Lumbar puncture - what would you do ?

[Lkakpk]

So I’ve been diagnosed chronic migraine but getting symptoms of iih . Neuro thinks unlikely to be pressure related but rang to say after consideration he will go ahead with lp . Mri was clear . Scared of having lp when not absolutely necessary ( feel it’s being offered to settle my fear of iih due to symptoms )
How painful is it ? Headaches afterward ? Seen so many horror stories scared to go ahead ? So many people ( docs included ) say it’s painful and risky ?

Bump

I’ve had loads, and they’ve never been as bad as I expected. If you do go for one, make sure you stay lying down afterwards to reduce the risk of headache.
It’s your choice if you go ahead, let me know if you have any other questions.

Hi OP - I'm in a very similar situation at the minute! I had iih in my first pregnancy and got all the symptoms of it this time. I had an Lp after I gave birth and honestly it's fine, my headaches went completely after I had it done. It was sore for a couple of hours after but nothing too bad.

I had some local anaesthetic injections last week to try ease my headaches I'm having. They unfortunately haven't worked so I'm heading towards another Lp!

No idea what IIH is but I've had a lumbar puncture when I was sick in hospital. It's quite quick and I'm sure they would be able to give you something for the pain.... I was on strong painkillers so it was more uncomfortable than painful when they did it and it was only uncomfortable for about a day after if I led a certain way. Headache wise I can't comment as I had one anyway but caffeine is supposed to help.

I'm sure the neuro doctor wouldn't say he would go ahead if he thought there was that much risk?

Migraines can be hell of lot worse, they are not pleasant but means to an end. First one made me get up to soon was drinking loads and needed loo. Massive crippling headache for about week failed discharge from hospital and re admitted. Second one drank loads refused move asked for bed pan for least an hour after and was fine.

@Froppysue thanks for replying .. are they painful ? Why do they get such a bad reputation ? What would you compare them too ? Sorry for all questions haha

@TheStickMan did you get any side effects afterwards ? Are they painful ? Thanks so much for replying :)

@AuntieMaggie thanks for replying . How did you find acetal procedure . Much pain ? Any after effects ?

@Akire Thankyou for replying . When you say not pleasant what is not pleasant . I fee a lot say this .. is it the pain of the procedure and if so how painful is it ? Or is it afterwards ? How long does it take to perform ?

I've had a few because I was diagnosed with IIH when pregnant.
Honestly, if I could book myself in for one every couple of months I would. The relief from them is unbelievable. I didn't find it too painful and recovery time was very short

Hi Op
I had a lumbar puncture for iih, I didn't have migraines or headaches as a symptom but it improved my eye issues.
At first I panicked and was going to ask them to stop, I think your body floods with adrenaline because it's alarmed to be touched there, but then I realised it just feels weird, not painful so I relaxed and felt fine after a few mins.
Then she touched a nerve and I felt a sharp burning pain in my knee and back, I said ow and she moved, the pain only lasted about 2 seconds.
I felt quite groggy for 2 days and took them off work as moving around a lot would have made me dizzy. No headaches.
I wouldn't be worried if I had to have one again.
I'm now on acetazolamide which is a more medium-term solution for me (Weight loss is the longer term solution for me, not saying this is the case for you)
In terms of the risks I don't have any expertise sorry.

Hi @Bluebird797 how where you diagnosed initially ?

No idea about lumbar puncture for therapeutic pain relief but had one for diagnostic purposes last year.
TBH it has always been one of my fears so was absolutely dreading it.
I had no symptoms afterwards but it wasn't as smooth as I'd imagined.
I had a consultant perform it and she explained before hand it's not an exact science and don't necessarily manage to 'hit the right spot' immediately, as it proved!!
I had to have a couple of local anaesthetic injections during the process and confess it wasn't the most pleasant sensation but certainly wasn't painful, more like an unpleasant sensation.
Just remember to breathe and it's really not too bad 💐

And the pain for 2 seconds wasn't like a screaming pain or anything, I just said ow.

