Strange CNN article on Dysautonomia Patient

[bombsh3ll]

16 hours ago, Derek1987 said:

I'm scheduled to see a specialist who deals with the adrenal glands. Will they figure this out? 

They will certainly figure out if you have an adrenal problem. If your adrenals are fine but autonomic nervous system malfunctioning, unfortunately they will not be able to help but at least they can rule out adrenal problems. 

Have you had a blood or urine test for catecholamines (noradrenaline, adrenaline)? This is pretty standard in anyone with POTS or similar symptoms these days to exclude adrenal tumours/overactivity. 

B xxx

[yogini]

8 hours ago, RichGotsPots said:

I still don’t understand why you think he didn’t invent the surgery? Just because you don’t believe him? Do you believe he had the surgery? Do you believe he has Bilateral Adrenal Medullary Hyperplasia? There are articles about his story that go back to 2010 where he is still homebound and he is trying to convince surgeons to do a surgery for it. 

Um, the only person saying that he invented the surgery is him. You’d think they’d have at least quoted his doctor if it were true, and that it would be written up in all kinds of medical articles . Don’t think I questioned his illness or recovery in any of my posts above, so not sure why you’d ask that. 🙄

[bombsh3ll]

I've "invented" an operation that I think would help me - just need to find a surgeon 

Like this guy, my operation has been done on experimental animals, but never to my knowledge on a human.

It is bilateral partial renal artery occlusion, with an adjustable/removable clamping device that would wrap around the artery. It would be like a little gastric sleeve for those greedy renal arteries on their perpetual urodilatin and natriuretic peptide induced blood flow binge. 

Reducing the volume of blood to the kidneys stimulates renin, of which I produce almost none. Renin via a complex pathway stimulates aldosterone, & we know the rest. 

It is the same principle as vigorous upright exercise or prolonged upright posture, which you wouldn't need the procedure if you could do, or the principle of sleeping with your bed on a slant which is a nice theory but the only study documenting benefit from the latter combined it with fludrocortisone.

I would totally be a guinea pig for this provided the clamps were reversible in the event it didn't turn out so well.

Occlusion to approximately 80% of the renal artery diameter might be a reasonable starting point.

You heard about it here first

B xxx

[Derek1987]

6 hours ago, bombsh3ll said:

They will certainly figure out if you have an adrenal problem. If your adrenals are fine but autonomic nervous system malfunctioning, unfortunately they will not be able to help but at least they can rule out adrenal problems. 

Have you had a blood or urine test for catecholamines (noradrenaline, adrenaline)? This is pretty standard in anyone with POTS or similar symptoms these days to exclude adrenal tumours/overactivity. 

B xxx

I did two 24 hour urine tests. They said they couldn't get a result. They actually drug tested me because they thought I could be diluting the urine test with water. So I got nothing from that. But I did do blood work during a TTT. She said my adrenaline was elevated when I was standing but they screwed up the test results somehow. She was like we didn't collect the result properly. So I don't even know what that means but I do have higher adrenaline when standing. 

 

So it sounds like me seeing this specialist for the adrenal glands is probably a waste of time most likely. I'll still go but these medical bills keep growing. 🤦‍♂️

[bombsh3ll]

1 hour ago, Derek1987 said:

I did two 24 hour urine tests. They said they couldn't get a result. They actually drug tested me because they thought I could be diluting the urine test with water. So I got nothing from that. But I did do blood work during a TTT. She said my adrenaline was elevated when I was standing but they screwed up the test results somehow. She was like we didn't collect the result properly. So I don't even know what that means but I do have higher adrenaline when standing. 

That's rotten you couldn't get proper test results, I hate when that happens!

I think it is still probably a good thing to see the adrenal specialist, because as remote as each individual possibility that you cross off is, like the guy in the article, it is important to keep looking for a treatable cause until EVERY single possibility is ruled out. That is my approach anyway.

B xxx

[Pistol]

@Derek1987 - you stated in another article that you have been referred to Vanderbilt. They will be able to do the testing properly and will also be able to give you diagnosis and treatment suggestions. They also will be able to explain everything that is going on so you will understand it. Personally - if for financial reasons I had to choose between the adrenal guy and Vanderbilt I would pick Vanderbilt b/c they can determine if you have adrenal issues. 

