1. Community
  2. Tests and investigations
  3. Lumbar Puncture

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

Prev Next
  • damien_53945
    damien_53945 stephanie73169

    Posted

    Hi I had mine done 3 days ago started to get really bad headach hour after I got home really bad if I ly down they go but soon come bk I can't stand for more than a hour and they put me on codine for the pain witch don't work

    • chris04435
      chris04435 damien_53945

      Posted

      you have to stay laying down and drink a lot of fluids. I saw 3 doctors all of which said I was just having migrains and gave me pain meds which did nothing. It took me a little over 10 days of laying in a bed and couch to be able to stand up and move around. 
    • chris04435
      chris04435 damien_53945

      Posted

      thankfully i had 2 weeks vacation that I blew through but it didn't help the stress. It's crazy you have to learn about things on the Internet over a Doctor. I am still expericing issues from that 2 weeks a year later.

  • AmaiNeiko
    AmaiNeiko stephanie73169

    Posted

    Hi, I recently had a lumbar puncture on the 10th of October 2016, so it's been just a few days since. The headaches started the evening of the 11th and have been getting worse. I have intense pressure like in the sinuses, behind my eyes, and back of my head. Dizziness and nausea, and it hurts especially worse in the back of my head when I cough or sneeze. I have intense pressure and pain trying to push when I use the restroom. I get slight relief when I lay down. I'm too scared to get a blood patch because I'm already have nerve issues and do not want to chance any more complications. I weigh 184lbs for 5ft I am obese. I'm scared this will not go away because my doctor said he's seen patients who have this last for months. I'm trying to stay hydrated but use the restroom frequently when I drink too much. They gave me Tylenol with codeine but I do not want to depend on it much and would rather take extra strength Tylenol. Im seeing a neurologist in Dec. for EMG testing, for other reasons not the headaches and a rheumatologist on the 25th this month again for other reasons.

    I'm sharing all this in hopes for tips on how to increase my chances of healing. I read it could last up to 6 weeks then another person who's had it for 8 weeks. Anybody ever have it last much longer? I don't want to be dependent on pain killers everyday for the rest of my life for these headaches.

    • P3ACHES
      P3ACHES AmaiNeiko

      Posted

      I had mine done on October 11,2016 due to severe headaches. My question is did the Tylenol with codeine work? Lying down there is just a ache and nausea , but o boy don't let me stand or sit too long! They told me that I shouldn't experience the headaches because I laid flat for over 2 hours afterwards!!!

    • AmaiNeiko
      AmaiNeiko P3ACHES

      Posted

      Sorry I haven't taken it just extra strength Tylenol. If you have trouble sleeping and want the pain relief then it would work for that. I have the neausea and aches too even when I lay down. My doctor/nurses basically said the same thing they only said to lay flat for 2 hours otherwise I'll get a big headaches, hey nevertheless warned me that  days later I'd be stuck with these severe crippling headaches. I spoke to a friend and she said she had a difficult spinal tap done when she was 18 and it took 6 weeks to heal. During that time she was told to consume as much caffeine as she could to help heal the tissue around the spine or something like that so she drank Mountain Dew, green tea, and ate chocolate covered coffee beans the whole time with bed rest. That has made me a little hopeful but then I've seen others who say they've been suffering for 4 months to 2 years and it scares me.

  • desmond74976
    desmond74976 stephanie73169

    Posted

    Morning Stephanie. I had lumber puncture a week ago. And ever since I've suffer from sereve headache. I been to hospital stopped in 4 days. Headache still the same. I've been discharge as doc say it will get better in couple of weeks. What a joke

  • karen_25975
    karen_25975 stephanie73169

    Posted

    Hi I got lumbar puncture five months ago and a blood patch eventually five weeks ago still suffering with headaches lying flat writing this I get maybe two ok days then back bad again it seems never ending now
  • hannah06096
    hannah06096 stephanie73169

    Posted

    Hi. I have recently had a lumber puncture, to test for meningitis and 1 week on I am suffering from severe headaches, sickness, dizziness. It is terrible!!! I have been giving paracetamol, 5l of fluids and I still feel rotten. I can't stand up for longer than 5 minutes without fainting! Can anyone advise...I have been in hospital since Saturday I came in via the ambulance and they want to discharge me tomorrow as there is nothing more they can do. I feel terrible and no better than I was when I came in. Can anyone help on what I can do? I feel absolutely rotten and nobody has any answers.....HELP sad

    • desmond74976
      desmond74976 hannah06096

      Posted

      Hi hannah I know exactly how u feel. I had this procedure in September 16 for headaches. I was in complete agony .like you I could not stand up.dizzy all the time. I was admitted to hospital the following day as was getting worse. I had all test all clear. They sent me home with paracetamol and said I would be better within 4 weeks if not they would do a blood patch with is same procedure they just put back in you what they took out.but within 4 weeks of rest and plenty water iwas fine.I know it scary that you feel the way you do but trust me it will pass.let me know how you get on .get better soon
    • chris04435
      chris04435 hannah06096

      Posted

      If they make you go home just plan on laying flat for a long time. I had my back punctured a few times but for me it took about 2 solid weeks until I could stand. If it doesn't ease up after a couple more days you could get a blood patch but it'll seal

      Up soon.

    • hannah06096
      hannah06096 desmond74976

      Posted

      I feel rotten! I collapsed on Saturday and had to get ambulance had no idea what it was I keep fainting I have been in for 3 days now and want to send me home tomorrow. I have heard that the blood patch helps. I can't go home the way I feel, I physically can't stand up I have just laid here for days it's terrible. Thanks for your help everyone smile

    • lindajp6
      lindajp6 desmond74976

      Posted

      Did you get gradually better in those 4 weeks or just felt better at the end? I am on week 3 and miserable. Had a myelogram and next day severe headache and nausea. Been hospitalized two times, they want it to seal on own. Gave me IV caffeine. Twice they were going to do blood patch but felt high risk since I have a spinal implant and cancelled patch.  Ringing in my ears is so loud, also hurts where puncture done. I just feel like this will never get better. 
    • chris04435
      chris04435 lindajp6

      Posted

      For me, I felt the same until I woke up one day and could stand. I babied myself and took it slow but it just seemed all of a sudden. My ear ringing lasted for almost a year. It comes and goes but was really bad early mornings lying in bed on my side. It will get better just takes some time.
    • lindajp6
      lindajp6 chris04435

      Posted

      Thank you for letting me know how it was for you. I am so discouraged because I felt it would get better gradually and I am not. It does make sense it would be better all of sudden, since it seals then. Did you lay flat on your back all that time?  They didn't tell me to lay flat on back, just bed fast..I have been laying on side, I am wondering if should try to lay flat more. 

    • hannah06096
      hannah06096 lindajp6

      Posted

      Hi, had my lumber puncture last Tuesday and I am still having symptoms. I was great the day following it then things for really bad, I was in hospital for 5 days. Had oral morphine and 5l x of Iv fluid. I definitely do feel better than I did but definitely not right...dr said can take a number of weeks. Still very dizzy, only resolves when I lay flat and. Y head just pounds 24/7-nothing really helps. Refused to do anything, just said I have to be patient...it takes time! Could feel like this for another couple of weeks sad absolutely terrible xx

    • Christinacph
      Christinacph desmond74976

      Posted

      I had same problem as you in 4 years now fainting everyday day and cant get any help at all and hospital denies me more bloodpatch. Not to make you scared just telling you I am in same boat and no idea what to do. Hope anybody can help where to get/buy a bloodpatch more?
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.