Autonomic neuropathy
 

This is my first post on behalf of my husband. He has had idiopathic peripheral neuropathy for about 8 years - he is 62. It started in his feet and has progressed to his lower legs and hands to some degree.

He recently passed out and was diagnosed with ventricular tachycardia.

However he as many other symptoms, which have also developed fairly recently, and I am now beginning to wonder if his neuropathy has become autonomic. Difficulty urinating, excessive sweating, shortness of breath, face pallor, face flushing, extreme fatigue, nausea/heartburn.

We have mentioned all this to his GP, who is normally very good, but he said a lot of these symptoms can be put down to his meds - Gabapentin, amitriptylene, morphine and now beta blockers.

Does anyone have any experience with autonomic neuropathy? Is this a likely progression from the peripherial neuropathy?

I haven't expressed my "fears" to my husband yet, but would be interested in any thoughts?

Thanks, Linda

I am truly sorry about your husband.
I hope this link will help you get some information about Autonomic Neuropathy.

http://www.patient.co.uk/doctor/Auto...Neuropathy.htm

Welcome to NeuroTalk:

It is true that some side effects you describe are common with the drugs. A person who has shortness of breath, should not be on beta blockers. This can result in a bronchospasm, which can be life threatening. What is your husband taking a beta blocker for? Fatigue also from beta blockers and morphine, and gabapentin. Beta blockers typically reduce aerobic capacity, such as running or climbing stairs.
Sweating can come from the morphine.

Amitriptyline is not indicated in patients with heart rhythm problems. What dose is he on? It can also cause urinary retention.

So the problem exists, and each drug needs to be looked at carefully and in combination with the others.

Here is a good drug checker:
http://www.drugs.com/drug_interactions.html

Sometimes one has to be emphatic with doctors when quality of life gets too low. Unless you are very vocal...they tend to ignore your discomforts.

Thank you for the replies. He is on beta blockers for the tachycardia - they regular his heart rate and blood pressure. He is also anemic, which obviously causes tiredness too - no known cause for that yet.

The hospital were aware of what drugs he takes when they put him on the beta blockers, and his shortness of breath. That isn't extreme, but is there on occasion.

So it's almost a damned if you do, damned if you don't scenario. I think too it appears to be a process of elimination - keep testing to rule out certain things. He is also going for a sleep apnea test.

I have to say that we have been lucky with his physicians and their treatment of him.

Good luck to everyone suffering from this horrible ailment.

I have Autonomic Neuropathy (POTS=Postural Orthostatic Tachycardia Syndrome), a form of Dysautonmia. I do not take meds so I do not know the side effects.

I have been taking Benicar for the rise in blood pressure but I am almost off of that now thankfully. I only take supplements for healing the nerves.

I have severe dysautonomia (or autonomic neuropathy) secondary to Sjogren's. I take multiple meds and have a pacemaker.

I can tell you that morphine (any narcotic really) can, and will, make autonomic symptoms worse...like the difficulty urinating, delayed stomach emptying, etc. But I also understand the need for pain mgmt. Although my dysautonomia started long before I got considerable pain from PN, I now have no choice but the treat the pain. Luckily only a few minor adjustments in meds were necessary. It is possible to manage both, but will take a little patience...and some persistence with the doctors.

Has he been worked up for POTS with tilt table test? With the added autonomic problems on top of PN, it might not be a bad idea to start exploring the cause of the PN...and now AN. This should include autoimmune testing, B12, and of course diabetes (GTT). What may have been explored 8 years ago (and nothing found) might now be ready to present itself, so some tests should be repeated.

Thank you again both of you for your replies. It would seem then it's a matter of exploring everything - he hasn't actually been diagnosed with AN yet, this is just my thinking. It's early stages for the V-Tach - the tilt table and Valsava test are out of the question at the moment because of that.

He has recently been given a work over for the obvious diabetes, B12, folate, autoimmune etc. and nothing shows. It never has, so it's always been idiopathic.

I suspect it's some kind of genetic dispostion - his father had both legs removed below the knew when he was in his fifties, for what was then called ciruculatory problems. He got an infection in both feet that turned gangranous(spelling?), and my husbands grandfather apparently always had painful feet which was called gout!

Linda

[QUOTE=en bloc;879899]I have severe dysautonomia (or autonomic neuropathy) secondary to Sjogren's. I take multiple meds and have a pacemaker.

