Dysautonomia (Autonomic Dysfunction) Community
Desperately seeking a diagnosis. Maybe you can help?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Desperately seeking a diagnosis. Maybe you can help?

Four months ago, I began to have these episodes, mostly in the late morning or late at night, which began with tachycardia and then severe nausea and then profound weakness. I'm being treated by a GI surgeon for fibromyalgia (he believes it is traced to a common virus and has a new treatment protocol for it), and he diagnosed the attacks as gallbladder. I had a couple of surgeries, took a while to recover from them, and the attacks started again. At first, because of the nature of the surgeries, it was the nausea that seemed most prominent, but now it's the tachycardia, dizziness, and weakness that seem more debilitating. I have tachycardia upon rising in the morning, but the full-blown attack doesn't begin until a few hours later, and I feel weak and sick in a way I've never felt before. I can only lie around and wait for it to pass. Generally I feel more human around late afternoon, early evening. This has begun to be a pattern. The GI surgeon says this is the fibro virus and has me on anti-viral medication. I saw a regular GI doctor, who performed an endoscopy recently, and his theory is bile in the stomach. While searching for my own answers, I came to webpages about POTS, dysautonomia, and this does seem to me, based on the various descriptions, like the sympathetic and parasympathetic nervous systems are out of whack. I'm a teacher and have been on summer break, so this happened during a low stress period. I fear I will have to take a medical leave and am considering an appointment with the nearest Mayo Clinic. I live in an area that isn't rich in out-of-the-box or off-label thinking about mysterious ailments. The doctors I've experienced here are very conservative in their view of health and the body. I imagine the next specialist to see should be a cardiologist and/or neurologist? Does any of this sound familiar to anyone? Very grateful for any help or insight anyone might have.
Tags: Dysautonomia, fibromaylgia, POTS, tachycardia, weakness, nausea
6 Comments Post a Comment
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Avatar_f_tn
Hello, the dizziness and weakness is one of the symptoms of pots,  I have gone a few years with no symptoms then they come back again, it's usually when I get up in the morning but it can happen any time, I feel a bit dizzy and have to lay down, sometimes I get it so bad I cannot even get up and have to stay laying in bed, i can feel sick, weak, shaky and sometimes it panics me even though I've had this for over 30 years.  I don't pass out much now but feel if I don't lie down quick I might do.  Like  you I feel better usually in the afternoon or night. Over the years the drs have all said different things like blow into a paper bag???? your one of the people that just faint. After 30 years of this I finally had a tilt test at the hospital last year and straight away I was diagnosed with pots syndrome, my heart beats faster when I stand up or stand for a long time, it was a relief to know i actually had something wrong and wasn't going mad, i think the tilt test is the  only way they can find out if its pots.I was put on a small dose of heart medication but a few months ago I lost my dad and my symptoms got much worse I would shake and feel faint and couldn't go anywhere, I haven't been to work for a few months now and lost all my confidence to go out in case I faint, I've read all different sites about pots and fainting and started using b12 spray and drinking lots of water and putting a bit of salt in the first one, I started to feel a bit better but still not 100% then i read about Bachs rescue remedy and stared it 4 days ago and I feel fine, its herbal and non addictive and just calms you down and you breathe better and feel relaxed. I went out today and thought I was going to start feeling dizzy and just put a few drops in my mouth and I was ok. I'm in the uk so all the hospital treatment is free but a tilt test can confirm if you do have pots or not. If you can get Bachs where you are it may be worth trying as it wont harm you and its only about £9, I'm thinking of stopping my tablet and just using the Bachs because Im starting to feel like my old self again, good luck and I really hope your symptoms disappear.  
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Avatar_f_tn
Thanks so much for your reply.
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612876_tn?1355518095
There is some overlap between fibromyalgia and dysautonomia. I think considering your symptoms and history, it is definitely advisable that you be tested for autonomic dysfunction. It's possible that the specialists who are already treating you could refer you for this testing, but if they're not particularly keen on the idea, then yes an electrophysiologist (cardiologist) or neurolo-muscular specialist would be your next step.

Let us know if you have any other questions or concerns, and welcome to our community!!
Cheers, Heiferly.
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Avatar_f_tn
Thanks, Heiferly. I appreciate it.
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Avatar_f_tn
I agree with Heiferly that an evaluation for dysautonomia would be best.

Where do you live?

Laura
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Avatar_f_tn
Hi, Laura. I only just saw your question. I live in the deep South part of the US. My symptoms got a lot better since I posted this query, and I was feeling the worst of it might be behind me, but then all the terrible symptoms returned after a stressful situation arose, so I'm as I was before. I found an actual dysautonomia clinic an hour away from me and have testing scheduled for next week. I don't have any fainting, though occasionally I get dizzy if I stand up too briskly--can one be dysautonomic without being a POTS sufferer? Thanks for your reply.
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