What level of symptoms are we meant to accept as a ‘normal’ reality of living with POTS?

[Elizaangelica]

I wonder this a lot. It’s something I’ve had to think about a lot in the past regarding my mental health (bipolar, OCD). At some point (after trialling many many combos of meds) I had to accept that maybe I wasn’t going to be able to find medications that worked any better, and the level of symptoms I had were at least somewhat better than what I’d had in the past. But the symptoms still affect me every day and limit my life. But I guess, in the most part, I’ve learned to accept that as ‘just the way it is’ when living with chronic illness.

I’m less clear what level of improvement to expect (and accept) with POTS though. While I hate the thought of staying living with the level of debilitation I currently have, at least it’s better than it was before I was treated. I guess my question is what level of symptoms is ‘normal’ to live with when we have a POTS diagnosis, even when medicated? 

[Pistol]

2 hours ago, Elizaangelica said:

I guess my question is what level of symptoms is ‘normal’ to live with when we have a POTS diagnosis, even when medicated? 

That is a bit difficult to answer, @Elizaangelica. Some people with POTS recover almost completely, whereas others suffer for the rest of their lives. What seems to be an ongoing symptom is orthostatic intolerance. Fatigue also seems to be a symptom that many suffer from, even if HR and bP are controlled. Some people - myself included - are disabled, and Others work, even full time. 

I think the biggest hurdle for many of us is the anxiety that comes with our symptoms. When at our worst it is easy to think that it will be like that for the rest of our lives. But in very few cases do the symptoms not improve or get worse. I have severe HPOTS and experienced fainting and seizures multiple times a week. Today I rarely get these anymore. This is partly due to my treatments and meds but also because I have learned to listen to my body, to respond to the faintest signals in order to stop the chain reaction of complete chaos. 

You ask what is "normal" when we have POTS - well, avoiding triggers ( like standing, heat, large gatherings etc), drinking like a sieve and eating salt like it is going out of style, wearing compression hose regardless of fashion or weather, lying on the floor to avoid fainting, using a wheel chair in stores, spending days in bed due to fatigue or flares, not being understood by a majority of people, having myriads of seemingly unrelated symptoms and going to multiple specialists ... and much much more ... this is all common with POTS. So our normal is different from how we lived prior to getting this diagnosis but it does not mean that we have to spend the rest our lives in bed just because we are in a bad flare. Often we may need medications adjusted or changed - the symptoms WILL change over time, but not always for the worse. 

[dancer65]

I agree with Pistol. I would say it’s about accepting your limitations which is really hard and try not to get frustrated on those bad days. 
I would class my self as well functioning POTSIE although working leaves me struggling at weekends and evenings to do my ordinary chores and I have accepted I need to rest. I have symptoms daily but they are mostly manageable. I make lists of what needs to be done that day (helps me remember due to brain fog ) and a list of things I would like to achieve that week , often that lists stays the same but hey there’s always another day !

I have learnt time to look after myself is essential that way I do get to do some things I enjoy . 
 

Bad days can leave me feeling very down, irritable and not nice to be around ! Taking myself off to rest and distracting myself reading, meditating , soak in a bath seems to work for me and a  couple of hours later I’m my happy self again ! I am beginning to wonder if that down feeling is due to a chemical process rather than just being fed up of being ill . 

[Pistol]

2 hours ago, dancer65 said:

Bad days can leave me feeling very down, irritable and not nice to be around !

@dancer65 - this is so true! I too get irritable when I over do it - I think it is because of the overactive ANS making too much adrenaline. This causes the vessels to constrict, less blood flow to the brain; brain fog and less ability to respond to multiple stressors at the same time ... when i have to cook with more than one pot on the stove I get so overwhelmed that I will rip the head off of anyone who asks me a questions or interrupts me ... a sure sign that I have to stop! My husband and daughter know this, so they jump in and finish the cooking process for me 💗. A while of resting and "cooling down" and I am good to go again!

[dancer65]

Ah Pistol glad it’s not just me who hets that way ! All this adrenaline is a pain . I notice they now doing a study on POTS and adrenaline causing pain in muscles and joints it will completed next year , will be interesting to see the results 

[p8d]

I agree completely with @Pistoland @dancer65. I am disabled and house bound and have been for years. I found the book How to be Sick by Toni Bernhardt very helpful in accepting my limitations. Like the others I get down and grumpy when I flare or try to do too much. Then I rest, distract myself and try to remember that I will feel better tomorrow. Another book I read when I am down is The Boy, The Mole, The Fox and The Horse. It’s a short read and it doesn’t really resonate until about half way through but I find it comforting. I reach out to others on this forum that truly understand which helps a lot. 

