Recently diagnosed with Autonomic Neuropothy - what causes it?

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Hello everyone.  My name is Diane.  I was recently diagnosed with Autonomic Neuropothy.  From what I understand from the internet, common causes may be diabetes, alchohol use.  My neurologist said he has no clue what caused it, I am a red herring.  I am 53 years old and I have raging fatigue, I often sleep aboug 10-16 hours a day.  I have POTS and I am on medication to raise my blood pressure.  My lowest ws 85/46.  I don't get dizzy as often since I was put on Midodrine.

If you have Autonomic Neuropothy / dysfunction, do you know what the cause is in your case?

One of the things that the test report from the hospital mentioned was that many patients with Autonomic Neuropothy benefit from tanking Alpha Lipoic Acid, 600 mg a day.  My doctor told me to take 200 mg three times a day.  The supplement gave me a bad taste in my mouth and I also read on the internet that if you take medication for hypothyroidism (which I have), don't take Alpha Lipoic Acid - it inteferes with the medication.

I also have a new symptom, my hands tremor every day.  If I am holding a fork, a drink or a piece of paper, it is very visible.

From what I understand, people with Autonomic Neuropothy normally are seniors.  I am only 53.  

I would appreciate your sharing your experience and input.

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  • Posted

    My age is 29 right now. I am suffering from that when i was in 8th standard. Till now i am finding the reason. Please share your experience with me.
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  • Posted

    Hi Diane, I was diagnosed with Dysautonomia about five months ago. I just turned 50, but it does occur in younger people as well. In fact, as I understand it, Dysautonomia is a genetic condition, which is what it sounds like you have. Of course talk to your doctor about the diagnosis. I was diagnosed with Fibromyalgia and Chronic Fatigue about ten years ago, which go along with the condition. There are so many things that go along with Dysautonomia. The colegeue of the doctor I see wrote the Physicians manual on Dysautonomia, which his young child has. I'm in a study he is doing. It is all the vitamins in one which are supposed to be helpful for people with this condition. If you would like I can send you a pic of the bottle. It's not on the market yet but I have found it to be really helpful! If I can answer any questions you have, please let me know! I'll do my best!!!

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    • Posted

      Thank you kellyzboyz, I would appreciate it if you can help me with more information regarding the supplement trial.

      From what I understand, Dysautonomia is an umbrella term used to classify different forms of autonomic dysfunction.  I'm confused as to what the different types are.  My test just simply confirmed that I have autonomic neuropothy.  Yes, I have raging fatigue, but I don't see on the internet where it indicates that chronic fatigue is a possible symptom of autonomic neuropothy?  I am glad to have found this website so I can share and learn with other people that have experience with the same condition I have.

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    • Posted

      Hi Diane, trying to do this on my phone and three times I accidentally erased my message, UGH!!! I'll try to make this brief just because I'm so tired, what else is new!!! My two major problems that are really terrible 1) my fatigue 2) memory problems. Do you by any chance live in NJ? Probably not but thought I would ask anyway. I know some really wonderful doctors in this area and Philadelphia. So the supplement I take Vit D 1,000 IU...Vit. B6 25 mg...Bit. B12 550 mcg...Magnesium 100 mg...Alpha Lipoic Acid 200mg...Coenzyme Q10 100 mg. The bottle says take two as soon as you wake up and then two between breakfast and lunch and two between lunch and dinner. Be sure to take them on an empty stomach. Of course talk to your doctor before taking them just to get his/her ok! I have noticed an improvement in my energy level since I have been taking them! Anytime you would like to talk or just vent I would be happy to listen! Maybe we can figure this out together, lol. A book I have been told to read is The Dysautonomia Project, it explains autonomic disorders in layman's terms! Also, if you are on FB, there are support groups for people with Autonomic Disorders, the people in the group I belong to are very knowledgeable and everyone is so nice!!! Keep in Touch!

