2-day CPET test results (reveals Chronotropic incompetence)

Dechi

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I received my test results. It's been almost 2 weeks now and I am still not recovered. Not bedbound but can't do much at all. I am dizzy pretty much all day, and weak and get exhausted faster.

Here is the conclusion of the report which I haven't had the chance to discuss with my doctor yet. The test reveals that I have Chronotropic incompetence, which I wasn't aware of. It explains some of my problems.

I certainly hope this will help me with getting disability. What do you think ? Anyone else has Chronotropic incompetence and is there any medication that can help ?

http://zupimages.net/viewer.php?id=17/32/h90c.png

http://zupimages.net/viewer.php?id=17/32/irzw.jpg
 
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Silencio

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I used the cpet and cognitive testing to get on both SSDI and LTD. which are you trying to get? I'm sure it will help a lot.

I did not have chronotropic incompetence and don't know anything about it.. I hope it leads to some treatment for you. Probably a cardiologist/ electrophysiologist should be your next stop.
 

Dechi

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I used the cpet and cognitive testing to get on both SSDI and LTD. which are you trying to get? I'm sure it will help a lot.

I did not have chronotropic incompetence and don't know anything about it.. I hope it leads to some treatment for you. Probably a cardiologist/ electrophysiologist should be your next stop.
I don't know what SSDI is but I am trying to get long term disability from a private insurance.

Yes, I think my doctor will want me to have more cardiac testing. Thank you.
 

Silencio

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SSDI is Social Security Disability Insurance. If you are in the US, your ltd insurer is likely to want you to apply for that also as it often offsets an ERISA plan. It's also good to apply for it in case you don't win your private insurance, or if you win now but are cut off again later.

If you are at the beginning of applying for ltd, be aware that it can be an ongoing fight.. I have appealed 3 times in 4 years. I used the cpet for appeal #2. For #3 I had my doctor write a letter saying that I was not fit to ever do one again. I never recovered back to previous baseline after doing the cpet unfortunately. But I think, most people do recover more, and I hope you do better than I.
 

Dechi

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SSDI is Social Security Disability Insurance. If you are in the US, your ltd insurer is likely to want you to apply for that also as it often offsets an ERISA plan. It's also good to apply for it in case you don't win your private insurance, or if you win now but are cut off again later.

If you are at the beginning of applying for ltd, be aware that it can be an ongoing fight.. I have appealed 3 times in 4 years. I used the cpet for appeal #2. For #3 I had my doctor write a letter saying that I was not fit to ever do one again. I never recovered back to previous baseline after doing the cpet unfortunately. But I think, most people do recover more, and I hope you do better than I.
Thank you ! I am from Canada and we have something similar to SSDI which I also applied for. It hasn't been long enough so I haven't had a response yet but I expect my claim to be rejected since it's very, very hard to get.

I hope I recover from this test. And I hope it serves a purpose and I haven't done it for nothing. Right now I feel pretty beat. :-(
 

Dechi

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Never head of chronotropic intolerance, found this article. Interesting. My results from the 2 day test are now about 7 years old. Wonder if I did the testing again, if they would find it now?

GG

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065291/
I don't know. Do you have this chart where you see your heart rate on day 1 and day 2 in your report ? I've seen your results but I don't remember. On day 1, my heart rate increased normally. On day 2, it didn't increase enough and sometimes it decreased. Check your day 2.
 

Mary

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@Dechi - I "liked" your post above, although I don't like that your results were bad. But I hope the test helps you with your disability claim. Your results state unequivocally that you have a low ventilatory/anaerobic threshold (VAT) which classifies you as severely impaired.

The article @*GG* linked was very interesting and actually not too hard to read (I read the first several sections). I would not be at all surprised if many or most people with MEC/FS had chronotropic incompetence, "the inability of the heart to increase its rate commensurate with increased activity or demand", which produces exercise intolerance.

I'm sorry you are paying a high price for just doing the test, and hope you recover soon! :thumbsup:
 

Dechi

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@Mary thank you for your kind words ! I found an article that talked about chronotropic incompetence in pwME and it seems to be quite common. I wish I remembered where... I'll post it if I find it again.
 

Kati

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Hi @Dechi i wonder where you got tested?

