what a time i.m having with augmentation

[shauntario]

Hello everyone
its been awhile since I have posted
im really having a rough time with my Rls
My sleep specialist had me taking Mirapex along with Neurontin for the last three months I was doing pretty good at first then these medications just seemed to stop working--
more and more involuntary movements in the day time especially in my arms the doctor put me on requip last week i was to take >25 mg---2 @ 5pm and 2 at 8 pm along with 4 neurontin--
my gp also prescribes me 1 .5 lorazapam and 1 baclonfen and 1 remeron---lots of drugs seems to me
I took the dosage of the requip along with all the other meds--- my arms and legs jerked so bad I hadnt slept for 4 nights-- oh my !!!! worst nights ever
even during the dayI still feel the uncontrolable urge to jerk and move-- Icalled my sleep specialist --
after three days the nurse finally called me back-- saying the dr wants me to now take 2 requip at 5pm and 4 at 8pm---
I did this last night and it worked pretty good--
now every time i take a pill--I am scared of what mY night is going to be like--- thoughts anyone???
The reason for switching to the requip is my doctor said it lasts longer-- but I have found with my RLS sometimes less works better-- I tried the less with requip 1 and 1no difference
i can also repeat the neurontin up to 4 when i can't go back to sleep-- doesnt seem to help
Sorry I,m going on sooo much--I feel very sleep deprived
With all this medication I should be zonked-- isnt there a doctor on the board-- i would like an opinion from him ??Please??
Thank s alot for listening

[sardsy75]

Hi Shaun

You have my sympathies on the rough time you're going through!

I noticed in your post that you've only just recently switched from Mirapex to Requip ... that's probably the cause of your trouble at the moment. Your body is getting used to the new drug and that can take a week or even more if you are a chronic case (as i suspect you are from all the drugs you listed) ... you need to be patient as it is a lot of trial and error when finding the right dosage and "mix" of drugs.

Most importantly though, you need to stop stressing!!! Worrying about how your night is going to be will only bring on an attack rather than let the drugs do their work and help you relax enough to get some much needed sleep.

Your doctor is right about the half-life of Requip ... it is a lot longer than the others; as is Cabergoline, which is the one i'm on. Keep at it, at the dosage your doctor tells you.

The lorazepam, baclofen and remeron should all assist you with relaxing and sleeping; take them at the right time and let them do their work. I know a lot of people don't like taking so many drugs, but for some of us it's something we just have to get used to in order to get those much needed zzzz's.

Check out the Southern California RLS Site at www.rlshelp.org ... there is a section there called "RLS Patient Letters" where you can write a brief letter and receive a response from a qualified RLS doctor.

After all that ... remember this ... take it one step at a time, one day at a time and most importantly, stay positive!!! You can fight this!

Sending you lots of positive thoughts and ((((hugs)))) from down under.

[shauntario]

Goodmorning
thank you Nadia for your words of encouragement---
this means a lot to me---
-I will try to stay positive--easier said than done--
stop stressing---I know I shouldn't stress--
I haven't found a way not to do that yet.
Any one going through this affliction knows it is pure HECK!!!!
I took the medication with the new dosage again last night---
it did make me rather nautious I must say--
Ii was rather relaxed till about 9 pm
after I took the second dose of requip-- then I was wide awake again-- my legs and arms did.nt start giving me fits till about 11pm then the battle began-
- after numerous exercises I finally settled in again
I am more tired than i was before i went to bed-- again
thank you for your caring responce
take care
shaun

[ViewsAskew]

Shauntario, I went through a similar situation when I tried to switch from Mirapex and Requip. It never worked for me, but I'm not sure why. I have two theories, but both are just cooked up in my brain and are not medical in any way.

Mirapex can be devlishly hard to stop. The body is used to it and when you stop it, RLS symptoms are greatly increased for 3-8 days. I mean greatly! Now, supposedly Requip can be directly substituted for Mirapex - meaning you can stop one and immediately take the other with no period of reducing or titrating doses.

But, I think there may be two problems. The first is dose. Doctors are finding it take up to 4 times the amount of Requip to work as it does Mirapex. The average is 3. So, if you were taking 1 mg of Mirapex, you'd need at least 3 MG of Requip. My doctor had me slowly increase, so I was going through the Mirapex withdrawal and the Requip wasn't enough to work.

The second problem may be that Requip and Mirapex do work on different receptors, D1, D2, etc. Mirapex is D2 and D3, and I think Requip is primarily D2, but am not sure. The point is that since Requip doesn't work on the exact same receptors, maybe there is a period of "withdrawal" that the brain goes through when you switch, making it hard, especially for people that have been on Mirapex for a long period.

I truly know how horrible you are feeling, as I thought I would be better off dead when I went through this. I ended up back on Mirapex because nothing seemed to work! I tried Requip, Sinemet (of course, instant augmentation), Neurontin, 3 different benzos, and Vicodin. None worked.

I was able to get off the Mirapex a few months later, by using methadone. It was rough, but not like it was that first time I tried. This is an alternative for you if your doctor will consider opioids. My doctor first tried propoxyphene, then Ultram, then Methadone. The other two weren't strong enough to get me through the withdrawal. After a couple of weeks, when the RLS is stabilized, then you can try the Requip again and see what happens. It just may not work for you. It didn't for me when I tried it again later, but obviously it works for many. If it doesn't, then you could be off Mirapex for a month or two and then try it again and see if it is effective again at a low dose. It was for me, but I couldn't deal with the side effects, but it worked and at about 1/8 the dose I had been on. Of course, all of this is just my ramblings about my experience, so you need to work this out with your doctor.