I can tell you that morphine (any narcotic really) can, and will, make autonomic symptoms worse...like the difficulty urinating, delayed stomach emptying, etc. QUOTE]

Hi en bloc,

Lately, I have been experiencing abdominal bloating. This happens after eating. Today I tried eating a little during lunch because its after my lunch that I feel bloated the most. The bloating was not as bad as when I have my normal intake.

I have been reading about gastroparesis... it says that symptoms are slow emptying (bloating), vomitting, nausea, loss of appetite, etc. Among the symptoms, I have only the bloating.

My questions are:

1. How is gastroparesis diagnosed?
2. When you have gastroparesis, does it mean that you have Autonomic Neuropathy?
3. Should the typical symptoms of gastroparesis be all present to be considered as such?

Thank you.

1) Gastroparesis is diagnosed with an GI empty study. Basically you eat some scrambled eggs that have a little contrast mixed in and you lay down for 2 hours while the nuclear xray takes images (like every 90 seconds), tracking the food and determining the empty time.

2) gastroparesis IS an autonomic dysfunction

3) most with gastroparesis have more then just bloating. early satiety (fullness) is most common, along with nausea/discomfort after eating.

Hope this is helpful. You should see a GI doctor if your bloating does not resolve...it could many different things.

Thank you en bloc!

On Question No. 2, I know gastroparesis is an Autonomic Neuropathy (why did I ask that question, duh!;). What I meant to ask was, if one has gastroparesis, does it follow that one will have the other symptoms of autonomic neuropathy e.g. orthostatic hypotension, urinary problem, lung problem,etc.?

Another thing, if I have a SFN, is it common or is it likey that I will also have autonomic neuropathy?

I remember, though, several years ago, I had an annual physical exam and I had this test which I was made to drink what seems to be "milkish" in form and I lied down while the technician monitor the flow of that white milkish drink. I could vaguely remember that it took a while before the white milkish settled down. But, at that time, I was perfectly fine. The reason I had that test was because it was part of an annual physical exam package.

I dont feel nauseated nor have the urge to vomit after eating. But, I definitely feel full after eating even with small amount of food.

Also, the reason why I asked about other symptoms is because my shortness of breath (which accompanies the tightness in my front neck) has been persistent. It is not a shortness of breath that is like gasping for air. In fact, I do stationary bicycle 5x a day and do a short walk. I dont think that my s hortness of breath is due to asthma. I dont have wheezing and cough or any related asthma symptoms.

I am fearful that the shortness of breath may be another symptoms of another damaged nerve. I really really hope not..... I am seeing a pulmonologist in July.

It is quite common for those with gastroparesis to have other AN problems like you mentioned.

Those with SFN do commonly have AN also...but that doesn't mean it's likely. Much of the answer would go back to what's the cause of the SFN in the first place.

The 'milkish' drink then scan during your annual exam does not sound like an empty test. It sounds more like barium used with xrays (upper GI series).

It will be interesting to see what the pulmo doc says about your SOB. Maybe it's a diaphragm dysfunction, since you're not wheezing, etc. I'm sure he'll figure it out.

Well, I dont know the cause of this....in fact, my skin biopsy was negative! I wish I know the cause, so, it would have been easier to deal with it, emotionally. Not that dealing with the physical pain is easier but at least I know that it real.

If AN is involved, particulary gastroparesis, is the feeling of "fullness/bloating" persistent, or is there anytime that your abdomen feels normal? For the past 2 days, I have been reducing my already small intake (I am essentially not a big eater). Yesterday, I still feel so bloated after eating small amounts. Today, my stomach seems to feel normal. Each time after eating, I moved a lot to let food go down. Maybe that could be the reason why I did not feel so full today. Does gastroparesis improve with lots of movements after eating?

You are right, it could have been barium enema because I remember the test was Upper GI Series.

The shortness of breath is still bothering me. I searched about the diaphragm dysfunction...I hope it is not it.

Gastroparesis can be intermittent, so bloating/fullness may not be present after each meal.

There are several things that someone can do to help mild gastroparesis (without medicine). First, eat small meals more frequently. Seems like you already do this. But more then just the small meals, it's what those meals consist of. True gastroparesis makes breaking down food difficult (from reduced motion to grind food up). So avoid foods that are naturally hard to break down like nuts, raw fruit and veggies. I'm not saying skip veggies or fruit, just steam veggies, vs eating them raw in salads, etc. Same for fruits...change to a smoothy where the fruit is already broken down.

