Living with Autonomic Neuropathy

Autonomic Neuropathy Symptoms

As a result of a progressive polyneuropathy known as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) I have lived with autonomic neuropathy symptoms for over 5 decades. There are a number of unavoidable issues when dealing with the symptoms of autonomic neuropathy many of which are covered in Dr. Norman Latov’s book Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop, 

Autonomic neuropathy is a result of damage to the autonomic nerves which control your involutary body functions that keep you alive. These functions include the cardiac cycle (heart beat), pulmonary systems (breathing), bladder function, and digestion. It also affects the body’s ability to regulate temperature, tearing, sexual functions, blood pressure, saliva production, and swallowing among other body systems that function automatically.

In the process of dealing with autonomic neuropathy symptoms for more than half my life I have developed the most affective ways for me, personally to deal with some of the symptoms of autonomic neuropathy.

Autonomic Neuropathy Symptoms and How to Treat Them

It is important when considering the following suggestions, you discuss them first with your own primary care doctor. That being said, and having dealt with each of the symptoms below, here are some practical ideas which have worked best for me in dealing with my autonomic neuropathy symptoms:

Rule #1: From Dr. Latov’s book, “Do not OVER treat your autonomic neuropathy symptoms.” This is great advice when dealing with alternating diarrhea and constipation while trying to find a balance.  (Books on Peripheral Neuropathy)

Diarrhea – Simple advice eat smaller and more frequent meals with lower fat and carbohydrates helps. Of course doing what your mother taught you, drink lots of fluid especially coke in moderation, eat bananas, while increasing intake of salads are all natural approaches that work. There are some medications that your doctor may prescribe, but from my experience in using these medications you may end up with the opposite of diarrhea, so it is often best to try the natural ideas first. Note: A natural approach to resolving diarrhea due to autonomic neuropathy will work for most patients but in all things it is best to speak to your treating doctor.

Constipation – Simple advice drink lots of fluids, especially coffee with caffeine, eat prunes in moderation, while increasing your intake of salads are all practical ideas that work. Dr. Latov adds that taking stimulating laxatives are usually ineffective and cause increased cramping and diarrhea, but for some patients doctors may prescribe stool softeners. Note: A natural approach to resolving constipation due to autonomic neuropathy will work for most patients but in all things it is best to speak to your treating doctor.

Bladder Dysfunction – which according to neurologists I have spoken with can involve overflow incontinence or difficulty in urinating at all, decreased sensation, reduced urine flow, incomplete bladder emptying with retention of urine, over distention because what is damaged is the nerve that controls the motor and sensory muscle that allows the bladder to function normally.

Overflow incontinence –  I have found that frequent voiding is important to reduce accidents. The use of depends/pads works to avoid the embarrassing accidents that do occur. For males you will find that doctors will always want to check the prostate as the symptoms of your condition mimic problems with the prostate. You will find that some doctors will want to attribute the symptoms to aging if you are over 60 except some of us have had these symptoms when we were 32, myself after exposure to Agent Orange in 1968. I even had pain on urination which finally went away as damage to the nerves increased and I was now ‘numb’ from the waist down.

Then the bad news that was good news.  The pain returned temporarily after months on gamma-globulin infusions, indicating according to my neurologist that the damaged nerves where attempting to work again. This experience coincided with the severity of overflow incontinence decreasing significantly on IVIg!  Note: There are aids (depends, exercises, and medication) to help with overflow incontinence due to autonomic neuropathy and gamma globulin has reduced overflow incontinence significantly by protecting the damaged sensory and motor nerves, but in all things it is best to speak to your treating doctor.

Retention Problems – it is important that all attempts to empty the bladder be tried, like exerting local pressure, but some patients must use self-catheterization to prevent infections from this retention. In all these issues it is important to work closely with your medical doctor. Dr. Latov has other information and medication that can be used in his book on page 81. Note: Working with a knowledgeable doctor who is familiar with treating autonomic neuropathy is important in resolving retention problems and to prevent dangerous infections, but in all things it is best to speak to your treating doctor.

Loss of Sexual Sensations, (and normal responses of the sexual systems in both males and females) – Emotionally and physically, this is perhaps one of the most devastating results of damage to the Autonomic Nervous system.  I do not have to explain to anyone how this impacts on your life and the life of your partner.  It takes away life and living at the deepest physical and emotional levels.  The most important aspect is for you to understand that this is NOT your fault and there is nothing you or your partner have done to cause this to happen.  This may not help with the ability to enjoy  a major function of the human body, but knowing this provides understanding and stops the guilt or blame and perhaps one can stop beating on each other or themselves as if they or their partner is to blame.  No it is damage caused by the herbicides. Creativity in finding ways to express sexual needs with your partner is important once you get beyond the damaging blame game.  It is what it is until it is not, is a good attitude as you find creative loving ways to bring sexual joy to the one you love.

