Clonazepam Tolerance Build-Up

[wesleepbetter]

Hi, I have PLMD without RLS as a 35 year old.
Eversince the onset of PLMD 2 months ago, I have had terrible sleep from insomnia, frequent awakenings, and chronic fatigue.

3 doctors I met previously didn't want to prescribe anything but Mirapex. I didn't want to take it because I read in this forum about the huge dangers of augmentation.

The 4th doctor I met prescribed clonazepam and this is going to be my 3rd night taking it. Lucikly I am able to sleep uninterrupted although during the latter half of my sleep I did get up with mild PLMDs.

Since mirapex and opiods are not options for me, I feel like Clonazepam is the only choice I have at the moment so I want to start off carefully.

1.
I am currently taking 0,25mg of Clonazepam right before sleep. How do I ensure my tolerance to Clonazepam doesn't build up after prolonged use?
Should I take it every once, twice, three times or more per week? I read in Doctor B's Blog, two days abstinence from 2 weeks is strongly recommended.

2.
What's next?
The last two months, I've been doing many things recommended by this forum - supplements to even IV protein shot, unfortunately to no luck (at least up until now).

So is that it? Basically we have to figure out and try hundreds of non-pharmaceutical approaches until we find 'the one'?

It is frustrating since all these many medications with long-term negative side effects only provide relief to the symptoms without addressing the cause of the disorder.

On a side note, I hope there is a forum as amazing as this forum that is specifically designed for those with PLMD without RLS. I respect and hope all the best for those going through RLS with PLMD but despite their similarities, I hope PLMD alone can be given more spotlight as I've noticed quite a handful of differences between them.

I hope someone with expertise and experience could shed some light and provide some glim of hope for me.

Thank you

[Rustsmith]

Clonazepam is the med that was used to treat RLS prior to the introduction of Mirapex (pramipexole). Its use today is discouraged whenever there is an alternative because there are indications that it can hasten the onset of dementia in those who are susceptible. But it is a very effective sleep aid (I take it as treatment for REM Sleep Behavior Disorder).

You shouldn't have an issue with tolerance to clonazepam for quite some time.

As for what's next, take a look at the document that appears with the link in my signature. That document tells you what your doctors should have tried before prescribing Mirapex. They should have done blood tests to check your iron levels and then prescribed gabapentin rather than clonazepam.

As for Mirapex, if your ferritin levels are high when you start it, many people get very long runs with Mirapex (years) before experiencing augmentation. The key is keeping your ferritin high and the Mirapex dose as low as possible for as long as you can.

Finally, please understand that 85% of us with RLS also have PLMD, but only 15% of PLMD patients have RLS. That has always confused me about why more research isn't done on PLMD. It is easily measured during a sleep study and so very common, yet almost no research is available other than the recent suggestions that it is a genetic subset of RLS.

[wesleepbetter]

Hi Steve, thank you for your reply. Hope you could also shed some light on my follow-up questions below:

1.
From what I have read online, Gabapentin also poses risk of developing dementia in the long-run.
And that it also needs to be taken on a daily basis as opposed to Clonazepam which can be taken intermittently.
Are you saying Gabapentin is still the preferred choice especially when they both have risks of developing dementia?
Also, does Gabapentin help with sleep as much as Clonazepam?

2.
Do you have any suggestions for sleep aid that has no risk of developing dementia?

3.
For Mirapex, I did try taking it for one day. However, that night I couldn't sleep at all as it made my PLMW (Periodic Limb Movements in Wakefulness) quite severe - meaning when I was in a calm state ready to sleep, the consistent limb movements prevented me from falling asleep at all.
Also I read somewhere that Mirapex augmentation could possibly lead to RLS for those with PLMD without RLS.
So those are my concerns. Do you possibly have any insights on this?

I guess there are two parts to address with regards to my condition - falling asleep + maintaining sleep with no sleep disruption.
Based on your experience and expertise, which is the preferred choice? - gabapentin alone vs. gabanpentin + mirapex, or any other mix?

Your valuable input is highly appreciated as it gives me a wider perspective and a more calculated choice for the long-run.

Thank you

[Rustsmith]

1. I have not heard about long term use of gabapentin leading to dementia, but it is possible. Gabapentin has been used for decades to treat a huge number of neurological conditions with diabetic neuropathy probably being the most prevalent. But it is the second tier treatment for RLS (after iron therapy) and is also used to treat neuropathy due to MS. My point being, there is a huge case history of gabapentin use, probably greater than any other neurological medication. If it leads to dementia, I would expect to have seen many papers on the subject.

2. There are a large number of sleep aids available these days. Some of the new ones work differently than the older ones (for example Belsomra). You don't see them discussed much here because most of them are ineffective when used to treat the insomnia that comes along with RLS. What that means for PLMS? I don't know. I used Lunesta for a while, but it was only marginally effective. Ambien (in very low doses) can be used occasionally, but most of us with RLS need something that can be used every night, night after night.

3. As for Mirapex augmentation causing RLS for those with PLMD. I haven't seen that, but it wouldn't surprise me much. Recent research is finding that augmentation causes permanent changes in the brain's architecture. That is why the dopamine agonists were moved to tier 3 and several research groups are working on meds to reverse the effects of augmentation (there is one med out in clinical trials right now).

