Can Pots Change Throughout Your Life? Also Sleep Breathing Ques

[Lindz]

I know I've been posting a lot lately. Thanks for your patience

So I am 46 now. I am hypermobile, but probably not Ehler Danlos. I had severe mitral valve issues w/ regurgitation as a child. Lots of tachy and palpitations, tingling, etc. That gave way to panic attacks as a teen. I then joined the Air Force and got in shape. Everything was good until a few years ago, when I started to have the nighttime adrenaline surges, head pressures, etc. Everything has been downhill since then and I feel getting worse because of hellacious sleep apnea b/c of breathing issues.

I don't necessarily feel dizzy when standing at first, but my heartrate does the 30 beat leap. My blood pressure is stable (always super low) and sometimes increases a bit when standing. Long extended stands are not good for me. And I don't have epsidoes so much as walking around all day feeling weird. Is that normal?

1. I have been to a millions dr's, but none too familiar with POTS yet, so all of this is alot of self diagnosis, but Im confident its in the ballpark given my history. Can POTS "change" throughout ones lifetime in terms of symptomology? I was complaining about the fact that I either stop breathing when I start falling asleep or go to sleep and wake up gasping for air with chest pain - my husband was like, yeah, you have been doing that since I met you, and I realize, he's right. Its just gotten to the critical point.

2. I have read past messages and it seems a lot of members have the same breathing issue. But mine also comes with head pressure/ache/congested issues. I really feel hypoxic while trying to fall asleep, like there Im not getting air in. Its a horrible sensation. I know that POTS is supposed to be better while supine-- is that always the rule?? I have terrible cervical cord stenosis and wondering if there is something mechanical going on as well compromising my breathing.

Thanks for humoring me. I am so terrified this is progressing. My brain is always burning and tingling. Wonder if thats a hypoxia thing. I am supposed to get a repeat brain MRI next week and afraid that they will find something.

Thanks for listening.

L

[AliceP]

I don't know but I have the same question. The key is to find a really good doctor to help answer these questions. I think often POTS improves with age (that's what I've cardio told me and seems to be the anecdotal consensus among those who get diagnosed in their teens), but at least for folks with AAG it doesn't get better.

[MomtoGiuliana]

Yes for many people, POTS improves over time. I have seen many members come and go on DINET since I joined in 2003, many improved--either due to meds, or just due to time. I was very sick w POTS in 2002-2003. I slowly improved after 2003.

[Katybug]

My symptoms and my POTS has changed. I've been I'll since 2007. We did I initial autonomic testing in 2011. We are getting ready to do it again in early Dec. because things have changed and we don't have a handle on it.

[momandmore]

I'm wondering if you've had a sleep study or had your B12 levels checked. Besides the pots stuff, I had some issues when my B12 was low.

My POTs has definitely improved over time. Two years ago I started exercising regularly and that has helped most of all. I have also gained weight, and sad as it is, I think I feel better when I'm thicker. But, like you, I continue to have days when I go around feeling weird all day even if my heart rate doesn't jump the way it used to. It still tends to be high in the mornings, though.

From talking with friends around the same age as you and me, the midnight adrenaline surges seem to be common. I would guess it's related to hormonal changes. I haven't had one of those in awhile, but I have started getting night sweats. Other than that things seem to be the same with my cycle.

[bigtrouble]

"I don't necessarily feel dizzy when standing at first, but my heartrate does the 30 beat leap. My blood pressure is stable (always super low) and sometimes increases a bit when standing. Long extended stands are not good for me. And I don't have epsidoes so much as walking around all day feeling weird. Is that normal? "

==My heart rate also goes up when I stand up. If I am lying in bed and bend up (seated in bed) (bpm = 75), my heart sometimes shoots to 112.
When my symptoms started in 2012, doing minor things was a huge problem. I would not feel tired but the heart racing and pounding was unbearable.
My blood pressures stays at about 120/80.

This sounds like Innapropriate Sinus Tachycardia.

Standing for a long time make me feel uncomfortable as well (but not always).

Yes, I also get days of walking around or sitting down and feeling just "malaise".

In 2012, it was hard for me to go for walks. I would do 15 min max, sometimes 5 min.
It improved in 2014 and I was able to do 30 min+. A few weeks ago I did 1h 30 min and started to feel like crap. I am not out of the woods yet.

[Lindz]

This is all so hard for me because until about two months ago I was still very active and athletic. Now its all catching up with me, but its coinciding with the sleep apnea, so maybe that is having more of an effect on me than I originally thought. I feel exhausted and unsteady on my feet (yet wired - can't relax). I think I was the opposite of most POTSies b/c at first I was able to exercise a lot and now I can't. I need to compel myself to try again.

Ive had a total cardiac workout, no SVT.