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Hello,

Is POTS a permanent thing that needs to be managed for the rest of life or do some people just take some meds and moderate their lifestyle for a while and then go back to 'normal' life?

Also, if it goes untreated is it likely to get worse? Does it generally get worse or does it go away by itself sometimes?

It may be a silly question but i seem to learn best from questions. I keep doing research and getting major mind fog and end up more drained and confused than when i started 😅... And i still have months to wait before i can see a specialist.

I would really appreciate your sharing your knowledge 🌻

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I think it depends on the person, honestly. Apparently if it starts in your teens there’s a better chance of you “outgrowing” it and symptoms generally disappear over time. However my symptoms started after I was down and out with mono for a while when I was 18 and I’ve not been right since.

Medications and life style changes are a great way to help manage symptoms, but it may take a bit of tinkering and trial and error until you find the right combo that works for you. Some people do great for years and years on the same regiment and go into a remission sort of state. Others may continue to have surges, have symptoms that continually wax and wane and unfortunately some people get worse over time. 

It really just depends on the individual I think. Having knowledgeable, dedicated doctors and supportive family/friends can make a huge difference in getting back to the “normal” swing of things though :)

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41 minutes ago, Mikayla said:

Hello,

Is POTS a permanent thing that needs to be managed for the rest of life
At this time there is no cure but remission is possible, expect to swing in and out of symptoms. 

or do some people just take some meds and moderate their lifestyle for a while and then go back to 'normal' life?
I think most of us take meds and moderate our lifestyle. Avoiding triggers is a big help, getting enough water and electrolytes and exercise all help too. I haven't returned to 'normal' life and really don't expect to. I have a 'new' life, a 'dysautonomic' life. 

Also, if it goes untreated is it likely to get worse?
Yes. Brain fog and bad decisions go hand in hand. Drinking more water, eating a healthy diet, getting exercise, and taking your BP meds will improve your condition. 

Does it generally get worse or does it go away by itself sometimes?
Remission is possible but it must be achieved with effort, see above.

Does is go away by itself?
Generally, no. But it can be managed with medicine, more water and electrolyte rich foods, exercise, etc. 
 
It may be a silly question but i seem to learn best from questions. I keep doing research and getting major mind fog and end up more drained and confused than when i started 😅... And i still have months to wait before i can see a specialist.
Email yourself the pages you've learned from or copy their urls into a word program. Or do like me, and read something five, six, 17, 18 times before it's understood; I don't give up and keep plugging away at it. Brain fog happens, don't knock yourself too much over it because we are all there with you. Learn to keep notes, make lists, save stuff to files, etc. 

I would really appreciate your sharing your knowledge 🌻
The people on this forum are very good at sharing experience. Dysautonomia is life changing. This is a good place to find some caring suggestions. 

 

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Thanks so much to both of you . It is really comforting having people who understand and share their experiences... Makes me feel a little less alone in this challenge.

Good suggestions WinterSown. Thankyou.

It really is a wonderful supportive forum.

Today I saw a different GP who has never heard of Pots, basically shrugged it off and said i just need to work on my mental health and it will clear up.  Its really confusing with so many different opinions.

But it seems the physical symptoms affect my mental health.. 

I have to wait for 2.5 months to see a specialist who can prescribe the meds like midodrine. My GP cant do it for some reason i cant remember.

Until then i will just keep up the fluids, electrolytes, gentle exercise and hope. 

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2 hours ago, Mikayla said:

But it seems the physical symptoms affect my mental health.. 

I

@Mikayla - that is true for dysautonomia and hence do uninformed doctors blame it on anxiety. Our symptoms are scary and the never knowing when it hits makes it worse too, so it is no wonder we are scared - but the anxiety is caused by the symptoms, not the other way around. Brain fog and frustration over symptoms and the dismissiveness of the medical community and uninformed family and friends contribute to feeling depressed b/c often we are alone in our plight. --- I am sorry about your new GP, I would not stay with him since he is not up-to-date on dysautonomia and will not be able to treat you for it. Although you will soon see a specialist - you will still need a knowledgeable cardiologist or PCP to help you with the everyday up-and-downs. --  You are doing a good job informing yourself - that's what we need to do when the docs don't. My PCP had never heard of POTS when I suspected it but he listened to my research and learned along with me. Now we are an unbeatable team and he works well together with my cardiologist and autonomic specialist. Look for a doctor who is open to learning about dysautonomia and listens to you. Best of luck - keep us posted. And ask away -- we all have been through it!!!!!

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POTS seems to be a life-long condition (unless you get it as a young kid). Depending on your underlying cause, you can make the symptoms go away.

