Just Joined - My Thoughts and Questions

[rthom]

That is truely great news. Good luck with it Bryan.

[ViewsAskew]

hi all, just thought I'd post a follow up from my appt today. I feel very good as my main goal was accomplished -- I think I found a professional who actually knows about this disease. He seemed like he had some good experience, knew a good amount about RLS, and didnt feed me BS. He also didnt tell me he could cure me. Thats what I was looking for. So I feel very good. No mention of a sleep study. And he knew all about augmentation. And....best of all....he listened!!!! He wasnt trying to rush me out of there, in fact asked me to sit back down a few times.

PolarBear - reading your attachment while in the waiting room was an awesome prep.

So, based on what he heard, he suggested we try supplementing my Ropinerole with "Gabapentin enacarbil" which I've heard about on the forum here and on your attachment. The plan is simple, try that for a few days and see what the effect is. If it works, maybe we bring down the Ropinerole doage gradually, get me off of it for a time being, then bring me back with a small dose to supplement it. I told him I dont lke the idea of being on multiple meds so we talked about maybe only using the Gabapentin if we're lucky.

But the good news is I have someone, close by, who I can work with to figure this out. Not looking for a quick fix, one stop shop visit, in and out.

Fingers crossed. Took my first dose a few mins ago (say start at 5pm) and will know in less than 12 hours if it worked!

Bryan

All good news!

One thing to consider....people often find that they get more complete relief with small amounts of 2-3 things than larger doses of one thing. They also often have fewer side effects. I never wanted to be on ONE medication, let alone multiple ones, but I over time I've learned that I Definitely find that I do better with the multiple approach.

In a way, in makes sense. None of these medications have been developed specifically for WED. They all happen to work for some reason or another, but aren't targeted to WED. So, they might help some components, but not others. Mixing them allows a more complete treatment.

[bryher]

All good news!
One thing to consider....people often find that they get more complete relief with small amounts of 2-3 things than larger doses of one thing. They also often have fewer side effects. I never wanted to be on ONE medication, let alone multiple ones, but I over time I've learned that I Definitely find that I do better with the multiple approach.

In a way, in makes sense. None of these medications have been developed specifically for WED. They all happen to work for some reason or another, but aren't targeted to WED. So, they might help some components, but not others. Mixing them allows a more complete treatment.

Ann, I couldnt have said it any better. I started thinking about it last night and this morning, and you put it perfectly. I honestly never thought about it that way but I really believe that. Makes me feel better. So maybe what I'll wind up doing is a dose of Gab with a small dose of Requip.

And..the good news is that I think it worked like a charm! It wasn't lke the first few nights of a new dosage of Requip but so much better. And to be honest, we all know how many other things besides WED contribute to a truly perfect night's sleep. I've very excited and looking forward to a streak of the same over the next week.

I also forgot to mention my Dr was very open to research on my own and online support from this forum. He encouraged it.

I'm going on a week's vacation starting Sunday (cruise to Bermuda!) so it will be a perfect test run with this new combo.

More later!

[ViewsAskew]

How nice to be leaving just when you've had a nice breakthrough in treatment.

And what a great doctor!

[Polar Bear]

Bryher, I hope to had a great night's sleep and can look forward to your cruise.

[badnights]

Likely you're gone already, but have a great cruise!

[charles]

Recently joined also. The discussion board should be required reading for all physicians , or at least the physicians who have been exposed to WED patients.
Anyone from Pinellas, or Hillsborough County , FLA area ?

[ViewsAskew]

Boy, I really wish physicians would come and read our posts!

Welcome aboard, charles.

[bryher]

Bryher, I hope to had a great night's sleep and can look forward to your cruise.

Thanks Polar Bear!

[bryher]

Likely you're gone already, but have a great cruise!

Beth, I had just left! And boy was it a great trip!

I did well sleeping-wise and decided not to change my dosage during the trip. I stuck with the Gabapentin and two seperate doses (1.5mg) of requip. Worked well except twice with alcohol. We drank wine for dinner each night of the trip, and had no problems except twice. Wow, I wasnt expecting it either. Each night I'd take 1.5mg of requip around 9:00ish. We'd usually still be eating dinner then. By 10pm, both times, I felt like I was in a tranz. I didnt realize it at the time other than I thought I needed to go to sleep right there on the table! never have i had such a hard time staying awake. Didnt make for a good dinner partner.

Anyway had a great time and now back figuring out my next step (see below).

[bryher]

Recently joined also. The discussion board should be required reading for all physicians , or at least the physicians who have been exposed to WED patients.
Anyone from Pinellas, or Hillsborough County , FLA area ?

Welcome Charles! Yes, I completely agree. I'll tell you, at least the doctor's I've spoken with have been open and encouraged support online (sometimes they steer people away for normal issues). But I think they realize how little they know.

I'll tell you, once I get in my grove and start to figure this out, I am going to meet with my primary and review everything. She's very open to things and I'm sure she will be with that idea.

[bryher]

Ok, so I'm at a point where I need to make an important decision. My last (and also first) meeting with the Sleep Specialist (mentioned earlier) the plan was to get me started on the Gabapentin and slowly take me off of the Requip (if possible). Then, once off the requip, bring me back on but at a very small dosage. I'm currently taking two 1.5mg doses of Requip, one at 9:30pm and another around 1:30am.

So, the last two nights I dropped the requip to 0.75mg each dose (total of 1.5 down from total of 3.0). Well, each night I wasnt able to fall asleep Still, I'm moving on to decide what to do next.

First, I'm now pretty positive I've augmented with the dopamine agent (requip).

My next step will be:
1) stay at two 1.5 doses of requip b/c I know it works. This isnt what I want to do.

2) keep dropping the dosage as planned. Now if I do that, I'm thinking why wait and drop it slowly? I already know the first drop doesnt allow me to sleep. So if I go this route, why not go all out and drop the requip completely. And see if I can deal with it for a short period of time. If I've augmented, I think that means after a few weeks, or a month, my increased symptoms "may" go back to their original level?

I'm thinking of trying to cope for maybe a month straight, see if my symptoms revert back, and then just staying on just the Gabapentin and/or adding a small dose or Requip.

Thoughts?

[badnights]

I wouldn't advise committing to this and to working full-time also. If you're serious about it, leave yourself the option to take leave if it gets bad.

Yes, you can expect it to reduce to a lower baseline level over 1 to 4 weeks.

I don't remember the beginnings of this thread; what you really need when coming off a DA after augmenting is an opioid, at least for the duration of the wihtdrawal. Some people have no problem but they're in the minority. It's cruel and unusual punishment if an opioid is not prescribed when there is a problem.
See viewtopic.php?f=4&t=7980&hilit=augmentation
Scroll to my post of Mon Jun 04, 2012 11:14 pm ; read it and gte the download

[jy13131]

Definitely will need an opioid.

[badnights]

Don't ask for one. Tell your doctor exactly what's happening in your body, provide him with the medical bulletin highlighting the relevant parts, and let him suggest it. Otherwise he may think you're telling him how to do his job, or that you're a "drug-seeker".
(and the PDF excerpt at viewtopic.php?f=4&t=7980&hilit=augmentation
Scroll to my post of Mon Jun 04, 2012 11:14 pm ; read it and get the download )