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stephanie73169 stephanie73169

lumbar puncture procedure - headache still after 3 weeks

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

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  • kyle35847 kyle35847 stephanie73169

    Stephanie,

    I saw this post scouring the Internet and wanted to contact you to see what your outcome and progress has been?

    My wife had an epidural for childbirth which sadly led to spinal headache (dural puncture). She had a blood patch done which sadly failed. Hospital numerous times like yourself got us completely nowhere fast besides multiple deductibles and hospital fees. She takes fioricet and ibuprofen to help dull the pain but has headaches constantly that keep her bed bound and in tears. I'm hoping you can provide some wisdom since it appears you had/have the same issue. Pain management specialist suggest Botox but don't know the full details either. Please help if you can at all. Thank you very much for your time.

    Sincerely,

    Kyle

    • stephanie73169 stephanie73169 kyle35847

      Hi Kyle

      I'm so sorry to hear about your wife having this problem. Tell her I sympathise with her pain! Though having a baby at the same time, that must be even more difficult.

      Firstly, the doctors kept advising me that it was something else rather than just a post lumbar puncture headache, as they advised it usually only goes on for over 3 weeks, but this is wrong, though I'm not a doctor, I did research this and found out a lot of other people had the same problem. It also happened to my cousin. There is also a risk that women between the ages of 18-30 are likely to suffer from this, also another factor that puts you at risk is a low BMI (I am 25 and have a BMI of 18.1 so I was in that risk category).

      The first thing to get the hospital to check for is that your wife is not dehydrated as that makes the headache worse. Also most normal headaches you are advised NOT to have caffeine, though with this type of headache I was told to drink AS MUCH caffeine as I could (not sure if this is an option for your wife, as if she's breast feeding she may not be able to do this), however if she is not breast feeding then get her to drink coffee and red bull or full fat Coke.

      I  was also prescribed medication called Sumatriptan 50mg (this was only after around 2-3 weeks of the severe headache that I was given this), you're only allowed to take 1 tablet a day and ideally you need to take it as soon as you wake up, as it's most effective before your headache is at it's worse, as it's meant to treat the headache 2 hours before it starts. I believe this medication did help me.

      The first time I was hospitalised with the headaches I was put on a drip and given Paracetamol and 2 bags of Saline to rehydrate my body, however a few days after coming home I felt exactly the same. The next time I was hospitalised they put me on oxygen, gave me Aspirin (as this is also meant to help)  and gave me 1 dose of Sumatriptan 50mg (this is used to treat cluster headaches and migraines - I have never had a migraine before just so you know). They sometimes give this medication via a needle punch which is similar to what diabetics have. About 30 minutes after having this tablet, I walked around for the first time in 4 weeks without having a headache (and it's not just a headache, as I'm sure you've seen with your wife - it's difficult to see as your vision blurs and is sensitive to light, you're dizzy and unbalanced, and the intensity in your head is unbearable to the point where you're crying and nothing will help it. I'm not sure if your wife has had vomiting but if I stood for over 5 minutes I would vomit).

      As I could walk around after taking this medication, the hospital discharged me but it unfortunately came back the next day and was just as severe. So I ended up back and forth to the hospital, each time to come away with 1 week's worth of Sumatriptan 50mg and Codeine 30mg (though Codeine can cause headaches after prolonged use so these may be OK at first but then I would advise to use Aspirin once headaches aren't as severe).

      My current progress / situation is that my headaches have now gone (I had the lumbar puncture early May), I get a slight headache from time to time but that's normal and it's not how it was. It took around 6 weeks overall for me to feel completely normal, during that time however it felt like this was never going to happen.

      Other information which may be of use to you, after I was diagnosed with post lumbar headaches, I was told to lie straight and flat as much as I could, drink lots of fluids including lots of caffeine, take the Sumatriptan 50mg and after a week or so then to try to gradually walk around. I did this and over time it helped but it was a very, very slow process (I lay flat for a week, I could then stand for maybe 30 mins-1 hour and it would return, but over time I could stand for longer periods of time). After around a week of being able to stand up for around 3 hours at a time, I did have... (probably not recommended however I want to be fully truthful to you, to be able to help your wife)... a cigarette of majiruana given to me from a friend, which sounds mad but after I had that, that was the very first time that I had a full 24 hours of no headache at all. I did have a 2 more after that (though it was difficult as I don't smoke) over a period of 1 week and I'm not sure if this contributed to anything or whether it was just over time it got better - and it may sound crazy that I did that but I was at the point where I'd of tried anything to make me feel better.

      By the time I received a hospital letter from the hospital for an MRI and CT scan, and also a referral to a neurologist, the headache was gradually getting better, so I met with the consultant who advised to leave the tests and see if it continued to improve, as I wouldn't have shown signs of improvement if it was going to get worse.

