mirapex not working--is it not RLS?

[guest]

Hi Folks,

I have been lurking here for a while as I have been suffering from some symptoms that my docs think could be RLS.

So far I have tried 300mg neurontin for 2 weeks (no help--in fact got the other foot tingling too) and then several weeks later 4 days fo Mirapex 2 at .25mg and 2 at .5 mg.

The mirapex made me really nauseated and i kept seeing flashes of light at night when my eyes were closed or open. Didn't do a thing to keep me from waking up from tingles 2-3 times a night.

The only thing these drugs did was make it easier to fall back asleep after getting up to slap on cold packs on my feet (the only thing that gets them to stop for a while) and making the tingles feel just a little more like buzzy instead of as crawly as normal. I get almost the same results with Slient Night herbal pills but less side effects.

According to my doc this drug works for almost all rls folks so the fact that they are not working and that the senstations are only in both my outer heel/ankle area makes him suspect something else.

This is so frustrating because normaly I am a very healthy active person who does not like to take any pills unless I have to.

Do Mirapex or parkinson's drugs not work for any of you officially rls diagnosed folks? Did i not give mirapex enough of a chance?

Any feedback is much appreciated!

thanks,
nelly

P.S. Whether I've got rls or not I sure sympathize with you folks--this lack of sleep thing has really turned me into the shell of the person I once was. You guys give me encouragment to try to stay positive because it is soooooooo easy to break down and dwell on this misery.

[sardsy75]

Hi Nelly

Welcome to the group and sorry you had to find us under such circumstances.

Do not discount your doctor just yet, as he/she may just need some help understanding exactly what RLS is; and it may even turn out that once both of you have learnt a little more about it, it could be RLS, or it could be something else entirely.

So, I'm going to start by pointing you in the direction of our "Useful Websites" thread under the "New to RLS" topic on the Boards:

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=94

In here you will find links to three very useful "articles" for both you and your doctor.

1) The RLS Foundation 2004 Medical Bulletin, which will explain RLS in terms that may (or may not) go straight over your head, but will be quite useful for your doctor in making a correct diagnosis for you:

http://beta.restlesslegs.org/pdf/2004_m ... lletin.pdf

2) The Mayo Algorithm for RLS, which defines RLS and how it should be treated in more depth. (If you keep scrolling to the bottom of the "useful websites" thread you will find a summary of the algorithm which Jumpy so very kindly posted for us)

http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf

3) The Southern California Support Group Medications Page, which lists pretty much everything "under the sun" which has been tried for people suffering from RLS (be it mild or severe).

http://www.rlshelp.org/rlsrx.htm

If you're after information about how to combat your symptoms without drugs, then I highly recommend Jill Gunzel's RLS Rebel site:

http://www.rlsrebel.com

Do not stress too much about the drugs you have been prescribed not working in the first instance. It may be a case of having to find the right drug for you. Not everyone responds to each of the drugs prescribed for RLS; for example, I had a majorly adverse reaction to Neurontin. It's a case of trial and error and a LOT of patience. I'm still trying to find the right cocktail for me and am heading off to see a third Neurologist next month.

You may find that you need to work with your doctor a lot more closely, reporting on if your symptoms DID actually disapate for a while on the lower doses of the Mirapex and Neurontin. If they did, then it may be that you need to work together in working your way up to a dosage that suits you. If not, then as you will see in the SCSG Medical page, there are a lot of other options for you to explore yet, so don't give up! You mentioned that your sleep has pretty much gone out the window, so your doc might want to try you on a drug that helps you sleep. If you're not into that, the herb Valerian has been found to be very useful in helping with insomnia. It's strengths can vary and it can be found at most health food stores and pharmacies.

Take it one step at a time, one day at a time, and as you've already figured out ... Stay Positive!

Take care of you and keep us posted on your journey. You have found a family here and are more than welcome to "chew on our collective ear" at any time.