Arrhythmia or Silent Tachycardia – over the years sent me to the cardiologist so many times I lost count. Numerous times I was told that I was having a heart attack, which was checked out, rushed to the hospital tested, retested, had heart catheterization, was put on and off medications, then told my heart was fine.  The doctors even implied that I was the cause of all this testing when the doctors were the ones sending me for the testing!  The strange thing about this symptom was that it was silent or I never felt the tachycardia. Doctors would ask “Do you feel what your heart is doing?” The answer was “No.” For me these episodes came and went and did not kill me and with IVIg they stopped completely. Note: It is not the heart, but the damaged nerves supplying the heart and muscles surrounding the chest in a autonomic polyneuropathy, but in all things it is best to speak to your treating doctor.

Chest Pains – Then there were the chest pains in the top left center of my chest that resolved with gamma globulin and whether they were related to muscle spasms or heart I have no idea. Without gamma globulin the chest pains and tachycardia return along with severe muscle spasms in the chest and upper back with pain so severe ( level 8 ) that it would bring me to my knees (doubled over on the ground) and squeeze my chest making breathing difficult. In 1978 I believe it was, I was rushed from Weirhof, Germany to the military hospital and the diagnosis was ‘hyperventilation’ when there were no signs pointing to such a diagnosis. Knowledge of the symptoms of autonomic neuropathy just did not exist and even today it is underdiagnosed according to an expert Dr. Brannagan of Columbia University.  Note: All indications are gamma globulin resolved chest pains, muscle spasms and tachycardia associated with autonomic neuropathy, but in all things it is best to speak to your treating doctor.

Breathing – After years of this experience, I was finally told that with my breathing problems, it was important we make sure that the right side of the heart is not damaged, especially by the sleep apnea which had been present for years. This condition after a sleep study confirmed, is treated with a BIPAP machine which is a life saver as I will stop breathing at night in deep sleep. It does not matter if the doctors understand that this may be a part of your experience with autonomic neuropathy.  Either way, it is treated the same, with a BIPAP.  The other issue I learned is that my lungs are smaller than normal and that does not help.  If you are over weight to any degree, lose the weight as this pressure on your lungs does not help your situation.   Note: If you have autonomic neuropathy be tested for sleep apnea and especially so if you are awaken with severe headaches, but in all things it is best to speak to your treating doctor.

Orthostatic Hypertension (or for me a generalized spinning sensation) – For decades I have had the on and off sensation of spinning. This symptom over the years increased to the point by 2004, of a 24/7 experience of the worse seasickness one could experience. Nothing helped as this symptom continued day and night, standing or sitting or lying down. Doctors stared at me and prescribed nothing. Today I carry medication from my current doctor to help if this happens. In 2004 a neurologist explained that there are peripheral nerves in the inner ear and if one side is affected by my illness or the infusion of gamma that this would cause and then tend to modulate this symptom. After eight years with gamma globulin, this symptom is reduced from a level 9 to a level 1 to 3 with only occasional severe bouts. Today, the doctors gave me a script for Meclizine which is a blessing.  Without gamma globulin the violent 24/7 symptom returns to a level 9 and living becomes impossible. Note: Gamma globulin reduces the generalized spinning sensation of autonomic neuropathy, but in all things it is best to speak to your treating doctor if this symptom continues.

References:

One of the best patient and doctor article on the scope of dealing with autonomic neuropathy symptoms was published in 2000. To read this article  request a copy from gene@neuropathysupportnetwork.org.   This newsletter has three articles by patients or doctors: “A Twenty-Five Year Medical Nightmare”; “Diagnosis and Treatment”; and “Living with Autonomic Neuropathy”.

One of the best resources to find patient information and doctors on Autonomic Neuropathy is at the American Autonomic Society

Also see Autonomic Nervous System Merck Manual.

Note: This article on Autonomic Neuropathy Symptoms, updadted Nov 13th 2016, was originally published in Nov 2012

About the Author

LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Col Richardson has suffered with severe neuropathy for over 45 years. A 27 year military veteran and veteran of the Vietnam War, he was diagnosed with a progressive chronic peripheral neuropathy resulting in severe disability. This diagnosis has been confirmed as due to exposure to Agent Orange. It was not until 2010, 42 years after his exposure to Agent Orange, that his diagnosis was recognized by Veterans Affairs as service connected.

Author Archive Page

21 Comments

  1. I am a Viet Nam veteran and was exposed to agent orange and I need to know if that exposure could have caused autonomic neuropathy?

