Today's very personal post comes from wenatcheeworld.com (see link below) and is one man's view of his life living with HIV and including neuropathy as one of the by-products. It shows that for many people, it's not just a question of taking a number of pills every day and living nomally but sometimes a real struggle to deal with both the side effects of the medication and the diseases that HIV can bring on. His final sentence shows a strength of mind that is an example to us all.
HIV-infected Wenatchee man stays optimistic despite many obstacles
By Dee Riggs World staff writer Saturday, November 19, 2011
WENATCHEE — HIV disease and its life-saving medications have taken a toll on Dan.
The 51-year-old Wenatchee man is gaunt in the face and is constantly scratching his arms and upper body. The itching is a side effect of one of the antiretroviral medications he takes to keep HIV at bay.
The medication also makes him extremely tired and gives him daily diarrhea. He also has memory problems, peripheral neuropathy and bipolar disorder. He thinks the latter is the result of either the HIV or the many medications he’s on, not only for the disease itself but to combat side effects of the HIV medications.
Adding to his troubles: He’s suffered bouts of pneumonia and sinus infections that are too numerous to count.
“With HIV, you can age real quick,” said Dan.
Dan is one of the 120 people in Chelan, Douglas, Okanogan and Grant counties being treated by Dr. Brent Barber, who handles infectious diseases at the Wenatchee Valley Medical Center.
The first case of HIV was reported in Washington state in 1982, and the first cases in Wenatchee were about the same time.
Dan was diagnosed in 1985, while living in St. Paul, Minn. He said doctors there determined that he was probably infected in 1981 or 1982.
The sigma of the disease, he said, has lessened, but hasn’t gone away. That’s why he didn’t want his last name used.
“There are people out there with radical views and I’m not going to wave a flag to them,” he said. “I have no desire to be a martyr.”
Dan, who moved to Wenatchee in 1989, said he learned that lesson in 1991. Shortly after he told a few acquaintances that he had the disease, he was assaulted by three men while walking across the Columbia River pedestrian bridge. The assault sent him to the hospital with head injuries.
Before his HIV diagnosis, Dan said, he was a certified medical assistant. He was a healthy guy, he said, and he was “driving a gold Cadillac Coupe de Ville and living in St. Paul in a nice place.”
Today, Dan lives in a small rental home in South Wenatchee with his two pitbull terriers, Mya and Apollo. He survives on Social Security disability and Medicaid.
He spends his days, he said, “close to the restroom” with diarrhea and, sometimes, vomiting. He also must nap to recover his strength. When he’s feeling up to it, he walks his dogs.
Dan calls himself bisexual and said doctors traced his disease to a time in his life when he was having multiple sex partners. “I was very promiscuous in my youth,” he said.
Dan called the ‘80s “a rough time. .... I went to five funerals in seven years.” Those were funerals of friends who died from HIV disease.
Dan thinks he didn’t die because he has a strong constitution and, before he got sick, he was very athletic.
In St. Paul, because of its proximity to the Mayo Clinic, Dan said he got excellent medical care, and did not experience prejudice among health-care workers. He also did not suffer ostracism from his family.
“My parents were very open and loving,” he said. “I got this disease from homosexual sex. I had fought being gay for several years, then my parents sat me down and said, ‘We love you and it’s OK with us.”
Ostracism came, however, from others in the gay community.
“I went from being a fun figure in the community to being an outcast,” he said.
He attributes the ostracism to fear from others of contracting the disease. He said that ostracism has lessened over the years as people have realized the importance of using protection during sex.
He said he has experienced some discrimination from people in the straight community, mostly from older people who did not grow up with the disease in their midst. He notes that radicals in church communities have been the most hurtful while caring church communities have been the most helpful.
“Churches have been some of the best people behind me,” he said. “They put me up in motel rooms those times when I was too sick to live in my car.”
After his diagnosis, Dan said, he tried to continue working but frequent illnesses kept him out of the workforce and burned up his savings. He came to Wenatchee to work as a picker in the orchards.
Dan said he has strong feelings for people who call HIV-infected people sinners.
“AIDS is not an abomination sent to kill faggots,” he said. “Otherwise, we wouldn’t have 20 million children dying of it in Africa. People should stop hating people with AIDS because you’re hating children too.”
Dan said he feels fairly safe in Wenatchee today, compared with the early days in St. Paul.
“I remember when I would walk up one-way streets, just to make sure no one was following me,” he said. “I was living with fear and paranoia. I don’t have that kind of fear anymore; people are much more accepting. AIDS is an everyday word today — it’s in everybody’s language.”
