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lumbar puncture procedure - headache still after 3 weeks

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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

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  • melanie86985
    melanie86985 stephanie73169

    Posted

    Hi Stephanie, I just saw your post looking for anything to help my little on 6 1/2 yrs old she had SP (I guess Drs think it sounds better than Spinal Tap) Her nurologist told us she could get the headaches but they would go away in a couple of days. After about 5 days they seemed to have been gone but now they are back and they are horrific as you well know. She had her LP  4 weeks ago. Well she is still having them. Laying down does help but its hard for a 6 yr old to want to lay down so she gets up to play a little then lays back down. But after reading your story I forgot the doctor did say drink coffee and she love it so I am going to try that. She goes back to her Dr. tommorow to see if its normal. I did just read her test results of her Spinal Fluid and her glucose was low 48... Now Im trying to make sure that isnt from something. But she sure is eatting an starting to show. I have to watch now and insure she doesnt eat the wrong things and how much. Thats hard also.  However the more I read it sounds like it is.  I am happy you are feeling normal again. Man this has been a nightmare. It makes me almost cry seeing her hurt so bad.  Well again I am happy you are some what back to normal.
    • susan32695
      susan32695 melanie86985

      Posted

      Hi there,  my 9 year old son had a LP three weeks ago, and his headache developed 48 hours after the procedure.  The headache had been very intense when he would stand or sit, but that gradually improved. He's able to move around, but has this constant headache.  The doctor said they do not do the blood patch on kids, and to use tylenol or advil, which has no effect on the pain.  After some time, the doctor prescribed Napoxen, but it hasn't helped at all either.  It is very frustrating.  It is also difficult to see a healthy nine year old boy miss school and baseball games because of the pain. We head back to the neurologist in a few days. What a horrible thing this is. 

    • lynsey0838
      lynsey0838 susan32695

      Posted

      This is awful

      You must be so upset seeing him suffer

      Why would they not do the patch? Did they give u any reason ?

      Sending my love to your son

      I feel for him

    • emrnewell
      emrnewell susan32695

      Posted

      I am so sorry your son is going through this! My 14 year old daughter had a spinal tap on Feb 3rd of this year. Previously she was an extremely fit year round endurance athlete in swimming and running. She actually ended up having influenza A but the rapid swab was negative so they tested her for meningitis. That was negative as were all other tests so they ran flu swab one more time and lo and behold she had the flu. The flu came and went in a few days but she developed the spinal headaches 48 hours after tap. Hers were horrible to say the least. Could not even sit up without vomiting. Hospital asked us to wait one week due to being young before having blood patch to determine if her body would heal in its own. She did not so she had the patch 8 days later. It took and was amazing but when she was released to begin activity a week after patch she blew it. Spinal headaches were back. Not as bad as before but definitely back. Waited two weeks this time to see if it resolved itself. Not only did it not resolve but she developed a temple headache that was permanent rather than positional on top of spinal headache. Hospital did a second patch and that took again but temple headache remained. They thought it was just a virus or sinuses so just said to watch it as it should go away in its own. Two weeks later this time she attempted a return to activity after blood patch despite having permanent temple pain still and blew the patch AGAIN!! That led us into our 3 month long journey in and out of two different pediatric hospitals, imaging studies, and 3 different neurologists. Everyone wanted to treat her as a migraine patient. Drug therapy after drug therapy. That created even worse symptoms and she was a mess by the time they were done with her. Now she has SI Joint inflammation tied to drug therapies, permanent temple pain, and residual spinal headache when leaning over or getting up too fast. HOWEVER... here is the good news...try acupuncture! I have never been a believer at all. Honestly... never! However, in desperation we tried it by a recommendation from a friend after the back flared up. I'll tell you what... they got her off all meds except magnesium in TWO treatments! It is no joke!! Apparently in kids it works much faster/better given their young systems and as they treat with needles they are correcting the nerve messages (in ancient Chinese medicine it is called the qi or "chee"wink. I am still somewhat of a skeptic but my daughter went from a disabled hot mess who could barely get through a single school day from all of this to a somewhat happy teen again with only low level (1 on scale of 10) headaches and mild discomfort in lower back. She is not out of the woods yet but we can actually see light at the end of the tunnel! It may or may not work for your son but it is definitely worth a try! I wish someone would have recommended it to me two months ago. Find a Liscened Acupuncturist that truly knows what they are doing though and give it a go. You might be pleasantly surprised...

