katcanny Posted October 2, 2019 Report Share Posted October 2, 2019 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 Quote Link to comment Share on other sites More sharing options...
katcanny Posted October 5, 2019 Author Report Share Posted October 5, 2019 Hi guys anyone got any experience with using dexamphetamine while having PoTs? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted October 8, 2019 Report Share Posted October 8, 2019 I take 2.5mg of Adderall most days - one day off per week, and sometimes 5mg if I haven't slept at all. It hasn't changed my HR at these doses, nor have I had other issues from it, and gives me a bit of energy and "aliveness". I feel like I have slept more than I have. Quote Link to comment Share on other sites More sharing options...
Lily Posted October 9, 2019 Report Share Posted October 9, 2019 I'm also on Adderall, which is in the same class as dexamphetamine. It works well for my ADHD, and I think it helps my poor deficient blood vessels to contract more than they otherwise would. It does not cause tachycardia episodes for me. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted October 10, 2019 Report Share Posted October 10, 2019 I should've mentioned that I don't have ADHD, and adderall does increase my BP a little . I'll  take all the help I can get! Quote Link to comment Share on other sites More sharing options...
katcanny Posted October 13, 2019 Author Report Share Posted October 13, 2019 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? Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 13, 2019 Report Share Posted October 13, 2019 @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!!!! Quote Link to comment Share on other sites More sharing options...
Lily Posted October 14, 2019 Report Share Posted October 14, 2019 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.  Quote Link to comment Share on other sites More sharing options...
Peter Posted July 15, 2022 Report Share Posted July 15, 2022 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 Quote Link to comment Share on other sites More sharing options...
Minnie21 Posted November 28, 2022 Report Share Posted November 28, 2022 Dexedrine very much helped me. I was on it for a few years and was able to work.  I no longer need to take it nor any other prescription meds.  My dysautonomia symptoms are now minimal as are my migraines and chemical and scent intolerances  Quote Link to comment Share on other sites More sharing options...
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