Hyperadrenergic Pots Remission?

[Jwarrior77]

Anyone out there who has experienced or know of people who have the hyperadrenergic form of pots going into remission? I know it's possible with the more common form however I haven't heard much of the hyper pots going away. I want to stay hopeful thank you. Any input is appreciated.

[Scout]

I have hyperPOTS, and I must admit, I have not heard of anyone with it going into remission.

That's certainly not to say that it's impossible. I'm sure there are people out there who have gone into remission. I just have not encountered them on any forums etc, but I do hope they're out there!

On a positive, there seem to be quite a few people who find meds that work really well for them, and they can certainly have a drastically improved quality of life. HyperPOTS can be tricky to treat, sure, but it's absolutely possible to find the right med combo, and lifestyle changes etc, that do improve things a lot.

Definitely keep that hope. 

[Pistol]

I agree with @Scout. I have hyperPOTS for 10 years and do not expect to ever go into remission but I do have times that I feel better than other times. I do know of some members here that have hyperPOTS and can go years without significant symptoms but then get flares inbetween.  

[KaciCrochets]

I have hyper POTS and was living with few symptoms for three years, until I had a bad flare in August. My life has never been normal, like I have never been able to hold down a job, but I am generally functional most of the time and until recently no one would have guessed I am chronically ill. I don't know if hyper POTS can go into remission, but it can definitely become something I forget I even have.

[MTRJ75]

It's going to be difficult to get the answer you want here for two reasons: 

First, the people reading and replying are generally struggling. Healthy or recovered people are unlikely to be spending a lot of time in a forum like this. If they've recovered, they're probably out there living their life. This is the last thing most of them might want to be reminded of. 

However, I've seen some forums where people have claimed to have recovered from certain conditions and when they come back to post about it, often, they are not very well received. People might be skeptical that they ever really had what they claimed to have in the first place or they might be suspicious of someone trying to sell some kind of unrealistic cure. 

I truly believe there's an answer to every question. Sometimes it's just that answers haven't been found yet and that can be incredibly frustrating. I know people recover from POTS or ANS dysfunction in general. I don't know what the % is or what specific subsets of conditions are more or less likely to be recovered from, but if people have found solutions or recovered from any of this, why shouldn't it be possible for someone to eventually figure it out? 

[stephsurf]

Good Morning,

I was diagnosed back in 2014 with hyperPOTS. I was terrible for around two years and then slowly but surely went into some form of remission. Although my HR was still elevated in comparison to a normal healthy person it was nowhere near what it was when I was initially diagnosed.

 

Like a few of you are saying on this thread the people in remission will be very unlikely to still be responding to these forums! That sure was the case for me. However a recent viral infection back in August has flared my POTS again. Not to the point of being as bad as it was but definitely incredibly symptomatic/bed ridden to some extent. Of course as soon as my symptoms came back I’ve been browsing these forums again. So when I saw this thread I wanted to at least reply and give some hope to those of you with hyperPOTS... in my case it won’t go completely but I was living my life and not giving a second glance to POTS in some good 3 or so years prior to this flare! I’m hoping the same happens again this time. 

 

Any questions please feel free to ask! 

[badhbt]

I have hyperPOTS and have gone into remission.  Just to give you some hope!  I have had up to 5 years of remission.

[Jwarrior77]

Thanks guys for the replies and hope. I didn't mean to sound depressed or pessimistic in my original post as I really do believe in having faith and hope. I also believe that there is a cause and answer to every symptom we feel. It's not some phantom invisible illness even though at times it may feel like one. It's just we don't have all the answers right now to what's going on. On a side note I know that Dr. Diana Driscoll was diagnosed with Hyper adrenergic Pots and she hasn't dealt with symptoms in years so it's definitely possible.

[p8d]

I have had hyper POTS for 5 years and am still refractory as far as hypertension and fatigue go.  Right now it seems that the research is zeroing in on autoimmune causes and hopefully better treatments. See the videos from the Dysautonomia International 2019 annual conference here https://vimeo.com/dysautonomia I have hope for better testing and more targeted autoimmune therapy in the future.

[MTRJ75]

On 10/28/2019 at 9:03 PM, badhbt said:

I have hyperPOTS and have gone into remission.  Just to give you some hope!  I have had up to 5 years of remission.

Do you remember anything that might have led to your remission? Was there a particular mindset? I've read things about people more at ease with their symptoms potentially being more likely to recover. What we resist persists maybe. Much either said than done of course. 

Edit: Also, thank you for coming back and posting even when you're well to give the rest of us some hope.