Dysautomnia

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I went up to a London hospital last week and was told I had dysautomnia. 

I am 68 I was double jointed, then had PCOS

I felt reasonably well until the birth of my last son. I had  Hyperemisis Gravidarum (severe morning sickness for 39 weeks!)

After that I started to feel faint and now I have Sjogren's and POTS

however the neurologist I saw at the autonomic unit says dysautomnia 

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  • Posted

    Hi Pam

    I am sorry to hear of your diagnosis .I have Rheumatoid Arthritis andSjogrens And being tested for P.O.T.S.

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    • Posted

      So sorry to hear that, the POTS is secondary to Sjogren's. I am a member of the BSSA and run a FB group for BSSA members. They are going to talk about POTS at the next conference as I told my rheumy and she agreed I do have POTS!
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    • Posted

      The BSSA don't do FB but British Sjogren's is run by BSSA members for those who prefer FB to the forum
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    • Posted

      Sorry about that, I really was very ill on Monday as I had taken myself off Diazepam as Dr. Hagen suggested that Diazepam might affect the tests. It really was bad, I felt I was on fire all my cells felt as if they were being electrocuted my BP went sky high when it's normally and my pulse was off the scale! Interestingly I was born double jointed, the POTS started post birth of my last son 29 years ago but as a child of 11 I was prescribed Valium and diazepam had always been the best thing for me, It wasn't addictive just very helpful in times of need.
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    • Posted

      I'm trying to get my GP to do the right tests for POTS but she hasn't believed me about fainting.  I have a copy of my local Morrison's accident report book which clearly describes one of my fainting episodes.  I have been diagnosed with tachycardia as a result of complaining of syncope to my GP.   I think I've always had it as when I was well enough to go to the Gym none of the fitness instructors could explain my high base-line heart rate nor my 160-170 bpm heart rate on moderate exercise.  I was also prescribed Valium as a child - at 13.  I did however, find it addictive i.e. needed higher doses to do the same thing and felt dreadful when I stopped it dead.  I've struggled being on and off the drug, or alternatives all of my life since then.  I'm now five weeks away from 60!  I was stupid enough to point out to my GP that I thought I might be addicted to benzodiazepines.  Now, nothing I say is taken seriously because I have admitted to being a drug addict!!!!!    I'll keep on posting this in a many places as possible because I live alone and am afraid.  Passing out is bad enough but the last time, I fell in to a walk-in cupboard at an odd angle and bruised my cheek and forehead.  Of course, that was taken to be as a result of my 'drug addiction'.  If I'm found dead with head injuries then it probably won't be a murder mystery.  Just a lazy/incompetent GP.

      BTW - I've had two diazepam in my purse for emergencies for weeks and have been abstinent from alcohol for much longer.

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    • Posted

      Christine your post is most interesting! I am a little older than you but Too was prescribed Valium age 11! I have never found it addictive, however I have been running a FB group with little help in the last 7 months, so for the first time ever I have been taking 10mg of diazepam to get a good nights sleep. I went to the autonomic unit for a pre assessment and the consultant was worried that diazepam might alter the tests. I decided not to take them but this resulted in my condition worsening! You don't say what you have, other than syncope. I have Primary Seronegative Sjogren's Syndrome Psoriasis, PsA, Hypothroid, JHS, Fibromyalgia and POTS. I have always found that the ONLY drug that has really helped me was diazepam. I certain only take it at night, I do take quite a large amount of medication for my autoimmune diseases and Hypothroid. I feel perhaps you ought to challenge your GP if he really considers you a drug addict. Syncope or presyncope is concerning, you should have your GP on side. As you don't give an indication of what is causing your Syncope or the quantity of Diazepam you consume, it's difficult for me to suggest anything. All I can say is I have EDSHT I was born double jointed, was an anxious teen with a very high IQ but had lost enormous amounts of school due to ill health. I don't have syncope. I have felt faint from time to time for the last 28 years but I have never fainted except when a unit of blood was drawn for  my medical use. The next time I had to give a unit, I followed the protocol for POTS and sat and watched the unit drawn. Please DO try to talk to your GP, if you fail, I suggest another GP might help you. 
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  • Posted

    I am going to a Hospital in London in July to the only Autonomic unit in the country.I seem to fit all the symptoms of Dysautonomia..... Possibly caused by aggressive radiotherapy to my neck and chest in 2000. I hope they can get to the bottom of it all as I have had lots of health problems recently and have now been off work for 8 months!
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    • Posted

      Well I was born Hypermobile then caught Measles age 6! Everything has gone down since then. We might meet up, I am staying for 3 days soon I was told  
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    • Posted

      So sorry to hear all your problems, yes I believe that operations, childbirth, trauma, being double jointed can affect you automatic system. To be honest as this is all breaking science I doubt if any beyond this one hospital will begin to understand what we are going through. I did mention dysautomnia to my GP 3 years ago. I have Sjogren's and POTS is being talked about at their next conference. However I know I have had dysautomnia all my life. I go septic easily, I find sleep difficult, I have often felt nervous, been 'diagnosed' with depression which I knew I didn't have. I just hope that I can get some answers from the tests as to why I have felt and been ill all my life!

