anyone with Dysautonomia...? - Mothering Forums

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#1 of 12 Old 12-19-2009, 09:17 AM - Thread Starter
 
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I was diagnosed with Dysautonomia back in 2007 but was JUST made aware of it a few weeks ago...my primary doc didn't take the time to read the letter my cardiologist sent him 2 years ago...totally lost in the paperwork...

Sooooo....now I'm here with this diagnosis and I'm too scared to read anymore info online. I get to see a real live specialist in March 2010...have to wait, no one else in the area to see and he never has cancellations...

From what I can gather online, I have PAF - Pure Autonomic Failure...that name is enough to freak me out. But I'm not freaking, just waiting to see the specialist... But I need some guidance in what works for others.

I currently take licorice root, eleuthero, and salt. And steer clear of processed foods, caffine, and white flour/sugar...

What works for you? Thanks...
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#2 of 12 Old 12-19-2009, 09:20 AM - Thread Starter
 
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oh, and I only eat small meals throughout the day. Thanksgiving almost killed me. I didn't actually eat too much, but I'm sure my FIL's wife didn't use unprocessed food and I could barely breathe for hours afterwords - I'm supposing since my body was trying to digest the crap I ate, thus taking blood/energy away from my lungs/heart area...

I almost died back in 2007, got better, but the same symptoms that got me in the ER in 2007 have come back - roaring in the ears, loosing my hair massively, and that damned fatigue and breathlessness...
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#3 of 12 Old 12-19-2009, 04:57 PM
 
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What are your symptoms and what tests did you have to dx. that?
I've got nervous system and other health issues. It took a while to get to the bottom of it. Dysautonomia can be on it's own or part of another condition and it sounds like you've got other stuff going on so maybe there is an over-all dx. for you too. I will say read with caution. The way dysautonomia plays out in people varies quite a great deal. Take what you read with a grain of salt. Have your issues progressed in this time frame?

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#4 of 12 Old 12-19-2009, 07:13 PM
 
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Have you read THE Adrenal Fatigue Thread? It has a lot of similar symptoms and some alternatives which might help. Have you had 24-hour hormone saliva testing done? And thyroid antibodies, etc? I'm also curious if you have/had any mercury fillings in your teeth? There are a lot of detox supports which might help, imo.

Also, homeopathy helped me with the orthostatic hypotension, palpitations, and syncope, tinnitus, motion sickness, etc.


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#5 of 12 Old 12-22-2009, 05:03 AM - Thread Starter
 
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yes. I've been in the Adrenal Fatigue form for 2 years and have 'healed' my adrenals. I thought that's what I had too...but now, with my adrenals healed, all the symptoms are coming back a vengeance.

all my blood work is 'within the range' so I'm left with

Brittany Murphy just died. And I am speculating here, but all the symptoms that they are listing - the 'flu like' feelings, feeling out of it - sounds a lot like dysotonomia...maybe because it's all I can think about. But I almost kicked the bucket 'suddenly and unexpectedly' with those same symptoms.

right now I have the roaring in my left ear, numbness in my back, shoulder/upper back stiffness, headaches (which I haven't had in years), and I get totally wiped out from doing NOTHING!!!

I am an active person and I love living life to the fullest. This crap is killing me and I want to know what the hell is going on.
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#6 of 12 Old 12-22-2009, 10:37 AM
 
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Do you consume anything with MSG? It is a neurotoxin.

Neonatal treatment with monosodium glutamate (MSG) induces severe neuronal damage.
http://endo.endojournals.org/cgi/con...ract/115/1/267


Relief of fibromyalgia symptoms following discontinuation of dietary excitotoxins
CONCLUSIONS: The elimination of MSG and other excitotoxins from the diets of patients with fibromyalgia offers a benign treatment option that has the potential for dramatic results in a subset of patients.

