Restless Legs Syndrome (RLS) Discussion Board

After being off my antidepressant for several weeks, I had to go back on. Guess I can't really function without that.
Not surprisingly, my legs are now worse.
At this point, I'm willing to fly anywhere in the United States to try to find someone who can help. I'm in northeast Ohio and have access to the Cleveland Clinic. And yet, having seen a neurologist at the Clinic, I'm still suffering. Also, I saw a neurologist at University Hospitals. And yet, here I am twitching and jerking.
Does anyone have a doctor that is actually helping them?

An option that you might want to explore would be to get an appointment either with Dr John Winkelman at Mass. General Hospital in Boston or Dr Brian Khoo at Yale in New Haven, CT. Both run RLS Foundation Quality Care Clinics and both are also familiar with treating people who are also suffering from mental illnesses like severe depression. However, you can also expect that you will be forced to see one of their associates and that the first available appointment may be six months or more from now.

I should also point out that the RLS experts all agree that for patients who have depression along with RLS, it is important to get the depression under control first and then to adjust the RLS meds to manage the RLS and the side effects of the anti-depressants.

Finally, there is one anti-depressant that is often recognized as RLS "friendly" and that is Wellbutrin. Wellbutrin works differently than any of the other ADs but is also not as strong, which is why it isn't used as much. Also, if you are intolerant to Sudafed and other oral decongestants (like me), Wellbutrin can be a big problem because it can also be a very strong stimulant that is akin to the amphetamines.

Thanks Steve.
I've tried virtually all AD medicines. Wellbutrin gave me an agitation/rage kind of mood. Had to quit it, too.
I agree, get stabilized on the AD medicine and then adjust RLS meds.
I'll check out the doctors you mentioned.

Thank you

I would recommend going to UPMC in Pittsburgh and seeing Dr. Aggarwal. That is by far the closest RLS quality care center to you and while I haven't seen him myself, I have heard very good things and he wouldn't be certified if he didn't know what he was talking about. With RLS that bad it would definitely be worth the ~two hour drive down 80. Also as a former Parma, Lakewood, Edgewater, and various Cleveland suburbs resident I wish you the best of luck!

there are certainly doctors out there who can help you. They're so darn hard to find because severe cases usually end up needing opioids, and doctors are scared to risk prescribing opioids. But these doctors do exist, and you now know of 3 clinics "near" you.

At this point, I'm willing to fly anywhere in the United States to try to find someone who can help

I like this attitude. Don't give up because you WILL find a doctor who can help and life will actually be good for you. Keep coming back here, to let us know what's happening or even just to rant or scream or whatever! We've been there and can certainly relate.