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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Should I go to A&E for Post lumbar puncture headache?

67 replies

Tinkerbellone · 17/09/2023 20:41

DD 15 has lumbar puncture 4 days ago. She's in agony with headache. I've rung the children's ward sat and sun - they've said that it's a common side effect but to bring her in if she's screaming in pain.
On a scale of 1-10 (10 screaming in pain) DD Says she's at a 9.
If I ring 111 I know they will tell me to go to A&E.
...but she can't sit. Only lie down. Pain is unbearable sitting up.
I've explained all this to nurse who relayed to a Dr. They don't seem worried but it awful watching my DD in pain and unable to sit up. She has no temp. Although, some side effects from new medication.

Has anyone had any experience of post-Lumbar Puncture pain?
What would you do?

OP posts:

BabbleBee · 17/09/2023 20:43

I’d take her back in - do you have open access to the ward?

She may need a blood patch. Hope she soon feels better 💐

Fourpaw · 17/09/2023 20:44

If this were my child, I would take her in. Wising you all the best with this.

SkyFullofStars1975 · 17/09/2023 20:45

DD had to have one earlier this year and she was screaming in pain 2 days later with the headache. We just went into A & E after 6 fruitless hours trying to get an answer for the department where it was done - they were great and she soon recovered with a blood patch.

mfhtoeh · 17/09/2023 20:46

Better safe than sorry.

Post lumbar puncture headache is truly a genuine & horrible side effect (been there, done that!) but after this many days you’ve got nothing to lose getting it checked out. She might also get some decent pain medication & feel better so either way it’s worth going.

Watto1 · 17/09/2023 20:46

I had this after my epidural. It was excruciating. I ended up going back to the operating theatre to have a blood patch. This is where they inject your own blood into the epidural/lumber puncture site. Headache gone in an instant like magic! Maybe your dd needs one? In the meantime, caffeine and lying flat helps. Hope she feels better soon.

agonyagony · 17/09/2023 20:47

Poor girl. I’m pretty stoic but I would take her in. There’s just no need to suffer so much pain (I’m a migraine sufferer and it’s awful, I hate to think of a child suffering like that).

Christmas202 · 17/09/2023 20:47

I had this after giving birth. It was honestly like an ice pick was slamming into my skull. Rest is the best medicine and also caffeine is recommended. I drank tons of lucozade. It did eventually ease. She has my sympathies.

Fuckthatguy · 17/09/2023 20:49

Your poor DD, yes, best to take her in to get it checked out, and some decent pain medication.

MrsKathyFraser · 17/09/2023 20:50

I've had this pain, after an epidural. It's agony. Take her now, a blood patch fixed mine but they let me suffer for days before telling me this was a possibility.

Crazycatlady83 · 17/09/2023 20:50

I had this after c-section. Drink loads of full fat coke and lie flat in the meantime. Luckily for me that worked, as they will explain to you the side effects of the blood patch

Nattalie18 · 17/09/2023 20:52

I also had it after c section. Go to a&e she, she should not suffer like this.

JudyGemstone · 17/09/2023 20:53

I had this after my hip replacement surgery, it was rough.

get her to lie flat on her back.
mine went away after a day or two without treatment.

chels85 · 17/09/2023 20:53

I've had this. Worst pain ever!

Olivia199 · 17/09/2023 20:54

I had a lumbar puncture at around the same age and suffered the same after. Laying down I was okay but standing was horrendous. Felt like I'd pass out. Managed to go to the GP (and laid down in the waiting room) and they called the consultant at the hospital who asked for me to go straight in. The ambulance was arranged and I was directed straight to the children's ward.
They thought it likely to be a CSF leak. They did what's called a "blood patch" in theatre, no anaesthetic or anything of the sort. Just local and essentially the same procedure as a lumbar puncture. Needles inserted into the back and once it's in place they took some blood from my arm and put that into my back. Had to lay flat for a while after but discharged later that day feeling a million miles better. (This was 14 years ago mind, so this is all "as far as I remember").
It's an absolutely awful feeling and 100% something to get checked out.

