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AIBU?

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See all MNHQ comments on this thread

Original poster

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

141 replies

Ostryga · 09/02/2023 19:56

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.

OP posts:
Escapetothecountryplease · 10/02/2023 00:42

And my version of MCAS has lots of reactions to medication. Some people react to the casings or fillings, even of the meds

StarPup · 10/02/2023 00:44

Your red rash looks like a type of vasculitis possibly - is it non blanching? My daughter has a type of vasculitis, HSP, with a red non- blanching rash - which was triggered by a virus. I know it can present with neurological symptoms occasionally.
Whatever it is, you need to be referred for thorough tests. Hope you get some answers and relief soon, it sounds horrible.

GreenFingersWouldBeHandy · 10/02/2023 01:27

Sounds like a form of seizures.( I am a diagnosed epileptic; they are hundreds of different types). The hives could be a reaction to the medication.

I'm surprised they are switching your medication so often as a lot of these need to be increased or decreased slowly. Amitriptyline is also an anti-psychotic and known to actually cause seizures.

You need to be referred to a neurologist, urgently.

CandlelightGlow · 10/02/2023 02:01

Also OP just in case you are on contraception and have ruled it out as the cause, it can also be a trigger for skin conditions such as Autoimmune progesterone dermatitis; some of the pictures do look like the skin condition you took photos of.

Sammz21 · 10/02/2023 02:18

Have you had covid recently (in last few months)?
I had hives all over my body & my mouth swelled up after covid, only happened once though.
The other other thing is have you had difficult times/trauma in the past?
Sometimes when we feel more 'settled', (can be years later) that's when the body reacts, with strange symptoms.
I would suggest as much rest/self-care as you can.
I hope the referral sheds some light on the situation for you. 🌺

DomPom47 · 10/02/2023 02:47

Headaches could potentially also be temporal arthritis.
Keep a log on your phone or in a small diary of day and time and anything you are noticing and also lifestyle things e.g had just eaten x and then noticed ….
you need to get GP to take a full range of bloods and if those don’t add any clarity ask to see a specialist of some kind. It’s difficult when there’s something clearly wrong and there’s no answers.
Hang in there and make sure you advocate yourself well with your GP to get some answers 💐

Chocbuttonsandredwine · 10/02/2023 03:17

If it mastocytosis, then rubbing rash with a paper clip will irritate it and bring it up.

dp has recently been diagnosed and it’s what the doctor did. ( followed by bone marrow sample)

Fraaahnces · 10/02/2023 03:38

I’d be looking more at the hives, etc than the headache… they indicate an allergic response to something. Sounds very serious. Get back to the GP and ask them to investigate that line as well!

NotWhereIWantToBe · 10/02/2023 07:27

User613 · 09/02/2023 21:06

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?

Show quote history

@User613 - I responded before the OP had updated about her referral.

Duckswaddle · 10/02/2023 07:56

Sounds/looks like an allergic reaction.

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.

Covidia · 10/02/2023 23:13

Reassuring (for me) to see all the people who had post covid rash… I thought I was the only one, felt demented with it.

@Ostryga make sure you get full bloods done. I had dodgy low neutrophils, high creatinine and few other anomalies.

Biscuitmonster2318 · 16/02/2023 00:52

I had a stroke a few years ago and I now suffer with Hemiplegic Migraines which give me an aura, thankfully, so I can sit down. But the pain is awful in my head. To look at me I look, speak and walk and act as if I have had a stroke.

I had biologicals for a health condition and I have been on some of the same medications as you. I got a similar reaction on my skin but my mouth, tongue and throat and my eyes swelled up. As the drugs had caused a strange reaction within my body. I was told some of the tablets should have been out of my system before adding a new one.

The consultant said it was like when at school in chemistry and lots of different chemicals added in one pot. You will get by products from the different drugs reacting. Like if you mix zoflora with bleach to clean, and you end up making chlorine gas as a byproduct.

Something about cytokines but I think that was due to the biologicals. Then my body couldn’t cope and it came out in similar to an allergic reaction

Original poster
Ostryga · 16/02/2023 20:21

Thank you so much to everyone that has posted! I have my neurology appointment on Tuesday and I’m going to call my sister on loudspeaker, she is a neurology specialist nurse and is much firmer than I am. I think it will help having someone else there.

I had another horrible episode yesterday where I was just laying in bed after waking up. Had the 30 second ‘aura’ I assume? Just knowing it was about to happen and trying to stop it (deep breathing, distracting myself, watching YouTube!) and nothing helped and it hit me so hard. It feels AWFUL when it’s happening and I went downstairs just trying to walk myself out it. It doesn’t feel like a panic attack - I’m not panicking it’s just the feeling of it is so fucking scary. Anyway once it stopped I had another 2 in quick succession and just had to sleep the rest of the day.

OP posts:
MarshaMelrose · 16/02/2023 20:24

I'll be thinking of you on Tuesday and I hope it goes well and they can get to the bottom of it.
Sisters do have their uses. Mine came with me in the midst of mental health problems. She certainly got those medical professionals moving, that's for sure!!

justasking111 · 17/02/2023 00:27

@Ostryga best of luck on Tuesday. I hope you get some insight into what is going on.

OldFan · 17/02/2023 00:48

I had psychosomatic hives a couple of times so it can happen.

Praying for you OP, please keep us in the loop. x

Grizzledstrawberry · 17/02/2023 09:07

Good luck, don't be scared to demand the care you are entitled to. You deserve better.

Original poster
Ostryga · 21/02/2023 09:58

Just had my consultant appointment. It is epilepsy. They are complex partial frontal lobe seizures. I’m starting a new medication and booked in for an MRI in the coming weeks. The consultant says the meds should stop them within 4 weeks.

Feel validated! Also get a free bus pass and never have to pay for prescriptions so every cloud.

OP posts:
KimberleyClark · 21/02/2023 10:04

I’m glad you finally know what’s going on OP and you are getting treatment.

Orangesandlemons77 · 21/02/2023 10:06

Glad you know what is going on, sorry to hear about the epilepsy but glad to hear it can be treated Flowers

NoodleSoup12 · 21/02/2023 10:53

That is very scary OP and (sadly - in this current NHS under this current gov) if I were you I’d get yourself to A&E the next time it happens and not leave until you have some answers. This sounds and looks (the rash) at least semi serious and I personally wouldn’t want you to come a cropper waiting a year for a neuro referral!

NoodleSoup12 · 21/02/2023 10:54

Oh! Silly me!! Didn’t read the latest post. Your earlier ones were scary enough w the rash pic, poor you! Glad you know what it is and can proceed accordingly x

GarlicGrace · 21/02/2023 10:58

Oh, I'm so glad you got a credible diagnosis! Obviously not brilliant to have a long-term health issue, but it is one that's known & understood. You must feel much lighter now!

All the best with this going forward.

MarshaMelrose · 21/02/2023 11:02

I'm so pleased you can put a name to it and relief is in sight. Epilepsy. I don't think anyone suggested that. Enjoy your free bus rides - you deserve them. x