Restless Legs Syndrome (RLS) Discussion Board

My anxiety has not increased. I will continue to take 100 mg three times a day for now, as well as the magnesium.

badnights wrote:Wow. I was told to take CoQ as well, but I didn't notice that sort of effect even though I'm prone to anxiety. I may have been too messed up at the time to notice, or the dose was too low.

When I did a Google search on the side effect, I didn’t really think there’d be a connection but there it was. And my neurologist confirmed it. Unfortunately he also told me that Vitamin D3 can have the same effect.

debbluebird wrote:My anxiety has not increased. I will continue to take 100 mg three times a day for now, as well as the magnesium.

So glad for you, Deb!

I take D too.

I decided to add back gabapentin. Starting 300 mg twice a day. I was hoping it would help with the insomnia. So far it is helping. Also decided to space out the methadone more. Now taking 2.5 mg every 6 hours.

deb - I hope your adding back of the gabapentin continues to help. Was last night the first?

I have only had one night with the gabapentin. It did help this morning. Usually a spasm wakes me up when I sleep in, today no spasms. I just woke up. I did have one spasm at 6 am. I decided to have breakfast , then went back to bed. Being up after a spasm wakes me up usually works, it did. I had gone to bed at 11 pm, slept til 6 am. Then this morning for 3.5 hours. I really enjoyed the sleep. See what happens tonight.

That was a good night of sleep. It's like having a surprise gift.

Spasms hit me at 1 am, then finally after they went away, I could not go back to sleep. Slept again this morning though. I just hate being up at night. I increased gabapentin to two at night, then. See what happens tonight. I was really hoping it would take care of the insomnia and help with spasms. I stopped it before because I thought it increased my appite. Without it I am still hungry all the time, do I figured why not try again.

I am totally frustrated. Even though I have divided up my doses of the methadone, it is not letting me sleep. I am getting less and less sleep. In other words, I was getting 9 and 10 hours, with breaks in that time. Four hours at a time, or two. Now, I have been getting 7 in a row, or less, and that's it. That is what the mirapex did to me, reduce the amount of sleep in 24 hours.
This afternoon, I fell asleep for maybe15 min or less, woke up to severe spasms. I had cleaned house today. It seems, that if I do anything, I get pay backs of spasms. I got mixed up with the methadone. I took an extra half, but then later, took another half. I shouldn't have had that second half. So, I ended up taking a whole extra tablet, from what I usually take. Before that, it would not have mattered, now it gives me insomnia. So here I sit, awake. In two more hours it will be 24 hours since I slept. Expect for that 15 min.
It is getting to the point where I don't know how much longer I can take methadone. I just wish there was something else to take.
I did increase the gabapentin today. I don't think it helps much, but my thigh was burning so much, from the nerve pain, that, I decided to increase it.
I just can't stand this. It seems, that I either have severe spasms, or insomnia.
I am feeling very sad tonight, it's almost morning.
My appt. with the specialist is so far away, yet I doubt there is anything she can do.

My appt. with the specialist is so far away, yet I doubt there is anything she can do

Deb, she will try something new, something you haven't tried yet. And together, you are very likely to find a solution. No matter how you feel about it right now, there are better times ahead. If one doctor can't figure it out, you will see another who will figure it out. You're right now in the midst of something you've never done before - seeing someone who specializes in WED/RLS. The experiments to return your quality of life have just begun.

One thing you should ask for next time is much closer followups. If what she suggests doesn't work, you can't be suffering for 3-5 months before trying something else. Tell your specialist, as she must know!, with RLS/WED it's common to try 5 or more different things before you find one that works, so waiting 3-5 months between attempts is not acceptable - it would take anywhere from 1 to 2 years, all the while at your current level of suffering.

Deb, when I had my first appointment with Dr Tsai, one of the first things that I mentioned was my role here on the board. The tone of our discussion changed immediately. At the time, I had been deep into augmentation for more than six months and couldn't drive for more than about 30 minutes without pulling off to take a 10-15 minute nap. We discussed options for my treatment, almost like equals. Once we had agreed that I would start with methadone, our conversation changed to one where she started asking me about the experience of others. For example, she asked if anyone had tried Suboxone and how it was working. I don't give names, but described Eefall's experience.

Since she is also a sleep specialist and saw that I have a diagnosis of Upper Airway Restriction Syndrome (UARS), she asked if I was using a CPAP machine. The question was good because CPAP isn't always effective for UARS. When I told her that I was, she first asked me to bring in my chip (I own my own machine so I don't have a service). When she couldn't read my chip the next time, she asked if I checked my data (yes, daily), so she asked me to start bringing printouts of my report. We also usually talk about the pending research program at the school that will look at the use of marijuana for treating RLS.

Our appointments often also include discussions of the latest research and me bugging her to submit the paperwork to become a Foundation Quality Center (I think she is dragging her feet because she knows how many patients this will attract and she doesn't need the extra case load).

My point with all of this is that you are going to be seeing a doctor who is nearly on par knowledge-wise with many of the RLS experts, she is just younger than they are so she doesn't have the reputation that they do -- yet.

Ok Steve, thanks.
Beth, I have taken at least 20 drugs, I have a list, and thanks.
I am interested in the marijuana oil.
Better night last night. One bad night, can usually mess me up emotionally.

Deb, don't forget the solution may not be a medication per se. It might be another substance (mmj even), or a combination of meds and other substances and diet, or a device or procedure.

What about an implanted morphone pump, whiich would deliver such a low dose of morphine that your CNS woudln't be depressed so there would be no breathing problems? Check out Mister_Ed's Topic on this at viewtopic.php?p=83234#p83234. It begins before he got it two years ago, when he was just asking questions about it. He has had continual relief for two years now.

There are possibilities that you haven't thought of yet. That's this specialist's job, to consider those things. Why not ask her about the implanted pump?

badnights wrote:Deb, don't forget the solution may not be a medication per se. It might be another substance (mmj even), or a combination of meds and other substances and diet, or a device or procedure.

What about an implanted morphone pump, whiich would deliver such a low dose of morphine that your CNS woudln't be depressed so there would be no breathing problems? Check out Mister_Ed's Topic on this at viewtopic.php?p=83234#p83234. It begins before he got it two years ago, when he was just asking questions about it. He has had continual relief for two years now.

There are possibilities that you haven't thought of yet. That's this specialist's job, to consider those things. Why not ask her about the implanted pump?

I agree! I have - SO MANY TIMES - thought that I was at the end of my road. And, yet, I always seem to find something else.

I see movement disorder doc tomorrow in Denver.