Can POTS Progress?

[d4g7]

Hi Everyone,

I've posted on here many times recently, and had so many supportive comments.

I had an appointment with my neurologist yesterday, and I am wondering if POTS progresses, and if so, to what level?

I have noticed over the past few months, that I am getting more and more frequent spells of fainting and tachy (the neurologist noticed that I had a strange gait/gate (sp?), and thought it was to compensate for the feeling I get from sitting to standing, and the lightheadedness that follows - it seems I get up and walk with my feet quite far apart to help steady myself.

Also, I have noticed that I have had numbness and pins and needles in my hands (especially my right hand), along with diarrea, and a little bit of incontinence. I wouldn't normally discuss this with strangers, but know you won't judge.

The most disturbing thing for me is total impotence - and I mean total!

The neurologist said that all of these things are related to the autonomic nervious system, and has ordered a battery of tests - full blood works, diabetes, HIV, leukemia and all sorts of things - I swear I have never had so much blood taken from me before.

I also have to give her 24 hours of urine, and 3 days of faeces, along with another feacal sample that as the pathologist said, needs to be very fresh when they get it, and as I have diarrea, she needs, in her words, both the curds and the whey!

She didn't tell me exactly what was going on, I am just guessing she wants to rule out a few things.

Anyone experienced these other symptoms? What could be going on?

I'm a little bit scared being tested for all these nasty things...

[Ernie]

Hi,

I will tell my experience but if you don't want to read it then skip my post.

I had a relatively normal life until 5 years ago where I became bedridden, could ntt wash myself, feed myself or even go to the toilet. I had to be in bed (use the bedbad), sup?ne 24 hours a day. It took 30 months before I got a diagnosis and another year before I was able to walk around the house. Now we are 5 years later and I am in an electric wheelchair when I go out and a couch potato in the house.

My life is very limited and I am still looking for the doctor who will find my magicl pill.

Not all csses are as severe as mine but it's my reality.

[Guest CyberPixie]

I'm in bed, unable to wash, unable to do anything very much. Lots of times, barely able to breathe, extremely weak, extremely tired, lots of pounding, racing heart, skipped beats. Numbness in mouth, throat, all over. Earlier this year was completely out of it, not aware of time passing, who I was or where I was. Too many symptoms to list really.

[yogini]

You will see stories on this board of people improving and others who stay the same or get worse.

we are all so different. From what I have read and been told by my doctors, most people improve over time with the right kind of treatment. I know that I am MUCH better now than when I first got POTS. Of course I have weeks and months when my symptoms flare up, but things eventually improve. Those times are scary and I always wonder whether I am regressing. I know it is hard. But my doctors have told me that the ups and downs are a normal part of POTS and don't necessarily mean you are getting worse.

Hang in there,

Rita

[dianaD]

Hi,

I just wanted to tell you (or remind you, if you've heard it before), that beta-blockers can cause impotence. And it looks like you are on a high dose of one of them (was it propranolol?).

I hope that your tests come back OK. I was always hoping that something would come back positive with my testing, actually. At least then we could know the enemy and fight him. It seems like with POTS, you just try to cope, but can't really fight. Makes me nuts.

I also have numbness in my right hand and diarrhea (alternating with constipation - now isn't that just lovely!).

Please let us know how your tests come out!

Hang in,

Diana

[MightyMouse]

autonomic symptoms can wax and wane over time-- for some, they may have long periods of very little symptoms alternating with periods of more serious symptoms. Others have fairly constant symptoms all the time, and their symptoms can vary from nuissance to completely debilitating. Some are pretty disabled most of the time with increases in the level of disability when there are times of stress on the body, either physical stressors like illnesses or emotional stressors that strain the autonomic system further.

Unlike progressive illnesses like parkinson's or als, POTS is less predictable. Every person's body repsonds a bit differently across a broad range.

