Dr Ahmed
Region: GB
Monday 05 October 2026 16:36:14 GMT
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Jessica Jean 🩷 :
I spoke to my GP about Mestinon. She contacted a CFSME clinic about it and they said they'd not recommend it as a side affect is sudden death 🥲
2026-10-09 03:42:08
16
ChristySisk :
Mest! I want everything you have!
2026-11-09 02:24:24
0
whimsy witch :
I'm on ivabradine for my pots
2026-10-05 22:46:49
13
ameliajaneway :
Now try get a gp to prescribe it
2026-10-05 20:22:11
250
Rivka :
I’m on it. It does very little for my fatigue. I had high hopes for it too.
2026-10-05 17:07:36
46
susiebluesyy :
Good luck trying to get a single doctor anywhere to prescribe!!!
2026-10-05 20:18:33
36
Greta🌸 Häkelt :
That medicine changed my life. It gave me my life back 🥰
2026-10-05 20:08:47
9
Love :
Again, used off brand, but Ivabradine made a huge difference in my POTS. Worked so well, after a couple of years I came off it and my POTS has remained fairly stable. Only came off it to take phenergan to help me stay asleep at night, again off brand 😂. I don’t think I take a medication for any off my issues for the purpose the medication was made
2026-10-06 06:28:01
25
Midwife & Mum of 4 ❤️ :
I have POTS and this medication made it so much worse. Literally couldn’t stand up at all whilst taking this. Everyone is different so may work for some but not all people with POTS.
2026-10-05 20:45:23
54
baglinbagguley :
No gp ever goes to the trouble of prescribing off license. I've asked multiple times for off licesnse products that are known to help with my chronic illnesses. They don't care
2026-10-05 17:05:11
71
Grace :
I got placed on Ivabradine and it's really helped change things for me! I'm naturally tacki with resting about 120bpm and movement would shoot me to 150bpm the Ivabradine has brought me down to 70bpm and only a slight increase to 80-90 depending on the exercise
2026-10-05 22:26:11
15
Kate 🇨🇦🍉 :
I am incredibly sensitive to medication side effects, and have been taking mestinon for about 5 years now, and it has improved my symptoms by about 40-50% with limited side effects.
2026-10-19 12:48:11
0
Zade | Books & Lifestyle :
the nhs doesn't give anything to us for me
2026-10-06 09:59:21
13
Claire :
I have EDS and POTS Mestinon made me feel like I was dying and it caused each muscle in my tongue to uncontrollably convulse and same with some in my face it was one of the worst feelings
2026-10-09 22:24:17
3
kalynpdx :
I saw this video yesterday about 30 minutes before I was leaving for a doctors appointment with my PCP about my POTS and ME getting significantly worse. I printed out the info on it and brought it with me and he looked over it and it’s in their system as being used off label for POTS so he prescribed it for me to try and said if I don’t have improvement from this I can try LDN next. I’m hoping there’s literally even a 5% improvement everything’s gotten so bad.
2026-10-07 11:10:41
9
Esme :
What do you mean we can use it off license. Have you ever tried to get an NHS GP to prescribe anything off license ?
2026-10-05 19:34:21
11
learningtosee :
In addition to helping my POTS at higher doses it also helps my gastroparisis, dysmotility, dry eyes and mouth, strength and breathing. It’s my favorite medication 💊
2026-10-06 20:20:44
18
CheemaPi :
Mest - POTS & ME here. Ivabradine isn't the answer for me.
2026-10-05 22:36:05
15
miss function :
also lol at off-licence... absolutely no GP I've ever come across is willing to go against nice guidelines ever. I've asked them... they refuse
2026-10-06 06:13:45
9
snowybaabaablacksheep :
It can have horrific stomach sides effects!!
2026-10-05 20:23:14
15
user1404656045808 :
Mest - would there be any issues with Ehlers Danlos ?
2026-10-05 22:22:21
9
DailyJamTina :
Does this help with high heart rate and low bp which isn’t pots bit still dizzy on standing up quickly?
2026-10-05 17:36:55
6
Kelly :
AHA! NOW i know why Mestinon keeps having manufacturing delays!! earlier this year I had to go to five different pharmacies to locate it 🙈😭 across a 3-4 month period it was terrifying rationing it because having MG, I can't even hold my head up without it 😅 I was the only person in my small town (once village) to take it, that time the pharmacist said 4 others were taking it for various things! I was shocked... no longer special! which local had my meds?! hopefully the brand has increased manufacturing to meet new demand as the shortage happened two years earlier as well. for now, I'm blaming you Doctor A! 🤣🤣🤣🤣
2026-10-06 06:32:36
6
Zia :
As someone with MG no one wants to be on mestinon and I’m doubtful it would be worth the side effects
2026-10-07 23:52:17
1
kyley.basstherapy :
They refused to actually diagnose POTS as I’m on ADHD meds but have told me to look at the POTS website, follow all recommendations for POTS and do what they’d suggest for people with POTS 🤦♀️
2026-10-07 12:48:50
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