Hope someone can help me with my r l s can't put up with much more
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Restless legs
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Henshaw241241
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Hi Henshaw- sorry to hear your distress. Could you give some more information on your condition.
What medications have you tried so far, and what are you on now-make and exact dosage. Looking forward to hearing from you soon.
Cheers.
I have been on repinrol now the doctor has put me on Gabapentin regards 100 mg I can't put up with much more been up all night
Thank you
Before I would suggest ANYTHING, we need a lot more details. We do not know you, or your history of RLS, other conditions you may have that would preclude from using any other meds for RLS, etc. Everyone is so different, it depends on if it is primary RLS or Secondary RLS on how to treat and so on. It would help us to help you if we know more, the doses of your meds, how long on them, did they ever work, and how long have you had RLS? and so on. 
It does seem that for most folks, Pramipexole is the most successful medication for RLS. The main problem with this is the awful withdrawal symptoms that you're likely to get when you've had enough of the stuff and want to stop using it.
I tried to wean myself off Pramipexole which I did but this left me with very vigorous intractable RLS, Much worse than I had in the first place.
I would expect that Ropinirole, also a Dopamine agonist, would leave the user with similar withdrawal symptoms in his wake as with Pramipexole.
More and more , the specialists do not use dopamine meds for first line treatment. I am getting less and less people who cannot use these meds at all, either for serious side effects or dopamine just does not work for them. In my groups, the main subject every day is how to get off of the dopamine class of meds. Every single day.
If you have been on the Ropinerol for a while - it's a dopamine agonist- you possibly were getting augmentation (symptoms getting worse ) and the doctor is changing you onto Gabapentin at a very low dose to start with. This can be increased with your doctors input quite quickly, assuming that you have no reactions. 900 at night would not be excessive. But you have to endure the change- if you came off the Ropinerol cold turkey , then you will be surely suffering. Ask your doctor for help urgently at this time- Tramadol or Valium would be helpful. For about a week - depending on how much Ropinerol you were taking.
This phase will pass- and hopefully you will get to a dose of Gabapentin that eill give you relief.
Hang in there, and go see your doctor or AE asap.
Cheers. And good luck.
Thank you the doctor put me on Gabapentin I hope they work I have been on them for 1 days I'll they work do you no thank you for your help Tony
Yes -the Gabapentin works for most people - but everyone is different. And you will have to get up the the tight dose for you.
If you are taking magnesium - do not take it at the same time- leave at least three hours between the two!
Gabapentin does not work for "most" people, but it does help a lot people. I have people, including myself, who just cannot take it, for the side effects or for the fact that we are all different and what works for one person or several people, may not help the next person. all we can do is try it and see. For me, it was an epic fail, and for some they get along very nicely with it.
Why can't you take with Magnesium?
Apparently magnesium locks up Gabapentin - it is actually used to help titrate down when coming off it.
It should be ok to take separately given 3hrs.
• in reply toHenshaw241241
Hi Henshaw, it sounds like you are having augmentations from the ropinerole, taking 100mg of Gabapentin will not help with the augmentation sorry to say. Have you stopped taking the ropinerole.? Gabapentin takes a few weeks to build up in your system so you will not get any relief yet. But i am more concerned with whether you have stopped the ropinerole. What dose of the ropinerole were/are taking..? 100mg of Gabapentin is very very low.
Gabapentin takes a while to build up in your system. it is not a med that works like taking an aspirin for a headache, it take 4-6 wks to get the level of this medication up so it will help, you, if it is going to help you.
Thank you Tony
I agree that Tramadol is excellent for the changeover between DA's or Gabapentin. I stayed on Tramadol after everything else stopped working and have RLS only on a few occasions now (when I misbehave!). Good luck!
Oh my goodness, yes Tramadol is wonderful. So far its a life changer for me. I pray it continues to be. I take it about an hr. before bed. Its worth the try .
Does it give you nightmares? Sometimes I lay awake after taking it.
Hi John how many Tramodol a day do you take for rls ,do you have anything else,I have been on the patch about 2 months and 1 Tramodol ,things not to bad but not very good I never seem to have many good nights on the trot ,well that's how it's going to be I suppose,how are you doing xx
I was on 2mg patches when they stopped working and now am on 2 x 5mg Tramadol. I take one with my meal between 7 and 8 and one when I go to bed. I get insomnia but put up with it. Most nights no RLS but if have big meal, late meal, spicy food, active evening, more than 1 glass of wine it triggers and I have to get up and read for half an hour.
Sorry to seem thick John but don't you have patch now and are you just on Tramodol did you mean 50 mg thanks x
Sorry that should be 2x 50mg Tramadol. Ropinorole, pramipexole and patches all stopped working for me after a few months. I tried them again but no luck. I just use Tramadol now
Good luck,
John
I understand completely! I also suffer from RLS! If anyone has a solution I want it!
