This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all-

Just wondering how many folks can include irregular sleep in their bag of MS goodies?

My hubby had never slept well...always had to listen to music or talk radio to fall asleep, didn't need more than six hours. Had an "over-active " mind. Never had regular sleep habits (I'm an eight hour 10pm-6am gal, so it became a joke in our family) He was also a snorer and thrasher, and a major blanket stealer

When he had his first official MS attack last spring and was diagnosed, it all began to make sense.

Now that he is on Provigil during the day and baclofen at night, he sleeps like a baby. I've actually checked him during the night to make sure he was still breathing, he's so quiet. His breathing is regular and calm (no snoring) and his spasms are more like twitches. He comes to bed at 10pm, reads a bit, and sleeps until we both rise at 6am.

My theory is that the provigil is re-training his brain to be awake during the day, and calm at night...like reprogramming his circadian rhythms.

Anyone else have sleep stuff related to their MS?
Inquiring wives want to know-
best,
The well-rested AC

the best sleep time i had was when i was at my worst. i've always been a very light sleeper, high anxiety. during my dx attack i slept like a baby. normally if i want a good night's sleep i have to exert myself during the day, for instance i sleep great after a day at work on the hill.

Hi there

I have also always been a very light sleeper - may have contributed to my ms fatigue - the lack of quality sleep. However, I now take so many meds that have drowsiness as a side effect, that I find it difficult to wake up! But still have day-time fatigue. Glad the Provigil is working for your hubby - I tried it and it just made me feel as if I had consumed loads of caffiene - and it made me vomit! I then tried Ritalin, which was even worse...

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Al

My wife has had sleeping issues as long as I have known her. She goes through spells where she's tired at night and sleeps great and then she will have times when she struggles with insomnia. I know it frustrates her when she goes to bed and just stares at the ceiling.

In the first few years of our marriage, she would take prescription sleeping pills when she needed to. I have to say that there were nights that were quite interesting when she would take those. She would have the craziest dreams and sleep talk and walk. So, she worked her way off of all prescription meds and now uses other methods to help.

So, yes, we have definetely had issues and are still dealing with those issues at times. One thing I do know is that stress and caffiene have a direct affect on my wifes sleep patterns. It becomes a vicious cycle with her. She gets stressed, drinks more caffiene, has more problems sleeping which all leads to more MS fatigue and issues which seems to lead to more sleeping problems until she finally crashes. When she does crash, she may sleep for days to catch back up.

I hope your husband's sleep patterns get better. It is interesting that you used the words "over-active mind" because my wife would say the same thing. She will often watch TV to "wind" down to be able to go to sleep.

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Wife diagnosed in 1990 - mywifehasms.blogspot.com

yep overactive mind, exactly. it's pretty hard for me to relax, i have to be figuring something out, i don't have the patience for tv usually. i have to read myself to sleep most nights. if i put the book down and turn out the light i wake right back up. lately i have tried playing a cd to drift off to, so at least it's dark. if i don't have a story or a sound to focus on my thoughts go so random i'll be wide awake for ages.

I have always had problems sleeping, and staying asleep (ie way before MS diagnosis); but more so with falling asleep.

I now take Modafinil (provigil) on the odd occasion (like yesterday & today). The other times it hasn't made it any harder for me to fall asleep, but last night I was up till 2am. I do not know if the modafinil had anything to do with it. The good thing was that i didn't feel tired or out-of-it at any point of today.

I definitely chalk up my sleep issues to MS. Even when all I was showing was ON, I started waking frequently. My bladder keeps me up frequently now, but that's another story and wasn't causing me sleep problems in terms of getting up to pee at night for a couple of years. It was wierd. I would fall asleep almost instantly upon getting in bed, but would wake up after a couple of hours WIDE AWAKE .

So even in the beginning when I was exercising like mad and basically totally physically normal except for my eyes, I slept like crap. I wouldn't wake with anxiety or fear or anything on my mind. I would just wake up. I read some about circadian rhythms and started to notice the temperature of my body when I would awake and am convinced that my body was releasing my "wake up hormones". I forget which one, but if I have this right, your body releases Cortisol or Melatonin respectivey to put you down and then to wake you up. I think the process is that your body heats itself up from the release of which ever one it is and you start the process of waking up. Well I would wake up literally bathed in sweat and would have to read for like an hour to get back to sleep.

Since then, I don't wake like that anymore, but rather I wake to pee alot, but am still drowsy and normally go right back to sleep. So I think there are two reasons why I don't/havent' sleep well, and I think they are both due to the MS. However, I feel if my bladder was all right that I could sleep uninterrupted now.

Hi Loobie,
I wanted to let you know that my wife had bladder issues for a short time. We were actually able to stop them using Bowen Therapy. I don't know if you have ever had a Bowen treatment, but it is simple and doesn't take long. After one session she had more control, and after a few sessions she didn't have any issues for a long while. Now when she has any indication of bladder problems, we do a Bowen session and it stops it. Just thought you might want to have an alternative.

