can't take this RLS

[Grammieof4]

Horrible, horrible RLS

[Grammieof4]

Don't want to take Mirapex. Uncomfortable with it being a Parkinson's med & the side effects (even though it had worked for about the last month.) Trying Gabapentin - PCP prescribed 300 mg at bedtime for a week and then next week 600 mg at bedtime. Have taken it the past 2 nites and have been up all nite both nites with the worst RLS ever experienced. At 4:00 am tried another 300 mg gabapentin - no change. Finally took Ativan and .125 of the Mirapex and was able to fall asleep. I am miserable.

[Madlegs1 in reply to Grammieof4]

If you came off the Mirapex suddenly, without tapering down or tramadol, then the extra rls you are experiencing is withdrawal from the Mirapex . The Gabapentin won't resolve that and will take a few weeks to effect relief.

You should get help from your doctor tocope with the withdrawal.

The fact you fell asleep after retaking Mirapex confirms what I'm saying.

If the only reason you wish to stop taking Mirapex , is fear of it being a Parkinson med , then you are misinformed. The RLS dose is a minute fraction of the dose for Parkinson. And at that dose does not have the same side effects. Those who have experienced suchside effect were usually on elevated doses , not recommended for RLS.

My suggestion would be to return to as low a dose of Mirapex as will calm the rls , and continue with that untill you experience augmentation - which may not occur for a long time.

Time enough at that point to look at alternatives.

There are few enough options for RLS treatment, it is unwise not to go through them systematically.

Good luck.

[Grammieof4 in reply to Madlegs1]

Hmm it was my PCP that told me I could just stop the Mirapex when I went on the Gabapentin.....

Last night I thought I'd try skipping my Niacin and slept thru the night. Did have a few minute's trouble with my hands but used the Restless Leg Cream and it seemed to help.

[nightdancer in reply to Madlegs1]

Excellent reply, madlegs!

[beady3 in reply to Grammieof4]

Well Grammy we all feel like that don't want to take because of the side effects most are for Parkinsons but you won't get it,if it worked you were very lucky go back on it ,it could take ages to find something that helps,

[Pippins2]

Grammy, I would have said exactly what Madlegs and Beady said x

[Grammieof4]

Just afraid that I will have to keep increasing doses of the Mirapex. My PCP said that will happen.

[nightdancer in reply to Grammieof4]

increasing it is exactly the wrong thing to do. it turns into a vicious cycle called augmentation. In the context of RLS, augmentation means 'worsening of symptoms" cause by too high of a dose of a dopamine med.

[Hidden]

Grammy, yes you will probably find you need to increase the dose at some time. And the new recommended dose is now no more than .25mgs thats two pills. So, never take any more than two pills. I also agree with all that Madlegs has said. You stopped the Mirapex and you had withdrawals. The 300mg Gabapentin is a very low dose so that would not have helped you. You can take the low dose of the Mirapex AND the gabapentin which might be better. as two low doses of two meds can be better than one dose of a med like Mirapex that has to keep being increased.

[Grammieof4]

I take Niacin at nite. also take and flaxseed oil and Vitron C (recommended by my PCP)

I just looked Niacin up and it says can be taken am or pm so I will try it in the morning.

[Grammieof4]

Iron creates a constipation issue with me; that's why she prescribed Vitron C because it's easier on the stomach/constipation.

[Grammieof4]

hmmm I do take melatonin. guess I could stop this if the other med can allow me to sleep.

[Grammieof4]

a friend of mine had to keep increasing his dosage -- finally had to go through withdrawl. he is now on gabapentin - 600 mg. 3 times a day.

[Hidden in reply to Grammieof4]

Thats why its now recommended to NOT keep increasing a dopamine med.

But its up to you if you dont want to take it then fine. But you will have to wean off of it as you have found out just stopping it made your RLS worse. I hope the Gabapentin will work for you.

[Grammieof4 in reply to Hidden]

I sure hope so too!

[Grammieof4]

thanks!

[Grammieof4]

i'm not even sure why I have to take the iron. my ferratin level is 85. Supposedly anything above 75 is ok.

I take citalopram, wellbutrin ER, valsartan, crestor (which I know contributes to rls), allegra (also does but I need it) and baby aspirin.

[Hidden in reply to Grammieof4]

Your ferritin level of 85 is a good level as far as i am concerned.

The citalopram is also probably making your RLS worse too, as its a anti-depressant. Please look at the treatment page on this website rlshelp.org you will find a list of meds which are available for RLS, just ignore the high doses it says for the dopamine meds as the website has not been updated yet. Also you will see a list of meds which can make RLS worse, + a whole more good info.

[Grammieof4 in reply to Hidden]

Thanks

[Grammieof4 in reply to Hidden]

Wish I could stop taking it...my husband died in February; therefore the need for Citalopram and Wellbutrin.