When I'm having significant problems, I follow a 'mechanic soft diet', which includes avoiding the above, but also means grinding up my food (meats, etc) so the stomach has to work less. Trust me, the TASTE of a steak does not change, just the consistency.

Getting up and moving around is the best way to allow gravity to help digestion, so you are 100% right about this. It is also a good idea to avoid eating in the evening, since those with GP might not have emptied their stomach by the time they go to bed...and that can cause some discomfort. I also sleep with my head elevated, just to help keep reflux (very common with gastroparesis) to a minimum.

When you experience the bloatedness/fullness, do you also feel short of breath? Do you feel relieved when you pass out gas?:D

So, even the (GF) oatmeal with blueberries and banana should be preferrably grinded? I notice too, it seems that even with just water while taking my medicines make me feel full.

Getting up and moving around after meal is not a problem to me. In fact, I have been doing this for a long, long time, only, I could no longer do as much as standing or moving around these days because of my feet pain. Tsk,tsk--- damn if you do, damn if you dont.

Thank you.

You should not feel SOB just from feeling full or bloated.

Oatmeal, bananas, etc are quite soft, so I would not worry about them. It's more meats, etc. that I grind up when gastroparesis is severe.

You should inquire with your GP or a GI doctor about a stomach emptying test if you continue to have problems and they have not found another cause for it.

I will see a GI. I am waiting for my PCP to issue the renewal of my authorization to my previous GI.

Is your AN an offshoot of your Sjorgren's? When you felt your nerve problems, which came first, the sensory or the AN?

With the constant bloated feeling, I am now reducing my food intake. I am concerned that I may lose weight. I dont want to lose weight because with my height and frame, I already look thin (5'6'ft/113.6lbs). I wanted to gain a little more weight but, I guess its my metabolism. When my thyroid was removed, the doctor warned me that I should not be surprised if I gained weight, but I never did. So, it makes me think there might be some problems with my metabolism that is contributing to my neurological problems.

Yes, my AN is also from the Sjogren's. And it came first before the PN. Actually, the AN was more pronounced before I was having major Sjogren's symptoms. I was diagnosed with AN almost 12 years before the Sjogren's...even though the Sjogren's is the root cause. It is not uncommon to be diagnosed with other manifestations of Sjogren's before actually being diagnosed with Sjogren's.

I am wondering why it took that long to diagnosed you with the Sjorgren's.

Was Sjorgren's ruled out because of your negative results?

Sjogren's was never really looked at as a possibility. An ENT mentioned it once after sinus surgery...just in passing, because he noted my tissue was extremely dry. He never followed up.

It's not a household name. Until the doctor asked, I had no idea that the grit feeling in my eyes or the dry mouth was really that abnormal...because it was normal for me...and it was the least of my problems. It wasn't until I went to a doctor at Hopkins for my blood clotting disorder (APS), that the physician asked questions about my extensive medical history...for over 2 hours. He suggested Sjogren's and ordered labs (which of course were negative), a schirmer's test, and lip biopsy...both of which were very positive.

Sjogren's is now something doctors are looking at and testing for more frequently.

My appointment with the gastro is still way off (to consult my bloated feeling), but I would want to throw this question to our experts, so I am prepared.... If ever the gastroenterologist gives me the "emptying test", does it have to be general anaesthesia or is it sedation? Is anaesthesia (whether general or sedation) a trigger to PN?

Further, as I mentioned in my other posts, my IGg/IGa Gliadin Antibodies and Transglutiminase are all negative. Would it be more productive/beneficial to request the doctor to see if I have villi atrophy, just to have confirmation (and closure) wether celiac/gluten is an issue in my PN. I know that it is common sense to have it confirmed, however, another side of my brain is debating if its worth it or am I opening myself to more risks? Do I make sense?

I believe that if you have a serious hiatal hernia, where the stomach moves up into the chest, you can have SOB then and it would go away, when the stomach moves back down. The stomach compresses the lung temporarily, and it feels strange and sometimes alarming.

I have a severe hiatal hernia, and I get weird feelings at times, and it sometimes even flutters. Gas makes it much worse.
Lying on my left side makes it better. This is not an every day thing, as a rule for me. I have a congenital defect in my GI tract where it is also twisted... makes for many uncomfortable events.