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Wife diagnosed in 1990 - mywifehasms.blogspot.com

I will look into it. I pee literally about 4 or 5 times per hour up until about noon. I only void about 4-5 oz. per void, so it takes many "sessions" to empty my bladder. For some reason, it seems to calm down somewhat after lunch. I haven't figured that out yet. I will still pee once or twice an hour until bedtime, but I don't drink anything after 8:00pm and usually only wake twice per night. Once about 2 or 3am and then again about 4. I can usually sleep until it's wake up time (5:30am) after that. Since I'm not wide awake when I get up to pee, it's not nearly as bad as it was when I was waking up and being fully awake. I think I've pretyy much gotten used to how I sleep now. I just hope it doesn't get worse or I'll be cathing before bed.

Believe it or not, I'm actually looking forward to IC because I haven't went to bed with an empty bladder in a loooong time. I don't want to start until I absolutely need to, but I've read about others who have the detrussor-sphincter dissynergy like me who absolutely swear by IC'ing. I just haven't pulled the trigger yet because I'm getting by OK with sleep in my current pattern.

Hey Lew-
That's interesting..the connection you made between body temp and circadian rhythms! Makes sense, since MSers are often heat and cold sensitive. I'm sorry the bladder issue is making sleep tough. I hope you find some answers...

Cory-
I went to your blogspot. Really nice, honest writing about your wife and your partnership in dealing with her MS. She's a lucky gal. My husband is also using Swank and supplements to help deal with his MS, but he's also doing well on Copaxone and the meds prescribed. The provigil has been such a help dealing with crippling fatigue during the day.

The point I was trying to make is that my husband is sleeping MUCH more soundly now that he is on MS meds and a new diet.

We've been married almost 24 years- he's 44 (college sweethearts) and he never could stay asleep for eight hours straight, and now he is! I'm not sure if I should attribute it to medicine, healing, or disease progression (shudder.) I'm trying to stay positive, and looking at it as a healing of his sleep/wake cycles.

Thanks for sharing your sleep stories...
best,
AC

I take Zopiclone to help me get to sleep, but I seem to get into a pattern which lasts for a few weeks at a time and then changes: I will snap wide awake at exactly the same time every night, (often needing a hefty slug of whisky to get back to sleep), and it will stay like that for a while. Then suddenly I'll either begin sleeping right through or waking up at a different time – again, regular as clockwork – for several weeks.
My sleep pattern is disrupted, and yet seems to have a strange, internal, pattern of its own – almost like your bladder, Loobie.
Of necessity, my nighttime routine is exactly the same so I've always put it down to MS. Body temperature follows a natural rhythm during sleep, falling to its lowest at around 4.00 AM, but people with MS often have problems regulating body temperature, so it sounds pretty logical to me that an unscheduled rise or fall could trigger the waking up process,

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Dom

i think sleep is healing, personally

Out of curiosity, has anyone done a full hormone panel to see what your body is producing in the middle of the night. The test takes samples every four hours so you have a complete view of day and night. My wife has done a couple of the tests, and they have been very eye opening. Her Cortisol was firing off in the middle of the night which was causing her to wake up and then not be able to go back to sleep. She used a customized hormone cream to help balance her hormones, and it seemed to help.

Sad to say we have not kept up the hormone cream because of the expense, but we know it works. She was also taking a couple of things everynight that was designed to reset her melatonin release. She would take a combo of melatonin, Cal-Mag and Gaba at the same exact time everynight. She would only do this for a short time to reset things, and then she would be back to a normal bedtime.

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Wife diagnosed in 1990 - mywifehasms.blogspot.com

Cory...never heard of the 24 hour hormone panel. Sounds fascinating. How do they do it? Sleep clinic or at home? Could you get your wife's hormone cream thru insurance? I've used a wild yam progesterone cream (OTC) for awhile. No prescription, not too expensive, but it's not customized.

It seems like disturbed sleep is just part of the arhythmia of MS. My husband started using a daylight-lamp in his office after diagnosis, for vit. D. He tries to get outside in sunlight (we're in so. cal.) at least an hour a day. Maybe that's helping? I'm so thankful he's sleeping better. I'm going to take Jimmylegs view- it's healing.

I just wish we'd had him diagnosed sooner. He's had the sleep disturbances, fatigue, depression, urinary problems, etc. for years. No one ever thought MS. From his MRI, we know he's had this a while.

Husband's uncle is a doc. He recently told him that sometimes it takes an autoimmune disease to wake people up to the importance of health, and taking care of yourself. I dunno. Must be easier ways than MS.
later,
AC

Does he think it is preventable? By better health habits?

In answer to the thread question- I sleep like a log. I fall asleep almost as soon as my head hits the pillow. Lately, though, I'm having a hard time getting up in the morning. Definitely a change for me. I'm a drag in the a.m. It cuts time form the day and I'm not getting things done.