Pressure and headaches

Hi my son was diagnosed with ICP after xmas , he had a lumbar puncture to remove CSF but unfortunately the neurologist thinks they removed too much resulting in a low pressure headache.

he has a headache 24 hrs a day !! Painkillers only relieve it for short periods maybe 2 hours !! I am very concerned , we have not seen a doctor in at least a month . My son is in bed all the time as he gets dizzy and headache feels much worse when he walks , he is unsteady on his feet and has nausea !!!

he has not been in college since before xmas. 

I am really concerned as he is not getting better. We see the neurologist on Wednesday , '

Hi Steph,

I was diagnosed with IIH a year ago and during the last year have had 9 lumbar punctures and had a VP shunt fitted.

I have tramadol and paracetamol for the head pain and I take them depending on how bad the pain is (max is 2 tablets 4 times a day). At the moment I'm only taking them in the morning and in the evening. I find drinking plenty of water every day actually helps with my pain. If I haven't had enough water my head pain is much worse.

Pressure pain is horrible. It hurts to sneeze, cough etc. First sign of a cough I'm at the gp surgery because I'll be in so much head pain it's debilitating. They give me antibiotics and steroids to open airways and that usually sorts it.

Infection in my shunt has also given me horrible head pain. Fortunately I took myself to a&e and one quick blood test told them I had a coccus infection and they blasted it with IV antibiotics and gave me a load of fluid. They also did a lumbar puncture and tapped my shunt. I was in over night and went home the next day pain free.

If you have to have a LP, don't worry. Once you've had the LP done you should feel almost immediate relief. Unfortunately for me within about 2 weeks after the first LP I started to feel pressure headaches again, but every person is different.

There's a page on here all about Lumbar Punctures which gives you all the technical, why you might have a LP, what can be gained from a LP etc. It's useful to read it if you've never had a LP before.

I'm not a doctor but will tell you from my own experiences what happens when i have a LP. I've had 2 LPs done bedside in hospital. 1 in theatre. 2 in procedure rooms and 4 as an out patient on neurology appointments. I had to lay down on my left side. Expose the lumbar area of my back (pull my top up and drop trousers/pants low enough to expose the area).

They like you to have your back along the edge of the bed with your knees up to your chest and head curled forward (sort of foetal position). Now I'm not slim and this was quite difficult, but I ask them to keep the bed rail up on the side I'm facing. It helps me push out and is handy to hold on to. They ask you to push your bum/bottom of back out because they say it helps open out the lumbar area.

Before they start they will thoroughly clean the area. On me, the doc feels down my spine and presses hard to find the correct spot for the needle. Once they're happy they give lots of local anaesthetic (never enough-I always tell them to give me plenty but it's never enough). You have to keep still. When the doc goes in with the needle, if you have pain let them know, I'm sorry to say it always hurts, but it doesn't take forever and is necessary. Once the needle is in the doc guides it to lumbar cavity, they take it steady, the pain I feel tells them if they're in the right place. They ask which side I can feel the pain, left right or middle? Once, and only once a doc was doing a LP on me an caught something a nerve or something, my left leg which was tucked up, shot straight out, it was like being electrocuted, horrible but only lasted a second. I was more concerned about the needle and not the pain.

Once they have the needle in the right place it doesn't hurt much at all. They take an opening pressure reading and take samples of CSF for testing. Remove needle, clean you up and put a dressing on your back and that's it. They've asked me to lay on my back before leaving for anything from 1-2hours. They will offer you water, make sure you have a drink. And that's about it.

I worried about my first LP, not only because it was all new and completely unknown territory to me, but also because of everything else that was going on with head pain, eyesight etc. If I'd known then what I know now I wouldn't have been worried and it probably would have been a better experience. LPs have got easier and not as painful. You have to go in there calm and relaxed, breathe easy and deep. If you have to have one, you will be fine, try to be as relaxed as you can.

I'd say good luck but you really don't need it. I hope it helps with your head pain. Don't be nervous, keep calm and you'll be fine.