Seem to have stopped sleeping completely.

[Seasha]

Hope you get your nap and it perks you up

Well, I just woke up from an hour and half nap. Had husband wake me at that time so I wouldn't sleep all day.

Sometimes at night I also write important things down to remember. I get it that things sometimes seem clearer during the quiet hours.

Hang in there and maybe it is time to up your dosage?

[oceanpride]

There’s just no way I can fall to sleep with out a sleeping pill. And if I lighten up on the dosage I get horrible nightmares. I’m pretty sure it’s neurological and MS related. I haven’t napped in years. I’ve bunked with a lot of guys off shore fishing and motorcycle trips over the years and they all seem to fall to sleep right away. My wife falls to sleep right away. It’s no fun being different, which is why I like to come here. It seems we share so much.

[MyGirlsMom]

Seems i battle depression more and more. Sometimes is easier to just sink into the quicksand than go on fighting. This constant melancholy makes even the most basic of tasks a insurmountable chore and the feeling of being alone or a burden to loved ones .

Carolinemf - Yes, sometimes I find myself getting depressed and melancholy. For me I do think the physical symptoms, which are always changing, cause me to have anxiety too.

I think it was Seasha that mentioned overstimulation. That also makes me tired but wired so I can’t sleep. Either I am up an entire night and finallly sleep the next night or I have to take some benzos, which I try not to do, in order to sleep.

Since I had to leave work, this has become easier as I don’t have the pressure to not sleep followed by a 10 hour day...looking back I don’t know how I did it, but perhaps that is why I am no longer working. Ugh.

Just think about all of us struggling to sleep tonight due to all the various reasons, which mostly seem to relate back in some way to MS. 🙏🏼 to all!!

[MyGirlsMom]

There’s just no way I can fall to sleep with out a sleeping pill. And if I lighten up on the dosage I get horrible nightmares. I’m pretty sure it’s neurological and MS related. I haven’t napped in years. I’ve bunked with a lot of guys off shore fishing and motorcycle trips over the years and they all seem to fall to sleep right away. My wife falls to sleep right away. It’s no fun being different, which is why I like to come here. It seems we share so much.

Oceanpride, yup...same here. My husband lays down and is out and I can lay for hours listening to him sleep (and snore). It is so difficult and I agree...it must be MS.

[ElemteacherPK6]

No advice, but I am so sorry! Sleep issues are no fun at all.

[marti]

There’s just no way I can fall to sleep with out a sleeping pill. And if I lighten up on the dosage I get horrible nightmares. I’m pretty sure it’s neurological and MS related. I haven’t napped in years. I’ve bunked with a lot of guys off shore fishing and motorcycle trips over the years and they all seem to fall to sleep right away. My wife falls to sleep right away. It’s no fun being different, which is why I like to come here. It seems we share so much.

I know from the minute I get into bed that I will succumb to a sleeping pill of some kind. Last night my mind was running down alleys again... thinking of all the "what ifs" in my life. I'm constantly trying to "get ahead of all the things that might happen". I think back to the days when I just fell asleep naturally, although I have never been a great sleeper. I've noticed that 2 of my kids have trouble sleeping too. The more you talk to people the more you find out what a huge problem insomnia is for so many.

[90stangg]

The past couple of weeks have been bad. I'll dose off in my recliner for half an hour, so I'll get up and go to bed. I'll just lay there, I might fall asleep about four in the morning just to wake up at five. I'm not tired during the day. It drives me nuts, I used to be able to lay down and within five minutes i'd be asleep.

[marti]

I have to thank all of you for responding to my thread. I didn't expect so much interest in this topic since my neuro doesn't seem to be too concerned about it.

I am honored that you all share this problem and are willing to talk about it. I gave up the best meds I had because my doctor wouldn't allow them anymore. Clonazepam was the main one. It helped me tremendously without side effects. But I guess there are some laws about prescribing them for people after 65. However, I do have another doctor friend who is not afraid to order a few for me from time to time. The best thing is that she is my age and has MS too. So I totally trust her! Sometimes I feel bad about going behind the neuro's back, but I can't go on like this for too long. None of us can.

Hope you all get some zzzz's and feel better. When we are fatigued... everything feels worse.

[Seasha]

Marti and all - Marco posted a thread last fall with a link to an article about poor sleep being common in MS - The article found here is interesting. https://www.msworld.org/forum/showth...on-and-Anxiety

Guess we're not alone.