His biggest fears are medical. “I worry about my lungs, getting pneumonia; that, and losing my ability to think and to reason.”
Still, he battles on. Dan, who calls himself an optimist, said he’s currently on five to six of medications and, despite the side effects, feels fortunate to have the drugs because they are keeping him alive.
He offers this advice for others suffering from HIV disease: “Don’t ever give up. When they tell you you’re going to die, don’t roll over and die; just fight that much harder, and love life every day.”
http://www.wenatcheeworld.com/news/2011/nov/19/hiv-infected-wenatchee-man-stays-optimistic/
Today's post from painhq.org (see link below) is a personal story of an older man living with severe neuropathy. It's truthful, painful to read and recognisable to anyone living with neuropathy for any length of time and also inspiring in that this man doesn't give up but tries to find the best way to live with nerve damage that he can. He admits he's no saint but for once this is a no-bullshit story of what it's like to go through the years with neuropathy. There are no miracle cures (he found some benefit from gabapentin but this doesn't apply to everybody) and no clichéd answers to the problems neuropathy brings but you won't be bored reading his tale.
I am 72 years old and live alone in a single family bungalow in Peterborough. I eat too much, drink too much, and get too little exercise. I am a retired teacher and have lived alone since my wife died in 2000. I am a fat old fart who lives a fairly circumscribed life - only partly due to my neuropathy. Right now my sciatica is flaring up and is far more debilitating.
My peripheral neuropathy likely dates back to the early to mid ‘90s. I suffered from falling arches, and for some time I ascribed my foot and leg discomfort solely to that issue. It was only in 1997, when the numbness, burning, and occasional stabbing pain was keeping me awake, that I took the problem to my GP.
It is so long ago that I have little or no recollection of the original process of diagnosis. The story is complicated in my mind by my wife suffering a massive brain injury at that time. She was in an automobile accident in Ottawa, in the summer of 1996. She was in an Ottawa hospital until the spring of 1997, and again for several more visits during the next couple of years. She lived at home until her death in January, 2000. Naturally, at the time, my minor problem was peripheral to hers. It was while she was in the hospital (1996 – ’97) that the burning and tingling got so bad that I went to see my GP. He referred me to a local neurologist who ran some tests and diagnosed peripheral neuropathy. By that time (1998 – ’99) the loss of feeling extended almost to my knees.
The neurologist had no answer as to the origin of the condition. I had been drinking heavily earlier in my life, but had been totally dry for ten years when the condition struck. My GP (at the time) in 1997-9 was convinced that I had diabetes. My blood sugar levels were consistently close to the threshold levels, so he took that leap and declared me diabetic; controlling it with diet and exercise. It wasn’t until my present GP had me do a glucose test (in 2009) that the diabetes diagnosis was ruled out.
At the beginning I had “pins and needles”, burning on the soles of my feet, numbness or loss of feeling in my feet and lower legs, aching feet and legs (perhaps partly due to the falling arches) and occasional shooting pains or a feeling like a weak electric shock. I do not remember the specifics, but I am sure that the discomfort started in one foot at a time before it came to affect both feet and legs. I have a vague memory of it migrating from one foot to the other over the months.
Finding relief, also known as, gabapentin
Back in 1997 or ‘98 my GP prescribed a common medication used off-licence to treat nerve pain. I have no recollection of which one it was. I just remember him saying that no medication worked for any large percentage of the sufferers, but that particular one was the most efficacious. It might have been an anti-depressant, but the specifics escape me. I just remember that I got every side-effect listed on the fact sheet (dry mouth is one I remember), but it did nothing to ease my nerve pain.
The second medication he prescribed was gabapentin. It was a miracle cure. Within a few days the worst of the symptoms had eased, and after trying different dosages we settled on just 300mg per day. Over the years, I have had to increase the dosage as the pains and discomfort returned. I have never been free of the feeling that something in my feet and legs isn’t right. There is the constant numbness, the decrease in flexibility, and the fairly common occasional tingling sensation. It isn’t pain! For many years, the discomfort was almost forgettable as I went through my daily chores. I loaded my gabapentin into the evening to reduce any chance of pains that would get in the way of my sleep. I don’t think that I ever expected to avoid all of the discomfort of numbness and a bit of tingling. I was happy as long as I could get to sleep every night. I have never suffered from any side-effects related to the gabapentin; or none that I identified.
