Just Starting

[crl363]

I have mentioned a little bit of my condition on other posts. I have created this new post because I have just started to be treated by a neurologist. I am already in need help and will probably need more as my treatment continues. I would appreciate any help alone the way. Just a quick background again. I have had RLS for 10 years with no neurologist. I am on 10mg/day ropinirole by self medicating over the years. I just had my appointment and she has put me on Horizant (600mg). I started off with a headache last night. This morning I am in kind of a fog with very slight blurred vision. Are these symptoms normal? Do I need to drop the dose? As always any help would be appreciated.

Bob

[Polar Bear]

There are others who are better on the medications than me, but just to clarify.
We know that 10mg ropinerole daily is way too much - Are you still taking the 10mg ropinerole as well as the 600mg Horizant, or is the Horizant replacing the ropinerole?

I googled Horizant and blurred vision is listed as a side effect.
http://www.webmd.com/drugs/drug-155818- ... izant+Oral

There are members who use or have had experience of Horizant and hopefully you will hear from one of them soon.
In the meantime if you do a search for Horizant you will find posts but unfortunately it means working your way through them.

[ViewsAskew]

I have mentioned a little bit of my condition on other posts. I have created this new post because I have just started to be treated by a neurologist. I am already in need help and will probably need more as my treatment continues. I would appreciate any help alone the way. Just a quick background again. I have had RLS for 10 years with no neurologist. I am on 10mg/day ropinirole by self medicating over the years. I just had my appointment and she has put me on Horizant (600mg). I started off with a headache last night. This morning I am in kind of a fog with very slight blurred vision. Are these symptoms normal? Do I need to drop the dose? As always any help would be appreciated.

Bob

Bob, we wish you luck.

I think I've already said I think it's important stop the ropinerole at that dose. You'll never know what "normal" WED/RLS is for you until you do and medications aren't going to necessarily help you as you want because you're artificially augmented. We don't know what taking such a high dose of ropinerole does to our bodies or if there are lasting effects. I do not think you will be able to use Horizant to reduce the ropinerole - the symptoms of stopping ropinerole may be very severe. I'm not sure how you're using the Horizant, though - as a replacement for the ropinerole or to help with extra symptoms.

Horizant typically makes people foggy/sleepy/groggy for the first 10-20 days. You are starting at the lowest available dose, I think. I slept about 12-14 hours every day for 3 weeks when I took it. I stopped it because it didn't work for me and I was up to 1800 mg a day.

How long did the blurred vision last? I don't know if it's a common side effect and nothing to worry about or not - did you check it out on Horizant's website or another similar site?

I just went to see the side effect profile - blurred vision is common and not something to report to your doctor . http://www.drugs.com/sfx/horizant-side-effects.html

[crl363]

I am taking Horizant along with the ropinirole. I have started to augment on ropinirole (upped my dose twice in the last 2 month)s. The doctor is hoping that it will reduce my dose of ropinirole. The headache was the worst of the symptoms. It took well over 24hrs to get rid of it. Waiting on ferritin and sleep study results before I see her again. I take the advice from the members here more than the doctors. Collectively there sure is a lot of knowledge and experience here. I know I need to get on opioids to get off of the ropinirole and that is my goal in the next appointment. At some point down the road I will probably be on gabapentin+opioids. I don’t do well with meds and I needed to see how I would do on Horizant. I have stopped taking it knowing it probably won’t help now but knowing what it does to me may help down the road. I may have to break the pills in half and build up along the way to ease the symptoms when the time comes. Not even sure if that’s the right thing to do. I need advice and like I said there sure is a lot of knowledge here.

[ViewsAskew]

You're in a tough place.

This is my tough love response. According to the WED experts and our collective experience, there is no way to stop augmentation except the opioids. I don't know if you will figure out anything by trying the Horizant while augmented. As you noted, my guess is that you will have to find that out after. Anything you do now is colored by the augmentation.

And. as Robert Frost once wrote, the only way out is through. Good luck getting the opioids that you need to get through. Cold turkey is very hard, takes longer, and is really difficult. And, so far, the doctors have not found anyway to get through augmentation except the opioids. If you're sensitive to them, it could be tough going.

Per being sensitive, we hear that a LOT around here. I don't know if we all are, or the people here are just the tough cases and have these things in common. It makes it really hard - we just do the best we can and hope we can make our lives work with what we have.

[crl363]

I was wondering about opioids. When I get put on them what is the dose I should be put on? I know I can handle Percocet 5:325 from previous surgery. Is that to low? Does it need to be titrated? Do I need the acetaminophen part (I not in any pain)? Am I allowed to drive with them in my system? How do I approach this with my doctor?

[QyX]

I was wondering about opioids. When I get put on them what is the dose I should be put on? I know I can handle Percocet 5:325 from previous surgery. Is that to low? Does it need to be titrated? Do I need the acetaminophen part (I not in any pain)? Am I allowed to drive with them in my system? How do I approach this with my doctor?

When an opioid is added you normally start at a very low dose.

For me opioids help the best but they come with various side effects like activation or depression/fatigue who need careful management.

I take Hydromorphone. Before I was on Oxycodone and Tramadol.

[Chipmunk]

I was wondering about opioids. When I get put on them what is the dose I should be put on? I know I can handle Percocet 5:325 from previous surgery. Is that too low? Does it need to be titrated? Do I need the acetaminophen part (I not in any pain)? Am I allowed to drive with them in my system? How do I approach this with my doctor?

