Whenever I browse forums on dysautonomia, I seem to find people coming off medications such as midodrine and fludrocortisone. I know that we all have different conditions, causes, degrees of severity (and I've been through dozens as we've tried everything to try to work out what's been going on), but it is depressing as I'm now running out of options at this stage as virtually everything causes another problem to get worse (e.g. cannot wear compression hose due to Raynaud's/numbness in feet, cannot fluid load becuase of hiatus hernia, salt causing terrible oedema etc). I get the impression that these medicines aren't really that effective for controlling these problems, particularly for those of us who have circulation problems caused by Ehlers Danlos.
My specialist, who dx'd the EDS, blood pooling and POTS has refused to offer me any treatment until I've had a full range of tests, which could be many months down the line and quite frankly I'm not really convinced it will be worth the wait, other than to satisfy his curiosity. His only suggestion was to take more salt and fluid (no suggestions about dosage), which has had mixed results, but which will be very hard to continue with because of the hernia.
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