Hi Charl, you know I had my first LP waaaay back in 1999 and was told to lie perfectly still for a sold 4 horus afterwards. I did that and had no headaches.
My last LP was last year and I was told I only needed to lie still for an hour…I was very sceptical about this, but topped up my caffeine levels beforehand as the doc advised.
I did that and went home on quite a long uncomfortable journey. My back was sore as hell, but no headache.
So sorry that you are having this experience on holiday! That must be really horrible for you Charl!
I wasn’t advised to lie flat and was told to get up (!) straightaway then made to sit upright in a chair. There are different packs/spinal needles at different trusts and my hospital used a less traumatic one than they used to. I did drink a can of full fat coke afterwards but in all honesty my headache didn’t start for 2 days then i had a week of on/off headaches which came on suddenly and went suddenly. Worse for me was the crippling band of lower back pain (which seems to be an ever present feature of my MS anyway).
Hope you start to feel better really soon. My headaches (though incomparable to yours by the sound of it) went away suddenly too. x
Thank you both, yes I think I have just been really unlucky with my reaction to it. I laid down for a good hour, probably closer to two afterwards. The only thing I can think is that they told me not to drink anything that morning after 6am. Due to various delays the LP then wasn’t done until about 9:30/10 and it seemed to take forever for me to get back to my room and offered a drink afterwards, think it was about 12:30. It was that day when it was record high temps and I was so dehydrated in a stuffy room and really don’t think that helped get things off to a good start recovery-wise.
Thankfully they seem to be easing a bit - although I’m scared to say that in case I jinx it! Activity seems to set it off, we went for a short bike ride this afternoon and that brought one on after an otherwise ok morning. I’m really hoping they go soon.
Fair play for having two Bouds! Was that to confirm/update diagnosis in your case or did you need a second one for another reason? I don’t think I could face a second one. The recovery has caused me more pain than when I had my c-section!
That’s disgraceful! But that’s why you don’t feel well?! I work in anaesthetics and they’ve asked you to be nil by mouth for hours beforehand then not so much as got you a drink of water immediately afterwards. That’s really not good practice at ALL Charlotte. And sedation isn’t routine for this procedure so the fasted state from 6 was hardly necessary.
I’d actually raise this at your appointment as an issue. You were kept dehydrated for 6.5 hours. This undoubtedly has contributed to how you feel. I’ve never even come across that. Even patients of ours who are fasted for way more intrusive procedures are given a drink of water the second they need one post-surgery- it’s common sense to be honest.
Oh wow I’d just assumed that’s what they got everyone to do! How strange they were so strict about it - I was actually only even allowed water at 6 because I take a regular medication each morning and they said fine have a drink with that but then absolutely nothing else, not even chewing gum.
Part of the problem was actually being a private patient in an nhs hospital. No one really wanted to take charge of me it felt like. The NHS nurse called the private one twice to come and get me afterwards, then ended up wheeling me back to the private bit herself. I think the private ones then couldn’t really understand why I was back as by that point it had already been nearly two hours. It was all a bit of a disorganised shambles to be honest. Don’t even get me started on how difficult it was just to get them to coordinate with each other to arrange the appointment in the first place! I drank my entire jug of water they eventually brought me in about five minutes! I will definitely mention it to the Neuro at my next appointment although not even sure if he’s the relevant person to tell. Feeling quite annoyed now! Thought I’d just randomly been unlucky but seems as though some of this awful recovery could’ve potentially been simply avoided!
The procedure was delayed in the first place because of their lack of organisation too. I was originally told go straight to the NHS hospital in the morning, then they called and said no go to the private one as you need to check in there then they’ll take you across. So that’s what I did and I just sat in my room there from 7:15-9:30 and then when they took me across the NHS ones said they’d been calling my name out all morning and had been waiting for me since 8:30 and had expected me to be going straight there. Apparently they called the private hospital to see if I was there but they gave them the wrong name, my middle name, so the private hospital said I wasn’t! I kid you not. I don’t like to complain but honestly, my 5 year old could’ve organised it better!
Wow you’ve had a rough time. Think you only ever need 1 LP so that’s good news for you.
Seeing your post about telling people, I did it a little differently.
Was diagnosed with Benign MS in 1998 after having symptoms since 1989. No visible symptoms so only told my partner and my parents and brother. Didn’t want to by pitied, or described as Jen, with MS or constantly being asked questions about it.
Roll on to 2010 changed to SPMS as my walking was starting to be effected so told my daughters who were 6 and 7.
Then just sent a blanket email out to all my friends. Meant that they had time to think before replying or when they saw me next. Just like catwoman I got lots of hugs and words of support.
If I had my time again I would probably just tell everyone straight away to show people that a diagnosis of MS isn’t s car crash just a slow slide!!
Look after yourself and let us know how you get on.
It’s good to hear that you were able to manage so well for so long. How is your walking now if you don’t mind me asking? One of the biggest worries I have is what to say to my young daughter (5). I expect she’ll take it in her stride and at the end of the day she’ll only know as much about it as I choose to tell her. I’m probably over thinking things but I worry more about her saying something to a teacher/friends mum etc and them reacting in an ‘oh my gosh that’s awful’ way and scaring her. How did your daughters respond? I also have a son who is one and it makes me sad to think he’ll never know mummy without illness if you know what I mean. So I’m undecided about whether I’d tell them or not. So far my daughter just knows my eyes keep hurting and the doctors are trying to find out why…
That’s why I told my daughters and everyone else at the same time. I had a book from my MS nurse that explains MS for children. Looking on this site they don’t do the book in hard copy but you can download.
I taught my daughters to be very independent from a very early age not knowing how my MS would progress. Setting the table, loading the dishwasher, putting dirty laundry in the basket, changing sheets, putting shopping away etc. People used to comment on how helpful they were, but it was my way of getting them to help me and they enjoyed it… Life skills My walking has deteriorated now but they’ve just accepted it.
Thanks so much Jen. I’ve had a look at both links. I think the story is lovely. It’s probably something I’ll keep in mind for later on as at the moment I’m not visibly affected so she wouldn’t have a lot of the experiences it talks about such as friends commenting on why I couldn’t do things etc. I’ll definitely use it if things progress to that point though.
Great tips about encouraging independence from an early age. I read somewhere that someone with older children used getting them to do a few chores as a way of them earning their pocket money. Good idea anyway to be honest! But I’ll definitely start thinking about how I can encourage them to do a bit more for themselves. As it stands like a lot of mums I can be a bit like the family servant!
I was diagnosed in December at 68. As my speech is affected I decided to tell people fairly soon after diagnosis, because it made me feel self conscious. Most people were very supportive the exception being my doctor sister who just didn’t know what to say. I try to keep active, I’m going back to aquafit next week … at least you can’t hit the ground!
Hey, much the same symptom-wise still just hanging in there for the appointment next week. I’ll definitely update on here when I’ve had it. Just been doing a bit of research into the DMDs so that if the conversation goes that way I’ll know what he’s talking about!
Told my three besties via a zoom chat and felt really relieved afterwards. They were brilliant about it. It made me realise that for now at least those close to me and of course work are all I’d need/want to know. Felt very lucky to have them respond how they have but also appreciate it’s very early days.
will see what the appointment brings…