Sorry to bring up insomnia again...

[Mamabug]

I think this music thing is similar to what you're talking about. It's called Wholetones 2sleep. The music is played at a very slow pace... can't think of how to describe it, but it's very soothing. Just doesn't help me sleep.

I think you're right. I hadn't heard of Wholetones before so I looked it up. It uses healing frequencies, so, yeah; that's similar.

The binaural beats I've listened to aren't music; they sound more like white noise. But maybe some are music.

[MyGirlsMom]

Marti,
I haven’t checked in for a while and I am so sad to see you struggling so badly with sleep. If the neuro won’t help, Will your PCP or any other doc assist. My psyc doc is very helpful with meds when I can sleep because she knows how important sleep is to all of us.

I really like the suggestion of a sleep study....someone new to take a fresh look at what can be causing this. You have had such a tough year and I would think one of your docs could direct you to a spleen specialist.

You said you don’t have a cell phone but do you have an iPad? Recently I read about Autonomous sensory meridian response. ASMR. There are numerous ASMR you tube videos that you can find that help people fall asleep. There was an article about this with a young girl that makes these videos in Fort Collins, CO.

Here is the link although I am not sure if the moderators will allow it: google.com /amp/s/amp.coloradoan.com/amp/3540121002 (I apologize if you I wasn’t supposed to include).

Anyhow, just another idea. I hope you can get some help soon....I have been in that place and it is absolutely awful!! Hugs to you Marti!! 💕

[palmtree]

I think the idea of a sleep study is humerous. Once I asked them how it is conducted. They hook you up to all these wires in the evening and tell you to go to sleep. Well, I have news for them. This subject will not go to sleep.

At 5:00am they will come in to “wake me up” and speaking in an authoritative tone tell me I have severe insomnia.

So I would be lying there for 8 hours bored out of my mind. When the subject will not go to sleep there us no sleepy study. These tests have become popular because a very small percentage of the population has sleep apnea. Most who are diagnosed cannot tolerate the contraption that you are supposed to wear anyway. The whole thing has been a money making gimmick.

[marti]

I think the idea of a sleep study is humerous. Once I asked them how it is conducted. They hook you up to all these wires in the evening and tell you to go to sleep. Well, I have news for them. This subject will not go to sleep.

At 5:00am they will come in to “wake me up” and speaking in an authoritative tone tell me I have severe insomnia.

So I would be lying there for 8 hours bored out of my mind. When the subject will not go to sleep there us no sleepy study. These tests have become popular because a very small percentage of the population has sleep apnea. Most who are diagnosed cannot tolerate the contraption that you are supposed to wear anyway. The whole thing has been a money making gimmick.

Yes, I've been thinking about this too and I agree it is useless for most of us. I know I wouldn't be able to close my eyes! And I'd think that most patients would know if they had sleep apnea!

[MSLazarus]

Do you take it every night? I don't really mind the idea of taking meds, but it worries me that this is an every night event for me. Is it just an effect of MS?

No..I do not take NyQuil every night. But when I am having a spell of not sleeping I might take a swig several nights in a row. Let’s say I do this half a dozen times a year. I am a farmer so when I spend days fiddling on the farm I usually can sleep. That is 6 months out of the year.

Still, I rarely sleep well on Friday nights...have to get up at 4am Saturday morning to go to farmer’s market. It is extremely frustrating and also not good for being productive the rest of the week.

So, if you can’t buy a farm and play in the soil I just don’t know what will work other than NyQuil...!🤓...maybe a warm dog to sleep by your side!

[marti]

Getting desperate... what do you all think of using wine coolers? I'm not a drinker, but I've had people tell me to try wine. I figure that the wine coolers are probably not as "wine-ey", meaning strong.. so they might help. I've tried every other trick in the book so why not?

[marti]

Marti,
I haven’t checked in for a while and I am so sad to see you struggling so badly with sleep. If the neuro won’t help, Will your PCP or any other doc assist. My psyc doc is very helpful with meds when I can sleep because she knows how important sleep is to all of us.

I really like the suggestion of a sleep study....someone new to take a fresh look at what can be causing this. You have had such a tough year and I would think one of your docs could direct you to a spleen specialist.

You said you don’t have a cell phone but do you have an iPad? Recently I read about Autonomous sensory meridian response. ASMR. There are numerous ASMR you tube videos that you can find that help people fall asleep. There was an article about this with a young girl that makes these videos in Fort Collins, CO.

Here is the link although I am not sure if the moderators will allow it: google.com /amp/s/amp.coloradoan.com/amp/3540121002 (I apologize if you I wasn’t supposed to include).

