A question about POTS improvement times

[Greyhound]

This is probably a really stupid question, but supposing I was diagnosed with POTS tomorrow (I haven't even got my appointment letter yet, but just supposing) and I was started on some kind or treatment straight away, how long should I expect it to take before I see significant improvement (particularly fatigue levels, as that's my biggest problem)? If it helps, I'm thinking it might be hyperPOTS. Is it likely to be months? A year? Three years? Or does it vary so much it's not even helpful giving a guideline? What are people's experiences, please?

[haugr]

It varies.  The first challenge will be getting diagnosed.  There are not many doctors that are familiar enough with pots to adequately treat it.  I would recommend being patient and trying out multiple doctors until you find one that understands pots and seems willing to work with you.  You can expect to go through a series of tests to rule out other problems which will likely take weeks or months.  You can also expect to have to try out many several different medications and dosages, sodium supplementing amounts, etc until you find what works for you.

There are a few things that make this process so difficult.  First, there are not many doctors that have experience treating it and the symptoms of POTS are confusing to most doctors since they aren't isolated to any particular system.  Second, there are multiple underlying causes of POTS.  The term POTS is a really description of one of the main symptoms, and not the underlying cause.  Finding the underlying cause can make a big difference in how long it takes to get better.

In my case, it took about a month to get diagnosed, another 6 weeks before I could function, and another 6 weeks before I felt relatively close to being back to my old self.  But I was lucky, i think it often takes longer.

[Greyhound]

Ah, that sounds quicker than I thought! I think I might get to see a POTS specialist (it's at the Queen Elizabeth Hospital in Birmingham, UK), although my first appointment is with general cardiology.

Still interested in hearing others' experiences, especially from those with hyperPOTS. Just want to get a general idea of the average.

Thanks

[MomtoGiuliana]

My specialist told me, when I was diagnosed, that the average time to "recovery" was 4 years.  I recovered in about 10-12 months--to about 95% function that I had prior to illness.  Patients may still need meds after that time and may still have relapses.

[cmreber]

I was diagnosed with Hyper Pots in early 2011 and it has been an up and down journey for me ever since.  Once I got on meds, etc., it took me probably about 6 months to get to about 75% function, and then it has fluctuated from there over the years.  Sometimes I will get to feeling around 95% and other times, I'm more like 25%.  I'm still on meds, though a much lower dose the past couple of years, and the past 6 months I have been making really great progress with exercise, which has kept me more like 80-90% functionality. 

[MoMo]

I have had POTS for two years. I was diagnosed almost a year ago. So far no improvement yet. Still trying to find a treatment/medication that works for me. 

[angelloz]

Hello,

I was diagnosed about 6 years ago. ( I was 51 when diagnosed. I have improved slowly but doubt I will ever be cured and I still have relapses. Have never found the underlying cause and also have a MCAD diagnosis.

[AissaJ]

My mom refused to have me on meds, so we just do home remedies and stuff like that. I have my ups and downs and i just kind of figured it was a life long sorta thing. My mom just put all of my problems down to my lifestyle, like what i ate and my exercise and stuff like that. So we started doing more organic foods and more raw dairy products. And because raw dairy is so expensive, they decided to start a farm. Now we have cows, chickens, goats (goats milk is really good for your digestive track), pigs, and we grow most all of our food. Since we started eating healthier and because of the farm i get lots of exercise, i dont get many of the symptoms and spells quite as often, though i still have them. 

[WinterSown]

My doctors have never discussed a recovery or remission date with me. I am doing neurotherapy and was told it would help lift the fog and that it would take a long time but it would happen. I am having some improvement but I am still a long ways from whom I used to be. POTS effects everyone differently so what and how you learn to control your symptoms will be unique to you. I just got back from a long walk with the dog and I am sitting here eating potato chips, I cannot decondition and salt helps. 

I wish you luck and a speedy diagnosis.

T

[Weyland]

It just depends on the individual.  I was diagnosed in Dec 2016 at Mayo , so it's been about 6 months and I haven't had any improvement. I think I'm actually worse..

[ramakentesh]

There are actually nearly no longitudinal studies in POTS, there is currently no agreed delineation or phenotypes within POTs, and most of the suggested underlying causes are equivocal and have not been replicated in multiple studies.d

When a doctor tells you that patients get better within a specific time frame he or she is basing this either on their own clinical experience (anecdata) or from review documents that have little supporting evidence. The truth is this is probably unknown.

When a doctor or a patient diagnoses a patient with 'hyper' POTS all they are doing is describing a presentation rather than a separate etiology:

https://ww2.mc.vanderbilt.edu/adc/42008

Over the years Ive noticed some patients get one long boute of POTs and then recover. Some relapse after decades. Some relapse and remit over and over. Some relapse and remit and slowly get worse. Some are always the same and never improve and sadly a small minority stay bad and gradually get worse.

 

 

[Debbie Rose]

I was diagnosed last year but feel I have had it for over 8 years with my first symptoms of extreme heat intolerance with severe fatigue following a baseball game-temp of 78 degrees F.  It worsened while under the stress of working-became stressful with new "Changes" of job being difficult to meet. I think I had an adrenergic response every day I tried to work. It got better when I went on disability but ANY stress can make it extremely bad. I have a good day or 2 then 3-5 bad ones...that's about my routine. I try to continue my routines despite the ups and downs. Always hydrated,salted,trussed up in compression clothing,eating small meals along with daily exercise....but this has been my norm"" for a year now...which is better only because I have learned to manage it. Unfortunately I never have good weeks, never have had?? whichever LOL...my memory/brain fog persists,along with fatigue, HR and BP issues. Dizziness is rare now IF I wear compression clothes and get up and down slowly. Lately, if I sit too quickly my heart will pause and slow to 20 beats a min for about 10 seconds-I feel like I am passing out...but then my HR goes back to 45-55 bpm-its normal resting rate....something new...but my heart studies are all normal-HaHa. Anyway, that is me

Debbie

[cmreber]

From what I have seen and read, it seems that a lot of time, "recovery" time comes down to the type of POTS, what caused it, etc.  

[Linda Spicer]

For me it was about 1 1/2 yrs before I found a doc who ran necessary tests and  properly diagnosed me with POTS. Then some adding and adjusting meds took perhaps 3 mos, but I began feeling better within two months-/although still quite tired and trouble concentrating for work. I did keep working tho. I did much better with meds than many, many people. 

[halffull]

I felt better within a couple months of diagnosis and felt like I was at 80-90% for about 3 years and then things started to go down hill steadily since then. My current specialist says there are usually up and down cycles for POTS patients. 

My first specialist at Mayo Clinic, Dr Goodman said that POTS usually goes away in a person's 40s, which another MD with POTS knowledge just repeated to me recently. I don't really believe that is the case for all people though. Seems like plenty of people are diagnosed with it after 40 or continue to have it through their 40s.