"The FDA did admit that some people could have short-term reactions to MSG. The negative symptoms to eating MSG include:
· Headaches
· The feeling of swelling in the face
· Flushing and or sweating
· Rapid fluttering of heartbeats or heart palpitations

· Nausea
· Chest pain
· Shortness of breath
· Numbness, burning or tingling around the mouth area
· Weakness



If you ate enough foods all day that contained MSG, it could build up in your body. This could lead to some of these symptoms later at night including the heart palpitations."
http://factoidz.com/the-facts-about-...d-your-health/

This happened to my cousin who ate McDonald's sausage biscuit each morning for about 3 months. She could not walk due to numbness and pain in her muscles, short of breath, palpitations, nausea, etc. When she quit the sausage biscuit, all symptoms resolved.


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#7 of 12 Old 12-22-2009, 11:10 AM - Thread Starter
 
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I've taken MSG out of my diet for years now. I just started taking HFCS, white flour, and caffeine out as well...

maybe gluten? everyone seems to be allergic to it now...
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#8 of 12 Old 12-22-2009, 11:16 AM
 
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Quote:
Originally Posted by MommyHawk View Post
I've taken MSG out of my diet for years now. I just started taking HFCS, white flour, and caffeine out as well...

maybe gluten? everyone seems to be allergic to it now...

Check the hidden names for MSG and the sources in our food: http://www.mothering.com/discussions...g#post12919366

I was shocked at some of the sources (like Bragg's Amino Acids). And had no idea that Hydrolyzed anything is basically MSG.



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#9 of 12 Old 12-22-2009, 04:09 PM - Thread Starter
 
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Quote:
Originally Posted by WuWei View Post
Check the hidden names for MSG and the sources in our food: http://www.mothering.com/discussions...g#post12919366

I was shocked at some of the sources (like Bragg's Amino Acids). And had no idea that Hydrolyzed anything is basically MSG.
HOLY CRAP!!!!! Why on God's green Earth are they trying to KILL US!?!??!

I steer clear of everything I can, but this list will help me steer clear of even more...I so with I could go back in time - like hundreds of years ago - so I could eat and live a healthy life....
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#10 of 12 Old 12-22-2009, 04:19 PM
 
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Check your vitamin D3 level (25 (OH) D specifically, some doctors run the wrong test). This is often low with other issues you have and can cause a lot of damage including some of what you mention. It seems to simple with major issues (I had those too) but it really made a big difference to fix my level.

I had sleep apnea and don't fit the profile for that. It also does a lot of damage.

Dysautonomia is sometimes caused by (and is often a feature of) mitochondrial disorder which my son and I likely have.
Consider having your coq10 and carnitine levels checked in the least. Doctors don't typically check those. Mitochondrial disorder can be adult onset and can cause everything you've mentioned. http://www.mothering.com/discussions...d.php?t=734501 (desription in the middle of symptoms of mito, dysautonomia would be under nervous system...three different areas are affected (fatigue is another area and is usually a prominent symptom))

If you do a google of dysautonomia +mitochondrial you'll see tons of hits and can read up on the connection between the two. But in short it's worth looking into this for you I think.

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#11 of 12 Old 12-22-2009, 04:22 PM
 
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Quote:
Originally Posted by WuWei View Post
Relief of fibromyalgia symptoms following discontinuation of dietary excitotoxins
CONCLUSIONS: The elimination of MSG and other excitotoxins from the diets of patients with fibromyalgia offers a benign treatment option that has the potential for dramatic results in a subset of patients.
What are the other dietary excitotoxins besides MSG and aspartame?

Ruth, single mommy to Leah, 19 (in Israel for another school year), Hannah, 18 (commuting to college), and Jack, 12(homeschooled)
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#12 of 12 Old 12-22-2009, 04:46 PM
 
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I want to add that fibromyalgia can also have underlying mitochondrial dysfunction as a cause and mitochondrial disorder is (I believe) impacted by MSG and aspartame. Those two are the biggies but there are other amino acids that have some roles. Glycine has issues for example.

The mito piece is why you read of chronic fatigue or fibromyalgia patients benefiting from coq10

Rachelle, mommy to 8 year old boys! 

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