From Bedridden to riding my bike for 20 km-My Story

[goldberg]

Introduction

Hi I'm Mark, and I am a long time lurker on this forum, I had severe POTS for about 8 years during which I was bedridden 90% of the time.
I had very bad angina even when being in bed, confusion and all the symptoms that you know all too well.
I was diagnosed with ME/CFS at Stanford. I would read, from time to time, a story about people with POTS getting better with exercise but I always thought that wouldn't be the case for me.
The experts said that exercise wasn't right for ME/CFS, that it would be damaging in the long term.
And they were actually right because someone in my condition would have been severely damaged by exercise(but more on that later).

The POTS Diagnosis

It is bizarre to think of it, but I had my POTS diagnosis after about 7 years of being bedridden.
Or to be more clear, I had my first real treatment for POTS after being diagnosed with Lyme disease.

It turns out that the Stanford experts were aware of the POTS but wouldn't treat it, no midodrine nor beta-blockers(nor any other POTS drug, there are many). They never even mentioned that there were treatments for POTS, they would, however, treat me with very experimental protocols for viral infections.

First Steps in the right direction

When I had my diagnosis of Lyme disease, I went to an LLMD, a Lyme literate doctor. He mentioned for the first time that many of his patients had POTS and that there were treatments for it.

I began to take midodrine, this was a real turning point for me. I started at 2.5 mg which was barely having any effect on me. But at 10 mg x 3/day, I could really feel an enormous difference.
It was the first time that any treatment had any positive effect on me.

I also began to take metoprolol which also helped a lot my tachycardia.

However I was still very limited, my stamina was still very low.

The video that changed it all

Before being bedridden, in my teen years, I was an agonist cyclist. I did win a 2nd and a 3rd place in the nationals. So I was very keen to try an exercise program, I knew that I could withstand the pain.

When I was bedridden, I tried multiple times to begin a very gentle exercise program.
Every time I tried, I would be sick for days.
Sometimes I would be sick for 6-7 months because of a single day trying to start exercise.
I would have bad angina and would feel awful even in my bed (my cardiologist said my heart was perfect though).

But the midodrine and metoprolol changed this, it was a little step, but it gave me the confidence to try again.

At the time I found this video:

I begin to try, and it was hard. Very hard.

It would take an hour and a half to do half of the exercises.
I would wait from 10 to 15 minutes between every exercise to recover.
I would only do the easiest exercises and without weights.

The first month was painful, but I could see I was getting a little better.
The second month was better, but it still did take a lot of time to complete.
Instead of feeling worse after the exercise, after about a half an hour of recovery I would feel strangely better.
It was like oxygen was finally reaching the body and the heart, sometime I would begin feeling the angina and finishing with the angina gone.

I've always asked myself why I had the angina and it seemed that the ischemia hypothesis was the right one.
Finally, I knew why my heart was in pain! It was a great day when I realized it.

The exercise protocol

After 6 months of doing the video exercise protocol, I was better, but I had still a long way to go.

That's when I thought that I was ready for doing THE exercise protocol,

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwiF7dfLm8ndAhXLzoUKHYFFDNYQFjAAegQIBxAC&url=https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf&usg=AOvVaw2nB1DmdtlYVgZXY_-iFu0p

I read this protocol when I was bedridden, and I always thought that it wasn't possible for me, that only people who hadn't severe POTS could do it, that only people who hadn't ME/CFS could do it.

But I was wrong. And the Stanford experts were wrong.

I religiously followed the Dallas protocol, and it has helped immensely.
I have a lot more stamina, I am back at work.

Am I healthy and symptom-free? Nope.
But I am not living in an eternal hell anymore, and I am back riding my bike.

I hope that my story will give you hope and the courage to try that unreachable exercise protocol again.
(But first, get the right treatment).

I am not sure I will have time to hang out here on the forum, but if you want to contact me you can reach me at my email:
ethicalagency@pm.me

 

[Wolfcub]

Wow....this is positive news @goldberg and I am pleased for you that there is great improvement!
Maybe what you have discovered will also help others.
Kind thoughts.
(bikes always hurt my "bum-bones" haha! I just walk.)

