Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Autonomic Disorder Center at Stanford

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Navid, Jan 13, 2017.

  1. Navid

    Navid Senior Member

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    Has anyone been here? It looks they have expanded quite a bit. My Biggest problems seem to stem from POTs/NMH/OI. Cant be upright for more than 5-10minute without becoming debilitated by exhaustion...also belive dysfunctional autonomic system does to allow me to get refreshing sleep.

    Never have had real TT. But my heart was looked at by Cheney while I was strapped vertically to a table. Showed Dystolic Dysfunction. Also poor man's TT show significantly low BP and 30Pt increase in HR upon standing. Symptoms also include no temperature control, extreme night sweats, feeling worse in am and best in pm. Awake after 4 hours sleep with extreme adrenal rush, nausea and all symptoms of illness at their worst.

    Brown outs were one of my first symptoms as the disease started to become disabling.

    Any input welcome.

    Thanks, Lisa
     
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  2. halcyon

    halcyon Senior Member

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    I've been there. I have mixed feelings. The neurodiagnostics lab is state of the art. They do full autonomic testing and the people working in the lab are friendly and accommodating. Unfortunately the clinical care from the clinic appears to be less than stellar. Most people you will talk to find the followup from the doctors there to be practically non-existent. The lead doctor, Dr. Jaradeh, wouldn't take me as a patient as I believe he is not accepting any new patients. I found out later that there are several other doctors that work in the clinic, I'm not sure why I wasn't referred to them instead. So on the one hand it's great to have documentation and a better understanding of my problem, but I have no doctors locally that are able to interpret and use the information to treat me. I may try to get another referral to one of the other doctors in the clinic in the near future.
     
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  3. Sing

    Sing Senior Member

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    New England
    I have a specialist in autonomic disorders at Dartmouth and was well tested but there didn't turn out to be any medications or treatments that I didn't already use, namely midodrine and fludrocortisone as well as taking in a lot of salt and water. The support stockings help just a little bit but as they bother my neuropathy too, I stopped using them. I have read or heard--from the Dr. Peter Rowe material/videos here in the archives (he is the specialist at Johns Hopkins for young people with POTS) that those treatments are mostly helpful for his young patients and not much for the older ones. Less touted, but also true, are that caffeine and cortisol, if you either need and are open to trying either of those, help a bit too. I am in and out of black outs and also used to wake up in the middle of the night wired and unable to go back to sleep, so I can understand something about what you are experiencing. By the way, trazodone was the biggest help for me for this type of sleep problem. That and keeping carbs relatively low in the evening. If the blood sugar is jumping up and down all night, that could definitely be waking you up too.

    Wishing you the best at this clinic and if they can help you, report back!
     
    Last edited: Jan 14, 2017
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