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Is anyone Still suffering months after lumber puncture?

Posted , 26 users are following.

ang1to10
ang1to10

Hi 

I had an lp in August. Since then I have been suffering from migrane type headaches and associated nausea. It's left me unable to work. I was taking codine and amytriptalene. That didn't help. Now on pregabalin. This makes my head spin. So far all tests are clear. So it seems that all this is down to the lp.

Anyone in a similar position or now recovered? 

Any comments/advice much appreciated. 

A 

1 like, 46 replies

46 Replies

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  • UK-Ven-medicate
    UK-Ven-medicate ang1to10

    Posted

    Pregablin made my head spin so I stopped it and I cant take codiene so i am on Butrans patchs ( morphine based )
  • jac84lp
    jac84lp ang1to10

    Posted

    Hi. I also had a lumbar puncture procedure performed back in August. Since then, I've been suffering from chonic daily headaches for the last 4 months. I had a blood patch after 3 days of horrid spinal headaches. Though the headaches are now mild, I continue to have the dull/pressure/sharp/radiating headaches that do not subside when lying down. The headaches are not in one particular area of the head. They occur at the top, back and sides of the head and I get them 50+ times a day. I also currently have tinnitus (ringing in my ears and my left ear is clogged half the day). I also had fainting spells, nausea, heart palpitation, numbness in my extremeties, and fatigue for about 3 months. Feeling very frustrated! 
    • jaime37302
      jaime37302 jac84lp

      Posted

      Did the fatigue improve? Do you recommend the blood patch? Thanks...I'm miserable after lp!

  • jac84lp
    jac84lp ang1to10

    Posted

    I also want to add...

    Do you suffer tinnitus as a result of the lumbar puncture? The ringing in my ears are very bothersome especially at night. And I have become very sensitive to sound. Going to a mall and eating at a restaurant has been nearly impossible because of the hustling/bustling sound of the environment that gets amplified in my ears and that makes me dizzy at times. I also noticed that I've been dreaming a lot lately and find myself waking up from an intense dream. Do you have the same problem? I saw 2 neurologists. One prescribed me gabapentin and another nortryptalene, but I was hesitant to take it due to its multiple side effects. 

    • monika51816
      monika51816 jac84lp

      Posted

      Greetings, you have the same story as me and I'm in constant pain. Ive bee five months into this and still in pain with noise in the ears and headaches.... Have you found any relief? Its been 11 months since you have posted. Would like to know how your doing. Best regards

      Mon

    • jac84lp
      jac84lp monika51816

      Posted

      Hi Mon. I'm sorry to hear that you're going through the same thing. Things have not improved for me. My headaches are still very debilitating. I've tried several medications and I'm just getting worse. In addition to the headaches and ear issues I've also developed a balance problem. Things just aren't the same for me anymore. I'm sorry i don't have good news for you. Take care.
    • mich25375
      mich25375 monika51816

      Posted

      Hi monika51816, Can you tell me if your symptoms started immediately following the LP?  And has it improved?  Any medication helping?

      Our situation is very similar, LP performed, Headaches began within hours and hasn't gone away.  headaches are always in same spot, just above ears, and can creep up to the top of head.   Ringing in the ears began approx 3 months after the LP and seems to be getting worse.    Currently on amitriptlyine, gabapentin, and Topamax.  Topamax takes the pain down to 6/10 vs previously it being 8/10 (somedays just unamanageable).   

      Any info you can help me would be great.

    • lauren28780
      lauren28780 mich25375

      Posted

      Hi my name is Lauren I had a lp done 10 days ago but I am still not back at work and I have the ringing ears and feel like I am under water I have iih and so does my mum she was in hospital for a week after her lp but surely I should be feeling better by now I am either on the couch or in bed it frankly getting me down now any advice thanks Lauren
  • jac84lp
    jac84lp ang1to10

    Posted

    Hi. I also had a lumbar puncture procedure performed back in August. Since then, I've been suffering from chonic daily headaches for the last 4 months. I had a blood patch after 3 days of horrid spinal headaches. Though the headaches are now mild, I continue to have the dull/pressure/sharp/radiating headaches that do not subside when lying down. The headaches are not in one particular area of the head. They occur at the top, back and sides of the head and I get them 50+ times a day. I also currently have tinnitus (ringing in my ears and my left ear is clogged half the day). I also had fainting spells, nausea, heart palpitation, numbness in my extremities, and fatigue for about 3 months. Feeling very frustrated! 