       

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    • Posted

      Sorry I have just got worse and worse my head is all over the place. I have Sjogren's but no markers other than a positive ANA so I am odd to say the least. I went there last week thinking I would be tested for POTS, no they said it will be for Dyautomnia! 3 years ago I said to my GP I think I have Dyautomnia, he remember this conversation. I was born to a dad with flat feet and a mum with Psoriasis. From birth I had an umbilical hernia, a lazy eye, Measles with pneumonia, then all the glands up, mouth ulcers, terrible pains, migraines etc so lost 3.5 years of school. I passed my 11+ We moved, went to local Grammar School then I had PCOS and was told I wouldn't have children. We did 4 boys! It was post birth of the last that I statrted to feel faint then diagnosed ME, Sjogren's, Hypothroid, Psoriasis, PsA and Hypermobility syndrome, Fibromyalgia and POTS. That is my life of illness, of course the terrible thing was I was born Hypermobile and it was only when my Rheumy diagnosed that I had scoliosis I found the Hypermobility and POTS and she agreed!
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    • Posted

      Well we may both be in there at the same time! I persuaded my GP to refer me thinking it would be POTS, as I am Hypermobile and have Sjogren's but Dr Hagen said no you have Dyautomnia! I am so sorry about your radiation problems, my husband had radiation for Prostate Cancer and has been wobbly ever since! I have kept on to him and my GP that he is now so unsteady. 
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    • Posted

      Pam, POTS is a form of dysautonomia! So it may just mean he identified some other autonomic issues as well as POTS. Have a search for the DInet forum on google etc, its a good source of useful info.
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    • Posted

      No Matt I haven't, I was born Hypermobile then had PCOS which I think is also inherited. Fast forward half a century I not realise these 2 disorders haven't been properly understood! I keep saying I was born 68 years too early! Yes so by my reckoning I have secondary POTS to EDSHT, secondary POTS to Sjogren's BUT the feeling faint dizzy etc all jumped on post the birth of my last son when I had sever sickness for 39 weeks, so very POTSy or diautomnia 
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    • Posted

      Hi I am going in on the 29th July for 3 days they rang yesterday thank goodness. How are you getting there as I have to be in by 10am! When I went for my assesment I fell in the taxi and I am even weaker now! Dr Hagen commented on Diazepham so I took myself off them, I have always found then so useful from time to time, I never felt addicted, so I stopped with rather dire consequences! I didn't realise I was so ill!  GP gave me Loratemazepam and steroids. The steroids stopped on Monday, yesterday everything went downhill again, so goodness knows what is going on! I have Primary Seroneg Sjgogrens and lots of other AI problems and was Hypermobile still am slightly 
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    • Posted

      Matt do you have Dysautomnia and how are you coping with all the weird symptoms, I go for my assesment on July 29 which seems a long was off in the state imam in, prior to that I see my rheumatologist in Swindon but it will be a long drive to see her, I help run a FB group for Sjogren's so at least I will be in a position to up date her on that, but these wired symptoms which are more neurological than rheumatalogical are to day the least a tad disconcerting
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    • Posted

      Pam, I do have dysautonomia. I don't get low BP so no dizzyness, I get an increase in BP, vision problems, savage levels of fatigue, hands that change colour and go extremely cold and change colour and a doubling of HR on standing. Its no fun at all. There is a wealth of information and fellow sufferers at forums.dinet.org.

      Hope your appointment goes well and they can help you out.

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    • Posted

      Hi there well good luck I have a date now July 29th I will be glad to get sorted eventually. I have had a report from my initial assessment to find I have no reflexes in my legs! I can't believe that the surgeons never thought to ask if I was Hypermobile which I am and was!
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    • Posted

      Hi Matt yes the same, my feet are freezing in this hot weather and NOW I have no reflexes in my legs! I will be jolly glad to get sorted out! 
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