Pramipexole and serious side effects

[ViewsAskew]

And one last point...Dr B has a few interests, but one of his is educating other doctors and institutions regarding WED. It may be worth checking to see if he has a referral or database of doctors who have been educated by him.

That is a great point. I think many are students at Stanford, but I'm sure they move on and not all stay in California. And, I know he flies to other places, too. He was in Colorado recently, if I remember correctly.

[ViewsAskew]

I have seen Dr B for the last 3 years. As soon as I augmented on requip he pulled me off. I asked him if I was taking a "holiday" and would be going back on. He said no, because the likelihood of augmentation was too high. I feel concern for you about the scenario with going off such a high dose of mirapex and then right into requip. My withdrawal process from requip was VERY uncomfortable even with opioid support. After my initial rebound, we were able to back me down onto a stable dose of opioids that allow me to have a fully functioning life, although I would say I poop less and am more generally fatigued. But not more fatigued than I would be if I were suffering with WED! Good luck to you

jy3131 has some very valid points.

jakesmom, would your doctor consider a "rethink" on this? I know you've tried other things, but you can't really count them because you were augmented at the time. Horizant, for example, has been extremely successful for many people. I honestly can't remember your ferritin level, but a transfusion is an option. I'm pretty sure you were already on gabapentin - but maybe it would work differently now.

I am probably going overboard here with concern. You've been through so much.

Will you promise me (and yourself) one thing? If you're not comfortable asking the doc or the doc says no, will you please stop the Requip the MOMENT that you have earlier, more intense, or worsened symptoms? All those hallmarks of augmentation. I spotted it on Tuesday, but wasn't absolutely sure. I took it again on Wednesday. Then I was way sure. It only took me a week and it wasn't as bad as the first time, but I had to use an awful lot of methadone and still had symptoms and only something like 3 to 5 hours sleep for a total of three or four days. I just don't want you going through that again.

[badnights]

jakesmom: ditto ditto!

[Chipmunk]

Will you promise me (and yourself) one thing? If you're not comfortable asking the doc or the doc says no, will you please stop the Requip the MOMENT that you have earlier, more intense, or worsened symptoms? All those hallmarks of augmentation. I spotted it on Tuesday, but wasn't absolutely sure. I took it again on Wednesday. Then I was way sure. It only took me a week and it wasn't as bad as the first time, but I had to use an awful lot of methadone and still had symptoms and only something like 3 to 5 hours sleep for a total of three or four days. I just don't want you going through that again.

Ditto this!

[jakesmom]

Hello all,

Your advice is once again needed. I am back on DA's, day 4 pain level is zero, however, I am wide awake at 1am for the 2nd day in a row. I haven't done this since I got off DA's. Am I crazy or is my body telling me now this isn't going to work?

Thanks

[ViewsAskew]

Seems this is relatively common for people who take DAs. Some people get sleepy, others are awake. They definitely cause sleep issues for me. Initially it was very sleepy. Over time, the other. I sleep for a short time, then am awake every few minutes all night long.

It may be related to the glutamate issue - see the Dr Allen et.al research recently published. It may be that the DAs reduce the sensations and urge to move, but the glutamate is still too high, and since it's an excitatory neurotransmitter, we're awake.

It may be that this, alone, won't work for you. You may have to have something to help you sleep. Many people do. Maybe you could ask your doctor if she's seen the glutamate study. If she hasn't, you could offer it to her and ask her if she thinks it might have anything to do with what's happening to you.

[jakesmom]

I need to get in to see her but we are 4 short at work and its highly frowned upon right now. However, we are short 4 ppl and I can't give my boss the me he has come to expect lately if I am once again only sleeping 3 hours a night. I feel like I was doing so well off of DA's as a maintenance drug.
Maybe what works for you will work for me, 2 on DA's 2 on opiates and maybe 2 on something else like gabapentin. If I don't stay on DA's I won't need oxycodone; I'm not that bad yet.

I don't know if I can sell my doctor on this plan over the phone. If I can't, I am going to have to sell it to my boss because if I don't get more than 3 hours of sleep a night and we are working 11 work days, my performance won't be good.

[ViewsAskew]

What I do is last resort - I don't think I suggest it, but if I did, it was to stress alternating the DA with something (or I was much too tired and not writing what I should have!). You still don't know how gabapentin or similar drugs will work for you without DAs. You feel your WED as pain. People who perceive WED as painful often do well on Lyrica, gapapentin, or Horizant. If I were in your shoes, I'd definitely ask to try those alone before I'd want to take a DA daily.

