Just prescribed Clonazepam - what should I know?

[leggo_my_legs]

Do not recommend klonopin. Long half life means that each time you take it you're in a little deeper. Very hard to get off if you're on it more than a few weeks. My former sleep MD gave it too me and I'm very lucky I didn't try it for long.

I've had a horrible time with gabapentin, been tapering longer than I was actually fully dosing the drug--6 months and started tapering 10 mos ago. I would only recommend low dose opioid, hopefully you can find someone to help..

[pab628]

I started having RLS symptoms about 10 years ago. My PCP put me on Ropinirole (I think 1/2 mg). When said doc retired, he referred me to a neurologist. He gradually increased Ropinirole to 3 mg. Then added 100 mg Gabapentin. New PCP said "Oh, that's a baby dose and eventually increased to 600 mg. Then a dermatologist increased Gabapentin to 900 mg (for separate unrelated issue). Eventually neurologist introduced Clonazepam at 1/2 mg; then 1 mg. I have decreased to 1/2 mg. All of these, with the exception of Ropinirole, are only taken at bedtime to aid with sleep......ahh the elusive sleep. I want to decrease the Clonazepam to 1/4, and then eliminate. I tried 1/4 for a week and felt I awoke even earlier, so went back to 1/2 for awhile. I also take herbal Voltarian Root to aid sleep. I was on 3 1/2 mg Ropinirole and have weened my self back to the 1/2. It was awful!! I know I probably take too make substances (and me who never took anything for 65 years), but without sleep, my RLS during the day is even worse. I also massage Lavender essential oil into my legs and arms when it starts up. But, on a bad day or bad night, nothing works. I wish I had the answers, all I know I would be careful with Clonazepam; certainly wouldn't start with high dose. I don't think I have any issues with Clonazepam, but maybe I don't recognize them:). RLS sure had changed my lifestyle. Just turned down a European trip, because of the long flight.

[meiatflask]

UPDATE from OP:

After only a few weeks, I stopped taking Clonazepam. This was entirely due to the side effects. Seemed to be ok on RLS symptoms (but not as good as ropinirole or gabapentin). But the mental health side effects- depression, anxiety, anger. Wow, it made me a different person and I could see the affect on my family. So, I am done.

Back to square one on finding a solution to relieve the symptoms and yet not ruin my life with side effects. I still need to get my iron rechecked after adding the oral iron, and perhaps add B12 per recent recommendation.

To everyone who has posted comments, suggestions and recommendations: I can’t thank you enough. Your experience has been invaluable.

[QyX]

UPDATE from OP:

After only a few weeks, I stopped taking Clonazepam. This was entirely due to the side effects. Seemed to be ok on RLS symptoms (but not as good as ropinirole or gabapentin). But the mental health side effects- depression, anxiety, anger. Wow, it made me a different person and I could see the affect on my family. So, I am done.

Back to square one on finding a solution to relieve the symptoms and yet not ruin my life with side effects.

I am glad to hear you were able to stop Clonazepam in time.

Due to severe insomnia, many patients often feel forced to take drugs like Clonazepam longer than it would be wise to do so. I am very happy that this forum was able to provide you with useful information about Benzodiazepines and therefore helped you with avoiding a long and nasty withdrawal period.

So if possible, I would see if you can obtain an opioid prescription. You don't need at high potent opioids like Oxycodone or Morphine at the beginning.

If possible, I would ask for a prescription for the opioid "Dihydrocodeine" since it is the strongest of the weak opioids and can be prescribed for longer than 30 days with refills. Dihydrocodeine is twice as strong as regular Codeine and Tramadol and about 1/5 as strong as Morphine. So even when it is considered a weak opioid, it still has major opioid effects and can be used in higher doses than Codeine alone.

But even when you only can get Codeine or Tramadol for now, it is still much better than not having access to opioids.

For severe cases of RLS, opioids for us are the same as antiepileptics for people with epilepsy. So don't hesitate asking for them. There is plenty of evidence backing up the use of opioids in RLS and since you already have tried the most common alternatives, it also would be the right thing to do from a conservative point of view. If necessary, go look for a different doctor and print out all the articles and evidence recommending opioid treatment for RLS. The most evidence you will find is for Oxycodone, an opioid twice as strong as Morphine when giving orally.

Also: I would already start pushing for an iron infusion since it is the treatment who can possibly have the most positive life changing impact.

All the other treatment options are only about symptoms and unfortunately oral iron treatment doesn't seem to do much for us.