Is anyone else still on clonazepam?

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Stainless
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Re: Is anyone else still on clonazepam?

Postby Stainless » Sun Jun 04, 2017 1:16 pm

Badnights you are right, not phantom pain as I have all my limbs. I was trying to describe a pain without an obvious cause other than rls. Luckily I retired before this phase of the disease started so the impact on my life is less. Up until a few years ago it was just a strong urge to move my legs and clonazepam allowed me to sleep well with no hangover. I now think I probably should have kept quiet about my concern about the benzodiazepine but that is water under the bridge. My doctor has been very cooperative but I never thought that changing meds might just make everything worse even after returning to clonazepam. When I quit clonazepam I had a sensation of freezing feet and knees for many months that I've read is a hallucination. I assumed the pain was the same thing. I'm not sure if the gabapentin does anything for the pain or just knocks me out. Likely the latter.

fuz_mind
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Re: Is anyone else still on clonazepam?

Postby fuz_mind » Fri Jun 09, 2017 11:03 am

badnights:

i was very surprised too :)

badnights
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Re: Is anyone else still on clonazepam?

Postby badnights » Sun Jun 11, 2017 11:47 pm

I never thought that changing meds might just make everything worse even after returning to clonazepam.
This disease is so weird.
One thing that's hard to avoid and completely unproductive is worrying about the future. Assuming the disease will get worse because that's what the medical descriptions say, but it turns out that other studies have discovered that remission is actually common. Worrying about how you'll survive the next 20 years when you have no idea if the disease will be better or worse in you in the next year, let alone 5 ... or 20. That said, I spent 8 years after my diagnosis worrying about my future. Some things are easier said than done!
Beth - Wishing you all restful sleep tonight
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leggo_my_legs
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Re: Is anyone else still on clonazepam?

Postby leggo_my_legs » Fri Jun 30, 2017 2:55 am

I just started clonazepam. It seems to be providing some marginal benefit but not considering it to be a long term solution.

fuz_mind
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Re: Is anyone else still on clonazepam?

Postby fuz_mind » Sat Jul 01, 2017 3:39 pm

leggo_my_legs wrote:I just started clonazepam. It seems to be providing some marginal benefit but not considering it to be a long term solution.


yes because of addictive effect; but it did help quite a bit when my rls was bad

hang in there:)

Stainless
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Re: Is anyone else still on clonazepam?

Postby Stainless » Sun Jul 02, 2017 1:46 pm

So Fuz, your rls was bad, you took clonazepam for a while, things got better and you got off it? What do you do now for relief?

Leggo, I would explore all other avenues before your body gets too dependent on clonazepam. Then taper off very slowly. I swore I would never go back after what it took to stop, but here I am.

ViewsAskew
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Re: Is anyone else still on clonazepam?

Postby ViewsAskew » Sun Jul 02, 2017 3:47 pm

Stainless wrote: I swore I would never go back after what it took to stop, but here I am.


Yeah, been there, done that!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

yawny
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Re: Is anyone else still on clonazepam?

Postby yawny » Sun Jul 02, 2017 4:11 pm

Leggo, my symptoms seem similar to yours, and before I knew that I had this condition, I took only xanax before bed every night and got relief. The benzo would knock me out and I didn't notice my symptoms. But xanax didn't last very long and I got around 4-5 hours of sleep. Not much but so appreciated when you otherwise can't sleep. I did this for months while I waited to get in to see a sleep specialist. During that time I discovered medical marijuana and it became my sleep medication as I tapered off the benzo. The withdrawal was uncomfortable but short probably because I was on the benzo for a short time. In contrast, my mother was on clonazepam for years and has been trying to come off of it since 2/2016. On a completely different subject...because our symptoms are similar, I'm wondering if you've tried progesterone cream? It has improved my sleep tremendously.

fuz_mind
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Re: Is anyone else still on clonazepam?

Postby fuz_mind » Tue Jul 04, 2017 5:58 am

Stainless wrote:So Fuz, your rls was bad, you took clonazepam for a while, things got better and you got off it? What do you do now for relief?

Leggo, I would explore all other avenues before your body gets too dependent on clonazepam. Then taper off very slowly. I swore I would never go back after what it took to stop, but here I am.


i'm now taking 1 tab at night (previously up to 3 tabs) because i'm in the process of cutting down on my ropinirole. If there is pain, I will add on tramadol on a need to basis; but the plan is to get off it again. :)

Gaelyl
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Re: Is anyone else still on clonazepam?

Postby Gaelyl » Tue Jul 18, 2017 3:09 pm

I have been on 3 mg clonazepam (Klonopin) for several years. For me, it has been initially used as an anti-anxiety drug...the one advantage is it has a very long half life so it doesn't experience much in ups and downs as it wears off. I do know when I have been properly weaned, I definitely have more issues with rls.....But it also counterbalances the drug seroquel that definitely makes rls much worse. So Klonopin & methadone have kept my rls quiet for a long wile. However, it does not make me happy to be on 2 controlled drugs like that.

leggo_my_legs
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Re: Is anyone else still on clonazepam?