[RichGotsPots]

On ‎7‎/‎29‎/‎2019 at 11:38 AM, bombsh3ll said:

....or the principle of sleeping with your bed on a slant which is a nice theory but the only study documenting benefit from the latter combined it with fludrocortisone...

 

Unfortunately and pet peeve of mine, are these “principles” taken as matter-of-facts in Dysautonomia without any studies to prove them.  Just tilt your bed upright, I mean come on, I don’t know anyone who that ever helped and if it did then we do not know if it is placebo of it did anything to Renin Aldosterone ratios, as far as I am aware. And what % of  Dysautonomias people have have abnormal levels. Mine have always been normal over the years. If normal we do not know if it is at all advisable to do that. But still like gospel that is repeated to ever patient. Smh

 

As far as inventing the surgery you need, you could contact Doug since he has been through it. He says he helps me like him and sounds like you need a very similar thing, a new surgery, not yet available to humans.  Maybe he can help with his experience? Worth a shot.. 

[RichGotsPots]

On 7/29/2019 at 12:33 PM, Derek1987 said:

I did two 24 hour urine tests. They said they couldn't get a result. They actually drug tested me because they thought I could be diluting the urine test with water. So I got nothing from that. But I did do blood work during a TTT. She said my adrenaline was elevated when I was standing but they screwed up the test results somehow. She was like we didn't collect the result properly. So I don't even know what that means but I do have higher adrenaline when standing. 

 

So it sounds like me seeing this specialist for the adrenal glands is probably a waste of time most likely. I'll still go but these medical bills keep growing. 🤦‍♂️

Sounds like you need to make calls and find a doctor who can do an accurate postural Catecholamines testing. It does not need to be done during a ttt you can do it in anyone’s office during a poor-man ttt. Just lay quiet for 10 minutes have blood drawn, then stand up slowly and stand for 15 minutes and have it drawn again. The key is for the drawn blood to be immediately put into a cooler after both draws and kept in a cooler and shipped to Mayo lab in a cool. And you should also have a separate vial to a G-Achr antibody because that also needs to be put in a cooler and sent in a cooler so might as well have that done and shipped together.  It’s better if the doctor is supervising this instead of a local blood lab who may not be as careful..

[RichGotsPots]

12 hours ago, Pistol said:

@Derek1987 - you stated in another article that you have been referred to Vanderbilt. They will be able to do the testing properly and will also be able to give you diagnosis and treatment suggestions. They also will be able to explain everything that is going on so you will understand it. Personally - if for financial reasons I had to choose between the adrenal guy and Vanderbilt I would pick Vanderbilt b/c they can determine if you have adrenal issues. 

I agree plus Vanderbilt is a 10 top hospital in America. They not only have top Autonomic specialists and lab all their other specialists are top notch. Try to see a bunch from Endo, to Rheumatologist to infectious disease. As many as you can..

[bombsh3ll]

On 7/30/2019 at 11:45 PM, RichGotsPots said:

Unfortunately and pet peeve of mine, are these “principles” taken as matter-of-facts in Dysautonomia without any studies to prove them.

Same here. Another one is the advice to consume boatloads of salt - only two very short term studies that I have come across showed this to result in volume expansion. As far as I am aware there is as yet no evidence salt loading leads to chronic volume expansion. Based on the principle that our bodies continually seek to restore homeostasis, it is highly likely this is only transient until we adapt to peeing out higher levels. This is actually more concerning to me than the bed raising as it has the potential to do more harm.

On 7/30/2019 at 11:45 PM, RichGotsPots said:

Renin Aldosterone ratios. And what % of  Dysautonomias people have have abnormal levels.

I do fit into the category with low (undetectable) levels of renin & aldosterone, but doubt that this is universal & would like to see much more research into this, as well as into natriuretic peptides which have been found to be raised. 

On 7/30/2019 at 11:45 PM, RichGotsPots said:

As far as inventing the surgery you need, you should contact Doug since he has been through it.

I would love to speak to Doug, does anyone have his contact details? 

B xxx

[Pistol]

On ‎7‎/‎29‎/‎2019 at 11:38 AM, bombsh3ll said:

or the principle of sleeping with your bed on a slant which is a nice theory but the only study documenting benefit from the latter combined it with fludrocortisone.

