Touching the back of my head makes me vomit

[Phantosmia]

I've posted here before about the awful migraines I developed last spring that almost ruined my life. I was convinced I had a brain tumour.

I had a couple of months break from them, not completely but they were down to reguar headaches every few days and the horrid symptoms I had disappeared almost entirely.

I haven't found any medication that works and the neurologist was not interested in me at all. I waited months for an appointment only to be dismissed after 5 minutes with "maybe it was a virus". He didn't even hear my full story or symptoms.

They're back now. I had a migraine last week that started in the supermarket and I literally had to crawl out of the door and back to the car (I wasn't the driver!) because I could not stand at all. By the time I got home I was screaming in agony and vomiting from the pain. It was the worst I've ever had. I'm normally a stoic person who is quiet when in pain but I was genuinely frightened by it all. I ended up passing out on the stairs.

Since then I've had a few low grade ones. The prodrome symptoms and the after effects are worse than the pain at the moment.

On Monday I developed this rather interesting symptom - whenever there is even slight pressure on the back of my head I feel sick. If it lasts longer than a few seconds then I will vomit.

It's not that it hurts or that my skin/scalp is sensitive. I don't feel pain when it's touched, before, or after. I'm not dizzy, I have no head pain. I can touch other parts of my head and it's absolutely fine.

I can't put my hair up, lay on a pillow, even a tall collar on my coat is enough to set it off.

I don't have a migraine or even any head pain currently. I feel OK. But I just touched the back of my head (just to test it...!) and I was instantly gagging and retching.

What even is this?!
Am I experiencing a migraine without pain?

I would be contacting my doctor again and again till they take you seriously because it really does sound like you need medical help. It will be very difficult but it’s important you press them

It's been an absolute fight to get anyone to listen to me. Eventually I saw a nurse who ordered blood tests and helped me try a couple of new meds but when they had no effect and the blood tests were normal she gave up and had me go back to original GP.

They've now gone back to "drink more water" lines of advice.

Have you had an eye test (they do scans now, really detailed) to get them to check the backs of your eyes for any issues? Just thinking it may not be classic migraines but maybe an underlying other reason.

Neuralgia?

I'd go to A&E.

So I've had 2 in-depth eye tests includings scans and everything else offered. Results normal.

I've had an MRI. Results unremarkable.

Blood tests. Results unremarkable.

Edit to add: I also have been to the dentist several times and asked if they noticed anything that could be causing it. Everything looks fine.

So I accepted the diagnosis of migraines and I've tried several different medicines (Indometacin, amitryptaline, topirimate, and couple I forget. Please excuse spelling).

That brief time I was free of them showed me just how badly they affected every aspect of my life. I'd forgotten how I felt before they started.
Now they are back I don't feel depressed as I have in the past but I am angry all the time, I find no pleasure in anything. My body feels alien to me some days with all the buzzing and weakness and aches.

Now the bizarre symptom of not being able to touch the back of my head is frustrating me.

I have very long hair and I can't even put it in a ponytail. I'm debating cutting it off myself as I don't think a hairdresser would be too impressed if I was sick while they cut it.

Vomiting when your coat touches the back of your head is not normal. Crawling out of a supermarket due to intense head pain before vomiting and passing out is not normal.

Go to A&E

Agreed

Here's my previous post, it's long (sorry!) but shows just how bad I was
https://www.mumsnet.com/talk/general_health/4954826-what-is-wrong-with-me?page=1

I did start feeling better in March and was mostly pain & symptom free (compared to how bad I was) for a couple of months but I can see I'm heading back down that road again.

I can't go to a&e because I have no one to watch my children and if a neurologist I paid hundreds of pounds to see dismissed me after 5 minutes, telling me it's just a virus then who is going to listen to me in a&e? I'd definitely be waiting for hours and hours to be told to take a paracetemol and drink some water.

I don't meant to be difficult, I appreciate the the advice and support, but I've been dealing with this for so long now. No one outside of mumsnet cares, medical professionals do not give a shit.

Admittedly I am worried by this newest symptom but it can wait until I see the GP.

I was more just wondering if anyone else out there had experienced anything like this and just posting for support really.

Do you have intercranial hypertension?

Well the gps didn't listen to you either. 3 of them.

This is something for A&E and that's what you should do. I understand you feel ignored but you need a scan on your head. Another one.

If I knew my neighbour was struggling like this I would watch her children while she went. Or another school parent. Or whoever drove you home from shopping because they must be extremely worried for you.

IH was ruled out after the MRI.

If it gets worse I will try to get to a&e otherwise I'm going to have to wait for a GP appointment.