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  • Posted

    Hi

    I have Vasilvagus syncope, which, is autonomic dysfunction, a form of dysautonomia.   I was born with mine, and i am 57 now, so, i now feel that i have a certain amount of neropathy with it, although i do  recover, my illness is not considered progressive, but, It is causing in me, Chronic Fatigue Syndrome, due to the low blood pressure.  Low blood sugar, which, switches too a high reading, and slow dijestion, along with frequent blackout dizzy spells, i also lose weight with it, due to the stress symptoms it gives me.

    Operations can cause it, due to either damage to the nervous system, or, the shock and trauma to the body, and when i had an operation a year ago, it definately triggered my symptoms rather badly, so, be careful of that one, viruses will trigger it, stress, eating large carb meals, caffinated drinks, alcohol, smoking, period time.  Conditions that cause it, diabetes, problems with the immune system, which, is what i suspect is wrong with me, as, one daughter has Crohns, and the other daughter has psoriasis, both of which, can be immune related, also, there is a lot of asthma and diabetes in my family, so, i think the faulty gene in my family, is to do with the immune system.

    Neuropathy is not necessarily an elderly patient thing, but it can be, if, your diabetes is poorly controlled, or, you have had diabetes a long period of time, if you are not diabetic, then, this is not your cause, try and do it, by linking illnesses in the family, you may not, share the same illnesses as one another, but, what is causing those family illnesses, is the link. Certain other rarer illnesses can cause it, as well, and drug abuse. 

    To help your CFS symptoms, you need to drink, at least 2 litres of water per day, and take bottled water out with you, and when you come to a standstill, move from side to side, to avoid your blood pooling, and try wearing compression socks when you go to bed, which, also helps with blood pooling, get up slowly also can help.  Go to bed the same time every night, and get up at the same time every day, to avoid deconditioning with the CFS,  and be liberal with salt in your food, because, the reason we can also suffer with CFS, with this illness, is because, we lose blood volume, this is what causes you to pee like a racehorse, so, if this is you, you will dehydrate, and then lose your electrolytes, so, you need to drink water to avoid this, but also take in salt, without the salt, you will not retain the fluid you have drank.  When you do this, and you start to  feel well, what you will find is, when you  come to drink again, it wont work, as it was, or, worse, it will trigger your symptoms off, this is because you have over drunk, as this condition is all about balance, but what you cannot do,  is, maintain the wellbeing feeling, as,it is all about control, balance, and learning, how far to go with things, how much rest we take, how much stress, how much we eat, etc, etc,  because this illness is to do with the autonomic nervous system, so, you could say, our, own nervous system makes us ill,  things in the environment can also trigger it off,  we have no control over some of the things that are our triggers.   Shock, and,  trauma, is another, and that is why i was bad after my op, as it was the trauma and stress put on my nervous system, to make me well, the sight of blood can also do it, so, if you every find yourself, dizzy and sick after blood has been taken, then, that has triggered your dysautonomia condition,  certain meds will also trigger it, i couldnt take the birth control pill.  

    What causing us, in part, to black out, is, because blood pools as we stand, but in our case, because of how slow our heart goes, we do not get the blood back up quickly enough to our heart, then brain, and that is why, we go dizzy when we stand, or, get up.  Cut out as much carb foods as poss, and switch to decaf drinks, eat more protein, little and often is best, as if, your condition is affecting your dijestion, where you feel full as soon as you have eaten, as if food feels high up in your abdomen, then after a meal, you will need to lie flat for about 30 mins, by which time, it will have gone through, slow dijestion makes you feel full, and sick, and can cause constipation, and then IBS symptoms later on, so, eat little and often, if, you are working, then you wont be able to lie flat, but, if you are troubled with slow dijestion, then, the worst thing you could eat, is, bread, salads with protein, would be better, but, given salad is a carb, keep that down to a minimum.

