Retraining your Autonomic Nervous System?

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Hi, 

After being told I have Autonomic Dysfunction by my cardiologist, he said a few things like I would like to ask someone who has lived with it? He first said Autonomic Dyfunction is curable, by retraining your Autonomic Nervous System, things like HRV heart monitor (sycing your breathing and your heart rate together) But he also said astronauts get it in space and retrain there nervous system? I guess my question is can It really be cured? Thanks

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  • Posted

    Hi ambieejaye,

    My neurologist, cardiologist and the internet all say it is not curable if it is truly autonomic dysfunction.  I have read it can often be misdiagnosed due to similar symptoms of other conditions.  It is a rare disease only affecting 1% of our population.  I was confirmed with it through a QSART test done at a neurology center at a hospital.  The test is 100% accurate.  I am hopeful you truly don't have AD.  The good news is that the symptoms are treatable with meds and it rarely is a fatal disease.  We just have to live with it's annoying symptoms.

    • Posted

      hi Pugmom44

      I have a question for you. Will you please tell me what is the QSART test and how it is done? Also, have ever had that test done as well.

      Also, in order to be diagnosed with autonimic nervers system dysfunction how many episodes of near syncopes or vasel vagal should you have?  And do you know how many times in a year a person will have the episodes? 

      thank you

    • Posted

      Hi 16287.  I haven't actually fainted but have had blood pressure so low 85/46 where I was dizzy for several days straight and my vision was spinning.  Very frightening.

      Here is a link that explains the QSART test better than I can.  It is a painless test and you are completely awake.  Nothing enters your body, just electrodes are placed on the lower portion of your leg and on one arm.  I strongly suggest you have it done.

      There are different types or symptoms of autonomic dysfunction.  The umbrella term is called dysautonomia.  

      I am not a neurologist, however I am well read.  And from what I read all symptoms possible that are truly caused by autonomic dysfunction all are associated to miscommunication of brain messages through our nerves to our autonimic body functions.  

      I have not had the tilt table test and have chosen not to get one because I don't think they are clear and definitive.  Lots of people could get dizzy or have their blood pressure go out of wack from being positioned in different angles on a table.  Who knows, it could be a med they are on, whether or not they are properly hydrated, etc.  

      However the QSART test truly tests the nerve communication and response to the sweat glands.  From what I understand a person with true autonomic dysfunction will either perspire excessively or very little to none.  I did not sweat.  I feel hotter than most people where they may feel comfortable in a room.  But when i open windows or blast the air conditioner I feel good at the moment but later that night I get head to toe body aches.

      My QSART test was done at the neurological center at JFK hospital and my results was read by a trained licensed nuerologist specializing in the test and the condition.  My own nuerologist didn't have me do the tilt table test, he said go straight to the QSART test.  We want to make sure we have the correct diagnoses.

      I have almost all of the symptoms.  Low blood pressure and orthostatic hypotension.  I take midodrine daily to raise and maintain BP.

      I take a beta blocker to control my tachycardia - rapid heart rate which is troublesome for me in spiratic times.  My heart was fully tested and I don't have a heart condition.  I had an echo, stress test and 30 day holter monitor.  All clear, so it is my autonomic condition making my heart race at times.

      I battle raging fatigue.  I now take a medication nvigil, now generic armodafonil.  That med is a God send.  I was sleeping 12-16 hours a day previously. Now I can get by with only 9-11.

      I deal with constipation and body pain.  I also have action tremors in my fingertips.  I have no idea if that is related to the AD.

      Unfortunately I have most if not all of the symptoms.

      I wish you well and i am glad you are here to share.

