I am also curious to these questions. I have asked a few people but non with PTC, so they weren't able to know if it helps with our cases right away.

Hello, Michelle,

Theoretically you shouldn't have to endure very many LP's. Most of us in here have had more than we ever want to.

Everybody really IS different. LP's are generally used as a diagnostic tool to help figure out what's going on with your body. They aren't indicated for repeated pressure relief (usually), unless it's an emergency situation. LP's are generally contraindicated in people with high csf pressure, except for those diagnostic purposes.

What to expect really depends on who is doing your LP, and how the procedure goes. Is flouroscopy (x-ray) being used?

The most usual method the doctor or nurse will have you lay on your side on the table, curled up. They'll numb you up with local anesthetic to make things easier. Then the main needle and you'll feel a weird pressure feeling at the needle site. Then ideally they'll have you straighten out your legs just a little so your legs are slightly bent. Then the dr. measures your opening pressure. You won't feel them doing this. Then some csf is drained off to be tested and to lower your pressure. Then the needle is out and a bandaid is on.

Afterwards you'll need to lie flat for a couple of hours, just getting up to use the bathroom. Then take it easy for a day or so. If you don't you risk a csf leak and a major low pressure headache.

If an x-ray is used it helps guide the needle in. Particularly helpful with overweight individuals.

There are some things that will help make the LP more accurate so that it doesn't have to be repeated right away:
= It is taken laying down on your side with your knees slightly bent, not on your stomach or sitting up. (you don't have a lot of control over this one)
= Try to breathe normally
- Relax your muscles, relax yourself
- Take your meds as normal, don't drink caffiene or alcohol before the procedure.

Just in case you may want to have caffeine at home for afterwards. It helps with a low pressure headache. Coffee, mountain dew, energy drink, etc. You'll know if it's a low pressure headache from a leak if it gets worsse when you stand up, better when you lay down.

My best LPs were easy - not too painful, pretty quick, no low pressure headache, felt GREAT for a day!

My worst LP (at mayo clinic) the nurse practitioner poked me with the needle so many times I lost count. She hit a nerve somewhere between 7-10 times and my leg still hurt from it a week later. I had a low pressure headache that lasted that day and night, gone the next day. Ugh.

Most LP's are the ordinary variety. It hurts a little but not bad, no low pressure headache, some period of time of symptom-free living.

The best part of all - some people have one LP and they go into remission. I don't know what % of people, but the possibility exists!

Uh, oh. I wrote a novel.

P.S. Some of the symptom relief was immediate - while i was on the table. Some symptoms took a couple of hours to get better. For example my ears stopped ringing right away. My headache took a few hours to go away completely. It wasn't like SNAP! Headache suddenly gone. My head felt significantly lighter right away.

they did mine under xray so I could not eat because they use meds that make you calm. they could not do it in the dr office because of my weight, I felt safer doing it under the xray anyways. I was laying on my stomach the whole procedure, I guess thats not the best diagnostic for IIH but at this point its too late lol. I have only had 1 lp since april of 2011 when I started having symptoms. I stopped having panic attacks immediately and felt amazing soon after. I was pretty sore for a week probably and felt dizzy for a bit when standing up and sitting down or moving too fast. I followed everyone elses advice on here where they told me to lay down for 24 hours even in the car on the way home, so have someone bring you! bring a pillow. because mine was under xray they had me lay there for a hour or 2 and watch me before they let me go home.
The lp itself isnt too horrible. You probably will loose feeling in your leg or legs, this happens and nothing can be done about it. mine hurt pretty bad for probably a minute because they hit a nerve so they can hit the right spot, and they pumped me with more meds and it helped a little. I guess it all matters if your having it under xray or not, mine was more of a surgery procedure than just routine dr office visit

thank you for all the information, I is very helpful to know what Im looking at, never having a lp before. thanks

I have had two and they aren't particularly painful because you're numb but I did notice that I was pretty sore the next day. Tylenol and rest helped!

with me i've only needed one( it was to dx me) they did it with x-ray... and they hit a nerve ouch but other then that it wasn't bad.

I felt great afterwards, though it was short lived just for the day for me and then the next i started up on diamox ...