Diagnosed with autonomic dysfunction 2 weeks ago, symptoms dramatically getting worse! Help!

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I was diagnosed with Autonomic dysfunction about 2 weeks ago. Since been diagnosed my symptoms have gotten so much worse? Is it getting worse because of anxiety or can it just get this bad so quickly? Was having mild symptoms for 6 months before diagnoses, but never this bad! Help

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  • Posted

    Hey, sorry to hear you have been diagnosed with this. Have a search for the dysautonomia international forum on google, there are lots of people on there who can help support you through this time.

    Sadly from experience I would say that due to the things that the autonomic system controls having a high level of anxiety certainly can make you feel worse.

    What sort of symptoms have you been having and do your medics have a plan for you?

    Take care

    Matt

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    • Posted

      Thanks for replying Matt, symptoms have been cronic fatigue, dizziness upon standing but also when I'm at the gym, I was a person that went 5x a week and loved the gym and now it's become something I dread because I can't control my breathing or my heart rate and get dizzy off everything! And high heart rate and. Lols pressure. I was diagnosed by my cardiologist and he recommended I try find non medical ways to help before I go down the medical route? But if the non medical route doesn't help then my last resort is medical I guess. Going on a trip for 3 months soon and I don't want to feel like this... sad

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    • Posted

      Please do look up that forum I mentioned, it really is full of useful information. Also potsuk is another site worth looking at.

      Back in 2014 I was cycling everywhere and running at the weekends bit that all came to a stop with similar symptoms to you.

      I was recommended to do swimming as an exercise and increase my water and salt intake. The latter did work to some extent but it took about 4L a day to get there. I then moved on to propranolol which has worked well.

      I found that rest helped so make sure not to push it if you do go to the pool. Where before you were going 5x a week maybe go twice but for only 20 mins or so if you can manage it.

      The anxiety feeling can be a symptom of the autonomic dysfunction as well as coexisting and making it worse. The only way I found to cope with it was to try and step back and take each day as it comes. It is a truely horrible feeling but it will pass. Rest and sleep I found to be very important in helping with this.

      Are you UK based?

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    • Posted

      Yea I have been taking electrolytes and adding more salt into my food, and upping my water intake plus eating smaller meals more often. I work all day so would be hard doing 2x a day for 20min. Yea I sleep from 9pm-7am and Im still tired. But thank you for you suggestions it's greatly appricated. Im from New Zealand

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    • Posted

      Hey, I meant twice a week not twice a day! It sounds like you are doing all the right things. Is your trip going to be physically much more active than your current job?
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    • Posted

      Sorry! smile Yea I sit down at a desk for 8 hours a day so it will be alot more physically and mentally draining.
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    • Posted

      Have a chat with your medics about your trip, they may have some ideas. I wonder if it may be possible to build some rest / catch up days in to the trip to help you?

      All the best

      Matt

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    • Posted

      Hey, its been a couple of weeks, how are you finding things now?
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  • Posted

    Hello ambieejaye.  What type of symptoms are you having and how were you diagnosed?

    For me, I was officially diagnosed last summer through a QSART sweat test.  It is 100% accurate and I am a clear case of it.  Some Dr.s diagnose through symptoms and others the tilt table test.  The Qsart is accurate, I got it done at the neurological center at a hospital.

    I believe I have had autonomic neuropathy for a decard or two at least.  It's just that within the last year symptoms finally got severe enough to find the diagnosis.  I went to my doctors feeling dizzy and my vision was spinning.  It scared me.  My blood pressure was 85/46.  My blood pressure drops over the required amount to be classified as orthostatic hypotension.  I take medidrine now to raise BP.  I also get rapid heart rate after eating a meal no matter what it is or the time I have it.  I battle constipation, urinary issues.  

    I can relate to what your saying.  For the past 6-12 months I feel new symptoms and issues keep popping up, and it is very unsettling because you don't know where your at.  My newest thing that started happening is total body aches from head to toe.  It feels like my bones or inner core just hurts.  I can have that happen 2-3 times a week and sometimes I can go for several weeks without any total body pain.  And the body pain happens to me in the evening around 8 p.m. on or so.  I know drastic change in weather or chilly rain is a trigger for the body pain.

    There is no cure for our rare disease only symptoms are treated.  We live with it.  I asked my doctor if the disease can kill me he said very firmly no which is a relief.  But I am disabled and retired early.  I am going to be 54 years old and I fight intense fatigue, I now take meds for that.  I could not hold down a full time job if I tried.

    What form of autonomic dysfunction do you have?  I think many complain of POTS, postural orthostatic tachycardia syndrome - rapid heart rate.  I have beta blockers for that too but I only take them when needed.

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    • Posted

      Hi pugmom44,

      Thanks for your reply, my symptoms have been chronic fatigue, dizziness upon standing but also when I'm at the gym and high heart rate . I was diagnosed after an ECG on while I stood up and sat down plus a stress test as my heart rate would not go up during exercise and my heart rate went up over 30bpm when standing up after 10min. Thanks for you response!

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    • Posted

      Hello pugmom44.

      My symptoms sound very much like yours and ambiee...

      I do have the diagnosis of autonomic dysfunction confirmed by testing (normal sweat, abnormal tilt table and other) but I have orthostatic hypotention not POTS.

      Blood pressure medications only cause massive headaches for me.

      I can understand the physiology and try very hard to keep hydrated and increase my blood pressure.

      However, have you (or anyone else) been given an explanation as to what causes the extreme fatigue?  It has been so debilitating for me.  I was a very active person before this and have had to stop doing everything I enjoyed doing, including working!   I felt that if I could understand its etiology, I could do something to make the fatigue go away.  

      I also have the extreme pain "everywhere" (hands, fingers, knees, hips, etc) and have seen Rheumatology for this only to be told that I do not have any joint inflammation.  That did not help the pain.  I have done my own research and think that it is caused by tendinosis (not tendinitis).  Just starting to explore what I can do for that.

      Has anyone else been diagnosed with B12 deficiency as cause for dysautonomia?  

      Thanks for listening,

      N

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  • Posted

    Hello ,

     POTS is a strange condition it can be really bad for a day , a week or even a month ......😟😟😟

    Then its gone for a while ( hiding quietly waiting ) and come back light, moderate or just crazy...its the way POTS is unfortunatley, but your not alone we are here for you , ask any questions ....however silly they may sound to none POTS People you can guarantee one of us lot have had it, got it or know all about it .

    Lady Ami ...... 

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  • Posted

    sure sorry for your situation. I am 70 and have been fighting this for about 15yrs. I am in the USA and am a Vietnam veteran so everything I do has to be done by or through VA. I have symptoms of vertigo, short of breath, chest pain, dizzy, ringing ears, migraines, high blood pressure that drops with exerccise (bending, stooping), heart rate that climbs rapidly as BP drops, dizzy, chronic fatigue, sweating, anxiety and more. I have had three civilian doctors suggest Dysautonomia or Pots but VA says it is not and I have to just sit and relax when dizzy. I have passsed out twice while driving. I got rid of my beloved Harley and am very cautious of how I feel. My wife has found me more than once laying in the shop or out in the yard.

    I am truly sorry for your condition and the lack of knowledge about this ccondition. I am trying to research the symptoms on the computer as my VA odctors just blow me off and I need their approval to see an outside provider as I have no other insurance.

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