seeing dr. what best to ask?

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seeing dr. what best to ask?

Post by sister*awake »

I see my neurologist tommorrow (couldn't get on the board earlier) we have been playing around with different meds for a few months and also desperately trying to get my Ferretin levels up. there is not 1 day that I am symptom free. :evil: I am currently on 2mg requip and, neurontin, and iron at bedtime. Effexor and clonazepam in the daytime for depression/anxiety. I also have hydrocodone to take as needed but I rarely use it only when I am in tears from the RLS making me crazy,

here is my routine: without fail, by 10 pm my legs start to get twitchy, IF I don't take my meds or am caught without them I am In full blown agony within an hour and climbing walls!! can't sit still, leg spasms, no pain whatsoever just horrible discomfort! I am so depressed over this I am unable to even function it does bother me often during the day as well but never as bad, I feel I have told him everything I can and he certainly is not rushing me through appt or anything? what else can I say? this is affecting my relationship and my life I am not always ready to end my day by 10pm!!! I have to sleep alone I can't bear anything touching my legs once the symptoms set in so I am on the couch and husband..upstairs

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Post by ViewsAskew »

I am sure people will give some great advice...I'd also recommend seeing if you can read through some old posts about the same subject just to see what has been said in the past. It's not that easy to search here, but reading the old posts can be so helpful.

One thing that struck me immediately is that with Requip, you MUST take it 60-90 minutes before symptoms start. So, if they start at 10, take it at 8:30 to 9 PM. I set an alarm clock on my watch or phone (or both).

Many people split their dose; part of it before symptoms start, the rest just before bed. That gives extended coverage and helps reduce side effects that some people get when taking all at one time. Another option is to use two different drugs, one to take earlier that helps prevent the RLS from starting but that doesn't knock you out, and then the Requip at bedtime.

For me, I've found that being extremely honest, direct, but not accusatory and definitely not as if I'm at my wit's end (that's misconstrued) is the best approach. Something like, "This RLS is causing problems in so many parts of my life. I need your help to solve this. I know how hard you've worked with me so far and I hope you can continue to as we still do not have a solution that is working." And then explain how it's not working.

I hope the appointment goes well.
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.

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Post by sister*awake »

Thank you so much! something to take earlier for the RLS that won't knock me out is exactly what I need, altho the requip makes me a bit nauseated, it is not unmanegable and I have never taken it alone so i don't know it's sleep effect on me but I believe it is the neurontin that knocks me out. the last time I was there he said he wanted to see me on only Iron Ideally for my RLS....I feel like I would cut off my legs without some med that would make me sleepy ,but, I wold love it as well if something worked THAT easily. also I was reading the hot/cold effect and I am definetly one who has to have it cold if it's above 65 in the room my legs are much worse, and sleep is out of the question!! I will let you know how the appointment goes!

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Post by Sojourner »

sa, sorry you are having so much difficulty at the moment. I agree with ann in that an honest, straight forward but tactful approach is best. If your neuro is "working with you" that is good. Unfortunately, the in-between appt's when things are not going well is not good but probably the norm. I also agree with ann that we must be proactive with our rls meds. Most do not work that well, or so it seems, once symptoms start. So maybe a better schedule of meds will be helpful. Not sure how this all works if your iron is low and that is the main culprit...but again if your neuro is trying that is good. Don't take this wrong and I do not offer it cavalierly but use the vicodin if it helps. Lots of fear there I know but it may be a better med for you. And, if you try it a bit more regularly you may get a better feel for whether it can perhaps be a med or choice for your doc to prescribe and follow your progress. I pretty much use neurontin and vicodin (as needed) but have no qualms about using it when I feel I need to. Best of luck with the visit.

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Post by zookeeper »

I agree with Sojourner. If the vicoden or percocet works, take it. You might see if vicoden will work, rather thatn percocet. It's less strong an opiate and for me, I can take it throughout the day with no ill effects on my ability to function. In fact, I usually take it 4 times a day, since mu RLS can and does flare up 24/7.
You said that your doctor ideally wants to treat your RLS with iron alone. I'd question that...perhaps take him a copy of the Mayo algorythym to review what your options are? It doesn't make sense to suffer while he's trying to ge the iron levels up.
hoping your appointment goes well..

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