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.

Bumping for you.

No expert but have they ruled out seizures?

I have no knowledge of this but the MN suggested threads below this are all "lupus" - so perhaps The Algorithm knows?!

Have you spoken to your gp about a referral to neurology?

I am on a waiting list for a neuro consultation which my gp has said is urgent so hoping it is asap.

Why on earth has your GP not referred you for further tests? You should be pushing for a proper diagnosis. I would suggest neurology to rule things out, but for sure you can't carry on like this. There will of course be a waiting list, but don't let anyone fob you off.

Good luck

How long do the episodes last? Do you have to do anything to help get yourself out of it, or does it just happen? E.g. drink of water, dark room?

Have you been prescribed Carbemazepine, or had a fasting glucose blood test?

Sorry, I was typing as you posted your update about being referred!

Also - do you remember the episodes? Are you able to talk through it?

Urgent to neurology can mean anything from 6 weeks to 19 months unfortunately depending on where you’re based. Also whether you’re flagged as “urgent” urgent - or just standard urgent. 🤔

id imagine it’s nerves though - as in synapses rather than anxiety.

Focal seizures? I would want them considered/ruled out.

Are these episodes witnessed and do you lose consciousness?

DH has an urgent nuero referral put in Aug, in Oct we were told the current waiting list is 80 weeks 😳

There’s no certain length. Some can be for 30 seconds to a minute, some will be 2 mins and then I’ll have 5 more throughout the day. I can go days without anything and then I’ll suddenly get a ‘feeling’ and know it’s about to happen. It’s awful.

The bruising and the hives.

Does the headache happen on both sides? Does it feel like it’s behind your eyes?

Have a look at “icepick” headaches and TACs to see if it sounds familiar.

I had icepick headaches for about four weeks at the start of my pregnancy and they were as you describe the head pain you’re having. Intense blinding debilitating stabbing that only lasts a relatively short time compared to other headaches 💐 x

Have you had a full blood count? I get the blood blisters (petechiae) I have ITP which is in laymans terms means low platelets in my blood because my body attacks them, before diagnosis i felt so ill, id definitely push for a full blood test, especially with the blood blisters

Your doctor should definitely be taking this more seriously and not putting you on one drug after another!

CombatBarbie that’s awful. DD(15) had an “urgent” referral last year and I thought 3 months was bad, we went Private but only shaved 2 weeks off, then got a cancellation and NHS came through first.

I hope you get an appointment soon.

I was coming here to suggest exactly the same.

I had a period of ice pick headaches after a viral infection and I've never experienced pain like it. Normal painkillers don't work with ice pick headaches, will make absolutely zero difference. They suddenly strike with no apparent trigger and only last a maximum of minutes. But the pain is unbelievable and used to literally floor me when they struck.

I was prescribed Gabapentin, but I believe Indomethacin is also prescribed for it.

No it’s a very specific pain from the top of my head down. Doesn’t happen every time.

Today I was just getting DD’s packed lunch bits and had a few seconds warning (oh fuck it’s happening) and had to put my basket down to get out so I could sit down and call my friend.

Have you had full bloods?

www.nhs.uk/conditions/mastocytosis/symptoms/

Could it be this?

You need bloods done. The bruising looks like purpura. Have you noticed you bleed easier?

Goodness me @stbrandonsboat that's fascinating.

What you describe sounds like my friend's seizures. Although the hives thing is a bit odd. I hope you get help soon OP

Just thought I would mention paraganglioma. It is quite scary to google , and I’m not at all suggesting it’s definitely that, but I had it undiagnosed for about a decade and had every single investigation going before it was found. It is extremely rare, so it is not likely, but the headaches and other symptoms sound similar.

The rash and hives aren’t generally associated though, although I wonder if they were there before you stayed medication or wether they could be a reaction to it?