Yes, thank you for sharing this! My Vitamin D was low when I was first diagnosed as well. My symptoms first presented as neurological in nature and I've always had difficulty getting a good night's sleep. I can go to sleep fine but wake up during the night. When I was first diagnosed I had very significant neurological symptoms and my muscles would have slight jerks at night when I trying to go to sleep. I was given .5mg of Klonopin at bedtime initially by a neurologist. I would take 1/2 tablet at bedtime and it would help me sleep very well. It is almost like my muscles can truly relax and not be so "jumpy." I still have some of those left and I've told my rheumy how well it helps me sleep and that I feel so great the next day because I've slept well the night before. At this point, she has not wanted to give me an rx for this because she says it is a controlled substance. I don't take any other controlled substances and dont have any history of substance abuse/addiction. It helps me tremendously so I'm a little frustrated by this - I know she is just trying to practice cautiously. Someone said lyrica might help me sleep better at night - if she opposed to giving the klonopin (just enough for 1/2 tablet at bedtime). Could I build up a resistance to the klonopin? I don't know. What do you all recommend? What has helped you all get a better night's sleep? or should I talk to my rheumy in greater detail and push for more help with this? It is amazing how much better I feel after a good night's sleep!!!!!
She probably doesn’t want you to depend in klonapin to sleep. It has the ability to make you NEED it. I forget right now( brain fog) but there are alternative foods and herbals that do what klonapin does when consumed over time.
Thank you for the reply. I will do some research on it. :)
I’ve had the same issue w muscle twitches. My dr also put me on klonopin .5 mg for anxiety. I really don’t have that much anxiety anymore. About 2 yrs ago my psych dr gave me desryl 100mg at 3 per night. It worked for a while. Insomnia kicked in and so I was put on klonopin 1mg per night. Has helped so much n I only take at night. No dependency at all. Don’t feel like I gotta have it during the day cuz I only take one at bedtime. A friend also gave me a recipe to try that is all natural taken 1-2 hrs before bed. I personally tried it n didn’t work for me but it did her. U may want to give it a try. I’ll get the recipe n reply again.
I’m so sorry but couldn’t find recipe. I know it’s natural cherry juice, banana, pure vanilla, ice, milk. Try looking it up on the Internet. Think it came from dr. oz.
Poker Face said:
I’ve had the same issue w muscle twitches. My dr also put me on klonopin .5 mg for anxiety. I really don’t have that much anxiety anymore. About 2 yrs ago my psych dr gave me desryl 100mg at 3 per night. It worked for a while. Insomnia kicked in and so I was put on klonopin 1mg per night. Has helped so much n I only take at night. No dependency at all. Don’t feel like I gotta have it during the day cuz I only take one at bedtime. A friend also gave me a recipe to try that is all natural taken 1-2 hrs before bed. I personally tried it n didn’t work for me but it did her. U may want to give it a try. I’ll get the recipe n reply again.
I can identify - I was never a good sleeper even before I developed lupus, fibro, & all my other health problems, and between the pain and the meds that disturb sleep & cause nightmares, a “good night’s sleep” is just a faint memory. I’ve tried every popular sleep drug on the market, and none helped at all. I knew from having been given it a long time ago that klonipin has always been the one thing that has ever helped me sleep, and fortunately I have a doctor who knows and trusts me enough to prescribe a small dose for me on an ongoing basis. She decided the damage that the bad sleep was doing to both my health and my quality of life made it worth it, that we simply HAD to do something to help me sleep - it was affecting every aspect of my life & health.
But I will say, it’s not a magic pill, and it has taken vigilance on my part - & is an ongoing battle- to establish & maintain the good sleep habits that enable the klonipin to help. I force myself to start winding down in an almost-dark, quiet room an hr.before bedtime, take my bedtime meds & turn the lights out 30 mins. before, and if I’m not sleepy (which I’m usually not) I turn the light level down on my tablet and read something boring or play solitaire for a bit. This routine gives my mind & body both time to wind down, and staging the light level down seems to trigger the biorhythm part of my brain. I’ve also finally fixed my room so there’s virtually no light - no glow screens, night lights, etc. , and I even got blackout curtains to block outside light. I also resort to earplugs if there’s ambient noise I can’t eliminate.
As far as other things you can take besides klonipin, there are several OTC herbal remedies in most pharmacies that are better than nothing. Valerian is often an ingredient, and it has a component that is a natural parallel to the drugs like klonipin and Valium. Just be sure, if you use any OTC remedy, to cross-check for compatibility with your prescription meds - your pharmacist should be able to help. I also take, at my neurologist’s recommendation, 5 mg. of melatonin, which seems to help. Another possibility that has worked for me to some degree, if you can’t get the klonipin, is OTC Benadryl - you can just get generic diphenhydramine. It’s the main ingredient in most of the OTC non-herbal sleep meds (and again, check with your dr. or pharmacist for interactions.)
I don’t know how much RX medication you’re on - if you’re like most of us, it ends up being quite a bit. One last trick I’ve learned is to read the patient info on all of them, and if possible within following the prescribing instructions, take anything that interferes with sleep in the morning, and save the ones that “may cause drowsiness” for bedtime if you can - but only if you can do it & still follow the label instructions!
I know this sounds like a lot of picky stuff, maybe even silly, but I’ve struggled with it for so long, and now that I’m just beginning to get a normal amount of sleep per night (even if it is interrupted a few times) I can tell you it’s SO worth it, to do whatever it takes. And my insomnia really had snowballed on me- the longer it went on, the worse it got. (I went about 5 years never getting more than 3-4 hrs a night, and never more than 1-2 hrs at a time.) So for me, anything it takes to fix it is worth it, and it’s a process, but the progress I’ve made already has made a big difference in my overall health, as well as improved my ability to tolerate the bad days when they happen. Hope at least some of this is helpful. Feel free to pm me if you would like to chat. Good luck!
Edit: forgot to add, if you’re taking vitamin D, be sure to take it in the morning or noon. Apparently taking it tricks the brain into going “ooh! Sunshine! Daylight!” and taking it late in the day can cause sleep problems.