Dreaded Insomnia.....

[Jonas1272]

Hi all, my first post on here so bear with me if already discussed or has a thread, I suffer with insomnia and its really starting to get to me, my living situation wasnt great up until May so i kind of accepted it and managed best i could, however i have now moved to a new flat and settling in which has been amazing, the insomnia settled briefly but has returned with a vengeance !! I have cleared my bedroom of all electronics, tried all the methods of getting myself ready to sleep etc even to the point where im so exhausted and tired im virtually falling asleep. The second i go to bed though and settle down BOOM i cannot drift off :( I end up getting up trying to do something and then feel exhausted again so return to bed for the same thing to happen again i end up finally falling asleep at stupid o clock ( 6-7am) then sleeping till the afternoon. 

I know if i can break this cycle with a couple of nights good sleep at normal hours i wll be ok, so my question is has anyone tried any ' over the counter ' pills remedies and if so which ones work best ?? Im looking at Vitafusion Sleep well at the mo as i have tried Nytol etc and dont really work ?? 

If anyone has any advice etc i would be really grateful and on a side note im seeing my GP on friday for more advice, i dont really want prescription pills as the addiction side of things is not something i want to worry about. 

Thanks all in advance

Jay

[Marina]

Hi Jay and welcome! Please don't worry if anyone's already asked the same question, no two people with MS have identical symptoms or situations. We're always willing to try and help with any questions or concerns.

 

Oh, I can sympathise with your insomnia! Like you, I can feel as if I'd fall asleep at any given moment and feel as if I can't keep my eyes open, but am then wide awake the minute I get into bed...

 

I've found that Sominex can help. It's actually an antihistamine called Promethazine Hydrochloride, repackaged as a "night time sleep aid". You can get it in Boots or any chemist, over the counter rather than on the shelves. The only possible drawback is that it might make you feel still tired the next day. I often break a tablet in half to lessen that effect. If half a tablet doesn't work, I then take the other half and sod the next day!

 

I also take CBD oil. It doesn't do much for my symptoms (although a lot of MSers find it helps) but I do find it helps me stop "ruminating" when trying to sleep. The problem with CBD oil is finding one with the right strength and which suits you, as it can be a matter of trying various ones to find one that works best for you.

 

If you find something else that works, I'm sure many of us, myself included, would be interested to hear about it. Please let us know how you get on with your GP about it?

[Stevietoo]

Not sure if I can help, at present, I've not been diagnosed with MS, so not sure what's going on (but it seems the usual - vision problems, numbness, pins and needles, bouts of cramp, memory and coordination shot etc). Anyway, for what its worth I WAS having similar problems and maybe have an answer. I usually wake up at somewhere around 2.30/3.30 am and can't get back to sleep - at least, that was the pattern for a year or two. For the last few weeks I have been adding a slice or so of fresh turmeric root (only about 2cm, cut into small chunks and left in the teapot) to my redbush tea and that seems to coincide with me sleeping much better. AND it is known to be an anti-inflammatory (I was putting it in because I have arthritis) . Interesting to find out that broken sleep is another MS-thing - but I can't swear that the turmeric is really doing the trick as everything is so damn inconsistent.

 

There is a PS,  I also now have a flare-up of issues but that seems more likely linked with dehydration because of the hot weather and a higher than usual salt intake.

[Nick]

Hi Jay, 

Welcome to the forum.

I don't know if I can be much help but do understand the problem.  I've found with MS you do need to keep exercising. This might seem unconnected to having sleep problems, however I find it useful to reduce stress. This has in the past helped me with difficulty in getting to sleep.  

I was also very reluctant to use drugs but find them useful in helping me. The main point being to seek proper advice from the MS Nurse if you have one. I have never had much success withe GP's as they are often simply too overworked and may not nessecerily have the specialised knowledge. Really with MS you need to become your own specialist, so you do have to try things. Often simple things like what you eat and drink and when you do it, can help. A matter of changing things to see what happens. 

