Need Feedback on Mirapex

[yawny]

I've used Mirapex (generic) probably three times since I was diagnosed with RLS last year. In the beginning I was desperate for sleep so even though my sleep doctor ignored my low ferritin and said there was no such thing as augmentation, I took Mirapex for two nights. It did nothing but I was also extremely anxious that my ferritin levels were too low so I stopped. I then found medical marijuana to be very helpful and have been using that for six months. Problem is that by federal law we can't take MM across state lines and I realized that my aging parents may need me to travel to their different state to help them at some point. Being available to help them is very important to me and not being able to travel to them causes me anxiety. So I've experimented with Xanax and Lunesta and found that they are good sleep solutions but not long term since my dosage tolerance increases quickly. My ferritin is now in the 80s so I decided to try Mirapex again just last night. I took .25 mg two hours before bedtime. At bedtime, I ate my usual MM edible which usually kicks in about two hours and helps me get past middle of the night insomnia. As soon as I laid down I felt incredibly nauseous and had my husband get me a trash can just in case I vomited. And then as I drifted off to sleep, all my usual PLMS appeared in my fingers, wrists, shoulders, abdomen, facial movements. I hoped it would stop at some point but it went on all night. The strange part was feeling like my fight or flight response had been activated. I didn't feel anxious but my brain felt agitated. For those who have used Mirapex, is this a normal reaction? If I continue the Mirapex, will it start working at some point and stop the PLMS? Thank you for any feedback.

[stjohnh]

No, that is not the usual reaction to mirapex. The usual starting dose is 0.125 milligrams and the nausea could be from starting at a higher dose. However, mirapex usually works well starting with the first dose. It is possible that you need a higher dose than .25 milligrams, but you should work up gradually to that dose. The reason to work up slowly is not because it takes a while for the medication to work, but it does take awhile for your body to get used to the side effects.

Medical marijuana usually provides relief for only mild rls leg jumping, so if you are getting good relief just from the medical marijuana, that is already somewhat of an unusual situation. Lots of people find medical marijuana helps them, especially for the sleeping problems, but it is rare to have complete relief from medical marijuana by itself.

[ViewsAskew]

My reaction was not identical to yours, but very disturbing. I was advised to not try using .25, as Holland noted, for an initial dose. Dr. B suggested (this was 12 years ago) to take at most .125 and likely (if I as sensitive and I appeared to be) to try only .0625 (one quarter of a .25 mg). This helped me tremendously.

When I first started taking it at the higher dose, I couldn't even have a sip of alcohol or I would vomit. I had strange, crazy lucid dreaming that was very freaky. I had tremors in my hands that scared me. And so on.

If you were to try again, I'd try cutting it in a quarter, then just nibbling a bit of it. I do it all the time - just shave a bit off with my teeth. If you don't have relief in an hour or so, nibble a bit more. If 1/4 isn't enough, you can try a bit more next time.

Also, since MM works, kratom might. It's legal in all but 4 US states, so you might feel more comfortable traveling with it.

[yawny]

Thanks Holland & Ann (you two are superheroes on this forum)...

I'm thinking medication (Mirapex) that requires any ramping up may not be a good option for travel. But I may have no choice. Also, what does it mean that the Mirapex didn't help? Is there a difference between brand name and generic? Should I be thinking this medication will never work for me at acceptable doses (no more than .25mg)? I know this is a big question, but if Mirapex didn't stop the PLMS, does that mean it's not RLS but some other condition?

I'm not sure the severity level of my RLS. I've not had an overnight sleep test in a lab, just an at-home test. I am scheduled to see my first neurologist and a new sleep specialist in the next few months. Hopefully I can get an overnight lab test.

With medical marijuana, I don't have relief of symptoms but I am able to sleep through them. I can tell they are there all night and when medication hasn't worked I've been able to sleepily observe my symptoms continuously throughout the night. But I have noticed a huge improvement in my sleep when I started using CBN marijuana. When I initially used high THC flower from the dispensary, it didn't help my sleep. I then tried high THC with high CBD and I had better sleep. But then I started making my own CBN by just aging the high THC flower in my sunny windowsill and sleep got a lot better.

[stjohnh]

I don't really have an answer for why the mirapex didn't seem to help, but I'm not sure you really gave it a fair trial either. I'm glad you're seeing a different specialist, your prior specialist that didn't know augmentation occurred suggests he or she really didn't have the training that is necessary to treat restless leg syndrome. Your symptoms are a little odd as well, so perhaps that's not what you have at all. As Ann suggested, perhaps Kratom is a good way to go, at least temporarily until you can get to a further evaluation.

Sleep studies are rarely needed to diagnose RLS, but you may have an unusual situation. Generally very few tests are needed to diagnose RLS, it is primarily a diagnosis made by history and examination. Certainly a ferritin is done, but usually that's about it.

If you are still seeing your current specialist, it may help to take a couple of the white papers that are on the Restless Legs Syndrome Foundation site and give them to that doctor.