“Living with Autonomic Neuropathy”

One of the best patient and doctor article on the scope of Autonomic Neuropathy 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”.

Also see Autonomic Nervous System Merck Manual.

Having lived with Autonomic Neuropathy for over 46 years as a component of a progressive polyneuropathy known as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and having been advised by my Neurologist, Dr. Waden Emery III and having read Dr. Norman Latov’s book Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop, a number of issues come to mind when dealing with the symptoms of Autonomic Neuropathy.

In looking at the various components of the autonomic nervous system which can be affected by autonomic neuropathy, these authorities note that it can and does affect the urinary, the cardiac (heart beat), digestive, pulmonary (breathing) systems, it also affects the body’s ability to regulate temperature, tearing, sexual functions, blood pressure, saliva production, swallowing among other body systems that function automatically.

In the process I have learned and confirmed what my Neurologist and Dr. Latov mentions in his book about responding to some of these symptoms.

Following are some of the things I have learned in living with some of the symptoms of autonomic neuropathy such as diarrhea, constipation, bladder dysfunction, loss of sexual sensations, arrhythmia or silent tachycardia and orthostatic hypertension or generalized spinning sensations.

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

It is important in looking at the following suggestions to work with your own primary care doctor. That being said, here is some practical ideas which in working with my neurologist, I have found or learned in living with my symptoms:

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

For diarrhea, simple advice like eating smaller 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. Point: 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.

For constipation, simple advice like drinking lots of fluids, especially coffee with caffeine, eating in moderation prunes, 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. Point: 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.

For 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.

For 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.  And doctors wonder why these veterans who have experienced this are angry.  Hello!

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!   Point: 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.

For 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. Point: 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. Point: 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.  Point: 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 that 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.   Point: 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.

Finally there is 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. Point: 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.