[palmtree]

It makes me want to cry when I hear that your insomnia has reached the point of not sleeping at all.

I have spent so many nights not sleeping I sort of consider myself an expert on what it feels like to face another day without sleep. And the next one and the next one.

Benzodiazepines have always scared me so that was not something any doctor approached. When wine stopped working it helped to give it up. Then there was melatonin, valerian root, Sonata, Ambien and..,not sleeping.

It is not a psychological thing. I’m not worried about anything. My brain chemistry just wouldn’t make the transition between awake and asleep. And if it did I would be awake again after the first sleep cycle. A sleep cycle lasts about 50 minutes. But it was that REM sleep I craved. The sleep that gets so deep you become paralyzed and dream and dream.

Then there was the bedtime routine which became more and more elaborate as the years went on. Reading the newspaper cover to cover and then reading the same news in Spanish. Eating a large salad all the while. Then when I would feel a little tired-this was a moment that became later every night. It did no good to go to bed before there was some hint that it was possible to sleep. Then take a very warm shower and go to bed in a very cold bedroom. This meant that an air conditioner in the bedroom was a must. Once I was settled in I would get up and make a milkshake. This helped a lot. Getting my body warm and relaxed from the shower and then quickly cooling off my core body temperature with ice cream was a juxtaposition that really helped.

The problem was that I always woke up 2 hours later. I heard this lecture on UC TV from a sleep expert at UCSD. She had some great tips. She said, “you wake up in the middle of the night and what is the first thing you do?(get up and go to the bathroom, get something to eat...?).,NO. if you think about it the first thing we do is look at the clock.
She said, once you do that you’ve woken yourself up. The next thing she said was to never turn the light on. So I taught myself to get up and go to the bathroom without looking at the clock or turning the light on. It worked. I was able to go straight into sleep as soon as I got back in bed.

Then MS comes along.

After my first flare they put me in the hospital for 5 days for observation. It was a kind of MS boot camp. Every morning the neuro would come in at 6:00 sharp. The first thing I would tell her was that I had gone another night without sleep. The primary care doctor would come in later and all I could say was that I hadn’t slept.

The two of them came to the conclusion that the insomnia was doing more damage than the MS itself. My neurological exam showed more deterioration every day do by the 5th day I could not walk without stumbling.

My PCP sent me home with an arsenal of benzos. Restoril, Valium and 3 Xanax per day. I was she shocked! But I tried one thing every night. The winner was Restoril. I not only slept but I woke feeling like I did when I was 16 years old. The Valium and the Xanax I set aside. Bad drugs. She said it is so important to get sleep to keep MS from progressing.

So I take the Restoril and more things have helped: Lyrica, gabapentin, hydroxizine, baclofen, primidone and lots of milkshakes.

I was in the hospital and busy body nursing asked, “do you realize you are takng more than 5 sedating drugs?

One word said it all, “YES”.

But the best cure for insomnia is to get more sleep. This isn’t a joke. I’ve learned that the more I allow myself to sleep the more my CNS stays in a depressed state(that’s not the same thing as psychological depression). Getting overstimulated is my enemy.

[marti]

It makes me want to cry when I hear that your insomnia has reached the point of not sleeping at all.

I have spent so many nights not sleeping I sort of consider myself an expert on what it feels like to face another day without sleep. And the next one and the next one.

Benzodiazepines have always scared me so that was not something any doctor approached. When wine stopped working it helped to give it up. Then there was melatonin, valerian root, Sonata, Ambien and..,not sleeping.

It is not a psychological thing. I’m not worried about anything. My brain chemistry just wouldn’t make the transition between awake and asleep. And if it did I would be awake again after the first sleep cycle. A sleep cycle lasts about 50 minutes. But it was that REM sleep I craved. The sleep that gets so deep you become paralyzed and dream and dream.

Then there was the bedtime routine which became more and more elaborate as the years went on. Reading the newspaper cover to cover and then reading the same news in Spanish. Eating a large salad all the while. Then when I would feel a little tired-this was a moment that became later every night. It did no good to go to bed before there was some hint that it was possible to sleep. Then take a very warm shower and go to bed in a very cold bedroom. This meant that an air conditioner in the bedroom was a must. Once I was settled in I would get up and make a milkshake. This helped a lot. Getting my body warm and relaxed from the shower and then quickly cooling off my core body temperature with ice cream was a juxtaposition that really helped.