[nightdancer in reply to Grammieof4]

There ARE others that can be tried, though. I am afraid your RLS is going to keep it up, and keep you up, with the Citalopram. It is well known to affect RLS. Mirtazapine is available in the UK, and would be worth the discussion with your doctor. I am sooooo sorry for your loss.

[nightdancer in reply to Grammieof4]

you do not need to if your ferritin is 85, Grammy12. The RLS specialists and experts say between 50 and 70 is good for RLS. Dr. B is one of them, and his word is golden.

[nightdancer in reply to Grammieof4]

Grammy12, Citalopram is one of the meds in the list to avoid. It's brand name is Celexa in the US, and it is one of the meds to avoid, as it CAN and will make RLS worse for a lot of people. I would be talking to my doctor, and also see the entire list of things to avoid on RLS UK's web site.

[Grammieof4]

never heard that before!

[nightdancer in reply to Grammieof4]

I have never heard that iron would out you right to sleep before except here in this ONE spot in 22 yrs of researching RLS. Iron does not have those qualities to "put you right to sleep". The person who said this is no longer here, and no I have never heard of iron, any kind, knocking a person out so they can sleep.

[nightdancer in reply to Grammieof4]

as you may have noticed "someone's" comments are no longer here, Grammy12, so I have deleted some of my comments that were directed at her, while I had to defend to myself. But that is over, just did not want you to be confused. LOL

[Kaarina Administrator in reply to nightdancer]

Thank you nightdancer.

[Grammieof4]

I've been taking 3 mg melatonin with thiamine for a long time. It helped until a few months ago.

[nightdancer]

But, we have some VERY knowledgable doctors that we deal with on a daily basis, but some do need "training".

[nightdancer]

it does not affect everyone that way, but Melatonin should only be taken in short spurts, as in for jet lag. It does mess with RLS in some people, for sure.

[Pippins2]

Grammy,my condolences on the loss of your husband, it is understandable that you are having to take antidepressants to help you at this difficult time. The Wellbutrin is safe to take it will not worsen your RLS but the Citalopram almost certainly will. Just a suggestion but maybe you could discuss with your doctor about switching the Citalopram to Trazadone? That is considered a safe antidepressant and taken at night also helps you to sleep. The Allegra antihistamine is usually one that is ok to take for most of us. .Pippins2 x

[Grammieof4 in reply to Pippins2]

Thanks; I will ask the doc.

[Grammieof4 in reply to Pippins2]

Went to my PCP Tuesday and she feels that a 20 mg dose of Citalopram isn't really affecting the RLS. She said Trazadone is used for sleep, not for antidepressants. Tried sleeping and resting with my legs elevated and it seemed to help some.

[Pippins2 in reply to Grammieof4]

Grammy Trazadone can be useful as a sleep aid but its primary use is as an antidepressant, a simple Google search could tell you that so many find it concerning that your doctor does not know something as basic as that! ! I am afraid she is also lacking in RLS knowledge because a 2mg dose of Citalopram can greatly increase RLS. ..Pipps x

[Grammieof4 in reply to Pippins2]

Thanks. She swears she knows all about this. I'm trying to get an appt with dr. Christopher Early, the RLS specialist at Johns Hopkins, but he is booked into next year 😢

[nightdancer]

An, if it works for YOU, that is great, it does NOT work that way for everyone, as we all know. Different strokes. You "feel" it is the best thing, and that is great for YOU, lizard, but as usual we cannot generalize. Trial and error.

[Grammieof4]

No

[Grammieof4]

Need an antidepressant - I was my husband's caregiver for the last few years and he passed away in February...

[Pippins2]

I changed over from Paroxetine (Paxil ) to Mirtazapine ( Remeron ) and it had been beneficial effect on my RLS. .Like most things in RLS world we all react differently but I know many RLS sufferers who have switched to Mirtazapine and seen an improvement. As Grammy needs an additional antidepressant I suggested Trazadone as it promotes sleep. I couldn't personally get on with Trazadone but many do well with it. ..Pippins2

[hairyfairy]

Tell me about it! I wish that I knew what I`d done to deserve it. Maybe hindus are right, & we get punished for bad things that we did in a previous life. I must have been truly evil if this is the case!

[nightdancer in reply to hairyfairy]

We have all wondered at some point what we did "to deserve it". The answer is we did nothing but to be born. 70% of all RLS is genetic, so we did not have to do anything. as with any disease, for most of them, we did not bring them on ourselves, unless it is secondary RLS, caused by taking the wrong classes of meds, etc. But, we did not ask for this, that is for sure!

[Kaarina Administrator in reply to nightdancer]

As many other people with medical conditions have done nothing wrong either but be born, as nightdancer says.

Thank goodness there are forums like this one where we can share, help and support each other as best we can.

[Grammieof4]

Ok now I feel like I'm up Shit's Creek without a paddle. I cut my Citalopram in half this morning and didn't take the melatonin tonight and I have been in bed writhing and moving constantly for over an hour.

[hairyfairy]

If my rls is inherited, then there`s another reason to hate my parents! I`m such a loser in the genetic lottery!