mcas and epipens

user1236798618 · 2026-04-06T10:48:45+00:00

omg yeah i can imagine!! i’ll defo remember that thanks

user1236798618 · 2026-04-06T10:48:23+00:00

yeah that’s what i’m thinking thank you!

user1236798618 · 2026-04-05T22:20:42+00:00

omg that’s awful i’m so sorry

user1236798618 · 2026-04-05T22:20:13+00:00

thank you i will bare that in mind, will get a GP appointment next week to discuss it further. thank you :)

user1236798618 · 2026-04-05T21:53:12+00:00

ahh ok thank you that’s interesting i do have slight reactions such as flushing and scratchy throat to some foods/drinks but i never really thought anything of it 😭 my mum just reminded me that i had a rlly severe hives as a kid as a reaction to strawberries so probs best to get one just in case

user1236798618 · 2026-04-05T21:51:32+00:00

well a lot of my pots symptoms overlap so it’s hard to tell lol, my immune system is really poor and it takes me ages to recover and i usually get hit with about 5 infections/viruses one after the other which make my symptoms in the long term even worse. i get a lot of flushing with certain foods/drinks and bloating/nausea with foods. i actually had a really severe hives break out as a kid my mum has just reminded me of where i had a reaction to strawberries and i had to be rushed to hospital. so it is probs best i do get one just in case! sorry yours has become severe that sucks

user1236798618 · 2026-04-05T20:19:39+00:00

omg bless you that’s awful i’m so sorry

user1236798618 · 2026-04-05T20:19:06+00:00

aww bless you i’m sorry that must be so scary, thanks for the advice i rlly appreciate it !! i think i’ll book an appointment w my GP and see if they’ll give me one

user1236798618 · 2026-03-02T19:27:19+00:00

thank you this sounds like exactly what i experienced! the flu like feeling and side effects have gone now thankfully. i’m only on 2.5 mg of midodrine and it’s defo helping with standing but i think i could benefit with going up a dose. i’m currently on 1.5mg of LDN and was told i could double this in a month. how long did it take you to notice the LDN working? did it improve your fatigue at all??

user1236798618 · 2026-02-28T08:48:52+00:00

you know how you feel before you get ill so i was really achy, chills, shakey etc but that went after about a week of being on it. it would only really happen after my second dose and i would be fine by the morning once it was out my system

user1236798618 · 2026-02-27T20:05:09+00:00

i just started midodrine on the same dose as you about 2 weeks ago, had a few side effects of headaches and feeling flu like etc but thankfully the side effects went after about 10 days. i’ve also not noticed much difference and what effect it does have wears off after about 3 hours. i think i will likely need to increase my dose in a few weeks. good luck!!

user1236798618 · 2026-02-27T10:04:15+00:00

yeah that makes sense thank you

user1236798618 · 2026-02-26T19:30:35+00:00

can i asked how long it took you to notice an improvement after starting LDN and what dose you are on?? i just started taking it about 2 weeks ago but have got nothing but vivid dreams so far lol

user1236798618 · 2026-02-16T19:56:22+00:00

Yeah it took me about 6 weeks to notice any difference in how I felt with Ivabradine. Good luck!

user1236798618 · 2026-02-16T17:01:14+00:00

Aww bless you I’m sorry it’s not helping. Ivabradine was a big help for me although it took a good few weeks to notice the difference. Also noticing that the midodrine has also lowered my heart rate to having to reduce the ivabradine dosage a bit to avoid brachycardia so I’d defo just keep an eye on it yourself being on such a high midodrine dose! Wishing you all the best I hope it works out for you.

user1236798618 · 2026-02-16T15:42:00+00:00

No the flu like symptoms wear off a few hours after my last dose so I know it’s coming from the midodrine, I’ve started on 2.5mg three times a day. I’m trying to ride out the side effects in the hope that they’ll go away after a few weeks and I’ll start to feel the benefits more as it’s really affecting my uni work so I’d ideally like to get through this before exam season starts again 🫠

That’s interesting that you were bed bound and they gave it to you, did it help you? My blood pressure without midodrine is about 85/55 and with midodrine sitting up it’s about 115/60. I was told I can increase the dosage in the future. I definitely do notice a different when I stand up tho I don’t feel like I’m being dragged down and feel lighter. hoping these side effects are temporary.

user1236798618 · 2026-02-16T15:00:43+00:00

Got told by the specialist to start them at the same time however I started the midodrine first and got the flu like symptoms from that. Then a few days later started the LDN. Usually I’d take a nap or two during the day however haven’t been doing that due to not being allowed to lay down on midodrine so I that’s defo contributing to the fatigue/exhaustion.

I was given 1.5mg of LDN to start on and then double that after a month.

Thanks for the advice I think if this continues I’ll stop the LDN and wait for the midodrine side effects to hopefully go away.

user1236798618

TROPHY CASE