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Lumbar puncture and scared stiff!!

New diagnosis and before diagnosis
#1

Hi!

Am i the only one that is so ridiculously anxious about having this procedure?! I literally feel sick when I think about it and have even been dreaming about it!!

Youd think after having 3 children something like this would be a breeze but I’m absolutely dreading it! I had a spinal when having my first child and had a huge electric shock and I don’t think that memory helps matters! Plus when I went to the gp recently (over something else) and mentioned my anxiety about it and he said “I’ll give you some diazepam as it’s not a pleasant procedure at all”…thanks Doc :frowning:

Any words of encouragement would be great! I hope you’re all well as can be!

Tanya

#2

Lots & lots of us have had it Tanya & we are still here!!! Don’t get yourself all wound up, believe me you will make the whole experience a whole lot worse. It’s not a particularly nice for any investigation, but remember, it is necessary in order to help get answers. If it’s any consolation, I had to have a colonoscopy recently, oh dear but I’m here to tell the tale! Try not to get too stressed, easier said than done I know, but everyone’s experience of treatment is very different, I hope to hear yours wasn’t too bad & better than you are expecting, good luck, let us know how it goes Tracey x

#3

Hi,

Quite a few people have asked about Lumber punctures recently. Have a look through some of the thread titles.

Lie flat for as long as possible afterwards otherwise you might get a LP headache. Caffeine is supposed to help so maybe have some before or just afterwards.

Take the diazepam,it will take the edge off your anxiety.

Good luck, you’ll be fine,it’ll be over before you know it.

Jen xx

#4

Hi, the fear I truly understand. But, is it about the test or … The possible results ? Having an epidural during contractions is really hard but, last month I had a LP & it really was nothing. Blood tests are more uncomfortable . Good luck. & hugs

#5

I had my first lumbar puncture when I had my first signs of MS at the age of 20. It was done in hospital then with an overnight stay - you weren’t allowed to get up for 24 hours.

The lady in the bed next to me asked what I was having done - I told her it was a LP and she did the “drawing in of breath through her teeth” thing and said “oooooh that’s a nasty thing to have done love”. Up til then I wasn’t too worried but I spent the next hour or two absolutely petrified because of her.

Time for lumbar puncture came and whilst it was a little unpleasant, there really was nothing to it at all. I do wish people would thing twice before filling people with dread!

For the record I had my second LP last year - when I was finally diagnosed with MS - i was 56 then!. That too was a bit of an inconvenience but nothing more. Was advised to lie down for a couple of hours afterwards, but then I went on my merry way. The following morning I got the headache from hell…lasted about a week. I would advise to lie down for as long as is possible for you after the procedure. If that’s not possible then the ‘full fat’ coke and/or strong coffee should help.

Don’t worry - it’s nowhere near as bad as some people paint it!

Juls

#6

Hi Tanya

I am due to have a lumbar puncture next Wednesday and totally relate to your post. The closer it’s getting the more nerves seem to be emerging.

I have had 2 children and had an epidural with my first and can’t say it affected me at all when they done it although that may have been because the contractions were ten fold haha

When are you getting yours? My letter says I get admitted on ward and that procedure takes about an hour.

I did get a detailed patient information leaflet on it and more concerned about headache that seems common. I got the day off work but didn’t think to say about after and so hope I am ok for work on Thursday.

Lynette

#7

The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.

It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.

These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.

If the headache lasts more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a night’s sleep; this is rare.

Good luck.

George

#8

Thank you for the advice George.

I will be stopping at shop on way home from work tomorrow to stock up on coke. I am a coffee drinker too so will make sure I keep up my numerous cups of coffee : )

I am having to get my mum to take me as my letter says I’m not allowed to drive for the rest of the day?

Also a bit confused as thought it would be an appointment seeing neurologist in office and getting it done but says I will be admitted to ward but procedure only takes an hour?

My information leaflet gave a lot of information and had said about the headache too but just said if I get a post-LP headache to lie down as much as possible and drink plenty of fluid although no mention of caffeine based. Only that if it persists or is extreme it can be treated with intravenous caffeine infusion. You would have thought they would recommend caffeine from the offset.

I am going to wait and see how I am Thursday for work as really hoping I will be ok but know it may not work that way.

This site and everyone here have been a breath of fresh air as I’m still learning and although textbook reading is good, it doesn’t cover the personal side of things and tips.

Lynette

#9

Hi :slight_smile: i can relate, i got myself in a right tizzy over having my lp, i have to say although not the best way to spend a morning it really was ok, no pain and over in no time. I drank loads before i went and loads of caffeine dirinks after, never got a headache at all just a bit tender on my back for a day or two. The thought of it is much worse than it actually is, Good luck x

#10

Sounds like you are going to have your LP done on the (neuro) day ward. I had mine done on one as well. Don’t worry - it’s nothing like being admitted overnight to an in patient ward. No jim-jams required! There will be other patients having procedures there as well with nurses and doctors to do the procedure and check up on you afterwards before you go home. I go to a Neuro day ward every 28 days for an infusion of Tysabri and it is quite busy and sociable.

#11

Thank you all for your replies!! I’m sorry I didn’t reply earlier but it’s because I didn’t get any notifications!!

but you were all right, it was absolutely fine! The blood test was the worst part. I cried so much before hand which I felt silly about but it really was completely pain free.

Thanks again and hope you’re all well!!

1 Like
#12

I’m so sorry I didn’t reply. I didn’t get any notifications!! How did you get on?? All well I hope

#13

Hi Tanya

Yeah it went fine. A little uncomfortable as he hit a nerve but I think I made myself suffer more in the run up to it with stress and nerves. No headache which was my biggest fear.

Had another brain MRI and also spine this morning, appt last week with ms nurse and will have them weekly for the next month . Next weeks appt is to discuss and decide what medication.

I hope you are well