A little help with insomnia

[marti]

I have read so many posts about insomnia and MS, which makes me feel like I'm not alone in this problem. I recently read a little article about using Sea Bands, which are the motion sickness bands you wear on your wrists. I tried them and they actually helped me get to sleep. I'm still exhausted, but I feel like I am getting a little better sleep. Just thought I'd pass this along. I have to say, I am still using half a Clonazepam some nights. So between the two things I am somewhat better in the sleep department.

[lukeduke]

I do not really have insomnia as long as I take the melatonin. My problem is narcolepsy. I take my melatonin at night, go to bed early, and don't get much more than five hours a night. I take Modafanil (Provigil) for the narcolepsy. 200 mg/day and I'm fine.

Not having the Modafanil cost me a job of 10.5 years. My insurance there was not approving it for some reason. My pharmacist was giving it to me for his cost. That was still over $100/month. Now with that GoodRX card you can download on your phone I can get a 90 day supply for ~$100. I can't function without it.

[Mamabug]

I do not really have insomnia as long as I take the melatonin.

Melatonin never helped me much. Valerian Root works well for me.

[Jules A]

As insignificant as it may sound sleep hygiene can be a major game changer. The biggest single common factor I have seen among those complaining of insomnia is day napping, yes even a few minutes, and inactivity. If someone is inactive the body doesn't need as much sleep and yet anxiety seems to run amok if we aren't getting the perceived 8 hours that seems to be considered "normal" when in reality 6-10 hours is well within a normal amount depending on the individual.

https://www.umms.org/midtown/health-.../sleep-hygiene

[Myoak]

I do not really have insomnia as long as I take the melatonin.

There are a number of studies suggesting that melatonin is helpful in MS in addition to being helpful for insomnia. Here is the most recent published study... Arch Med Res. 2018 Dec 27. [Epub ahead of print]

Efficacy of Melatonin on Serum Pro-inflammatory Cytokines and Oxidative Stress Markers in Relapsing Remitting Multiple Sclerosis.

https://www.ncbi.nlm.nih.gov/pubmed/30595364

Abstract

"Multiple sclerosis (MS) is a chronic inflammatory disease, which leads to focal plaques of demyelination and tissue injury in the central nervous system (CNS). Neuroinflammation and oxidative stress are involved in the pathogenesis of MS, promoting tissue damage and demielinization.

Current research findings suggest that melatonin has antioxidant and neuroprotective effects. The aim of this study was to evaluate the efficacy of melatonin on serum pro-inflammatory cytokines and oxidative stress markers in relapsing-remitting multiple sclerosis (RRMS).

36 patients diagnose with RRMS treated with Interferon β-1b (IFNβ-1b) were enrolled in a double bind, randomized, placebo controlled trial. The experimental group received orally 25 mg/d of melatonin for 6 months. After melatonin administration, we observed a significant decrease in serum concentration of pro-inflammatory cytokines and oxidative stress markers...

Melatonin treatment was well tolerated and we did not observe significant differences in rates of side effects between the two groups. We concluded that melatonin administration during 6 months period is effective in reducing levels of serum pro-inflammatory cytokines and oxidative stress markers in patients with RRMS.

These data support future studies evaluating the safety and effectiveness of melatonin supplementation in RRMS patients."

[loopey]

Melatonin and Valerian

I use a combo of melatonin and valerian root which works for me. I wake up several times a night and take another pill and go right back to sleep. It has been a real blessing for me.

[marti]

I've been on 1/2 Clonazepam for sleep for years. But I'm weaning off of it now. Last night I got zero sleep. I took a dose of Nyquil at about 1:00 which did nothing. I'm a zombie now and not feeling very good. I hate this insomnia!! The last week has been different in that nothing seems to help me fall asleep very well. Although until last night I was sleeping a little bit. Glad my question was opened again. I can go back and take advantage of the replies and suggestions.

[Mamabug]

Melatonin never worked for me. And my functional medicine doctor does not recommend it.

Valerian works great for me, especially if I use it in combination with relaxation techniques or meditation.

