Catatonia or a strange kind of seizure?

[Whoneedssleep22]

I’m not sure where to start. I’ll just start with what’s happened the last 2 weeks I think.
A couple of weeks ago, I experienced racing heart, pins and needles on scalp and one arm, and an eyelid that seemed droopy, and pupils were different sizes, saw a nurse at my GP surgery that evening who said it is probably anxiety, possibly cause my increase in medication. Which I accepted and may very well be the case!
then on Saturday, at lunchtime I had pins and needles on my scalp, and then felt like my breathing and pulse was slower, my breathing was very very slow. Then after that it was like being in a kind of trance, staring into space, unable to move, just stood in the same position for hours, but I was conscious. It was hard to respond to anyone, really delayed, and when I did respond my voice was strange.
I had food in the oven for the DC, and it took over an hour just to manage to get beige freezer food on a tray and in the oven, then when it was time to get it out I just couldn’t, I was frozen, I kept telling myself to just get it out, but my body just wasn’t doing what I wanted. I eventually got it out, so it was obviously possible to do it! I’ve got takeaways since then. Six hours later I was able to function enough to just move, and when I saw myself in the mirror my pupils were massive and my skin was bright red.
spoke to out of hours docs a few hours after it happened, and she just said that seizures don’t last that long, so what was it then? Had an awful flavour in my mouth too after, can’t describe the taste but was so strong. I have recently had a cough though, so could have been from that.
yesterady, pins and needles, strange hallucination type things, kept feeling things on my face that weren’t there:
I don’t know if I should ask the doctor about it or if they’ll just think I’m anxious! In between all of this in the last couple of weeks I’ve just been very confused most of the time with periods of normality, I feel normal now. But earlier today and a lot of the time it’s been hard to formulate sentences and speak. I’ve spent most of the last 2 weeks feeling like I’m in some kind of daze, it’s like being in a trance at times and I can’t pull myself out of it! And lots of anxiety. Not been able to go to work in over a week, in fact I can’t even leave the house.

oh I get a completely flat effect/feeling when it starts, it’s horrible. So strange.
for context, I’ve recently started a new medication that can lower seizure threshold, but I’ve also just stopped 2 others, and the ones I stopped are pregabalin and lamotrogine, which are anti epileptics, although I’m not epileptic. Which is what is making me wonder.
a mental health professional said it could be catatonia, but I’m not sure it’s like that after looking it up, but obviously I don’t know for sure.
I had an another episode around 5 weeks ago that was similar but much more extreme, but I don’t want to make this longer than it already is! (Visual distortions, whispers, deja vu, flushing, tingling, dilated pupils… was sent to a&e by nhs 121 but couldn’t stay after triage as I was too paranoid to stay)

Spent a lot of time recently (most) feeling like I’m frozen in one place, I can just stand for hours, and I’m just staring and just can’t pull myself out of it. It will be something simple like putting the kettle on, but I’ll keep stopping part way to do it, then try again when I come round, and then again, again etc. it’s frustrating.
Oh yes! And the reason for starting this post… this morning, my upper lip on the left kept going completely numb, but it only lasted about 15 minutes so ignored it.

It might just be the change of medication in which case the first few weeks will be the hardest and symptoms should ease.

this might be a possibility www.sth.nhs.uk/clientfiles/File/pd3922_NonEpilepticSeizures.pdf

personally I’d go to the Gp and explain, also ask for full blood tests including b12 which can cause slow brain, tingling and so on www.b12deficiency.info/signs-and-symptoms/

hopefully in another couple of weeks your body will have adjusted to medication changes.

That could be the case!
it’s not a medication that builds up on your system over time though.

Looked back at what it was like when I first started it over a year ago, and found these. I’d forgot exactly what it was like. Since these posts I found it hadn’t been like that, but I had been on lamotrogine alongside it.
Maybe I just don’t tolerate it well.
GP said I shouldn’t just come of it though, need to reduce, so I’m on half dose now, but no better, in fact it gets worse every day. And I’m fine in the morning, seems to only be after the medication has been in my body for a few hours. It gets worse as the day goes on.
It’s probably nothing, feels very strange though.

oh and I stopped taking it in feb 2021 and started again in November 21.
must just not be for me!

I restarted it again a couple of weeks ago, but I had been taking it since January this year till 2 months ago, with no problems, but I was on lamotrogine at the same time.