The problem was that I always woke up 2 hours later. I heard this lecture on UC TV from a sleep expert at UCSD. She had some great tips. She said, “you wake up in the middle of the night and what is the first thing you do?(get up and go to the bathroom, get something to eat...?).,NO. if you think about it the first thing we do is look at the clock.
She said, once you do that you’ve woken yourself up. The next thing she said was to never turn the light on. So I taught myself to get up and go to the bathroom without looking at the clock or turning the light on. It worked. I was able to go straight into sleep as soon as I got back in bed.

Then MS comes along.

After my first flare they put me in the hospital for 5 days for observation. It was a kind of MS boot camp. Every morning the neuro would come in at 6:00 sharp. The first thing I would tell her was that I had gone another night without sleep. The primary care doctor would come in later and all I could say was that I hadn’t slept.

The two of them came to the conclusion that the insomnia was doing more damage than the MS itself. My neurological exam showed more deterioration every day do by the 5th day I could not walk without stumbling.

My PCP sent me home with an arsenal of benzos. Restoril, Valium and 3 Xanax per day. I was she shocked! But I tried one thing every night. The winner was Restoril. I not only slept but I woke feeling like I did when I was 16 years old. The Valium and the Xanax I set aside. Bad drugs. She said it is so important to get sleep to keep MS from progressing.

So I take the Restoril and more things have helped: Lyrica, gabapentin, hydroxizine, baclofen, primidone and lots of milkshakes.

I was in the hospital and busy body nursing asked, “do you realize you are takng more than 5 sedating drugs?

One word said it all, “YES”.

But the best cure for insomnia is to get more sleep. This isn’t a joke. I’ve learned that the more I allow myself to sleep the more my CNS stays in a depressed state(that’s not the same thing as psychological depression). Getting overstimulated is my enemy.

Wow.... what a great "story". But not a bedtime story right? It sounds like you had MS before you had MS. So at the bottom of this you recommend Restoril? Is that right? I kind of think I took that for a short time way back in time. Is that Lorazepam? Hospice gave that to my husband (and every other dying patient) to calm him and help him sleep. This is absolutely the most frustrating symptom I have. When I was in the first process of being diagnosed I stopped sleeping. Then it just morphed into those restless, sleepless nights that come to all of us at one time or another. I CAN sleep if I take some kind of pill. Right now I'm using Unisom. Sometimes it works, other times.. not so much. I think I will ask the doctor about Restoril, but I doubt he will want to order it.

Anyway, thanks for the good description and all your details. Hope you are getting some rest.

[palmtree]

Restoril is temazapam.

As you may have figured out, anything ending with “zapam” is a benzodiazepine. Alprazolam, diazapam, lorazapam, clonazapam, temazapam...I think that’s all of them.

I hope you have some luck sleeping. Another thing I have observed is that I alway have trouble sleeping in March and April. My father complained of the same thing(he was my insomniac buddy). My theory is that when the earth is changing temperature our bodies can feel it. It doesn’t have much to do with actual room temperature. This year we had such extreme cold that spring is a shock to the system. I can’t sleep as well right now either.

So all those people who love to go out in spring sunshine, enjoy it. I love the fall.

[Carolinemf]

Hi all,
Well after 2 days with almost 0 sleep - can't get enough now.
Nod off at every pause at least the pain and uncomfortable sym have lessened now.
I would guess that this is only a temporary reprieve, but i'll take it

Doc has up'd my dose of paroxetine but i haven't started yet.

Any improvement Marti and Seasha?

[marti]

Hi all,
Well after 2 days with almost 0 sleep - can't get enough now.
Nod off at every pause at least the pain and uncomfortable sym have lessened now.
I would guess that this is only a temporary reprieve, but i'll take it

Doc has up'd my dose of paroxetine but i haven't started yet.

Any improvement Marti and Seasha?

Eh...somewhat better. But I absolutely cannot sleep at night without a helper pill. This is so frustrating. If I'm laying on the couch with the tv turned on I can doze off for about 15 or 20 minutes at a time. I take every minute I can get.

[Seasha]

Yes, Caroline and thanks for asking.

A few months ago, my pcp had me taking a half dose of Trazadone (sleep aid) than what I was used to. Took that along with half dose flexeril (a muscle relaxer for spasms). Well, that didn't help with insomnia, so I went back to my usual full dose of Traz.

What a difference! I can sleep 3 1/2 - 4 hours at a time now. Up to go to the bathroom and back to sleep again. I'm a much happier person now.

I hope your increased dosage in paroxetine helps you!