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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:
Pickledprune · 09/02/2023 22:24

Could it be a form of neuralgia or type of occular migraines. I get them and feel out of sorts for up to 24 hours after sending hugs xxxx

Anoooshka · 09/02/2023 22:25

OldFan · 09/02/2023 22:06

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

From WebMD page on MCAS:

Some key symptoms include:
Swelling
Itching
Rashes
Inflammation
Vomiting
Headaches
Chronic pain
Flushing

Diarrhea
Constipation
Fast heart beat
Low blood pressure
Fatigue
Fainting
Sweats
Abdominal pain

MissHoollie · 09/02/2023 22:31

I'd also say it sound alien mast cell activation.
The release of histamine causes a panic feeling

Chucklecheeks01 · 09/02/2023 22:45

Look up reversible cerebral vasoconstriction syndrome

Passthechocolatesplease · 09/02/2023 22:47

Rather than everyone guessing on here OP I would keep pressing your doctor for a quicker referral. Your doctor is obviously treating it as anxiety with those prescribed meds, but it sounds much more than that, has a full blood test been done as those photos look awful. I do hope you can get sorted very soon.

Starsnspikes · 09/02/2023 22:49

Vasovagal syncope/vagal nerve dysfunction? Certainly fits with some of your symptoms although not the headaches or hives.

GarlicGrace · 09/02/2023 23:02

@Ostryga, you have seen all the replies about Mast Cell disorders? Even if your primary cause turns out to be something else, all your symptoms are congruent with a histamine crisis so this seems an obvious line of inquiry.

I've had anaphylaxis. It was identical (only the one episode for me, luckily, but it went on for longer).

Your GP's probably following the "look for horses, not zebras" line, but also falling for the common misconception that all strange symptoms in women are likely psychosomatic. You could email her/him the info from the NHS or Mast Cell Society.

Good luck!

Secretname123 · 09/02/2023 23:07

have you had covid recently? This sounds very similar to my worst symptom since getting covid 10 weeks ago. I don’t have the rash or hives though but some people with covid do. It feel like a mega panic attack x100. I’ve been convinced I’m having a stroke as my limbs go numb and I sometimes forget how to speak. I’ve had big improvement taking antihistamines so I was thinking might be mcas related too. Doctor not interested as it’s “post covid syndrome”.

GarlicGrace · 09/02/2023 23:10

@Secretname123 Doctor not interested as it’s “post covid syndrome”.

What the fuck? 😡 Knowing the trigger doesn't make you any less poorly!

Wheresthebeach · 09/02/2023 23:19

Hives, migraine like headaches, weakness, dizziness etc can all be a sign of a sever allergic reaction. I suffered similar for about two years (entire body covered with constant rash and hives so I had prednisone repeatedly) until the trigger was identified (sulphate - not easy to identify). Get that looked into as well.

Onnabugeisha · 09/02/2023 23:22

I’d get a referral for allergy tests. All your symptoms- including the headaches, dizziness, sweating, breathless, tight chest, hives, rash (you called it bruising, but it’s a rash) are symptoms of an allergic reaction to something.

It can even be something you did not used to be allergic to in the past.

Frozensun · 09/02/2023 23:22

I’d suggest while you’re waiting, talk to your doctor about taking antihistamines daily/regularly. The only reason I say that is that hives are representative of histamine release. I’ve had angioedema (idiopathic). Off and on for 20 years. It’s not what you have, but it was exacerbated by stress. My specialist recommended antihistamine (long acting) daily which I took for 5 years straight at one stage - so it was safe for long term use.

LemonSwan · 09/02/2023 23:26

That rash sounds and looks exactly like my post COVID vaccine rash. Which I am assuming was a immune reaction or allergy reaction.

Comes on within seconds. Tracks quickly all over different parts of the body. Red, raised and itchy. Can disappear with no reason just as fast unpredictably.

I did always get them more in certain places than others. It is the mast cells on the surface of the body. I have lots on my belly, some lower back, on lower legs, some on arms.

So immune/ autoimmune/ allergies are my guess.

Chickplz · 09/02/2023 23:27

Gluten intolerance/coeliac disease. Dermatitis herpetiformis. And gluten can apparently cause also neurological symptoms.

Covidia · 09/02/2023 23:34

In all seriousness have you, or could you have had covid?

It is a vascular disease which could explain the bleed. Can cause palpitations for an extended period. And here’s what made me think it - the rash. The fourth time I got it I came out in this horrendously itchy rash everywhere. Unbearable. Went on for months. Had to go on steroids twice to calm it down. I had vomiting to begin with then nausea and palpitations etc for months and feeling awful…

In short it could be long covid, I wouldn’t rule it out.

Grizzledstrawberry · 09/02/2023 23:34

Are you on any other medication, other than the ones they have prescribed for this? You could be having a rare reaction.

Partyandbullshit · 09/02/2023 23:35

Sunnyfootlands · 09/02/2023 21:04

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.

I agree with this. A low dose of something like Keppra might work.

Covidia · 09/02/2023 23:35

** also I now have autoimmune issues due to it, GP said, like other viruses, it can trigger autoimmune… just dreadful I can’t tell you.

I hope you get sorted x

Onnabugeisha · 09/02/2023 23:38

Partyandbullshit · 09/02/2023 23:35

I agree with this. A low dose of something like Keppra might work.

Show quote history

OP already had a CT and lumbar (spinal fluid check) and both were normal.

Covidia · 09/02/2023 23:41

Ostryga · 09/02/2023 20:16

The bruising and the hives.

Google covid rash. And you need prednisolone to calm it. I felt amazing on it…. Until the end of the course!

Could be other autoimmune/cause of course..

But if covid there’s a strong chance it’s temporary (months) as opposed to permanent which would be good!!

OntarioBagnet · 09/02/2023 23:49

Chihuahuasrule · 09/02/2023 20:51

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

I thought vasculitis as well. My dad had very similar rashes and they said he had vasculitis…….which I think was more of a symptom than a diagnosis as they never really got to the bottom of what was causing it. Interestingly he also had crushing headaches which could come on suddenly (his could last for hours), but he would be moaning and rocking with pain. They reckoned it was some sort of autoimmune thing and did mention it might possibly be Wegners Granulamatosis but he had other stuff as well which didn’t really fit with that.

Cordeliathecat · 09/02/2023 23:53

wrt the rash and hives, check the adverse side effects of all the medications you’ve tried as I wouldn’t be surprised if it’s related to that.

I had an underlying and undiagnosed health condition. I also has skin complaints. Once I stopped all trial and error medication my skin conditions disappeared which just left me with my core symptoms and thus much easier to eventually diagnose.

Willyoujustbequiet · 09/02/2023 23:55

Autoimmune

I would ask for an antinuclear test and screening for such disorders.

WishingMyLifeAway · 09/02/2023 23:55

stbrandonsboat · 09/02/2023 20:36

Ooo! That's a good call based on OPs described symptoms. Was just thinking it's an odd mix of symptoms for one condition, suggests neuro, allergy, something blood related. Interesting.

Hope you find the answer soon OP. I know what it's like to feel unwell and have no answers.

Escapetothecountryplease · 10/02/2023 00:41

Mast cell activation syndrome

It's a very weird condition and affect each person differently.
Have a look at the research my Dr Afrin I'm afraid it's so badly understood that it's not even on the NHS website. Mastocytosis is there but it's not the same as that.
Can set off symptoms of pots which could be the dizziness

Both of which have some relation to long Covid or can be set off by an infection or trauma