Post LP Headache - How bad does it have to get...

[Sarahsmom46]

...before you agree to the blood patch?

I just had my LP 2 days ago.  I probably should have just did the LP and went home to recover from it, but no, I asked if we could get the apheresis done the same day.  Then went off to stay in a nearby hotel for the night so I can come the next morning my my 1.5 hour spinal MRI.  I arranged the tests this way so I didn't have to take too much time off work, something that is a sore subject in my agency right now with our crazy workload.

I have read so many of your guys' posts on post-LP headaches, took all the advice I could get, and yet I still have this vice grip around my head every time I sit up.  The neurologist told me yesterday that if its not gone by Monday to call in and he'll get me back there for a blood patch.  I'm trying to avoid that by drinking lots of water, caffeine drinks, lying down, etc.  

So, my questions to you wise wonderful people are:
1. How long do you put up with the pain before you finally agree to the blood patch?  
2. For those who have done it, did it work?  
3. Is there anything else I can be doing to deal with the pain?

Any advice would be most appreciated.  

Julie

[PeninaD]

Wow, when DD had her first LP, they insisted that she drink before coming in, then made her drink almost a quart in the short procedure unit before they took her in to Interventional Radiology.  After, they would not let her up for over an hour and made her drink more, along with a few animal crackers, PLUS they had her go to the bathroom and lay down a bit longer before they put her in a wheelchair (she was on fall precautions by that stage in her attack).

Still, she ended up so bad, so anorexic/vomiting from the headaches that 5 days later she was admitted for three days and had the blood patch, with really good results.

Her next LP was done elsewhere, in patient, and the headaches were milder, and gone in 2 days.  No blood patch needed, but they evaluated her daily to make sure.

[kat2wolf]

I couldn't hydrate before because they told me after 5:30 AM, I could have nothing to drink. So I had nothing to drink from the time I went to bed until 12:30 PM (after the procedure). They should also be more specific about what "taking it easy" means. I was told to keep laying flat for the rest of the day and to take it easy the next day. That means different things to different people. I had no idea how these headaches could be. I had my LP done Monday...the 1st few days were the worse. Now I get headaches a couple times a day.

[maxthecat43]

Be sure to be very well hydrated before the procedure, this seems to help a lot.  I've had two, and aside from a terrible backache I was fine.  
1 hydrate before and after
2 coffee after-not sure why, but it helps
3 stay as flat as possible for twenty-four hours after

Hopefully, this will be done under floroscopy, and by the best qualified person.  No guarantees, of course- but I was fine without any medical intervention both times.

I hope it goes well.
Tammy

[Maks322]

Hi
I had an LP in July and got an awful headache.  The assistant that did the procedure insisted that it was just a headache not a spinal headache.  It wasn't until I got a sympathetic person to answer the phone did I get my neuro to call me back and tell me to immediately go get a blood patch.  Problem was it was really late in the day on a Friday and the anesthesiologist was all alone and it looked like it should be a 2 person job.   Needless to say it didn't work for me.  However I would do it again.  The data is valuable.  I would get my neuro's attention sooner even if I have my husband go to his office.    Get the blood patch.  Odds are it will make it better.  
Best of luck
Maureen

[talbot67]

Hi, I know it was a few years ago that you had a spinal tap, but I'm due to have one on Monday 15th October & am worried after reading all the horror story's regarding pain and headaches. Is it as bad as it sounds? Thankyou.

Tracy

[Lulu54]

Ess,
I would land on your side of the column and I wrote about my LP experience in my journal for easy reference.  I had absolutely no problems and wouldn't hesitate to do it again if it were with the same doctor!

A poll is a good idea.
Lulu

[Khiba]

Do a poll!! I had a great experience with lumbar puncture and no problems afterward.

Khiba

[sllowe]

Hey Ess,

I agree that a poll would be good.  What sticks in my mind about mine is one thing in particular that could have contributed, though I've no concrete evidence to speak in fact if that is why I got the leak.  

I was under no sedation, and while the guy was removing the spinal fluid, he had me bear down.

He specifically said doing so would "make it come out quicker."  It's just my crazy theory, but I think it contributed to the leak, because everthing else went well.  I know I should of posted this on another thread, as we are still waiting to hear if Julie went for the patch, but if I didn't get this to you in this way, I'd forget...lol Maybe we can ask if there anyone else experienced anything hokey like that.

ttys,
Shell  

[essdipity]

In the 16 months I've been a member here (so glad!), we've had so many discussions about LPs that I couldn't begin to count them. So many people with bad reactions. But where are the people with GOOD outcomes? I'm one. LP done at a hospital by a highly skilled doctor who used flouroscopy. I had no sedation. I lay there for an hour as instructed, got up and drove myself home. Period.

