Preload Failure/Dysautonomia Symptoms

[Macho319]

Hello everyone,

This is my first post. For over three years I’ve been trying to get a diagnosis for my ongoing symptoms. To begin I’ve had every heart, lung, blood & neurological test there is. I recently had an Invasive Cardiopulmonary Exercise Test (iCPET) at UCLA. A Pulmonologist performed the test and based on his interpretation there was a cardiac issue, but the rest was relatively normal. Now when I met with the Cardiologist who also performs this test, his diagnosis was Preload Failure. He stated that my pressures did not increase appropriately during exercise and even reduced.

I’ve also met with 3 other Cardiologists at UCLA. Two have no idea what’s wrong and the other thinks I have some kind of dysautonomia. I wanted to find out from those who have a similar diagnosis, what you feel and what are your symptoms. Mine change from day to day but here is my list. 

Shortness of breath (mostly from standing or changing positions)/ Shortness of Breath After Eating/ Dizzy weak feeling after eating/ Shortness of breath when lying on my back but then it goes away/ Blood Sugar Drops after activity like a shower/ Hypotension when in right or left lateral positions/ Arms & legs burn with minimal use and are weak/ Climbing stairs makes me feel like I am going to suffocate or die/ Body pain & numbness/ Chills at night sometimes when my heart beat feels off/ and the list goes on & on

I do not have heart failure, pulmonary hypertension, or mitochondrial disease. The only other issue I have is NAFLD (fatty liver). I read about NAFLD causing low preload so now UCLA wants to do another heart cath and at the same time measure the pressures across my liver to see if that might be the cause for the low venous return. 

If you made it this far, thanks for reading. Any input, thoughts, suggestions, stories are welcome. I would appreciate it very much! Prayers and blessings to all of you. Our journey is not an easy one. 

[RecipeForDisaster]

That’s interesting. There’s a doctor in Boston who does iCPETs on dysautonomia, ME/CFS, etc. patients, and while I could not do the test due to risk factors, my friend did… she was diagnosed with preload failure and offered pyridostigmine. I’m already on it anyway. I do think it helps somewhat, but not enough. A lot of us here have symptoms similar to yours…. Unfortunately, I’m still not fully diagnosed. I have autoimmune small fiber neuropathy and HYCH, hypocarbic cerebral hypoperfusion, plus just chronically low blood pressure and perfusion all over. It is like I’m in shock all the time.

[MikeO]

I have been taking pyridostigmine and helps but my ranolazine has been the miracle. might be worth a look.  

[Macho319]

Here is the link I presented to UCLA about the NAFLD component for my current situation. There is an “Obstructive HFpEF Phenotype” that presents with low BNP (I have), high to normal cardiac output at rest (I have- 2 caths 1 high 1 normal) and impaired cardiac output augmentation with activity (I have- iCPET). They are only doing the additional cath for data purposes. Their management recommendations are the same. Up my Salt, 3L of water per day, compression socks, abdominal binder and exercise. 

 

https://www.sciencedirect.com/science/article/pii/S2452302X21002606

[RecipeForDisaster]

6 hours ago, Macho319 said:

Here is the link I presented to UCLA about the NAFLD component for my current situation. There is an “Obstructive HFpEF Phenotype” that presents with low BNP (I have), high to normal cardiac output at rest (I have- 2 caths 1 high 1 normal) and impaired cardiac output augmentation with activity (I have- iCPET). They are only doing the additional cath for data purposes. Their management recommendations are the same. Up my Salt, 3L of water per day, compression socks, abdominal binder and exercise. 

 

https://www.sciencedirect.com/science/article/pii/S2452302X21002606

Makes sense. That’s why I’m not too sad that I can’t do the iCPET. I’ve had those recommendations (4L water and 15gm salt) for over a decade. The guy here has no other ideas other than pyridostigmine.

[Sarah Tee]

@Macho319, you mentioned your blood glucose falling after activity, such as having a shower. Is this measured with a meter?

The reason I ask is that I spent a long time thinking I was having trouble with my blood glucose, but when I got a meter I found out that my levels were normal and I was actually feeling presyncope. (At least that’s what we think – it’s hard to measure presyncope!)

