John Hopkins Glutamate Study

[ViewsAskew]

I think my heart was racing when I read your post - my eyes were wide open! Thank you for doing it, for sharing about it, and for letting us know that there is always an end in sight.

[skn0412]

eeeekkkkkkk peeps ....... no rest for the weary !!!! My legs started partying this afternoon and I'm thinking they want to pull another all-nighter !!! I spoke to Tiana today at JH, she said this might happen. Good thing I got some sleep last night ....

[ViewsAskew]

Can't be fun, Sue. I think I was reacting to it so viscerally since I am likely going to go off all drugs when I get the infusion. I see Dr B in early March - I'll firm it then. The idea of going what you're going through just fills me with dread - but, you're still here, so I'll live .

[Rustsmith]

Sorry to hear that the symptoms are coming back so strong. You cannot be looking forward to the airplane flight to Baltimore. Fortunately, it is a relatively "short" flight for you.

[skn0412]

Well, today is Day Six (well might as well be day 7, its almost midnight !!) of being off my medicine ..... sleep is over rated !!! I made it through the worst of it and I'm okay!!! I am averaging two to three hours sleep a night, the severity of my WED/RLS symptoms have subsided tremendously but I find sleep to be difficult still. I get in bed and half hour or so the legs want to dance and the arms want to fly !! Took a nice nap of two hours today, and naps do help for sure....especially around noon-ish when I can hope that I can stay still. My anxiety level is definitely heightened but I attribute that to lack of sleep, and I was on Clonopin for eight years, plus I have cut caffeine out completely (no caffeine during the Study). Now I am closely watching the weather as they are predicting an ice/snow storm here in South Carolina for Tuesday, which is the day I leave for Baltimore .... ugggg !!!! Well, I have concluded that if in fact we are going to get dumped, I am leaving Monday for Baltimore; I WILL NOT miss this appointment with Dr. Earley, and I will not miss this opportunity to participate in the Study, and if I have trouble getting out of here.......then all this was for naught or will be delayed, which means a longer period of no meds....eeeeekkk !!!! Stay tuned......

So I guess while I am up I will investigate airline flights for Monday just in case. Thank you all for your support and well wishes .... I am so grateful to have a place to go to read and talk to folks that are having the same struggles.

Hugs!!!!

[ViewsAskew]

It sounds crazy to be happy over a few hours of sleep and a nap....but that really is good news. I always am amazed at how many of us did, do, or have done this for years and we live. Not saying I want that to happen to you! Just that it's amazing what we can do when we need to.

Here's hoping that more sleep to come, sooner rather than later.

[badnights]

Can the folks at Johns give you a letter for the airline, so you will be allowed to stand and move as much as possible during the flight?

[Polar Bear]

My WED Foundation Membership Card proved useful in getting suitable aisle seating near the toilets/galley where there is a bit of space to use when necessary.

[doety]

I add my thanks and profound gratitude to you. Even though I think my daughter will soon have it fullblown, I can't make myself go through that. I've talked to the folks at JH and they are truly wonderful,...when I've talked by phone they always take as much time as I need.

I took almost a year to get off Klonopin--tiny bit by bit. And even after giving it all that time, I went into a month-long depression. I was seeing a therapist and she remembers that I said "I guess this is what it feels like to be old." I'm normally very upbeat and optimistic, and my therapist and I finally figure out my problem was getting off Klonopine.

I spent a lot of time trying to get off Methadone -- finally these doctors convinced me it would be easier if I got on Suboxone. Oh Lord. I titrated down to just a dot of it; when I finally went cold turkey, I got no sleep for 9 days. Obviously my feet hurt, so I would crawl around my house or roll around on the floor. That was the worst.
Then my task was to get off Mirapex -- this is one drug where I think we decided you might as well go cold turkey and I did. Nasty, nasty. I was affected for a couple of months.
But I'm still on drugs now -- I just rotate different things.
I know we all have our different solutions...I think my best is listening to songs on my I-pod. Sometimes I lay on my stomach and work on my computer. For a few nights, I was able to "over-ride" the WED by buying favorite tunes off I-Tunes, that was a year ago.
And I'm sure none of these work for anyone else.
We -- your biggest fans -- will anxiously await your report (and while you're there could you tell the nice folks that we need for them to hurry!!)

[Rustsmith]

Sue, I hope you decided to leave on Monday like you said and are already in Baltimore. The weather prediction for tomorrow for your area looks really bad.

Good luck with the studies and I hope your contribution speeds their work along to the conclusion that we all need.

[Joanie60]

Ditto from me! I am from the Baltimore area, currently in Charlotte, NC taking care of my mom. Watching the storm for two locations!! What a mess we may have on our hands on the East Coast. Please let us know, Sue, when you are safely in Baltimore. Hugs!

[EeFall]

I spent a lot of time trying to get off Methadone -- finally these doctors convinced me it would be easier if I got on Suboxone. Oh Lord. I titrated down to just a dot of it; when I finally went cold turkey, I got no sleep for 9 days. Obviously my feet hurt, so I would crawl around my house or roll around on the floor. That was the worst.

Wow, someone else who knows what it is like to have bruised feet from pacing day and night. I went through getting off methadone, mirapex, and Lyrica this summer and now I have just gotten off Lyrica and methadone once again and I am now on Suboxone.

