Xmas, LDN and stuff...

Hi gang… oh I am SO glad xmas is over! Even though I had an extremely quiet xmas I still found it exhausting. I think really it’s the pre-xmas stuff that’s so tiring. Had a couple of events here where I live and last Sunday had lunch with family and… well… by the time the actual day was here all I felt like doing was lying in bed. I had booked to go for lunch out with 2 others, one of which cancelled as she wasn’t well, so I had to go and it was ok… but such an effort. Apart from all that, I stopped taking LDN before xmas. I just felt terrible on it and also very depressed… which is strange as it’s used by some people to help depression. Anyway the day after I stopped I felt much better… like I’d been sitting in a dark room and someone had just turned on the light. And even though I’ve been exhausted over xmas, I have not been depressed. I know… I know… I should have tried for longer. But I could only tolerate 0.5 ml without it giving me major buzzing and itching all over… and the depression was pretty awful and the tinnitus was through the roof. Please don’t let this put anyone else off trying it. It does appear to help most people with MS. Oonagh I’d be very interested to know how you’re getting on with it? I’m in two minds as to whether to try again… but I can not deal with that level of depression. Anyway gang, did you survive xmas? Who had a good time and who, like me, is just pleased to have the whole thing over for another year? And your thoughts on LDN please. Love to all and hoping you DID have a good one, Pat xxx

Hi Pat, Such a shame LDN didn’t suit you…but then MS is not a one size fits all disease, is it? Good as it is for some, I most certainly would not have continued had it caused depression for me. Christmas was good but oh so exhausting…can’t wait to get back to normal! Happy new year to all, Love Nina xx

I have honestly never heard of ldn causing depression before, but you know your body best and obviously did the right thing in stopping. All the proof you need is that you feel better, so nothing to fuss about and at least you tried the stuff.

If you do decide to have another bash, then start with .25ml every other day and see if that helps toleration. Not that I am suggesting you do though, but you did sort of ask.

I hope the New Year is less exhausting.

Pat at least you can say “I tried it”. Whether you try it again or not is up to you, my philosophy is to try stuff, if it works, good keep at it, if I don’t like it I’m a big girl now and I don’t have to continue with it. It’s true, we all have the same illness but we’re all affected differently and don’t all respond to treatment the same way.

Depression is an awful symptom to cope with. People who’ve never experienced it often have the “just pick yourself up, stop being pathetic and get on with it” attitude. I know because that’s what I was told to do, and that was extremely difficult to cope with, but having suffered with it for years I can understand your reluctance to go through it again. It can be very isolating, and very difficult to notice in yourself until you’re in a really dark place where it’s even more difficult to find help and treatment. I’m pleased for you being able to see what was happening and stop the LDN before it got too bad.

I hope things pick up for you and wish you and everyone else on the site all the best of luck for 2014.

Cath xx xx

Thank you for lovely responses. I’m still not sure what to do but I’m not burning any bridges. Dicksons have said they’ll keep prescriptions on hold and I’ll email e-med and ask them to do the same… and I’m keeping the bottle in the fridge. Who knows why these thing affect us all differently… or what else might be going on. Hope everyone has a good Sunday. Frosty in London. Which reminds me, I’ve got a bird feeder on my window which is usually used by great tits. When I got up this morning the feeder was empty and there was a little robin redbreast sitting looking at me. He flew off as I filled it but was back a few minutes later. Sweet. Pat xxx

Hi Pat,

I found xmas very exhausting too, even though i didnt do much,and i am always glad when its over,i hate hate this time too,the inbetween xmas and new year its soooooooooo depressing,

i always feel better a few weeks into january,i dont like xmas very much at all,havent done for years now,i am a spring/summer type person,i have just been in our shed and seen the daffodils poking through,that makes me feel brighter lol.

as for trying the LDN, you gave it a go,and it didnt agree with you,i dont know you,but i could tell from your posts or lack of them that it was making you feel depressed,so why put yourself through feeling worse,i know i wouldnt.

hope you feel much better,these next few weeks, im sure you will now you have stopped it.

Wishing you all the very best for 2014.

J x


I too tried LDN, and like you it really made me feel rubbish. Lasted about 3 months then gave up.

Take care


Aw Pat, I type this from my bed, fully clothed but curled up here as best place to be, yes Christmas is knackering! Sorry to hear the LDN hasn’t suited you. It’s rotten enough that there is so little available to us that you can’t help but hope for some improvement.

We’ve had a strange one this year, overall good but not stress free really.

We had an unexpected extra houseguest due to the awful weather… Hannah’s poor boyfriend got a train from Norwich to London but no trains running out of London so he couldn’t get home to Taunton :frowning: We don’t mind him staying at all but I’m sure you guys know how exhausting we find any breaks from the norm, gutted for the poor boy that he never go to see his family this Christmas!

On Boxing day everyone came to us, my husband was an absolute star! And M&S helped with a 3 bird roast and all the trimmings (even the stuffing) was gluten free :slight_smile: sadly, quite a lot of people had to leave a bit early, my poor sister had to go to a doctor’s appointment and…

WARNING - I’m gonna have a moan now!

My poor grandad had a fall in the morning tho so my Auntie P (she doesn’t drive and her poor husband has been having nasty invasive hospital treatment that’s ongoing) was calling to keep us in the loop. Grandad was low priority at the hospital even tho he’s in his 90’s and he was waiting literally hours to have some stitches.

