Grateful for this Forum (continued) - Restless Legs Syn...

Restless Legs Syndrome

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Grateful for this Forum (continued)

Restlesssinger profile image
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Other info I've learned on this forum, for which I'm grateful:

I refused a prescription for a dopamine agonist and tossed out a prescription for Wellbutrin after what I've read on here about augmentation AND other research, which suggested that Wellbutrin can increase insomnia---the very last thing this RLS sufferer needs more of.

I've refused prescriptions for Gabapentin because of the side effects mentioned on this site AND for nortryptilan because of the serotonin tie-in with RLS.

I'm tapering off sertraline (aka zoloft) after 24 years (!) because of the serotonin tie-in with RLS. This is a long, slow process. Currently I'm taking 50 mg. 1 day, 50 mg. the next day, then 37-1/2 mg. the third day, then repeat. I've been doing this for 3+ months now. Next step is to go down to 50 mg. one day, followed by two days of 37-1/2 mg. for another few months. Eventually I'll be down to 37-1/2 mg. every day, then I'll go down to 25 mg. one day out of three. If this sounds bizarre to anyone, you haven't been on an antidepressant for 24 years! :-)

I briefly tried taking L-Trytophan at bedtime but (perhaps because of the serotonin connection?) it worsened the RLS symptoms. Amazon was kind enough to refund my money. Same with a sleep remedy which contained melatonin, among other ingredients. It was on this site, I believe, that I learned that melatonin and antihistamines (such as benadryl) are not good sleep aids for RLS sufferers.

I have a prescription for medical cannabis due to another painful health problem of mine -- occipital and trigeminal neuralgia. I discovered that concoctions with higher amounts of THC actually increase my physical discomfort because all my awareness goes to what hurts and it becomes excruciating. (I might be unusual in this regard.) THC also tends to increase the anxiety I feel, which isn't conducive to sleep! Concoctions with mostly CBD do help to reduce flare-ups of the occipital and trigeminal neuralgia, but do not seem to help much with the RLS. Big sigh.

I have come to terms with needing to take 1/2 to 1 hydrocodone tablet per night in order to avoid the RLS symptoms. This has not been an easy coming-to-terms process for a recovering alcoholic (8-1/2 years), especially in light of the (well-deserved) bad press that prescription opiates have been getting the past several years. As long as I can keep the dose low, and only at bedtime, I will be grateful for the relief I obtain.

Recently on this site I read about a drug which combines oxycodone with naloxone. Anyone else care to share their experiences with this, and whether it's preferable to taking hydrocodone or just oxycodone by itself?

Thank you, everyone, for sharing your experiences on this forum. So helpful!

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Restlesssinger
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Parminter profile image
Parminter

Opioids were the drugs of choice for RLS for hundreds of years before Big Pharma stepped in with their problematic prescriptions. You have been very wise to refuse the latter and accept the former.

I have no experience of oxycodone/naloxone (but people on this site do), but I do have experience with methadone, which I consider to be close to miraculous, with far fewer downsides than the current RLS drugs.

Beckonwood profile image
Beckonwood

I find that oxycodone is the only medication that helps with my RLS. I am now 76 and have been suffering from RLS for years and have gone through all the medications prescribed for movement disorders and have found that oxycodone is the best. I take the lowest dose and cut the pills in have and take two pills every night. I keep a small notebook in which I jot down the date and times I take the pills because I don't want to forget and take too many. I have a doctor who is willing to work with me and gives me prescriptions that take me through four months and writes on the prescription not to be filled until a certain date. We who suffer from RLS are in a group all our own. Its a terrible thing to have to deal with and I find it rules my night life a lot.

Hi Restlessinger. I have learned a great deal here too. For me the thing I am most grateful for was the advice on Gabapentin and others like Mirapex. Originally they wanted to prescribe the Mirapex, but because of this site I knew better. So, thank you all for saving me from the nightmares that would come with that. I just other treatments and take Clonidine Hcl and it works just fine..

Merster profile image
Merster

I have used that combination of ocy and noloxone I believe called Targin. It helps yes but not a cure.the no one nixes the side effects of the percocet so constipation and stomach upset is minimalized. Still not a cure. I have had this effing condition for 2 yrs now and at times thought about suicide if I was going to have to live with this thing

I have gone from 4mg Requip to half a mg but I also have a couple of hoots on a Cbd-Thc equal mix Canadian pot. Thank our government for leagalizing it because it does help with a lot of pain related issues. So now I am almost totally Rls free except for about half hour of leg pain going to sleep. Once the pot kicks in I am good for most of the night. So thankfully considering where I was not long ago. Good luck!

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