lumbar puncture procedure - headache still after 3 weeks

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 

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

Crissy

Stephanie it's a year ago now

Are you feeling normal? I'm so desperate to find an answer to the same problem

hi kyle, did your wife got recovered? i am in the same situation now. spinal headache because of the epidural during labor last month. and the blood patch failed. could you pls reply?

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.

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.

No I haven't had this prior to the LP.

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?