Need help finding the right meds for me

[Fly007]

After a hellish summer of weening off of Pramapexole 3.75mg been struggling to find a medication that works for me. Its like everything I try is about 80 percent effective and has horrible side effects. Just got done weening off of Citalopram and switched to Wellbutrin hoping that would help some, and it did, but not by much. Here is what I have tried:
- Gabapentin: Tried this while I was weening off of Pramapexole and going through augmentation, and it was useless. Back on it now at 300mg at dinner, and 200mg at bedtime, and I can sleep, at least it feels like I am sleeping, but I am groggy and tired all day like I hardly slept at all, and my wife says I move my legs every 10 seconds very slightly. Honestly cant tell if it is the Wellbutrin 150, the Gabapentin, or just not sleeping good that is making me tired all day.
- Horizant 300 and 600: I thought maybe it was the extended release that was making be tired all day, so switched back to Gabapentin since I have zero RLS issues during the day and really dont need extended release, but still tired all day. Either way I was still around 80-90% on that.
- Rotigotin (Neupro patch): Tried that during augmentation and withdrawal and it made me very hyper to the point I didnt sleep for 2 days so had to quit. Just tried it again to see how it was post augmentation and it gave me a horrible headache and a little short of breath.
Ferritin levels are well above 125, and take Iron and Magnesium daily along with B vitamins, D3/K2 and an array of multivitamins. My Dr. wont even consider Opiates, apparently her office has a policy that they will not prescribe them for sleep issues. Just got a referral to the Mayo Clinic sleep medicine department so hoping I hear something from them soon.

Does anyone have experience with Gabapentin making them tired all day, or Wellbutrin?

[Rustsmith]

First off, the only med that will help while you are going through withdrawal from pramipexole is an opioid. Gabapentin, Horizant and Lyrica simply aren't strong enough to help.
As for rotigatine, it is just a time release relative of pramipexole. Using it while you are trying to get off of pramipexole may lessen the symptoms some, but it just extends the time that you will be miserable.
Wellbutrin - If you were taking Citalopram for depression, Wellbutrin is a better choice for those of us with RLS although it isn't a very strong AD. If you were taking them for sleep (some doctors prescribe anti-depressants as sedatives), then neither one is all that great.
Opioids - All opioids are central nervous systems depressants that can cause you to stop breathing at night. Gabapentin, Horizant, muscle relaxants and alcohol also have this property although gabapentin and Horizant are not as strong. But don't be surprised if Mayo prescribes an opioid as these are by far the most effective meds for those of us who have been through augmentation. There is even a publication on the Mayo Clinic site that justifies the use of opioids for "refractory RLS", aka post augmentation.
Daytime sleepiness - this could very well be due to the gabapentin. I take 900mg and switched from taking it at bedtime to dinner because it was causing drowsiness during the morning.
Horizant - Horizant is a modified form of gabapentin. Gabapentin is only adsorbed by a short length of the small intestine, so you don't always get consistent dosing into the bloodstream. Horizant's modification allows it to be adsorbed throughout the intestines, so that you get more consistent dosing. Once Horizant is in the bloodstream, it loses the extra chemistry and becomes identical to gabapentin. Also, the ability to be picked up throughout the gut means that it also has a bit of a time release property that gabapentin doesn't.
As for your doctor's office policy per opioids, if Mayo prescribes them for you, be prepared to have to change doctors if you don't live in the same state as the Mayo Clinic. Prescriptions for opioids are limited to a 30 day prescription that cannot be refilled. The PCP who wrote my methadone prescriptions under the direction of my RLS neurologist/sleep doctor recently retired and it took me 3 weeks of searching during which time I was refused as a patient by the providers at 10 different clinics (including a paint management doctor). I finally found a nurse practitioner who had experience with treating recovering drug addicts and he was the first person who was comfortable enough to accept me as a client because he knew that my dose was very low and not likely to be a problem for either of us.

[badnights]

I agree with Steve, the only thing that seems to work on those of us who have augmented are opioids. Also, iron. Depending on your doctor, and your other iron numbers, you might be able to get an infusion.

Horizant 300 and 600: I thought maybe it was the extended release that was making be tired all day, so switched back to Gabapentin since I have zero RLS issues during the day and really dont need extended release, but still tired all day. Either way I was still around 80-90% on that.

