Is anyone Still suffering months after lumber puncture?

Posted , 26 users are following.

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. 

1 like, 46 replies

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  • Posted

    Not sure of the other cases listed, but ang1to10's chronic condition likely had to do with the combination of amitriptyline and codeine. Amitriptyline can have serious side effects, which is why newer medications are usually substituted. Not only that but it does not get along very well with codeine, at all. The two have been known to trigger Serotonin Syndrome, Anticholinergic syndrome, and CNS disturbances and depression. That is probably why your doctor switched it, you will likely start feeling better soon. I seriously doubt it has anything to do with the LPs. LPs do cause headaches and lethargy, due to increased blood volume in the brain, but only for a few hours. cool
  • Posted

    Hi ang1to10

    If you read this. Could you please tell me what your migraine headaches feel like? Are they like radiating headaches that can creep up anywhere on your head on and off throughout the day? That's what mine are like. I get the dull, radiating headaches on the top, side and back of my head throughout the entire day - from the moment I opend my eyes until I fall asleep. I don't understand how I could end up with chronic daily headaches for almost 6 months since the lumbar puncture. And I've also got this terrible ringing in my ears 24/7. Thanks.

    Suffering from Canada

  • Posted

    Hi in feb 2014 i was severely ill. It started with headaches around the forehead and eyes and progressed quickly to around my crown area. I tried to sleep it off as i kept going to gp and being told i had a migraine. (I knew it wasn't as if i slept with a migraine it would have gone when i woke up) It got to the stage where i couldn't breastfeed my newborn baby and i was in bed for days.. to the point where i had a cold black flannel over my eyes and face. I could not stand any light or sound. I was like that for days on and my mum was staying to help with my baby as my partner works long hours. I started being sick i literally thought i was dying.. my mum phone 111 and i was taken to hospital. They suspected a brain hemorrhage so i had a CT scan done which showed it wasnt. I then had to have a lumbar puncture done. It was confirmed that i had Viral Meningitis but unsure of the cause. 3 days later i found i also had shingles. (This was a tiny itchy patch on my back. Which paramedics, 2 nurses and a doctor said was nothing!!)

    Before the lumbar puncture i was talked through the procedure.. and a different doctor came to do it for me along with somebody else may have been an Anesthetist . I was told before i was to lie flat for so many hours after.. this did not happen. They sat me up slightly.

    It is now September 2015. When sat up for longer than 10 minutes(if i am lucky) i get severe pains when i stand up or if i am stood in same position for longer than 10 minutes i go to move and get nasty pains. All this time i have been fobbed off by GP with different painkillers. It seems they were trying to cover the pain but not really getting rid of the problem. My new GP has just sent me for an MRI scan on my lumbar spine 3 wks ago still awaiting my results. I have nasty headaches all the time and often feel sick. I just do not know whats going on but i have a gut feeling something went wrong with that lumbar puncture i felt very strange and it hurt like hell when i had it done. I wonder now if it was the reason the first wk recovering with the IV in i could not walk or stand up properly had to have a wheelchair. I am 24 years old i should be fit and healthy but i just have these gut feelings something's not right. I read the headaches can take up to a year to go away but not sure if that's down to l.p or meningitis. Since the illness i have lost 4 stone. Although joining slimming world may of helped i just do not know if i have something else wrong.

  • Posted

    I had an lp to confirm diagnosis of MS. Got post lp headache and had a blood patch. First person in 6 years according to neurologist. Was off work for a month (self employed so yeah not great.) Headache gone but had very localised pain due to blood patch I thought. Had another MRI, no hematoma or anything suspect.

    Over the next 12 months if I leant into a chest freezer (I run a good business) I would feel quite ill after wards, pressure in head, ringing in ears etc....kind of like a migrane but more like the post lp headache

    Slowly returned to almost normal. I leant into freezer....my partner had been doing this job, so I didn't have to.......I developed what I can only describe as a less intense lp headache....relieved by lying down. 

    It has very very very slowly improved over the course of 3 months. I've not been able to work. I was feeling much better after (coincidentally) taking 

    coenzymeQ10.......then I overdid it.......back to feeling rubbish again.

