Finally!!!!! some medication!!!!

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Momo
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Finally!!!!! some medication!!!!

Post by Momo »

as some of you know, i have been trying to get a doctor to say that i have rls and to do something about it

well i finally have

last thursday (a week ago) i went to my new neurologist for the first time and he diagnosed me 'officially' with rls and has agreed to find a medication that will work

he didn't want to put me on like requip and stuff like that quite yet because of my age and how its a fairly new drug and stuff.... which i am fine with

there are a few other drugs he wants to try before trying those

so right now i am starting on Lamactal (lamogrinine or something like that) its usually used to treat bipolar disorder and seizures.....

i will see him again in like 3 weeks so yea.....
Never go to a doctor whose office plants have died.

ViewsAskew
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Post by ViewsAskew »

Excellent, Momo! I am so happy that he's working with you. I hope your first drug try works, but please know that if it doesn't, it's sorta expected, you know? There just aren't many drugs that work for all of us, so it's like a 1 in 3 or 4 or 10 or whatever chance that any drug will work for us (except the dopamine ones).

But, even if it doesn't, you're one drug closer to finding the right solution.
Ann - Take what you need, leave the rest

Managing Your RLS

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SquirmingSusan
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Post by SquirmingSusan »

That's great, Momo. We've been hearing of good results with Lamictal lately here, so I hope it works for you. I've been meaning to call my neuro and ask about it. On the drug rating sites, where people tell about their experiences with various meds, people really seem to have good experiences with it, and not many side effects.

I'm glad your doctor is finally willing to treat you.
Susan

Sojourner
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Post by Sojourner »

I'm very happy for you. Getting someone to listen is half the battle. Hopefully, you're on your way to winning the war.

Best wishes,

M.
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Neco
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Post by Neco »

I've never heard of that being used for RLS, but I hope it works out for you, and even if it doesn't I hope you will get the correct meds in the end.. Remember like others have said, don't give up, many medication failures are not uncommon.

Sojourner
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Post by Sojourner »

At one time, after exhausting a lot of front line meds, my doc suggested possibly trying Lithium. Not sure I have heard that recommended much either--if at all. In any event, we opted to revisit with neurontin/vicodin which has proved very helpful. But, in the future, who knows. Sometime, I guess it's good if you have a doc who tried to think out of the box, hopefully with some rationale, particularly when all else seems to be failing. Perhaps, better than an, "I can't help you anymore." Still, before something that sounds really, really, exotic I would want to do a little research of my own or at least ask the doc for the basis of his recommendation.

Good luck, M, let us know how it goes.

M.
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SquirmingSusan
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Post by SquirmingSusan »

Zach and others who are wondering why a doctor might prescribe Lamictal - It's an anticonvulsant which is older, cheaper and better tolerated than Neurontin or Lyrica. Since anticonvulsants (including some of the benzos like clonazepem) have been shown to help with RLS some doctors may want to try Lamictal. There have been a couple posts about it recently in the pharma therapy section. Another one that is well-tolerated is Tegretol, but I haven't heard of anyone taking that for RLS, yet.

I'm just a wannabe pharmacist, though, who has looked up lots of meds on the internet. Maybe one of the real pharmacists can explain it better. :wink:
Susan

ViewsAskew
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Post by ViewsAskew »

Even tegretol is used sometimes, but not often...
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Momo
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Location: NH, United States

Post by Momo »

actually, it turns out that my body does not like lamactal, i have only been taking it for a week and i have developed a lot of the serious side affects so i was told to stop taking it. i will call my dr on monday and go beck to the drawing board...
Never go to a doctor whose office plants have died.

ViewsAskew
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Post by ViewsAskew »

Oh, yuck. Glad he's working with you to find another one.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Momo
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Location: NH, United States

Post by Momo »

yea me too, but my parents are frustrated that they have to experiment with me on different meds. like because the are nervous about like side effects and stuff, plus like the one i just tried was over a hundred dollors and i only took a weeks worth and have to throw 4 more weeks worth away. thats alot of money (that we dont have), idk, i see where they are coming from, like that dotn want something bad to happen, and i understand that, because i dont want that either. they want to see about finding a specialist in our area, but i dont know how to go about finding one
Never go to a doctor whose office plants have died.

ViewsAskew
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Post by ViewsAskew »

Yep - all of what you said is a problem. It sux.

One thing maybe you could do...ask your doc for a week's supply with a refill for a month's worth if it works. It might make the cost less. It doesn't help the rest of it...
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Aiken
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Post by Aiken »

Also, Momo, many doctors have free samples of the drugs they are suggesting, and in my opinion a drug with significant possible side effects warrants giving the patient a freebie to test with. The drug companies are happy to give these to doctors because it often results in an ongoing prescription.

Requip, for instance, comes with a free starter pack. I think Mirapex does as well. Every heartburn drug I've ever used started as a sample, too.

Just have them give you a prescription as well so you can continue if it's working for you.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

SquirmingSusan
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Post by SquirmingSusan »

That's a bummer, Momo. Did you get a rash?

Be sure and ask the doctor/pharmacy for the generic if it's available. I know that lamotrigine was recently approved as a generic (July?) so maybe you got the pricier brand name. And even if a med isn't available as a generic here in the US, you can often order it as a generic from Canada for a lot less money.

And samples are always a great idea, especially for us RLS'ers who seem to need to try everything.
Susan

Momo
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Joined: Sat Jun 21, 2008 12:18 am
Location: NH, United States

Post by Momo »

Yea, the next one i am def. asking for a sample first.
My doc said lamotrigine came in a genaric, but then the pharmacist said it did not

no i didn't get a rash but they told me to watch out for one because apparently even though i stopped taking it, one can still appear..... idk
it just like messed with my eyes, like i couldnt focus or keep tehm open. plus like my mouth swelled and i was slurring my speech, and my coordination was way terrible, and like my skin and mouth was and is numb, but not like the good relief from rls numb (which it did not) but like the i feel doped up numb. and when i lie down, it feels like the room is spinning.
Never go to a doctor whose office plants have died.

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