Postby leggo_my_legs » Tue Aug 01, 2017 3:03 am

Thanks for the progesterone idea, Yawny. I had no idea that could help. I'm post-menopausal, would it help anyway? I think some time ago you had also been suggesting Baclofen which I hadn't looked into yet.

O how I wish I were brave enough to try medical MJ!!! Still too concerned about the feds and work related issues. I bet it would really help me though.

My use of the clonazepam right now is kind of haphazard. I take it every once in awhile to take a break from the Norco which I am back on (and is working temporarily since I took the break).

The marginal benefit from the clonazepam wore off pretty quickly, like after a week or so, but I can get away with taking one every once in a while and having it help a little.

Polar Bear
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Re: Is anyone else still on clonazepam?

Postby Polar Bear » Fri Aug 04, 2017 11:45 pm

Well, as of my prescription of today I will soon be off my clonazepam. It was only a very small dose at .5mg at bedtime and I never felt that it was of great sleep benefit and didn't want to increase it.

I had a medication review today with my GP and as we discussed my general health GP said he didn't want me taking more than the occasional Ibuprofen, for two reasons = first is that I have a gastric problem (yes I know doctor, but just sometimes the need for relief from arthritis/fibromyalgia supercedes the gastric issue). Secondly, that there are issues with Ibuprofen and strokes/heart problems.

At my instigation we discussed the Clonazepam, given the press coverage about it being linked to Alzeimers and also not much of a sleep aid (for me). GP said that he'd like to go back to the amitryptiline to replace the Clonazepam. Now, I previously took myself off it because of next-day-fogginess but GP has suggested taking the amitri earlyish in the evening. Also that the amitri would benefit my fibromyalgia, and perhaps remove the need for too many visits to the Ibuprofen packet. Time will tell, any fogginess and it'll be bye bye amitri.

When I asked Dr should I taper the Clonazepam he reckoned that at such a low dose as .5mg it may not be necessary. However - with my remaining clonazepam, I will half the tablet, and then quarter, and then alternate...... and do a wean off of a sort.
Dr has said try 10mg amitri for a week and if I tolerate that ok, then up it to 20mg nightly.

We shall see what happens with the coming off Clonazepam and the restart of Amitri.

Am I expecting sleep ?? Hmmmmm.....
Time will tell, Probably at 2am - 3am - 4am - :crazy: :crazy:
Betty
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badnights
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Re: Is anyone else still on clonazepam?

Postby badnights » Sat Aug 05, 2017 2:52 am

I just started trazadone as a supplement to my half-tab (3.25 mg) zopiclone, as an alternative to increasing it again to a full tab. I tried trazadone before and wasn't impressed, but it was years ago and I don't think I gave it a fair shot. I've been taking 50 mg with the zopiclone and it seems to be enhancing sleep maintenance as well as making me drowsy for bed. So far, no next-day effects.

I hope the amitryptiline has the double-whammy effect your doc expects. I forget why you stopped it in the first place. Was that the one you were taking as an AD?

I think you're wise to taper, why take the chance, since the suffering is so severe if there is withdrawal and whether there is does not seem to depend on dose.
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: Is anyone else still on clonazepam?

Postby Polar Bear » Sat Aug 05, 2017 9:47 am

badnights - I had previously tried just about all of the different sleeping aids. When I was using zopiclone it was at a higher dose than you are now taking. Nothing ever seemed to have a good effect. Any way, ended up on the Clonazepam which also didn't have much effect. The dose was low but I was afraid of it, of how difficult coming off it might be. Perhaps a higher dose would have worked and it didn't get a proper chance.

It's great that you are having no next day effects with your regime.
The next day effects is why I stopped the amitryptiline before, I wasn't taking it as an AD,(I take a low maintenance dose of 10mg Citalopram) but as a sleep aid. I had been previously taking amitriptiline for months, can't recall for how long and it was a couple of years ago, my days were in a fog and my brain was never clear or sharp. One day I said No More.
Not sure how it might be different this time but my GP says it takes a few hours to kick in and to take it about 3 hours before bed. He seems to think this will avoid the brain fog.

Last night my Clonazepam was halved to .25mg plus 10mg Amitri.
Is it coincidence that I slept from 2.30 am - 9.30 am, that's a 7 hour stretch that has never before in my memory been attained. I find it hard to believe that it was successful meds - but hey - I'll take whatever I can and we shall see what the next week or so brings.
Betty
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badnights
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Re: Is anyone else still on clonazepam?

Postby badnights » Sat Aug 05, 2017 11:15 pm

geez, I hope it was the meds. Then you'll have an answer, of sorts, to the sleep problem.
Beth - Wishing you all restful sleep tonight
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