Forum

Lumbar puncture - caffeine

Hi, I’m looking for some advice regarding lumbar puncture.

I am due to have this on Wednesday and starting to panic about the headache from hell. I am a migraine sufferer and on beta blockers for prevention so hoping this may help although from the understanding of the cause of post LP headaches I doubt it will.

What I am wondering is do I start to drink coke (I drink plenty coffee at work) tomorrow in the run up to it or is it once it’s done?

I requested Wednesday only off from work as hoping I will be ok for the next day although I will need to see how I feel.

Lynette

i drank non-diet coke during and after.

take a bendy straw to avoid a soaking!

i’d have preferred a coffee but difficult to keep close at hand.

i didn’t get a headache!

I had mine 20 years ago. There were no instructions about caffeine, I think they told me to stay laying down after. I didn’t get a headache.

Just take fat coke and a bendy straw, make sure you stay laying down for as long as possible, and touch wood, you will be fine.

Sue

What can be used instead of full fat coke as obviously people with diabetes can’t touch the stuff?

Thank you fou for getting back to me and it’s also reassuring to hear about no headache.

I think I have researched the forums wrong as a lot of lumbar puncture I looked at was about the headache from hell.

Been sipping coke through today and will go for it tomorrow. I’m more of a Pepsi drinker and find coke too syrup like and sickly but will do anything to try and prevent.

Never even thought about a bendy straw which makes sense so thank you.

My leg I had the trapped nerve feeling relapse with a few months ago has been horrible today. Tingly and that horrible tight feeling you feel before a cramp but it’s been that way all day so assuming it’s stress related? Still quite new to sensations and how this works on my body.

Lynette

Doesn’t Pepsi have the same caffeine content? Surely that’s the important thing, not the brand?

Does Diet Coke have the same or similar caffeine content? Otherwise, coffee. It’s a bit difficult to drink hot coffee when laying down but if you can swallow it semi (or completely) cold, then that would do the same job. Just make it strong coffee. That way you don’t have to try to get down so much in terms of volume.

Sue

1 Like

maybe red bull would do the job because that has a lot of caffeine.

I did think that about Pepsi but just went with coke as that’s what everyone talks about and want to make sure I get it right.

Carol, I never even thought about red bull but makes sense so will get some for after procedure, thank you.

What I do wonder is why caffeine is a big thing with the fluid as my leaflet does say if you get a headache that lasts they do an intravenous caffeine which usually gets rid of headache straight away?

Thinking of you today and hope all went well.

Hope the caffeine works.

Jen x

Hi Jen

Thank you for your message.

Drank coke before and red bull after and no headache : ) I do have pain to the side of spine though and backache. When he had needle in I could feel a sensation I’ve never felt before about an inch to side of spine that lingered. Once it was done the only way I can describe it is like a spasm when I move so going to rest today.

Just so glad I didn’t get the headache : )

Lynette

Haven’t had any caffeine for decades. Didn’t have any before or after my LP last year, just take it easy afterwards for a couple of days.

Hi Teal

Off work today as back pretty sore and achy but will be back tomorrow. I work in an office so sit for most of the day anyway.

Have another brain MRI in a couple of weeks and they are doing spine too.

Received in post today a copy of the letter my neurologist sent to my doctors confirming diagnosis, history, what had been discussed and he wrote about the potential benefits discussed of first line treatments including the Lemtrada. He had said I had been referred to ms nurse but still not heard anything but know they can be busy but my doctor had said to contact them and they can get her if I haven’t heard should I have a relapse.

Lynette

Hi Lynette was just wondering what your waiting time was to get your LP. I was with the consultant 4 weeks ago. I hadn’t heard anything so contacted the hospital who also had no details of my referral so I contacted the neurons secretary who told me it would be 6 mths? Doesn’t sound right to me

Hi JT

I had my appt when diagnosed on 28th April and received a letter last week for yesterday’s lumbar puncture appt so 4 weeks between them.

The date on the letter my doctors received from my neurologist however was 25th May so only last week when the diagnosis was sent to my doctors although know there can be time lapses.

But would have thought your lumbar puncture request would have been noted as it’s done by hospital anyway where the neurologists are based. Mine said he was sending lp and MRI requests that day and had both letters last week with appt slots.

Not sure if waiting times are different throughout UK? I’m in Scotland. Do you think maybe his secretary was talking about review appt was in 6 months?

Maybe try contact your doctor and ask? Hope you get some answers.

Lynette

Thanx so much for coming back. Going to docs on Tues, symptoms have flared up really badly past few days and really struggling, Neuro put me on gabapentin but it doesn’t seem to be working anymore

I’m really sorry to hear that JT, hope you do get some answers.

I think there is so much going on when first diagnosed that we don’t know where, who or what but I really have found everyone on this site so helpful and supportive with stories as each one of us has our own to tell.

I still feel a bit in the air which is why I had a telephone appt with my doctor yesterday morning as I hadn’t heard from ms nurse and he was great saying they too are there for me. He also prescribed me different tablets as on and off since 1st dizzy, facial droop relapse nearly 2 years ago I get dizzy spells with sensation my eyes are being drawn. The anti dizzy tablets (prochlorperazine) I had don’t help at all when I have episodes so he said there’s no harm trying to find one that will work but has said none may help so fingers crossed something does. To take 3 a day only when I have the symptoms.

Let your doctor know you feel lost as they too can refer or try get answers. Have you been referred to ms nurse?

Lynette

OMG Jt 6 months is a really long time to wait for a lp. I am waiting for an appointment to have one too. I am going to contact my neurologist’s secretary tomorrow to find out when mine will be.

Hi Lynette,

Glad things went ok and that you have the support of your Dr. hope MS nurse gets in touch soon.

My top tip is to keep a journal of all your symptoms, how long they last and any drugs you are put on. Also all your appointments and who with and notes about the meeting.

It’s easy to forget. Info is invaluable if you want to apply for a blue badge, PIP etc.

Stay well.

Jen x