Good luck for your LTD. With such a professionally written report it should be a no brainer they declare you disabled for any occupation. Of course the insurance company will want you to do CBT and a comprehensive rehab program :confused:. I hope your doctor sees clearly that these would not be appropriate considering the evidence provided.

Take it easy,personally it takes me months to recover from this kind of testing. I would also suggest you be careful in accepting to do any further exercise testing any time soon (in investigating chronotropic incompetence or further 2days CPET) . It is my experience that these types of insults to your body add up.
 

*GG*

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I don't know. Do you have this chart where you see your heart rate on day 1 and day 2 in your report ? I've seen your results but I don't remember. On day 1, my heart rate increased normally. On day 2, it didn't increase enough and sometimes it decreased. Check your day 2.
Day 1 I think, not sure about Day 2.

GG
 

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Dechi

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Hi @Dechi i wonder where you got tested?

Good luck for your LTD. With such a professionally written report it should be a no brainer they declare you disabled for any occupation. Of course the insurance company will want you to do CBT and a comprehensive rehab program :confused:. I hope your doctor sees clearly that these would not be appropriate considering the evidence provided.

Take it easy,personally it takes me months to recover from this kind of testing. I would also suggest you be careful in accepting to do any further exercise testing any time soon (in investigating chronotropic incompetence or further 2days CPET) . It is my experience that these types of insults to your body add up.
@Kati Thank you !

I had my test done in Ithaca, by Betsy Keller. Very nice and professional lady.

I am already doing CBT to manage my anxiety, I beat them to it ! ;-). My therapist understands ME, I taught her, and she's not trying to cure it but she's helping me accept it. As for rehab, I have written proof that it did not work when I tried it last year. I guess I'll try it again if they want me too. I am now very good at not overdoing it when exercising, so even if they try, I don't think they could get me worse. I just won't do it.

I hadn't thought of that, about further testing, thank you for your advice : I'll make sure we wait until I've been back to baseline for a while before we do more physically challenging testing.
 

Gamboa

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Hi all,

I did the 2 day CPET at Ithaca with Dr Keller and, like you Dechi, have Chronotropic Incompetence.
Two years later I did another 2 day CPET in Ottawa at the Ottawa Heart Institute where, once again, I had CI.
I was then referred to a cardiologist due to other abnormalities and was told by him that CI means nothing. He knew nothing about ME/CFS and the cardiac issues that we have and I don't think he really knew what to make of the CI.

I also saw, around the same time, a cardiologist who specializes in Syncope/dysautonomia at the Hamilton General Hospital. There I had a tilt table test followed by further intensive testing that involved injecting various cardiac-affecting drugs while being hooked up to all sorts of monitors. Once again I had CI, along with orthostatic hypotension and faulty B-adrenergic response. This doctor also said the CI means nothing.

Having said all this, I believe the CI does mean something. I think these cardiac docs, who don't know much, if anything about ME/CFS, just don't know that many of us have this and that is most likely is indicative of something abnormal.
 

Dechi

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@Gamboa Wow, what I've read about chronotropic incompetence didn't sound like nothing at all ! :-(

It is so hard to have this illness recognized as serious... I too had the table tilt test but it was on a good da and I came out as having light neurally mediated syncope. On bad days, I almost faint when standing up too long.
 

ScottTriGuy

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a cardiologist who specializes in Syncope/dysautonomia at the Hamilton General Hospital. There I had a tilt table test followed by further intensive testing that involved injecting various cardiac-affecting drugs while being hooked up to all sorts of monitors. Once again I had CI, along with orthostatic hypotension and faulty B-adrenergic response. This doctor also said the CI means nothing.
Well that's disappointing to hear you're Hamilton specialist wasn't helpful (and perhaps obfuscatory) - I am assuming this was at their POTS clinic...I've been waiting 8 months just to hear from them when my appointment (in many more months) will be - I was hoping to get Dr Guzman but it doesn't sound like they understand their work in the ME context.
 

Dechi

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Well, as a matter of fact I think I am slowly, very slowly but surely going on a downward slope. I hope it’s only temporary but I definitely feel worse than before.

It’s actually a bit scary.

Amd how are you @*GG* ?