Lizzie

@angryhacademic Thank you, that's really helpful. 🙂

@MissT_chem Annoyingly they just say regularly. Mine was caught at 3 monthly tests, it was just above ref range then 3 months later 0.2 units away from being admitted. I think 3 monthly is a fair interpretation of regular. Sorry its a battle for you 😥

Am i the only one who magnesium doesnt help for sleep? Ive tried 3 types now and nada. Not even a twinge of drowsiness. I take it on waking now (because i take fludrocortisone) and makes zero difference

@angryhacademic Doubt they will, they never want to do the tests I ask for! Do you know what 'regular' means in terms of potassium checks? I've been told that 6 monthly should be fine.

@MissT_chem Worth asking if they will check Mg. Mine stayed stable so far even when potassium tanked, weird 😆 the BNF recommends regular potassium measurements on fludro, in case your dr ever gives you grief getting that checked you can throw the book at em!

@angryhacademic Thanks, knew about the potassium but not the magnesium, which I've never had checked. Getting potassium checked next week so will consider supplementing Mg if my potassium is on the low side again. Hope you've got yours under control now!

@MissT_chem Fludro helps store sodium but excrete potassium and magnesium. Should get electrolytes checked regularly on fludro. Took i think 18 months for my potassium to tank, luckily i was being monitored (i was actually supplementing when it started to drop too & still went hypokalaemic!)

@geniusfoods is this a new low calorie version of your tiger bloomer? 😬

@angryhacademic I think pacing is the hardest part, once you've mastered that (to some extent anyway), functioning is much easier!

@MissT_chem Thank you! Mystified how i have not completely awful function (if i pace etc) mainly 🙃

Overall, I'm pretty sad about these results, I had very high hopes for mestinon in improving POTS as well as PEM, but I can't say anything is having even a small WOW effect, yet at least.

@angryhacademic From having a read, I would definitely agree with this, seems like you've got a rough deal! Hope the increase in dose helps you 🤞 and good luck with whatever you decide to do re ivabradine.

I think as well this might indicate my dysautonomia is not on the mild end. I'm not sure how to classify severity but 70 bpm rise in HR on standing suggests something is clearly off... My COMPASS31 score is 30* (> 19 = mod to severe) hattrevaluationtools.eu/compass-31/

@darciejayne03 This was it before the gravy. All veggie and gluten/dairy free. Followed by sticky toffee pudding 😍

📣CHRISTMAS DINNER THREAD📣 As always, please post your Christmas dinner pics in the comments for my family to rate 😂

@rosethechemist How have I not heard about this?! Where can I find it? 🙂

The lessons in chemistry tv adaptation is great.

@robinfrisbie @alexandrite113 How are they doing without it?

@alexandrite113 @MissT_chem Fludrocortisone helped my kid. Took it for years now weaned off.

For weeks now I have been drinking 3000 mg of sodium a day + putting tons of salt on all my food. My #POTS is unchanged. (heart rate still spiking from 60s-70s to 120 BPM within 15 seconds of standing up) Why do I get my hopes up? Nothing has ever helped me except benzos.

@alexandrite113 I haven't tried those, midodrine and propranolol were the ones that made me worse, was scared to try fludro because of that! Hope you find something that helps.

@MissT_chem Have tried some (Mestinon and Pentoxifylline made me much worse) but haven’t tried fludrocortisone. Glad it helped you

@hannahlizteach So sorry to hear this. I didn't complete my ECT in the end and have moved onto something outside education. Appreciate now is probably not the right time, but happy to chat about looking for jobs outside education if you ever want.

@ParsonsPhysics Mind if I ask what you're planning on doing with your teacher pension? I can't decide what to do with mine!

@melindajodi Have a look here 🙂 #geo=1.06/49/12.6" target="_blank" rel="nofollow noopener">parkrun.org.uk/events/events/… Might be good to go along if you like running with people, I go to my local one when I can and it's fun 🙂

@MissT_chem thank you! how would i find out the local parkrun? sorry for all the questions i’m new 😂

long shot but any running clubs in the manchester city centre area? starting to get a bit lonely on these runs and unmotivated. think if i ran with a group once or twice a week it would help. want to ideally start training for a half marathon but would love some support. tia! x

@elle_carnitine @Morgane_fb Do they?! Apparently they're very rare but I think it's good to be aware of, I've had no side effects.

@MissT_chem @Morgane_fb Oh god!! And they sometimes persist after discontinuing the drug?!

What have been people’s experiences with Montelukast? How did you tolerate it? Did it help, how, how much?

@elle_carnitine @Morgane_fb Yes, I've always had very mild asthma but it really stepped up a notch after covid and nothing else helped. Important to be aware of the potential side effects though, I wasn't told about the black box warning when I started taking it (luckily I didn't get those side effects!)

@Morgane_fb @MissT_chem Oh wow, cool! And these were connected to Long covid?

@KellyJean72 I had a massive POTS flare after my flu jab, could it be that?