Nina

[Dizzy Dame]

I think I'm slowly improving. When I first fell ill, I couldn't wash myself, or even sit up for more than a few minutes. Now, I can walk around the house, and can go outside in my wheelchair. I'm taking physical therapy, and am getting stronger. On my best days, I can even cook myself dinner (sitting on a stool in the kitchen).

My pulse still skyrockets when I stand, so no change there, but my blood pressure seems to be stablizing a little bit: when I first got sick I'd be 100/70 laying down (pulse 53-55), and 70/40 standing (pulse 120-140). Now I'm 117/80 laying down (pulse 55-60) and 100/70 standing (pulse 120-130).

This sounds like a minute difference, and it really is, but it has been the difference between beign totally bedbound and being able to care for myself.

I don't know if this improvement is due to diet/excersize/treatment or if my POTS is beginning to resolve itself. I guess I'll see as time goes on.

As you can see from the responses here, prognosis is varied. Some improve, and some worsen. The only way to tell is by waiting and seeing. But hey, maybe you'll be one of the lucky ones!

Lauren

[dizzygirl]

hmmm.. this is a good topic.. and good question too...

In my case my pots has gotten progressivley worse... I have had pots my entire life... but as a teenager I had some what of a functional life.. I was able to complete high school by getting a GED and having a tutor who came to my home everyday.. so it was one on one... and I was able to work.. even though I went through spurts taht I missed aot of work.... so I had good spells and not so good spells...

over the last 3-4 yrs since I got really sick i've been more bad then good.. and at some points was able to go to college.. the stop and go back.. repeated this cycle for over 1yr 1/2..but i have hit a road block so to speak...

In my case my docs feel that there is something more going on with me other then pots.. and they at this point do not know what that something is.. so maybe if they could fiugre out that "something" my pots wouldnt be so terribly bad.. so for me pots has become progressive... but i hold tight on to my faith and hope...

Pots and the severity and level of functioning is different for everybody.. as has been allready mentioned.. alot of people with pots do improve with treatment.. and some others for reason probably unknow at this point dont...

good luck to ya in your testing...

Linda

Edited December 3, 2005 by dizzygirl

[persephone]

Hello Mister sensitive and thoughtful bagpipe player who probably looks fantastic in a kilt:D

I'm going to offer you some hope now by telling you my experience.

I have been very sick with POTS for over a year now. I thought that once it was diagnosed, the cure came as aprt of the package. The diaqgnosis hasn't empowered me in any way- I still have the same symptoms and face the same difficulties which really distresses me sometimes. Why doesn't modern medicine have an answer?

Anyway, my experience is that my POTS runs in cycles. A bit like the wheel of fortune- I'm not well all the time, but I'm not sick all the time either. My cardiologist and I even had it pinned to a 3 month cycle. I know that for me there is some bearing to my menstrual cycle, though obviously that doesn't apply to you

The point I'm trying to make is that I've been really, really sick with pots- so sick I couldn't sit up in bed. So sick I broke bones when I tried to stand because I just collapsed without warning. Just two months ago I discovered my blood pressure becomes asystolic when I pass out. The last 6 weeks have been some of the worst I've ever had with POTS.

3 weeks ago I had to leave Oxford, actually be fetched by my folks and carried in from the car to the house....I couldn't eat, couldn't sit up without feeling dreadful, was flat on my back for days, unable to function, focus, even go to the loo and my bp just kept flatlining...it was horrible.

But the wheel turns....I'm back here, and better than I've been all term. My cardiologist told me to forget Oxford and just pack up and go home. Well, he can shove off! I have been walking with no stick (3 weeks ago I was turning up to classes in a wheelchair and lying flat in tutorials because sitting up made me go really, really 'funny') and climbing loads of stairs (impossible before!)...I think I'm about to enter a good spell!

No matter how bad it gets, it never stays permanent for me. I think this seems to be the case for many people on the board, especially younger people? I'm by no means trying to say everyone is like this, but I tihnk many of us are. The key is to remember that the wheel always turns.