G'day, Midar, I'm one of the lucky ones, I take 200mg of tramadol a day for a back problem so I don't suffer much pain from the RLS, just the twitching & tingling which makes it impossible to sleep. Since having swollen legs[Edema]
I've been using a Revitive massager. I use it first thing in the morn for the swelling then found if I give it a go late in the afternoon, my RLS lets me lie down comfortably. Sometimes I forget the afternoon hit but I get out of bed & give it 15 minutes on the Revitive & everything is good. Like people say, everyone is different but someone might, like me, get relief with the Revitive. Best of luck, Johnny.
Hi Henshaw,
Having read your reply where you gave more details of your situation, I agree with the others so I won't state them again. I'd say that these doctors have a limited number of resources at their disposal for use when treating RLS, and I am trying to find alternative ways to help control it whilst still taking the medication they've prescribed. Have you looked for ways to minimise yours? I found that keeping my legs cool helps to prevent the symptoms started too soon (perhaps an hour or two), but at least this means I'm not doped up to the eyeballs all the time.
I also found that some exercises involving laying down and doing cycling for a while (rather than having to walk a marathon) eases it, again, for an hour. Other things I have found useful involves laying on my front to sleep as I found my legs in a position where my knees are facing the ground can provided some relief if I can keep it up for a few minutes, after which I can find myself drifting off, but it doesn't always work. You'd need to try things yourself as doctors don't seem to value these approaches.
Something I would not be without is an electric mattress cooler. If I have to try and sleep without it I'm up and down Like a yo-yo all night. Try some things out, I found myself finding out about these things to pass the time when not sleeping.
Lindy
Dear Henshaw241241,
Like you, I have intolerable RLS. I have mine 24/7. Sometimes I eat standing up, do not watch TV or go to the movies. Even reading books can be too difficult. The only way I can lay down is if I take my requip one hour before bed. Otherwise, I never lay down.
Recently, a doctor (chiropractor) friend of my daughter recommended taking magnesium caltrate. I purchased this from a health food store. Since I have only taken it four nights so far, I cannot tell you if I have positive results.
I do know how difficult it can be. Just hang in there. Surely, they have to find a solution. Also, can your general doctor prescribe a medication for anxiety and or depression? I do take pills for both. I believe it helps me immensely with dealing with this illness.
If you do find something to work, let me know.
Good luck, Smile. I believe we have to look at the beauty in this world; for there is so much.
Beware of any anti depressants with RLS! Check out the lists on RLS.org (?) site.
I saw something on the health page of the Daily Mail about some contraption worn on the foot that stops rls. The trouble is that it costs several hundred pounds!
• in reply tohairyfairy
That foot thing is on here on several posts. Go and look.
It was also in the mirror and the sun, hairyfairy.. Type in foot wrap in the search box at the top of the page if you wish to read threads about it
Hi, I have depression and RLS etc so I am on a lot of medications, which makes it difficult for my doctor to prescribe anything else for me. At the moment I find Clonazepam helps to calm me and reduce the RLS but both go up and down so I would like a cure too. It seems to be genetic as several females in my family have it. Is this usual and is it generally more prone in women than men?
Thanking me know what you I am on Gabapentin 100 mm been on them only 2 days I wish there was something for shore I can't put up with much more it was nice to receive the email let me know if any. Luck Tony
My mother takes prednisolone to help her but she needs it throughout the day as I do with my clonazepam. I only got my treatment as I told the doctor that I would cut my legs if they did not stop, so he gave me pills.
thank you I no how you fill and me we wouldn't have any more if we had are are legs cut off ha ha I have been on rapinirole for a fewyear now but they don't work now I don't get much sleep last night'sno sleep and again to night it looks like walking round the house and outside Yours Tony x
I have mental health problems too so I do cut myself. That is why my doctor took me seriously because he knew I meant it.
Hope this can help you I am on Gabapentin and they have made a difference I was on Rapinirole for a long time now they have put me on Gabapentin good luck undertaker
gag reflex
Can
Hello Henshaw241241 I know what your suffering with it is hell was hell.........I couldn't sleep for month's and of course when you cant sleep, i couldn't focus on doing anything like reading , so i turned to eating and that was for months but my dr finially gave me something for it which is ROPINIROLE 25MG and soon after I could get some sleep I do take them early in the night about 9 o'clock thank god that pain is over
Hi is it it terrible I even get sometimes when I am driving I have been on Gabapentin 100 information 1 week sometime you fill like doing something bad I haven't had any sleep for 2 nights
Undertaker
Po213tz
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