Autonomic PN - How Has it Affected You?
 

I've got large/small fiber PN with demylination and great deal of fiber loss and axon degeneration - genetic - full body... that pretty much sums it up... the autonomic portion includes gastroparesis - I am able to survive on liquids at least, a good thing - but wonder if any of you who have heart complications have cardiomyopathy?

I've had heart rythm problems for years that require constant meds and monitoring but thats ok - the meds keep things working ok for the most part and have stopped some serious tachy runs in the past. But I'm developing over the last few years progressive cardiomyopathy and recent tests show kinda a big progression (shows on enchos and BNP bloodwork) - does anyone know if this is a typical manisfestation also of the autonomic symtoms? (its typical for amyloid and I've had positive and negative biopsies over the years for this - but they havent been able to pin it down so havent worried about it - my cardio is leaivng it up to me if I want the testing cause theres nothing really more to do then control the heart symtoms because of the severity of the PN cant have any traditional amyloid treatments anyway)..

Again, anyone find this typical for your auotnomic complications?????

Appreciate any feedback:confused:

Hi Kmeb,
Long time. I don't know if cardiomyopathy would be typical of autonomic neuropathy. I have read on many sights that autonomic symptoms can present with cardiac manifestations such as tachycardia or bradycardia. I go tachy sometimes myself and had extensive cardio work-up that was inconclusive. I am also on a Beta Blocker. My brother has heart disease, it started at 35 with left bundle branch block or BBB that caused a big heart attack. He was very unwell for about a year but he is ok now. My mum also has BBB and my mum has told me that my grandmother was on heart medication since she was a young woman for moderate arythmia. She lived until 86 with this condition. None of them have or had PN only me. Too what extent PN affects ones heart is unclear to me. But if they are offering you a work up maybe you should think about doing the testing. It may not be autonomic related.

Hi kmeb, I do not have autonomic PN, but I too have heart rhythm problems, and have had them for over 30 years. I have gone through bouts of tachy, and especially horrendous pvcs. I take different medications for this. This is all genetic. My brother and sister also have this problem, but my sister also has cardiomyopathy. She has had it for fourteen years and has managed it with medication. Lately, it has gotten worse, but she has put on a lot of weight. The doctor has told her to lose it and get as healthy as she can. I'm sorry that you are having to deal with this. Just know we are here to support you, and I am going to think positive thoughts for you....:hug:

Autonomic Neuropathy
 

Interesting post although I can't help you with your specific question!

I am currently on Domperidone (Motilium) for Gastroparesis in conjunction with Peripheral Neuropathy - so ??? Autonomic Gastroparesis. However my Gastroenterologist wants to try me on Cisapride (Propulsid) which has been removed from global markets because of cardiac side effects but is attainable on special request. I have had an ECG done and depending on those results will commence (or not) on Cisapride next week when I see the GI specialist.

The Domperidone has helped the constant nausea significantly but the GI doc thinks that Cisapride may help me be able to eat solid food after six months of having had only a liquid diet.

So I guess my query is, if something cardiac happens to me in the future, how will I know if it is due to the meds or due to the Autonomic Neuropathy advancing?? Are you suggesting that rhythm problems are the main manifestation of Autonomic Neuropathy?

Hi Megan... We don't have Motilium here. Or Propulsid either.

There are several ways that Propulsid can affect you.
This website is a good reference for drugs that add to the cardiac potential:
http://www.azcert.org/medical-pros/d...drug-lists.cfm

1) for people with genetic or other reasons (like neuropathy) who are prone to QT events an EKG is a must before starting therapy. It will set a base line to compare other EKG's after you start.

2) taking other drugs that also prolong QT with Propulsid can be a problem. That website has lists to check.

3) If you don't show any risk, but become dehydrated on this drug and become low in potassium and magnesium, then a QT event can happen that way. (One reason this drug was pulled is that doctors continued to give it to people taking diuretics for blood pressure which lowered one or both of those electrolytes)

4) Propulsid interacts with other drugs like erythromycin and antifungals. They will probably give you a list to avoid when you receive it.

Propulsid is a wonderful drug otherwise, for those with motility issues. I took it myself years ago and so did my CAT for a hairball problem (1/4 tablet). I hope it works for you.

Thanks Folks
 

My heart rythm problems preceded my PN by about 8 years, the cardiomyopathy has developed over the last few years - after PN and gastroparesis onset....

The heart rythm problems they first thought were "Wolf-Parkinson-White" and I've had an attempted heart pathway abalation - was when in the early stages of the procedures life and they had to stop after hitting a nerve (literally) in my chest - partway thru.... they wanted to do again but it was not a fun procedure (being awake while someone is sticking wires into my heart is not my idea of fun) - and so we went the beta blocker route and if I get a bad attack - just take more of the med asap and lay on the floor (so dont fall if pass out) and hope it stops - of it goes past about 15 mint at 180 or over I'm supposed to call 911. It has done that - but I'm still here....

Then the PN hit - and the severe gastroparesis, and they made the connection to autonomic PN (they didnt even bother doing the tilt test - the cardio said he KNEW I would fail it just by my standing and sitting BP and didnt want to put me thru it for nothing - I'm on board with that)

Again, the cardiomyopathy does not seem to be part of AN..... and I had a relative die younger then me from it (was too long ago to get exact cause)

The GP (Gastroparesis) drugs can have bad side affects - all of them... the doctors will not let me near propulsid - for good reason cause of the cardiac side affects.. I know many people that take motilium (domperidone) and I've tried it too (prescription written by Amer. docs - but I have a constant headache from it) and it works well for them and doesnt leave one with bad side effects of reglan, another motility med sold here but very strong and can have nuero side effects in addition to many others.... motilium can bother you if you have Long QT too - another heart rythm condition.

Overall - very small selection of drugs to treat GP to start with and they all have the potential to have very bad side effects - and docs usually have to mix motility and anti-nausea meds until they find a cocktail that works for you.... and you tolerate them because without you wouldnt be able to keep anything down otherwise....

Megan - no matter what med you use - switching diet to solids from liquids is a big shock to your system.... hope it works - but be patient and I'd be sure to stick to a gastroparesis recommended diet for what you do eat and again, just do very slowly....

Aussie and Hope - sorry to hear others dealing with cardiac issues and fam. too - meds help tremendously in this area..... hope they continue to help you
and fam members.... I'm the only one of my generation with any cardiac issues - so docs are stumped.... (again, I dont want a cardiac biopsy for amyloid if theres no treatment they can offer other then what I'm already getting for everything - which there isnt.....would love to be able to just chaulk it up to AN)