Had some similar experience to what you have written. It turned out to be undiagnosed thyroid. Yes get bloods checked

Oh, and just to clarify, I started 2 week ago, after trying it about 6 ish weeks ago, but when I saw CPN, she told me I that I had to stop taking it because of how I was on it. but the prescription still got issued this month, so not sure what happened there.

@PaulaTrilloe interesting, do I just ask my GP?

What's the new medication @Whoneedssleep22 ?

@AltitudeCheck it’s Elvanse (lisdexamphetamine)

I really dislike how health professionals tell you it's 'anxiety' and are so unhelpful! What's the use of all that medical training if that's all they can come up with!

OP my feeling is that if it's occurring a few hours after taking a particular medication then it could be a reaction to that medication, or an excipient in the medication.

I think it should be taken seriously. Anxiety does not explain what is happening. I would push for more tests (B12 test is a good idea as one PP suggested). Hope it can be resolved!

If GPs etc try to push the ‘it’s anxiety’ on you, it can be helpful to remind them that a mental health diagnosis relies on ruling out physical concerns first. Psychiatrists often refer patients for blood tests or various scans to rule out the psychiatric symptoms being caused by deficiencies or physical injury etc. I would definitely push to get it checked. Really hope it’s sorted for you soon, OP, sounds a horrible experience.

Does the drooping eyelid and change in pupil size happen every time?

If so I’d possibly ask for an MRI as this can be an indication of Horner’s Syndrome.

Sounds a stroke or something to me…
or if it is psychological could it be dissociation? Do grounding techniques help?

The enlarged pupils are what I'd be focussing on for investigation.

I know you haven't mentioned headache, but not all migraines involve a headache. I would ask for that to be looked into too. Stress and anxiety are a common factor in migraines.

The other thing it could be is, and I'm sorry but I can't remember the name properly, something like global anxiety disorder. Happened to a friend of mine a couple of times. Episodes where she appeared to not know what was going on, speech was odd, etc - stroke was ruled out but symptoms are similar.

Many of the things you've described are listed as side effects of the medication you are taking: altered sensations, anxiety, palpitations, hallucinations, taste changes, dilated pupils.

I would speak to the person managing this medication/ condition. They may advise you to continue, side effects often decrease with time or they may advise a dose reduction or stopping - but do speak to them before stopping.

You said a CPN had advised stopping it but your prescription was still issued. I would speak to the CPN or GP to see if there is a recent letter on your record saying to stop it. Sometimes the GP / Pharmacy will prepare send / prepare a prescription a little in advance and it may have already been 'in the system' before that letter was sent/ received / actioned.

It very well could be anxiety.
yesterday I just stuck a lap top in front of me to film for the entire time I felt that way, and one pupil was dilated and was going bigger and smaller. My eyes would periodically roll upwards slowly a couple of times while blinking in succession and I’d stop what I were saying, then restart the sentence and my breathing would go heavier. My speech sounded like forced slow speech, as if I were catching my breath. Some staring into. And my breathing was slow and looked hard to breathe.
oh and my lips looked slightly blue.
I looked completely dazed the whole time. And I don’t even remember everything that was recorded.
it always seem to start with slow breathing and a sense of complete calm and bluntness, with a bit of tingling on scalp or hand.
Not ruling out anxiety though. I know it can express itself in strange ways!
when I get the pins and needles thing I get like a cramp in my hand or foot on the left, it’s not a convulsion or anything, just a minor sensation of cramp. Maybe I’m overthinking it all.
Not took the medication today anyway.

Reason I haven’t took it today is that I need to go out, and I can do without appearing like a zombie!

And to whoever asked, no the droopy eyelid was just the 1 time.

hypothetically speaking, if I was to see someone about suspected seizures, who would I go to? And when?
I don’t know what to do. Especially because it may not even be seizures. I don’t want to look stupid!

@WeAreTheHeroes I haven’t had any headaches, but I did have migraines as a teenager actually! Very painful. They came with an aura of zig zag lines of light though.
And my DS had some episodes which were put down to something called confusional migraines, he has also had a couple of seizures too as a young child.

Did you taper or just stop the meds? It does sound quite catatonic but I would imagine Is due to meds changes. Catatonia can go with very high anxiety. It sounds horrible whatever it is but will hopefully be transient once meds are sorted.

Neurologist for epilepsy/seizures. Although first they would probably just do an EEG referral from GP.