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

[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