 

On ‎8‎/‎1‎/‎2019 at 12:46 PM, bombsh3ll said:

Same here. Another one is the advice to consume boatloads of salt - only two very short term studies that I have come across showed this to result in volume expansion. As far as I am aware there is as yet no evidence salt loading leads to chronic volume expansion. Based on the principle that our bodies continually seek to restore homeostasis, it is highly likely this is only transient until we adapt to peeing out higher levels.

I would like to add that both sleeping with the head of the bed elevated and salt loading are widely recommended by autonomic specialists in the treatment of POTS and have shown to be effective for many patients. 

[bombsh3ll]

8 hours ago, Pistol said:

I would like to add that both sleeping with the head of the bed elevated and salt loading are widely recommended by autonomic specialists in the treatment of POTS and have shown to be effective for many patients. 

Does anyone know of any published scientific research supporting that? I would be really interested if there is, as these are both measures I have tried. Dr Levine's study makes references to these practices in the discussion section, stating something to the effect that whilst the patients in the study were encouraged to do these things, so possibly this could have helped instead/as well as the exercise, these measures do not seem to prove effective in clinical practice. 

Not to say nobody benefits or should stop doing these if they find it helpful, just that it doesn't appear to have an evidence base that I am aware of.

B xxx

[yogini]

On 7/30/2019 at 6:45 PM, RichGotsPots said:

Unfortunately and pet peeve of mine, are these “principles” taken as matter-of-facts in Dysautonomia without any studies to prove them.  Just tilt your bed upright, I mean come on, I don’t know anyone who that ever helped and if it did then we do not know if it is placebo of it did anything to Renin Aldosterone ratios, as far as I am aware. And what % of  Dysautonomias people have have abnormal levels. Mine have always been normal over the years. If normal we do not know if it is at all advisable to do that. But still like gospel that is repeated to ever patient. Smh

 

It's been studied.  See for example here:

https://www.ncbi.nlm.nih.gov/pubmed/19015909

[bombsh3ll]

9 hours ago, yogini said:

https://www.ncbi.nlm.nih.gov/pubmed/19015909

Thanks for sharing, that is really interesting! Although only 12 people were studied & no control group was used, it does support a volume enhancing mechanism which is what most of us with OI could use. It never worked for me but I continue to keep my bed on a small slant (approx 10 degrees) now (previously is was raised to about 30 degrees).

B xxx

[MTRJ75]

Saw him on Dr Oz this week. The key things that stuck with me are that he's still on 9 medications and said he's still being held together "by duct tape", but it's still far better than being bed bound for 22 hours a day. 

He talked about the genetic component with his mother and aunt afflicted too. 

He talked about being able to lay a piece of loose leaf paper on his chest and visually see it flutter. This really resonated with the same thing happens with anything placed on my chest. 

I've been being watched for adrenal nodules since 2013, which my endocrinologist says are benign and inactive. I must have read or heard about him or this condition previously because I remember asking her about them causing dysautonomia symptoms and she said that's not what's happening. I think I'm going to bring this up with her again. Nobody wants to start messing around with their adrenals unless absolutely necessary and it certainly didn't even solve all of his problems, but you also definitely want doctors to cover all the bases when we're dealing with issues that still aren't always very well understood. 

[DizzyPopcorn]

1 hour ago, MTRJ75 said:

He talked about being able to lay a piece of loose leaf paper on his chest and visually see it flutter. This really resonated with the same thing happens with anything placed on my chest. 

Except this is normal in many healthy patients with no dysautonomia? My father included and he does just fine.

I do the same (for example, if i put my cellphone on my belly it will pulsate with it) but never really thought anything of it...

[MTRJ75]

Interesting. I know it's something I haven't experienced and certainly not felt prior to the last year. 

[DizzyPopcorn]

9 minutes ago, MTRJ75 said:

Interesting. I know it's something I haven't experienced and certainly not felt prior to the last year. 

To the best of my hypochondria knowledge, i had this since my teens and my father had this for a very long time. Its probably genetic but not something to really worry about in absence of pain, etc.

[Pistol]

I had this since childhood. The aorta is right there and things will flutter, move or pulsate if positioned on the upper abdomen/ lower chest. Harmless and normal in my case. I would like to add that when I was younger and leaner this happened more dramatically, not so obvious since I have gained a few pounds due to inactivity ( still normal BMI though ) .

[MTRJ75]

Hmm...maybe it's because I have lost so much weight the last few years that it is now visible. I just associated it with the total inability to relax due to this bouncing feeling that's still fairly new.