[becat]

Hi Guest,
I will be the first to tell you that we all suffer just a bit differently from each other.I'm not a doctor, so I couldn't say that more testing wouldn't be helpful. As with many "labels" this is a disorder that is diagnosised by ruling out things, not pointing to a certain thing. The fact that Mirapex works or does not is one of debate. I personally had some good results that lasted only 6-8 months in the almost two years I took it. In fact, I felt that the last year it made things worse for me. BUT. I know there are some here who have taken it for longer than I and have done very well.
Just because Mirapex did not work doesn't , in my opinion, mean you don't suffer with RLS. Your symptoms sound like others here. I repeat, we're all so different here. Yes, there are some common themes, but this is medicine, it's all science, not always exact for each human body.
Your best bet now is EDUCATION. Below I've listed a link on this site that discusses the diagnosis and treatment for RLS. You may find it helpful to print it out and read it over. Maybe, take it along to your next appt..

http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf

The other thing you can do is research your family for other family members that suffer RLS symptoms, a family connection is one of the truest ways to diagnosis. Did you suffer growing pains as a child? Did anyone else in your family. Do they have tingle feet or hot feet?
Don't give up, your doctor may want you to see a specialist. You can also find a doctor in your area with the link below. (also from this web site) It's best to start with someone that has some knowledge about this disorder.

http://rls.org/find_a_provider/

You have hope here, I promise you've found great people here. We'll listen, share, and help where we can. Your not in this boat alone, and here we take turns rowing.
I hope you find some answers soon. But don't give up fighting for them.

[nelly]

Hi Guys,

Thank you for passing along all that info!!!! I definitely need to spend some time reading!

As for your comments about Valerian root--that is one of the ingredients in this Silent Night herbal pill by Nature's Way that I have been taking. I showed it to my doc and he said that is a good one to try.

Most importantly you have reinforced my feelings that I think I deserve to demand some sleeping pills next time for when things get really bad. I have asked before but in my "nice polite young woman way" that obviously doesn't get me taken very seriously. These docs get so nervous about handing out anything that can be habit forming and I just wish they would trust me on the fact that I am one of those people who does not enjoy being in an altered state and try to avoid it if possible. I am one of those straight laced folks that never smoked, and rarely even has a drink. Reality and a piece of chocolate is trip enough for me


-nelly

[Kimberly]

I had no luck with just mirapex or just neurontin (or a LOT of other medications). Neither worked until I combined them. 900mg of neurontin and .25mg of mirapex at 5 and repeat at 7pm. I have recently increased the mirapex to .50 mg.

It is all trial and error, and as stated above, requires much patience. I hope that your doctor is willing to listen and learn and experiment with the medications!

Good luck to you!

Kimberly

[lyndarae]

Hey Kimberly, This is Lyndarae I wanted to ask you how long you have been on your cocktail of mirapex and neurontin?? As this is what I have just been asked to try. Im only taking 600mg neurontin at bed and very low dose of mirapex did you have any relief and hows it going now?~~~~~~~~~~~~~~~thanks Lyndarae

[tashton]

The one thing I found with neurontin which I am taking is that the best way for it to work is to keep a level measure of medication in your body at all times. Just taking it at night isnt the way the drug was intended. I take 200mg four times a day which is a low dose and I am sure I will eventually have to increase the dosage but keeping it level works for me. I add to it at night with a 2 mg lorazepam. Hope you can find something that works for you.

[Rubyslipper]

I'm jumping in here a little bit late but just wanted to reinforce what the others have said. The one thing we all have in common is our differences. We have to become our own guinea pigs to find what does or doesn't work. What is great about this board is that we tell others about our success or failures not to get them to change what they are doing, but just in case it might work for them. I used to be on Wellbutrin and Mirapex. That worked quite well until I let other people convince me that an anti-depressant was a horrible thing to be taking. So I went Mirapex alone but that sure didn't help. I next tried Mirapex and Neurontin since I was having other problems. That hasn't been working either so now I am taking both of those plus Wellbutrin again. I am on low doses of all of them. One thing I have learned is that you must learn to take your meds at the same time each day/night and to take them BEFORE the symptoms start. You didn't say (unless I just missed it) do the tingles stop if you move around? Do you have an almost uncontrollable urge to move? I also have had trouble feeling like I shouldn't be using all these meds. Many people survive by means other than with meds. But I have come to the realization that I need them to survive. I have to work, I am the breadwinner in the family. My husband can't so that leaves me. Not looking for sympathy here, just stating facts. So I have to do what allows me to function. I can't go several nights without sleep (no one can) so I use what helps me. Sometimes it still isn't enough. So hang in there and let us know what you do. We've all been there and we are here for each other. Love, Ruby

[sthomp66]

Am I the only one on this site who thinks Ultram is a miracle worker? I tried Mirapex one month and had horrible horrible nightmares, I mean nightmares that aren't even possible (a plaid bull dog was chasing me in every one). I was flat out loopy with that one. I've never smoked and the last time I felt that loopy was when I slurped a huge sip out of my husband straw in his soda, which ended up being 90% spit from his copenhagen chew. Go ahead and gag, it's okay, I am too - remembering how disgusting that was. I thought I was gonna die that night, I couldn't believe how whatever is in chew affected me. Horrible, I mean horrible. But back to the subject- Mirapex did nothing helpful for me.