Currently, I am taking 1500mg of gabapentin daily. It has been my only medication since the late ‘90s, and the only change has been a gradual increase in the dosage over the past 15 or 16 years. I am told that I could probably take and tolerate higher doses and that some patients do take more than my dose.
Life with numbness
From the 1990s, I recognized that I was losing my sense of balance. I avoid ladders. I am far more sedentary than I was in middle age. I rarely travel and, if so, prefer to use my car. At present, I avoid activities which require much walking and standing. I do my own housework (such as it is), but hire people to look after the outside chores. At home, I spend far too much time sitting at the computer – as I am now! I assume that some of the inactivity and lethargy is a result of becoming a fat old fart. I stopped mowing my own lawn over 10 years ago lest I stumble on the uneven surface. For exercise, I walk on a treadmill rather than the sidewalk, as I fear tripping on the uneven surface. For a couple of years before I got a treadmill, I used to walk at 4:00 or 5:00 AM so that I could walk on the residential street which was smoother than the sidewalk.
As some of my foot muscles become dominant and others atrophy, walking becomes more problematic. I drag my heels and walk flat-footed. My feet are no longer flexible, so I describe the sensation as akin to walking with snowshoes. My feet and legs feel “heavy”. It is very tiring. I can’t walk nearly as fast, or as far as I used to. Much beyond a mile is getting to be a trial: not impossible, but not comfortable. My legs ache after any decent walk on my treadmill. Hiking or walking off road is almost impossible. An extended shopping trip can be problematic. Luckily, I detest shopping.
I can feel movement on my skin if a finger is rubbed across my foot or leg, but if touched gently without disturbing the hairs, I often can’t tell if my foot or leg is being touched at all. If I am poked I get no different sensation from a finger than from a needle. Some nerves seem to still work as occasionally I get a sharp pain from stubbing a toe, but most times my only clue that I have stubbed it is the blood welling out from under the nail.
For the past 2 or 3 years I have been noticing a gradual loss of sensation in my fingers. It is just the same numbness and tingling that affects my feet, but less severe as yet. As I do all my own cooking it presents the constant threat of burned fingers. I cook most of my food from fresh ingredients, so I find that my legs often get tired and achy from standing too long in the kitchen preparing vegetables or batch-cooking for my freezer. Perhaps it is the muscle changes in my feet and legs which cause me the most problem; not the occasional bout of neuropathy pain.
My physiotherapist comments that I have retained strength in my arms and legs, but I notice a lack of strength in my hands and a sensitivity in the skin which keeps me from opening jars or bottles. It can hurt to try to grasp an object too tightly. Accidentally hitting my hand on a piece of furniture or door jamb is often remarkably painful; far more so than used to be the case. I am more likely to drop a light object as I no longer sense, say, a sheet of paper in my hand. Simple tasks, such as doing up small buttons, becomes nearly impossible. My wardrobe reflects that new reality; few shirts with buttons and no tight collars. I struggled mightily to rewire a lamp the other day. My fingers were like useless - and senseless - lumps of clay. It is hard to manipulate thin wire with no sense of touch. Picking up small objects is a trial.
My days entail reading the newspaper, normal ablutions, essentials of housework (dusting is avoided at all costs), email contact with a couple of dozen people, internet surfing, walking on my treadmill or doing stretching exercises, watching videos from my PVR or streamed to my TV through my computer, football and occasional soccer matches watched live, daily food preparation, grocery shopping 2 or 3 times a week, occasional appointments and lunches with friends, usually weekly contests over a friend’s snooker table, weekly visits by a female friend. I drive to see my children and grandchildren every few weeks. I have pretty well ceased attending plays and concerts except for the occasional MET in HD performance. That is more due to the lack of a companion rather than the effects of my neuropathy. I have ceased travelling because of my inertia, and mostly the lack of a suitable travel companion. Neuropathy wouldn’t keep me at home were I really keen to take a particular trip. It would just affect the type of trip and the day’s activities – as it does at home. My inertia is only partly the result of my neuropathy.
What pain is like now
I have used gabapentin alone for over 15 years. I have never tried any other medication. I asked my GP about newer and better medications a year or so ago. He said I should stay with what is working rather than weaning me off it and then going through the process of trying to find something better. I was somewhat relieved.
All in all, I view myself as being rather lucky. I found gabapentin pretty early in the process and under normal conditions I can say that I am pain-free. I have discomfort, and my life is circumscribed, but I do not have the constant level of pain common to some sufferers.
My advice for anyone newly diagnosed with neuropathic pain?
