Hello from recent NAPSAH sufferer

[KateEMay]

I’m so pleased to have landed on this group and to be able to read about similar experiences. I suffered a non aneurysmal perimesencephalic subarachnoid haemorrhage three weeks ago - massive sudden onset of headache and neck spasm - radiating from base of skull at the back round to temples.

 

Went to local small emergency unit who referred to bigger A and E dept. CT scan showed no bleeds (apparently) and since I was fine other than neck pain and rushing pulsing headache, I was given diazepam and told I could choose to go home (after 9 hrs in A&E waiting room or wait there overnight for a lumbar puncture as a double check but there were no beds anyway).

 

Went home. Headaches continued and on getting up had strange aches in lower back and down tops of back of legs. Back to A&E for another 12 hrs in the waiting room until finally got admitted onto a ward.

 

Lumbar puncture next day. Results the following day indicated bleed. Given Nimodipine and ambulanced to neurosurgery at St George’s South London.

 

Review of the original CT scan was determined to have shown small bleed so confirmed with CT angiography. I was pretty well throughout except for stiff neck and headaches, and weird feeling at the base of my spine on getting up to walk which was always simultaneous with rush and ‘swimmyness’ at back of head that then settled after a minute or two. I’ve always suffered with bad neck though for last 15 yrs. 

 

I’m ‘ok’ three weeks on but what’s worrying me is that although the neurosurgeon and reports I’ve read say this NAPSAH doesn’t recurr, I actually had three instances of that exact same phenomenonal headache, like being hit across the back of the head and then rushing and radiating round, prior to this recent one.

 

I didn’t seek medical attention previously because I thought it was neck spasm and it did go after an hour or two with anti-inflammatory painkillers.

All 4 occasions were during same kind of intimacy and they weren’t consecutive but all within last 6 months. Neurosurgeons say the former three were most likely unrelated to a bleed. 
 

I wondered if anyone else has suspected that they’d had more than one episode? 
 

And also around the time of the earlier episodes I also developed a constant buzzing tinnitus. 
 

Wow. I do sound like such a moaner, especially as others have obviously suffered more lasting effects, but it’s all been a bit scary recently. 

[Tina]

Hi Kate  

 

A very warm welcome to BTG, glad you found us.

 

You certainly dont sound like such a moaner at all, you have been through a very scary trauma, bless you.

I was treated at St Georges too.

 

You will find lots of helpful supportive information here. There are others that have gone through similar.

 

We look forward to hearing more from you and how you are doing.

Take care

Love Tina xx

[KateEMay]

@Tina Thanks Tina. I’m waiting to see if a neurologist can tell anything from an MRI scan on my head and neck. The neurosurgeons at St George’s suggested I be referred to a neurologist for any further investigation given that I’d had these violent headaches and neck spasms three times prior to the diagnosed non-aneurysmal SAH.

 

I’m lucky enough to have private health insurance through my husband’s work, but a bit pot luck as to which neurologist you get through BUPA though and I got the feeling he didn’t know so much about this particular condition 😬

[Tina]

Hi Kate  

 

Not sure if this will be helpful, but i am under a Mr Kuven Moodley he specialises in Neurology at St Georges and found him very understanding and helpful. I think he does private but if not you can get referred to him by your GP.

 

Wishing you well.

Take care 

Love Tina xx

[KateEMay]

@Tina Thank you. I’ll bear him in mind if I want to press for a second opinion. Really appreciate your support. Hope you’re ok x