andybonse Posted January 21, 2017 Report Share Posted January 21, 2017 Hey guys! Been a while since I posted! How is everyone? :-). If you remember reading my posts about alcohol helping my symptoms, I've figured out why. Fludorcortisone nearly 1 pill was causing me to have a very tight head/lighteaded not here feeling a lot of the time. When I drank alcohol, this went away and I felt great! So, I went down on the fludrocortisone to half a pill and poof, my head feels SO MUCH BETTER! So I believe the alcohol was having a diretic effect of losing water and salt thus working against fludrocortisone in the way it was causing that symptom! The only good thing is, fludrocortisone stops me feeling light headed in a lower bp way, even though my bp is always normal or higher and it controls my heart rate. But I can't live with that head feeling, it was horrible. Plus it was dropping my potassium. An Endocrinologist said my aldosterone was low too due to the Fludro which was a sign I was overdoing it! Such a low dose too, weird. I always have said my body was retaining salt and fluids on its own when up right so add florinef to the mix and its double trouble LOL. Anyways, it's left me having to up my dose again on the florinef as my tachycardia and hard beating heart has returned, mainly after eating a large meal or when hot. Plus, PACS and PVCS are worse on lower doses of fludro, I'm not sure why? Maybe a higher sympathetic thing going on to try keep things normal. One thing that scared me, the other day. I had around 6-10 PACS in a row, which I've NEVER had which really shook me up, I didn't catch it on my handeld ECG, but I know my PACS from my PVCS by the feelings. Maybe a run of SVT, weird. I've had so many heart tests so I know it's not dangerous, or I hope not. Some good news, I was well enough to go to London and see Prof Hakim and get diagnosed officially with EDS type 3, woo! I was worrying about the vascular type and he reassured me I don't have any sign or symptom of it and he'd bet me £1 million I don't lol. So that's a positive! Also, my breathing is still good in comparison to how it was before. Question for people with breathing issues: Does it get worse when your driving or in a car? - I believe the motion moves the blood against gravity which causes mine to get worse! Future plans from here out: Stay off of alcohol for a few months(heal that liver lol), I was getting addicted, especially since it was making me feel better. It just took an extra few drinks to wake up the next day and feel like I was literally ready to curl over and die! Get my fludrocortisone back to a tolerable level to control the HR Exercise more Return to drinking alcohol in a small amount when everything is controlled once per week maximum as I enjoy it with the partner. Hope they find the cause with this research soon!!!! For all our sakes! Andy :-) Quote Link to comment Share on other sites More sharing options...
corina Posted January 22, 2017 Report Share Posted January 22, 2017 Hey Andy, great to hear from you! Sorry things aren't going as planned, I hope your new regimen will help you get back to a better quality of life. Take care! Quote Link to comment Share on other sites More sharing options...
angelloz Posted January 22, 2017 Report Share Posted January 22, 2017 Interesting observations! Quote Link to comment Share on other sites More sharing options...
yogini Posted January 22, 2017 Report Share Posted January 22, 2017 Florinef helps to bring up your BP and you feel better with higher BP. Maybe there are other treatments that can help you do this that don't have the same effects as florine? There are other meds which raise BP and also things like compression hose to talk to your doctor about. Quote Link to comment Share on other sites More sharing options...
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