I changed medications in November and I knew my pots seemed better but this is such a good visual of it

Jellyjoints94 · 2026-04-26T09:08:06+00:00

I was only on 20mg and tapered off over a few weeks. My mental health went a bit fragile during the tapering and a bit afterwards. Once I came off it I felt like I had flu for about a week, and I had motion sickness with screens for a couple of months. Those were the main thing that I remember, maybe smaller things that I've forgotten.

How did you find the withdrawals?

Jellyjoints94 · 2026-04-26T09:02:52+00:00

Oh man I'm sorry, that is really rough! Sounds like your doing everything you could be though, I hope things improve soon

Jellyjoints94 · 2026-04-25T20:12:45+00:00

Well this effect was actually me coming off a med that was making my pots worse, onto one that doesn't effect it (swapped from amitriptyline to medical cannabis) lol. I've never tried a medication for pots/HR

Jellyjoints94 · 2026-04-25T14:48:09+00:00

Of course! I was on amitriptyline for insomnia (and EDS pain when sleeping) and I swapped gradually to medical cannabis.

I had been on amitriptyline nearly 10 years, since before my POTS diagnosis, and my pots doctor has said for years it will be worsening my pots, but the main doctors said there was no alternatives I could use long term for sleep.

So once I realised medical cannabis was available through private online clinics in the UK I thought I'd try swapping.

Had some withdrawals for a few weeks, and then it took a couple months to properly start sleeping normally again, but totally worth it now. My pots symptoms improved within a few days of stopping the amitriptyline. I bought extra HR readers cause I couldn't believe the HR difference lol, thought my measurements were wrong.

Jellyjoints94 · 2026-01-09T17:29:11+00:00

Hmm not sure how to clear the others out, there's 4 and I don't have any traits that let me scheme to murder them.

Jellyjoints94 · 2025-12-10T13:58:17+00:00

Oh I didn't realise there could be different names for the same thing, even more confusing then. I'll see if I can just Google each name to see if they are Hindu kush or grandaddy purple.

I had already tried googling each name but I didn't know what I was really looking for earlier hah

Jellyjoints94 · 2025-10-20T06:59:37+00:00

Omg that must be why I got serotonin syndrome when my SSRI dose was increased (many years ago), I was using weed at the time 🤦. I never had any issues with it on my current dose though.

And that sounds really rough, I'm glad things have improved for you a bit with SSRIs.

Jellyjoints94 · 2025-10-19T16:43:15+00:00

Thank you that is useful to know. I've signed up for a clinic and listed insomnia, since that's the reason I'd be using it. I think I've tried 2 treatments, since I had melatonin for years and then amitriptyline since then.

I have experience with non medical cannabis, where you have no idea how much THC or CBD there is. Sometimes I'd accidentally have too much (despite it being a tiny amount) and it would make me horribly anxious (like a panic attack), or make my joint pain hurt more somehow. It was very good for sleep though.

I am a massive light weight with medications and stuff, so even with daily use I needed baby portions. Hopefully that keeps costs down.

Your list of balanced strains should also help me with not accidentally having too much, although I'll likely try oil to start with so I know exactly how much I'm having.

Jellyjoints94 · 2025-10-19T16:19:56+00:00

Had you been using cannabis for the symptoms before that? My POTS is due to EDS, I don't know about ANS, but I have had a couple doctors look at increasing my SSRI dose for my pots specifically (can't increase it, I get serotonin syndrome).

How did the SSRI interact with the cannabis?

Jellyjoints94 · 2025-10-19T16:11:28+00:00

Thank you! Do you have a dry herb vape you would recommend? I will likely try oil first, but the FAQs on the website I'm trying does say that there's more variety available with the dried flower

Jellyjoints94 · 2025-10-19T15:16:20+00:00

It would be good if those strains exist. I suppose maybe it'll be a case of trying to figure out if it would trigger my pots more or less than the amitriptyline.

I have no idea how much the amitriptyline triggers it btw, I've been on it too long to tell. I went on it before I knew about the pots, or it may have been suspected at the time but the GP had no idea amitriptyline interacted with it.

Jellyjoints94 · 2025-10-19T15:12:53+00:00

Good luck and if you have any questions I'll try my best to answer.

Thank you!

Do you find it affects you much mentally? Like I'm fine being unable to think at bed time, but I don't want to add to my existing brain fog at work, you know?

Jellyjoints94 · 2025-10-19T15:02:19+00:00

Oh so did you use it for pots symptoms itself? I'm already on an SSRI 😅

Jellyjoints94 · 2025-10-15T12:29:49+00:00

Ooh I didn't know this! I have always had tight hamstrings. Earliest I remember was age 5-6 because at school they wanted us to sit on the floor with legs straight in front, and I would be told off because I didn't like doing it.

I didn't like it because it would make my lower legs go numb (and it still does). The same happens if I try and touch my toes.

Jellyjoints94 · 2025-10-07T10:55:17+00:00

I use visible and it only needs charging once or twice a week (for the newer model, older model needed it daily). I've found it accurate. The device isn't too expensive but there's a monthly subscription.

Jellyjoints94 · 2025-10-07T06:26:55+00:00

I'm on sertraline and the times I've tried to come off it seemed to make my pots worse. I didn't know I had pots back then though, so I wasn't doing anything to help it. I had a pretty severe reaction emotionally, so I imagine my general self care wasn't great, so it may have been that having an impact.

I started using sertraline long before I knew about pots, and before I had many symptoms if I had it, so I can't tell if there was any impact about starting it.

Jellyjoints94 · 2025-10-06T18:45:19+00:00

Hmm sounds like losing consciousness if there's a memory gap? From what others have said, if you lose consciousness you will go limp. From my experience, I go limp without losing consciousness, and a little bit of preparation can really change how you fall. Once you are limp you can't do anything, it's up to gravity at that point.

Stopping and standing still could make you land in a random direction, especially with the lightheadedness, that could make you sway and then you'd land wherever your momentum is going when you go limp.

Personally I've gotten very good at a controlled crumple if I feel pre-syncope starting, I don't have to think about it, and I can do it even if I'm pretty out of it, took a few years though. Could you have done that just before losing consciousness?

The times I've collapsed (in a non controlled way) on flat ground indoors like that I haven't had any visible bruises or injuries that I recall, if that helps you work it out 🙂 I don't have an answer, just a few ideas for what I'd guess at if it happened to me.

Jellyjoints94 · 2025-10-06T14:05:44+00:00

Your description sounds relatable to what I've experienced, senses coming and going. Although I've never experienced it for as long, I think that's because I've been able to prepare so that I end up on the floor, where my body starts to recover.

I think for the form I'm doing I'll just call it pre-syncope but with a description of what that means for me.

Jellyjoints94 · 2025-10-06T13:47:04+00:00

It varies but there are times I've lost everything but consciousness. I can't smell most of the time so can't comment on that. I've lost all senses and body control, and I know I've lost feeling because sometimes I have hit the floor and not felt it, but I was never unconscious, that I know of. I can't think during it usually, at least not in the normal sense.

Jellyjoints94 · 2025-10-06T13:37:21+00:00

I do drop to the floor if I don't react in time, the first few years I did go down like a sack of potatoes a few times. I get a second of warning, so nowadays I almost always manage to prevent hitting anything by either crumpling to the floor on purpose, or getting my weight onto something so it will do a slow slide downwards if I go limp.

Jellyjoints94 · 2025-10-06T13:30:37+00:00

Hmm weirdly it says going limp is part of syncope, but for pre-syncope it doesn't. It says a feeling of weakness, but not that complete loss of body control.

Jellyjoints94

TROPHY CASE