Shelley

[becat]

I fell right out of my chair. Shelly, I'm sorry having lived around "dippers" all my life that cracked me up. Ok and gaged me too.
Yes, there are others here that have had great success with both Ultram and Mirapex. I was not one of them, for ither medication. But they works for many.
It's just different for all of us. I think what I have come to understand, that there isn't a clear cut way to treat this RLS, across the board. There really hasn't been one medication or treatment that works for All of us.
I, myself, have tried many of the things that are common to this board. My body didn't like some of them and some just made me feel worse. There are those that did nothing at all and the ones I have choosen not to take.
I have said it before..........We need to be our own Gatekeepers. Not the doctors. They should be our partners, the practitioners. However, it is knowledge of what our body can handle, what works, and what is harmful, that gives us our guide to treatment. My doctor is educated about A Body, many bodies, but I am the most knowledgable person on this earth about my body.
Honey, if Ultram works for you, God Bless. Go for it. Your not alone with that one. I found that Percodan in a small dose at night works best for me. The real trick is longevity of a treatment.
AwWWWhhhhh I needed that laugh, thank you tons for it.

[Guest]

Hey Kimberly, This is Lyndarae I wanted to ask you how long you have been on your cocktail of mirapex and neurontin?? As this is what I have just been asked to try. Im only taking 600mg neurontin at bed and very low dose of mirapex did you have any relief and hows it going now?~~~~~~~~~~~~~~~thanks Lyndarae

Hi Lyndarae!
I began the mirapex/neurontin cocktail in 2000 and am still on it. I had much success until September 2003 when I began having daytime movement and 'tics' and onset of severe fibromyalgia pain. I believe, however, that my symptoms changed/progressed due to extreme stress. In 2000, the cocktail started off low, but higher doses than you are taking. I had much success with 900mg neurontin & .25mg mirapex at 5pm, repeated at 7pm. While I still had 'tortuous' movement for several hours before bed, I was able to fall asleep by 11pm and wake at 5pm. Those 6 hours of uninterrupted sleep were a godsend and enabled me to continue working until 2003. If I did not mention it before, each of those meds alone did not work. Sucess came by using combination of both and I discovered that option here! I went to my doctor, told him I'd been on this site, told him I would like to try the combination, and he said 'go for it'! I am extremely fortunate to have found a doctor who is willing to try just about anything (and I think I have)! Good luck to you!

Kimberly

[jan3213]

Kim, it's Jan

So you have fibromyalgia??? So do I. It's interesting how many people who have RLS eventually succomb to fibro.

I was just diagnozed about 3 months ago--but probably have had fibro for a lot longer.

Hope you're doing well.

Jan

[sthomp66]

Becat: Believe me, I've never taken a drink after him again. I didn't grow up around dippers, my mom smoked but that's about it. It was funny when my husband and I were dating, after about 3 dates, we were sitting in the car and he said "I've got to tell you something that I've been hiding". My stomach hit the floor, I thought for sure he was gay, married, had 12 children with all different mothers, something horrible for sure. It was the cutest thing, he took the copenhagen can out of his glove box. I about passed out and yelled at him for it being something so small comparitively to what filled my head. Of course, now I'm trying to get him to stop, not being real successful though.

[Guest]

Kim, it's Jan

So you have fibromyalgia??? So do I. It's interesting how many people who have RLS eventually succomb to fibro.

I was just diagnozed about 3 months ago--but probably have had fibro for a lot longer.

Hope you're doing well.

Jan

Hi Jan....I've had fibromyalgia for many years, but the long-term affects of little to no sleep and high stress have made the condition worse. The two most important things I've learned are recommended: 1) get good restorative sleep (ha ha) and 2) anti-depressants - which typically aggrivate RLS. SO, lol, I pretty much live on advil and spend much of my day recovering from the RLS/PLMD of the night before! I had, on occassion, tried the 'arthritis' type meds (celebrex, etc), but they really didn't work for me and apparently now they're finding, unsafe. I'm sorry to hear that you have it too. My best advice is not to let it get to the point where it is debilitating. Rest as much as you can. I use heat pads and hot compresses or hot shower or soak in the tub for pain. A new symptom for me is that anything rubbing on my skin at night feels like sandpaper. I have to have very soft sheets since I can't control my movement. I hope you have luck with something and if you do, please share!

Kimberly