New Doctor

For everything and anything else not covered in the other RLS sections.
Neco
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Post by Neco »

I see.. Well at least she called..

Ok.. I personally tried Neurontin, and it did bunk.. However it has helped some people on this forum, I don't know who actively takes it though.

It does have side effects that could extend to daytime tiredness, but ultimately its down to your personal experience.

Also.. Lyrica is a cousing of Neurontin and I actually felt like it was starting to do something when I had sample packs. However I have no insurance and it would have been incredibly expensive to get a prescription at the doses I would likely need.. (a few hundred mg's a day)

You need to tell her, you're willing to try this med, but if it doesn't work you need to know you have a plan for another medication next..

And assuming you haven't discussed it yet (sorry, long thread) you need to ask her straight out, if she is familiar with opiates being used to treat RLS (ask it just like that) and if they are something she is ultimately willing to prescribe if nothing else works.. Play it up "cause I can't keep playing these games with medicine, I am sick of being tortured by these symptoms all day, every day" etc..

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

Thanks. She did mention to me that she has treated paitents with opiates. When I had my cataract surgery, I let her know that the Fentanyl used to knock me out made the RLS symptoms go away for two days.

I am just bummed out over the iron transfusion. Wouldn't it be neat if that would do the trick?

Dale

Neco
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Joined: Tue Oct 04, 2005 10:18 am
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Post by Neco »

Fentanyl is pretty strong, usually given by patch on the skin, but that also makes it dangerous, as once it absorbs into your skin, you can't get rid of it and if you take too much you end up in the hospital..

Not surprised it would work for 2 days at all though. given its mode of delivery.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

PLEASE dont ever give up. I know how difficult it is to deal with rls without any help. But just keep in mind there is help and you will keep going until you find that help!!

A very large percentage of RLSer's in this group will tell you how many drs they went to, and how many had to end up educating their Dr about rls.
The recent TV ads and research has made it easier to find a Dr that at least has heard of rls, many yrs ago, if you tried telling a Dr about your legs, they just looked at you like you were a nut case.*L* I have often said I would love to go back and read some of the Drs files on me from yrs ago. Because back then not many had even heard of rls.

So when you get to the point you think you cant go on. Just remember there is now help and while it might take time to find the right Dr, you are going to keep on keeping on, until you find that Dr!!

Also keep in mind that while most Drs now know about rls, not many really know how to treat it. So read and educate yourself about rls, so you can be sure the Dr treating you is really educated about rls. The more you know about rls, the better treatment you can find for yourself.!!!!

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Post by dogeyed »

Sleuth,
I am SO glad your doc responded in a positive way to your email to her. I think you've hooked a fish now! Yup, take the Neurontin, if nothing else it'll make you feel pretty good in general. And now, since you got the doc's attention, and she's aware of opiates, if the Neurontin doesn't make your RLS ease up, why, maybe she'll likely give you another medicine to try, until you guys can get it straight.

I haven't taken Neurontin, but I do take the cousin Lyrica for low back pain. It's the only thing that worked for that. Real expensive, but I think the Neurotin is much cheaper. When my doc gave me Lyrica, he did say it might also help the RLS, but it did not, so I still have to take my opiates. I take four drugs altogether, but only the opiates stopped my legs from killing me. But give the Neurontin a shot, it just might work. By the way, you should sleep really well with the Neurontin.

Sorry about the iron infusion, but I think you said you were taking supplements, and eventually they should help bring your iron up. You could take an extra one for just iron, if you want.
GG
"It's not how old you are; it's how awful you feel."

cornelia

Post by cornelia »

Neurontin usually only works in high doses (900 mg or more). This is what dr B says and is also my own experience. Personally I think it works better as an add-on medication than on it's own.
It might work for you, but even if it doesn't work (well enough) your dr might want to help you with opiates and that is a big + and IMO a reason to stay with this doc. if you can.

Corrie

ViewsAskew
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Post by ViewsAskew »

I think Corrie nailed it - opiates are considered the LAST option to try. And, for relatively good reasons. None of the drugs we take are casual drugs, but opiates have a special set of concerns and difficulties. This includes how difficult it is to get them every month to how people perceive us to how dangerous they can be if we're not careful.

When we go along with our doctors (who do have more general experience about being a doctor than we do), we're signaling that we play well with others, that we're willing to try, and that we respect them. They NEED that or they aren't going to give us the next thing.