Seek out whatever medication will render the nerve pain bearable. Once you can limit the pain, everything else is reduced to the level of a really annoying nuisance.
Forget vanity and wear sensible shoes with proper orthotic support to keep you mobile. Work with a physiotherapist to develop a regimen of stretching exercises to help keep you as flexible as possible.
Understand that you will have a constant struggle to maintain as much of your lifestyle as possible, to work around your new limitations, and to seek out any treatments or devices which will make life a bit easier.
It isn’t a death sentence so much as a constant set of hurdles which will make life a bit more difficult, but still enjoyable. It’s no walk in the park, but look around at your peers and all of a sudden neuropathy isn’t so bad. There are lots worse conditions to have to cope with.
https://www.painhq.org/connect/personal-stories/detail/life-with-neuropathy
Wednesday's storiesTwo short stories today, both from the USA where they certainly suffer more from the ripple effects of neuropathy than in countries where there is a social safety net. Sometimes posts need no further comment from me.
Gerald' story
A Lack of Understanding Neuropathy has Changed My Life
I'm a 40 year-old man whose wife left him last year due to complications from neuropathy and her not understanding what I was going through. I lost my job, just one week before Christmas, from complications from this disease!
I'm aggravated with it! I've done all the testing and still don’t know why I have it! I'm currently on oxycodone and acetaminophen for the pain and have been for years. I go up and down on the daily doses, so they still help me about 20%, just enough to be able to function as a adult. The misconceptions about this drug alone are devastating to me because no one understands.
I have a long life to live still; but my neuropathy seems to get worse at all the wrong times, and not many people understand what I am experiencing. The main thing that has helped me the most is God, and, yes, I am a born-again Christian!
Thanks for allowing me to share a little bit of my story. I would like to share my whole story one day. Thank y'all!
http://www.neuropathy.org/site/News2?page=NewsArticle&id=7625
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Neurotyke's tale
Posted May 14th, 2011 at 1:03PM
I'm 29. I've been trying to deal with this crap since I was 21.
My "ideopathic" cause is more than likely trauma to the tendons in my ankles.
I was in the Navy, joined up to be in the Seabees.
The physical training for the Seabees was a lot like being a Marine, with a specialty in construction.
I'm a tough guy and stubborn as hell. I made it through basic Navy boot camp during a Chicago winter with strep throat, a chest cold and a severe ear infection. (No joke. A petty officer almost had to escort me to get checked out by a doctor. I didn't want to get held back in training.)
When it comes to pain, I can handle a lot of it.
Until my feet felt like the tendons were tearing away from the bone every time I ran.
I was medically discharged with bilateral Plantar Fascitis and Tibial Tendonitis. Service connected.
I thought that I'd get better and then be able to join back up and maybe be a deck hand instead.
Then my feet started burning at night and I thought my feet would explode from all the pressure building up.
You all can relate with the symptoms.
Medications: Nortryptolene, Gabapentin, and Tramadol.
Gabapentin's side-effects cost me my last job.
Jury's still out on the other two.
I'm planning on becoming a paralegal. Work my way up to a Soulless Corporate Lawyer.
I hereby refuse to let the ideopathic peripheral small fiber neuropathy ruin my life.
http://www.experienceproject.com/stories/Have-Small-Fiber-Peripheral-Neuropathy/1560374
Today's video appears on a long-running personal blog from diabetes-and-neuropathy.blogspot.nl (see link below) and is about Lee Nevitt and his life with diabetes and severe autonomic neuropathy. He has no connection to HIV but always tells the truth, warts and all, about his own personal experiences and difficulties. Many things in the clip will be recognisable to many people with neuropathy and for that reason alone it's well worth a watch. He's certainly doing his bit in widening knowledge of the disease and has to be commended for his honesty and courage in telling the world his story.http://diabetes-and-neuropathy.blogspot.nl/2010_08_15_archive.html
Today's post from neuropathyjournal.org (see link below) is both a personal account of living with autonomic neuropathy (where the body's involuntary functions are affected by nerve damage) and a useful series of tips as to how to improve the situation. Definitely worth a read if your 'ordinary' neuropathy has progressed to autonomic and is beginning to affect all areas of your life; something that can be alarming even for the best adjusted patients! The difficulty of course, is deciding which of your problems arise from the nerve damage and which are a result of getting older - serious discussions with your doctor or neurologist should help sort it out.
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS6
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.
https://neuropathyjournal.org/living-with-autonomic-neuropathy/
