sounds like you keep yourself in good shape. Will check out Deliciously Ella. I didn’t like the high salt diet and could not tolerate the salt tablets. Then I discovered Saltstick tabs, which are buffered. They are terrific. I just bought some great compression socks that don’t make me look like I am ninety-five and just discharged from a hospital. They are made by Sigvaris. Glad you are managing well!

[gilonius]

Just wondering - does anyone have POTS with very low blood pressure- waiting to see cardiologist re this. Thanks.

[EgyptMania in reply to gilonius]

Hi there. I have always had low blood pressure and was told how lucky I was!! Now I have been diagnosed with a variant of Pots the consultant has put me on medication to raise my blood pressure and lower my heart rate. He believes this will help reduce the spikes when my blood pressure increases and then drops too quickly.

What did your cardiologist say?

[EgyptMania]

Hi Amy. I was diagnosed last year with autonomic mediated syncope which is treated the same as Pots. I have probably had this condition all my life but was always told I was OK as I had a healthy low blood pressure. My treatment for Pots includes taking medication to raise my blood pressure as well as reduce my heart rate thereby avoiding the sudden spikes and lows which causes my fainting.

I have just joined this website to find likeminded people as it can get very lonely being at home due to this illness.