Naturally (can you hear my sarcasm?!), my poor Mum and step-dad had to drop 3 children at different addresses before picking him up from the hospital and settling him at his home, I don’t think she was actually home til about 10pm judging by the text messages :frowning: It would not bother me so much if my Mum didn’t have one sister, who drives and has NO commitments AND is always the one to stick her oar in about what should be done etc.

sighs Thank you for letting me get THAT off my chest!

Anyway, we made it through with no major disasters :wink: 2 more days at work then our contract finishes bad financially but hoping for a quiet couple of weeks (new contracts don’t usually start at the beginning of Jan) so hope to pick something up fairly soon

Hope everyone else had a good Crimbo :slight_smile:

Sonia xxx

I think, honestly I doI think LDN is ‘pants’. Say hi to the wee robin from meM

Sorry it didn’t work for you Pat. As you know, me too! It doesn’t suit everyone and it is such a disappointment isn’t it? As some people swear by it! At least you gave it a go and you know now. It made my MS worse too! I haven’t felt too well either as I have been suffering from depression and my GP put me on Citalopram - the side effects have made me so ill and unable to sleep. My GP has told me to come off it now and I’m going to try another anti-d! Was hoping I wouldn’t get depression but I was doing so well after diagnosis, almost too well. I think it caught up with me! Anyway, hopefully things’ll be better coming off that nasty drug! I hope things look up for you soon Pat. I enjoyed Christmas with my family and have got my son’s ninth birthday on Jan 1st which I’m looking forward to. Keep well all and take care, Teresa xx

Oh Teresa I am sorry to hear you’ve been depressed too… It’s just awful isn’t it. I usually manage to enjoy the small stuff, but depression strips away all of that. It’s very hard. I think it’s very important to remember that we have a double whammy with depression… living with MS can make us depressed but the MS lesions can actually affect our moods and cause depression. Anyway hon I hope you are feeling much better soon and that you find an anti-d that works for you. Sometimes I find that I fight too hard against depression. As soon as I admit to myself that I’m depressed I start feeling a bit better. Thinking of you Teresa, Pat xxx

Thanks my lovely. I agree with you about fighting too hard against depression - it has helped to get it out in the open and talk to the doctor, who was very kind to me which helped enormously. I had PND with 3 of my boys and it is just like that again - hateful. The inability to sleep is my worst thing and the fact that any task is an uphill struggle! Fingers crossed that we both start to feel better soon, as you say it strips away the pleasure in the small stuff which is generally what keeps you going! Thinking of you too, Teresa xx

Hi Pat

I am so glad Christmas is over, sorry if that makes me sound a misery, its just too much hassle.

I am sorry that ldn hasnt worked for you, but at least you know you gave it your best shot. I suppose it is a bit like ms, effects us all in slightly different ways.

I am sorry both you and Teresa are feeling depressed, but admitting it I find is the first step to improvement, so I hope for both of you that this is the case.

Hope 2014 is good for everyone, take care.

Pam x

Thanks Pam… and all the best for your 2014… Pat xxx

Hi Theresa , I really really do hope that you will soon be feeling so much better…it’s so hard to talk about isn’t it…but I guess we have all been there at some stage of our illness. As Pat says we have to find our joys in different ways to other folk and it does become so hard when you feel so depressed. It’s bad enough for someone without other physical problems but add MS to the mix and it becomes like an insurmountable trauma. Hope you find new medication that suits you…have you tried Prozac …fluoxetine? that’s what I take…I’ve taken it now for nearly twenty years and I’m lucky in that I don’t have any side effects from it. Don’t forget we are all here to help if we can…wish there was more we could do! Get well soon Teresa and I wish you a very happy new year. Love Nina xxx

Thanks for your kind words Nina. It is hard to talk about but it does help when you do! I have been prescribed Escitalopram and will try it but if it gives me the same side effects my GP told me to come off it straightaway. I’m not going to be stoic and try to put up with it this time. I am seeing my GP next Wednesday anyway, so hopefully if that one doesn’t work, I can try another. I shall keep you all posted! Happy New Year too! Teresa xx

Sorry to hear you’re struggling Theresa. You’ve been such a help to me over the past months and if there’s any way I can be of help to you I hope you know I’ll be here for you. As the others have said, depression is common, I’m one of the fortunate ones who Citalopram works for but still have episodes where it’s tough managing.

But you only have to ask if there’s any way I can help. Take care.

Cath xx

Thanks Cath - it’s kind of you. Have started a new med yesterday Escitalopram and it seems OK so far, just made me a bit fuzzy-headed and groggy! Hoping it’ll work. Sorry I didn’t see your message until now! I will be glad to feel “normal” again. Let’s hope that doesn’t take too long! Teresa xx

Hope this one works for you Teresa …is it the same as most others …takes 10/15 days to take effect? Don’t give up if it doesn’t help …there’s bound to be something that suits you. Best wishes, Nina x

Thanks Nina. I seem to be tolerating it well. Now I seem to have another UTI. I think it’s probably because I’m really run down now! I’m also suffering from excruciating heartburn which I think is caused by my Simvastatin which is meant to help delay MS progression. I have been given Lansoprazole but it doesn’t seem to be working. I am really in a state and need something to get better! Teresa xx