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Bluebonnet08

New Research out of Harvard (shortness of breath)

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This is a new research study out of Harvard.  They have collaborated with The Open Medicine Foundation (currently working to cure ME/CFS).  This study looks at shortness of breath in people with POTS.  As you scroll through, click to "read more" and it will take you to the full synopsis.  Thought it was pretty fascinating.  Could potentially explain and (cure/treat) the problem of shortness of breath in POTS.  It is personally something I have struggled with so I would love to have an explanation!

http://endmecfs.mgh.harvard.edu/heartpreload/

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Wow, thank you for sharing.  Really interesting.  Many of us experience exercise intolerance--even after many other severe symptoms improve.  This is important research!

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Dr. Systrom (principal investigator on this study) has prescribed Mestinon to about 300 patients with good results in dealing with symptoms. I am currently trying it but it is taking time to titrate the dose up to therapeutic levels as Mestinon has gastro side-effects for many. So far though I do feel that my crashes from exceeding my energy envelope are milder. Is anyone else trying this?

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Very interesting article - thanks for posting!!

@Sushi Keep us updated on the Mestinon. One of my doctors suggested I try this medication at one point, but I have such bad GI symptoms already that I declined at the time. 

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5 hours ago, jklass44 said:

Very interesting article - thanks for posting!!

@Sushi Keep us updated on the Mestinon. One of my doctors suggested I try this medication at one point, but I have such bad GI symptoms already that I declined at the time. 

I did have gastro issues with it but found that starting with micro dosing and then using micro titration minimized it and now I am not getting gastro issues though it takes a lot of discipline not to move the dose up too fast. The question remaining is what the effect will be when I finally get up to a therapeutic dose.

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On 9/11/2019 at 4:54 AM, RecipeForDisaster said:

I'm excited that I have an appt with Dr. Systrom in April. I've been on Mestinon 60mg TID for years without side effects, and with minor to moderate beneficial benefits.

That is great—please keep us posted! Wow, what a long wait! He will probably want you to do invasive exercise testing. Just a note: this involves at least one arterial catheter and I’ve recently, on two occasions, had to have a catheter in my radial artery (wrist) and both times pain developed about a week later. All I can guess is that, with EDS, my blood vessels are more fragile and reacted to having a catheter inserted. My doctor didn’t have an answer though. 

I am up to about 22 mg twice a day but get side-effects every time I raise the dose.

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1 hour ago, Sushi said:

Just a note: this involves at least one arterial catheter and I’ve recently, on two occasions, had to have a catheter in my radial artery (wrist) and both times pain developed about a week later.

@Sushi - I had a heart cath in 2018 where they used the right radial artery for the catheter. I developed pain in my right wrist and armpit, they did an arterial ultrasound and found that my radial artery was clotted from the pressure applied after the procedure. I had to take Plavix for a while but had side effects, so I stopped. Today the radial artery si still clotted but better and the arteries developed an alternate circulation, so I have no ill effects from the clot.  

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On 9/12/2019 at 12:08 PM, Pistol said:

@Sushi - I had a heart cath in 2018 where they used the right radial artery for the catheter. I developed pain in my right wrist and armpit, they did an arterial ultrasound and found that my radial artery was clotted from the pressure applied after the procedure. I had to take Plavix for a while but had side effects, so I stopped. Today the radial artery si still clotted but better and the arteries developed an alternate circulation, so I have no ill effects from the clot.  

That is an awful story and a caution for those considering Systrom’s testing. He uses interventional cardiologists to place the catheters but it is still an invasive procedure, no matter how skilled the doctor. I don’t think that this was my issue though as I had been given a lot of IV heparin and its levels were checked every half hour. I also restarted my regular Eliquis the next day plus daily aspirin for three months until tissue grows over the MitraClip that was placed during the procedure. The Eliquis is because I have Afib. I suspect that my pain was from irritation as I have hEDS and my blood vessels are fragile.

How did they apply pressure on your radial artery? I had an inflatable bracelet and they reduced the pressure in it slowly for about a half an hour. I never had pain at the insertion site though.

As far as the Mestinon, I seem to be okay with my 22 mg dose now, but will have to increase the dose soon. It does seem to reduce PEM though.

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