Hopingforbetterluck · 17/09/2023 20:55

Have they not offered the possibility of blood patch? I’ve had the same happen to me after a dural puncture and was reluctant to get a blood patch. I was told plenty of fluids and caffeine was supposed to help. I waited it out, drinking red bull and water and it lifted eventually but it took a couple of weeks. I also went mostly deaf in that time.

If she can stay in bed and load up on fluids and caffeine for now I’d contact her care team and ask about a blood patch if it gets any worse. I’m not sure A&E would do anything as it’s the anesthetist who needs to carry out a patch and she would probably be in more pain having to sit up in A&E than staying laid flat.

whatnext3 · 17/09/2023 20:56

absolutely take her. It may need checking out and even if it's a 'normal' side effect, she needs help in getting the pain controlled. She shouldn't be left in such a pain.

irisretic · 17/09/2023 21:17

I had this for a week after a LP. No such thing as a blood patch then but I definitely ask for this for your child.

rubydoobydoo · 17/09/2023 21:27

I was going to say no but no-one told me about a blood patch when this happened to me! Although I wouldn't have wanted to be upright for long enough to actually get to the hospital I don't think.
It really was the most horrendous pain and all I could do was lie flat for about a week until it eased enough to get to the doctors where they gave me strong co-codamol.

I called 101 at the time (or possibly I think it was the old NHS direct then)and the nurse who called me back explained that it was because spinal fluid cushions your brain from your skull, so when you're low on spinal fluid it removes that cushion and your brain is lower and... rubbing on your skull. No wonder it bloody hurts so much!

Hope it eases for your DD soon whether or not you take her in.

Original poster

Tinkerbellone · 17/09/2023 21:27

Thank you for all your replies. I really appreciate it. Things always seem so worse when you're on your own at night! She started vomiting so
I've rung the ward again and now waiting for a Dr to call me back. Xx

OP posts:

EdinaMonsoon · 17/09/2023 21:31

In your situation OP I would take your DD back to the hospital. Post-LP headache is excruciating. I had this after an LP for suspected stroke. The consultant had warned me that I was likely to experience a headache for up to 14 days, which is exactly what happened. By the end of the first week the pain was immense and no amount of OTC meds would touch it. I suffer from migraines and this was definitely worse. I literally got to the point of wanting to (irrationally) bang my head against the wall. Anything to try and make it stop because I felt like I was losing my mind. I contacted A&E to discuss blood patch after reading on MN that it was a possible treatment but was told it wasn't an option at my local hospital. I have no idea why but if I were to ever be in this situation again I would absolutely insist.

therealcookiemonster · 17/09/2023 21:41

@Tinkerbellone hi OP anaesthetist here. I would take her to A&E as at least they can try her on some medication and +/- blood patch.

In the mean time, she needs caffeine and lots of it... if you can give her coke/Pepsi that would be great. they can prescribe caffeine tablets in the hospital and other meds.

also they need to rule out that something else isn't causing the headache

Original poster

Tinkerbellone · 17/09/2023 21:45

@therealcookiemonster thank you.
She's stopped vomiting but the pain is very bad. Hoping a Dr from the ward calls back soon. If not I will take her in.

OP posts:

Hummingbird89 · 17/09/2023 21:48

It does sound like it could be a dural tap and she may need a blood patch, she certainly needs an anaesthetic review. I would take her in if you have no joy with the ward. Even take a big blanket for her to lay on in A&E!

therealcookiemonster · 17/09/2023 21:49

@Tinkerbellone also be wary of any fever just in case of infection...

teachermummyme · 17/09/2023 21:58

I've had lots of experience of LPs and other cerebrospinal fluid issues. What she's got are low pressure headaches, caused by the drop in CSF pressure from the LP. The tell is that they're better (or less awful) when lying down and the vomiting too.
They are indeed excruciating. Definitely take her in. She's not leaking fluid from the LP site is she? That happened once to me and was the cause of the low pressure.

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