I will be making a new site/blog and will update this page when I have the address.
Keep fighting that fight.
Don’t let anyone tell you there isn’t a cure for POTS. THERE IS. It’s just a complicated situation- but thankfully a situation that improves every day- as we uncover the mysteries of this strange autoimmune illness.
Looking back at my old posts i see that i was very hopeful and full of determination. Nothing was going to detour me from my ‘reconditioning’ wish i still could believe this disease was curable.
Edit, it still is curable..just not with exercise, but rather with ivig. But if u are reading this and have pots, trust me, exercise regardless.
Yep still feeling great. The bad times appear to be behind me.
I want to write 5 things in this post that have been on my mind and would like to share.
1. I did not have secondary Pots. But I strongly believe that secondary pots is curable through exercise. Why do I believe this? A study in progress with a larger group of patients shows POTS is cured in most patients by exercise. As far as I can see, there are guaranteed to be many people in this current study who have ‘secondary pots’ and were still cured pots as far as the definition.
Of those reporting 3 month data, 41 out of 56 patients no longer met POTS criteria after completing the training program, a 73% “cure” rate.
By reading the full study, you can see that there was no screening of secondary or primary pots for patients in this study.
2. I am not a medical professional. I didn’t even graduate college. These are my stories and sometimes opinions, take them however you want. I’m not telling you what to do, just my views.
3. I feel the need to redefine what ‘exercise’ meant to me, when I claim that my pots was cured by exercise. I went all out. I would wake up and exercise to what I felt was my absolute maximum capacity, that is, whatever the most I could do without injuring myself or harming myself. I will probably reiterate on the specifics later, but mostly I would do cardio exercises that involved some kind of twist. My favorite one was to run while shadow boxing. At first I could not do this for very long, but results were better over time. Running with a slight incline was extremely helpful in my opinion, as it tired me out the fastest. I was very, very, very thirsty when I first started exercising. If you consider yourself someone who ‘tried’ to get rid of your POTS with exercise and failed, I would say give it another go, this time harder.
4. Forums are a dark place. I’m just going to leave it at that. And misery loves company.
5. There are people out there who are not going to be as easily cured from their POTS. This was the foundation for an email I received from someone. There are people with many other causes of their POTS besides deconditioning. Yep. Completely true. You know what’s a much worse situation? People who have a curable POTS, whether from deconditioning or as a secondary mechanism…. and rather than exercise, and they are told they will not get better easily… Or they are told to get tons of pills. Pills that tell the heart the following message “Hey, don’t even worry, you don’t need to gain any left ventricular mass which has been shown to improve symptoms. I’m going to make things easier for you a bunch of other ways, besides increasing cardiac size.” And then they go deeper down the hole they are already in. In my humble uneducated opinion, there are probably people out there who just need to exercise their ass off for a few months, rather than take beta blockers, SSRI’s, fluid retention drugs, etc etc. and may have better results. AGAIN just my opinion. I am not a doctor. I did not even graduate college. Hell I’m probably just plain wrong. Do what you like, ok?
That’s all for now. I think later I will talk about some other creative exercises that I believe helped me get away from POTS.
Here’s the basic summary.
I’m 29, male. I got sick. I was in bed for a couple weeks. I got pots syndrome. Was very uncomfortable. I read a bunch of info on it. I started doing exercises to my absolute maximum capability. I am now cured. The symptoms gradually went away, it was not an overnight thing. I did not ‘wake up’ Pots free. I worked towards it.
It has been a month or two since I first had it and I am now technically pots free, able to do anything, but I will have some very minor indicators every once in a while that my cardiac mass is not what it used to be beforehand, which will be corrected through exercise. For example the worst thing I have do deal with now is a higher heart rate right when I get up in the morning which subsides quickly. My normal standing heartrate is now 60-70. It was much higher any time I got up a month or two ago, with spikes much much higher. The brain fog went away about 2 weeks after intense exercise. It was not completely easy, but it was easier for me to suffer while exercising than to lay down and accept pots. Dont ‘accept’ pots. Exercise.
I put 50000% stock into the concept that POTS ITS FROM DECONDITIONING. I have been working on increasing my cardiovascular strength and the symptoms improved/went away already.
There is a wealth of terrifying discouraging information on pots, including user posts on popular forums, and even the main wikipedia page for POTS suggest by definition that POTS will last a minimum of 2 years. This is the most incorrect piece of information I’ve ever seen. My position is backed up by scientific studies. If you are a POTS sufferer then you already know what these studies are. I am referencing the Levine protocol and exercise.
If you have pots. You have a job to do. Exercise until you regain your freedom. Get off of the internet.
One final thing. You better believe that the people who were cured from POTS are not taking the time to come back and write about it. They are living their lives.