Its a great shock being diagnosed and it takes a long time to adjust, when you have a million things whizzing about in your head, it may seem impossible to break the cycle, but it can be done! 

 

Nick

[Jonas1272]

Thanks for the replies guys :) Im going to speak to GP on friday and get some advice as i really need to break this cycle, so many things im adjusting too and learning to manage but sleep is my main issue as i just want to try and have a relatively normal routine

[WobblyGreg]

Here I am at 3.13 am reading about insomnia , yep know how it feels.

I just accept it I'll drift off again soon maybe have nap late morning or afternoon often in evening before soaps . I read ms folk can sleep 16 hours a day 😨

[Minky Madam]

I have heard that melatonin supplements can be used to kickstart/correct circadian rhythms ie because of jet lag, working shifts etc and it was prescribed for my son with autism for a few months when he was younger, to encourage his body clock into a proper sleep cycle. I think it can be bought online but obviously am not recommending it for you specifically, you'd need to do your own research and see if you're happy with it, and perhaps mention to your MS Nurse??

[popsie]

Insomnia is a trial - didn't Lady Macbeth famously say "Sleep knits up the raveled sleeve of care" no wonder we are more than a little distrait.  Baclofen makes my insomnia worse, ditto melatonin and diazepan  ?! But Sativex helps.  I saw on this forum a lot of posts saying marijuana is very helpful.  I think they were talking of medical marijuana which you can buy in the UK  ?  Sleep well.

[popsie]

I have found something weird that helps when I have spasms that wake me.  Normally I just roll backwards and forwards which eases the spasm but does make it impossible to sleep and I can roll for hours.  Then I found if i eat something I am able to sleep for an hour or so.  It seems my body is unable to multitask so spasms stop while it is digesting.  I eat a small to medium carrot.  Only works from 1am till 8am.  Perhaps I was a rabbit in a past life though Peter Rabbit found lettuce soporific maybe he would have found carrots even better

[Shirl]

Hi Jay

 

I recently read a snippet that grabbed my attention. It advised not trying to sleep. Just do all the things you like leading up to your preferred bedtime (some like early, others like late. Just note my time of posting). Then get as comfortable in bed as though about to sleep. Assume sleep will happen. Then stop trying. Don't beat yourself up about it. Don't think too hard, just lull.

 

I love to read and don't switch the lamp off until I am ready. I don't worry about times even though my daily schedule surrounds care calls. I know I will sleep at some point and I've stopped counting the hours I achieve. My early morning tablets alarm sounds at 6 and I love being woken by it and then having the luxury of going back to sleep or reading again.

 

I really hope a change of emphasis might help. If I have missed the point with regard your situation, I apologise.

 

My hubby sleeps through all of this but he is only married to MS.

[PaulX]

On 10/09/2018 at 03:15, WobblyGreg said:

Here I am at 3.13 am reading about insomnia , yep know how it feels.

 

Reading this at 2am after 4 hours in bed just looking at the ceiling waiting for sleep to come by.

[popsie]

Sorry to hear that Paul, did you know a lot of supplements and foods can affect sleep.  You can google side effects but you must be sure to read ALL side effects including those marked as seldom known.  I slept even less when I took Melatonin !??

[Happymama]

I find that without pre-midnight sleep I go down very rapidly.  I've woken the last three nights at three AM, but that's after around four and a half hours, clearly not enough. I have a sleep app on my iPhone  that makes white noise and that does get me off a lot, but rarely works half way through the night.  my app also shows a very strong correlation between the phases of the moon and my sleep - I sleep better after a full moon, not before.  Go figure. Let me know.  No other factor has such a strong effect.  Not even booze which is supposed to destroy your REM sleep.  

 

I do on average get 6 hours, over time.  And do 11,000 steps a day on average, 17,000 the highest several times.  Of course, this doesn't happen when my right shin checks out.