In my experience doctors seem to treat the symptoms and send you on your way. 

There is a lot of trial and error to try and manage your symptoms. But it is possible to live a "normal" life. It may not be exactly the same from before you got sick, but it will be loads better from the point you got sick. 

I am still searching for my underlying cause in the hope I can "magically disappear" my POTS. I hate the idea of being on meds the rest of my life. I am only 32. But I like being able to enjoy my teenage boys' life. So I take my meds :D

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11 hours ago, Mikayla said:

Also, if it goes untreated is it likely to get worse? Does it generally get worse or does it go away by itself sometimes?

I feel that in my case not having any effective treatment has made things worse over the 4 years I have been unwell due to deconditioning. If you are able to get treatment that lets you be on your feet and active, that in turn helps lessen symptoms in the long run. If you are very symptomatic and do not have any help, you lose muscle tone, blood volume and heart muscle mass. I have tried a number of treatments that either didn't work or lost effect after a while, but for me there was a long delay in accessing any treatment at all by which time I had already lost a lot of ground (I was not an athlete but was physically fit before sudden onset.)

My advice is keep pushing for appointments and treatment and keep moving as much as you are able.

B x

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19 hours ago, WinterSown said:
19 hours ago, WinterSown said:

Yes. Brain fog and bad decisions go hand in hand. Drinking more water, eating a healthy diet, getting exercise, and taking your BP meds will improve your condition

 

 

8 hours ago, bombsh3ll said:

I feel that in my case not having any effective treatment has made things worse over the 4 years I have been unwell due to deconditioning. If you are able to get treatment that lets you be on your feet and active, that in turn helps lessen symptoms in the long run. 

 

Thanks again everyone,

I am curious what kind of exercise you suggest. I usually can manage a 15minute walk or some gentle pilates or stretching, sometimes more or less... Some days i overdo it and then pay the bedridden price for days afterwards ... But i dont want to let that put me off. Its easy to get scared of overdoing it and then avoid exercise and contribute to deconditioning.

Any advice on how to know when your doing too much? Do you use a heart rate monitor or any other method to measure your ability for that day or do you just try to 'feel' how much is enough? I didnt realise it at the time but i used to be quite fit (exercising everyday as well as being a massage therapist.) . So i really miss the endorphins from fitness and i am keen to avoid further deconditioning. I am booked into a POTS exercise physiologist but have to wait till next year so any advice to tide me over till then would be helpful. 

Thanks 🌻

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8 hours ago, Mikayla said:

I usually can manage a 15minute walk

That is great, I would definitely continue with that, as many times a day as you can! I can sometimes manage 10-15 min on my treadmill in the evenings as that is when I am at my best after fluid and electrolyte loading all day. I am not able to do it earlier in the day though. 

I also bought a recumbent exercise bike and use that for up to 30 mins most evenings to maintain muscle strength in my legs and heart. It hasn't helped me but it may have stopped me from becoming worse than I am. 

It is great that you have access to an exercise physiologist familiar with POTS - there is nothing like that in the UK, you are basically on your own. Sorry it is a long wait though. I and am sure many others would love to hear what they have you doing when you get there, please do post about it!

B x

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19 hours ago, bombsh3ll said:

It is great that you have access to an exercise physiologist familiar with POTS - there is nothing like that in the UK, y

Hey Bomb, yes i am hoping they will be helpful. They do Skype consultations if that is feasible for you. In case it is, this is their website:  https://www.activehealthclinic.com.au/

Also I found this site interesting and full of helpful tips and exercise suggestions although it is officially for cfs it could be relevant for POTS too.

http://cfsrecoveryproject.com/how-to-benefit-from-exercise-even-if-you-have-chronic-fatigue-syndrome/

Best wishes to all ❤

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10 hours ago, Mikayla said:

They do Skype consultations if that is feasible for you. In case it is, this is their website:  https://www.activehealthclinic.com.au/

Wow that is really helpful thanks, I've just sent them an enquiry about this. I have been trying to exercise by myself since becoming unwell but would really like some professional guidance from somebody familiar with orthostatic problems. 

B x

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As far as exercise, our chiropractor always says "light done right".  Doing what you are doing sounds perfect!  Everyone is different, as they've all said above.  I do have friend, however, that had severe POTS as a teen and she would pass out at school, in restaurants, walking down the street, etc. then she just kind of "grew out of it" as they say.  She's older than me, about 65, and quite a few people in her family have EDS and POTS.  We compare notes all the time!  She's the only one that I know of, however, that actually improved as she aged.  EveryBODY is different!😊

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