 

[AdamS]

I am not sure I will have time to hang out here on the forum, but if you want to contact me you can reach me at my email:
ethicalagency@pm.me

This appears to be a great recovery story, many thanks for posting, i'm very happy that you've made such a great improvement. If you don't mind, I think it would benefit a lot more people if you answered questions directly on this thread if you have the time. I have a few below:

• Do you still take Midodrine/Metoprolol or did your improvement from exercise mean that you no longer need them?
• How many times per week did you do the workout video when you first started? I presume you needed rest days?
• How far can you walk now without experiencing PEM?

Thanks!

 

[Research 1st]

I've got POTS and ME so I'm going to say my 2 cents as it's ruined my life because I was wrongly accused of having deconditioning POTS (bedridden with ME) and held in a psych ward and forced to do CBT/GET (to 'cure POTS') and, of course, was abused by Psychiatrists. This is my reason for this post, to explain to other people POTS is not as clear as it seems, in terms of who has what.

Now I know the dangers of misdiagnosis, when people tell me in POTS groups they have POTS, are are cured or better or worse and housebound etc you need to ask how they were diagnosed or what tests they've had and by whom and where. Although patients are diagnosed in Hospital, some are self diagnosed which is absurd in terms of correct and safe clinical care. It should be added, many ME CFS patients are forced to self diagnose, because they are denied autonomic testing, including a TILT table test. This means dysautonomia patients who could have gotten some significant gains in their life, because they have ME CFS originally (like I did) are denied medications for POTS, making them into housebound or bedridden ME CFS patients, when they don't need to be this disabled.

Since I've been looking into this, it now makes sense to me , POTS isn't very well organised diagnostically. There are too many subsets of patients, all telling you they have POTS, but really they aren't alike at all. Some patients claim bizarre therapies cured them- just as with ME/CFS. I give these patients a wide birth, as it's not worth arguing with them, and ultimately they are victims of a medical system that failed to diagnose them correctly.

The sad reality is, just because someone's heart races standing upright to 120+ (or 30 difference) doesn't mean they have the same cause, and if you don't have the same cause keeping you sick, you won't get better like the person who does, using their method as you don't have the same reason you're ill. This is why you need to consider the following, both as a patient (who wants to get better but doesn't) and as a patient who recovered.

POTS patients need to be honest here: All we have over ME CFS patients diagnostically, is a tachycardia test result. That may be impressive (poor ME CFS has nothing), but it's not really 'all that', it's interesting, but on it's own, it's not proof we have a wide spread Dysautonomia at all. Because?

People can get massively better with POTS for many reasons, but like ME CFS there is no definitive test, we need a unique test for POTS like with ME CFS. There are tests for some POTS subsets, yet researchers are still arguing and the whole thing is a mess, some even argue POTS is psychological as subsets of patients recover with exercise. Hopefully within 5 years we'll have stronger evidence who has what. At the end of the day, the POTS diagnostic criteria are inadequate. Here is why being diagnosed with POTS doesn't mean you're going to be like the next patient at all:

This differing types of patents, who all refer to themselves as having 'POTS' - but are they really alike?

[POTS on TILT with wider Dysautonomia - Valsalva, VVS testing, Food challenge, Sweat test etc].
1) Group one: have established Dysautonomia on TILT and other forms of autonomic testing having gained access to a teaching Hospital, but refer to themselves as simply POTS patients (due to the tachycardia component). Really they are too complex to be 'just' POTS patients and likely have other multiple conditions. This is me, hence I wrote this. I've actually got many things wrong with me - bladder urine retention, VVS etc. Because there are probably 5 or more things to list, it's too complicated and I just say POTS, but really this isn't fully accurate. It would also explain why I don't recover.

[POTS not extensively tested].
2) Group two: Still has POTS on TILT, but may still have wider Dysautonomia such as above. Yet as they aren't tested for, they are all missed cases. So these are 'potential wider Dysautonimia patients' all referring to themselves as POTS. A bit sad really. A point here will annoy some people but i'll say it as it's true. Group two can also include mentally ill patients who are bedridden before the TILT test, we'll call these Group 3.