 

[CJ65]

@Elizaangelica we see you, we hear you!  I ask myself the same questions every day. Is this really as good as it gets symptom-wise? I remember my autonomic specialist telling me that I would improve. In my mind that meant a return to my previous level of health but that is far from where I am today. I’ve learned to honor the small “wins” like having a day with my BP and HR in relative check, or having enough energy to play with my grandson or run an errand outside the house. Some days getting dressed is a win. And some days I’m just mad at my limitations.   I was reminded this week that I can’t push my body or I will pay. I was feeling ok and got cocky-I had one activity every day (dr appt, friend visiting, etc) I pushed through and didn’t rest enough and now I have an infection. One step forward, two steps back. 
I do/did get improvement in some symptoms with the right med regimen, when I took an early disability retirement and when I listen to my body. Counseling,meds and mindfulness help my mental health and sometimes only a good cry will do. And communities like this to remind us that we are not alone ❤️

[CDNPortGrl]

It's interesting to read these answers (and a great question!) as I'm new to POTS - developed in May. I've always been extremely active so my depression levels are through the roof. I've lost count how much I cry. I have two young boys - 4 and 6 who don't have a mom to look after them. My husband is doing everything. We had the summer almost completely booked for camping trips and I can no longer go. I was an avid camper - hiking, canoeing, etc. and last summer was the first time my mom (in her 70's) ever camped with us. I thought it was the beginning of making so many more wonderful memories. To make matters worse, as my job was an Occasional teacher, I only get steady jobs maybe once or twice a year so I don't qualify for disability, so now we're down to once income which we simply can't live off of in the GTA (crazy expensive). 

Anyway, enough of my sob story since we're all going through this. But the reason why I posted this is because I had hopes that treatment would pull me back to a close 'what once was' scenario..it's hard to read that that's not reality. I guess I'm going through the stages of grief with denial as the current one. It's in many ways, similar to death. Acceptance is the last phase. 

My sister wants me to meditate like mad but after many weeks, I still haven't accomplished anything. My thoughts ramble away while I'm trying to listen to the guided meditation lol. 

[cmep37]

Don't get too downhearted - I think your level of recovery can depend a lot on what caused your POTS @CDNPortGrl I do know of a number of people with post-viral POTS who have returned to pretty much normal lives, especially once they got appropriate treatment.  Don't forget a lot of us on the board are either newly diagnosed or else pretty severely affected - people who are less badly affected are off living their lives rather than posting here!!  I have POTS secondary to hEDS and as I've been severely affected for nearly 20 years now I know exactly where you are coming from about grieving your previous life.  I would say it took me about 5 years to mostly come to terms with it and some days I still struggle.  I can't do meditation either - I do square breathing instead. Breathe in for 4, hold for 4, out for 4, hold for 4 - I find focusing on counting means you can't think of anything else and it does calm me down.

[Pistol]

41 minutes ago, cmep37 said:

 I do know of a number of people with post-viral POTS who have returned to pretty much normal lives, especially once they got appropriate treatment.

I would like to mention that most COVID Long haulers do not seem to be afflicted by the same illness as chronic POTS patients. It appears to be more of a post-viral malaise type condition that is temporary, except for some people in whom the COVID ( and even the vaccine immune reaction ) have triggered a real POTS episode that they would probably have gotten from a different virus, such as Flu etc. as well. 

[CJ65]

2 hours ago, Pistol said:

I would like to mention that most COVID Long haulers do not seem to be afflicted by the same illness as chronic POTS patients. It appears to be more of a post-viral malaise type condition that is temporary, except for some people in whom the COVID ( and even the vaccine immune reaction ) have triggered a real POTS episode that they would probably have gotten from a different virus, such as Flu etc. as well. 

That’s great to know @Pistol. I do allude to long haulers when I explain what POTS is to family and friends. Even my closest people’s eyes glaze over when I try to explain my illness but now that most of them have read about long haul Covid they seem to understand now that healthy people can turn into chronically ill people in a flash. 

[CDNPortGrl]

8 hours ago, cmep37 said:

Don't get too downhearted - I think your level of recovery can depend a lot on what caused your POTS @CDNPortGrl I do know of a number of people with post-viral POTS who have returned to pretty much normal lives, especially once they got appropriate treatment.  Don't forget a lot of us on the board are either newly diagnosed or else pretty severely affected - people who are less badly affected are off living their lives rather than posting here!!  I have POTS secondary to hEDS and as I've been severely affected for nearly 20 years now I know exactly where you are coming from about grieving your previous life.  I would say it took me about 5 years to mostly come to terms with it and some days I still struggle.  I can't do meditation either - I do square breathing instead. Breathe in for 4, hold for 4, out for 4, hold for 4 - I find focusing on counting means you can't think of anything else and it does calm me down.

