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.

The two rashes you have combined could suggest urticarial vasculitis (urticaria is the medical word for hives, vasculitis essentially means blood vessel inflammation) but has anyone looked at the rash/have you been referred to a dermatologist or seen a GP with a dermatology interest?

I'm not sure how your headaches would relate to that but I do wonder if they are a bit of a red herring - ie you are taking meds to try and make the headaches go but there's an underlying problem causing the rash and if that's treated the headaches might improve anyway?

I was also going to suggest mastocytosis it causes strange issues. I’ve had a few patients over the years with it (not for that but referred to the service I work in, it made managing their routine care for something unrelated a bit more complicated) and they all had a long enough journey to get diagnosed.

Hope you get an answer or it resolves soon

I was about to suggest Mast Cell Activation Syndrome. Not sure if this is the same as mastocytosis, but the symptoms sound similar.

As others have said, the rash/hives suggest either Mast Cell Activation Syndrome (MCAS), Mastocytosis or possibly even the more recently recognised Hereditary Alpha Tryptasemia Syndrome (HATS). This is the UK Mast Cell Support and Advocacy Group’s website.

Both are histamine related and you can get all manner of weird and horrible symptoms with an attack, including headaches and migraines, as histamine is present throughout the whole body.

Some of these conditions are, relatively, newly recognised in the UK and not many doctors, let alone GP’s are able to recognise/diagnose them, as they need specialist blood tests for accurate diagnosis.

With the involvement of the rash and hives, I would have thought dermatology or haematology might be a better referral than neurology, as mast cell/histamine issues are not really neurology’s remit, but if you direct your GP to the UK Masto information they can get advice on basic bloods they can run and where best to refer you.

Look up Temporal Lobe Epilepsy.

The feeling knowing it is going to happen makes me think of this. The seizures can be very varied between different people, read a bit about it before dismissing it.

If you think it might be this, you could ask your GP if thdy could refer you to a First Fit clinic to see a Neurologist- this should have a shorter wait than a general Neurology clinic.

The rashes and bruises don't fit this, but they may be a coincidence.

www.epilepsy.com/what-is-epilepsy/syndromes/temporal-lobe-epilepsy

I haven't read all the replies so sorry if this has been mentioned but @Ostryga how old are you? Are you on hormonal contraception?

Before having DC I went on the mini pill and after several months developed extreme anxiety and acute panic attacks which like yours would attack me out of the blue - walking to work, going to the toilet. I also got an extreme sense of vertigo/lightheadedness.

I didn't however have headaches, but google tells me migraines can be caused by hormonal contraception. Sorry if this is useless but you sound desperate, I do hope the doctor takes you seriously and you find a solution x

Parietal lobe www.epilepsy.org.uk/info/seizures/focal-seizures

Doesn’t explain the rashes. But like I said worth investigating. IME any seizure that isn’t a tonic clonic is often overlooked (& sometimes tonic clonics are as well).

If someone is with you may be worth them videoing you OP. Neurologists like video ime.

Phaeochromocytoma? Not sure that it would explain the hives though.

Another vote for Mastocytosis here - my son has has it since birth, and a lot of your symptoms resonate.

I’ve had the exact same red rash on my torso and hives on my fore arms since I had Covid in August. Thankfully no headaches.

My GP hasn’t a clue what’s causing it, she prescribed strong antihistamines and some steroid cream for the hives which then turned into eczema and that’s taken the pain out of the hives. She’s not sure if Covid triggered something or it peri menopausal?

I’m trying a low histamine diet as I figured my body doesn’t like something and that is really helping. So I’m following this with interest OP. Hope you get some answers and feel better soon.

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.

There are loads of meds that can help with anxiety/psychosomatic symptoms though @Ostryga . You won'tve tried everything yet, there'll still be plenty for you to try. Keep going back until they find what works best for you.

@Clovacloud some people have developed MCAS after having Covid. A low histamine diet is sensible, but have a look at the website I linked to upthread as well, as if it is both H1 and H2 blockers are often needed for adequate control and different antihistamines work better, sometimes in combination (via professional medical support) for different people.

Interestingly, there are now links being made to MCAS starting up during the peri-menopause as well, so could be either or both.

I also came on to suggest MCAS.

I'm pretty sure you don't have MCAS or anything grizzly OP. I hope not anyway. Praying it all gets sorted out soon xx

@Musicsoundsbetteronvinyl thanks so much I’ll have a look at that. I have a sneaking suspicion it’s more Peri related as it seems to get worse/better during different parts of my cycle. Thanks so much for your help and the link!

Op have you looked at getting an MRI booked private online? I paid 350 to get my worries ruled out and got one within 3 days. It’s expensive but worth it- NHs waiting lists are bad

I'd be wondering about something autoimmune with these symptoms on top of the neurological ones. But I'd be guessing.

Some sort of vasculitis? Did it begin after covid or after covid vaccine?

I had similar a few years ago, it was eventually diagnosed as cluster headaches- though it wasn’t a perfect fit. Verapamil though as a last ditch try made a massive difference and I really got my life back.
For the really bad headaches sumatriptan as a nasal spray or pill did nothing, but was incredibly effective as an injection. It’s had to describe, it’s like ice cold water being poured inside your head seconds after injection then the pain flicks off like a switch. It’s quite unnerving, but it works.
The hives though for me were far more minor, I presumed an extreme reaction to the sudden stress of the pain.

You haven't been bitten by anything that could have set this all off??

For me the feeling before actually was also different. It was like someone gently lay their hand on my head, then I felt agitated.

During the attack I couldn’t be still, I’d pace and it was all consuming. The opposite of a migraine when you want to lay still.

Not RTFT but I was thinking the same thing. I don't really have any insights, OP, but I hope you get some answers soon, it sounds awful!

Get full bloods done ASAP, they should have been done already. Make sure they check glucose, clotting factors, cortisol.

Also, I know it sounds obvious but have you had your blood pressure and heart rate checked? Whilst you’re waiting for your neuro appointment I’d do the following:

-Buy a blood pressure automatic machine. Take your BP morning and night. More importantly, get someone to check it whilst you’re having an episode. Record all these readings. The same applies to taking your pulse.
If it is mastocytosis and your vital signs are really abnormal, contact 111. This might end up being your route to being seen more quickly. In any case, these readings are always useful for health professionals when they do eventually see you,

-Get an antihistamine prescribed. Fexofenadine is the strongest one I know of. I like to assume you’ve been given a steroid cream for the hives at least.

-Aside from that I recommend emphasising to GP that you don’t want to try different meds, you want to get to the bottom of this instead. Keep chasing the GP to ensure referral is done.

-Then call hospital to chase appointment. Patients who chase consistently get seen more quickly.

You may not have had any additional stressors (that you were aware of) when the head/brain pain/weakness/shaking, etc. first started, but you certainly do now. If it is a panic attack, having medical issues that you’re unable to figure out and are causing you distress is certainly something that could cause someone to continue having panic attacks.

Have you ever had any mental health issues before, like depression or anxiety?