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Head issues after lumbar puncture

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krystine77
krystine77

Hello,

I am really hoping somewhere out there can help me. I had a lumbar puncture over 2 weeks ago and was in bed for almost 10 days with a horrible spinal headache. I could not sit up for more than 5 or so minutes at a time. I started to develop nerve symptoms in my head and they will not go away. I have pins and needles/stabbing type feelings that will happen in my head and face. The most concerning is that the entire back of my head feels numb, whether I am lying down or sitting up. I had a CT scan of the head and it came back normal. I talked to my neurologist about my concerns on the blood patch, because anytime I do something invasive, I come out with more issues. He agreed that I may need to hold off on that. I seriously don't know what to do. The major vertigo and spinal headache have gotten much better, but this overall numbness/pressure/pins and needles sensation that I have in my head is very strange and incredibly uncomfortable. Also-I do not have a history of headaches and the spinal pressure headache began about 30 minutes after the procedure and continued to get worse as time went ont. Please let me know if you've had a similar experiene. Thank you!

0 likes, 63 replies

63 Replies

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  • Horsepistol
    Horsepistol krystine77

    Posted

    Hi I know this is long over do response but I am having issues with a medical record that list s symptom as I now discover as coming from a LP. 3 years ago in a research environment Fir Alzheimer’s drug development I endured 3 LP procedures for the advancement of medicine in research. Over the course of the drug and LP’s I developed some side effects the first was the terrible headache know to be related to the procedure. The second was a fogginess sense. This lasted throughout the study. Unfortunately no one provided and conclusive opinion related to the fogginess. However in dealing with the headache two dilutions helped. One was aspirin the other was lots of water. I was informed that the extracted fluid needed to be replaced naturally so that meant body fluid restoration. As a result the use of water diminished and prevented headaches from the other two punctures. The fogginess or haziness took longer but finally I normalized. The problem Zi have now is this symptom is placed under nureopshyciatric condition which is totally false and harmful to properly review of my medical history. This is an ongoing problem. The patient is never right and I have been forceful in my argument. In research it is insidered an adverse event in physician circles it’s a diagnosis right or wrong and carries with it a lifetime of incompetence by professionals refusing to recognize a serious mistake. Any help in removing this from my medical history would be helpful. As far as LP’s, before going for the procedure drink lots of water. Just water not yes not coffee not juice. Pure water. Don’t be stubborn. At least I know it worked for me. Good luck to all
  • brainpain
    brainpain krystine77

    Posted

    I have been having the same issue I get dizzy and vomit neck pain numb finger tips and if I move my head it hurts real bad it feels like i have vertigo I had a lp 5 days ago I drink lots of water I have been laying down pls help pls help me I'm about to loose my job because I drive for like 5 min I have to pull over to vomit

  • ezo422
    ezo422 krystine77

    Posted

    Hi I know it's been long since you wrote of your experience after your lumbar puncture but I really need some help and advice. the reason I had one done as I was having a lot of head pressure feels like a tight band or the reason I had one done as I was having a lot of head pressure feels like a tight band or fullness and I would constantly feel off balance and lightheaded. I put off the lumbar puncture for months due to fear of it. I had a trip to the ER on Monday due to my original problems and they wanted to do a lumbar puncture and they kind of force you into it. I did the lumbar puncture that part wasn't as bad then I laid in the hospital for 2 hours and they just said to me I might have a headache and that was it. that evening I stayed laying down I felt weird I had some feeling of heaviness in my legs. so I went to bed and didn't sleep all night from pain in my lower back. and in the morning when I went to go get up to use the restroom I couldn't even stand up due to such heavy pressure that was on my back my legs and my head and it makes you feel like you're going to pass out. I kept laying down all all of Tuesday and also Wednesday I went to use the bathroom again and came back there was a little bad next to where I sit so I went to move it with my foot and right when I lifted my foot to move it it felt like my brain got sucked down and I felt like I was going to blackout and I started to sweat and got flushed and it felt like it was even hard to take a deep breath. I never had any of these symptoms before lumbar puncture and that's scaring me. Did your symptoms resolve at all and what did you do for them to go away, I would take my normal pressure and and tightness over this any day. Thanks in advance

    • kimberly69878
      kimberly69878 ezo422

      Posted

      Did your symptoms resolve? I had a LP yesterday and I have this tingling sensation on my tongue and it works it way up on my face, tightness on the back of my head, and tingling sensation on my arms and legs. The doctor claim it’s not normal and are trying to tell me it’s my anxiety. It’s not my anxiety bc I never had this problem until after I had my LP. I don’t want to live with thi problem. I just want a solution to this. I pray your problem was resolved 
    • ezo422
      ezo422 kimberly69878

      Posted

      unfortunately no it did not resolve and I'm actually probably 4 months out since I've gotten my lumbar puncture and blood patch . it basically destroyed my life and I've been trying to be positive and keep praying that eventually I will get better but when you're on a wheelchair and Walker it's hard to be positive. everyone keeps saying it'll take time but you'll get better. I don't understand how after the spinal tap I'm not able to stand without feeling like I'm going to blackout. I get this awful stinging burning sensation that goes through my face and brain it feels like my brain is being crushed, severe migraines and it feels like the oxygen of blood supply in my head isn't getting to where it needs to get. I feel so bad for you because I know how bad it is I really hope that you're feeling better.

    • MadelinewithMS
      MadelinewithMS ezo422

      Posted

      ****i am so sorry you are going through this i will keep you in my prayers i had to go through this and do not recommend it to anyone. I read your last comment and i see you got the blood patch ; (((

      They wanted to do that for me and i did not let them because of comments i read that will make it worse. mines lasted like 3 weeks. and it felt like my head wanted to come off my shoulders.

      i pray for a resolution and cure asap.