[Macho319]

Hello! Yes I am wearing a dexcom g6 monitor. It measures every 5 mins. After I take a 10-15 min shower I can see a drop of about 15-30 points. I can also feel it. Luckily I’ve been able to tell the difference between blood pressure and blood sugar. With sugar I feel weak, with blood pressure I feel dizzy. Strange I know 🙂

[Sarah Tee]

@Macho319, that’s good that you have got a high-tech monitor. I am not an expert on blood glucose, but I’m guessing a drop such as this is abnormal. Have any of your doctors had any thoughts on this?

Also, I forgot to ask, have you had any autonomic testing? Sounds like maybe this is your next stop, but perhaps one of the cardiologists did a tilt table test?

[Macho319]

My Endocrinologist says I have non-diabetic reactive hypoglycemia. Why? They have no idea. I don’t have any insulinomas which are tumors on the pancreas. 
 

Tilt Table- yes. I’ve had two of them. Both were negative. They think I may have a delayed manifestation of POTS, since I have slight pooling, low cardiac output with exercise and similar symptoms. The only thing I don’t have is the fast heart rate that most POTS patients have. When I get up my heart rate does spike 20-30 beats but it doesn’t stay there. It will come back down. I’m a medical mystery as they put it. Happy Friday!!

[Sarah Tee]

@Macho319, yes, reactive hypoglycemia is bit of a mystery, isn’t it. Another condition that almost no-one investigates sadly. At least you know what it is and have it on your records,

Did you know that you can have orthostatic intolerance type dysautonomia with a normal TTT? That’s my current diagnosis.

This article descibes one doctor who is looking a bit further:

https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/

It’s not necessarily that you should rush out and try to get a TTT with the transcranial Doppler addition, more just to know it exists. Although I have heard that Dr Novak has come up with some treatment ideas for OCHOS and HYCH.

Recently four other autonomic specialists got grants to buy the transcranial Doppler equipment:

• Tae Chung, Johns Hopkins – has an interest in exercise rehabilitation
  https://vimeo.com/483090164
   
• Melissa Cortez, University of Utah – has an interest in headache and migraine
  https://vimeo.com/359102751
   
• Nate Robbins, Dartmouth Hitchcock – neurologist
  https://www.dartmouth-hitchcock.org/findaprovider/provider/2145/Nathaniel-M-Robbins
   
• Satish Raj, University of Calgary – cardiologist with lots of POTS research under his belt, frequent speaker at DI conferences
  https://vimeo.com/589514511

Best of luck getting some help with it all. Sounds like you are making progress, even if it’s a long slog.

[Macho319]

Wow! Such great information. Thank you for sharing!! I think the preload failure for me is the more accurate diagnosis. After eating I become short of breath and anytime I stand or change positions I really struggle to breathe. And when I say breathe it’s like this internal gasping sensation without the act of gasping. It’s horrible. I can feel it for 20-30 mins after and then I get back to baseline. I am wearing thigh high compression socks and an abdominal binder but it still happens. 
 

Does anyone else experience anything like this when changing positions? I know potsies have a rapid heart rate and feel tired but do they feel short of breath internally almost like a drowning feeling? I think my situation is a tad bit different than most but we are all unique. 

[Sarah Tee]

 @Macho319, I don’t have this symptom, but a good percentage of people with POTS and other OI conditions do. It seems to get called dyspnea. I am sure a few people will chime in and describe how they experience it.

One option, if you haven’t explored it already, would be an assessment by a respiratory physiotherapist.

https://www.potsuk.org/managingpots/breathing-pattern-disorders-in-pots/

(There’s not much research done on non-POTS orthostatic intolerance so we usually have to look to POTS research.)

This article takes a different angle – gets a bit technical for me but it mentions low cardiac filling pressure.

[Pistol]

15 hours ago, Macho319 said:

Does anyone else experience anything like this when changing positions?

Yes, @Macho319, I get short of breath when I overdo things. Not even exercise, just overstimulated. I feel like I cannot take deep enough breath, but my oxygen levels are normal, so it is not REAL dyspnea. For me it improves with rest.