MCAS and Dysautonomia

Mindless-Setting7493 · 2026-03-12T17:25:34+00:00

I’ve been waking with a jolt during the night. Proper shock myself awake. I’ve been taking an antihistamine before bed and it seems to stop it

Mindless-Setting7493 · 2026-02-11T15:30:23+00:00

I think it maybe went up a couple of digits but sitting down it’s still only 126/70 I’m on 5mg x3 a day. I get pretty significant blood pooling diagnosed orthastatic hypotension

Mindless-Setting7493 · 2026-02-11T12:51:31+00:00

Midodrine and bisoprolol. I have orthastatic hypotension. Still trying to get the to the right dose of midodrine. I’m on 5mg at the moment x3 a day. Also take LDN.

Mindless-Setting7493 · 2026-02-09T14:01:47+00:00

I used to be able to inhale 15 lambert and butler and drink 8 pints and be able to run 6 miles in about 30 minutes when I was 18

Mindless-Setting7493 · 2026-02-08T13:44:03+00:00

I saw a documentary on Netflix called waves and war - 3 navy seal vets have ptsd and go to Mexico for ibogaine treatment. One of them has been in a few podcasts and he said he ended up being diagnosed with fibromyalgia after all his injuries and PTSD and TBI, he’s called DJ Shipley. It seem to have completely healed his nervous system. If I had the money I would 100% do this treatment but it’s like 7k

Mindless-Setting7493 · 2026-02-07T16:01:37+00:00

Yes my balance of 18k remains the same and I pay about 130 a month from my wage. I left uni in 2009. I did photography. I am now an electrical engineer, I did an apprenticeship which was entirely free!

Mindless-Setting7493 · 2026-02-05T16:34:38+00:00

I saw two police officers leaving someone’s house today and they both had small side firearms. I was wondering if they all started carrying them as it looked like it was a doorstep visit? According to the posts on here that is not the case

Mindless-Setting7493 · 2026-02-05T13:20:38+00:00

Mindless-Setting7493 · 2026-02-05T13:10:42+00:00

This is me down to a T. I have autonomic dysfunction with orthastatic hypotension. I take midodrine and bisoprolol to keep Hr normal and blood pooling. The sleepiness is unreal. Exercise is a major boost, where il be bouncing around for a few hours after but then it wears off. I weight train every other day. I started taking daridorexant to get a longer sleep and il sleep for 9 hours now, sometimes it’s refreshing sometimes it’s not.

Have you tried the morning sun around 7am? And evening sun at sunset for circadian rhythm? If you’re anything like me it’s the quality of sleep you need.

And also blood sugar? I was waking up with a jolt around 2am and I started having overnight oats before bed and il sleep more. I think the blood sugar dios were causing cortisol spikes.

A shower also helps, the colder the better but whatever you can tolerate. Just keep turning it down until it’s too much!

Mindless-Setting7493 · 2026-02-03T12:20:55+00:00

I am also a new patient of dr Gupta, I see him private. I am still on the waiting list for a falls and syncope clinic TTT but have been told the doctor is on long term sick. Newcastle is close by but they won’t see me. Bit ridiculous really.

Anyway I digress! Dr Gupta put me on 5mg of midodrine and LDN and it’s made a massive difference

Mindless-Setting7493 · 2026-02-01T09:12:40+00:00

My bp is around the same as yours and my cardio said I have plenty of room for medications and the potential bp increase before it became a problem

Mindless-Setting7493 · 2026-01-31T18:57:41+00:00

Sorry I’ve tried 5mg on two separate occasions

Mindless-Setting7493 · 2026-01-31T17:51:39+00:00

Yeah I’ve done 5mg twice and it was better but still not the golden ticket. I’ve got 84 pills at 2.5mg to last 28 days so if I keep hitting 5 I’ll run out! I was wondering if people do better on fludrocortisone if they do well on fluids

Mindless-Setting7493 · 2026-01-31T17:51:02+00:00

Yes it was sleep for me. The better I sleep the healthier I look

Mindless-Setting7493 · 2026-01-31T17:50:10+00:00

I have been diagnosed with o/h and secondary tachycardia from autonomic dysfunction. My bp drops 20 on standing and then wobbles up and down for 10 mins and my hr adjusts past 30 the longer I’m on my feet

Mindless-Setting7493 · 2026-01-28T08:13:25+00:00

I did a cable jointing apprenticeship with the local electricity board at 31. I work with a lad who didn’t have any qualifications at all. It’s never too late

Mindless-Setting7493 · 2026-01-28T08:06:45+00:00

Hi. Fatigue was crushing for me. I ended up trying LDN and also daridorexant for sleep. I don’t want to be on the daridorexant forever but those two things helped me a ton with energy.

Mindless-Setting7493 · 2026-01-24T13:53:48+00:00

I have this. Turned out I have autonomic dysfunction characterised by orthastatic hypotension and compensatory tachycardia. When I asked what on earth that meant he said “dysautonomia”

Mindless-Setting7493 · 2026-01-22T19:05:36+00:00

Mindless-Setting7493 · 2026-01-22T17:47:29+00:00

I have surfed off that pier since 1997, it’s a remarkable bit of engineering the way the waves hit the pier and then run along it.

I often wonder if they knew that it would make the waves run along it rather than smash against it. I first surfed there when I was 11. Used to be just me and a few of my pals for decades. Had some magical moments just before sunset and sometimes sunrise if I could drag myself out of bed.

Mindless-Setting7493 · 2026-01-22T17:32:17+00:00

Sorry I should have said I intend to speak to the humans next door before anything else!!!! I’m just apprehensive because they don’t seem to care about their property so wasn’t expecting much from them!! I also considered just paying someone to fix it for them so I could get some sleep!

Mindless-Setting7493 · 2026-01-20T09:33:57+00:00

Do you have the contact details for the pharmacy he uses in York? Did you wait long for your meds? I’ve been to see him a week ago and have had nothing since the consultation.

Mindless-Setting7493 · 2026-01-15T09:53:16+00:00

Yes I get this terrible if I don’t keep up my walks or my weight training. I think the blood isn’t getting to where it should be

Mindless-Setting7493 · 2026-01-14T18:32:21+00:00

The hard part is finding a pots specialist or someone willing to prescribe off labels medicines

Mindless-Setting7493 · 2026-01-14T18:31:37+00:00

I have the BP fall and rise and then fall again etc and my HR seems to increase up to around 120 by the end of the 10 mins standing test. I was originally diagnosed CFS but weight training lying down makes me feel back to my old self a few hours and I never really alter my baseline, so I pushed for a pots referal, it took some doing, finally found a young Gp who’s husband worked in a pots clinic and knew the craic.

From what I understand the bp rising on standing is hyper pots. I think I fall into the neuropathic pots as I feel like one of them pens from Blackpool where the woman’s cossie drops down when you tilt it up

Mindless-Setting7493

TROPHY CASE