4. As for what is the preferred mix, these days it would be gabapentin (or Lyrica or Horizant) alone simply to avoid the use of a dopamine agonist if not absolutely necessary. If I were in your shoes, I would investigate the use of the other sleep aids (Ambien, Lunesta, Sonata, Belsomra, etc). Clonazepam works great (and quickly), but I use it only because it is the only treatment for my RBD and because I already know that I am on the road to dementia (due to genetics, not drugs).

[wesleepbetter]

Thanks Steve.

Why is Gabapentin the preferred choice over Pregabalin?

Also, is additional sleep aid necessary provided that Gabapentin and Pregabalin help with sleep?

[Rustsmith]

Gabapentin is preferred simply due to price. A 90 day supply of 300mg gabapentin is about $10. A similar quantity of pregabalin is about $27. Pregabalin provides more consistent dosing, so some doctors prefer it for that reason.

As for an additional sleep aid, if gabapentin/pregabalin are effective for you, then nothing else is necessary. The catch for you is that gabapentin has a 4 hr half life, so you might need another dose in the middle of the night and it takes about 20 minutes to become effective.

[Stainless]

I have been on Clonazepam for over 25 years for lifetime RLS and PLMS. Started at 0.5mg now at 2 mg and neurologist added 300 mg Pregabalin 5 years ago. 10 years ago, over 6 months, I got off Clonazepam for a year and took ever increasing doses of Ropinirole for a year. I think I augmented immediately. It was a horrible year and I was advised to go back on Clonazepam. I quit because of a large Canadian study linking Clonazepam to dementia but they could not determine if it was causal. I later read a Washington State University (I think) study finding no correlation. I think the Ropinirole and other DAs really messed up my dopamine receptors. I consulted with an RLS specialist who agreed.

I had not read any correlation of Pregabalin or Gabapentin with dementia or any new studies about Clonazepam. Can you direct me to any?

0.25 mg of Clonazepam is very low, especially if not taking it every night, but you will slowly build up tolerance and it is hell to quit. I was on 3 mg for a year before I quit but they will no longer prescribe that much. I functioned very well for 15 years on Clonazepam. It knocked me out, I slept through the night, led a very active life and was never tired during the day. Still I would recommend trying something else. I used Gabapentin to get off Clonazepam and did not have trouble getting off after over 6 months to try every DA. I think I should have tried harder to stay on Gabapentin. Instead I complained I was not resting well and steered to DAs. Best of Luck.

[Stainless]

I wanted to add that I think lack of or sleep interruption is probably a large factor in dementia. I was told recently hearing loss (I have bad tinnitus) contributes. If these as well as clonazepam and pregabalin do I'm in real trouble.

[wesleepbetter]

I have been on Clonazepam for over 25 years for lifetime RLS and PLMS. Started at 0.5mg now at 2 mg and neurologist added 300 mg Pregabalin 5 years ago. 10 years ago, over 6 months, I got off Clonazepam for a year and took ever increasing doses of Ropinirole for a year. I think I augmented immediately. It was a horrible year and I was advised to go back on Clonazepam. I quit because of a large Canadian study linking Clonazepam to dementia but they could not determine if it was causal. I later read a Washington State University (I think) study finding no correlation. I think the Ropinirole and other DAs really messed up my dopamine receptors. I consulted with an RLS specialist who agreed.

I had not read any correlation of Pregabalin or Gabapentin with dementia or any new studies about Clonazepam. Can you direct me to any?

0.25 mg of Clonazepam is very low, especially if not taking it every night, but you will slowly build up tolerance and it is hell to quit. I was on 3 mg for a year before I quit but they will no longer prescribe that much. I functioned very well for 15 years on Clonazepam. It knocked me out, I slept through the night, led a very active life and was never tired during the day. Still I would recommend trying something else. I used Gabapentin to get off Clonazepam and did not have trouble getting off after over 6 months to try every DA. I think I should have tried harder to stay on Gabapentin. Instead I complained I was not resting well and steered to DAs. Best of Luck.

Hi Stainless, thank you for your reply.

Clonezapem knocked you out. What about Pregabalin? Does it also help with sleep? Sometimes I get aroused by sudden jerks which prevents me from going back to sleep.

Also, with Pregabalin, are you having good sleep without anu disruption?

What would be the starting dose for pregabalin?

[Stainless]

To tell you the truth I don't feel Pregabalin do anything. It was supposed to reduce the pain in the thighs and it may but it is subtle. I've tried cutting back and I can notice it interfere with my sleep. Since my issues are so bad and I don't have any real alternatives I keep taking it. I was going through a good phase, asked the neurologist to break up the clonazepam dose and tried lowering that. Same results, just made things worse.

With clonazepam and pregabalin I fall asleep fairly quickly but 2 or 3 hours latter I get up and have some difficulty falling back asleep. I can usually get back to sleep or when I have a really bad night and can't sleep by 2 am, I take a ACETAMINOPHEN-COD #3 or HYDROCODONE ACTAMIN 5-325 MG. Doctors give me just a half dozen to get me through 3 months which usually works. Try not to get yourself into a bind like I am. I really think the combination of medications and bad sleep will lead to dementia if I live that long.