death is the answer?

[badnights]

you're right, it has a 6 hr half-life compared to 2-3 for Ambien. I originally asked for Ambien but can't get it in Canada. I love the zopiclone tho, as long as I'm not having bad RLS, which just rips the sh.t out of the zopiclone. But otherwise, it sends me through the night with no after-effects other than a slightly metallic taste in my mouth. Small price to pay. I never take it more than 3 nights in a row, though. Just in case.

[D4]

Sometimes I think the most difficult thing to convey to a doctor is the extent to which we are suffering. ...

I really related to this statement. I brought my husband to my 3rd appointment with my neurologist. (He had never gone with me to any kind of doctor appt before.) At the time, I was sleeping up to 18 hours a day but never had an ounce of energy. It took my husband an hour to wake me up twice a day. I felt like I was in a coma. Just living was exhausting. I was not suffering from depression.

Anyway, I wanted my husband there to help explain to the doctor what I was like at home so the doctor wouldn't think I was exaggerating and so my husband wouldn't think I was nuts. It worked out very well. My doctor said he'd never seen a patient with problems as severe as mine. (I had already gone through most of the RLS drugs with my previous doctor and the neurologist had a short list of next drugs to try and I had quickly exhausted that list with my body being unable to tolerate any of the drugs.)

My doctor was very concerned and said he needed to refer me to Mayo Clinic and ordered a brain MRI for the following day. I appreciated him recognizing so quickly that my problems were out of his league. It took 3 months before I could get seen at Mayo, but at last I got there.

The Mayo neurologist diagnosed me with a very rare sleep disorder in addition to the RLS and PLMD that I knew about. He was able to get my RLS and PLMD under control, but there is no medical treatment for the rare disorder that is much worse than the others. It is doubtful that I would have ever gotten diagnosed with that if I hadn't gone to a world expert. When I returned to my local neurologist after the Mayo appointment, he was amazed because he'd never even heard of that disorder.

I have improved somewhat over time because I refuse to give up. I do a lot of research on my own (because this is so rare that no one else will) and I've spent a small fortune trying things that might help me. I have found many things that have each made a small difference which added up to big improvements. I still go to Mayo once a year and my Mayo doctor is thrilled that I've found non-drug things that have helped me. I'm always looking for more improvements because I'd like more quality of life improvements.

Sorry I rambled, but this post reminded me of my experience. Good luck Beth.

[SquirmingSusan]

You know what's really amazing is that I brought my husband with a couple times to the local sleep clinic. I have literally been going from doctor to doctor for 30 years trying to find out why I'm so tired all the time. And they just didn't listen! I I've had cataplexy for over 15 years, and they just didn't listen to that either. So I figured it was just some strange thing about having RLS that was making me so exhausted.

Until October when I flew out to see Dr. Buchfuhrer. And he diagnosed me with narcolepsy, which, now that I've been reading a lot about it and participating on discussion boards with other people who have narcolepsy, should have been obvious to a lot of doctors along the way. Actually I did see on doctor in Minneapolis who is a neurologist and a sleep specialist. He mentioned narcolepsy as if it was no big deal in relation to my RLS.

But the other local doctors? Because on the day of my nap study I couldn't sleep a wink, they didn't listen to 30 years of history, or my husband who was there to tell them that I had been sleeping 15-20 hours a day for year. Turns out I was taking Effexor at the time, and it turned me into a total insomniac. I had to quit taking it because I couldn't sleep, ever.

Nothing beats a doctor who listens, cares, and works with you. It's great when a primary care doctor can be that doctor, but when they don't get it there are other doctors who do. I'm so glad I flew out to LA last fall.

[badnights]

Why is listening so hard for them? Or is it talking that's so hard for us? I think a lot of women, anyway, have a deep-seated politeness and an addiction to understatement, which don't serve us well in our 10-15 minutes with a doctor. How ingeneous of both of you to bring your husbands. To educate both doctor and husband. I don't have one of those things anymore otherwise I might have tried bringing him too.

The lesson is clearly to never give up, to keep looking for new ways of coping and to keep fighting for good medical attention - going the extra mile or thousand if necessary. The investment seems to be work it.

I just saw my family doc today,. she gave me permission to double up the Percoct and stay on the smallest dose of pramipexole; she *still* hasn't got in contact with the neuro because he was travelling all last week. Probably visiting the communities up north. I want her to tell him how I'm coping (by adding drugs on my own!), how horrible it was to w/draw from the gabapentin (I dont; want him to do that to anybody else!) and suggest to him that I move down there for amonth if that's what it takes to get him to work with me closely., At least my family doc's full on board now, she even asked about RLS specialists today! She knows what I need. Maybe if she wrote a referral properly I could get my flight down south (or out east) by insurance. (probably not)

D4 what is your disorder? (If you don't mind telling) I have become interested in sleep disorders and the devastation of sleep deprivation lately (for some reason ) and I'm curious about yours.

