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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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  • victoria12171
    victoria12171 stephanie73169

    Posted

    Hi there,

    I know this is an old thread but I was wondering if everyone had recovered? 

    I had an LP 10 days ago and have the worst headache ever. I've had 2 blood patches since but I'm concerned that they haven't worked. Will I be like this forever?

    • emrnewell
      emrnewell victoria12171

      Posted

      Hi,

      The short answer for us is yes!! My daughter did recover. It has been 6 months since the lp.

      The long answer is be patient as hard as it is. I was anything but... so I can 100% understand your fears and pain. My daughter had 2 failed blood patches over the course of 6 weeks post lp. The true spinal headaches ended around the 7 week mark and we know that from scans children's hospital used to look at the "highlighted area" around the brain that shows up with low csf cushion. However, her nerves were so inflamed and over stimulated at that point that she went into a longer period of permanent migraine like headaches (until 4 months post lp!!). She had two inpatient hospital stays after that with several neurologists looking after her. Finally around month 5 post lp after a lot of stumped specialists they determined that she may have a nutrient deficiency that both prevented the dura puncture hole to properly heal and the nerves to calm afterwards. Lo and behold she tested positive last month for Celiac so her digestive track is not absorbing nutrients properly. It is a mild case because she has grown fully and is a healthy year round endurance athlete. However looking back vitamin shakes for swimmers have helped her through the years. Had we not had her on those for swimming she may have had more signs other than during a trauma. So.... long story is yes 6 months out she is pretty much fully normal again with the help of time, tests, magnesium supplements, gluten free diet, and continued vitamin shakes. 

      It is scary to say the least but time is your friend.... either it will just heal over on its own soon or doctors will help you find answers. It was really at the 6-8 week mark that doctors felt there was more to her story and started really hunting. Neurologists told us 6 weeks is the mark that the majority of spinal leaks fully heal. It will happen... 

      Hang in there!!!! My heart goes out to you!!! You will heal!

    • Christinacph
      Christinacph victoria12171

      Posted

      I have not recovered and is almost 4 years ago I got the lumbalpunction and got several bloodpatch. The headache is gone but I have still much dizziness and tinnitus and been need 4 years because of that. Cant work at all anymore so is not everyone who recover. But if it is only the headache you have I am almost sure you will do. 
  • matyboyie
    matyboyie stephanie73169

    Posted

    I'm nearly 4 weeks post LP. I don't have a bad headache as such anymore i just got a feeling that my head is full and ringing in the ears also vertigo/dizziness and feeling like I wanna vomit sometimes. I ended up back at the ER last night they were just concerned that my back still hurt so did an mri of my back and that came back fine also had an mri of my brain the week before and that only showed a partial empty sella. this is crazy im starting to think im never gonna feel better. the hospitals haven't even recommend doing a blood patch dunno if its because it's been 4 weeks. I dunno how much longer of this i can take. did anyone else feel like this for this long ?

    • Christinacph
      Christinacph matyboyie

      Posted

      I had like you are saying for almost 4 years now but the lumbalpunction headache was gone. No idea what to do doctors say they can't help so dizzy and ringing in my head all time 

    • matyboyie
      matyboyie Christinacph

      Posted

      its scary stuff and reading online gets me even more scared cause you see stuff like subdural haematomas and tonsillar herniation that can happen after the lp. here i am no better 4 weeks later and feeling like im gonna be a goner any day now and the hospitals aren't even helping.

    • amina27743
      amina27743 matyboyie

      Posted

      Hi how do you feel now? I'm experiencing the same thing I had my lp down a week ago I don't know what to do 

    • Christinacph
      Christinacph

      Posted

      Yes but they make CT and MRI but only of head but not showing any of theese things. My problems I had 4 years now dizziness, tinnitus and almost fainting. Never had this symptoms before came directly after the day of the lumbalpunction. Is getting slowly better but stress makes it much worse, and the jobcenter is really stressing me and dont get any help at all. 
    • matyboyie
      matyboyie amina27743

      Posted

      sorry i can't be a good help on this topic anymore. i thought I had a problems because of my LP but turns out i have a large pineal cyst in my brain thats causing all my problems all along. when I did my research though about the after effects of a lp I think if ur symptoms are still horrid a week after you should go back to where u had it done and request a blood patch because you might have a leak. that should fix the problem.

    • Christinacph
      Christinacph matyboyie

      Posted

      I have tumor too but the symptoms came directly 1 day after the lumbalpunction. The tumor I had in long time and not growing it might ve a combination but doctors just gave me up. They dont think is from tumor 
  • amina27743
    amina27743 stephanie73169

    Posted

    Hi I see that you posted a long time ago but I wanted to know how your feeling now? I had this procedure done 6 days ago and I feel horrible one thing in particular is I feel like my legs and feet and hands are pins and needles and I get very hot. It's a scary feeling along with the severe headaches I don't know what to do

  • yolanda67036
    yolanda67036 stephanie73169

    Posted

    Hi, I would like to say I had a lumbar puncture last Wednesday to rule out meningitis which I had viral meningitis. I was given antibiotics and antivirals and steroids as soon as they found out I had elevated white blood cells in my spinal fluid. I was discharged on Saturday feeling somewhat better but returned the same day 2hrs later with a severe headache whI have scared the mess out of me they kept me for observation. I met a doctor this time that stated she had it before and it took her 2-3 wks to heal. I'm gonna say everybody's body is different and we all handle pain differently also. For me as of yesterday I had to go to the doctors office and I broke down crying when I got there even though I had a ride to and from. My doctor prescribed me gabpentin and caffeine to be honest I have not even picked up the prescription yet I hate any kind of pain killers I'm a let my body do the healing type of person I am taking Tylenol as needed. But today was much better for me I actual got in the shower. My head still feels like it's a lot of pressure and my neck it's weird. Oh and I get car sick and I'm still sensitive to light a little I feel like sometimes my feet and left hand is falling to sleep. I Say heal through it it healing foods mainly a veggie and fruit diet. Next I'm gonna try acupuncture and letting go of stress and just rest your body knows how to heal it self. Anxiety damages us A lot I hope this helps someone I'm not completely healed by no means but letting go of the anxiety of not getting better definitely worked it was a big burden 

  • shay00
    shay00 stephanie73169

    Posted

    Along with everyone else in this discussion I have been experiencing major headaches after the result of a LP after being treated for MS about  a week ago. I was told to lie flat for 3 hours in which I did and I’ve never experienced headaches like this until after I had the LP. For pain I was given Tylenol, Ibuprofen and Firacet. All which have done absolutely nothing to relieve symptoms. This pain is no ordinary headache! It’s in the front and rear of the head surrounding my eye sockets and ears! Like someone threw a trash bag full of books directly at my face! The only relief is when lay completely flat and keep still. Headaches are the worse during the mid day/night. 
  • savanah11200
    savanah11200 stephanie73169

    Posted

    Did your headache going away? What did you do?  I had a spinal headache in August of 2017 and I still have head pain everyday.
  • mark10553
    mark10553 stephanie73169

    Posted

    Hi Stephanie,

    An year ago I was disappointed with a condition called ADEM, for which my doctor prescribed to have the lumbar puncture done. After it was done, I was unable to even put my head in upright posture, le alone sit or stand. Even my hearing had become very sensitive. And eventually after around a week or so the effects began to subside, hearing sensitivity being the last one. Though I feel hearing sensitivity had more to do with how focused my mind was on it.

    I still have minor residual sensations in the head from ADEM, but lumbar puncture was cured within a week or two.

    Hope this information helps.

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