@A8888 thanks for replying . I have been diagnosed with chronic migraine but I have symptoms of iih which has always been dismissed because I’m quite thin. Doctor doesn’t think I have it but I think because I’m worried about it and have the relevant symptoms it’s a leave no stone unturned exercise . Part of me wants it to know for certain if my concerns are correct but I’m also scared of making my headaches worse because they are AWFUL

I had the worst migraine I'd ever had, lasted about 2 weeks, and I ended up with double vision. I went to the opticians and they sent me straight to hospital because my optic nerves were swollen. Ended up under the care of a neurologist and the rest is history.
I think sometimes the thought of a lumbar puncture can be worse than actually having it.

Well compared to a proper migraine it’s about a 1 with migraine being a 10 and migraines can last days compared to what 10min.

You can feel needle going in hurts like a numbing injection for dentist does, it’s not not pleasant.Then it’s more pressure pain and constant ache at a reasonable level. I’m not denying some people may find it really awful but I really couldn’t see how it could be “ worse pain ever” either. If take that over chronic migraine any day of the week

Thanks @Akire really helpful . I feel it would take some beating my headaches

@Lkakpk I wouldn’t say they were painful, no. You get a little anaesthetic needle first which is a tiny little sharp (the typical, “you’ll just feel a scratch” pain) I never feel the actual lp needle go in, although there is sometimes a bit of pressure or a ‘crunch’ which is very strange, but not painful. Occasionally there has been a nerve twitch as well which is bizarre.
I don’t think they get a bad rap as such, and can definitely be necessary in lots of situations. The after headaches can be awful, but staying horizontal for an hour after the procedure, and as a pp has said caffeine can definitely reduce that risk. For some people draining of the fluid can be a relief so it’s definitely worth talking to your doctors about.
I’ve had a spinal block for an op before which felt really similar too (I’m presuming similar to an epidural type pain too?)

@Froppysue ive had an epidural and found that fine too !

[quote Froppysue]@Lkakpk I wouldn’t say they were painful, no. You get a little anaesthetic needle first which is a tiny little sharp (the typical, “you’ll just feel a scratch” pain) I never feel the actual lp needle go in, although there is sometimes a bit of pressure or a ‘crunch’ which is very strange, but not painful. Occasionally there has been a nerve twitch as well which is bizarre.
I don’t think they get a bad rap as such, and can definitely be necessary in lots of situations. The after headaches can be awful, but staying horizontal for an hour after the procedure, and as a pp has said caffeine can definitely reduce that risk. For some people draining of the fluid can be a relief so it’s definitely worth talking to your doctors about.
I’ve had a spinal block for an op before which felt really similar too (I’m presuming similar to an epidural type pain too?)[/quote]
Spinal anaesthetics are lumbar punctures (just instead of removing samples/taking pressure measurements we inject drugs). Epidurals are slightly different in that the needle (which is much bigger than a spinal needle) shouldn’t go in so far.

@Greybeardy in your experience why are lps so feared ? Are they known to be painful ? I never found epidural painful atall . I’m more worried about the after spinal headaches and I have found a lot of doctors seem to treat them as if they are painful and feared ?

@Lkakpk The incidence of a post dural puncture headache is somewhere between 1:250-1:500 so it’s not that common (an epidural has a 1:100 chance of causing the same sort of headache). The headache was commoner with a type of old fashioned needle - anaesthetists don’t use them anymore and I suspect the neurologists/physicians don’t either. If it does happen it sometimes settles with hydration, painkillers and rest but sometimes need a procedure called an epidural blood patch. The risk of any sort of nerve injury is between 1:1000- 1:100,000 and that includes the full range of transient, minor things to rare, permanent damage. As pp’s have mentioned above you can get tingly/electric shock feelings and it’s important to tell the person doing it if that happens. The risks of course all have to be balanced against the risk of not doing the test/potentially missing a diagnosis.

I guess one of the reasons people get anxious about an LP is that they don’t really know what it actually is (and terms like ‘spinal tap’ really don’t help!). If someone’s had an experience with stingy use of local that’d put you off another attempt. You can always say ‘stop’ if it’s painful.

@Greybeardy thats really helpful Thankyou !