What next?

2 years ago I started with really band hand tremors and was diagnosed with functional tremors then 6 months after i suddenly blacked out one morning, i felt pretty ruff, by the evening I was blacking out if I sat up or even turned my head. The Dr was called out, and thinking it was an ear infection put me on drugs. Two days later he sent me into hospital for test, I stayed there 3 weeks, with very few tests actually being done, but slowly I was able to sit up.. I was blacking out at this point 50-60 time a day. My go did a 24 hr blood pressure monitor which showed I was low but not dangerously low. Saw a cardiologist which specialised in syncope, privately, who did a few more test and was told I have reflex syncope. I was prescribed midodrine, and worked my way up the levels to 12.5mg (I know this is high) which gave me heart palpitations, so went back to 10mg. I am still blacking out but only 4-7 times a day. The cardiologist I was under decided I needed to see another cardiologist specialist and then was told I may also be suffering with non epileptic attacks. I have read up on this and I am trying to get my head around this, he now wants me to see a neurologist about it.... but doesn't know where to send me. In the last 2 years my life has become none resistant as I can't leave the house without my husband, if I try and walk any distant, or no distance at all I black out. Wondering if anyone out there has had simular and what happens next.....?

Thanks

2 Replies

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  • Didn't want to run without replying, but I'm afraid I can't really help. My dd faints once a week (nothing compared to you but bad enough!), used to be 4x a day but also has GI issues, low blood pressure, allergies. Now on midodrine which helps up to a point. I know there are other meds out there that might be worth trying. Is it worth researching an autonomic dysfunction specialist? Good luck

  • Thank you I will look into that, just would help knowing what I am dealing with. X

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