    Do you suffer tinnitus as a result of the lumbar puncture? The ringing in my ears are very bothersome especially at night. And I have become very sensitive to sound. Going to a mall and eating at a restaurant has been nearly impossible because of the hustling/bustling sound of the environment that gets amplified in my ears and that makes me dizzy at times. I also noticed that I've been dreaming a lot lately and find myself waking up from an intense dream. Do you have the same problem? I saw 2 neurologists. One prescribed me gabapentin and another nortryptalene, but I was hesitant to take it due to its multiple side effects.

    • mich25375
      mich25375 jac84lp

      Posted

      Hi jac84lp, Your story is very much familiar.  Can you tell me if your symptoms started immediately following the LP?  And has it improved?  Any medication helping?   Our situation is very similar, LP performed, Headaches began within hours and hasnt gone away.  Ringing in the ears began approx 3 months after the LP and seems to be getting worse.    Currently on amitriptlyine, gabapentin, and Topamax.  Topamax takes the pain down to 6/10 vs previously it being 8/10 (somedays just unamanageable).   

      Any info you can help me would be great.

    • Guest
      Guest jac84lp

      Posted

      Hi. I know it's been three years. You may never get this message, but I thought I'd try anyway. I was previously fine except for episodic migraine then suddenly developed terrible debilitating chronic migraine, chronic sensitivity to light (like I got a migraine every day from it), then eventually sound, eventually lost the ability to read without immediate headache, tinnitus, dizziness... it was like my brain was slowly killing itself and no doctor could figure out why. Some even accused me of making up the symptoms, which was super frustrating when I was so sick!

      But then after three years, a lumbar puncture figured out my CSF pressure was too low (same as you after the lumbar puncture probably caused your leak) and I was leaking, which was causing/excerbating my symptoms. No one had ever suggested I lie flat and sure enough it made the headaches milder. I wanted to write you because I wanted to tell you that it took multiple blood patches to get me doing better. The first two brought my pressure up five points, but I still felt like crap and still had positional headaches. It wasn't until they did a myelogram and CT and pinpointed the leak and did a third targeted high volume blood patch directly in the leaking spot that I finally started (3 weeks after the procedure) to recover the ability to read--i.e. seeing snail's pace improvement rather than slowly getting worse. I'm still not "healed" but I don't have a migraine every day either.

      You may have already done this, and sorry if this is unwanted advice, but I found your post while searching for something else, so I just wanted to reach out. Hope you're doing okay.

    • leah80039
      leah80039 Guest

      Posted

      Hi Hannah71122

      I just read your post, I am just now going through all of this.  So it’s been 5 days since LP and 3 days since Blood Patch. I’ve been resting in bed ever since. Off and on I have been feeling better. Headache is pretty much gone but I can still feel the reminisce of one. I stood up and sat upright for an hour yesterday and felt ok. However during this whole recovery time, I have been experiencing nausea and stomach cramps and loose stool. And last night when I thought I was feeling good, I sat at the dinner table eating with my family and all of a sudden I got super dizzy and started feeling my heart beat out of my chest and in my neck and head. It scared me and I had to go lay down. Then I had a super painful stomach cramp and had to to bathroom. Ever since I have had the chills, shaky and my heart is beating like palpitations. Any advice? My dr said she thinks I picked up the flu! But I’m not sure? Should I go back to ER?

    • leah80039
      leah80039 jac84lp

      Posted

      Hi Jac84lp

      Just curious why didn’t you have a second blood patch? 

    • Guest
      Guest leah80039

      Posted

      Gosh, that's a lot different from what I experienced with the stomach cramping. I do have dizziness and did have racing heart, but they thought that could have been due to the nortriptyline I was one (that they later took me off of.) Sorry it took me so long to respond. Are you feeling any better now? What did your doctor say?

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