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

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  
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Avatar_f_tn
Yes, I've heard when blood patches did not take or hold.... and more than one were required.  The best advice I can give is to: 1 - Stay in contact with your doctor, and 2 - Lie FLAT as much as humanly possible.  CSF leaks can and often do seal on their own without a blood patch.  But, this won't happen unless you lie flat and give it the chance.

God Bless!
Amy
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549269_tn?1236134237
I and a lp done about 4 weeks ago and went in 2 days later for a blood patch.  I was told by to dr doing the patch that sometimes they need to repeat it but she's never had to do more than 2 on a patient.  I hated it so I went home and stayed in bed for the next 2 days, only getting up to go to the bathroom.  

They said that bedrest is good because the CSF leak can heal itself.  I still have headaches if I am up for along time, and a stiff neck.  My neuro gave me neurontin to try for the headaches.  I don't notice a difference yet though. I was also told to drink caffiene or take excedrin migraine.  

GL, hope you feel better
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Avatar_n_tn
I am experiencing similar neck pain and right side headache after 3 rd spinal tap and no luck with medications other than giving temporary relief. please update if something has worked for you.

Thanks
Sen
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976782_tn?1248205630
I also had a blood patch last week and am having neck pain and a headache on the back right side of my head. When I put my hand on my forehead and push with my head against my hand it's instant pain the second I back off the pressure against my hand. I also can push on the top back part of my head straight down and when I release I almost faint. Does anyone know if I need another patch? Please god I hope not. It was awfull but as we all know reading this IT'S BETTER THAN THE HEADACHE WE ALL HAD BEFORE THE BLOOD PATCH. I've broken almost every bone in my body at least twice and I would break them all at the same time before I'll have that headache pain again. Good gosh, I'm surprised more people don't literally die from the pain. I've was in and out of consiosness in the E.R. it was so painful. And no, the blood patch didn't help me learn how to spell any bettttter. lol Godspeed to everyone and pray nobody you know has the spinal fuid leaking headache!!!!!!!!!!  My 75mg fentanyl patch i consistanly wear and 15mg oxycodone every hour combined didn't touch the pain.
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Avatar_f_tn
My 10 year old daughter had a spinal tap Friday afternoon.   Kept her flat on her back until mid-morning Saturday.   Difficulty standing followed by excrutiating headache.   Did some research on line and called the doctor (hospital gave terrible discharge instructions/notice) and decided best to lay her back down for another 24 hours.   Each time she gets up, headache returns.   No longer excrutiating but keeping her from moving around.   We're at post 72 hours now.   Should I wait it out another day or go back to the dreaded ER for the blood patch????
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Avatar_n_tn
I had a LP done on 2-3-10 and had to have a blood patch on 2-6-10 and another on 2-10-10. my spinal migraines are gone. I have a severe back ache and it hurts to sit on the toilet. I get small headaches and blurred vission. My legs feel week and I get light headed often. the last blood patch scaredme away from the ER and I never want to go back. I have to wait will april to getinto a neuologist. should I be worried about this or just wait it out?
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Avatar_n_tn
Hi everyone,
I had a lumbar puncture done 2 1/2months ago, and got tinnitus in both ears the day after. I didn´t have a headache, but severe neck pain. Today I still have tinnitus, and my doctor says that a blood-patch won´t resolve that problem and therefor won´t give me one. Anyone have heard or have experienced same problem. Going crazy here:) Thanks a lot.
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Avatar_n_tn
By the way, I still have the neck pain, if any one has some exp. with that as well. Will a bloodpatch help on that ?
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Avatar_n_tn
Had spinal tap on fri in er.  Went back to er on sat with severe headache, stiffness, dizziness and blurred vision.  Had a blood patch done on sun, which gave 75% instant relief.  By tuesday all the symptoms came back.  Following up with doctor tomorrow to see if I need another blood patch.  Can't take this pain....
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Avatar_f_tn
I had lumbar puncture last Friday because I was having Awful headaches then I went to hospital 3 times after due to severe headaches where I could not stand up or due anything! Dr. Decided to send me to anesthesiologist for blood patch! One day after blood patch I went back to having the severe headaches in front my head around the temporal lobe and bad back pain ! This has been going on for entire week! No meds work and I even been vomiting ! Any advice ???
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Avatar_m_tn
had a spinal tap checking for unknown cause of severe headaches, had a bloodpatch 4 days later, headache not a severe as prior to bloodpatch but now right below the temple and sometimes shoots through right eye socket 9 days later, dr also said may require another patch at the time of the procedure but when called stated caffiene or no-doze, neither working. My pcp stated if a second patch does not work, there is a procedure that requires cutting into the dura and gluing it sealed. Heaven forbid!! Trying to ride it out and hope it heals, over the counter meds just now starting to work a little.
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Avatar_f_tn
I also got tinnitus 2 months ago from an epidural. I think we are just stuck with it. I got the blood patch 4 weeks after the epidural and it didn't help the ringing.
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Avatar_f_tn
many times one will have a headache for a while following a blood patch procedure.  this is due to the pressure change from being so low due to the leaks. once the patches are completed pressure will rise and it takes a while for the pressure to adjust..it should subside with time.  diamox is given to help bring the pressure down until it does.
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Avatar_n_tn
I have exactly same problem. I got headache, dizziness and tinnitus after lumbar puncture 3 1/2 month ago. A bloodpatch help on my headache but the dizziness and tinnitus is still there - dizzynes however slowly improwing. They wont give me another bloodpatch and dont believe the tinnitus is from the lumbar puncture even it came 3 days later. I cant even get another bloodpatch on another hospital because they write in my paper they dont recommand another one. They made a ct-scanning now but cant see anything on it. Anyone who has experience with tinnitus after lumbar puncture and if I went away again and after how long?
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Avatar_m_tn
Hi, how do you feel now?  Is tinnitus gone?
I have the same problem. I had lumbar puncture 6 months ago, and then had headaches. They gave me blood patch, but didn't work well. Almost 6 months now. My headaches are light now, but I have ringing in my right ear. Really worry about how long I can be back to normal:(
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Avatar_n_tn
I was so lucky so I got a bloodpatch more on another hospital and my dizziness improved but not the tinnitus, but I still have some dizzines left too. I really dont hope we have to deal with it the rest of our life. Anyone else who has experience with tinnitus after lumbalpunction and  when did it go away? I got tinnitus 3 days after the lumbalpunction and when they made on of my bloodpatches it start ringing in the other ear as well, so now I have in both ears.
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Avatar_f_tn
It's been 3 months since i had the lumbar puncture and I'm still having daily headaches that's very bothersome in addition to the nausea and ringing in the ear.  Anyone have the same problem and when or did your headaches/tinnitus go away? HELP!!!
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Avatar_f_tn
I posted this on a new thread, but it doesn't seem to generate a response so I'm going to repost it here and hopefully get a reply.