    • Posted

      Hi Pugmom44

      Thanks for your fast respond to my post. i am sorry that you are dealing with all those symptoms. i truly hope you get better. i know how hard it must be for you. Well to tell you about the incidents that i had which created so many questions like was that seizures, or syncope that i just had. well my first episode happened when i was i behind the red light waiting for the green light to turn to left. while waiting i felt a blow to my chest and suddenly i slow down to the point that i could not even move. but i was still conscious i could hear and see people but i was locked in my body. so when i saw the green light i gathered all my power just to move the wheel for a bit and to push the peddle. i knew i was moving so slow and i could see that was almost hitting those cars that were parked on the right side of the street. i was crying out for help inside but i could not say it at loud. so when i saw an empty road i hardly turned the wheel to that direction and just went there. i could not move my legs or anything. my foot was on the gas pedal and i was going toward a big building. i was scared and panicked beyond the words because i could see that i was driving myself into the building. so at last minute exactly in front of the building something changed in me and i just hit the break hard and stopped the car and jumped out of it. i was shaking, sweating all over and crying. there was no one there to help me. so i grabbed my phone while shaking and called my sister. she came out to me right away and was so shocked. she took me to ER and no Dr. could tell me what happened to me at all. just one Dr. told me that i might had a near syncope and advised me to see a cardiologist. so i went to the heart Dr. and explained everything. and he did EKG, carotid and heart Ultrasound, and Holter monitor for one day. and all were normal so he told me that i was ok. but asked me to see neurologist as well. i went and saw several of them just to get the different opinion and none even thought about autonomic dysfunction or even seizure. the last neurologist was at Stanford Clinic and he was specialized on the autonomic nervous system but he wasn't concerned about it at all. then after a while there was a second incident that happened to while sitting in the class listening to the lecture. i was playing with my hair and trying to put it up that i accidentally pulled some hair from behind of my ear. that area is little bonny as well if you touch yours you’ll feel it. anyhow, the moment the hair was pulled i felt tingling and warmness beginning from top of my head and was going down slowly to my legs. i was fainting as well because i was losing my ability to sit or to control my body. then i got panicky and i gathered all my power and tried to stand up. i did but then i hit the classroom door and my classmates ran to my and hold me still. then i was ok. but i went to school health care to see what just happened to me and they did EKG and took my blood pressure and all the neurological reflexes and send me home. again no one could tell me that what just happened to me. up to this day i cannot understand that why pulling some hair could cause that episode. because I’m sure everyone might pull their hair while brushing it and that should not cause them that horrible episode. so i don’t know was it a nerve that I’ve pulled on accidently or what. those scary episodes that i had made me lose my confidence to drive alone again or go out alone since i don’t know what was the cause or the trigger points i am always afraid that i might have the episode anytime. and finally the thing that bothers me always is that my body is very cold specially my feet. i do not have cold tolerance at all. even in the middle of the summer my feet are frizzing. and if i go to the cold stores i begin feeling slow and i feel my heart is beating slow too. then a cold sweat covers my whole body. so i ran out and stand under the sun. or whenever i get anxious, stressed, excited or angry same coldness and the slow heat beat with the cold sweat happens to me. 

      sorry to give you a headache with my long post but i thought to share with you what happened to me and what symptoms I’m dealing with. 

       

  • Posted

    I have autonomic dysfunction and was told it is incurable and there is no treatment.

    They treat the the individual problems that it causes.

    You can learn to live with it

    • Posted

      I agree Kim.  No cure but symptoms are treatable.  How were you diagnosed?  Did you do the QSART or tilt table test?  I think the only official diagnoses of autonomic neuropothy or dysfunction is through a QSART test.  I was told that it is 100% accurate.
    • Posted

      I had the table tilt test. But I was sent the the epilepsy clinic and I fainted in the clinic. I was sent to have the epilepsy test. I have never had the other test you mentioned. My attacks are now controlled and I have about 5 a year now but to prevent them I can not use oven, microwave, any knifes other than a dinner knife. So I am now disabled. It toke me a number of years before I got classed as disabled as they said I could buy ready made food.

      Every one with this illness has a long fight.

    • Posted

      Hi Kim.  The tilt table test will show issues with vertigo or orthostatic hypotension.  Those tests themselves are pointers or indicators of possiblity but not ultimate definative.  

      I suggest that you talk to your doctor about having the QSART test.  It is 100% accurate byond any doubt of Autonomic Neurophothy or dysfunction.  

      I am so glad to be able to talk to other people with AD as it is a rare diseasee only affecting 1% of the population.

    • Posted

      My doctor won't send me back to the hospital that I was under years even after I have asked them to.

      My doctor has now put me on gaberpentin tablets as I now have muscle spasms in the lower legs causing me to be unable to walk and from pain I have from arthritis.

      I live in london and my doctor has to pay to send me to the Specialists in this field and they are trying to save money by treating me themself.

      I am on the highest dose of these tablets which make me so tired that I can fall asleep in seconds, the other day I fell asleep on the bus and smashed my nose on the rail,I was very lucky that I did not break my nose.

  • Posted

    It took me 17 years before I was diagnosed and I was told many times that I had epilepsy. The last doctor I saw before being diagnosed told my mother after she was told it is epilepsy and she replied no it's not she's had the test he said it is and I'm sending her to the epilepsy hospital who would prove it's epilepsy and I don't care what the test show. That was the hospital that diagnosed me.

    I had the test for epilepsy about 10 times so it does look like other illnesses

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