How is hiatal hernia diagnosed? What are the symptoms?

Thank you Mrs.D:hug:

I had an upper GI barium swallow. Once the doctor saw what I have--the twisted stomach and all the rest--
He had me lie on my RIGHT side and drink more, and could then watch the stuff reflux even.

My own internist said only about 5% of Xray studies actually show the reflux this way, and it was probably because my stomach was twisted as well. I have my pylorus (the end part of the stomach twisted 90 degrees and emptying in my back.

Hiatal hernias can come from frequent vomiting...which I had as a child, or mine may be part of the birth defect. They don't really know in my case. But hiatal hernias do tend to be somewhat common. Getting up, changing position, lying on my left side, having hubby rub my back, will all minimize discomfort when it happens. I really can't eat large amounts of food either, like at holidays. Avoid chocolate, and high fat meals, as this tends to slow stomach emptying. Coffee is completely out of my life too.

However, I've learned to control things so the vomiting is not common anymore. But when I was younger... my "spells" were very alarming and uncomfortable. GAS is my enemy. I avoid
carbonated drinks, and cabbage and most beans because of it.
Sometimes I use simethecone to break it up. Since using Kefir,
the gas problem is less. The probiotics in it seem to help with it.

Just to clarify. The empty test requires NO sedation of any kind. You eat a small amount of scrambled eggs with contrast mixed in, then lay very still on a table (on your back) for the next 2-3 hours. They usually have a TV set up right over head to you can pass the time easier. Other then being bored and the table is hard like an xray table, the test is a piece of cake.

ugh... I could NEVER lie on my back for 3 hrs! My GI tract won't move in that position. oh ick! makes me ill to think of it. :o

I am now on Kefir for 2 months. I am not sure if it does anything for me. But, I just keep on doing whatever is good to encourage emptying. Oh, gas is also a problem to me but it doesnt bother me much because it happens most of the times at home.

I hope that gastro will give me the tests to see whether I empty or not, or if I have villi atrophy.

Ihope the anaesthesia is not a threat or a trigger to the nerves.

Re: anaesthesia
 

Barrium swallow, does not sedate. However if you have an endoscopy, to take a small camera and look down your throat, and perhaps biopsy, then they do sedate you. It depends on the test. don't hesitate to look up any tests that your doctor wants to do, and ask him about the NP too. ginnie

Sorry for the details, but can you have a pillow? I feel extremely dizzy when I I dont have any pillow, particularly on a hard surface.

Its very good to know that this test does not require any sedation.

What does NP stand for?

Can anaesthesia be trigger or further damage the nerves?

Thank you.

Yes, you can have a pillow. They try to make it as comfortable as possible...the worst was that time just crawls.

Thank you so much en bloc.

opps backwards
 

As usual I say things backwards, kind of funny. I do this in speech as well, and occasionally speak two words at the same time. PN. not NP. sometimes I do wonder about my mind! ginnie

Re: on Tests
 

I do not know if PN can be made worse by the test, but I don't think so. Sedations would be another issue if you ever had to have it. Pillow, and maybe IPOD with a book on tape will make time pass quickly too. Not sure I could stay and watch some boring TV show. If it was Nova or discovery, well that would hold my interest. Maybe they have DVD that you could bring your own to watch. just a thought. ginnie

That is completely fine. That happens frequently to me now.... my memory has become so bad. sometimes I am totally lost of words. most of the times, my husband will finish the sentence for me, and that is alright. he takes the cue when to subtly complete my sentence.... another example of my memory lapses - i put a cup in the microwave just with the tea bag but without water! My family, friends, and previous co-workers used to consider me as a walking filing cabinet because I memorize every single details, but now, that is gone....sometimes I am frustrated but with all the more serious problems I have with the pain, memory lapse is a lesser evil.

I have been suffering with idiopathic small and large fiber neuropathy for 4 years. I personally have been worked up and tested by 4 different and capable neurologists. Had every test possible.
Every person with this condition is a little different. I have been on zneurontin - Lyrica - Vimpat - Trilipal, all for a significant amount of time. None of them helped my pain.

On the positive note, I suggest that your husband see at least one neurologist and follow directions. He must try everything possible to get the correct diagnosis. Keep active as much as possible.