Anyhow, just another idea. I hope you can get some help soon....I have been in that place and it is absolutely awful!! Hugs to you Marti!! 💕

Thank you for the suggestions. No, I don't have any electronics except my desktop computer. I do have another doctor/friend who helps me with some meds from time to time. I'll turn to her when I am out of options. My neuro knows how things have been for the last couple years. All my doctors know about the problems. But that's as far as they will go... just acknowledge that it has been rough. The neuro is offering to get me into a therapy for insomnia. They just all tell me it will take time. So, not much help from any of them. Guess they figure I'll just "get over it". And, maybe I will. Thanks again.

[marti]

No..I do not take NyQuil every night. But when I am having a spell of not sleeping I might take a swig several nights in a row. Let’s say I do this half a dozen times a year. I am a farmer so when I spend days fiddling on the farm I usually can sleep. That is 6 months out of the year.

Still, I rarely sleep well on Friday nights...have to get up at 4am Saturday morning to go to farmer’s market. It is extremely frustrating and also not good for being productive the rest of the week.

So, if you can’t buy a farm and play in the soil I just don’t know what will work other than NyQuil...!🤓...maybe a warm dog to sleep by your side!

We used to be on a farm too. I miss the solitude. I have more than a spell of sleeplessness. It seems to go on and on, all the time. I'm getting into the yard work a little. There is only so much I can physically handle on my own. This is getting me down... not sure how long I can go on like this. I've had a few nights of sleep lately, but with the help of Unisom or Ambien etc. It amazes me to find out how many people are stuck in this pattern. And how many have MS.

[Mark785]

When I had insomnia one of the yoga techniques helped me. See this kind of yoga https://en.wikipedia.org/wiki/Yoga_nidra. The goal is simple, if there is no other way out, you need to recuperate in a short period of time to help the body.


One of the most important things is what you sleep on. Change your mattress to like: talkaboutsleep.com/best-mattress-for-neck-pain. You can read information about the mattresses in this forum, there is everything about them:
themattressunderground.com/mattress-forum/index/22359-nsc-medical-mattresses-at-costco-ca. This will allow the body to recover faster.


I had severe neck pain, insomnia and a lot of fat, and was able to solve all these problems with this method. Hope this helps.

[marti]

Just a report.... I have had 4 days in a row with "better" sleep. One night I did not take any meds at all and slept well. Still exhausted in the morning, but I will take any kind of sleep I can get.

Trying to find the right combination of meds, although I am limiting them as much as possible.

Thank you all. These responses mean a lot to me.

[marti]

The sleep streak is over again. Back to not sleeping. I guess I spoke too soon.

[MyGirlsMom]

The sleep streak is over again. Back to not sleeping. I guess I spoke too soon.

So, so sorry to hear! This is just awful for you! Sending prayers....🙏🏼

[Seasha]

The sleep streak is over again. Back to not sleeping. I guess I spoke too soon.

Hi Marti - did you notice doing anything differently before you went to bed for those nights when you slept better? I'm wondering if it would benefit you to keep a log each night -like from dinner time to actually going to bed- to notice any triggers that might be keeping you up? Just a thought ??

[TaoWarrior]

Illegal or not in your state I would try cannabis.

It works great for me 30 min before bed a few puffs (whole leaf not CBD or extracts or whatever) and I'll go from wide awake to yawning.

I also have a bedtime routine that I start as soon as I finish those puffs. In the past year between the cannabis and the routine I have only had 2 nights of issues. If Johnny Law wants to say something to me about it, well I'll have insomnia in jail

I hope you find your magic cure whatever it might be.

[marti]

Update. I met my new primary NP last week. We talked about this insomnia a lot. She ordered Trazadone... something some of you have suggested. So far.. it's slow to work and dries me out terribly! But I talked with my doctor friend who has MS herself and she told me it takes a few days or so to begin to work.

I don't want to sound like an addict, but Xanax has been my go-to, works well, no side-effects med. Same for Clonazepam. But these doctors just refuse to allow it because I am 68 years old. The first Trazadone I took, I nearly fell when I got out of bed. That is something that has NEVER happened to me with the tried and true meds in the past. I don't use Xanax for sleep. But it does help if I've had an anxious day.

I'll give this new med a chance. See what happens. I'm just so frustrated with these doctors who are afraid of being sued. I understand it, but that doesn't help me with this problem. This run of insomnia is going on 3 months. If this keeps up I'll drop from sheer exhaustion.

I have constant... always... never ending tinnitus in one ear. I know this is not helping the sleep situation. It is caused by my central nervous system glitch. Don't know what to do about it. Could this be part of the problem??

Thanks again guys. I appreciate any ideas you all have.