You could share the RLS Bulletin with your doctor where it says that opiods are a common treatment option for people with RLS/WED. If you end up taking them regularly, even for a couple months, try to get a version that doesn't have acetaminophen in it to avoid taxing your liver. But don't be surprised if you can't get it like that - they like to leave it in there because then if you start taking too much, you will present with liver failure and they will know you are abusing your painkillers, if that makes any sense.

[crl363]

Thanks everyone for all your help!! It is greatly appreciated.

[badnights]

Bob, I am late chiming in here but I do think, if you can afford it, and if you can get it fast enough, it would be worthwhile to grab a copy of the third edition of Lee, Buchfuhrer, Allen and Hening (the little blue book, which used to be the little green book, in the 2nd edition; called Clinical Management of Restless Legs Syndrome). Show the neuro the definition of augmentation on p. 176, but mainly the recommendations for how to treat severe augmentation on p. 182-183. I would actually GIVE her the book, because she is not going to be able to absorb it properly during the appointment.

Alternatively, and maybe even better, go to the second link below my signature, and then click the link to the paper by Dr B. Print the whole thing, highlight the parts where he says DAs might have to be re-considered as treatments of choice for RLS, and where he says how to treat augmentation.

When you see your neuro, tell her you have no desire to go through the hell of untreated symptoms, let alone the hell of symptoms that are even worse than your current untreated ones would be. And that's what's going to happen when you withdraw from a DA. "So how can we avoid that? Do you think this is a good idea? This guy is an expert and he gives a summary of how to do it here.." And show her the publication(s).

You could be a guinea pig for her to learn on, and relay how horrible it is to her, so that she, also, has personal experience with treating a patient withdrawing from DAs - or she could just learn from the experiences of others and save you the grief. Unfortunately, she might not react well if you put it that way. Approaching the issue is always a problem because of the fear of seeming like a drug-seeker. It should help to have medical publications in hand, that you can leave with her. I really don't think gabapentin is going to cut it (and the little blue book agrees on p.183), no matter how high of a dose you take; and like Ann said, taking it while you're still taking the ropinirole is likely to have little to no beneficial effect.

I would like to provide you with a good reference that illustrates why 10 mg is a ridiculous and dangerously high dose, but all I can come up with right now is the little blue book, "many RLS experts think that lower doses may be safer in the long run (see the discussion of augmentation, below). Therefore, it may be prudent to not exceed 0.25 mg" in reference to pramipexole on p.162, and "using this drug more than once daily should be done with caution as the resultant higher dose levels increase the chances of side effects (especially augmentation)." also referring to pramipexole on p. 162-3, and "The FDA-approved dose is 4 mg but as discussed above for pramipexole, not exceeding 1 mg per day may reduce the odds of side effects...Similar to pramipexole, [using it] two or three times per day ... should be done with caution" for ropinirole on p.164

[crl363]

Thanks Beth. I was able to get Dr. Buchfuhrer’s book. I did bring up some of the things you have recommended prior to your post but I didn’t bring the book with me. Probably should have but I’m not sure it would have helped. Her only response to opioids was “different doctors treat differently”, I told her Horizant didn’t work (gave me massive headaches) and she hasn’t put me on anything else. Don’t see her again for 6 weeks. Already am trying to get a new neurologist. The new one is on the list of members for the International RLS Study Group in 2006 that Ann posted. I am hoping she is more willing but I will take your advice to try and work her if she isn’t. Thanks again for the help.
Bob

[badnights]

Gee, I hope something changes. Either the doctor or her attitude.

[ViewsAskew]

Thanks Beth. I was able to get Dr. Buchfuhrer’s book. I did bring up some of the things you have recommended prior to your post but I didn’t bring the book with me. Probably should have but I’m not sure it would have helped. Her only response to opioids was “different doctors treat differently”, I told her Horizant didn’t work (gave me massive headaches) and she hasn’t put me on anything else. Don’t see her again for 6 weeks. Already am trying to get a new neurologist. The new one is on the list of members for the International RLS Study Group in 2006 that Ann posted. I am hoping she is more willing but I will take your advice to try and work her if she isn’t. Thanks again for the help.
Bob

Wow. I will never understand people. Clearly, I'm incapable. (I feel a rant rising....)

I mean, seriously - there is SCIENCE and RESEARCH - and NO DOCTOR should EVER substitute personal feelings, desires, wishes, hopes, or anything else. Period. If I were Empress of the World, things would be different, yes they would!

I hope that the doctor gets it. I know one of our patients saw someone one that list and the result wasn't what she was hoping for, but the chances of a doctor "getting" it have to be higher than randomly poking at a name on a list.

[badnights]

Bob, I am not sure I understood. You are going to try to see a new neuro from the list? the old neuro is not on the list?

[badnights]

Wow. I will never understand people. Clearly, I'm incapable. (I feel a rant rising....)

I mean, seriously - there is SCIENCE and RESEARCH - and NO DOCTOR should EVER substitute personal feelings, desires, wishes, hopes, or anything else. Period. If I were Empress of the World, things would be different, yes they would!

lol I looked at my post and thought it was way too apathetic and laisse-faire. You have covered that off nicely!