Going to neuro tomorrow

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Joined: Sat Aug 20, 2005 4:41 am
Location: Arizona

Going to neuro tomorrow

Post by Elizabeth »

Hi everyone. This is my first post on this forum.

I have been dealing with RLS for about 2 years.

I have other neurological conditions. At first a neuro had me on 200mg Neurontin. This was on top of several other meds for other things. It appeared to work.

About 9 months ago a new neuro in their practice took over my care. She eventually increased my dose to 3600mg (1200mg 3 x per day).

We brought it down to 2400mg. It is not as effective in the RLS area, and we hoped it would help some other conditons but it hasn't.

So, tomorrow I will ask if I can titrate off the neurontin and go on something else in it's place. I've heard and read a little about Requip.

What else is out there?

ANy suggestions would be appreciated.


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Post by ViewsAskew »

Hi Elizabeth,

Dorry the Neurontin isn't working. You have many choices, although the process of finding the right one or the right 'cocktail' of them can be a little tricky as you know.

Look here for information. It contains links to the Mayo Clinic Algorithm and many other articles on drugs. Also read the section on medication at the So. Cal. Support Group site. Much good information there.


I don't know what kind of relationship you have with your doctor. Some of us like to take in one document each time we go. I learned the hard way not to intimidate them and overwhelm them. They get testy and stop listening when they feel you've overstepped your job as patient :? .

Also, if you read something and then the doctor suggests something you think is not as helpful or even harmful, do your best to stand up for yourself. Maybe not that moment - but when you get home and are thinking clearly. It's important for you to partner in your care and feel comfortable about your doctor's choices.

OK, I went on TOOO long! Must be the nighty-night drugs kicking in. Good thing I don't drink anymore :mrgreen:.


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Post by TxSongBird »

Elizabeth I wanted to say that I take Requip .5mg three hours before bedtime and it has been a life saver. My Dr. is very open to me bringing in any literature for him to look at, drug information and then we discuss the plan. This Dr. also treats my Fibromyalgia too, so he is understanding and caring with my problems. I hope you can get your Dr. to listen to you and hopefully he or she will look at any information you have and discuss it with you.


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Post by Elizabeth »

Thanks for the support!

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Post by ksxroads »

Dear Elizabeth,

Sending you many positive thoughts on your journey. Anne and Donna are great sources of information and support! Keep us posted on your progress. Hazel

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Joined: Sat Aug 20, 2005 4:41 am
Location: Arizona

Post by Elizabeth »

Well the office visit wasn't too productive.

I see this neurologist primarily for chronic daily headache and for intractable migraine (with and without aura).

She said if I wanted a medication other than Neurontin for RLS I would have to make an appointment with another doctor in the same practice because he (the other doc) would have more relevent info on the syndrome.

However, I am titrating down off the Neurontin due to weight gain and its ineffectiveness for chronic pain.

I do look forward to reading a lot more posts here and hope to gain more info about the different meds available. It's so much easier to ask a question or read the old posts than it is to do a general search on the internet.

Thanks again for all your support.



Post by Guest »

Sometimes it can be overwhelming, this searching for answers. For a doctor to refer one to another more informed, I would find that encouraging! Hopefully she will be able to get you in to see him soon.

Right now I am collecting any amount of encouragement as it gives me hope! Hope helps my mind to remain confident that life will get better.

Have had a couple of rough days and nights. Had been using my allbuterol inhaler more lately which becat says affects her symptoms, so that could be part of the problem. A dear friend died unexpectantly. So going very slow... Luckily my jury duty was postponed till Oct 11... so I didn't have to go in to serve today.

that is what I have gained the most, is to find information that makes the light go off in the ole noggin' - *BG* I was thinking, I've cut back on coffee so much so that I pour a cup in the mornings out of habit and find that I don't drink it. I've quit making it at home. so by process of elimination and implementation I am slowly but certainly improving my quality of life. That helps mentally, when the body still gives me a difficult time!

It has helped me greatly to read the info and posts on this site and copy and paste into word document which I save in a rls folder on my computer. Have a print out of the folder either way I can readily access the information as needed.

I have an appt to *interview* another doctor tomorrow, just because two weeks back in the throes of misery I called and made appts with drs others had suggested. He is in the same town where I work.

I have seen one doctor in another town who was not aware of RLS yet he thought I may have problems with fibromyalgia... He was very supportive, and I felt very encouraged by his willingness to work with me. He was interested in the rls pamphlet I left with him and he said he would research into it. I was to go back yesterday, but the funeral of my friend was at the same time, so I am going back next week.

tending to ramble. Keep looking forward, you have many here who are sending you many encouraging thoughts. Hazel

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