Did Suboxone actually work for you? I have never heard of anyone else taking it. I started on 1 mg for 9 days, then 2 mg for a week and now I am taking 4 mg a day for the last week or so. The doc said it could take up to 14 days to work completely. I am still getting very little sleep but I am not getting the terrible mood swings and depression that I had from Lyrica and methadone. It is working some because I am not pacing all the time. Are you taking other meds besides Suboxone for WED? Or were you even using Suboxone for RLS or was it to just get off of methadone? Thanks.

[doety]

I took the Suboxone to get off Methadone. You know, everything works pretty well at first and the Methadone did work. Then I realized I was falling asleep in the car, even when I was talking to someone. My daughter told me she couldn't leave me with my grandson -- and I don't blame her. It was amazing to me that there is nobody I could find to help me get off it. The stupid doctor who first prescribed it to me said: You're at the end of the road. You need to take Methadone." When I asked how to stop, he said "just cut it in half tonight, then don't take anymore." I talked to a good reporter at our newspaper who covered drugs, addiction, and asked him what he thought I should do. He told me that when he was doing stories, he would ask the doctors, etc. how a person could get off these drugs. He said nobody would talk about it. Of course, you know that Suboxone is an Opiate. And no, I don't take it anymore. I didn't expect it to help RLS, but it actually did. I finally decided to get off it because of the pressure I kept getting from them. They wanted me to pee in a cup every time I went; they wanted to count my pills and wouldn't give me more than 30 days worth. They wanted me to join a counseling group. I was ready to kill someone -- I am NOT a drug addict; I just have WED and cannot sleep without help. They did give me enough so I could taper off. I was only taking 2 mg -- and I think you're probably taking too much. I found a wonderful neurologist who helped me through the awful 9 days. He would call me to see how I was. Finally he called the doctors who had prescribed the Suboxone and asked them what he could give me to help me sleep. They said: "Suboxone is a 'sticky' drug. Nothing will touch it until it gets out of her system." Bet they didn't tell you that....? My doc said he would prescribe anything I wanted if I thought it would help. I even tried oxycotin -- which sent me into overdrive -- I wasn't just walking, I would lay on the bed and my legs would "bicycle." That finally stopped after about 15 hours. I hate this Merry-Go-Round and I wish you so much luck in finding something that works. (I think I was taking Mirapex when I took the Suboxone).

[EeFall]

The methadone and Lyrica was my end-of-the-line drugs. Johns Hopkins got me off of pramipexole, methadone, and Lyrica in about a month of reducing the strength of meds and then 10 days of nothing at all. This was to reset my system. Then they started me on methadone again thinking that would be all I would need and at less strength.

I had to increase the methadone though and then my RLS was under control but it made me hyper so I couldn't sleep. They had to add the Lyrica back so that it would make me sleepy. All seemed well until I realized it was turning me into a raving lunatic and I guess I was also becoming depressed. It is like turning into Mr Hyde from Dr Jekyll but this was the real deal.

Now the doctor has tried Suboxone only. I have been on medical leave for a month going through withdrawals getting off of methadone and Lyrica. Then I started Suboxone at 1/2 dose, then full dose, and now 2 times dose over several days. The doc may raise it again soon. My sleep over the last few days has been going up from zero to 1/2 hour, to 1 hour, etc. until last night I had 4-1/2 hours sleep on the couch (in two sessions). I also have severe sleep apnea and require the use of a VPAP machine or the sleep is pretty worthless.

The problem is now that I can't get to bed, very difficult, like with methadone it is making me hyper and whatever it is that makes one want to go to sleep, I don't have it. Also over the last two weeks once I do go to bed, like at midnight, I am likely to wake up within an hour or so from RLS symptoms and the sleep is over until the next night. I am hoping that the sleep will be better for when I have to go back to work Friday, but either way I am going to work. My wife is going to drop me off and pick me up everyday if I get less than 4 hours sleep a night.

She is doing this because during the summer I did fall asleep at the wheel a 1/2 block from our house and fortunately I woke up driving in a vacant lot although it cost over $5000.00 in insurance to repair the car and the electrical box on the property that I ran over. That is never going to happen again, it is bad enough to have to live with this disease but if I ever injured someone I would never get over that.

So I am now living with WED beyond the end-of-the-line hopefully Suboxone will begin to work better soon, After 14 years of severe RLS & sleep apnea I am pretty much spent. Maybe I will just have to live without sleep and hope that a place like Johns Hopkins comes up with a real cure eventually.

[QyX]

The problem is now that I can't get to bed, very difficult, like with methadone it is making me hyper and whatever it is that makes one want to go to sleep, I don't have it.

This is the problem I had with every opioid I was trying so far, except Morphine. Morphine was sedating in the first weeks and sleeping became very easy but I developed a tolerance to this specific effect.

For years I don't have the thing that makes one want to go to sleep. Normally I never feel tired. I feel more like stressed and emotionally exhausted but I can't fall asleep because my brain just doesn't stop thinking.

But this has changed a bit now because I take Abilify and Seroquel for sleep initiation.

From what I know Methadone and Burprenorphine are the two opioids who activate the most.

I don't know how any1 can work with so less sleep like you. When I don't sleep enough I loose all my energy and motivation. I get weak and lie in bed all day because I am so exhausted but sleep doesn't come! My legs don't move because of the Morphine but falling asleep is something completely different.

From what I can see here in general is that opioids alone often don't solve the problem. Many WED/RLS symptoms may go away but falling asleep stays a big problem and I my opinion is that this issue needs more attention by the Docs and the scientific literature.