POTS better, energy better, PEM is raining on the parade

[Mary]

@Mary Can I send you a PM some time to learn more about BCAA's and glutamine from your experience? I will read your links first so I know what I am talking about and focus my questions!

Sure, no problem.

 

[Never Give Up]

Thanks for all of the great advice! I've had my hands full and haven't been able to respond until now.

We generally knew he had dysautonomia. A few visits ago Dr. Chia thought that he was making good progress with the antiviral treatment and that it was time to go after the dysautonomias.

Enter Midodrine. It was like a miracle for the first 3 days, then it turned into a roller coaster ride from hell. He went off of it, but it left him tachycardic and feeling unwell. A poor man's tilt table showed his heart rate increased by nearly 100BPM at 10 minutes of standing, and pulse pressures were all over the map, going up as high as 59, and down as low as 30.

He tried Lopressor next, it had him waking up in the middle of the night with tachycardia and feeling worse than he'd ever felt in his life- and that's saying a lot.

Off of all POTS Meds his heart revved between 130 and 155BPM, when his normal resting heart rate was in the high 50's. So, he saw a cardiologist. She put him on Florinef. I won't bother you with her ignorance of ME/CFS now, but we had a doozy of a visit.

The Florinef has greatly improved his dysautonomia. He is less sensitive to light, has energy, and best of all is able to do some school work again after 2 years of not being able to do any at all. He says he is more clear headed than he's been during the last 3 1/2 when he got sick! This on the heels of the antivirals enabling him to read again. The increasing heart rate with being upright isn't gone yet, but it's much better. He will be increasing the dose soon.

So, yesterday we went to the follow up appointment with Dr. Chia. He is convinced my son will be able to "walk back into his life." He did not start out saying things like this, but began to after seeing his response to the antivirals. He will likely add another antiviral to the mix at his next visit.

We took your advice, he kept his feet up, reclined a bit, used his wheel chair, and after the visit we went to a movie to wait out the traffic. It is impressive that he was able to go to the movie at all, let alone stay through the whole thing. He kept his feet up throughout. We chatted the whole way home, that's a big deal, too. Normally he wouldn't be able to tolerate the energy expenditure of talking, let alone listen to me talk. It was not the nightmare we expected at all.

Today he has PEM, but not nearly as bad as from the car ride the other day. Absolutely no idea why...

 

[SOC]

We took your advice, he kept his feet up, reclined a bit, used his wheel chair, and after the visit we went to a movie to wait out the traffic. It is impressive that he was able to go to the movie at all, let alone stay through the whole thing. He kept his feet up throughout. We chatted the whole way home, that's a big deal, too. Normally he wouldn't be able to tolerate the energy expenditure of talking, let alone listen to me talk. It was not the nightmare we expected at all.

Today he has PEM, but not nearly as bad as from the car ride the other day. Absolutely no idea why...

So it does sound like the POTS is a major issue with regard to his current symptoms. That might be good because you can keep working on better POTS treatment/management and maybe get him some more QOL.

Great news that he's responding to AVs, too. It looks like he's making excellent progress, although slow (which is always the case with this illness).

Some PEM doesn't seem surprising given how long he was out and how much he managed to do -- Dr appt, 2 hr car ride, movie, chatting. That would have PEMed me, too, when I was more ill. All things considered, it sounds like you managed the trip quite well. Congrats!

I'm currently tutoring two teenage boys with ME/CFS who are in about the same place as your son. My daughter developed ME/CFS at 12yo. It's a continuous challenge to find ways to continue their education in the face of the limitations imposed by this dreadful disease, but we're finding ways. I hope you are too. It's heartbreaking watching kids try to cope. I'm always thrilled to hear stories of improvements in our young ones -- well, anyone really.

 

[nsdn]

@Never Give Up

The prospect of florinef explains that immunosuppresses. Is it wise to take it?
Thank you.

 

[nsdn]

@SOC

 

[Jessie 107]

I too have been taking branch chain amnio accids, but I am now taking the powder form.
It has helped reduce PEM from three to half that. For the first time I haven't had any PEM for two weeks! And I haven't changed what I have been been doing during the day.
But I have had days where I feel like I have a virus /flu like symptoms instead of PEM.
Still ill feeling but not as dreadful as PEM.
I just cannot find my limits though, I hardly do anything much. Seems like I am ok if I stay in bed and don't move much!!

 

[hamsterman]

I too have been taking branch chain amnio accids, but I am now taking the powder form.
It has helped reduce PEM from three to half that. For the first time I haven't had any PEM for two weeks! And I haven't changed what I have been been doing during the day.
But I have had days where I feel like I have a virus /flu like symptoms instead of PEM.
Still ill feeling but not as dreadful as PEM.
I just cannot find my limits though, I hardly do anything much. Seems like I am ok if I stay in bed and don't move much!!

I think its possible that those days where you have flu-like symptoms, you may be experiencing PEM, but the BCAA have made it more manageable. I also take BCAA, for lots of different reasons, and I have noticed slight improvements with the duration and severity of PEM. I can't say 100%... but I think it does help.