Last reply 2 days ago
MS and sleep

Hi,
New to this site so hopeful of a good response. I have Relapsing Remitting MS although I don’t see too much of the Remitting part. I am a positive person day to day so posting anything remotely negative is hard for me but I realise I need some perspective now any any comments will be gratefully received. I have now had 3 treatments of Alemtuzeamab (prev lemtrada) over 4 years and since the first treatment I have suffered with Insomnia. Since the last treatment in November 2018 it has got beyond my control. I have been prescribed sleeping tablets, zopiclone and opioid tablets such as diazepam and tamazepam but nothing is working. My MS team won’t relate my insomnia to any treatment I have received and won’t relate it to just the fact I have MS as my brain lesions are not in the area that would affect sleep. I have taken part in a sleep study where I had electrodes glued to my head back in December 2018 but am still awaiting results. (No consultant available to read results) I would be grateful if anyone could offer me any type of help, support, explanations or advice as I am now near to the point of desperation. Thank you

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highlander
1 week ago

@nikki_jones
Hi and welcome to the club!
I’ve met a fellow insomniac!
Not good fun I know.
We’re all a friendly bunch here.
Feel free to ask anything you like we’ll find an answer so way or another.
Welcome again


rmdaniels
1 week ago

@nikki_jones
Hi lady & welcome! Have u had a thorough check of your hormones? I don’t have insomnia all the time, but I think my sleep issues are from menopause (started early due to hysterectomy). I refuse to take hormones, but bloodwork shows I really need them.


edmontonalberta
1 week ago

@nikki_jones

The question is why insomnia is a challenge for you. Seriously!

As a youngster, I was always awake by 6:00 a.m. – in my 20’s I never went to sleep before 2:00 a.m. Lived my whole life on a different sleep pattern than the rest of our planet. Now my MS requires sleep whenever; afternoon naps are normal.

Does your sleep pattern affect your enjoyment of life? If not, why does it matter? If it does, how can you adapt?


beckybarnes
1 week ago

I find having a routine helps. I lay in bed and read or watch youtube until I feel tired and then I go to sleep. On the odd night I have woken and struggled to fall asleep again, I will read or knit/crochet until its time to get up or I get tired and go back to sleep. Have you tried any of the Apps that have relaxing sounds? I tried a couple just to see what they were like. Listening to the sound of nature or a fire crackling was relaxing.


stumbler
3 days ago

@nikki_jones , here’s an article on sleep problems. It may have some suggestions that haven’t been mentioned :-

https://www.mstrust.org.uk/life-ms/wellbeing/sleep

However, I see more and more references to insomnia being a side-effect of Lemtrada. In view of this, you should be seeking your Consultant’s view on this and whether they should be contacting the drug manufacturer’s, Sanofi, about your particular case.


littlebopeep
2 days ago

@nikki_jones .

Have you tried or considered sleep restriction therapy / CBTi? I started a course about a month ago & the difference has been amazing.

The works by restricting the amount of time spent in bed to a very shortened window, based on how much sleep you were getting (in my case I was only allowed to be in bed for 5 hours), and if you are awake for more than 20 minutes whilst in bed you have to get up for 30 minutes. The idea is that you are so tired you have to sleep whilst in bed it reconditions you, over time you increase the time spent in bed and manage to maintain a better sleep cycle.

It was pretty brutal, but the relief of not spending 6 hours awake in bed, with all the worry, pain and numbness that brings was amazing… Plus I do now seem to be less tired & Im sleeping every night for long stretches.

I couldnt access it through my GP (although he did try bless him), so I paid for an online course (theinsomniaclinic.co.uk)… The platform itself was pretty good and Id recommend it, although kind of expensive dependent on your life set-up. There’s some free resources on that website and elsewhere though so maybe have a look?


millar
2 days ago

Hey guys, this is somehow my first post on the forum despite working for Shift for three years(!?) I’m sure you’ll be kind!

So we’re making a film this year hoping to capture the realities of life with MS and insomnia, the film will be told entirely through the voices of the community so we would love to hear your thoughts, your routines and what goes through your head when you’re exhausted but still cant go to sleep. If you would be interested in hearing a little more about the project drop me a line – [email protected] – or check out the page on the site – https://shift.ms/sleeplessness-project

M


vixen
2 days ago

Hi @nikki_jones, are you working at the moment? Insomnia is the pits, everything becomes exaggerated, mentally and physically during these times for sure. I keep a catalogue of my ultra-favourite TV programmes stockpiled; when I can’t sleep, I watch one of them which makes me feel I’ve used the time purposefully. Invariably, I get dozy watching too. Just a thought….

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