 

 

 

 

[PaulX]

8 hours ago, popsie said:

Sorry to hear that Paul, did you know a lot of supplements and foods can affect sleep.  You can google side effects but you must be sure to read ALL side effects including those marked as seldom known.  I slept even less when I took Melatonin !??

I am obsessive about reading the data sheets when I take anything new.

I will also search for peoples experiences and side effects.

I will then repeat the search to find out how it interacts with MS and what peoples experiences.

 

I have actually withdrawn from a trial because after reading the data sheets of the possible drugs I might be asked to take, I didn't like what they might do. Namely side effects.

Edited 20 Sep 2018, 11:32 am by PaulX

[popsie]

Too right Paul you have to be your own advocate and do your own due diligence.  I have been told countless times that the side effect I am experiencing is NOT listed meanwhile there it is under "little known" or "seldom experienced".  At this stage I tend to bring out the anaphylaxis card which at least forces them to listen.

 

 

 

[popsie]

After 20 years of clock watching I am finally sleeping better, (still wake 2 or 3 times to go to loo but now can go back to sleep) and have a combination of Sativex and carrots to thank.  It seems we all have to persevere until we find what weird combination works exclusively for you.  My Kinesiologist/Natropath says that the liver is detoxing for 4 hrs at that time, so if you want to experiment you could try eating something at that time.  I have found you need to eat enough (I find half a medium sized carrot works but only after midnight.  I have a friend you wakes with RLS and she finds porridge helps her.)   GOOD LUCK

[Stevietoo]

Why do we go to the loo so much? Seems a common thing... any ideas?

 

[Shirl]

Hi Stevie, good to meet you

This reply is long and Marina might decide it is going off topic so I will move it if shown where it should be! However, getting up in the night for the loo is a key feature of insomnia, whatever the cause and your GP should know you have problems.

 

As you know, in those of us with MS, the problems with our nervous system lie within the spinal chord and/or the brain. All the movements and functions we make consciously (on purpose, might be a better term) are the result of the nervous system - motor control being the one we understand easiest.

 

We also have an autonomic nervous system (wikipedia link) that is not in the conscious control. So hearts beat, blood flows, and urine is collected in the bladder. Then the urge to empty the bladder occurs.

 

Now imagine the wiring mechanism of brain-spinal chord-bladder being interrupted by MS and you might see how the urge to wee becomes out of control. Either we can't get to the loo fast enough or we get there, convinced the bladder feels full, and little or nothing flows.

 

There are many types of bladder problems and I've had them all. This is not a boast! I am happy to respond to anyone's specific queries but I won't write my Urinobiography on here because it is best to be concerned about what is happening and not what might happen. Mine is a 25-year story so I do think discretion is best.

 

Hope I've helped a little (or a lot).

[Shirl]

On 20/09/2018 at 02:03, PaulX said:

Reading this at 2am after 4 hours in bed just looking at the ceiling waiting for sleep to come by.

I was sorry to read this Paul. If you normally sleep on your back, is it possible to turn on one side and tuck yourself so that your face is not staring into the room? A change of pre-sleep position and focus is worth a try if physically possible.

[Shirl]

5 hours ago, popsie said:

After 20 years of clock watching I am finally sleeping better, (still wake 2 or 3 times to go to loo but now can go back to sleep) and have a combination of Sativex and carrots to thank...

Hi Popsie

I always have a hot drink - not necessarily milky - before bed, whatever the time. It is the part of my routine I cannot give up. I'm sure the liver detox is involved, as well as habit.

[Stevietoo]

1 hour ago, Shirl said:

Hi Stevie, good to meet you

This reply is long and Marina might decide it is going off topic so I will move it if shown where it should be! However, getting up in the night for the loo is a key feature of insomnia, whatever the cause and your GP should know you have problems.