      My advice would be to try any of the suggestions above (not telling your wife to smoke weed or anything! I just wanted to be honest that I did that to see if it helped, under a friends recommendations - but the other points I would advise her to do) as you may end up paying loads of money for various scans and treatments, as Doctors say there may be something else going on, only to then find out is all it takes is pain management medication and time for the fluid to restore in the spinal block. A consultant did explain to me, when you have a needle in your spinal block (at the end of your spine) then fluid can leak out which causes an empty pocket, therefore when you stand up, the fluid from your brain leaks down to your spine to that pocket, so the pocket is filled up (rather than just flowing around the head and spine as normal with no empty pockets). Also because your brain is so sensitive and the fluid is travelling down your spine, your head notices that the fluid isn't there protecting your brain anymore, therefore the severe headaches occur. They also explained that the fluid in the bottom of your back is only replaced gradually over time (however it's not back to normal in 2 weeks as they advise you!) and in the meantime you are completely immobile. They do not explain the severity at the time of having these procedures, but these side affects can happen. Everywhere I read it said you would be normal again in 2 weeks and this wasn't the case for me, or my cousin. Though I am small and don't weigh a lot, this did increase my risk of having the post lumbar headaches.

      I know how your wife feels so please pass on my concern (and congrats on the birth of your child) and advise her that though she may not feel it, there is light at the end of the tunnel and she will feel normal again. At the time you don't feel like you ever will, I never thought I would resort to smoking marijuana (and hyponsis! - a friend tried to hypnotize me too though it didn't work!), but I felt that I would never get better.

      I would say it took 6 weeks in total to start to feel normal. I did hear of a procedure that you can get botox injections in your spinal block to fill up the empty pocket, but to save your bills and also risk of infection with this procedure my advice would be to firstly to try the Sumatriptan and caffeine and tell her when it's bad to lie flat as doctors advised me that when you lay flat the fluid isn't trying to fill the pocket so you feel better when lay down.

      I really hope this helps you - I never got any responses from my question! I was desperate so I was researching everything so I really hope my response can be of any use to you. Let me know if you have any questions.

      And ignore Doctors when they say it's not normal to have this still after 2 weeks, my cousin is also small in height too if that helps.

      Kind regards, Steph 

       

    • dawn55882 dawn55882 stephanie73169

      Hi Stephanie,

      Just wanted to say thanks for your post and reassurances that the pain from Post Lumbar P headache will eventually go away - (hopefully - like yours after 6 weeks)

      My daughter is suffering still after three weeks - it's awful to see a fit 30 year old turn into a wreck - and she is getting so unfit and depressed and can't do her career which demands physical effort .

      She is at the stage of being able to walk a bit but as soon as she attempts any effort physically - even Pilates on her back ! the headache returns -

      Wondering if there is a slow leak ???

      Anyway your posts have given a ray of hope that she will mend enough to return to her job before it's too late and she looses her job .

      Best wishes for a healthy happy life

    • CrissyMo CrissyMo kyle35847

      How is your wife now? Did she get better? I truly hope so.. I'm going through a similar experience, I'm 4 weeks pp & had a c-section with spinal. I got the spinal headache & had a failed patch. Decided not to redo the patch & now I'm regretting that. I'm terrified that this is my new life! Please let me know how she is doing & send her my kindest regards!

      Crissy

  • chris04435 chris04435 stephanie73169

    Hi,  I recently went through the same exact thing.  I was wondering if i could compare my headaches to what you were feeling.  It's been a little over a week since I had the lumbar puncture and about 5 days since the blood patch.  I can now sit up in a chair and walk around somewhat ok but i get the really tight neck pain with a headache mixed in.  Sometimes it dissapears for a few seconds then comes back.  Were your headaches bad to the point where you couldn't stay standing at all?  just looking for a benchmark or something to go on.  Doctors here just keep telling me to give it time.

    •  KMRC KMRC chris04435

      Sadly, docs mostly recommend time in these types of headache.  My blood patch worked but I thought I was having an aneurism post spinal tap.  I have migraines and cluster headaches but they are easy next to the post spinal one.  The docs let me suffer for four days before I was taken to the ER, where they did the patch.  Worst headache of my life.  I cannot imagine what I would have done had the patch not worked.  Hang in there, don't bend over or drive while this headache is going on.  The lady with the newborn, she is a saint!  I couldn't take care of myself, much less a child!

    •  KMRC KMRC

      Chrissy Mo,  It was you I was talking about!  I hope you have reliable family and friends to help you during this time.  The c-section is hard enough to get over but having that horrible headache.  Take extra care of yourself and take it as easy as you can.  I sure hope you have an abundance of folks to help you.  (You are going to owe lots of favors once you are well!)