My functional medicine doctor also believes that, whether we recognize it or not, stress is what keeps us from falling asleep. Herbal Tea (chamomile, peppermint, etc), supplements (multivitamins, Omega 3, Valerian, magnesium, etc) and essential oils (lavender, chamomile, etc) that help with anxiety often help you sleep too.

[MyGirlsMom]

Marti, I too take Klonopin at bedtime...either .50 of .25. Usually try to take .25 unless it was a tough day or MS symptoms are bad. I would love to get it off it but insomnia then haunts me too. I also take melatonin (1/2 mg) but after reading this thread maybe I should take more melatonin. Sigh...I just don’t know. Getting some daylight helps along with a walk outside.

Hang in there!! You have been through so much this past year....please give yourself some grace to get through this too.

[bonniebennet]

I had terminal insomnia (terminal means end, so basically I could fall asleep but I'd wake literally an hour later and lie there) so bad I finally asked my doctor about it, who referred me to another doctor who in a single visit cured my insomnia for life.
This is actually psychology, not physiology.
He talked about it for ten or fifteen minutes, but in essence the story was this:

• estimate how much time you actually sleep at night (add every 1/2 hour or longer block to arrive at a total). Call that X. In my case X was 4 1/2 hours in various small bits during the night.
  
• stay up (and I mean UP) as in sitting or some other state where you will not doze off until X hours before your alarm goes off. You may be surprised but this is harder than it sounds.
  
• spend two nights on this schedule then set your schedule 30 minutes earlier.
  
• repeat step 3 until you hit 7 or 8 hours a night, then stop.

Now if I find myself starting to shift back to bad sleep behavior, I can do an abbreviated version doing each increment one night only and I'm back on track. I need to do this once every few years.

[marti]

I had one completely sleepless night last week. So the last 2 nights I took a half Clonazepam and slept fine. I was still tired when I woke up, but I live in that condition!! Anyway, my neuro has refused to prescribe the Clon anymore because I am over 65. This is the one med that actually works for me and I only take a half pill! So that mean that 0.25 mg are working well for me. Not an addiction at that low dose. Maybe a dependence, but it's not bad. The effects of insomnia are worse that taking a small dose of Clonazepam. Some night I lay off the Clonazepam and use something else, like a Unisom. They don't work as well.

Thanks for all the suggestions. I just need to/love to hear from other insomniacs and MS-ers. This is a hard boat to row.

[Seasha]

Marti - it's a shame that your Dr won't prescribe it for you anymore. I've been an insomniac for years now and take trazadone. I hear it's an "old school" med, but it's worked for me really well!

I've tried all the natural herbal ones and melatonin but they did nothing for me. My Dr had me taking 150mg/night until recently. Now it's 75mg along with an anti-spasm med for recent severe nighttime spasms.

I hope you find something!! I know I'd be up all night without a little help from my friend

[marti]

Marti - it's a shame that your Dr won't prescribe it for you anymore. I've been an insomniac for years now and take trazadone. I hear it's an "old school" med, but it's worked for me really well!

I've tried all the natural herbal ones and melatonin but they did nothing for me. My Dr had me taking 150mg/night until recently. Now it's 75mg along with an anti-spasm med for recent severe nighttime spasms.

I hope you find something!! I know I'd be up all night without a little help from my friend

I think this is the med I tried once and had hallucinations. It was either Trazadone or Tramadol. Not sure anymore. I do have another doctor who is willing to allow me the Clonazepam. It my neuro blows me off this time I will turn to my other doctor. A bottle of them lasts me a long, long time since I cut them in half. Half a pill is very effective. Thanks.

[Seasha]

I do have another doctor who is willing to allow me the Clonazepam. It my neuro blows me off this time I will turn to my other doctor. A bottle of them lasts me a long, long time since I cut them in half. Half a pill is very effective. Thanks.

Good to hear, Marti - sweet dreams from here on out!

[Mamabug]

I've been an insomniac for years now and take trazadone.
... I hear it's an "old school" med, but it's worked for me really well.

I also used to take trazedone. It worked sometimes -- was fairly effective. Valerian (supplement) plus meditation works better for me.