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lumbar puncture procedure - headache still after 3 weeks

Posted , 45 users are following.

stephanie73169
stephanie73169

Hi

I've seen a couple of posts regarding this and wanted to see if anyone had clear advice on what my next step would be.

A summary of my story is;

I had a lumbar puncture 3 weeks ago (nearly 4 now) to test for meningitis. It came back clear and my other symptoms have improved but since the procedure I'm suffering from a severe headache and it's something completely different to any headache I've had before. I have dizziness, vomiting, extreme pain behind my eyes and top of my head, I get really hot and it feels like my ears are going to pop. The only relief is lying down. I can stand for short periods but the severe headaches come back. I've been back to the hospital 4 times now, I've been refused a blood patch as they've advised it was too late to do this procedure. The headache appeared around an hour after the procedure. The top of my neck gets really stiff and achy too. I don't usually get headaches.

I was readmitted back to the hospital and put on an IV saline drip and also paracetamol via a drip too. I had been given 50mg of Sumatriptan which has helped slightly. I've also been put on oxygen and aspirin in hospital too.

My symptoms are improving very slightly but I'm still unable to work. I've been off work now for a month and really need to get back to work as I can't afford to be off. I also have summer plans coming up that I need to be fit and well for. I'm struggling to get back to normal as twice ive tried to walk the shop and ended up vomiting and being in severe pain.

I've been referred to a neurologist as the hospital are useless and advised that they don't know what's wrong as if it was a post lumbar headache it should have gone by now. I think it is still a post lumbar headache. I've tried caffeine too. I do have a low bmi and it says online that it's common to have this side effect of the treatment.

Can anyone advise what was helpful, ive seen someone mention botox - does that need to go into your spine? I'm prepared to do absolutely anything to get back to normal.

Thanks in advance for any response on your experience that you can provide

0 likes, 125 replies

125 Replies

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  • raj2018
    raj2018 stephanie73169

    Posted

    My wife had taken epidural 8 days back and got the same issue where she would get headache while standing or sitting but not while lying down. Six day into dural puncture, she started getting headache even while lying on the bed. Getting up makes it worse. Did anyone else feel pain even while lying in the bed after few days?

    • Johanna91
      Johanna91 raj2018

      Posted

      Hi raj i dont have pain when lying down, just sitting or standing. hope your wife is feeling better.
    • BQjjj
      BQjjj raj2018

      Posted

      hi raj,

      i am facing the same issue for past 4 weeks after my epidural. did your wofe got recovered? kindly reply

  • Johanna91
    Johanna91 stephanie73169

    Posted

    Hi there am from New Zealand, 27 year old and had LP 3 days ago - headaches/nauseousness seems to be getting worse.... really feeling for everyone going through this right now - have never experienced such overwhelming pain in my life. Am hoping these headaches improve gradually with time. thanks and will keep following this post.

     

  • kaylin77431
    kaylin77431 stephanie73169

    Posted

    Hello everyone. You can figure out why am i here. I had the LP done 12 days ago and i am still feeling like s**t. The headache is gone, but i am feeling really dizzy and its all the time. I don't know if this is post LP side effect. I am laying in bed 24/7. I just don't have energy for nothing. Taking a shower is taking so much effort. Please tell me how was with you. Did anyone else had the dizziness and the total lack of energy? Is it normal? Is there anything i can do? When i will be able to feel like a human again? Thanks in advance. Wish you all the best!

  • matt25124
    matt25124 stephanie73169

    Posted

    Hi all,

    Same as Kaylin, you can guess the reason why I'm posting.. I had 3 LP's performed 5 wks ago. I was told by the doctor & registrar that they all failed - they were all very uncomfortable. They sent me home about an hour later.

    From there I had the vomiting, dizziness and as you all know the horrendous headaches. A few days later I went back into hospital and was given the usual meds and treating what most of you seem to have.

    6 days after the original LP I had my 4th LP performed. Again this was a failed one. I was told that my bones were very hard and it was difficult to 'find the right spot.' Again it was a very uncomfortable experience with what seemed like an electric shock shooting into my testicles (this also happened on the first 3 LP's). The good thing is my LP headaches had subsided within an hour of the 4th failed LP. They hadn't gone totally, but they were far better.

    A 5th LP was carried out 8 days after the first 3. This one was x-ray guided and was successful. One of the 5 results came back as positive, so I had a further MRI and CT angiogram which showed showed everything was ok, so I was sent home again. The head ache at this point was only a 2 out of 10 in terms of pain.

    I've been home over 3 wks now. The head aches are still here but have increased to a 7 out of 10. They are constant and are around the left front and behind my eye. They come in waves. When the wave comes the headache peaks, the waves come every minute or so, though if I concentrate on reading or looking the wave comes on immediately.

    I've been back to my GP twice since returning home. First GP seemed like he could not be bothered, gave me codeine And sent me on my way. A wk later I saw another GP who rang the hospital up. The hospital advised not to take Codeine, they advise Naproxen, Paracetamol And Amitriptyline. The hospital refused to accept that the head ache was a post LP one. They said it was a mixture of post LP and migraine. Ive never suffered from Migraine before - a coincidence that I'm suffering now after the LP's.

    Anyway, now over 5 wk on and head ache is still here- not getting any better, still a 7 out of 10. I'm off work and daren't drive. My mode is low and I'm thinking that I may have got these headaches for the rest of my life. Would anyone be able to give me some advice on what to do next, I'm feeling pretty desperate with it all? Many thanks.

  • anya55679
    anya55679 stephanie73169

    Posted

    My husband had a spinal tap about 10 days ago to rule out meningitis. Now his headache is million times worse, he cannot get up or sit upward for more than 15minutes. Dr keep saying drink coffee and water. He cannot function it pains me to see him like this. He is nauseas and vomited. I cant believe it can take up to 8 weeks for him to fully recover.

    • angel89613
      angel89613 anya55679

      Posted

      Hi Anya, i know this is an old post but im suffering from the same symptoms as your husband. I too had a lumbar puncture to test for meningitis, and started with the headaches a day after. Here i am 12 days later and although my headache pain has improved im still dealing with head pressure and eye strain. I truly empathise with everyone on this forum as this condition is very depressing and debilitating. I wanted to ask hows your husband feeling and was he able to recover? If so how long did it take and what steps did he follow? Thank you!

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