 

As you know, in those of us with MS, the problems with our nervous system lie within the spinal chord and/or the brain. All the movements and functions we make consciously (on purpose, might be a better term) are the result of the nervous system - motor control being the one we understand easiest.

 

We also have an autonomic nervous system (wikipedia link) that is not in the conscious control. So hearts beat, blood flows, and urine is collected in the bladder. Then the urge to empty the bladder occurs.

 

Now imagine the wiring mechanism of brain-spinal chord-bladder being interrupted by MS and you might see how the urge to wee becomes out of control. Either we can't get to the loo fast enough or we get there, convinced the bladder feels full, and little or nothing flows.

 

There are many types of bladder problems and I've had them all. This is not a boast! I am happy to respond to anyone's specific queries but I won't write my Urinobiography on here because it is best to be concerned about what is happening and not what might happen. Mine is a 25-year story so I do think discretion is best.

 

Hope I've helped a little (or a lot).

This might have to be moved to another discussion, but not sure how - I also have dumping syndrome, that's the stomach (no, not lower!) and so is on the autonomic nervous system, is it likely that it might be connected to the MS? That still hasn't been officially diagnosed (but losing a little bit of control in hands/leg).  Any ideas, feedback about that would be useful.

 

[Stevietoo]

On the insomnia side, I feel for you. It can be awful. I do eat or drink something before bedtime, usually one of the nut milks as dairy is a bit tricky. And recently sleeping the best I have for years: I partly put it down to incorporating a load of fresh, natural anti-inflammatories in my diet, but hey, it could be a coincidence. 

 

[Shirl]

5 hours ago, Stevietoo said:

This might have to be moved to another discussion, but not sure how - I also have...

 

Hi again Stevie

 

I've had to look up Dumping Syndrome. Whether it is linked to MS is not something I could even guess.

 

However, I know what waiting for tests/results/diagnosis/advice/treatment is like. We call it Limboland. Are you in this category...I will look at your other posts & profile. 

 

It is not always wise to presume a condition is related to another illness unless told by a specialist. The main thing is to be treated on a symptomatic basis, so whatever advice you've had for this gastric problem probably wouldn't change if you knew you have MS. 

 

Do you keep a symptom diary? A few words whenever you are troubled by your health will be useful when seeing a GP or specialist.

 

I hope this helps and supports you rather than adding to your concerns.

[PaulX]

6 hours ago, Stevietoo said:

On the insomnia side, I feel for you. It can be awful. I do eat or drink something before bedtime, usually one of the nut milks as dairy is a bit tricky. And recently sleeping the best I have for years: I partly put it down to incorporating a load of fresh, natural anti-inflammatories in my diet, but hey, it could be a coincidence. 

 

I don't really drink coffee, but I do try and not have a cup of tea after 6ish. I also like to not eat too late. i would rather skip a meal then go to bed still feeling full.

I have read you shouldn't drink alcohol before bedtime. It's an interesting theory but not one I can verify. 

@Shirl I do believe I tend to sleep on my side, but I don't really know, I am asleep.

I will listen to instrumental music, typically Tangerine Dream, if I feel I am not going to drop off quickly.

 

I sorted the sleep problem out the following night, thanks to Zolpidem Tartrate. Two draw backs with them. 1) It can leave you feeling really hung over in the morning. 2) It can make you be a little bit inappropriate, but we will quickly gloss over that. 

 

Paul

 

 

[Shirl]

5 minutes ago, PaulX said:

 

@Shirl I do believe I tend to sleep on my side, but I don't really know, I am asleep.

I will listen to instrumental music, typically Tangerine Dream, if I feel I am not going to drop off quickly...

 

 

  I did think that! I'm glad you are maybe finding some answers. The worst thing to do is repeatedly think "I need to sleep" which is why I mentioned the piece I read recently about deciding you will sleep and assuming that will happen... on your back, standing on your head or in the dog's basket... as long as you get the hours you need.