4 weeks in, pain still there and anxiety is high.

[JooT]

Good morning, 

hope everyone is doing ok, I’m so glad I came across this feed as I’m going out of my mind with worry. 
 

4 weeks ago, I had a severe headache appear, along with neck stiffness, which seemed to ease when I laid down. 
went to a&e. 

I was sent for a CT which was clear, I then had a LP (lumbar puncture) which was positive for red blood cells, I later had a contract CT and a CT angiogram, they were all clear. 

I was diagnosed with having a NASAH. 
 

4 weeks on and I’m still having the same symptoms, i cannot sit or stand up for more than a couple of minutes before the pain gets too much. Along with stiffness at the base of the skull and neck. 
 

Is this normal? I’m worried that the LP was maybe misread and something else is wrong. 
 

thank you for taking the time to read. 
 

[SarahLS]

While we can't offer medical advice I can say that I can see parallels in your story to mine, although my CT & lumbar punctures were both negative and I waited 4 weeks for a diagnosis after a MRI.

In between emergency hospital visits and neurologist appointments I did also see my GP a couple of times to try and sort pain relief for the headaches and their advice was if it got unmanageable to go back to A&E.

 

My acute pain did fade but knowing that after a NASAH diagnosis you wouldn't be dismissed at A&E made me happier about repeat visits and lots of GP visits.

 

I'm nearly 7 years on now and the back & neck pain did resolve but do get checked out, reassurance from professionals that your pain isn't unexpected or abnormal is a great help

[Karen]

Hi JooT and welcome,

 

Four weeks post brain bleed is still very early in terms of recovery.

 

The blood from the brain bleed dissipates down the spinal cord and into the cerebrospinal fluid and hence why your NASAH was discovered after your Lumbar Puncture, even though your scans were clear, which is good and no cause was found. So, in one sense it was good that they did carry out a Lumbar Puncture just to confirm that there was blood in the cerebrospinal fluid, but no aneurysm or other cause. NASAH can often be caused by a small blood vessel that's just "popped" but has healed over and no defecits re: body function/or a stroke and not a major artery. 

 

The blood remnants from the bleed can sometimes take many weeks to completely go .... mine was about 3 months and the back pain was awful. The blood irritates the nerve endings in your spine and hence the back pain etc. It's horrid, but the blood from the bleed has to go somewhere.

 

Keep yourself hydrated and drink enough water ... without overdoing the water .... it's a fine balance! If you're taking pain meds, drink a decent amount of water with them, as the pain relief gets into your system much faster.

 

I never had a Lumbar Puncture with my bleed, as I showed up after CT scan with an emergency visit. However, this is something that can cause additional problems re:back pain and where the needle was inserted. So, maybe you're having a double whammy with the head and old blood draining into the CS fluid, plus the Lumbar Puncture after effects on your spinal cord?

 

https://www.nhs.uk/conditions/lumbar-puncture/

 

I can't offer any medical advice - if you're worried, make an appointment with your Doc. Write all of your questions down, before you go/or email as it's easy to forget.

 

Did you leave the hospital with any advice? 

 

If it makes you feel any better, I've been running this site since 2006 and we haven't lost anybody to a NASAH. 🙂

 

Sometimes a V pillow helps with sleep with back/neck/problems/pain ... or just a pillow supporting your lower back.....it's all a bit trial and error to be honest!

 

Wishing you the very best. x

 

[JooT]

Thank you for much for both of your replies 😊! 
 

I did not receive any information from the hospital, other than I will get better it just takes time. 
 

I have the contact details with the neurologist nurse and am due to speak with her next Tuesday, I have sent her an email with some questions I have so I don’t forget.

 

Thank you for the pillow idea! i have ordered myself a V pillow so will try that tonight, as my neck pain has been hindering my sleep also. 
 

So glad I found this forum. So thank you.

 

best wishes, xx

[Karen]

Bless you and always ask the questions. 

 

Wishing you the very best. xx

 

[SarahLS]

Glad you can talk to a specialist soon, and definitely a good idea to email the questions in advance. Can I suggest making sure you have them to hand for reference during your call? In my experience my neurologist hasn't seen/had time to look at an email prior to my appointment and if I hadn't had them to hand I'd have floundered.

 

The pillow issue is an interesting one I'd not thought about until just now, prior to my bleed I almost slept sitting up I had to have such high pillows, but since I've slept almost flat and finding one flat enough is the challenge...

 

Definitely also echo the drinking lots of water, it does help with the pain - and any on going headaches.

[JooT]

Can I just say that the V shaped pillow has been a godsend! It’s really helped with the pain whilst I sleep. So thank you! £18 from Argos as I went for the fluffy one 😊 

 

I have also got a headache relief hat coming from Amazon today, which can either be cooled or heated which I thought would be good to try. I will report back once I’ve tried it out. 
 

The past two days I have also seen some progress in terms of the pain, think this is the progress I needed to see. 
 

it really is a very slow and steady recovery isn’t it. 
mentally it’s a big challenge for me also, but have a big support network which really does help. 
 

Hope everyone is doing ok. 

[Skippy]

Hi there

Glad you're finding the V pillow a help. 18 years in and I wouldn't be without mine.

[jess]

Hope pain eases soon glad v.pillow is working I have one to they are really good xxx

[JooT]

Hello, me again! 
 

I just wanted to update since posting this, I am now just over 7 weeks post NASAH. 
And I am now able to walk my dog and children to and from school, do some household chores and can feel my life starting to come back which is fantastic! 
 

I have gained a new symtpom, which I am assuming is linked, that I have muffled hearing in one of my ears, has anyone experienced this? 
 

Hope everyone is doing ok. 

[jess]

My ears sound as if I am underwater sometimes since my bleed but go and see your Dr xxx

 

Hope it goes soon xxx