    • emrnewell
      emrnewell lynsey0838

      Posted

      No. Better after each one. 2nd patch did not resolve the temple pain at all but did spinal headache. Both just did not hold aftercreturn to sports. It was really the hospital and Neuro attempts at stopping the headaches via medicines (both IV and oral) that sent her into a horrible downward spiral versus improvement.
    • lynsey0838
      lynsey0838 emrnewell

      Posted

      I just can't make the decision if to have this or not

      My heads battered

      My headache has gone but still got dizziness pins n needles and sensitive to lights

      I've stopped diazepam now to see if symptoms come back then it'll make me decide to do it

      I'm worried if I leave it that it'll not heal itself and leak forever and the long term leak will cause problems

      But I scared to do it incase I'm worse

    • emrnewell
      emrnewell lynsey0838

      Posted

      The blood patch really did help and both times we thought it healed her... with that said, if you do opt to do the blood patch I would definitely recommend a couple days of bedrest followed by a good month of physical activity/exercise restriction. Anesthesiologist both times told us not worry about bedrest and only need 1-2 weeks of activity restriction but that proved to NOT be long enough.
    • emrnewell
      emrnewell lynsey0838

      Posted

      Also, I am very serious about recommending giving acupuncture a try! I was SHOCKED with the results but it is worth it and non-invasive compared to epidural blood patch. We actually found research studies online as well on a few individuals that were treated with acupuncture for post dural puncture headaches with acupuncture and fully healed on their own quickly by doing so.... it is seriously worth a try!
    • leftyraguza
      leftyraguza emrnewell

      Posted

      have u heard of lingering symptoms like mental fogginess blurry vision with successful blood patch?  i hve had 2 patches and same symptoms.  
    • emrnewell
      emrnewell leftyraguza

      Posted

      Yep. My daughter still has lingering symptoms that come and go. Each day is better though and some days she only has one or two moments of symptoms throughout the entire day. Hers is just moments of head pressure and nausea now. I have read several other stories of people that have said the same... just takes some people several months to fully seal and get your csf levels balanced again. I wouldn't be overly concerned yet but definitely take it slow and rest as much as you can until it all passes. My daughter is a runner and swimmer so this part is KILLING her but we finally learned that patience is key here. Stinks but your body will start to heal itself if you give it time. Acupuncture gave her a huge boost in the right direction though.. I'd say she is about 85% recovered now. Hopefully in a couple weeks she'll be good as new. 🙏🏻

  • leftyraguza
    leftyraguza stephanie73169

    Posted

    hi Step,

    just really want to know if you feel any better and how long did it take? i had lp on 3-28 and got a leak.  blood patch was done mins after the headache occured.  symptoms went away and came back 3 days later and i still have headache not as bad but i feel mentally foggy, me eyes are different (almost like blurry but not so much really cant explain except that it is different) my neck is so stiff and when i move my neck i can hear it (liken it to sand or hair rubbing together).  i went to er and they pretty much said go back to dr that messed you up.  i did get a liter of fluids and caffeine drip. symptoms did not move.  i went back to dr and had a 2nd blood patch and still pretty much the exact same,  i  really hate them going into my back but if i could hear that these symptoms will go away from someone else besides my dr i think i will feel better.  my thing is i dont want any long term effects because i am walking around leaking.  it will be a month since the symptoms returned from the 1st patch and i have no relief from the second blood patch.  so sad you go for help for one thing i create a bigger problem and then you have to practically beg for help after they mess you up!

  • danielle91537
    danielle91537 stephanie73169

    Posted

    Hi my name is Danielle Snyder I had a lumbar puncture on Tuesday and I was fine the day of and than I got these horrible headaches. Mostly in the back and front of my head. All I do is lay down. When I sit up I get shots of pain in my head and I feel nauseous. Please help me.
    • leftyraguza
      leftyraguza danielle91537

      Posted

      hi Danielle,

      you likely have a csf (cerebral spinal fluid leak).  you need to contact your provider. they say take in large amts of  caffeine but that did not help me.  i had 2 blood patches and still have headaches and neck pain.  it is improving but i am still dealing with not doing much or working.  plz contact your provider.

    • lynsey0838
      lynsey0838 danielle91537

      Posted

      Sounds like a csfcleak

      Get bk to your hospital asap

      I'm now 5 months into my leak from a spinal block after c section it's horrendous

      I have brain fog, dizziness 24/7, tinnitus visual problems

      Alls I want to do is lie down

      My life is awful now

      I was so fit and active, the Drs have ruined me

    • lynsey0838
      lynsey0838 danielle91537

      Posted

      It's called a blood patch but it can take a few goes

      Where about ru?

      Ru in uk?

      Pm me lovely

    • leftyraguza
      leftyraguza danielle91537

      Posted

      have you contacted the drs?  a blood patch is when they take blood from your brain out a place like your arm the amt varies and place it in the same place where you had the first inj.  the purpose is for the blood to act like a patch or bandaid to stop the csf from leaking out.  i had to and conts with my symptoms.  idk if i still have a leak i just still feel like i do with head ache and stiff neck.  things i read is that these leaks can be hard to recover from.  if i am not feeling will by the end of this month back to mri and drawing board.
    • BQjjj
      BQjjj lynsey0838

      Posted

      hi lynsey

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

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