Thanks for info @becsbuddy – congratulations on getting some good sleep! Doesn't it feel like such a gift? I don't think "regular" doctors are on board yet with CBD . . . . even though it has no THC in it.
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Thank you @lioness for the places you can buy Wintergreen alcohol . . . .I'm sure the quantities of each ingredient is important as you pointed out. I'll check those stores out since we do have a Walgreens here. Is it wintergreen alcohol or an essential oil?
Thanks for the info about wintergreen alcohol @lioness. I’ve tried the pickle juice that you recommended before too, but I’ve never heard of wintergreen alcohol . Do you mix it yourself or buy it somewhere, and if so where? Also, I do take more magnesium now as you recommended also, and I find that does help as well. So thank you.
You’re so welcome @becsbuddy. I know what you mean about having someone who really understands what RLS is really like. I’ve learned that so many people I’ve talked to, who think they have restless legs have leg cramps or the jerking or movement that occurs with sleep apnea. While I know these are serous, uncomfortable, and interfere with sleep also, they’re not the same thing. They don’t have the need to get up and walk at night & that horrible jittery feeling that is so hard to explain. I think the best explanation I’ve come up with is that it feels like I’m shot full electricity since at it’s worst, it turns into a whole body sensation. When I’m really tired because of not sleeping I find myself impatient as those individuals share their “cures “ for what helps them…. and I feel bad since I know they are only trying to help. I think some of that feeling is because it is so miserable & we have that human need to be understood….. I should know more about CBD…. is it a tincture that you use or does it come in a pill form? When you expressed the hope that it would work tonight, I sympathize since I have found I dread bedtime, sometimes all day long
@becsbuddy: I'm always glad to connect with a fellow 'sufferer' with RLS. While I'm not aware of any new research, I think Neupro is one of the newer drugs (since it is quite expensive . . . $1,400 without insurance, but with that kind of cost, I ended up in the Gap category with the insurance company pretty quickly – now it is about $80.00, but it was $600 and then $400 per month before dropping to the current price of $80 last month; just to prepare you if you are prescribed it as well). It is considered to be in the same family of drugs as Requip, and even though the side effect of brain fog or interference with cognitive processing is not listed on the insert with the presecription, that is one of the great drawbacks of taking Neupro for me. I had trouble with remembering when I was taking high doses of Gabapentin (about 2,100 mg daily), and the doctor dialed that back to the current level of 300 mg at 4:00 p.m. to stop the RLS from starting, and then another 300 mg at 9:00 to help me fall asleep. That has worked out pretty well. With the addition of Neupro, the brain issue is that I will have a complete and utter blank sometimes about something I just said or did, where I put something, or about something that happened anywhere from last week to a few years ago. Sleeping is so beneficial I've been willing to put up with that, but it is frustrating to experience nonetheless. People will tell me things like it is part of aging, but I also know what my mind is like (and I can be forgetful at times too that's for sure) now, and how it operated before I started Neupro. My doctor understands and doesn't try to minimize that symptom by dismissing it as age related – which is a great relief. Also, I don't know if this is helpful, but I was taking Reuip for about nine years, and then it stopped working, and so I then started having to increase dosages every two weeks. After each increase and for about five-six days, I would be dizzy to the point of passing out, and I would wake up with a massive headache. The neurologist I was seeing here wanted me to just keep increasing and increasing the dosage, and that it what drove me to seek help from Rochoester. I too have an autoimmune disease, but I have not been able to take prednisone since it tends to amp up the RLS.
To answer your question about who I see for RLS, it is a Sleep Center doctor at Mayo. At my first appointment, she took me off Celexa which I was taking for depression, and put me on Wellbutrin which someone else has already observed in another post, is in a different class of drugs than the SSRIs that are often used to treat depression. She also noticed that my ferritin levels were low in my iron count, and she put me on iron supplements until it stop going up and down. That helped immensely, but I find the RLS continues to get worse as time goes by. So, I'm particularly grateful and appreciative of the Sleep Center doctor, and she is very approachable. For the first time since RLS has continued to get worse and worse, she seems to have strategies or different medications to try when something isn't working or has stopped working.
I hope all of the above helps since it is quite long. Good luck with your treatment. . . . I'm always interested in what other people are using for RLS, so if you have any insights, I'd love to hear those too.
YES! I hate them since they are so limiting in terms of what I can and can't do . . . . .. I am using Gabapentin and Neupro patches right now since after 9 years, Requip stopped working. It did a great job until suddenly I was increasing dosage every two weeks and getting nauseous, dizzy, and fainting with each increase. The Neupro patches (which are quite expensive) stopped being effective in just the past ten days, and I'm up all night walking and dealing with that horrible jittery feeling again. It sounds like an exaggeration, but for the past ten days, I've had only three hours of sleep per night. For some reason, even with the patches, the symptoms have started manifesting again at around 11:00 p.m. and last until 3:00-4:00 a.m. They abate somewhat until 6:00 or 7:00 when I wake up and can't go back to sleep. I'm thinking of asking my doctor about trying Requip again since the Neupro makes my thinking feel a bit jumbled. CBD oil isn't considered legal in SD, but I've been wondering about using it. Do you mind if I ask how you use it and where you get it? I know it is legal and a greater percentage of states all the time, and in nearby Colorado, it has been legal for some time. I hate to sound melodramatic, but I become almost frantic for sleep since it feels like so many things are awry when I don't have sufficient sleep. Thanks for your comment on my post.
I concur with the comments made by others, and as @johnhans commented, it is different from other antidepressants. I learned from my Sleep Center doctor that it is the only one that does not exacerbate my ongoing and increasingly intense issues with restless legs. I still have the restless legs, but the Wellbutrin has been working for me with my depression for about six years now. Prior to that I was taking Celexa, and it was helpful, but I still had some days that felt pretty gray to the point I thought I was on the edge of becoming depressed again. (I later learned that it could increase the intensity of RLS – and for me, it did). I was nervous about trying yet another anti-depressant, but Wellbutrin keeps me from sliding down the rabbit hole to isolation and a feeling of helplessness/hopelessness. I don't remember exactly how long it took to start being effective, but I believe that it was about ten days when I noticed that I was gradually starting to feel better. I hope this helps!