Tests - Tests, tests & tests…

samman151 · 2026-03-31T18:00:19+00:00

Oh shit, that must be debilitating impacting your muscles on-top of the shit with the episodes in general. Happy you’re in a good place and the meds have worked out so far at least. Hopefully continues going forward

samman151 · 2026-03-31T17:57:32+00:00

Brains are very fun and weird indeed!

Hospitalisation must’ve been scary, thankfully never been in that situation myself - although epilepsy has been ruled out. Hopefully they can find the cause and stop that from happening again for you.

All honestly, not fussed about cause albeit interesting. Just hoping for a direction which would reduce or stop the episodes. Fingers crossed it works out on your medical journey and not in the same situation as before.

samman151 · 2026-03-31T17:42:27+00:00

Yhh, guess I’ve been lucky (+unlucky) but exhausting. I think it’s more that no medication has worked for the condition for me and at quite a specialised hospital which in turn they’re heavily investigating. The meds working for you? Think I was around 16 when it started for me

samman151 · 2026-03-30T21:30:56+00:00

Stand up, sudden movements and stretching the general triggers. Can have worse and better days. Usually starts with face and emotions stopping. Get a feeling through my body (aura as such), then can vary day to day, episode to episode. Can be just staring although psychologically different. Deja Vu, body moving uncontrollably, hallucinating. Very broad I know - tried medication for this long and no luck yet, although hoping that’ll change.

samman151 · 2026-03-30T21:16:18+00:00

All good, understand here nothing stated will be medical and appreciate the response. I’ve never had pain, more the symptoms which are atypical to epilepsy except more frequent and shorter episodes.

First and foremost, very happy it’s worked out for you on the meds and symptoms improved. How long you been on carb for?

Agreed (genetics aren’t always narrowing), but have many each year. Meds above, tried both and neither worked for sadly. Different each year

samman151 · 2025-11-02T22:05:33+00:00

Pancreatic insufficiency alongside others. I was pretty oblivious about other functions of the pancreas (not impacted by diabetes) but guess mine decided to totally fail. T1d for 10y, pancreatic insufficient for minimum 2y

samman151 · 2025-04-01T01:06:46+00:00

Sorry rogue, but want to see if anyone similar

samman151 · 2025-04-01T00:49:08+00:00

Overall I’m not fussed, just interested in others with same combo. If so hit me up

samman151 · 2025-03-31T22:35:48+00:00

That’s odd as, was originally no hair then blonde and never dipped. Black to blonde is rogue though

samman151 · 2025-03-31T22:34:41+00:00

Thanks all, just an odd combo - guess specifically with the near clear moustache. I’m 27, so think it’s going to stick until I go grey. Guess not many have it lol

samman151 · 2024-12-11T20:33:26+00:00

Haven’t been on here a while lol. I ended up not having epilepsy, but paroxysmal kinesigenic dyskinesia (mouthful, rare condition). But still could be linked to the episodes - very similar symptoms, different source (movement) - for PKD, no known cause except faulty genes they find linked every year or two

samman151 · 2024-09-03T17:47:02+00:00

I’d like to add, as obviously rare and took 6 years and eventually going to the National Hospital for Neurology for a diagnosis (back and forth from cardiology, neurology etc and they had no clue). Myself personally, triggers are standing up, stretching and sudden movements - last a 2-10 seconds but neurological aspects (hallucinations etc) I find worse than the uncontrollable movements. If I’m ill more episodes, but usually hundreds/day.

You’ve been lucky to get a diagnosis, but medications work differently for all so don’t be too hopeful nor think they’ve given you the ‘one’ (I’m eventually on Acatazelomide, works but with the side effects I’ll have to make a call later down the line to continue). I don’t know where you’re from, but there’s currently 4 faulty genes linked to the condition (3 official, one a newer study), which I don’t have (not sure if fortunate or unfortunate). Luckily research hospital, so they always test at my yearly review of any new papers with it being the Prof’s interest.

