What is the crowd's opinion of The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients?

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That's so sweet of you to want to help! For me, the biggest thing is for people to educate themselves on my illness. Maybe you want to read this book:

Dysautonomia Book

Honestly, just knowing that you care is going to be the sweetest thing you can do. As time goes on and you understand the nuances of this person's particular symptoms, things will easily fall into place if you care.

Have you tried any medication for it? Midodrine and ivabradine are drugs to consider. I've just started Midodrine and the difference is incredible.

I recommend reading this book: https://www.amazon.co.uk/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243

This sounds like it could be dysautonomia, and could also be comorbid conditions like a hypermobility disorder or a mast cell disorder. I have all and I have all of the issues you describe, including GI issues and frequent urinary infections/overactive bladder. If you update where you are located generally someone may be able to refer you to a doctor in the area that is familiar with these conditions! Some people get diagnosed by cardiologists or neurologists, my provider that finally made the connection was a Naturopath—due in large part to the longer appointments meaning I could discuss more issues and also she has experience diagnosing the condition (I’m in the Portland, OR area)

If you really think you have Dysautonomia, and have a provider you already trust like a family doctor that isn’t familiar with Dysautonomia you can consider purchasing this book for yourself and sharing it with them to read the accompanying parts for medical practitioners: Dysautonomia Project

I recommend putting the salt in capsules (OO capsules hold approximately 1gm each) or getting tablets. Here's the book I suggest:

POTS Book

The Dysautonomia Project is the title of a book my cardiologist recommended and I know other people with POTS have read it and found it helpful too. https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243

Hello again!!!!

It’s absolutely not ridiculous!!! You’re in pain, and you want answers.

That, btw, would be my focus: not that you think something is wrong, or want it to be (insert condition), but that (insert symptoms) are a problem, and (insert condition) might be a possibility.

None of us want to be sick. We ARE sick, and we just want to know what’s wrong.

I also always go thru and group my symptoms to support my “theory”.

Example: dizziness, shortness of breath, pain after eating, nausea, slow digestion. How often, what sets it off or makes it worse, what makes it better, what else is going on when it happens.

Then I explain why I think it is what is: Talked with people with endo who had the same condition, their experience resonated with me. Understanding that “rare” conditions are often rarely diagnosed not necessarily rare in occurrence. Then I end with mentioning the difficulty getting diagnosed with endo, and how I don’t want to repeat that experience - these are legitimate conditions, and I want to know why they’re not options to rule out. Being rare isn’t a good enough reason.

I will also say that if the CT was clear, there may be pushback on MALS, since it’s the first test run, and everyone expects the “hook” to be clearly seen.

But it’s not the only test. It’s also a single snapshot of a condition known to change with position and even breathing. Typical imaging is done on the inhale, when MALS is least compressed. CTA for MALS diagnosis has images taken on both inhale and exhale.

As a result of the finicky testing, plenty of folks have CT, or even CTA where nothing shows. I did, and I had 3 massive compressions! My left common iliac was 91% compressed, my left renal was 70% compressed, and my median arcuate ligament was wrapped around my celiac artery, strangling it. NONE of that showed on CT/CTA.

But there were signs on Doppler ultrasound. NCS/MTS were confirmed with tilt table venogram/IVUS (arteriogram would be used for MALS).

There are also articles and case studies about POTS being a secondary condition to MALS. The doc can test for POTS in the office - just look up “poor man’s tilt table test.” If you want me to message you, I can also send you photos of the section on testing from The Dysautonomia Project (an excellent book, btw, link here). If POTS is confirmed, it’s another argument for the MALS diagnosis.

So sorry you’re going thru this. Hope this helps, and that all goes well.

>I have autonomic dysfunction, and one of the ways it manifests in me is that I have more or less a permanent fight or flight response. Because of it, I get about 1 minute of REM and two hours of light sleep a night, and wake up on average every two minutes because my limbs jerk. My specialist told me that I'm at such an advanced stage of deprivation that I'm used to it.

At that point I already go: "Alright, this is WAY over my head".

The advice I gave is aimed at relatively normal people. I have no way of being able to give you advice and know with any certainty if that will do you good or bad, so I can't give you the confirmation you are looking for.

I don't know how old you are exactly, but I'm guessing you're sort of at that point where you realize that the specialists can't help you and now you're trying here because you're getting desperate? Because really, you shouldn't be asking here.

The normal approach that I recommend for that is that you become your own specialist. Which in most cases is doable because they are common mental health disorders (that's just 99% here) and I generally can even give them instructions on how to get started.

In your case, I recommend you go back to the basics first and start studying your disorder. I found these two books that I suggest you buy and read:

https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243

https://www.amazon.com/POTS-Together-Stand-Riding-Dysautonomia/dp/1466371501

(I don't know if autonomic dysfunction is the same as POTS, apparently it's the same as Dysautonomia - my point is find books and start reading).

You're dealing with a rare disorder, this is what it's like. There are people that know everything that you need to know, but they are harder to find.

And of course go here and start asking and participating: /r/dysautonomia/

I understand that feeling! Do you read books? I got this one:

https://www.amazon.com/dp/1938842243/ref=cm_sw_r_cp_apa_i_E1MdFbJB1P21E

It's really helpful.

https://smile.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243/ref=sr_1_1?ie=UTF8&qid=1469366892&sr=8-1&keywords=dysautonomia+project