Keep in touch and let us know how it's going.

Ann

[shauntario]

Hello
I appreciate your responce---its good to know I am not the only one that has experienced this problem-
-I think your right about maybe going through withdrawal-
-I thought the anxious feeling and rapid heartbeat that I am experiencing was because my thyroid
or shall I say lack of throid was out of whack again--
yes I battle goimg from hypo to hyper
-I had RAI last May which destroyed my thyroid
so now they are trying to get my thyroid hormone level normal-- on top of everything else.
As far as getting opoids thats not gonna happen--I live in canada
and my GP won't even give me any pain medication for my Fybromyalgia -yep blessed wiyh that also--
my sleep specialist gives me the neurontin for the pain from RLS it does seem to help the fybro more than the RLS
any way thats about as good as I,m gonna get for pain--
the strongest pain meds i have ever gotten here is Tylenol 3--
cant even take that!!!!
although I do not understand about the receptors--I would like to read about it do you have a link I can research ?
I am taking the new dosage of requip 2@5pm 4 @ 8pm along with 4 neurontin--
seems to help till about 11pm
then my arms go in high gear--
I guess I need to switch times of dosage or somthing--
any ideas on this????? --
if I don,t take any meds early enough before the moving starts they don't work at all
thanks again for sharing
still struggeling
shaun

[ViewsAskew]

Shaun, I wish I could send you to articles about the receptors. I know the We Move gives the same info I did, but don't think they go into detail. Anyway, it's just a theory of mine - I didn't read anywhere that it could be the problem. It just sort of makes sense that if Mirapex is working on different receptors that when you stop it and start something else, that if the new thing doesn't work on the same receptors, you'd be likely to have withdrawal symptoms. You could probably do an Internet search on "Mirapex receptors" or "Requip receptors" and find out more.

Requip doesn't last as long as Mirapex - 4-6 hours vs 6-8 hours (if I am remembering correctly). It starts working a little faster, though - 1 hour for Requip to 1 1/2 to 2 for Mirapex. So, you might have to split into 3 doses - 2 an hour before it starts at say 5 PM, then 3 hours later a partial dose of 2 , and then another partial dose of 2 more just as you go to sleep. Of course, I'm not a doctor, but just thinking about what would make sense given how long it lasts. And, you need to make sure that your total dose is at least 3 times the mg of your old Mirapex dose.

I'm not saying opioids are for everyone or right in every situation, but it makes me mad and sad that doctors and the governments can be so pig-headed about them. Yes, they can cause addiction, yes, this can be a problem, but they are appropriate and if used correctly can make a huge difference in people's lives. I just wish more people would come to that conclusion and use them wisely.

I hope it gets better soon. It sounds like you are in a very, very awful place.

Ann

[Guest]

Thanks for the quick responce----
I will check into those receptors--it does make good sence to me--
to get advice from REAL PEOPLE is great!
I agree about the drugs --if they can give people like us a BETTER QUALITY OF LIFE so be it----!!!!!!!!!!!!!!!
I m gonna talk to my doctor on mon cause these feelings arent getting any better--
so anxious I could cry(if I could)
I wrote several months ago about feeling--emotionally numb-- and still do--I dont like it-- but---I cant help it---
- I guess anxious and nervous and stressed are all emotions-- so I should clarify that I do know what emotions are!!
The one Im having areal problem with is crying--- I so want to but the tears wont come---- any way
Thanks
shaun

[pdullea]

My neurologist believes that Requip must be spread over the entire day. He was right in my case. When I first went to see him I was on .5 at dinner and 1.0 at bed time, with little or no effect. He added .5 in the A.M. and .5 at noon, and the results were dramatic. Unfortunately, I can't tolerate that much of the stuff, but that's another issue. Don't give up on Requip yet. Ask your doc to let you try a monning dose and a noon dose. It may make the difference, if you aren't overwhelmed by the side effects.

[ViewsAskew]

Shaun, a woman on the Yahoo Cyberspace board has been posting about her husband trying to switch from Mirapex to Requip. He was on 3 mg of Mirapex. He couldn't do it, either. He is going back to see his doctor soon about it.

He doesn't see the doctor until the 25th, I think she said, but I'll try to remember to post what she says the doctor tell him. He is seeing Dr Becker in Dallas, someone who is one of the better specialists in the field in terms of knowledge.

Many of these drugs change how our brains work. Mirapex definitely changed how I felt emotionally. Maybe part of this is the drugs. I was shocked at how much it changed me; when I finally got off of it, it was like coming home after a long absence.

Ann

[shauntario]

UPDATE
Hello All
Just a quick update --my legs and arms are doing a little better
as long as I take the Requip before they get bad----
I think the idea of taking it during the day might help even more--I will suggest it to my sleep doc --if he doesn't -
-I ,m still not sleeping much better I tend to wake up several times during the night--
-i think i,m about over the withdrawel from the mirapex---I don't want to speak --too soon
i just wanted to let you know how I was coping---
Thanks again
Shaun

[ViewsAskew]

Thanks for keeping in touch. You have all my empathy - I was so miserable when I was going through a similar situation. I wouldn't wish that on anyone.

I think it was about 8 days after completely stopping the Mirapex when I suddenly felt much better. It was about 3 weeks before the RLS had stabilized completely and I realized I had much less of it.

Let us know what the doctor says. It might help the next person who is in a similar situation.

Ann