    • CrissyMo CrissyMo KMRC

      It was very hard. My headaches lasted 8 weeks before finally going away. Unfortunately, I developed a staph infection at 6 days post partum & had to take 1600 mg of Bactrim a day for a week. Since then I have not been the same... Dizziness, palpitations, nearly fainting. Man, this has been a nightmare!! Thank you for your kind words! These headaches do take TIME, for some.. A very long time.

  • chris83078 chris83078 stephanie73169

    Hi,

        After my LP I had the worst headache ever. I was told that I'd be ok after lying flat for the 4hrs the Dr stated but the hospital staff did have me elevated slightly after an 1.5hrs and I wonder if this has contributed? Anyway headache was awful upon discharge, so much so I went straight to bed. Paracetamol did nothing...only a cold compress. I tried to contacting hospital & Dr afterwards but they just referred me to each other and I really was left to pick up treatment myself. I could see that many took at least 5 days to resolve, which mine did just about although I'm still very lethargic and have mild-moderate tinnitus and the odd 'stabbing' head pain. For me it's been nearly 2 weeks and I'll be back in work Monday...hopefully with more improvement. I didn't find caffeine did much. A query I have though is my BP spikes occassionally and I have the pressure in my neck/head which is of concern. I hope those that have suffered longer will recover with time. Regards...Chris

  • phillybub phillybub stephanie73169

    So sorry to hear about the headaches , I had a lumbar puncture 4 years ago by s junior who took 30 mins of horrendous pain until I passed out .

    Your meant to lay flat for 4 hours after it but they say me up within 10 mins, needless to say the head pain was unbearable , I walked like crab , vomited, light and smell sensitive and thought my head was going to explode, being in the medical profession I knew something was wrong , I was discharged home after a week still in agony with my head , I went to bed with a cool strip on my forehead , 2 ibuprofen and 2 paracetamols all together , removed my pillows and laid flat for 24 hours only getting up to visit the bathroom , and it cleared my headache , laying flat allows the fluid to reform and gives your brain a chance , hope it works for you aswell as it did for me

  • DarkBison DarkBison stephanie73169

    Hello there, I stumbled upon this thread while googling my symptoms and I thought that I should share as well.

    I'm 26 years of age, 6'6" and weigh 425 and I've had a LP about nine days ago and was not able to sit up or stand the next day after the procedure. The pain in my head was beyond unbearable, so I had to stay lying down for about a week. The pain has subsided for me on the seventh day and I am now able to sit up straight without any headaches. However when I get up to walk from a sitting position and walk around the pounding pain can sometimes be felt in the back of my head that last for a few seconds. From reading what you posted above it could be normal for this to happen weeks after an LP.

    I've been to the hospital and had a CT done with neg results, so I'm guessing I'm in the same boat as you all with the residual post spinal headaches, my neuro says I shouldn't be having headaches from the LP this long, but I beg to differ seeing as I haven't had these symptoms till the LP was preformed. Will be seeing my primary care doc tomorrow, and will keep you all posted on what he says/do. 

    Stay possitive everyone, it gets better, I can vouch for that. Just keep hydrated and try not to bend your back so much and to stay in a supine position as humanly possible. Hoping to whoever is suffering from this to get well soon.

    • CrissyMo CrissyMo DarkBison

      Your doctor will prescribe unnecessary drugs. Don't damage your body with them. My headaches lasted 8 weeks... Doc said it wasnt spinal.. That maybe the stress of the spinal triggered me to have a residual headache. Lmao. Yeah right. I have 0 history of headaches or migraines. They will go away, but in rhe meqn time... Magnesium is a NATURAL relaxer & pain reliever. Give it a go.

    • DarkBison DarkBison CrissyMo

      Yeah, my neuro wanted to stick me with needles into my muscle, but I don't want anymore big needles being stabbed into my body. But my doc wants me to do a Sleep Study to see if a lack of oxygen at night might be the cause of the head pain in the back of my head.

    • CrissyMo CrissyMo DarkBison

      You will be in my prayers. I suffered for 2 months with the headache (mostly in the back of my head). Finally, it just went away. I was so stressed out, crying about it. I was so afraid it was my new life.. I already have tons of issues. I didnt need one more.

    • AmaiNeiko AmaiNeiko DarkBison

      How are you doing, did your headaches ever go away completely? I'm scheduled for an EMG with my neurologist in a a little over month for some nerve issues post taking ciprofloxacin. I've also been told I have mild obstructive sleep apnea and need to do a cpap fitting but I don't know if I can do anything with how bad these headaches are. Will they ever go away completely?

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