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PoTs and dexamphetamine?


katcanny

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Hi all 😊 my specialist has just decided that he wants to try me on dexamphetamine I have no idea why and quite frankly I am very nervous about it, I don’t want to end up in a tachycardia episode and end up in hospital and scare my son. He also thinks that I may have vestibular migraine but didn’t explain it much and said that testing was really hard so if the dexamphetamine doesn’t do anything I’ll try a drug to treat the migraine and if it works then it’s a diagnosis? Has anyone else tried dexamphetamine who has PoTs? And any info on the vestibular migraine from other people who have experienced it would be great rather than relying on doctor google

kat xx

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Thank you for the responses, I get bad brain fog and afternoon fatigue where I will fall asleep but I won’t even realise I have until I have woken up an hour or so later. My specialist wants me to try this and hope that I can come off fludrocortisone as I’ve been on it for three years now and my weight gain is becoming an issue. 40 kgs I have put on and everything hurts I’m not use to being so heavy. I’m worried about how I’ll feel coming down once it wears off. Do either of you find any effects when it wears off? 

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@katcanny  I take Ritalin, which is also a stimulant. It has helped me greatly with energy and fatigue. I was supposed to take Modafinil but my insurance did not cover that. Since I have hyperadrenergic POTS I was worried in the beginning that it would cause me to become hyper but I tolerate it very well and have been on it for years. I have learned that we have to try all medications to find out how they affect us. Be brave!!!!

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I take the XR version, which lasts for 8 hours or so.  I also take Wellbutrin, and taking a non-stimulant along with a stimulant can help decrease the necessary dose and also make the wear-off period more gradual.  I usually do not notice when it wears off, but it is noticable when it gets to my brain in the morning.  

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  • 2 years later...

I started slow release dexamphetamine ( Elvanse in uk 🇬🇧) this week for POTS & Dysautonomia as a result of so called Long Covid ( LC) from a Covid cold in March 2020. 
18mg 5 minutes before bedtime. I have been sleeping well, although only for 6-7 hours. But the amazing thing is the low blood pressure has disappeared & the awful LC hangover & brain blanks are massively reduced.
however 18mg makes me feel too good, and messes with my Pacing Therapy. It’s ok to cut the capsules in 2 or unscrew the cap, as it’s a slow release power inside that is a pro-drug (ie it’s a chemical that only turns into an active drug once it’s undergone metabolic action in your gut / blood ).
I am definitely finding using it BEFORE bed is the most useful

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  • 4 months later...

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