Hi everyone. I had a lumbar puncture done on Aug 15 and got a blood patch done on Aug 18. Like most of you in the forum, I too, came down with severe post lumbar puncture headaches. It's been 3 months already and I still suffer from the daily headaches (about 20 times a day-they come and go). Though mild, they are still very worrisome and bothersome. In addition to the daily headaches, I continue to have nausea and fatigue. The nausea is usually brought on by the smell of food or when I'm eating. As for the fatigue...I feel completely drained throughout the day even though I've had 8 hours asleep. I can't seem to find the energy or the drive to get things done. I have also developed this ringing in the ears (mostly my right ear) called tinnitus that's becoming a constant nuisance and doesn't seem to want to go away! The ringing is especially loud when I'm trying to fall asleep. I should note that, like some of you out there, I too had severe dizziness, vertigo, vomiting right after having had the lumbar puncture. I also had several fainting spells and drops in blood pressure for 2 months after having had the lumbar puncture done.

For all those out there who have had post lumbar puncture headaches and other symptoms and side effects that comes with it, have your headaches ever gone past 3 months and have they completely gone away? Same with the nausea and tinnitus...those who have experienced these symptoms beyond 3 months, have they ever gone away for you? I'm just afraid that all these symptoms are here to stay and I can't imagine living the rest of my life with them! I've been out of work for 3 months already and there doesn't seem to be an end to all of this. Most of all, it's very depressing! Anyone with prolonged headaches/tinnitus/nausea/fatigue...I'd like to hear about your experience and find out if anyone out there is continuing to live with these symptoms. Thanks.
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Avatar_f_tn
Update on my health: So my nausea came back in full force the last 2 weeks and my spinal headaches appear to be the main trigger for my nausea right now. I now have tinnitus in both my ears, not just my right. My left ear seem to be plugged the whole time. The lumbar puncture has really robbed me of my life and I so regret having had the procedure...and it's already been 4 months!
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Avatar_m_tn
I had a LP done on 12/15/14.  Still have a lot of what feels like pressure behind my eyes/ sides of neck etc and also have muffled hearing on and off.  Not necessarily a headache though.  I have an incredible ringing in my ears that can be noticed even in loud rooms.  Never had any of that until after the LP.  Am also wondering "How long".  One thing to note is I have been taken off of some Meds - Gabapentin which might possibly be the cause.  Still have not been off even a week yet and am hopeful for improvement.  I do however, recall finding some study on-line that addressed the ear pressure/ringing issue associated with LP's.  Seems that there are many cases of this happening and most seemed to have cleared up on their own in the matter of weeks and/or months.  So it is something we may have to live with for a time.  What I believe to be most important now is prayer and reassurance from others.  Like me you might have to actually coach your friends and family to give you that reassurance.  But it makes a world of difference.  There is a weird feeling of isolation that we experience in our own heads during trials like this and I now the positive support of others and even from ourselves do help improve our existence during these struggles.  Here is to better times to come.  This it NOT a life sentence.  God Bless.  MP
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Avatar_m_tn
csfleak.org is a very informative site. Please check it out.
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Avatar_f_tn
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.
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Avatar_m_tn
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!
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Avatar_f_tn
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.
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Avatar_m_tn
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!
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Avatar_f_tn
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.
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Avatar_m_tn
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:).
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Avatar_m_tn
I just had a blood patch 5 days ago and it was the worse pain ever and I am Tough!
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Avatar_m_tn
Did it ever go away. I am exactly where you were.
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Avatar_m_tn
Jac where are you now with the pain?  I just had the blood patch 5 days ago. The headache was the result of a lumbar puncture. The pain of the blood patch was excruciating just like the headache. Yesterday it felt like a freight train was running through my head. Today not too bad, tonight not so great. I am staying flat and praying..
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Avatar_f_tn
Hi Sheila. The headaches have never left me. I still get them everyday. I was prescribed nortriptyline by my neurologist. Although the drug did help decrease the intensity of the headaches, I was getting way to many side effects from it (heart racing/palpitations, muscle spasms and hair loss). I stopped taking the drug about 2 weeks ago and have been having a nightmare dealing with withdrawal symptoms even though I was on a low does for a short period of time. I feel as though I took a step back when I decided to take the nori. Once this withdrawal is done with (which seems to be forever), I'm going to try taking supplements...something more natural and see if it helps the headaches (ie. magnesium, vitamin D, vitamin B complex, riboflavin). I really hope you won't end up with long term headaches like me. The lumbar puncture has really blighted my life for the past 8-9 months. Take care.
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