Autonomic Dysfunction

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I would love to hear if anyone else has my condition. I was finally diagnosed today with autonomic dysfunction. my symptoms are sweating, fast heart rate & palpitations. All these symptoms are made worse with eating. I was sent home from the hospital with no guidance other than to avoid normal meals & to graze instead. Is there any help out there? I feel very frightened & alone.

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  • Posted

    Amber --- You are not alone! I have been struggling for years with this odd condition. It is not easily diagnosed, I have had it since I was born and am now in my sixties !!! Don't give up.
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  • Posted

    Hi I have ME and since 2007 have peripheral and autonomic neuropathy. I take nerve pain blockers and a beta blocker which has helped with the tachycardia, BP and breathing problems. I have also found out a lot from the internet. Drink lots of water and I mean lots and take extra salt to help balance fluid/blood. Raise the head of the bed. Have 4-6 small meals a day. Avoid carbs and sugar, gluten and dairy. Eats lots of veggies. Keep mobile and warm. Therapies that help include massage, chiropractic and physio therapies. I'm going to try low level light therapy for the pain. Some people use TENS and EMS machine to help with any pain and circulation.

    I take Gabapentin for pain and Duloxetine to help with sleep etc. Propranolol beta-blocker which helps with heart etc. Message me if you want any help smile

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    • Posted

      I'm curious to know if you went on the gluten, sugar, carb free diet because of your stomach hurting or because it messes up your POSTS and causes you to have an episode

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  • Posted

    Yipee ! You are the first person EVER I have come across with ANS. I have all the symptoms listed except my bladder is still working (at the moment). I have a very limited diet as I cannot digest food properly so am a virtual vegan (I can eat eggs ) but not by choice. I have been on anal irrigation (peristeen) for four years and call it Dynorod Ha Ha. If my heart is "flippy" it makes me too hot, a bit sicky and dizzy. Grrrrr If it is "floppy" my blood pressure drops and I can be stone cold for hours. I have blurred vision, very annoying, and it too is erratic, all my symptoms are unstable. I am on pregabalin a very low dose (50mg at night ) as I do not tolerate drugs well. I am sorry you have to deal with ME as well as it is so debilitating for you. Personally I try to make a joke about myself it is the only way I can cope and it works 99% of the time. Happy to be contacted. Thanks.
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    • Posted

      My husband has ANS and recently was put on a new medication from Northera Droxidopa.   He has been on it for three weeks now and has not had any fainting, falling, drops in blood pressure or going into a catatonic like state after fainting.( which sounds like what you call stone cold.  Luckily he never broke bones when he lost consiousnes and fell.  We are also lucky to have a hospitalist dr that had recently read an article on this disease.   We live about 30 miles from Froedert Hospital in Milwaukee Wisconsin and they have a autonumic clinic.  
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  • Posted

    I have been diagnosed with same. Every day a challenge, different. It has affected legs, bowels, bladder, gastric, breathing, bp and more. In response to yours, grazing is fine for gastric but in my case I cannot eat any fats, sugars, processed foods, breads, oils, and more. I basically survive on lean meats like chicken and fish, Activia yogurt, and bananas. I venture to eat thgs like Brown rice, fresh vegetables and fruit but that would be on a "decent" day. With gastric issues i suffer with pain, nausea, vomiting, bloating, severe constipation and sometimes uncontrolled diarrhea. I was hospitalized month ago with this for 5 days. My bp sometimes goes to 200 than I cannot walk ..cannot feel my legs among other terrible things. When this first started 3 yrs ago I was bedridden for 3 months. Somtimes I am so weak and shaky I cannot walk or function. I have lost about 80 lbs. This problem has also affected memory as well as eyes and throat and is very detailed.

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    • Posted

      Hi Nancy just came across your post and wondered how things are as have the same issues as you and don't know where to turn ... seen so many doctors and can't get a formal diagnosis with so many symptoms ... just wondered who you saw?

      Many thanks

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    • Posted

      Was your vagina affected? Cant find help. Lost period and seems to be atrophying sad. Seems like ans breakdown caused it fast in to med reacrion i had..i mean the nerve loss was fast then its been all muscle atrophy...
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  • Posted

    Hi Amber.  I'm sorry that you are dealing with this rare but troubling disease.  I too get a very noticable increase in heart rate after I eat.  It doesn't seem to matter what, when and how much I eat.  I take a beta blocker as needed and had my cardiologist check my heart out completely and it's fine.  I also take midodrine to raise my BP.  My problem is the opposite of yours, I don't perspire enough and sometimes not at all.  Did you go for a QSART test, it is 100% accurate in diagnosing Autonomic dysfunction.

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  • Posted

    Yes me too but i have gyn, bowel and bladder all damaged and atrophying. Its been a nightmare since drinking nystatin oral suspension and reacting. Lost my whole life. Docs all unfamiliar. sad sending support
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