    Thanks,

    Woodrow Lewis

    1. Yes. The VA is about to recognize CHRONIC forms of Peripheral Neuropathy as presumptively due to exposure to Agent Orange. We are waiting for the official announcement so that we may post our new GUIDELINES in submitting a claim. IF you have not already done so, to to the NSN TODAY tab and read the articles under the topic Agent Orange. Then go to the VETERANS/AGENT ORANGE tab and read this information. This information will be updated soon with the new guidelones. If you have not done so already, order your free DVD at the ORDER DVD tab. Also look at the NSN TODAY tab under Why IVIg as this tells you that Chronic Inflammatory Demyelinating Polyneuropathy CIDP or Chronic Anxonal Neuropathy and within these diseases, Autonomic Neuropathy the symptoms are effectively reduced with this infusion and it helps prevent further damage to the nerves. I have been getting these infusions since 2004 and it has saved my life as the autonomic neuropathy affects my breathing. I am currently 100% disabled due to CIDP by the VA after fighting them for over six years. Col Gene

  2. Autonomic neuropathy affects the autonomic neurons of either or both of the parasympathetic and sympathetic nervous systems.

    1. Saba: Autonomic Neuropathy refers to the internal body systems such as digestion, the urinary system, the system that allows us to sweat to cool the body, blood pressure, heart rate and even hearing and eye sight and so forth. Symptoms of tingling would refer to the large or small fiber nerves when damaged or are being damaged that make up the Peripheral Nervous System. So this sensation due to damaged nerves is outside the Autonomic Nervous System noted above. Tingling is however a symptoms of peripheral neuropathy. I will send more information by E mail.

  3. gene, ive been following your articles for a month now. thank you for the wonderful work you have done. i am a veteran with the oklahoma city va and am needing guidance on pushing to get ivig treatment. i have small and large fiber damage (sfn by skin biopsy and very bottom low number of low normal on sweat gland of the skin biopsy), no response on sural nerve, ulnar probable conduction block, p.o.t.s, orthostatic hypotension, autonomic neuropathy and positive rombergs sway. all started 12yrs ago with mild shingles no blister outbreak under right shoulder. went away then 1.5 weeks later possible spread to spinal cord down to tailbone with rash no blisters covering complete waist and down bilateral extremeties not similar to shingles rash tho more like gbs. anyway heart rate and bp fluctuations are getting so severe and erractic ex: 129/108 hr:144, to 67/44 hr:60. ive been taken to the local er twice in the last 5 days. the last 2 months im declining so bad and am basically become couched bound. the va as im sure you know is in no rush. we are considering going to the va er tho we live 1.5hours away yet im afraid they will do the same as tbe er here put me in a bed monitor me see my vitals return to low normal because im supline and send me home. any suggestions/advice to get correct treatment now not sure how much more my interal organs can take of this roller coaster. thanks

  4. In the beginning I heard you mention this but haven’t heard anything else I have a temperature problem with my body I get very cold and very hot and very cold and very hot I do not know how to handle this my feet are constantly Frozen and the top part of me is constantly sweating you have any ideas on how to control this please respond thank you so much

    1. Mary Ann: This is a sign of autonomic neuropathy. However there could be other causes for this condition. The autonomic nervous system controls temperature and sweating. Lack of sweating in the lower body with compensation of heavy sweating in the upper body are common signs. Our experts believe this is a sign of an immune mediated neuropathy treatable with IVIg, but only a neurologist can provide such a diagnosis. We will send more information in a separate E mail.

  5. Lt.Col Richardson, first of all thank you for serving in the service and all that you have done. Secondly, thank you for the wonderful information.
    I have recently been diagnosed with the Autonomic Neuropathy. I am 43 years old and have been dealing with symptoms for about 4 years now.
    I have had (3) cardiac Ablations and now have a pacemaker. I am on Oxygen 24/7, and have had as many as 20-30 TIA’s over the last (4) years.
    Along with prostate issues now… I have kidney disease.
    I find myself often tired and drained. The biggest issue I struggle with is having (7) wonderful kids and from the ages of 22-4 years old. The Dr’s have told me that anything can happen at anytime.
    My question for you is do you know what the average life expectancy form this disease is?? And do you have any advice on how to beat it?!
    I have learn to love life more and not allow it to beat me down but somedays are worse than others. I am not sure how to help my sweet wife and kids to understand what I am going through. Do you have any advice for that as well?
    Thanks again for all you did for our country and continue to do for us.

    Respectfully,
    Wayne

    1. Wayne: Under most circumstances, a person will die with Neuropathy, rather than from it. That is not to discount the horrible effect it has on lives and productivity. The exception is with GBS that can come on very suddenly and be deadly in some people because of its rapid development and possible effect on breathing and other symptoms that require hospitalization. However even in this instance, with good quick diagnosis and treatment, most patients now days survive the frightening experience. The key in GBS is quick diagnosis and treatment by experts. If you have had neuropathy for more than two months or so, you do not have GBS but a chronic version such as CIDP or other types, according to most experts. We will send you a DVD that will help you and family understand what is happening and some ideas on coping but we need your mailing address to do this for you. Chronic illness drains us of energy and as you say that is one of the most difficult problems to deal with in many chronic illnesses. Will respond with E mail. God bless.