    So frustrating, especially as I got mine done as a diagnosis for a potentially disabling illness! The irony......neurologist says they would maybe do another blood patch if it gets worse! No answer yet to what happens if it doesn't get better. I'm pretty sure they are blaming it all on ms symptoms. My ms has been inactive since well before the diagnosis......

  • Posted

    Hi there i had a LP done almost 2 years back. The LP was done to confirm MS. the fluids returned clear. I had the blood patch done 3 days after the LP. Since then I have experienced extreme nausea, severe pain on my lower spine and also headaches. I have informed the neurologist and he could not explain it. He said that it would pass and it almost 2 years and nothing has changed.

    ​Some days i cant even work, i jusy lay in bed the whole day. I dont know what to do as the meds didnt help at all. So in my opinion your condition may not even end up improving.

    • Posted

      On way to hospital now for nerve conduction test. Just been 2 years since had my lumbar puncture. Severe headaches bad bain lower back next to or maybe even on spine cannot pin point. Also get stiff back alot of the time. Stil awaiting test results from MRI on brain and lumbar. In meant tome they want me to have 75mg amitryptaine. I want the problem sorted and they just want to mask pain. Sorry quick message as about to get off tram. Feel your pain!
    • Posted

      i am so happy to hear that i am not the only one who has suffered for 2 years. i just dont know how to proceed. what should i ask my neurologist to do?
  • Posted

    Not sure if you are still having issues or even seeing this post, but I had an lp 3 months ago and still have head pain and nausea. Also have constant ringing in my ears. Can anyone else relate?
    • Posted

      I am having same issues after lp, did you see any improvement
  • Edited

    Hello,

    I recently been having very intense pain behind left eye. I have had every test that you can think of done to see what is going on with me. My latest visit in the last 20days was to the ER where the Doc believed I should do a spinal tap to check for meningitis. So I did and everything came back normal but I suffered from the headaches when sitting up and intense ear ringing beginning last night. I already went back to the ER to get a blood patch done on spinal tap which has subsided the massive migraines but I still have ear ringing. To top it all off I still have no answers to what has been going on with the pain behind left eye.

    • Edited

      Sorry to hear of the issues you're having. I recently switched neurologists for another opinion and the new doctor began treating me about a month ago for trigeminal neuralgia. She started me on neurontin and it has helped greatly with the ear ringing and pain. I also had pain behind my eyes and this medication has helped that also. She believes my nerves in my head are enflamed but not sure why. She said she'll have me on the meds for 3 to 6 months and then will try to take me off of them and see if the pain comes back. Google trigeminal and occipital neuralgia and see if the symptoms are similar to what you're dealing with. Its worth a shot. Good luck.

  • Posted

    I had an LP in February and blood patch in early march. Four months later I was still having headache ear ringing nausea and eye pain. I recently switched neurologists for another opinion and the new doctor began treating me about a month ago for trigeminal neuralgia. She started me on neurontin and it has helped greatly with the ear ringing and pain. She believes my nerves in my head are enflamed but not sure why. She said she'll have me on the meds for 3 to 6 months and then will try to take me off of them and see if the pain comes back. Google trigeminal and occipital neuralgia and see if the symptoms are similar to what you're dealing with. Its worth a shot. Good luck.

    • Posted

      Did you get better?  My case is the same as yours. I’ve been dealing with this pain for 5 months now. The meds are not helping.
  • Posted

    I have the same problem more than a year ago do you still suffering from the pain please help
  • Posted

    Hello! I know you posted about your headaches after a lumbar puncture. Did you get better? 

    Unfortunately I’m suffering from the same. After 2 blood patches the headaches are still there. It’s been 5 months and I cannot see the light. I just want my life back. 

    • Posted

      After a few weeks of treatment the symptoms returned so i was referred to a headache specialist who told me he thinks its migraines. He started treating me with amitriptiline and it has been working for the most part. I have come to realize different foods that trigger these 'migraines'. But, i dont think i will ever be convinced that my lumbar puncture is not to blame for my issues. I never had any symptoms like what I've had since the lp. The Dr told me i will probably need to be on meds for the rest of my life. I def feel better but i still have a few bad days each month. Hope you get the help you need. Check to see if there are any headache clinics in your area. Not sure where you live but i see a specialist in the oakland section of pittsburgh. He is part of the university of pitt medical group. Good luck.

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