POTS & Future Effects

[ethansmom]

I was just wondering if anyone knows anything about how POTS is going to effect us later in life. Especially for those diagnosed early on- I am just wondering what the long term prognosis will be, if I'll ever feel better, and what other things could possibly happen in the future with my health as a result of POTS and the medications used to treat it. I've heard that a lot of POTS patients are young women in their teens and 20's, like myself, and I'm just wondering if this means later on that it will get better or go away? Or could it get worse? I'm sure it's difficult to say in most cases, but in general, I am hoping that I don't have to cope with POTS at this level for the rest of my life. I'd like to go back to work, finish school, have more children, etc... and at this point I feel like everything is at a standstill until my health improves. Any input would be appreciated!!

[MightyMouse]

Some people, particularly those with sudden onset (such as post viral), may get better over time. Others may stay the same and others may get worse. I asked this question when I saw Dr. Grubb--for me, the answer is that I may get a bit worse, especially around menopause. Keep in mind, I've been symptomatic all my life, and this prediction is made given that little by little something else goes wrong each year...so since that's been the pattern of the past, it's likely to be a similar pattern in the future.

So the short answer is that it will be a different course for each one of us.

Nina:)

[RC-POTS]

On 9/15/2003 at 11:58 AM, ethansmom said:

I was just wondering if anyone knows anything about how POTS is going to effect us later in life. Especially for those diagnosed early on- I am just wondering what the long term prognosis will be, if I'll ever feel better, and what other things could possibly happen in the future with my health as a result of POTS and the medications used to treat it. I've heard that a lot of POTS patients are young women in their teens and 20's, like myself, and I'm just wondering if this means later on that it will get better or go away? Or could it get worse? I'm sure it's difficult to say in most cases, but in general, I am hoping that I don't have to cope with POTS at this level for the rest of my life. I'd like to go back to work, finish school, have more children, etc... and at this point I feel like everything is at a standstill until my health improves. Any input would be appreciated!!

I have been wondering this as well.   The doctors skirt around the issue when I ask. Is there long term damage to the brain from a constant lack of oxygen or to the heart from fluctuations in blood flow and blood pressure?

[Missy M]

I personally think the doctors skirt around the question because they don’t really know. There’s just not much solid research out there yet.

I can only personally say that my dizziness symptoms began 17 years ago. (Although now my docs think I had dysautonomia for many years before that, judging by long term bone damage caused by my very bad electrolyte imbalance obviously occurring for what they now think was probably decades. I’ll add that once we knew about this we stopped the bone damage from progressing further by simple daily nutrition focused on electrolyte balance. Wish I’d known sooner.)  

I’m older than some of you. Old enough to be a retired grandma. I’ve had kids and a great career.  Did I have to adapt to my physical limitations, which for me did very gradually progress over the years? Yes I did. 

In my opinion, half the battle is keeping a mindset open to constantly seeking out ways to adapt to what your body is able to do. My skills at creatively using assistive devices to keep on doing things I enjoy are quite excellent. If I want to go outside in the heat, I put on my cooling vest. If I want to stay on task even though my crazy eyes are suddenly overdilating, I put on my sunglasses (even inside my home or at church). I carry a portable stool around so I can sit at a moment’s notice (my friends are used to it and think nothing of it). 

My best advice for handling this long term is stay educated about it and always think in terms of “how can I adapt to this situation to still do things I want to do?”

While there are realistically certain things I can no longer do (like ballroom dance, which I did for years) I’ve found other fun substitutes (painting pictures and blogging). Life has gone on and I’m still having lots of fun. 

Hope that helps.