First Post & Augmenting

[Mountain Woman]

I have been reading this forum for a long time, and find all the information invaluable, but now I am in a mess. I am augmenting on Mirapex, and can't find anything to help. I take hydrocodone,triazalam,and just quit alprazolam.I also take various vitamins and hormones, and cholesteral meds. I have a blood disorder, and am anemic, but my iron level is fine. I have tried gabapentin, Lyrica, and clonazapam,they didn't work and made me really dopie.I have augemnted on Requip quite a while ago. My Gp is willing to work with me, but we don't know what direction to go. I have applied for a medical marijuana card but it takes 4 to 5 mo. I don't know if that will help or not, but willing to try anything. I have an app with a new Nerologist at the end of the month, but I want help now.I am depressed and desperate any advice?

[Betty/WV]

I sympatize with you Mountain Woman. You probably have seen the MayoClinic Algorythm mentioned on this site. You need to copy it, one for you and one for your doctor. If your doctor will prescribe them for you an opiate will work. Many doctors don't like to give them to you. But you will see in the MayoClinic Agorythm opiates are suggested by these experts in the field of RLS.

Something else I would suggest is to get Dr. Buchfuhrer's book, "Restless Legs Syndrome, Coping With Your Sleepless Nights". It is invaluable for RLSers. Everything you want to know. If anyone is an expert on RLS it is Dr. B., he has a sleep clinic in Downey Calif., and has been on the board of the RLS Foundation.

I know you will hear from others who are more educated in RLS than I am. So hang in there. Help is on the way. You are at the right place. They have helped me so much.

Let us know how you are doing.

BETTY/WV

[Mountain Woman]

Thanks Betty for your encouragement. I think I have figured out what has made me so disorented, nauseated, and goofy. When I decided to try the Clonazepam for 4 days, I didn't want to be on 3 Benzo's, so I quit alprazolam cold turkey, I have been on it 30 yrs.Then I took Gabepentin, and was way out of it! Last night I googled withdrawal from Xanax and was SHOCKED. I had a sleep Dr tell me once that I could never go off of it, and he just laughed, now I know why. Not very smart.I resumed the Xanax. So for now I think I will just deal with the augmentation, and take the hydrocodone, till I can get into the Dr. or get the MJ card.

[ViewsAskew]

Augmentation can be horrible. Nothing much you can do until you see the doctor unless you can be really strong and deal with the increased symptoms when you stop the Mirapex. I know I couldn't! But some have.

Me, I needed something really strong to get through it, wimp that I am, lol. I tried for about 6 months on my own and couldn't ever completely stop for longer than 3-5 days before I'd cave.

Try to get to the doctor sooner than later...a few of us have had difficulties when we stayed augmented for an extended period.

[badnights]

I ditto what Ann said - get off the drug that's making you augment ASAP, and if you have to wait for an appt, don't give in to any temptation to raise the dose of the augmentation-causing drug meantime. I think augmenting can end up having a permanent, or at least long-term, worsening effect.

There are other opiods to try besides what you've tried. Ann posted me an encouraging list of them a while back:

The list of opioids to try is pretty long...so, unless they've had you try:
methadone
oxycodone - regular
oxycodone - sustained release
hydromorphone
levorphanol
morphine
oxymorphone - regular
oxymorphone - extended release
and
fentanyl,

you are not on the last thing to try!

Beside, there is also the option of using multiple medications.

Maybe there's something in there that won't cause a bad reaction.

If you use marijuana, get Sativa varieties, not Indica. Indica (the "body-stone" kind) actually makes RLS worse. I have no idea scientifically why this might be so, but anecdotal evidence convinces me of it (I saw this one other place on the web, plus I experienced it myself, plus my son, who has mild RLS, experienced it). Sativa can calm the RLS if it's not too bad, but my experience with it is that it's not potent enough and it doesn't last long enough.

Just keep on trying to find something that works, and eventually you will. Don't forget to tell the doctors who try to help you how much you appreciate them

[Mountain Woman]

Thanks for all the help. I have got things to settle down, first I quit trying to medicate myself, and stopped trying the gabapenten, and the Klonipin(sp?) and went back on the alprazolam, hydrocodone, and triazolam. That was an awful week. I am still on the Mirapex, and no augmenting lately, but I know that it is going to start again soon. I have an appointment next week with a new Neurologist. We will see. Thanks for the advice on the marajuana, I know nothing about it, I have never even seen it. How long does the effects last? and can you take it during the day and still function?

[badnights]

I am atypical in that a normal dose of the stuff makes me either throw up or fall asleep. I have generally avoided it in during my life and I would never take it during the day, because if I took enough to soften the RLS, it would make me so sick I would have to lie down and sleep to avoid throwing up.

I have recently tried marijuana tincture for RLS, in very cautiously tiny amounts, with uncertain results. I think I am not taking enough to really help the RLS because I am afraid of the nausea and the "high", which I don't enjoy. But it seems to help me fall asleep, which I have trouble with even when the RLS is not overtly acting up.

It only lasts about 3 hours, though I imagine everyone is different.

You're probably better off with the hydrocodone, but I'm still very curious about the medicinal potential of marijuana. It hasn't been tested with RLS but is used successfully with MS, spinal cord disease, epilepsy, and some forms of arthritis. And of course, pain in cancer patients.

[Neco]

I am several other forum members can personally attest to the efficacy of M.J when smoked.

[badnights]

zach, next time you try it, can you pay attention to the variety of bud you're using? Or maybe you already have? I found Indica-dominant varieties actually made my RLS go nuts, pure Sativa varieties stopped it. I'd like to know if others notice this difference.

[Neco]

I have no idea what kind of variety it was.. Got it by chance from my brothers friend.

But yeah it did stop it, or at least damped it down a lot.. though I just went to bed after a few hits.

[badnights]

probably Sativa. My son (god help me I wish it wasn't so) has used it frequently, and since he has a bit of RLS, he is quite clear on the Indica/Sativa difference. I have not nearly so much evidence myself. Anyway - I'd rather my hydromorphone, it works.

[Neco]

Pretty sure I'd prefer the hydromorphone too But I've got Methadone and it works well enough, that I can't complain. Seeing as I'm lucky to get it

[badnights]

ya. Lucky for sure. I don't know what your solution will be if your dad can't help you in future, but at least you will have all these years of successful treatment to point to, to illustrate that, yes, a solution is possible!

Mt Woman, sorry to be chatting up your thread :/

[Mountain Woman]

Definitely not a problem, I am very intersted in what kind of mj to get. I have my first appointment with a new Neuro tomorrow, and hoping for the best but ... Things are still quiet on the legs, but you know it is going to change any day. My Gp said that it would have been ok to be taking 3 differant Benzo's a day, and I could interchange the alprazolam with the clonazopam with no problems. I don't know what my problem was then. It is spooky to be taking that amount of those, because what if I can't get it and have to go through withdrawal.. Why can't these things be easier?!

[ViewsAskew]

Why can't these things be easier?!

The number of times I've asked that is astronomical!