    It is the vagus nerve in me that is either, damaged, or, malfunctioning, and the vagus nerve is responsible that, sends the messages, to the brain, that, control our, sugar level, dijestion, and blood pressure,  and whilst my illness is not progressive, or, so i have been told, it will get worse as i get older, and since i started the menopause from age 47, this is when things got much worse for me, and in the end, i had to give up my job as a result of the CFS, it took me 7 months to recover from that particular bout, which, has been the longest ever time, I am now post menopausal, and since then, my symtoms have eased somewhat, but, i am not as good as i use to be, so, im guessing this is what they meant by worse, as i get older, so, it is concerning, i mean, if we get neuropathy in certain organs, surely, they would one day stop working, and that is my concern!!

     

    Good luck

     

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    • Posted

      Everything you said was so helpful Elaine, Thank you! My sister has psoriasis and the doctors have suspected some type of autoimmune disorder in myself, I was never diagnosed with a specific disorder, just have a lot of autoimmune conditions. I have Endometriosis, Raynauds, etc...UGH...one of the things that is bothering me the most is my brain fog, my memory and word retrieval are awful!!! Of course the chronic fatigue is terrible! I'm so sorry to hear you had to leave your job! I work part time, some weeks only ten hours but it's a struggle to get up and out of bed every morning. I take Aderral just to stay awake, which I'm sure isn't a good thing. I think I officially started menapause two months ago, which is scary. Are there any treatments for CFS in the works, do you know? It's so hard when people think I'm just exaggerating how tired I am. Family and friends just don't understand. Good luck to you! I'm 50 and everything started with severe RLS and CFS. Not fun!!!

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  • Posted

    Dear Diane:

    I am 53 yeS nervous system.  The Neurologist said "anything on autopilot" will not work right and that it could not be fixed.  Only treat the symptoms.  I cannot tolerate cold or hot, do not shiver and suffer from hypothermia and in heat hyperthermia with electrolye imbalane.  I cannot be put on the following medicines by trial and error over years:  Beta blockers (my blood pressure goes up and down and this lowered it to 70/36), no SSIR's because afer a few weeks it causes depression (was used to balance PANS and SANS) a laudry list of others.  Xanax does seem to balance the PANS and SANS.  I know that each cause and each body will react different.  I have almost all of your symptoms.  However I have reactive hypoglocemia (RHG) in lieu of diabetes.  I drink on occasion, but of course did not at eight years old.  I consider someone that drinks excessively to perhaps be at risk of an issue with the ANS, but I do not like DRS that want to blame it on alcohol if you only use it in reason.  What is good for a diabetic is good for RHG, no alcohol or occasional use to minimum.  Low carb and Low Glycemic diet.  Although in my own research shows that the endrocrine system is not part of an issue with ANS (atuonomic nervous system), the PANS and SANS do influence hormones.  I say to DRS, my sympathetic nervous system is not sympthetic to me..  I go into the fight or flight SANS easily as having to baby sit my lack of body temperature and dizzy RHG, changes in blood pressure, heart rate, dialtion of blood vessels and or contriction of them or the pupils is all messed up.  I have learned to stand up for my rights and say not to medicine that makes it worse.  I do Yoga, Meditation, take .5 MG of Xanax 3 times a day unless the temperature is nice and I can talk a walk alone in the woods.  Unfortunately for me, and a lot of people with damage ANS system, it gets worse with age.  My condition will limit my life, in fact I am amazed I am still allive.  Noteworthy is information I came across is that at age 30 a human body's ANS will go aprx 1% a year (varies on issues whith our glucose control, it would go more rapidly than 1% without staying stringent on Diabetic diet and limiting anything that is toxic (good luck with air quaility have so many chemicals from factories, I live in a factory ridden city).  Write me back if you have any advice for me, and or we can compare our illnesses and help each other fine tune it without all those meds that well intentioned DRS that want to fix us but also blame the illness on us as well.  UGH, I am sure you understand that.

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