New to POTS - Feedback Please

HI All ~

I am a POTS newbie...or as my son calls it. POTS but no pans. Thats me!

I also have an autoimmune disease (Systemic Sclerosis), Hypothyroid, and MGUS. And well now - POTS

They feel the autoimmune disease probobly caused the thyroid issue and the MGUS may be autoimmune related as well.

How did I POTS get invited to my diagnosis party? Well - I had a few episodes where I would get tachy when I was walking (Felt like you do when you have a fever, that throb when you walk to fridge) so I would take my pulse and sure enough, I was up to like 124 just standing and up to 140 just walking to the fridge, so of course I thought I was dehydrated and drove myself to the ER to get fluids...

They agreed and gave my fluids, around 5 bags and sure enough my Heart Rate went down and I was sent home..Well this continued to happen and I continued to think I was dehydrated and thought perhaps it was due to the Scleroderma. I would go in to ER and they would pump me full of fluids and let me go,

That is until this last visit... I had a doc that noticed my HR would decrease with fluids wbut would jump when I moved, stood up or walked and he felt the fluids were just a band-aid, and that something else was going on. Which got me admitted where they recorded the phenom and saw it happen.

They didnt know what it was and since I was sinus tachy, I was again given fluids on the floor and discharged, as the Cardio stated "Sinus tachycardia is NOT a cardiac issue" - it is driven from elsewhere in the body, we just need to find out where.

So home I went... and followed up - Got the eye rolls from the Cardio and tests scheduled, but before I could get them done - Another bout of HR this time 180 - 200 and I fainted, which again got me promptly seen and admitted - However, this time a new cardio saw me and said, "With your autoimmune disease - I think this is autonomic"

They did all the cardio tests to rule out heart structure, etc,, Lung tests to rule out lung issues possibly affected by the Sclero and discharged me to be seen by a Neuro - who said "Yep sound slike POTS"

So now Im here. A lot of the mystery of the chronic lightheadedness, weakness, fatigue, overheating, easily dehydrated, headaches, excessive sweating or NO sweating and overheating - were solved. When he asked about those symptoms and I answered yes to all - it was like BINGO thats me!

I was confused since the cardio I did my F/U visit with said, since my BP didnt drop it wasnt POTS but I have since found out, that is not accurate.

I guess my questions to you all are; what can I expect.

I only get tachy with walking and standing - but sometimes it settles down after I have stood for a while. Is this normal?

Other times I wont and I will stay tachy for a while after I stand and sit a while. My normal resting HR is 60 or lower if really relaxed... but I can get up to 160-180 just cleaning house. But BOY am I dead tired after... As in like - If I clean my house for 4 hours - I cant do ANYTHING else the rest of the night.

I go from Bradycardia to Tachycardia - Is that normal?

How do I convince the Cardio close to me that POTS BP does not have to drop. He is so much closer than the Mayo Clinic MD who diagnosed me.

I drink a ton of water now, Gatorade everyday, and salt.... I have been given a Beta Blocker if I get super tachy. Does that seem about righht? What do you all use? How about for the headache?


Does that sound about right?

It waxes and wanes in intensity? Is that right?

What else can I expect, do you feel? I want to know as much as possible. There is not a lot out there.

Thank you so much for sharing!

[Ida22]

Hi,

I may have POTS but I got no dignosis yet...waiting for my doctor - but he's kind of lazy.
I recognize a lot of you symptoms.

When I was on betablocker I got a lot of headache and was brady (bpm 40). Are you taking betablockers everyday? or only when you super tachy? It may make your headache worsen if they make your heart brady...

I still gets brady somedays, and im not on any betablockers. Before i started any medication, I could have brady days. I think that bradycardia can appear with the dysautonomia. Nothing is normal og totally unormal with pots, you can get alot weird symptoms.

I hope you'll get all the answers you need and I wish you the best. There's a lot of great people with alot of knowledge in the dysautonomia forum.

Ida