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I saw my Neuro for the 2nd time. He has taken me off effexor XR and replaced it with 50 mg Endep to be taken at night. He has also increased the Cabaser to 2mg at night instead of 1 mg in the morning, even though my legs have been good, but I'm only getting about 4 hours sleep a night, and I have to stop taking 30 mg baclofen.
I asked about Mirapex and he'd never heard of it, wasn't in the OZ MIMS book either. I then mentioned Wellburin (Zyban) and was told that was only used to give up smoking and sometimes as an antidepressant.
I asked him about pain killers and was told the Endep should take away the pain. I don't have another appointment until December, so I'm on my own with all these new drugs.
I'd like to hear what you all think about my cocktail of drugs:-
I'm not sure if you have a neuro that is up to date on RLS. I live in Europe, but I think he should have heard of Mirapex. About Endep and Klonopin I can't tell you from experience, but I do know that Cabergoline should be increased with 0.5mg very slowly, so pls take that into account. When I upped it too quickly myself I had horrible side-effects and I had to taper down and start all over again.
Don't know if with upping it you will sleep better. Personally I think not, but you can try. If your legs are calm with Cabergoline, it is a shame to up it, because you should not up a med when it is working and you have still a whole life before you with RLS (LOL), so you'd better safe the upping for later days.
Pls, this is only my personal opinion. Hope others will answer your post too.
Thanks for your advice Cornelia. He says that by taking the Endep, Cabagoline and Clonazapam at night, it's sure to make me have a good nights sleep. I took the diary I'd been keeping and he couldn't be bothered to look at it
I think I might have to make a 2 hour trip to find a decent Neuro. BTW: I put the first post in the wrong forum, I'm not a newbie. Must be the brain fog lol!!
mafs I take zyban but your doctor is wrong on the use being for rls I was given it for smoking but my neuro said it will also be good with the rls as zyban has a dopamin agent too which seems to be a cause for primary rls. Sounds to me like you need to go to the southern califoria web site and print off some material to have your doctor read. Maybe he will be more supportive of your suggestions.
Sorry to be off the radar for so long ... have been up in Cairns and now desperately working my butt off to catch up on my work ... gotta luv tax time!!!
Just remember though, you are not alone! We are all here for you any time of day or night.
I'm a little surprised at the change to Endep as it is a tricyclic anti-d ... but then again, like me, it may actually help you not hinder you. I did find that it helped me get back into a more "human" sleep pattern.
As you know I was on Cabergoline for a fair while and found that it really worked. I now use it as my "drug holiday" drug when the Symmetrel decides it's had enough. I too was increased in 1mg steps instead of 0.5mg steps.
You don't necessarily have to take all three at the same time. For instance if you are finding that you are becoming uncomfortable during the early afternoon/evening, there's nothing in the rule book that say that you can't take the Cabergoline at that time and the Endep and Clonazepam before bed. Remember that Cabergoline has the longest half-life so if you need to take it earlier in the day/evening it shouldn't affect how you get to sleep with the assistance of the other two.
All in all, considering what you told me on the phone the other week, you should be ok on this "cocktail". It can sometimes take a few days for your body to adjust to the new dosages and drugs, so try to be patient (yes, i know its hard!).
IMHO the Aussies have gone rather quiet about RLS which is a shame. This time last year it was all bells n whistles about ropinirole but now we seem to have slipped back into the medical research oblivion. The neuro i'm under is supposed to be one of the top three RLS researchers in Oz, but considering i've only managed to get to talk to him once in 12 months i'm beginning to wonder.
I think its just as hard here in Oz as it is in the States or any other country to find a Neuro (or even a GP) who is knowledgeable or willing to learn about RLS. Unfortunately a lot of us are "on our own" when it comes to this. I am fortunate that my GateKeeper (GP) has stuck by me and really listened to what i've said and read all the info i've been able to get my hands on. Considering i've been under three different neuro's in the past two and a half years, my GP is also a little miffed at why noone seems to want to take this seriously.
Take it one step at a time, on day at a time and most of all, Stay Positive!! You can get through this Gayl. I will give you a call in the next couple of days to see how you're doing.
Take care of you girl!
Luv n hugs
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
So much for the new meds making me sleep better!!!My body was tense all last night, I couldn't seem to relax. Today my head has been spinning and my body all tinglely and I'm so tired. Yesterday I was like a zombie, today a bit more "with it".
I was thinking of cutting the cabergoline back to 1 mg as it was helping my legs at that strenght and I have that back up in case I need the extra 1 mg later. I'm not sure that this Neuro know enough about RLS and FM. I'm considering going to my GP on Monday if I still feel like this and also asks what he thinks about the med changes. Take care Gayl
As I said before: I think it a good idea to go back to 1mg Cabaser, because it helped your legs fine. If you have to up later: better do it by 0.25mg (cut the pill in half) very slowly. If you cut down to 1 mg now you have to take into consideration that you might have more trouble for a few days. At least, that was my experience.
I was having withdrawals, but from the Clofen. The Neuro told me to stop taking them, not wean myself off them! I went to my GP and he also agreed that I was withdrawing from the Clofen and suggested I take 1x10mg tablet at night instead of the 3x10 mg tablets that I had been taking. He also suggested I cut the Cabaser back to 1mg from 2mg.
My cocktail now is:-
Morning - 1mg Cabaser
Night - 10mg Clofen 50mg Endep 1mg Clonazapam
I have been on this for 6 days now and I'm feeling a lot better. My legs are behaving themselves but I'm still only getting about 4 hours straight sleep, but good sleep and I do nod off and on until I get up. So far so good, I will keep you updated. BTW - I think I'll stick to my GP from now on, I have more faith in him than the Neuro. Take care Gayl