For an interesting literary take on the wheel concept, I wholeheartedly recommend Boethius' Consolation of Philosophy, which is about someone who was about to be executed for something they didn't do. Lady Philosophy came to him and explained that fortune has no power over you if you UNDERSTAND its fickleness- hence the wheel thing. Have a read, see if it helps! Ironically enough I read it for the first time in hospital when two other patients I had spent weeks speaking to suddenly died. It made me get things into perspective. A lot.

I've gone off on a tangent (again) but I hope I've been able to offer some kind of solace!

[ramakentesh]

Most doctors and most of the literature suggests that POTS isnt progressive. Certainly there are exceptions to this story but for most people who develope POTS fairly abruptly they are likley to be worse with the onse tof the illness and then waxing and waning until eventually progressing to an improvement.

Since i travel a lot for work - i find when i move abroad or interstate my symptoms improve dramatically, but the longer Im away the worse they will be when i get back home.

I guess if the new study my Professor Esler et al. is correct about the cause behind many POTS patients then that would suggest that as half the POTS patients tested already had 100% methylation of the NET gene promoter, they couldnt get any worse. But then again this doesnt explain why this mutation occurs or why the symptoms to wax and wane.

I didnt improve for atleast a year - but when i did it was pretty dramatic - start gobbbling licorice is my advice.

[Guest CyberPixie]

Most doctors and most of the literature suggests that POTS isnt progressive. Certainly there are exceptions to this story but for most people who develope POTS fairly abruptly they are likley to be worse with the onse tof the illness and then waxing and waning until eventually progressing to an improvement.

Since i travel a lot for work - i find when i move abroad or interstate my symptoms improve dramatically, but the longer Im away the worse they will be when i get back home.

I guess if the new study my Professor Esler et al. is correct about the cause behind many POTS patients then that would suggest that as half the POTS patients tested already had 100% methylation of the NET gene promoter, they couldnt get any worse. But then again this doesnt explain why this mutation occurs or why the symptoms to wax and wane.

I didnt improve for atleast a year - but when i did it was pretty dramatic - start gobbbling licorice is my advice.

Interested in why you mention liquorice? Thats one of the natural treatments for sluggish adrenals and as POTS has almost identical symptoms to adrenal problems was wondering whether in fact yours were not working properly?

[corina]

Since POTS started, (immediately after surgery but I've been having symptoms all of my life) it slowly gets worse. After years of fighting and trying to ignore and trying to live with it I'm still getting worse, but it's so slowly that I don't notice until there's again something that I can't do. And there is a LOT I can't do anymore. But of course there's always hope and I'm holding on to that.

Corina

oh btw, can someone explain me what licorice is? (maybe it's something I haven't tried yet )

[ramakentesh]

Licorice mimics the bodies natural hormone that regulates blood volume - effectively making your body increase blood volume and thus lessons presynocope/dizziness and other symptoms.

If i take too much i feel quite unwell and get migraines, but low doses give me dramatic improvements. Works better than all the medication ive tried other than DHergotamine which can make me a little sleepy.

Apparently it increase blood volume so readily that every year after the melborune show lots of kids are hospitalised with swollen feet and fluid retention from eating lots of licorice.

[HoldOnToHope]

My daughter is definitely getting better - slowly, but surely. Some of this is may be due to getting on the right meds, but she is getting better. She was on the couch or in bed most of the time when first diagnosed a year+ ago. Now, she's out with friends, going to school part time and is constantly on the go. Sure, she "crashes" from overdoing, but it's usually worth it because she's been having some well deserved fun!!! Our doctor said that 4/6's of POTS kids get all the way well. 1/6 get much, much better with occasional relapses and 1/6 have something that continues for life. I hang onto the belief that my daugher is in the 4/6's group! Stay hopeful!!!! It may take time - maybe a few years. I totally agree with the "wheel" analogy. POTS has cycles. Ride out the lows....hang on. It will get better!!!! Optimist in Wisconsin