I also have a section in book of papers on sleep and movement disorders, on issues surroundinng the efficacy of the MSLT -Susan if youi're still dealing with the clinic it might be useful, or just to feel vindicated.

I am also not sleeping tonight. Again. Will come I think . Thanks for the good wishes D4; me you too.

[Polar Bear]

Excellent that your family doctor is working along this path with you. It makes such a difference when doc is willing and cooperative.

[ViewsAskew]

Beth, a spouse/partner isn't the only option. Any family member or friend whose been witness to what you go through and how it's affected you is an option. Sounds like you don't need that. GOOD!

If doctors had any idea of how often we self-medicate, that alone would make them take us seriously. Most of us don't want to take any medication, yet we're borrowing from those in our lives, buying things from pharmacies in other countries, etc. Craziness that any of us should have to do that.

Per the listening, I highly recommend Jerome Groupman's book called "What Doctors Think." Fascinating.

[D4]

You know what's really amazing is that I brought my husband with a couple times to the local sleep clinic. I have literally been going from doctor to doctor for 30 years trying to find out why I'm so tired all the time. And they just didn't listen! I I've had cataplexy for over 15 years, and they just didn't listen to that either. So I figured it was just some strange thing about having RLS that was making me so exhausted....

I can relate to this. My Mayo neurologist agreed that I'd probably had the sleep disorder for 25 years which was how long I had been telling my doctors about my extreme fatigue. All I ever heard from those doctors was "every working mom that comes in here is tired." They would never even listen to me describe my abnormal debilitating fatigue.

[D4]

...D4 what is your disorder? (If you don't mind telling) I have become interested in sleep disorders and the devastation of sleep deprivation lately (for some reason ) and I'm curious about yours...

My disorder is that my brain doesn't process sleep correctly. I can sleep 14-18 hours and never get a second of restorative sleep. (I've had 2 sleep studies that have shown that - one locally and one a year later at Mayo.) It's crazy because it's as if I'm in a coma and nothing can wake me.

Through everything I've tried, I have improved somewhat. My Mayo neurologist was very happy for me when I told him the things I'd done that had contributed to my improvements. (He knew I was in danger of losing my job if I couldn't resume full work hours soon.) I asked if I could have another sleep study to compare now vs a couple years ago, but he said no because I have obviously improved. I'm very analytical and I love data, so I really wanted to see the comparison. But I realize that they have a limited number of sleep study patients they can handle, so those spots should go to people that need them (like I did when I first went there.) I had hoped he might want it for his own learning about my rare disorder. Unfortunately if you have something really rare, you're on your own because researchers and companies invest money and time on things that can help a large number of people.

Susan: I also had a MSLT a few years ago and unlike you all I have to do is lay down and I'm asleep within a couple minutes so the sleep study recorded all that. I fall asleep sitting up too, if I'm not focusing on something. In fact, in my MSLT I fell well within the times for narcolepsy but my Mayo doctor is sure I don't have that because I don't have cataplexy and other key parts of narcolepsy.

[SquirmingSusan]

Interesting, D4. It sounds a lot like narcolepsy, with the nonrestorative sleep. About 30 percent of people who are diagnosed with narcolepsy don't have cataplexy. I don't have a lot of sleep paralysis, thankfully or hallucinations. When I close my eyes, though, it's a whole different story. It's like watching movies that are made from separate slides. Colorful image after colorful image flashing through my brain. Which is weird, because I couldn't intentionally visualize even a simple object like a ball, if my life depended on it. But I do have cataplexy and average between 15-20 on the Epworth Sleepiness scale, which should have been a giveaway to any competent sleep doctor.

It really aggravates me that I've spent so many years of my life going from doctor to doctor and not getting answers. And yes, I've heard the thing about all mothers are tired too many times.

Since your sleep issue is caused by non restorative sleep, I wonder if Xyrem could help you. It consolidates sleep and makes it restorative. Dr. B is really pushing me toward that, but it's a $2500/month med and I worry that my husband would lose his job over having to keep us on his insurance. And then what if all 3 of us need it, which is likely? Hopefully Xyrem will be approved to treat fibro soon, and then it won't be an orphan drug used to treat a rare condition. You might want to ask about it, though.

I have the Zeo too, and since switching off Effexor all I have to do is close my eyes for it to read me as asleep, either light sleep or REM. Sometimes it shows me asleep when I'm just sitting quietly and feeling sleepy. I may be. I'm sure I could "pass" the MSLT diagnosis test for narcolepsy, but Dr. B wants to find out if a clinical diagnosis is enough for me to get on Xyrem, since the MSLT isn't all that reliable.