Thank you so much for your response. It helps more then you can imagine. I’m still thinking that this was brought on by the Astra vaccine or a leak from a spur since a bike ride was the last thing I did. Although I did read that Gastro issues can cause it and I have that so it’s quite the large question mark.

I’m so sorry to hear that your ordeal has been 20 years. This type of thing really tests us out and what humans are capable of enduring. It’s unfathomable that you have had to face this for so long. You’re an incredible trooper and the fact that you take the time to offer words of encouragement to others, speaks volumes to the kind of person you are. I remain hopeful that with COVID long haulers, a ton of research will go into this ‘finally’ and maybe new methods of improving people’s lives will develop. It seems to be a very much forgotten ailment and no one in the science world is doing much about it...at least from what I’ve learned. If a large enough subset of the population shows POTS like symptoms, it could spur much needed change. 
 

Thank you for the breathing tip, I’ll try that!

[CDNPortGrl]

7 hours ago, Pistol said:

I would like to mention that most COVID Long haulers do not seem to be afflicted by the same illness as chronic POTS patients. It appears to be more of a post-viral malaise type condition that is temporary, except for some people in whom the COVID ( and even the vaccine immune reaction ) have triggered a real POTS episode that they would probably have gotten from a different virus, such as Flu etc. as well. 

Oh I missed seeing this. Interesting. I was in many ways hoping that more research would go into POTS due to long haulers but perhaps not in that case...

[Pistol]

@CDNPortGrl - there IS more research going into POTS since long haulers post COVID POTS. The symptoms from it ARE POTS, but many people have a mild form from it, and - hopefully - a temporary one. But since there are so many people discovering POTS symptoms there now is also a greater need to find out more about it. I personally know several people who were diagnosed with post viral POTS and - although affected by the symptoms and even disabled for a while - have made a great if not full recovery after one to two years. COVID has not been around that long that we can truly say if the people will fully recover, and we have not yet seen if Long Hauler syndrome is a chronic dysautonomia. Time will tell!!!!!

[CDNPortGrl]

10 hours ago, Pistol said:

@CDNPortGrl - there IS more research going into POTS since long haulers post COVID POTS. The symptoms from it ARE POTS, but many people have a mild form from it, and - hopefully - a temporary one. But since there are so many people discovering POTS symptoms there now is also a greater need to find out more about it. I personally know several people who were diagnosed with post viral POTS and - although affected by the symptoms and even disabled for a while - have made a great if not full recovery after one to two years. COVID has not been around that long that we can truly say if the people will fully recover, and we have not yet seen if Long Hauler syndrome is a chronic dysautonomia. Time will tell!!!!!

While it’s extremely unfortunate that anyone should ever go through this, it’s promising news that there is more research going into it. I hope that specialists start recognizing it too and not being so hesitant to diagnose it. My brother-in-law’s wife most certainly has dysautonomia but she’s not listening to me and bounces from specialist to specialist being told there’s nothing wrong with her or being recommended antidepressants. Unfortunately at this time, many people have to tell the doctor what their ailment is and then the doctor proves the theory. 

[toomanyproblems]

15 hours ago, CDNPortGrl said:

I remain hopeful that with COVID long haulers, a ton of research will go into this ‘finally’ and maybe new methods of improving people’s lives will develop. It seems to be a very much forgotten ailment and no one in the science world is doing much about it...at least from what I’ve learned. If a large enough subset of the population shows POTS like symptoms, it could spur much needed change. 

One thing I'd like to mention is I don't think POTS is a "forgotten disease." It's actually a new disease relatively speaking. It was only recognized as a syndrome in 1993. In the medical field, that's pretty new. Plus it's a very complex syndrome, causing a wide range of symptoms and appearing to have more than one cause. At this point even those subtypes aren't established. I know my doctors struggle with my symptoms.

When AIDs was discovered it was such a big deal that a bunch of money went into research very quickly (at least in research time). This research, in turn, not only helped AIDs but advanced the field of immunology, which had been stuck with the same ideas for decades. I was in graduate school during this time so I witnessed first hand the surge of new information. As unfortunate as Covid has been, research into it and long hauler aftermath may advance medical science in ways we can't predict at this time. I only hope it unlocks some of the mysteries to POTS. 

[CDNPortGrl]

Hi @toomanyproblems that’s good to know. I was reading about soldiers in WW1 dropping with POTS and how it was referred to another name back then so I assumed that it was this rather ambiguous ailment that has existed for centuries without a lot of awareness. It’s wonderful to hear that that is not the case. I would love to get to the point where the trigger is identified, so even if it was an injury or an illness, perhaps there is a key ‘change’ in every circumstance that could be addressed - a signal that can be retrained, etc. Rather then always treating the syndrome.