No headache, no problems, no further lying down. Hope I never have to have another one, cuz you never know. But if I do, I'll find the same doctor for sure.

I'm thinking of devising a poll here about LP procedures (not findings). I think many new users may be frightened, since all we read about are the negatives. There are loads of positives!

ess

[sllowe]

It's a leak. You lay flat it subsides, you sit or stand - vice grips to the scull and neck.

Spinal fluid only replenishes itself a couple times a day. So the leak causes an imbalance of fluid in your CNS.

Only option besides laying flat for at least 24 hrs is to get the blood patch.

I layed for about 48 hrs and only got up to potty and eat.  It did finally subside, but it took days. Like you it took a couple days to come on and by the time I was in my bed talking to my Dr. there was no way I was going to get up.

Not so sure what you are going to do today, but I have heard of the instant relief in the patch.  

I'm sorry you got it, girl.  I feel your pain.

If you don't go today, stay flat durnnit!!!!!!!!!!

(((hugs)))
shell

[buriedinfur]

My neuro kicked me out of the bed pretty much right away saying that you didn't need to lay down. I had to sit up long enough to go downstairs and get blood drawn. After that I did stay home laying down the whole day. 2 days later...major headache. Then I called him and he said basically that he'd never had to do a blood patch and I would just get over it and to take oxycodone. So...it never went. 7 days later I talked to him again (christmas eve) and he said to call him the day after christmas if it didn't go. Then I came in boxing day and he tried giving me drugs thinking it was a migraine.

I know migraines tyvm.

THEN I had to come back the day after that to get my blood patch. I didn't want to say this right away (in case I scared poor sarahsmom) but I'm a hard hit. They'd already killed a few veins trying to get an IV in for the meds the day before. Luckily they left the IV in so I could get the drugs for it in through that. But the poor anethetist...I warned them all and they said he could get blood from a stone. Well I was marble. I got several pokes in both arms (including the IV which collapsed), several in my foot, one in my neck and then the final one in my groin that finally yeilded blood. The dr was nearly having a nervous breakdown at that point because he felt so bad for me. They couldn't give me the extra drugs he wanted to give me because the IV got yanked when he was trying to draw blood through it.

But that patch was wonderful. I was all better when I left an hour after it.

[Fluffysmom]

Gee, my nurse made me get up and use the bathroom after only using the bedpan once (I have a very active bladder).  I argued with her, knowing that I was supposed to be lying flat for at least an hour, preferably more.  She told me that I would be leaving soon anyway, so I might as well get up.  It had been like 40 min.

Julie, I have a friend that works in the hospital system, who gave me the interventional radiologist's  number after I had gotten the run-around when I was in such pain.  The IR was really ticked off, and demanded to know where I'd gotten his number.  I just said that I know someone in the system, and moved on to "What are we going to do now?"  It was fun, though! tee hee!

I hope you're able to get a blood patch soon if you're not improving; I don't want you to be in pain like that!

When you're lying flat, make sure you're not twisted or bent at all; I was lying on the couch, and found out I had been at the wrong angle, which my back hurt as well as my head hurt worse.  I went back to bed with my cooler of drinks and snacks that my roommate had help me put together.

Be well, soon

Kathy

[Khiba]

Bless your hearts!!! I really feel for y'all! I was so lucky I didn't get the headache.. I had my LP in day surgery area at the local hospital and the nurses would not let me even get up to pee for 4 hours after the procedure! I was told to go home and stay flat except for the necessaries for another 24 hours which I did and I drank lots of water. I hope I never have to have another LP but I think the good care and advice from the nurses prevented the headache and blood patch. They also said tylenol only should I get one.

Julie, hang in there!
Khiba

[fortywhat2]

I had an LP 7/08 and just a slight headache, yeah.  But my neuro made me lie flat for an hour before I left, lie flat in the car, and stay flat for 2 days at home.  I know it's too late for that but... she told me drink lots of "water" not anything caffinated.  Maybe that will help.
Debbie
~live as if all your dreams came true"

[EL18]

Julie,

I saw your post and had to reply and see how you are?  I was left with a LP headache for over 4weeks back in 2007 until they finally gave me a blood patch.  Prior to this I took all the advice give...drink caffeine, lie flat etc etc...nothing worked.  My advice.....DEMAND the blood patch.  

