What the Christ is this medical condition. Any drs/anyone she’d any light

[Ostryga]

in October I was sitting on the sofa reading the news when I had a stabbing pain in my brain and immediately was weak, shaking, pacing, twitching, trying not to lose consciousness and very unwell.

Went to hospital and was triaged and admitted with suspected brain bleed. Had ct and lumbar which came back clear.

Since then I’ve had similar episodes - sudden onset of pain (although sometimes no pain) and then feeling very out of it and shaky, unwell and nausea.

I’ve been to my dr approx 15 times since October for this and the meds I have tried so far are:

• Propranolol
• fluoxetine (weaning off after 6 weeks when it made it worse)
• diazepam
• pregabalin
• amitriptyline
• sumatriptan in case of migraine

I have hives all over my body and tiny blood blisters under my skin all the time.

I am at my wits end. I have tried everything for panic attacks, I cannot breathe myself or talk myself out of them. They come on with 30 seconds warning where I know it’s about to happen - and it can be anywhere, in bed, having breakfast, on the school run, just walking. I had one today whilst picking up bits for DD’s packed lunch tomorrow.

There was no trigger - no life stress more than being a single mum, no deaths or sudden changes in my life.

I’m trying everything I can but I feel like I’m being told it’s anxiety at every turn even when I’m taking all the medication I possibly can and it’s still happening.

Message from MNHQ at OP's request - please read OP's diagnosis update before posting.

Hi everyone. Thanks to all who've offered advice, support and suggestions.

The OP has asked us to flag up that she's now had a diagnosis so please do take a look at her most recent update before posting. We've also popped a note in your opening post, OP, and we hope that helps. Best of luck with everything.

It's such a relief to get a diagnosis. You can move forward now

Glad you have the diagnosis, OP. As I suspected per a previous post. It can take some getting used to, as can the medication (your doctor will have talked you through all that, I’m sure), but hopefully the type you have is the sort you can live with without even noticing (beyond the drugs). Are you willing to share which drug the doctor has prescribed? I have some experience, including with brain-health/intervention. The psychological impacts of this sort of diagnosis often aren’t talked about enough.

Thank you so much everyone! Honestly just getting a diagnosis (and not some panic-riddled loon making everything up like my GP thought!) has taken such a weight off my mind. The seizures were ruining my life and I feel so comforted knowing what they are and there is a treatment.

@Partyandbullshit I’m starting on Levetiracetam 250mg morning and night with a review after 4 weeks. Took a dose this morning and apart from feeling a bit knackered seems ok so far. Hope it stays that way!

Just sent you a DM.

So glad you've found out what it is, OP, and are getting a treatment plan sorted.

@Ostryga have PMed you x

@Partyandbullshit just messaged you x

I am so glad you have a diagnosis. And I hope the posters who were quick to suggest it was panic disorder reflect a bit more.

I just went through 5 years of being dismissed by GPs before finally getting a myasthenia gravis diagnosis. I am glad your battle wasn't as long as mine but I am still frustrated you were doubted

I could be a neurologist.... :) Fab she has a diagnosis

Hottotrot4 · 10/02/2023 09:07

This sounds really epileptic, how short they are, how they present. The rash could be a reaction. Make a pest of yourself at your GP/neurology! The only way of really knowing is an EEG.

Are the hives and blood blisters part of the epilepsy? I didnt know skin issues came with epilepsy.

I hope your quality of life improves now that you have a diagnosis and medication to manage your condition.

Not a doctor or anything but another lady had a thread about her teenage son who seemed to be suffering these exact symptoms. It’ll be under child’s health I think, may be worth getting in touch?

We are in awe!! I'm making a note of you for future reference. 😃
Sorry, I missed your post. ❤

So glad you have a diagnosis and feel really positive about it all going forward.

It sounded really unsettling and painful. It’s not a presentation of epilepsy I’ve come across, like many! I suffer with ice pick headaches, which make me jump so much, my ears ring afterwards.

Good luck with the meds!

Haha, just teasing adds doctor to CV

No, not at all. But she was given a lot of medication (some of it anticonvulsant) and they can have skin reactions as side effects.

Epilepsy is collapsing on the floor in some cases but it's a really broad term. It can present in a huge number of ways.... almost all of them really, really weird and unsettling.

But medication works in about 2/3 cases (I think).