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.

I agree with the posters above that you need blood tests fairly urgently - I'd be concerned about haematological or rheumatological cause such vasculitis.

Are you sure it's not shingles? Those spots look to be in a line.

I have just had shingles and got a horrible head pain with it and shingles rash on the face.

It is very painful, a burning sort of pain and on one side of the body usually. Infected nerves

@stbrandonsboat a friends wife has this and sounds very similar to what OP is describing

Can you describe in more detail exactly what happens? What the warning feeling is like, exactly where the pain is, what other symptoms you get, and how it wears off?

If somebody was watching you, what would they see? E.g. are you pale, lying down, pacing around, talking gibberish?

Also did the bruising and rash start at a similar time? Do they seem connected or might it be a coincidence?

Mast Cell. MCAS

it just comes on. I don’t know how to describe it. I get a feeling knowing it’s going to happen and then it hits.

If someone watched I’d be stressed and agitated then pacing and sweating and trying to get somewhere safe.

When it happens I shake and can’t talk/eat/communicate etc for a while.

I don't want to make you even more anxious, but could it be meningitis with those purple skin spots?
This must be so scary, I hope you get some help soon xxx

Another one who was going to suggest mast cell activation issues. Poor you, op, it sounds absolutely dreadful.

It sounds like focal seizures and the knowledge you have of it about to happen is the aura or halo effect - I think the hives are unrelated, a bit of a red herring and you need a CT.

No expert but happy to offer a wild opinion (seizures don't present like that)

Has the GP seen the rash? Surely they can't be putting it down to anxiety.

What sort of activities are you doing when it comes on? Are you stressed? Have you eaten any food or drink? Things like that. Is there any pattern to these events?

It sounds like they have made a diagnosis of panic disorder and have neuroimaging a lumbar puncture and an inpatient specialist review to support this. Where on earth does your sense of exasperation come from?

The pain sounds exactly like ice pick headaches I used to have. Neuros will called them idiosyncratic headaches (which translates to 'we don't know why headaches'. 😵‍💫

They're incredibly painful and sudden and actually terrifying. I had them for around 2-3 months and then they just vanished as soon as they'd arrived. Occasionally if I am run down I will have the occasional burst of them.

The hives look like MCAS - mast cell activation syndrome. Have a look and see if any other symptoms/triggers are linked.

Best of luck op.

Literally none. I’ve done a diary for my gp and they just prescribe something else.

There is no link between attacks.

They definitely do look like hives to me. Mine spread out along my arteries when I’m having a bad allergic reaction. Have you had any improvement to the hives - and the other symptoms- when sticking with an antihistamine?

Just a thought - you didn’t start using essential oils? I know the blood thinning ones can cause that bruising under the skin.

I wonder if you had a virus? Were you well before it all started in October?

What type of focal seizure presents like this?

Panic disorder doesn't cause sudden onset severe headache or a rash. I can't understand why the GP has prescribed diazepam or an antidepressant.

What condition causes those 2 symptoms whilst having normal neuroimaging and lumbar puncture. I assume That's why the specialist consultant at the hospital felt able to safely discharge. Why assume the rash and the headache are connected?

For the rashes I'd try a low histamine diet. I have mast cell activation syndrome and used to get awful hives but also used to get the most god awful ice pick headaches. I've had none since starting the low histamine diet. The next line of treatment is h1 and h2 blockers.

Also did any of this start after an infection? Virus? A very stressful time or major event ?

If any of your friends/children are able to video the episodes and after etc I think it'd help the drs... Good luck.

I haven't got any clue about what it could be, but I just wanted to see hugs. Its horrible that you're having to go through this without any answers. Hope you get it sorted soon x

'I had a stabbing pain in my brain and immediately was weak, shaking, pacing, twitching, trying not to lose consciousness and very unwell"

All the symptoms after the stabbing pain are typical of panic attacks. Short lived severe headache with normal ct and lumbar puncture - can be cluster headache (but would last 5-15mins if this is seconds then it's NOT cluster headache. Trigeminal neuralgia but would be facial pain and again usually lasts more than a single attack of seconds. If the pain lasts only seconds it is very unlikely you will ever find a diagnosis particularly given your normal investigations. The human body can experience any unexplained symptoms hundreds of times a day. It is important to investigate and consider serious causes (which seem to have been well considered here) but after that it is not unusual to not be able to find a diagnosis for some people. Itll