Anyone Have Pure Autonomic Failure?

[Sheila1366]

I am starting to wonder if this is me. SO much failing.

Just wondered if anyone here has this diagnoses.

Thanks,

Sheila

[hippychic258]

What are all your symptoms Sheila? Are you bedridden at all?

[Sheila1366]

I have noticed that more and more after eating anything or even drinking, I will get very lightheaded and end up having to go to bed cause I get so tired. My heart will beat irregulat too. I also have colonic inertia, severe constipation. Gastroparesis also. The back of head hurts including headaches. Face even goes numb at times after I eat or drink anything. It seems that when I have anything in my stomach my bp goes down. I also have hypoglycemia now. Starting to develop problems with my bladder not emptying very well. I am not bedridden but at times depend on a wheelchair cause of severe fatigue from low calorie intake and at times my legs give out on me. Have had many occasions where I will just go out after eating or drinking anything. I just become so weak,lightheaded and unable to walk.

I am so glad I will be going to Vanderbilt. My cardiologist,familydr.,urologist and motiltiy dr. all fill my autonomic system is failing. My family dr. mentioned shy-dragers.

It is all scary. I have been very sick now for 2 years. Down 70 pounds so far due to gastopraesis and colonic inerita. Feeding tubes have been mentioned a few times but I fighting as hard as I can to stay off them. Infections can be very serious with tubes. But if my life depended on it, I would do it.

Also, I have noticed my fibromyalgia has gotten much worse. Pain at times is worse than my abdominal pain.

[jangle]

I have noticed that more and more after eating anything or even drinking, I will get very lightheaded and end up having to go to bed cause I get so tired. My heart will beat irregulat too. I also have colonic inertia, severe constipation. Gastroparesis also. The back of head hurts including headaches. Face even goes numb at times after I eat or drink anything. It seems that when I have anything in my stomach my bp goes down. I also have hypoglycemia now. Starting to develop problems with my bladder not emptying very well. I am not bedridden but at times depend on a wheelchair cause of severe fatigue from low calorie intake and at times my legs give out on me. Have had many occasions where I will just go out after eating or drinking anything. I just become so weak,lightheaded and unable to walk.

I am so glad I will be going to Vanderbilt. My cardiologist,familydr.,urologist and motiltiy dr. all fill my autonomic system is failing. My family dr. mentioned shy-dragers.

It is all scary. I have been very sick now for 2 years. Down 70 pounds so far due to gastopraesis and colonic inerita. Feeding tubes have been mentioned a few times but I fighting as hard as I can to stay off them. Infections can be very serious with tubes. But if my life depended on it, I would do it.

Also, I have noticed my fibromyalgia has gotten much worse. Pain at times is worse than my abdominal pain.

Have you had ACHR-autoantibodies tested?

[Dizzysillyak]

What are you eating ? Imho, these sound like normal reactions to eating foods we're intolerant of.

Gluten, casein, caffeine, hfcs, soy, corn, etc are common food intolerances. Candida is another

possibility. In which case, taking probiotics might help. But killing off excess candida may he required. I'd try s boulardi too.

You may want to keep a food diary. Tc .. D

[gertie]

Sheila1366, I've experienced everything you've mentioned in all your posts & more. I'm sorry you're going through

this. I'm glad you're going to Vanderbilt, hopefully they will be able to help you. I lost a lot of weight when this first

happened to me. For a long time the only food that did not seem to cause a reaction for me were potatoes, carrots,

& green beans, all organic. I reacted badly to supplements also. As time went on I gradually added more foods. It

wasn't easy but you must try to eat. I passed out a lot from hypoglycemia as well as low blood pressure. I had & have

more symptoms than I can list. We'll be waiting to hear the results of you Vandy trip.

[Sheila1366]

Thanks everyone. I haven't had any bloodwork so far. Everyone, dr.'s , are waiting for me to get into Vanderbilt.

I have been tested for celiac, so that is not an issue. I can get lightheaded even after drinking water. It's just anything in my stomach,and since it emptys so slow I think that is causing some type of drop in bloodpressure. I read that this was a symptom of PAF.

I am back on liquids right now. My motiltiy dr. had me taking remeron. For me and in some it can cause you to eat even if you have no appetite. I was eating solids....mashed potatos,white rice,crackers,humus and peanut butter. My gut was killing me. I got a little obstructed. Took 6 doses of miralax to get anything going and still I am struggling.

My heart gets very out of rythme too.I did have an echo gram and wore a monitor for 48 hours. Heart rate would get very low especially at night and it was beating irregular many times. My cardiologist said it is dysautonomia but he is not sure what type, poosibly autonomic failure.

I did get rid of all caffine,soft drinks.

Another thing that has happened is my ears will hurt really bad when I get close to fainting. Feel as if they are going to pop.

I know PAF is mostly seen in men.

I am anxious to see Dr. Robertson at Vanderbilt. Getting all my tests togther. My tilt was in 2007 and it was positive. Stress test was in 2007 also and it was normal.Looking for some help, I am a wife and mother. Have 2 daughters , one has special needs and they both have health issues. Wondering if we have a genetic issue.

Thanks again for the help and support.

Sheila

[Dizzysillyak]

Celiac disease is just one form of gluten sensitivity. "Theglutenfile" covers this. What you were eating would've made me sick too. Try organic meats, fruits and veggies. And bottled spring water.

It took me 6 - 12 months to stop most of my digestive issues.

[Sheila1366]

Thanks for the help but I can't eat meats without having alot of issues. Been dealing with this for 2 years now. Dr. Koch gave me a GP diet to go by.I eat what I can with the least amount of side effects. Believe me it's not by choice. I also drink a protein drink that my nutritionist has approved for me.She has given me a list of safe foods also.I don't eat for the joy of eating anymore, it's for survival.It's very difficult living this way and I have had some of the best motiltiy dr.'s working with me.Not everyone is the same and what works for one does not always work for others.

[Dizzysillyak]

Hi again,

I was responding to your comment that you were tested for celiac disease so gluten isn't a problem.

Sadly, this is the old way of thinking about gluten damage. I've only been in the web since 2005 ,but I've

found numerous studies showing that gluten damages more than the gut. Theglutenfile is just

a handy collection of these.

I totally respect that you're following your doctors and nutritionists orders but wanted to say that's

what held me back for 15 1/2 years. I've found newer info on the web that most people in the

healthcare field aren't up on. Like dr terry wahls diet or the paleo diet.

We are different in many ways but alike in more. We all need basically the same nutrients to survive on this planet.

This is what the paleo diet is all about.

Fwiw, I'm not trying to be a pest. It's just that your list of symptoms sounds just like me in 2005.

tc .. D