[SquirmingSusan]

I also have a section in book of papers on sleep and movement disorders, on issues surroundinng the efficacy of the MSLT -Susan if youi're still dealing with the clinic it might be useful, or just to feel vindicated.

I found some of that data, Beth. It's like the doctors would rather take an "objective" test result that's not very accurate over listening to their patients. Dr. B's diagnosis is based on my description of my symptoms - daytime sleepiness, cataplexy (weakness or paralysis with strong emotion, laughter is a trigger for almost all people with narcolepsy), fatigue, insomnia, etc. He says that's how they diagnosed narcolepsy in the days before MSLTs. He didn't change my diagnosis when my MSLT came back negative because he believes me when I tell him that most days I can't keep from sleeping. I didn't even need to bring anyone else to back me up on that.

I guess the point is that a doctor who listens will listen to YOU, and you shouldn't need people to back up what you say. It's good you got your doctor to listen. Now just keep pressing for better symptom control...

[D4]

Interesting, D4. It sounds a lot like narcolepsy, with the nonrestorative sleep. About 30 percent of people who are diagnosed with narcolepsy don't have cataplexy. I don't have a lot of sleep paralysis, thankfully or hallucinations. When I close my eyes, though, it's a whole different story. It's like watching movies that are made from separate slides. Colorful image after colorful image flashing through my brain. Which is weird, because I couldn't intentionally visualize even a simple object like a ball, if my life depended on it. But I do have cataplexy and average between 15-20 on the Epworth Sleepiness scale, which should have been a giveaway to any competent sleep doctor.

It really aggravates me that I've spent so many years of my life going from doctor to doctor and not getting answers. And yes, I've heard the thing about all mothers are tired too many times.

Since your sleep issue is caused by non restorative sleep, I wonder if Xyrem could help you. It consolidates sleep and makes it restorative. Dr. B is really pushing me toward that, but it's a $2500/month med and I worry that my husband would lose his job over having to keep us on his insurance. And then what if all 3 of us need it, which is likely? Hopefully Xyrem will be approved to treat fibro soon, and then it won't be an orphan drug used to treat a rare condition. You might want to ask about it, though.

I have the Zeo too, and since switching off Effexor all I have to do is close my eyes for it to read me as asleep, either light sleep or REM. Sometimes it shows me asleep when I'm just sitting quietly and feeling sleepy. I may be. I'm sure I could "pass" the MSLT diagnosis test for narcolepsy, but Dr. B wants to find out if a clinical diagnosis is enough for me to get on Xyrem, since the MSLT isn't all that reliable.

I'll do a little research and then ask my doctor about Zyrem. But my big problem with drugs is my body can't handle most of them. I have a bad story that goes with every RLS drug, sleep drug, and stimulant I've tried. When my Mayo doctor had me trying stimulants, 1/8 of the smallest dose available threw my body into a tailspin and sent me to the ER with a racing heart. At least my Mayo doctor understands that I can't tolerate drugs like other people can. Vicodin is the only thing we've found that helps my RLS and PLMD. (The one exception is Requip which made me feel the best I'd felt in 25+ years for a couple months until I augmented horribly.)

It sort of makes sense though. I tried drinking caffeine pop when I was in college. It made me shake horribly and have to lay down in misery in my bed. It took me a few days before I figured out what was causing that. So little kids can drink caffeine pop but I can't. The only thing I drink is water - 24/7.

I can't test the Zeo like you described. If I lay down and close my eyes, I'm asleep in my coma like state.

[D4]

OK, I just read a bit about Xyrem and it's not for myultra-sensitive body. It's got GHB in it which is the date rape drug. I'm sure it will be helpful to some people and that's why they are letting it be sold as an orphan drug, but I remember what 100 mg of Neurontin did to me. It was as if I had been sedated for surgery.

Thanks for the suggestion. I'm always looking for more ideas, usually non-drug ideas because of all the bad experiences.

[badnights]

D4, that's absolutely nuts. How fantastic that you've been able to find things that help when the doctors have so little information to go on. I wonder if you could advertise for a graduate student to study you.... someone would have to supply the funding though. Gee. Just sparks in my brain.

[badnights]

I played hockey tonight for the first time in 1.5 weeks, and even though I was weak as a kitten, it felt good to be out doing something. Now I'm in here posting instead of out in the kitchen making something to eat. maybe that's why I keep losing weight and feel weak - I keep delaying when I have to eat.

Tonight I will try to sleep without the pramipexole because taking it before hockey might have slowed me down and now it's too late and would make me too stupid tomorrow. If that doesn't work I guess I have to try it before hockey. Maybe I'll hear from the neuro before I have to worry about the next game. lol.

[badnights]

well, that didn't work.