[Deconditioning POTS - mostly the mentally ill]
3) Also fail their TILT test, but due to deconditioning and prior bed rest. Yes they 'tested positive' but they never repeat the TILT test, because if they do this they fear they are exposed as 'fakes', due to the stigma of mental illness, they won't admit to why they are in bed, and they use stories such as having ME/CFS, when actually they're depressed for some personal reason. There are plenty of people, even some in the media who have recovered from POTS, yet if you read their story, they had depression/eating disorder/horrendous diet etc and this is why they became bedridden usually following a virus etc. So they didn't have organic POTS, they had decondtioning functional POTS, for some weird reason, they can't just come out and say it and instead try and push weird theories on what causes POTS which are usually unscientific. Of course, ME/CFS patients are at risk of being accused of this subset, if they arrive into Hospital bedridden, because the doctors will suspect you only have POTS, due to being bedridden even if you tell them you had it when you could exercise, or walk around the home fine. These patients respond well to exercise. I would agree my POTS is 'maintained' by activity, but naturally I can't exercise my way out of Dysautonomia, even if I didn't have ME/CFS. No one with Dysautonomia can, only Functional Dysautonomia states, like deconditioning POTS can you do this.

[POTS not using Gold standard testing - unclear if they have POTS long term or not]
4) No access to a TILT test, but are told they have POTS using a 'poor man's TILT test', which is going to give a false positive (If not repeated multiple times) and also conversely miss patients who need the extra circulatory stress on the body, a TILT test causes, who have it less severely.

[Autoimmune POTS driven by infection].
5) Autoimmune variants such as above, can vanish or wax and wayn cyclically over years. E.g. recently my POTS has gotten better, (it always does due to age apparently as your sympathetic nervous system becomes less 'aroused'), but then once I catch a virus again, I'll relapse and we'll be back to square one. Maybe that won't happen and I'll end up with 'just' severe ME, who knows.

In conclusion:
The diagnostic criteria for POTS needs to be replaced by different tests for different subsets. For example, currently my pulse is only 90-120 standing on no meds. It used to be 135 and at worse 180. But if I have a shower, my pulse goes to 200bpm (due to blood pooling). So due to age, if I had a TILT test, I'd probably not fail it, or if I did, only just. Yet my Dysautonomia is just as bad as it was, other than much less upright tachycardia. I'd now risk being called a mental patient if I was in Hospital, they'd simply not believe I had O.I if my tachycardia isn't fast enough to meet POTS criteria. So there needs to be a blood test.

Imagine being told you don't have Asthma, because during your Hospital admission, you have no attacks and your lung capacity is normal, your X-ray shows no air trapping, and you aren't allergic to any food. So there needs to be a way to measure what POTS patients bodies do, when in a better phase of health, and specifically with ageing, as it gets better with age.

All of this matters when patients are diagnosed with POTS, recover, stagnate, gently improve, or get slowly worse. As POTS patients, just like ME/CFS we cannot possibly all be having the same reasons to be sick and a tachycardia on upright posture test, is certainly not enough. It also affects research outcomes as research is simply titled: POTS - insert finding here..... due to subsets, just like ME CFS, big inconsistencies are found which delays funding for lager studies.

 

[goldberg]

• Do you still take Midodrine/Metoprolol or did your improvement from exercise mean that you no longer need them?

I still need them. I am pretty sure that without drugs and without a regular workout plan I would be back in the bed in about a month.
A recent study proved that those who workout regularly have about 1L or more of blood, this advantage goes away in 15 days. I think this helps too with the hypovolemia.

• How many times per week did you do the workout video when you first started? I presume you needed rest days?

I did it every other day for the first 6 months, but the first 3 months I went really easy and gradual.
You have to be patient and the most important thing is the horizontal position, of course.
I want to stress that I would not be able to start to exercise without the POTS drugs(in my case midodrine, metoprolol. But there are many)

That channel has a whole lot of information on other videos too.

• How far can you walk now without experiencing PEM?

After about 10 minutes of vigorous exercise I feel like a normal person, that's the time it takes for the pression to go up for me. I would say like a normal person.

PEM only happens if I stand still for too much, I still have POTS and my autonomic nervous system will not respond to the standing position. But my heart compensates well if I don't overdo it.

If you see the youtube channel that I posted you will see that the girl does exercise to recover from being still for too much. That's when I have problems too, this is common in POTS but you will not see this pattern when you are not exercising ( I couldn't experience it because I was too sick all the time).

I hesitated to tell my story because I knew I would be accused of being mentally ill, thanks Research1st.
I was thinking the same when I was very ill.
But I am not at all normal, my POTS is still there. My quality of life is incresead though.
Exercise works for a percentage of POTS patients and there are multiple studies about it.

Again this is only my personal experience, I am pretty sure there is percentage of people here on the forum which belongs to the same POTS subset I belong to.