Good luck

Em x

[Deb61]

The LP headache can last a long time.  Like Sunny, I had mine about two weeks.  Then mercifully, it was gone one day when I got up to go to the bathroom.  I don't think I could have lasted another day, and was horribly depressed.  It does seem to get worse as time goes on, so I'd get the patch like most everyone recommended.

Take care, sweetie.
Deb  

[Sarahsmom46]

I remember what you went through and am so glad to hear from you on this.  I can't believe they didn't do a patch on you.  Such barbarians.  I know what you mean by no pillows, no elevation of the head.  It makes a difference to lay completely flat, but it is soooo uncomfortable.  I sure wish I had kept that water jug with the straw that they gave me in the day hospital.  Oh well.  

Did you have the pain behind your eyes too?

Thanks so much for your message.

Julie

[Sunnytoday]

Julie, I had my headache almost two weeks... becuase they wouldn't patch mine. I was all of this by my doctor "lay flat. By flat that mean NO COUCH... NO PILLOWS!! flat as a BOARD!!! NO GETTTING UP! If you do you put pressure on that tiny hole in the spine and it won't heal as fast. If you have to get up, try bend at the waist to very gently to help releive the pressure and walking like a cave-man. Have some-one bring everything to you and drink out of your cup with a straw laying flat, don't lift your head." this all did help some.... but it just takes time to heal... so if you can, do all this and then get that patch!!
~Sunnytoday~

[Sarahsmom46]

I'm no better today than yesterday except that I'm not out running around and am sticking close to the couch and bed.  

Heather - In answer to your question about why they don't do it as part of the LP procedure, I asked the doctor the same question and he said that doing a blood patch in the first 24 hours after the procedure does not work or is much less effective or something to that nature.  

Kathy - Tell me girl, how did you sneak access to the doctor's direct line?  You are so resourceful.  I like that idea.

Buried - Wow 10 days.  I would probably pull all my hair out by then.  You are such a trooper to wait 10 days.  

Thanks you guys.

-Julie

[Heather3418]

I wonder why they do the blood patch as part of the LP procedure, since the majority of patients have the bad headaches?  I have never had the blood patch done, so I am not well versed with what the procedure entails.

I too, vote for not waiting and going ahead to get the blood patch done.  Certainly in today's medical world, they could come up with something instantly after the LP is done.  Is the blood patch the only way?

Heather

[Fluffysmom]

Go for the patch.  I got mine on the third day; only because it took a day to pin down my neurologist and the interventional radiologist (after I sneaked access to his direct line), and then got hold of the anesthesiologist to do my blood patch.

She was wonderful, worked in pediatrics, was very caring, had a delicate touch, so that I scarcely knew when she drew my blood or injected it.  The relief was instant.  She had given me some relaxant and pain stuff in my IV, but I was alert enough to know what was going on.

So, I vote for not waiting.  The pain is to excruciating to live with when its so simple to fix.

Take it easy,

Kathy

[buriedinfur]

Get the patch. I waited 10 days and there was no improvement - in fact I think it got worse. It's like magic. Waiting for me just prolonged the agony.

[sunshine8]

I had an LP which went great and stayed flat for the entire day. The following day I was throwing my best friend a baby shower. I was sore, but other than that felt great. I was pretty stupid and carried everything out to the car and such, and even stayed on my feet for the entire shower. Wow, was that not a good idea. I ended up with the worst headache of my life that only got beter when I layed flat. Two days later, I went in for the blood patch. I had horrible nerve pain during the patch, so much that the doc was concerned. My headache relieved immediately. I took it easy the next day, but the day after that my headache returned. I didn't want to go in for another blood patch, but my doctor insisted. This time they did it under x-ray and noticed I had some disc problems. This is probobly why I had the nerve pain when they injected the blood. Once again my headache went away, but returned the day after when I returned to work.

My headache gradually went away after another full week of taking it easy.  The Neuro and anesthesiologist both agreed that I probobly did too much too soon, and that for some reason the blod patches did not hold. They insist that I was a rare case.

I had never had a migrain before this, so I have no idea how bad that is, but this headache was horrendous!  If I were you, I would get the blood patch. Most people I have talked to get better fast with the blood patch.

Fell better!

[Janette2836]

I had a consult with a doctor who does the blood patch & he said that he has seen people with the LP headache for 6 weeks - yes that is right - WEEKS not DAYS!  I opted to not have the patch & my headache was there for a week!  If I had to do it all over again I would get the patch right away instead of waiting.  In the meantime - stay as flat as possible - only get up to potty if possible!  I KNOW - that is almost impossible but it helped with my vise grip!

Take care of you & get the patch!

Janette