  6. Lt.Col Richardson – I thank you for your service; you have done what I could never do and it is so appreciated. I recently saw your video and cried through the entire thing as it was the first time I felt like someone understood what I am living. For years doctors told me I was simply anxious and needed therapy each time I went to the ER for tachycardia and blood pressures over 210/110. It has been a tough journey for the past three years since I had what they believe was transverse myelitis and resulting autonomic neuropathy. To complicate things further, I have a spinal syrinx which may be the cause, or just a major contributing factor to my many symptoms. I fight every day to stay positive, but the pain is overwhelming. Recently, I am having increasing scalp pain that is overbearing (I have full body neuropathy pain). My neurologist wants to try IVIG but I’m apprehensive. My biggest concern is that it will make the problem worse. What can you tell me about the side effects?

  7. Thank you Gene…. You are a big help to many of us. I appreciate it. Are you familiar with CMT? And if so, is it akin to PN? Is one caused by the other, etc.? Thank you, Willie Makeit in Texas

  8. Mr. Gene;
    Once again your wisdom has helped me to better understand this nasty disease. Your ounces over the years has helped me get past one Doctor trying to get me a walker as his only solution the ever increasing instability in my gate and failing balance while yet another Neurologist claims he doesn’t think that have “full blown” CIDP at all!!!! I have always attributed my bladders infections a result of breaking my back 20 years at L4 thru L5 and S1. But every time I get online with the network (and you ) I find that probably all of my symptoms relate right back to Autonomic Neuropathy and CIDP. I have not tried IVIG treatments yet because my regular physician and my new Neurologist feel that it will not solve any of my problems! I live in the town just North of you as you know and I am finding it increasingly difficult to live with this disease ( and the other two, severe type II diabetes, and Ankylosing Spondylitis). I am sincerely wondering if a trip to the Mayo Clinic with prove useful? I’m 68 years old now and the pain, incessant sweating, bladder problems, and now a slipped disc in broken back, and the only time I feel hopeful any more is when I read your articles and reports. My family doctors are doing everything they can but, they really didn’t know what CIDP was until I brought it up several years ago. Does Medicare pay for IVIG treatments and is there any one in Florida that you can recommend me to contact here to further pursue that line of treatment. Once again my friend, any suggestions would be greatly appreciated. As always, God Bless you and the entire Neuropathy Support Network for all that you do, and thank you for your service to our great country, and most importantly, GOD BLESS YOU, YOUR FAMILY, AND THE ENTIRE NEUROPATHY SUPPORT NETWORK !!!!!!!! Hope we get to chat soon!
    Mike Secor, General Contractor

    1. Dr. Ramkissoon in Sebring is a Board Certified Neurologist and he ordered IVIg for me. Not sure if you have worked with him or not. The difficulty in Sebring is getting the hospitals to administer it. One option is to have HOME INFUSION. One company that does this is Bio-Script phone 800 273 5599. IF you are interested I can recommend a home infusion service. They also will often disregard the co pay if you qualify. The other option is to travel where you can get it at a hospital infusion room at least for the first time or more until you see how you do. There have been doctors who will do IVIg for diabetic neuropathy especially if it progresses to CIDP and Autonomic Neuropathy as it will help with both. Not sure you have read the articles I wrote on IVIg but here is the link: https://www.neuropathyjournal.org/category/why-ivig/ . The other options are to travel to Tampa or somewhere else for the script if Dr. Ramkissoon will not give it. And yes Medicare will pay for IVIg but then there is a co pay that you may have to cover if you get it in a hospital. Let me know.

  9. Really appreciate your article because I’ve been suffering with what my doctors think is an autoimmune disease. I have small fiber neuropathy issues on my left side with tunneled vision, severe brain fog/confusion , syncope, and heart palpitations.
    Would you know if this could be apart of autonomic neuropathy?

  10. Hi, I think I have peripheral and autonomic neuropathy and I am 50 yrs old. It started with my feet over a week ago and now it is my whole body. I thought originally my lower back was bothering me and went to my chiropractor who seemed to help my feet a but. The most troubling thing for me right now is my stomach. I am nauseous and can’t eat. I have a severely dry mouth and indigestion. I haven’t seen my doctor yet because it is Christmas and my stomach just started a few days ago. What can they give me for my stomach? Does the medicines they prescribe for general neuropathy help the stomach too? Thank you so much. I can’t live like this.

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