NOTHING is working

[peanut1]

I think I have tried all the meds out there and NOTHING is working!!! I doubled the dose of lunesta with Vicodin last night and got a grand total of 4 hours of sleep. I only do the meds a few times a week since I acclimate to them so quickly. Methodone makes me hyper at night and I don't get any sleep, gabapentin does not work anymore, neither does the clonazepam. I augment on all the DAs so that is not an option. I have 6 different meds I rotate and it seems like I've acclimated to all of them. I already acclimated to 4 of the newer ones within a 3 month period and that's only taking them 2-3 times a week!!!!!! At this point, I'm not sure what to do. I started combining some of the meds and still had no luck but I did get chewed out by the nurse today. I'm seeing a very reputable sleep neurologist who told me that I know what's going on more than he does. I have tried it all: diet, exercise, more calcium, magnesium, naturopath, acupuncture, meditation-honestly I don't know what else to do!!!!!!!!!!!!!!!!!!!!!!!

[peanut1]

Have appointment with sleep neuro tomorrow. If that does not work, I'm thinking about going to Houston to see Dr. Ondo.

[QyX]

What about other opioids?

I take Morphin long acting pills, three times per day, 24/7 ... my dose is stable at around 80 mg.

This is my baseline medication.

Sleeping was still difficulty but my leg movement and pain was completely gone.

I was taking DAs and Benzodiazepines like Clonazepam here and now but I augmented and got addicted to Benzodiazepines.

Then I discovered Carbamazepine.

When I was new on Morphine I was able to only sleep on Morphine because it has some sedative, hypnotic properties.

Other opioids couldn't do that for me.

Many people get hyper on Methadone and there are reports about getting hyper on Oxycodone and Hydromorphone, too but not really on Morhpine.

I think Morphine is still the best opiod around. Hydromorphone has the advantage that it doesn't interact with the CYP450-Enzyme system and is causing less opstipation.

Big Morhpine disadvantage is its mutagenic potential but when you don't plan to get pregnant, then it not an issue. Also Morhpine is much cheaper then Oxycodone or Hydromorphone.

[peanut1]

Qyx,

I'll write these meds down and discuss them with the doctor. I just need something to get me through the night and I like the morphine idea.

[ViewsAskew]

I vote for Dr Ondo. There are many other opioids, as QxY noted, but each of us responds differently.

If you can afford it, I highly recommend buying book: Clinical Management of Restless Legs Syndrome, Edition 2 - by Lee, Buchfuhrer, Allen and Hening. It lists every drug known to work. It's so helpful to me to go through it alone and then again with my doctor when I'm searching for options.

[peanut1]

Thanks Ann,

I'll give this doctor ONE more try tomorrow and then I'm scheduling an appointment with Dr. Ondo. This is the reason why I've been so worried about taking meds--that I would completely run out of all options and there would be NO options left. Thankfully, there are some more meds I can try. Also, Ann i've read your response to another posts about doctors not giving us drug holidays which I wholeheartedly agree with. In the early days when this WED went severe, I would get on med then increase it as the doc prescribed and it would always not work after a while and then doc would increase until I had to get off it and I was beside myself. If he had told me to only take the drug part time or for a certain amount of time and rotate the med, then I might still be using gabapentin today.

[Polar Bear]

I echo Views suggestion to get the book and use it for discussion with GP.
And also the comment to familiarise yourself with the content. I label mine, mark sections with 'post-its'. Mark paragraphs using pencil.

Something to bear in mind - when we fear running out of options for meds, there is still the possibility of using 2 or more meds as a cocktail.
It works (more or less) for me - not a lot of sleep but the WED symptoms are pretty much controlled.

[ViewsAskew]

Thanks Ann,

I'll give this doctor ONE more try tomorrow and then I'm scheduling an appointment with Dr. Ondo. This is the reason why I've been so worried about taking meds--that I would completely run out of all options and there would be NO options left. Thankfully, there are some more meds I can try. Also, Ann i've read your response to another posts about doctors not giving us drug holidays which I wholeheartedly agree with. In the early days when this WED went severe, I would get on med then increase it as the doc prescribed and it would always not work after a while and then doc would increase until I had to get off it and I was beside myself. If he had told me to only take the drug part time or for a certain amount of time and rotate the med, then I might still be using gabapentin today.

I feel the same - I really wish doctors would read our forum!

For me, I have been able to circle back at times, so sometimes things still will work later, but not always. And, you usually go through hell to figure it out.

[EeFall]

If you haven't already, try some marijuana (unless it is going to get you into trouble). It doesn't necessarily take a lot to work. There are whole Internet sites about what kind to take for "pain", and RLS is a type of pain for sure. If it doesn't help you sleep, at least it will keep your mind off of not sleeping.

Have you tried kratom? It also works for some with RLS and there is a lot of info on Internet about it too. Legal in many countries including the USA, at least the last time I looked

If that doesn't work try combining the two.

Also I would recommend either baking marijuana brownies or buying a vaporizer so it doesn't muck up your lungs. Some people have kratom tea, but I just put it in capsules and take it. Some eat the kratom powder but it is yucky tasting.

[sleepdancer2]

I have just today returned to this board after a long absence, so I apologize in advance for not being familiar with your whole story. In general I'd like to toss a few thoughts out there to take or leave as appropriate for your situation.

#1 Have you been tested for sleep apnea, both obstructive and central? Some who try desperately to sleep fail if sleep apnea is present and not treated or inadequately treated. Some of the meds you've mentioned are known to increase risk of central sleep apnea. Has that possibility been ruled out?

#2 What is your experience using a TENS Unit to help calm your legs? I have used one for over 3 years and while it is not always 100% effective, it has given me far more relief than any of the meds I used for over 10 years - without side effects. My diagnosis is RLS/WED and PLMD. I use my TENS on my lower back as is prescribed for lower back pain. Tried using it with the electrodes on my legs but it made them dramatically worse.