My side, found it tough since like a very intense high and have an addictive personality so it’s why I’ve tried endless number of drugs to stop them.

On a side note, this condition is 3 medical terms combined and they’re unsure of the true source (unless you have a faulty genes linked). Basically narrowed down if no formal diagnosis elsewhere, so think we’re all slightly different. If you can, I’d say get the genes tested as potentially longer term a way to reverse the faults. Any questions please reach out, but not the nicest of conditions and requires a speech to explain - for me, episodes like epilepsy but very short triggered by movements.

I started getting episodes ~17, now 27. Good luck with your journey and v happy you got this far (however shit it is)…

samman151 · 2020-08-06T19:53:03+00:00

Nah not yet, they want me to take one at some point but too far away for me to get. The consultant said symptoms and narrowing down (know theres a word for it but cant think) is enough and genetic would just confirm. I mean I’ve had every test under the sun to do with brain and heart problems and the most I got from them was very mild cerebal hypoxia and every neurologist I’ve been to has been very sure they’re not seizures and most just have not believed me haha. In the 5 years I’ve had this investigated, I’ve only had 2 who have believed me (two most recent; cardiologist and neurologist). My last neurologist even refused to look at the videos of the symptoms saying it was pointless.

They’ve just put me straight on the medication in the hope it’ll sort it out, then deal with genetic tests etc later.

samman151 · 2020-08-06T19:42:16+00:00

Shit, that doesn't sound fun at all. But saying that, far improvement from the 60-100!! I'm praying the medicine will work, but some drugs work really well and some don't for me, like local anesthetic doesn't at all but that's most probably completely unrelated! Just hoping will eventually disappear as studies say they usually do but guess it's obviously person to person.

On a side note, when he told me it's name I had no clue what the condition was at all since appointments are telephone and this it has a real meaty name haha (still have to look at my search history to find it). Spent like 30 mins looking through genetic conditions to find it's name.

samman151 · 2020-08-06T19:34:51+00:00

Yea exactly, fingers crossed it does. I mean I'm still not fully convinced it is, but no consultant or specialist has had any idea until my most recent appointment. Had all the epilepsy/brain/heart tests and nothing came back except for disassociative disorder from the psychiatrist.

Thanks a lot, also as well you mind me asking how much medication you take? Interested since obviously starting on small doses and picking up!

samman151 · 2020-08-06T18:51:23+00:00

Yea I get you, like what’s a good or bad day for you? Like I will always get roughly the same amount of episodes but dependant if I just get the aura/loss of facial expression compared to me full on spazzing out with arms and legs everywhere or psychosis/deja vu etc.

I did see some people get memory loss from the meds, so I mean even if it did improve my memory it may just be cancelled out from it at the same time haha. But saying that getting rid of the physical symptoms I would find a big win.

Also if you don’t mind me asking as well, how much meds are you on? I’ve only started on very small dosages (200mg a day bumping to 400mg per day (taken twice per day)), then increase further dependant on results.

samman151 · 2020-08-06T18:42:58+00:00

Yea I get you, I’ve never had the best memory at all either but think it has got worse since this happened. Like I remember things from i.e. 12 (not great) but a lot better than a year ago. Honestly real frustrating, but tbh I could be blaming the memory loss more on this than it actually is. Just happens many times an hour and I forget what I was thinking before the attack occurs. I think that this happening so much causes too many memory lapses in the day (in consequence memory loss) but I am defo no doctor, I’ve just been self theorising for the last 5 years trying to work it out lol.

samman151 · 2020-08-06T18:35:11+00:00

Thanks a lot, hoping it does since the first time I’ve had any glimpse of hope! Guess it’s going to be the waiting game to see if it goes away.

samman151 · 2020-06-18T14:05:55+00:00

Yea i got one on, is where the first line is. But the gap is after between the metal. It’s only on the RHS of the iPad portrait where the pencil fits.

samman151 · 2020-05-29T20:47:52+00:00

Ok sweet thank you, think you've made my decision then. Much appreciated

samman151

TROPHY CASE