If you find none of these work, then that's another bridge.

[jakesmom]

Horizant was too strong. I will ask her to let me try gabapentin. What is a starter dose? Horizant knocked me on my butt. Oh and what are its weird known side affects?

[ViewsAskew]

Horizant was too strong. I will ask her to let me try gabapentin. What is a starter dose? Horizant knocked me on my butt. Oh and what are its weird known side affects?

I think you were on a cocktail of other drugs when you tried it - so the effects may be different now. That said, Horizant made me VERY tired. But, according to Dr B, that resolves in 2-3 weeks for most people and you can use something like modafinil (which is what I did when I tried it) to function during the day. I couldn't function on it without the modafinil (or armodofanil). Both of these drugs are VERY expensive, though. I had samples to get me through the trial of Horizant.

But, no need to start there if you are pretty sure it's too strong. Horizant is a pro-drug of gapapentin, so the effects are similar and it also can make people pretty sleepy. Again, most people get used to it, though of course some do not. Starting dose is up to the doctor, but usually between 100 and 300 mg, 1 to 3 times a day, increasing it every 3-5 days until symptoms are covered. Max is 900 mg 1-3 times a day. I sleep GREAT on gabapentin - love the sleep, actually, and have used it as a sleeping pill of sorts.

Like all drugs, it comes with a long list of side effects. The worst, I think, is being suicidal , which one of our moderators had while using it. But, as with all things, we're each different, so you don't know until you try. http://www.mayoclinic.com/health/drug-i ... de-effects

[veldon7]

My Neuro told me to take 100 mg of Gabapentin around dinner time and 100mg at bedtime, but I usually only take the 100 mg at bedtime and the .25 Mirapex around 5 pm. I sleep alot better with the Gabapentin. I don't sleep good without it, and I think the Requip did keep me awake. When I take too much Gabapentin I do feel tired. But 1 pill at bedtime works for sleep and the drowsiness does decrease. I hope the Requip works for you I have tried to switch from Mirapex to Requip a couple times, the Requip worked, but I had to take 1 to 2 mg to get results, it still didn't work as well as Mirapex so I ended up going back on it. It may work better for you though, since you stopped Mirapex for a while.

[badnights]

jakesmom what dose are you using of ropinirole?

Sleeping issues are very common in WED. Hypnotics are prescribed for a lot of us - mostly not benzodiazepines, these days, but the newer "Z-drugs". The common need for hypnotics is mentioned specifically in the WEDF medical bulletin and I think in Dr B's Neurotherapeutics paper, too. Those parts you could highlight for your doctor.

I simply do not sleep without one. I doze, and can doze for 8-9 hours/night, day after day - I did that for half a year, after I finally found medication that stopped the sensations and urge to move. I was eventually (after a sleep study) prescribed a hypnotic (zopiclone) which does the trick and allows me to fall into a real sleep, without too many awakenings.

So maybe just adding a z-drug to the regimen would do the trick.

If you want to get off the DA, and I wouldn't blame you, I would think you're almost a clean slate right now. All the other meds you've tried, were tried when you still had pramipexole in your system, yes? So you might want to think about giving the Horizant one more try in a "clean" body. I think it's unofficially OK to cut the patch in half;
---- Ann, didn't you try cutting them? It's not recommended, but does no harm? Or am I recalling incorrectly?

Gabapentin is absorbed very erratically, so it may not cover your symptoms systematically, and if you do get side effects, they may vary in intensity. Pregabalin might be worth a try, or one of the anticonvulsants that are used less commonly for WED.

Or see if your doc will put you on a low-potency or medium-potency opioid, in combination with an anti-convulsant, or even alone. I used a combination of codeine and gabapentin with some success for many months. However, it didn't cover off the symptoms which seemed to worsen rapidly during that 10-month period.

[jakesmom]

She gave me 1mg of Requip to take twice a day. I started at 1mg at bedtime. Did that for 3 nights and all 3 nights I didn't sleep well and woke up numerous times congested. Last night I didn't take any. I took 5 mg of oxy. No congestion and I slept like a baby

[Polar Bear]

You were off the DAs..... to start back on a dosage of 1mg x twice daily seems a lot to me.

And if the oxy works....

[jakesmom]

She upped my Lyrica to 100mg in lieu of gabapentin.