Calling UK NASAH people

[Carolyn250]

Hi I’m Carolyn, based near Leeds and had my event in June 2020

 

i have posted this to see what experiences of follow up support post hospital people have had and what they found useful

 

Sadly I had none and am now looking for possible ongoing support but no idea what’s out there

 

Any experiences or ideas gratefully received

 

I was doing well and largely back to normal - 95% - then at Xmas had a weird episode that put me back to head jitters, head aches and fatigue so am keen to see what may be out there for support 

thanks

[Louise]

Hi there

 

if you've had no follow up give the Neuro a call with 'covid' there is probably a backlog but no harm in moving that on some...

 

take care, 

 

 

[Carolyn250]

Thanks for your reply 🙏🏼

I had a phone call from the neuro out of the blue a year ago. He asked me about 5 questions and then said he was signing me off. That was it. I paid to see a neuro for a review last May too. But I’m still not right. The doctor has put me on pregabalin (low dose) but I feel no different as yet

[Tina]

Hi Carolyn

 

Sorry you had an episode at Christmas. Do you think you may have been over doing it or a bit stressed at all ?

 

I have found my GP very helpful and supportive. I had felt quite unwell with bad headaches, fatigue again recently and i went to A & E and was referred to a neurologist who has been very helpful with scans MRI etc that has given me peace of mind all is ok. He has left it open in case i need to come back.

 

I know you have paid to see someone, but maybe if still not feeling right ask your GP to refer you back to your Neurologist ?

 

Hope you are keeping well as can be.

Take care and let us know how you are doing xx

 

Tina xx 

 

 

[Carolyn250]

Hi Tina

Thanks for your reply - very good advice. Maybe now covid is receeding a little I may get further with a request. I was doing well until Xmas - something happened!! I don’t know what but I’m definitely back many months with symptoms. You’re right - it’s all about sufficient peace of mind 

 

Do you mind me asking how long ago your NASAH was and how far your recovery has gone. 
thank you 

cx
 

Thanks for your reply 🙏🏼
I had a phone call from the neuro out of the blue a year ago. He asked me about 5 questions and then said he was signing me off. That was it. I paid to see a neuro for a review last May too. But I’m still not right. The doctor has put me on pregabalin (low dose) but I feel no different as yet

[Tina]

Hi Carolyn

 

Mine was an SAH not a NASAH, but a bleed is a bleed, mine was 14 years ago now. My body still lets me know to slow down even now. If i push myself i pay the price and feel awful. I suffer from fatigue and nerve pain around my right eye and side of face. I also get Brain zaps, which i learnt is the name from Jess,  for when i suddenly feel lightheaded and swooshy.

 

I hope that now things are re opening and getting better with Covid that you may have some joy with a referral from your GP. Dont be fobbed off, you know your body and how you feel you have gone backwards in your rcovery. It could just be you have to learn your bodies limits and adapt to the new you. Go steady and pace yourself xx

 

I dont know much about Pregabalin other than it is for anxiety., it may help you .

 

Good luck, keep well xx

 

Tina xx

 

[ClareM]

Hi Carolyn, I too suffered a NASAH coming up for 7 years ago. I can't surmise as to what happened to you at Christmas but you should have been able to get some answers from your GP or the Neuro unit you were treated at. I know a lot of such services have been cut during Covid but there should be someone you can contact at the hospital you were treated.

 

As Tina says it's not whether an aneurysm ruptured or not but the amount of blood and any complications that causes issues. I had a large bleed with hydrocephalus which was treated with an external drain. My life has changed beyond belief since my event but the biggest change has been in the amount of work I can do.

 

Are you still working and if so have you altered your working hours? I now only work 3 days a week, a gradual reduction which has been forced on me since my initial phased return. 

 

With regards to support, I have had incredible support from an NHS Neuropsychologist who has helped me with coping strategies for the cognitive changes I suffered. She has also helped we come to terms with how my life has changed.

 

I also still attend meetings (online at present) that are run by the Nurse Specialists from the unit where I was treated. I have made good friends with one of the other ex patients - it's nice to be able to chat to people who understand. Same as the people on BTG.

 

I hope you get some answers.

 

Clare xx

[Carolyn250]

Hi Clare

Thanks for replying.

 

My NASAH was relatively small I think not like yours but my brain has certainly been insulted by it!!!

I asked to see a neuro psychologist but was advised by doc to go private. I explained I had no idea what I’d be looking for in a private NP and online many are there to assess for insurance claims it seems so since that didn’t apply I went no further down the private route. 
 

The docs seem to think this latest development is down to anxiety and are treating accordingly but I’m previously not an anxious person at all - I’m a get on and do person!  

 

Whilst I accept anxiety is assoc with this I am experiencing headaches, constant brain fizz, fatigue at times as well as neck ache and random aches and pains that I don’t get when I was well before Xmas!! These are symptoms I suffered in first 6 months after initial event in 2020.

I only work 2 days a week following this as could not manage a full week as I feel now.

 

I will keep trying with NHS and/or ho back to private neurosurgeon and pay if necessary. I just need answers! If this is the norm and I gave to live with it then I’ll just have to get on with it.

 

Thanks so much for the support on here. It means a lot.

🙏🏼

[Helen B]

Hi Carolyn

 

I had a NASAH in March 2021 and am also based very near Leeds! I don't know if you've been in touch with Second Chance Headway in Wakefield?

 

There is a wait as with all things at the moment, but they are a charity specialising in all kinds of brain injury/trauma and have helped me beyond belief, both emotionally/psychologically and physically.

 

They've helped me get referrals to neurophysio for dizziness and to neuropsychology for anxiety and panic, all through the NHS.

 

We did pay to see a neurologist last June but to be honest he discharged me even though my problems have not gone away and I have regular 'episodes' that leave me bed bound and unable to function for days.

 

Through Headway I now have an NHS referral to another neurologist for a second opinion. I really feel your frustration when you have setbacks and feel as though you're going backwards - I've had that quite a bit and it's upsetting.

 

It's also slightly reassuring to read on here that people whose bleeds were years ago still do experience problems now - it makes me feel this is at least normal and that I don't necessarily need to panic. I'm slowly learning to manage my expectations.

 

Take care

Helen

[Carolyn250]

Wow Helen that’s really useful. And good (in a bad way) to hear they others get set backs 

i did speak to Headway but not the one you mention. Will give it a look

thank you so much.

 

And I hope you continue to improve. 

cx