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Symptoms Of Pure Autonomic Failure


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#1 adamandbensmom

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Posted 14 May 2011 - 04:44 PM

Hi, I'm pleased to be a new member of this group. I've been diagnosed with pure autonomic failure

Went to the Mayo Clinic (AZ) to consult the experts, but never saw any because I had a heart blockage and ended up getting a pacemaker. With my heart condition, doctors decline to use a medication like Midodrine that will raise sitting and lying blood pressure.

I'm taking Lexapro (partly for depression) and Ativan, and using non-med interventions like compression stockings and an abdominal binder. I bought one of the new Genie mattresses that raises the head of the bed substantially like a hospital bed, but I haven't tried it yet.

I'll welcome your comments on these predominantly non-medication interventions for my disease (lots of dizziness and nausea). Are they working for any of you?

Thanks--AdamandBen'smom

#2 sam76

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Posted 14 May 2011 - 07:28 PM

Hi. I have PAF & can't take midodrine because I also have heart valve problems. The stockings help me some, but I can't wear them in the summertime. I sleep on a wedge that elevates my head, but I haven't noticed any difference. I have gastroparesis because of PAF and understand the nausea. I throw up, too. I hope you find some relief for the many symptoms that go along with this illness.

#3 mwise

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Posted 14 May 2011 - 08:09 PM

Welcome to the best knowledgeable and loving forum family here. Have you tried Mestinon or Florinef? These 2 drugs may be alternatives to Midodrine. I am on both Midodrine & Mestinon which helped me to walk and do simple daily activities again after being bed, chair & couch bound.

I also have Gastroparesis and GERD. I am taking Domperidone 20mg before meals & at bedtime for nausea & motility. I get it from Canada. I was not able to tolerate Reglan or Erthromycin. The Mestinon also helps with motility. I take Prilosec for GERD.

I salt load, wear compression stockings, eat low fat/fiber diet 6 small meals a day, drink lots of fluids some low in carbs and do other vitamin supplements such as Alpha Lipoic Acid, Extra Vitamins B, C, D along with Moducare-Immunity pills. Many of us here are a work in progress trying to find the best treatment to treat our symptoms.

A great big Hug and welcome to you :)

#4 corina

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Posted 15 May 2011 - 04:00 AM

hi adamandbensmom,

welcome at our forum! when you check out the website you'll find a lot of information in f.e. the "what helps" section and "what to avoid". there are links to learn more but most of all the help and understanding from our members might bring you comfort.
glad you found us!

corina :)

#5 718mom

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Posted 15 May 2011 - 06:04 AM

Welcome Adam and Ben's mom!!!!

I wanted to welcome you, I don't have PAF, but i have POTS and I have two kidddos too!
I was wondering how you are feeling and how much you are able to do each day?

There are so many knowledgable people here, you will surely find a lot of answers.

xo
718mom

#6 adamandbensmom

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Posted 15 May 2011 - 08:39 AM

hi adamandbensmom! i edited your post because it just had the quote. i understand of course that you're new to the forum so you're still learning how to use all the buttons! we prefer no quoting in posts as it makes reading quite difficult and takes a lot of space. you can answer other peoples writings by just mentioning their name. when you like to add a reply, just scroll down. on the right side there are two buttons. you can click on the left button "add reply". good luck in trying, i'm sure you will learn very fast!

Edited by corina, 15 May 2011 - 11:15 AM.
removing quote


#7 adamandbensmom

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Posted 15 May 2011 - 12:53 PM

718 mom, my kiddies are all grownup
they look out for me instead of vice versa. Don't know how i would cope with little ones in the midst of this illness. I wish you all the strength and resolution you need. Adamandbensmom