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Pots Syndrome ? Can You Really Heal ?


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I keep my fingers crossed for that day. I like to think it will. It helps me stay positive if I believe there is a light at the end of the tunnel.

It hit me out of nowhere too. Fine one day, then it hit me in the evening when I was chilling out watching a family movie

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Some people can rid of it and be largely symptom free for years say. However from what I have read and perhaps my gut feeling is that even if it goes away then there is always a chance it will come back - but it may not.

I don't want to sound negative as I have improved loads since first getting it badly last year (although I think I also had symptoms for 6 weeks in 2011) but I think once it is activated in your body then it can always come back - but it may not.

I can work full time, socialise and do many things but still not 100%.

I think now for the rest of my life I will never like very hot environments for example and have to be careful of certain trigger factors.

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I would also add that it also depends on what is causing it. If you have other conditions then I think it is more difficult for it to disappear. I have read that for POTS & NMH (which I have) many people usually get a lot better between 2-5 years. I appreciate that 5 years is a very long time though!!

As with anything it depends on the person but my immediate goal is to be as asymptomatic as possible for as long as possible.

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Achiles, POTS hit me 10 years ago and lasted for a few months. After that I was symptom free for 10 years, and then it hit me in August 2012. I am doing a lot better, but still not symptom free. Hope that gives you some hope. Have you seen any improvements in your symptoms?

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Hi Dave

NMH is Neurally mediated Hypotension. I think it can also has other names but basically on a Tilt table my blood pressure goes down upon standing for awhile. I believe with POTS your heart rate goes up and your blood pressure does not necessarily go down.

Some people with POTS also have high bp as well, whereas I don't.

badhbt - I would be interested to know how bad you were when you first got POTS 10 years ago.

AussieOI

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Anna what do you mean a symptom not a syndrome ? Yes my on set came out of no were. Badhbt I have not seen symptom improvements but the medicine helps a little They still can't find any cause after many many blood test urine test and ct scans

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Hello Achilles, oops sorry a bit of a brain fog day the other day. What I meant to say/explain is that it depends on whether your condition is a symptom of an underline cause or whether it is the cause.

Some folk seem to have POTs as a problem on it's own in others it is a symptom of a much bigger picture.

Do you feel your POTS symptoms came on suddenly out of no where or did you notice over the years little odd things not feel quite right?

There are a huge number of conditions that can cause POTs symptoms http://www.dinet.org/what_causes_pots.htm sometimes it is helpful to stand back from the very obvious POTs symptoms you have and see if any other symptom jump out at you, that are not obvious POTS symptoms?!

Ok you say that your symptoms came out of nowhere, but before that did you notice any change in tummy habits, had you changed your diet at all before onset, could you have underline absorption issues, allergies, did you change in working environment, have new flooring and so on?

To be able to get the best out of meds it really really does help if you can back track and see if anything in your pre POTs life changed as it may be a clue to your onset.

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Yes, you can recover from POTS, some people do, such as Michelle Sawicki who was one who started this forum and the POTSPlace website (now DINET). I believe the research says that those who have sudden onset are more likely to recover as it's possible that the problems may be viral and eventually some people get over it. I will not be one of them b/c my issues are genetic.

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AussieOI,

So ten years ago it was pretty bad. It hit me at work with no warning at all. I ended up in the ER with bad presyncope, slow speech, dizzyness, tingling, tremors...ect.

I did have a bad flu like illness a couple of weeks before.

I never had any work up done because they said it was an anxiety attack. I remember I kept trying to drive to work, but I was too out of it...I thought I was going to lose my job. It lasted about 3 months, then it went away.

This flare is a lot longer, but once I felt the same symptoms I knew they had to be related.

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Guest Alex

How can you test if its genetics or not ?

I believe the one place where you can get this kind of testing done is this: https://www.23andme.com/

As far as the fish oil - like Anna suggested, have you considered re-introducing it? That way you'll know if it has any contribution or not.

'Can you really heal?' ...my dr keeps telling me that this is a chronic condition and it requires life long management via meds or non-pharmaceutical methods. If you browse the forum you'll see many people who have reported periods of being perfectly healthy alternating with relapses, people who got better in time and with proper treatment, and so on.

My belief is that the proper management of POTS has to start not with diagnosing POTS (which is only the first step of the process) but with diagnosing the cause for POTS. In many cases POTS is secondary to something else and that is probably one of the biggest challenges the drs treating POTS patients face.

Also, 'healing' may be a matter of your own expectations - I'd be happy to be able to live a normal, symptom free, unrestricted life, even if that may mean taking meds for the rest of my life.

Alex

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I have had symptoms since age 7, had my "pots crash" a year and a half ago. Last summer I was sitting in a wheelchair, feeling like death. I assumed that with EDS dx that pots was something I would always deal with. Started treatment for lyme & co-infections in January and went through Rough times with herxing. Suddenly woke up 10 days ago feeling like I was having a good day. That good day has turned into 10 symptom free days! I am trying to understand it. I've not had symptom free days in probably 13 years. Not only have I had no tachy/Brady or BP symptoms, but I am suddenly not cold. My neuropathy which was pretty severe from the knees down seems to have almost disappeared. My circadian rhythm is becoming regular. I don't get it.

I went from mostly bed bound to shoveling 8 yards (4 dump truck loads) of mulch this weekend! I was on my feet working in our gardens from 10am to 9pm. It's like I healed and got superwoman strength! I keep waiting for a crash, pushing myself just to see if it's for real.

I guess the lyme meds may have done something. I did start my earthing experiment a week before I got better. I am still earthing every day for atleast 1 hour. I posted a topic on that subject.

I'm counting my blessings to be feeling so good, but am still so nervous to say "I'm better" to people and then crash hard soon!

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Gypsy,

That is very good news. When I started to recover ( I am not 100%) yet there were certain things I did and thought which were very helpful for me :

- If you have a bad day don't freak out just know that it wont necessarily last, you have had some good days so keep telling yourself it is possible to continue that way

- start to push yourself (only a little bit). For example if you haven't been out to dinner or the shops for ages - go and do it. Or maybe go for a walk.

In my opinion there is a strong psychological block that must be gotten over when trying to recover. If you have been sick for so long you start to believe that you cant walk for long, you cant do this and that. Get plenty of rest though and doing whatever you can to relax is good. Maybe introduce some gentle exercise as well, but start very slow.

Getting better is a process and there are up and downs.

Aussie

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Also (I know I sound like something out of a self help book!!) but I reckon you have to set goals as well to try and keep moving forward. They can be the smallest thing it doesn't matter. I also bought an exercise bike and started on that. At first I could only ride for 1 minute or so. I was that bad.

On my good days I would really try and enjoy them as much as possible and have as much fun as I could. In between those days for sure I had some really awful days when I felt bad physically so on those days I would try and relax.

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Im probably repeating myself but I know personally at least two people that have COMPLETETY recovered from POTS. Both were sudden onset POTS and both worry about relapse. But both report that they are completely fine.

Normally sudden onset POTS can resolve over time - some report three to five years.

I have noticed there are those that have always had it, those that get it randomly and it stays, and those that get it randomly and wax and wane, and those that get it and it eventually goes away. that is the patterns ive noticed.

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