Only time will tell if drugs like Neurontin, Lyrica, or the dopamine agonists have any long term draw backs. We don't know. We know some of the short term ones. In the meantime, they are still considered less potentially dangerous than opioids and that is the route the doctors will take. If we rush that, we risk them not being our doctor. Any doctor who says he or she will use them when necessary is worth trying to work with. Not for years if they keep withholding, but at least for several months as they try to do what they see as in our best interest.
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.

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

I am quite shocked at this doctor's reaction to my email, which was rather scathing. Since then, she has emailed and/or called to discuss this medication and the iron supplements she prescribed. She even has a sense of humor. I was joking about one of the side effects and she really laughed. I like someone with a sense or humor. She also had her office person call me to let me know she was calling in the prescription to my pharmacy.

She believes in starting out with extremely low dosages. Personally, I like that. I have become sensitive to medications, so starting out slow is beneficial to me. I never was, but now I'm 66, so maybe my body changed. I'd rather start out slow to give my body a chance to adjust. I am taking 100 mg. tonight and then up to 200 mg. tomorrow night for four days. I then have to call her to see what happens next.

I am not anxious to rush in and take opiates. I am still afraid of them, for some reason. I'd rather work my way up the medication ladder.

In the middle of all this, I'm trying to find an apartment out of NYC. This is a major change for me. I've lived in the same neighborhood of NYC since 1964. It has changed drastically, though, and I have to move on. I have been avoiding this for two years now and living here has made me sick.

Dale

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Post by dogeyed »

Hooray Dale! Hoo-ah!
Sounds like a plan to me! Oh, I'm overjoyed you got you some help, and you are thinking forward again, and not stuck no more. Oh, there will be bumps along the way, but you're back on the main road again, blessed sunshine dancing in your eyes, dark clouds rolling away.
GG
"It's not how old you are; it's how awful you feel."

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Dale, that really is wonderful. Hanging in there turned out to be a good thing to do. Keep hanging with her and see what happens.

Good luck on the move. That must be a very tough decision.
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.

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

I've decided to keep a diary of my reaction to the Neurontin and email it to the doctor on Monday. I started it on Wednesday night with 100 mg. It helped the next day. I increased it to 200 mg, but the RLS symptoms are starting earlier each day. Actually, it is interesting to keep this diary. I think it will help the doctor a lot when deciding which dosage and times to take this medicine.

The one day that I didn't have the RLS symptoms until very late in the date was really terrific. I forgot what it feels like to be symptom free during the day.

About the move. I take a verrrry long to accept that things have changed. Look at how long it took me to accept that I had RLS...over a year of avoiding it. It took me three years to really accept that I had to move. It is definitely not easy. I've lived in this apartment for 38 years. I think that should let you know how hard it will be to move, but I must.

Dale

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Post by dogeyed »

Hi Dale,
On your decision to move after so many years in the same place, I had a similar experience. We lost our home of 20 years when I couldn't work no more, we cashed it in and found us a heaven-sent smaller home, all paid for, now debt-free. But gosh, it was sad to go. It was sort of like losing a pet, you don't know how much it will hurt until you walk away. It bothered me for a couple years, but now I am so happy here and over the whole catastrophe, that I rarely think of it, except when husband and I recall fond memories. Our old place had one bathroom, but this new one, even tho we downsized, has TWO bathrooms, and talk about comfort! You know the saying, when you close one door, another one opens, and this is true. In fact, husband and I sometimes say we're so glad we don't have to live with a flooded basement no more (new house has no basement). So, I jus wanted to tell you that if you feel enough push to go, from whatever reason, it's for the best. Else we would not make changes and move forward.

On the other hand, about 10 years ago, still in that old house, I had a chance to buy a house on a lake (but the home was cheap), and I sat out on my back deck and pondered it, becuz we did not HAVE to go, and we had just built the deck and I loved it, and I realized right then and there that I could not say goodbye yet. If you think things around you are really unacceptable, tho, and may even get worse, why, get thee to a dream place much nicer than where you are, and hunker down for the storm that comes when such change comes thru.

I wonder, will you look for a place with a yard, or live in a condo or townhouse or suburb, or whatever your inclinations are, I hope you will daydream of those things. I know you said you had looked around some, but don't recall how that turned out. Me, I love all things to do with homes and architecture and design. I reckon you'll be looking at HGTV and getting ideas from all the folks on there that move to new homes, will kind of oil the get-up-and-go thing. Well, sorry to others that I'm off topic, but I just wanted to wish Dale best wishes on her new adventure!
GG....p.s. glad the neurontin helped a little!
"It's not how old you are; it's how awful you feel."

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