I am halfway to my goal to get off Mirapex (every two weeks I cut 1/4 of a .5mg pill so I am now at .75mg). I have started LDN (began with 1ml and every 10 days I add .5ml so I am now at 2.5ml). I also add a toke of mj before bed. And I have been taking herbals to get rid of SIBO. I don't know if it is a coincidence, but I have not had even a twinge of restless legs in a while.
I just saw my gastroenterologist this week and he is not happy that I am on LDN. He has prescribed one or two 25mg pills of Hydroxyzine before bed, instead. Has anyone had any experiences with this med?
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libraryannie
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Its an antihistamine and lots on here have had problems with them as they ramp up the RLS. Would wait see what nightdancer or someone more knowledgeable says about them but my guess would be to steer clear, (although you will know very quickly if they are going to be problematic).
Hi Raffs, I did take one the other night along with my bedtime dose of LDN. I did not experience restless legs but I woke up and had to get up FOUR times to pee which is a much worse sleep than I have been used to lately! Not impressed.
I took atarax for the horrible itching from MS. It worked but they took me off of it because it's considered a dangerous drug for us old folks. Here's a link that lists other high risk meds. I'm tempted to be insistent about getting it for itching but I don't like the possible side effects. It's hard to get it in my head that I'm too old for some meds. BYW, it didn't bother my rls, probably because I took it earlier in the day.
Wow! Hydroxyzine really bothers me...I was prescribed the drug to help me sleep which turned out to be a complete oxymoron! It seems like something will work for about 3 nights and then boom! I’m in agony...so frustrating!
Thanks GratitudeFirst! I tried it a couple of days ago and oxymoron is the perfect description!! I woke up 4 times in the night!!
Hi, a couple of years ago I read report in a reputable journal which showed that although Hydoxyzine is an antihistamine and so in theory should make RLS worse there was a report of it helping a very few. I sent the article to my GP and asked if he would prescribe 'off licence' which he did. Sadly I wasn't one of those who it helps - that's rls for you!
Thanks Alison! I tried it and was wide awake 4 times during the night. Not for me either.
Alison again. I'm no good at knowing how to send links but have found the article by googling ' hydroxyzine in restless leg syndrome'. It was only 1 patient but a very striking response. The writers were in Rome, written 2010.
Hi, Alison, To include a link in your post for an article: hold your finger down on the article link in your Google search results for a few seconds until the little menu appears (if using a tablet or other mobile device), or right-click on the link (if it's on your computer). Then select "Copy link URL". You can then click in your post or reply (hold for a second, or right-click) and select "Paste".
I appreciate all your wise and compassionate posts!
It's good to know my posts are ok for others to read. You never quite know what effect they're having. I wish I had something good and hopeful to say most of the time. I like your name optimist. We have to try to keep that attitude going. Last night was truly awful for me with no obvious cause, no obvious dietary triggers, 3 baths, so was feeling pretty fed up but onwards and upwards! 1 coffee and a sleep from 7am - 10 am has helped, just getting through the night was hard! All I take just now is codeine if I'm beside myself and am still working on the ferrous bisglycinate along wiuth vitamin C just now - my current source of optimism!
Alison, I'm sorry to hear of your travails. What other options have you tried? Have you had iron levels tested? It's possible that oral iron alone may not be sufficient to get the ferritin high enough. How about other meds? I sense that you're steering away from DAs, which is prudent (although a low dose may be helpful, even a 1 mg Neupro patch, with its lower risk of augmentation). Have you tried any of the alpha-2-delta ligands like gabapentin, pregabalin, Horizant?
Thanks. Was having a moan this am. More chirpy again now as still legs for the moment. Took pregabalin for several years as discovered the RLS effect by chance before it was recognised when prescribed for neuropathy pain. Begged GP to keep prescribing. Effect wore off and side effects caused problems.
Currently ferritin is 88 & am trying the iron with vit c to see how high I can get it.
I don't fancy the DA's te augmentation. I'm pretty certain I augmented on pregabalin.
The potential for opiate addiction scares me ( I was a Dr ) so have stuck myself with once nightly codeine if get desperate which I usually do, a lot of baths, puzzles & a great deal of frustration! I don't dwell on it day time but the nights drone me spare & I count down the hours till 6 or 7am when I can usually get some sleep
It's life changing though isn't it? I don't go on holiday or stay with friends etc - pacing round others houses or running their baths doesn't really work!
I have great hope for an iron infusion appointment I am booked into for 2Nov. I am asking for it so I can raise my ferritin level to about 300 as is currently recommended by Dr Buchfuhrer and apparently the Johns Hopkins group. Have you tried an infusion or is there a reason why I should re-consider. I accept there is a small risk (one per million transfusions) of something serious going wrong but the possible benefits seem to out weigh this.
Apparently the risks of iron infusion are now really tiny. I just haven't got round to trying to source one as expect various hassles so still working on the oral iron. I need to give myself a kick!
Do let us know what the result is and wishing you all the very best
Thank you for responding wanman. I did take one the other night along with my bedtime dose of LDN. I did not experience restless legs but I woke up and had to get up FOUR times which is a much worse sleep than I have been used to lately!
Thanks Pippins! As you thought, although I did not experience RLS, I woke up (wide awake) 4 times during the night which I don't consider an improvement!
So sorry I wasn't clear. I started weaning myself off of three .5mg pills or 1.5mg Mirapex (Pramipexole) several months ago. I cut !/4 of a tablet every 2 weeks. I am now taking .75mg (one whole .5mg plus half a .5mg pill). How I WISH I was down to .375!!
Whats his problem with LDN?? Does he know what it is?? When i first started
treatment for RLS they gave me 2 types of clonazepam ...one was a quick melt...put in mouth it dissolves and you do not get tired. The hard type is good for sleeping...it worked great for a couple of months until i hurt my back. They put me on Norco
and after that the Klonazepam quit working. LDN is a low dose Opiod... At higher dosages of like 50 mgs they use to get folks off heroin.
One thing I did not know about the opiates is that it destroys your testosterone.
I use a bunch of stuff. You might try Kratom I use Bumble Bee....they have different types...the white will give you energy and keep you going...and the Gold Bali is good for sleeping. I wish i Knew about Kratom before i went on the Opiates. It does not affect your hormones like the Opiates. Good luck.
My RLS was not frequent anymore. No meds. Then I started Hydroxzine to help with sleep and anxiety. My restless leg syndrome has increased severely. It drives me to distraction. Is that one of the things it is prescribed for? If I stop it I will find some sleep aids herbal or homeopathic with no melatonin. (It makes me groggy during the next day. Does it have withdrawal side effects?
Yes. I stopped using it almost immediately. Best of luck finding a resolution. I am still on Mirapex .50mg. I can't seem to reduce any more but I refuse to augment every once in a while when my restless legs want more. It goes away in a couple of days.
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