Lumbar puncture,then blood patch,now neck pain/headache

[wannabmommy]

I posted  yesterday about some other symptoms(urinating problems)due to the blood patch.I had a lumbar puncture done Friday(I have MS) and then had to go back on Saturday for a blood patch for a spinal headache.My headache went away instantly.This afternoon I started getting a lot of neck pain almost like muscle pain and it went into my head.Now I have a turmendous headache again especially when I sit or stand.Could it be possible that I need another blood patch or could it possibly just be from muscle spasms etc.Do you know of patients that had a blood patch and the headaches went away and came back like a day later?Thank you very much  

[Ball123]

Good that your mri was normal at least:). But your doc should have orderd it with gadolinium as well so that signs of intracranial hypotension could have been checked.

Give the nori some time to work and hopefully you will get better. But keep the csf leak in mind because they don't always give positional headaches and you still have signs of leaking (headaches and tinnitus).

Eventually you will get well, one way or the other:).

[jac84lp]

I had an mri (no gadolinium) of the brain that came back normal. The neurologist refuse to do an mri of my spine to check for leaking because my headaches are no longer postural. I'm just afraid this headache is chronic and have to live with it for the rest of my life. I guess I'll have to wait and see. Feeling frustrated and depressed.  Thanks for your help Ball123. You've been very helpful in helping me understand what I'm going through.

[Ball123]

Sorry to hear that.

Some people need several blood patches or even surgery to fix the dura again. Have you had a brain mri with gadolinium to check for signs of low pressure (that you are still leaking)? I f the headaches changed character after the blood patch then it might be a chronic migraine or new daily persistent headache that was triggered by this ordeal with the leak. But there is also a non-neglectable risk that you are still leaking.

Nortriptylin is very good against these headaches, so it is good that you got it. But it won't help if you are still leaking. So wait a couple of months and if you are better from the drug then it was not the leak. Otherwise you need to check it for sure.

I know that chronic headaches are terrible. And so little is known about them. But have faith, you will get better!

[jac84lp]

I did get an epidural blood patch 3 days after the lumbar puncture.  That took away the postural headaches.  Since getting the blood patch I've been left with daily headaches that won't subside even when lying down. I'm just so afraid that I'll have to deal with these headaches for the rest of my life.  I've been off work for already half a year and pretty much home bound.  I only go out for my doctor's appointments and for little walks whenever my headaches aren't so excruciating.

[Ball123]

Nortriptyline won't work. You need an epidural blood patch.

When they make a lumbar puncture they make a small hole in the "dura", the sack that covers the spine and brain and keeps the cerebrospinal fluid in its place. In some people this hole does not heal so CSF continues to leak out. This causes the pressure inside the skull to drop, especially when you stand or sit up. This condition is called intracranial hypotension (not intracranial hypertension). Symptoms are among others severe headaches and tinnitus.

Medicine can not fix this. The treatment is something called an epidural blood patch. They take some of your own blood and inject it over the hole. The blood helps the dura to heal.

Check out the site for more information.

Good luck!

[jac84lp]

Thanks MIKEYP300 for the support. It's been almost 6 months since my LP and I continue to struggle with daily headaches 50+ times a day. The ringing in my ears have not left and I have noticed I've become very sensitive to sound - so sensitive that I have to wear an ear plug in my right ear. I was prescribed gabapentin at the beginning, but that did nothing for my headaches. Now I'm on nortryptyline. I do pray and hope that we all won't have to struggle with these problems for the rest of our lives.