Diagnosed With Pots, Have A Few Questions.

[jangle]

Edit: My name is Eric btw. I feel so special being a male when it seems (attractive) girls get this condition!

I want to thank anyone for reading this, honestly one of the greatest feelings to have is to know what's going on, what to expect, and to have a plan to address it, even if it is totally out of control.

Right now I don't feel like I have sufficient information. I'll try to keep this as brief as possible.

I started feeling chronically lightheaded around the age of 17, especially upon standing up. Doctors attributed it to anxiety, (I also have two anxiety disorders) and I believed them somewhat. I remember I wanted a tilt table test back then, but the doctor checked my BP upon standing and it was normal. Fast forward to now, I'm 23 years old still feeling lightheaded only now I had a TTT and it showed my HR goes to about 120-125 bpm upon standing. (From 70s) I do think anxiety has some component in this as my lightheadedness gets really bad during panic attacks (I have panic attacks daily) and when I purposely hyperventilate (I think I might be hyperventilating all the time)

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Questions

I asked my doctor if having POTS causes brain damage, and he mentioned the brain has an auto regulatory system that prevents this. Still, I've read studies on mice with chronic hypoperfusion that showed alterations to brain cell function.

1.) Does POTS lead to permanent brain damage?

2.) Does having POTS put us at a huge increased risk of strokes?

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Treatment options

1.) I started to exercise last month before I knew I had POTS. I got up to about 30 minutes of jogging 6 times a week. Unfortunately I didn't keep this up and stopped about 4 weeks later. Now that I heard exercise can be a treatment for POTS I'm starting up again, and I might want to try to incorporate some weight lifting as well. However, I didn't really notice that much of a difference after 4 weeks of jogging, so I don't know how much I can expect to improve, but the study I was reading showed a 12 week exercise regiment of slightly higher intensity so maybe I'll improve if I just devote more to it.

Has anyone undergone a rigorous exercise program (12+ weeks of 6+ hours/wk heavy exercise) if so, what were your results?

2.) I got started on Midodrine, I've taken 5 mg doses, and I get all kinds of goosebumps in my scalp, it lowers my standing HR but doesn't seem to effect my lightheadedness. Is this normal in the course of midodrine treatment? How long until improvement can be expected?

3.) I put about a teaspoon of salt in a water glass and find that improves my lightheadedness about 30-40% seconds after drinking it, but that feeling only lasts for a few minutes before I go back to my Potty lightheadedness. I don't really know what to make of that, can anyone suggest something to make the effect last longer?

4.) I ordered 30-40 mm hg compression stockings and I plan on combining this with an abdominal girder, has anyone been significantly improved from this combination of clothing?

5.) Has anyone suffered from the chronic lightheadedness and found relief from it? If so what did you do and how much did it help?

Thank you for taking the time to read my questions and I appreciate any information you might have. I'm really in the dark as to what my prognosis is and how I can get better. But I appreciate this forum very much, you all seem very nice and supportive and I hope that as I learn more I'll also be able to contribute in the future.

As always, be well and get better!

[mully2014]

Hi Eric!

I've been on Midodrine also and had just about every symptom that they know the drug can cause like the goosebumps on the scalp. For me these symptoms didn't improve but it can take up to 3 weeks to see a difference in the symptoms.

For the salt stuff, I would talk to your doctor about adding in the med florinef it will help you retain the salt ( my younger sister is on this and it works great for her).

I hope this can help and that you will get relief soon!

[Kirsti]

Before I got the symptom of fatigue, I was able to build myself up to do intense cardio exercises for over an hour each day. It definitely was the one thing that made me feel almost normal.

[Katybug]

Hi Eric,

Sorry your got the POTS diagnosis but glad you found this forum.

I am on Florinef and have found that I have to really salt load (900+ mg at a time) to feel beter for a couple of hours from it. Also, you have to take in lots of fluids with the salt. The Florinef would, as someone said, help you then retain the salt and fluid.

I use compression stockings and they definitely help me. I don't use the girdle so I can;t comment on that. You ordered a pretty high compression so don't be surprised if your body feels funny when you start wearing them because all of a sudden you will be shifting blood fror your legs to your upper body and you might feel wonky until your body adjusts.

We have talked many times on this forum about the long term effects of POTS and there doesn't seem to be a lot of good research and answers on this topic, so for now, I think most of us wonder what our long term outlook might be from this.

Hang in there and keep asking questions...

Katie

[ramakentesh]

Hey man - another male here.

I've had POTs for ten years and Im still alive and I can still think. I tend to not handle stress as well though but I havent had any permanent brain problems that I am aware of. Yet anyway

I have worked full time for all of that ten year period but I wont lie to you - some times its been ok, other times its been an absolute struggle of all my wits just to survive it. If you try to work, watch stress and remember that when you feel well its easy to overdo things and pay later (xmas party in 2009 when i drank excessively as an example).

Not sure about the stroke thing. Not much in the way of longtitudal studies. People with conditions like Soldier's Heart which were similar to POTS tended to get better according to some older studies and lived long lives.

Exercise is definately a big helper to getting more functional and improving lightheadedness which is also my main problem.

Other things that I have tried over time include Florinef (bad reaction unfortunately), licorice (used to work an absolute treat - the best treatment I ever found but made myt adrenal surges get worse in 2008 so Im holding off on that for now), DHE (a vasoconstrictor similar to midodrine which was so-so, and I developed tolerance to it quite quickly for what ever reason), beta blockers - (make me feel relaxed and calm but more prone to fainting.) and butcher's broom (which worked wonders for a few days and then stopped working and made me feel worse).

Best short term remedy was the butcher's broom - best longterm strategy was licorice and exercise.

Im about to trial mestonin and Im hoping I get some relief. Wish me luck.

If I look over the ten years I had maybe 25% of the time where its been very bad, and 50% of the time where its been managable so I guess so far Ive been lucky for what ever reason.

Another saving grace is that I also have ankylosing spondylitis. This means that Im no longer eligible for studies on POTS which is annoying because i used to pump them for info on those occasions, but it also means that sometimes my body decides to attack my back and joints rather than pump me with POTS and my POTS becomes less of a problem.

[icesktr189]

I came down with POTS at 17 too and now I am 22 years old and it has gotten worse for me. BUT I dont have permanent brain damage and usually I can think (unless I am having a really bad brain fog day

[jangle]

I just got my compression stockings, I've worn them now for about 3 hours and I'm feeling a lot better. My standing HR is now in the 90s as opposed to the 110s, I still feel a little headachey and lightheaded but hopefully these will pass. Has anyone noticed continued improvement with stockings or what you get at first is pretty much it?

[Katybug]

My initial response is pretty much what I get every day that I wear my stockings. Every once in a while, I will actually get a little more symptomatic from putting them on but I think that's because my BP can be a little up and down.