Just a note on this, the benefit of Horizant over gabapentin is not a longer half-life (5-6 hr for Horizant, 5-7 hr gabapentin), it’s that Horizant is absorbed more fully and predictably whereas absorption of gabapentin is erratic and incomplete - as Steve has explained better. Horizant turns into gabapentin once it’s inside us.

My Dr. wont even consider Opiates, apparently her office has a policy that they will not prescribe them for sleep issues. Just got a referral to the Mayo Clinic sleep medicine department so hoping I hear something from them soon.

Mayo will be good, but I imagine you’ll be keeping your regular doctor So you’ll need to explain to her that you do not need sleeping medication. You need medication that will reduce the sensory abnormalities in your limbs – the creepy crawly horrid sensations that can be called pain. She needs to understand that opioids in WED/RLS treat a form of pain. People with WED/RLS actually have less endorphins (natural opiates made by our bodies) than normal people (they studied this in autopsied brains).

You might also want to print off this publication, & read it if you can find the time and maybe highlight the parts you find most relevant to you, but mostly, give it to your doctor. It’s the consensus of a bunch of doctors on how to use opioids in RLS: https://www.mayoclinicproceedings.org/a ... %2930825-X

I am groggy and tired all day like I hardly slept at all, and my wife says I move my legs every 10 seconds very slightly. Honestly cant tell if it is the Wellbutrin 150, the Gabapentin, or just not sleeping good that is making me tired all day.

When I was taking gabapentin, it \dulled the horrible sensations but didn’t stop the urge to move, so I could lie still in bed, maybe even sleep, but I had to kick-kick-kick constantly, little kicks. I was always tired those days, like you I don’t know why, but I suspect I just wasn’t getting restorative sleep.

[Fly007]

Thank you BadNights and RustSmith for the responses.

Unfortunately since the Dr. I am currently seeing won't prescribe Opioids I had to experience withdrawal from years of Pramapexole 3.75 the hard way because you are correct, Gabapentin and Horizant do absolutely NOTHING for that. There were nights I seriously thought I was going to lose my mind, and a couple nights I ended up in the ER, which was a huge waste because they basically look at you like a junkie withdrawing from Heroin, tell you they cant do anything and send you home.

When I was taking gabapentin, it \dulled the horrible sensations but didn’t stop the urge to move, so I could lie still in bed, maybe even sleep, but I had to kick-kick-kick constantly, little kicks. I was always tired those days, like you I don’t know why, but I suspect I just wasn’t getting restorative sleep.

I think you are spot on, my wife checks on me periodically (we have to sleep in separate beds thanks to all of this) and she said I still move my legs every 10 seconds. I think the Gabapentin and now low dose Lorazipam take away the sensation of the movements and the pain/crawling feelings so that I am asleep, but still tired all day because my body doesn't really rest.

You might also want to print off this publication, & read it if you can find the time and maybe highlight the parts you find most relevant to you, but mostly, give it to your doctor. It’s the consensus of a bunch of doctors on how to use opioids in RLS: https://www.mayoclinicproceedings.org/a ... %2930825-X

Gave the Dr a copy of that, that's when I was told their office has a policy of not prescribing Opioids and that there was nothing she could do.

Looks like Mayo cant get me in until late December, but at least its a start, nothing else I can do anyway.....

[Rustsmith]

If you do not live in MN or a neighboring state, start preparing now by finding a doctor that would be willing to write opioid prescriptions for you. There is a high likelihood that Mayo will put you on an opioid and you will need to get that prescription refilled 30 days later. The doctors at Mayo cannot wrote prescriptions for residents of other states. It took me three weeks to find a doctor to write them when my PCP retired. I was getting very nervous and I still had a bit of longer grace period than 30 days. It would be horrible for you to find that opioids are the miracle that many of us found them to be, only to lose that relief after 30 days, not to mention having to go through yet another medication withdrawal, albeit not as bad as DA withdrawal.

[Fly007]

Rustsmith,

If you do not live in MN or a neighboring state...

I live in Northern Wisconsin, about 3.5 hours from Mayo in Rochester, MN. I am about an hour and a half from Duluth, which is where I go to see my current sleep Dr, hoping that if Mayo decides that is best they can point me to a provider.