    • ezo422
      ezo422 MadelinewithMS

      Posted

      thank you so much. I hope that you are doing better now and I'm actually glad that you didn't do the blood patch I wish I didn't do mine because it made everything a hundred times worse . I'll be praying for you and hopefully everything is back to normal with you.

    • r42382
      r42382 kimberly69878

      Posted

      hi there! I know this is old now but hoping you see this and can let me know about tingling and if it improved? I am so scared something is wrong with my spine and i will be paralysed!

    • dani0805
      dani0805 ezo422

      Posted

      ibknow this is old ?? but any updates on you all ? i joined this forum because i am suffering from lumbar puncture leak and blood patch made me a million times worse !!! looking for hope !! wondering if any of you are still on this forum 

  • kimberly69878
    kimberly69878 krystine77

    Posted

    Good afternoon,

    I had my lumbar puncture yesterday and I’m having the same symptoms. The doctors don’t know what to say about it except it’s not normal. They are trying to tell me it’s me stressing, but I know it’s not my stress causing me to feel this numbness tingling sensation on my tongue and face. Do you know what they end up doing with this problem? Did it eventually go away?

    • MadelinewithMS
      MadelinewithMS kimberly69878

      Posted

      ****Hi Kimberly, Im sorry for replying so late how are you feeling now?

      I experienced it for maybe 3 weeks. but did NOT let them do the blood patch... read that it gets worse.

      please let me know how you are doing now.. My problem was getting up after having it done instead of laying flat 2 days.. Are you being diagnosed with anything ?

  • kaylin77431
    kaylin77431 krystine77

    Posted

    Hello. I had a LP 13 days ago. The headache is gone but i am feeling dizzy all the time. I look sick and i have a serious lack of energy. I get tired from even showering for 5 minutes. I am so worried. Had anyone had dizziness? Is it going to go away? I don't know what to do. I am in bed for 2 weeks and i drink plenty of water but i am hopeless.

    • ezo422
      ezo422 kaylin77431

      Posted

      Kristen 77 hasn't replied it's been so long I think to my questions either . unfortunately mine is about 4 months out and I still have the dizziness and I'm still very sick from it . I understand what you mean when you say that you look sick so do I ever since the spinal tap and blood patch I've looked very ill . I wish I could give you the good news that I got better but unfortunately I'm the same and maybe even worse . I know it stinks but just keep resting and listen to your body that's all you can really do . I hope you feel better soon

    • kaylin77431
      kaylin77431 ezo422

      Posted

      Oh my god. 4 months? Did you go to a doctor for the dizziness? I can't live like that. I am so desperate that this is going to be my life from now on. Are you feeling dizzy all the time? Is there something that helps? I don't know what to do 😦

    • ezo422
      ezo422 kaylin77431

      Posted

      know since my LP and the blood patch I spent 10 days in the hospital and not with one doctor would help. They just landed on anxiety and basically it's in my head. so it's funny how you walk into the hospital with your own two feet and then you walk out of so it's funny how you walk into the hospital with your own two feet and then you leave in a wheelchair and disabled but it's all in my head. I haven't gone to anybody yet because I haven't been able to leave the house because I'm constantly because I'm constantly dizzy and I feel like I'm going to pass out. plus I don't trust any more doctors if I had over 20 to 30 doctors in the hospital not care and not take this seriously and not be able to help me then who else is going toplus I don't trust anymore doctors if I had over 20 to 30 doctors in the hospital not care and not take this seriously and not be able to help me then who else is going to help. it's very sad and I feel awful that you have to deal with it too I just pray to God that you don't have to go through what I went through.

    • kaylin77431
      kaylin77431 ezo422

      Posted

      Hey. Please don't give up! Hang in there! I know what is it like to trust no doctors i have a bad experiences myself and i know what is it like to feel like no one really care, but you need to try. I am sorry for the questions but i am constantly in panic. Why is the wheelchair? Is it because of the dizziness or something is wrong with your leg? I hope not! Do you feel dizzy all the time or are there times that you are ok? I think that you need to find someone friend or family to go with you but you need to keep trying to figure out what the hell is going on, maybe after all there is something that can be done. I fee so sad for me, and you, and everyone who is going through this f*****g nightmare. I pray that at the end everything is going to be alright but its hard to believe it sometimes.

    • ezo422
      ezo422 kaylin77431

      Posted

      thank you so much for those kind words and motivation it is greatly appreciated. unfortunately the wheelchair is due to the dizziness and head pressure feeling like my brain is getting electrical shocks I never had this before the lumbar puncture and the blood patch . I also have nerve pain in my left leg and my back is always in a lot of pain now. but I still push myself with the pain in the leg I wouldn't be on a wheelchair if it was just for that. my dizziness is 24/7 sometimes I'll get a break for about a minute and I think oh my God I can't stand up and then it hits me out of nowhere again and I'll get the pressure and the dizziness and feeling off balance and that crushing feeling in the brain stinging in the face and in the head it's a whole bunch of different symptoms at once not sure if you're having those exact same symptoms to. I can't believe how a lumbar puncture and taking the fluid out like that could cause such a horrific feeling and cause somebody to be this ill for so long when they tell you though it's a easy procedure in and out you just have to keep laying down for 2 hours or so or 24 hours and you should be back to normal yeah they are the biggest Liars in the world. anyways this is such a long post and I pray to God that you get better quickly and don't have to suffer. sorry for all the grammar mistakes I was speaking into the mic.

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