 

[AdamS]

Thanks for the reply @goldberg and for the info! Midodrine definitely helped my endurance in the past but I came off it in the end. Maybe I expected too much too soon. I haven’t exercised properly in a few years because it causes me to crash and socialising is usually enough exercise for me nowadays! I have been pondering the best way to get some improvement out of light exercise recently and the video you posted is certainly interesting because it is all done while laying down.

 

[Eve18]

When I had my diagnosis of Lyme disease, I went to an LLMD, a Lyme literate doctor. He mentioned for the first time that many of his patients had POTS and that there were treatments for it.

Did you undergo treatment for Lyme and do you think it could also be a factor in your recovery story?

Did you experience flu like symptoms (sore throat, body aches, etc) during PEM?

We all have the same diagnosis but without a diagnostic test we don’t know if we have the same disease. I started treatment for POTS last year with high hopes. Unfortunately even if my hr is not so fast I progressively get worse. I also experience really bad PEM after very gentle floor exercise for POTS, few rep, only while laying down. I wonder if I’m doing something wrong or we have different subset of this disease.

Congratulations on your recovery! Don’t overdo it though...

 

[Rebeccare]

At the time I found this video:
I begin to try, and it was hard. Very hard.

It would take an hour and a half to do half of the exercises.
I would wait from 10 to 15 minutes between every exercise to recover.
I would only do the easiest exercises and without weights.

The first month was painful, but I could see I was getting a little better.
The second month was better, but it still did take a lot of time to complete.

How was your PEM with these exercises? This sounds very tantalizing, but I'm worried about overdoing it and making things worse for myself.

 

[Jackdaw]

I am presuming this is only encouraging exercise for those with POTS who don’t have ME. As the massive risks of pushing and the studies showing the broken mechanisms in the body for ME are clear. Don’t go beyond your limits, you won’t feel better for it. I do believe gradual increases are possible but sometimes not. There is a driving force behind ME and you can only do so much.

 

[Learner1]

I am presuming this is only encouraging exercise for those with POTS who don’t have ME. As the massive risks of pushing and the studies showing the broken mechanisms in the body for ME are clear. Don’t go beyond your limits, you won’t feel better for it. I do believe gradual increases are possible but sometimes not. There is a driving force behind ME and you can only do so much.

I have ME/CFS and POTS and gave been able to gradually increase my exercise. Exercise is good for me but has not cured me.

Much of my improvements are related to immune system and infection treatments, and above all, replenishing nutrient deficiencies and keeping my levels sufficient. In particular, amino acids, phospholipids, B vitamins, NAD+, antioxidants (especially glutathione), have been critical to supporting my improvements.
My POTS has benefited from IVIG, Mestinon and propranolol. And hormone support - hydrocortisone, thyroid, DHEA, and testosterone have helped, too.

But exercising without these supports would have made me regress and driven continual PEM. Using these tools helps me to avoid PEM most of the time.

 

[RuralRick]

That is a really great post, @goldberg. Especially that you included the exercises. I found it very helpful.

Thanks for sharing your journey with us.

 

[panckage]

Glad to hear about your recovery @goldberg. I have a somewhat similar story with regards to exercise. If I jog for 15min I get PEM for 3 days or so. Interestingly I believe my condition is usually too poor to usually reach this level of exercise. Lesser forms of exertion (such as 30min on an exercise bike with low resistance) does not seem to induce PEM.

Now due to mis-prescibed orthotics (25 years!) , various injuries, reduced mobility from me/cfs and generally horrible and hurtful medical experiences I deal with deconditoining and a whole bag of other complications such that simple exercise I could handle with me/cfs became something I could not handle.

For me deconditioning = POTS. When I am reconditioned my POTS doesn't go away 100% but i also don't get dizzy everytime I bend over. It's a massive night and day difference when my body is reconditioned.

When I am/was in the horrible deconditoined I'm not sure I could tell the me/cfs symptoms apart from the others. I just felt awful all the time including autism level brain fog. I could not even connect ideas. I existed only on reflex

It takes more than a year to recondition myself (for both times this has happened!). These complications are way worse than me/cfs by itself in my case


Anyway what I am trying to say is that exercise is very helpful if we can do it without triggering PEM. In my case the complications of deconditioning and the accompanying autism like symptoms made it impossible for me to tell the symptoms apart from PEM. I became unable to judge my own condition

I wonder if you experienced something similar where POTS symptoms may have been confused with PEM