Long Time Member, First Time Poster

[mailhotdw]

Restless Legs History

Hello everyone,
I am a long time RLS sufferer who has found that the advice at this forum very helpful and educational. When I go through difficult periods in my journey with RLS , I have found solace, comfort, and support from you all. Now I am again looking for your advice and support.
My RLS started to get more noticeable and disturbing my sleep in my 50s.
I started with the sleep Dr. who put me on Gabapentin and Mirapex then Ropinirole . I had great efficacy with these dopamine agonists but developed severe augmentation. I began seeing a neurologist in 2022 who put me on Horizant and Tramadol. I had a good response with these but eventually had increasing RLS symptoms. I started seeing the RLS specialist at Yale-New Haven, CT about 2 yrs ago.
I should mention that I also have mild – mod Sleep Apnea and have used a CPAP machine for > 10 yrs. I also had previously been diagnosed with a panic disorder in my late 20s and have been taking 0.5 mg Clonazepam for over 30 years. I also have BPH, and elevated cholesterol for which I take finasteride and atorvastatin.
As my symptoms continued to decline, the Dr switched me from Gabapentin to Lyrica and I was taking 300mg Lyrica and 150mg Tramadol at night. It took me 3-4 hours to get to sleep but I would always fall asleep and get 3-4 decent hours of sleep. Unfortunately, my evening symptoms continued to worsen so that I was unable to maintain any evening activities and spent the evenings rocking back and forth in my chair or rolling around on the floor, dreading the time when I would take these movements, that would be quite disturbing for most people to even witness, to my bedroom. This is my evening. Symptoms occur at the same time, every night, I can set my clock by it. Obviously, not a great way to live but those of us with this condition know, it can always get worse!
The Dr also began tapering down of the clonazepam over the last year with a goal to stopping clonazepam and starting Buprenorphine. I completed the washout and Dr prescribed Buprenorphine. This is the subinguinal (under the tongue) where you cut the pills into 4 and take only ¼ pill. I had a terrible night with only 2 hrs sleep the first night and no sleep the second. The Dr. stopped this and prescribed Suboxone, same thing, ¼ pill under the tongue at bedtime.
After taking Buprenorphine I have had little to no sleep, vivid dreams, panic, and fear which is crippling at times. I don’t know if this is related to the cessation of Tramadol, clonazepam, the Buprenorphine, or a combination. And I continue to have predictable RLS symptoms. I have gone back to the tramadol and Lyrica at a reduced dose, and I am quite literally afraid to take the suboxone, because the Buprenorphine was such a bad experience. Can anyone who has been on a similar journey offer any advice?
Thank you,
D

[Rustsmith]

I experienced something like that when I was abruptly taken off of tramadol. I experienced nightmares that were worse than anything that I can remember. One night, I woke up as I was in midair. I had jumped out of bed to escape the monster in my nightmare. Stopping tramadol also caused me to develop severe depression that was so bad that I ended up in the ER believing that I was having a heart attack. The doctors at the ER didn't diagnose my problem as anxiety, but they did perform a cardiac CT scan to rule out heart disease.

You didn't say what time of day you have been taking the buprnorphine. Many of us experience a side effect of opioids that we call "alerting". Doctors have a different term but essentially, instead of causing sedation, the opioid causes us to be wide awake. I take methadone and have to take it mid-day because I cannot sleep for eight hours after taking it.

Back to buprenorphine, your doctor placed you on it because that is the next opioid med used following tramadol. All opioids have different side effects. If buprenophine is causing unacceptable side effects, it is time to contact your doctor to discuss changing to something else. Often, methadone is the next step for treating RLS. But methadone presents challenges that you haven't experienced with tramadol or buprenorphine. Tramadol is an FDA Sch 4 med, burprenorphine is Sch 3 and all the rest are Sch 2. Doctors can only prescribe a 30 day supply of Sch 2 meds with no refills. That means that the doctor has to send in a new prescription and you have to go to the pharmacy every 30 days. This is a major hassle, for both of you, but those are the rules. The good thing about methadone is that it is dirt cheap compared to tramadol or buprenorphine.

[mailhotdw]

Hi Steve,
Your symptoms post-Tramadol sound very similar to what I have been experiencing.
I had been taking the Tramadol right at bedtime, but it was taking forever to kick -in.
I took Buprenorphine only 2 nights (also, right at bedtime 9- 10 pm) before the Dr. took me off due to these AEs and he switched me to Suboxone right away.
I start the Suboxone tonight. But I think I have this "alerting" for sure that you mention. Therefore, I think I will take the dose in the early evening. That makes a whole lot of sense.
Thx!
D

[Rustsmith]

Understand that Suboxone is a combination of buprenorphine and naloxone. Nalaxone is the drug that is given to reverse opioid overdose. The presence of naloxone may help with the side effects that you were experiencing, at least I hope that they do. As for alerting, the simple solution if it happens again with Suboxone is to take it earlier in the day. It is good for 24 hrs, so there is no need to take it at bedtime if it isn't helping with sedation.

As for tramadol, did you slowly taper the dose? The max dose of tramadol is 400mg/day. When I got off of it last time, I did a two week taper and had to get my GP to give me a small prescription of the smallest dose to manage the last few days. I didn't have any problems that time like I did with a hospital withheld my 200mg/day dose and just cut me off. Their excuse was that it wasn't in their formulary but my guess is that they didn't want to spend the money since they had to pay for all my meds.

[ViewsAskew]

I have no help to offer - just glad that you are getting help with it. It sounds miserable and we already go through so much misery as it is - we don't need more!

[mailhotdw]

Hi,
Thank you, this is helpful. I'm starting to now understand it is the Buprenorhine that is the active agent in both the Buprenorphine and the Suboxone with slightly different strengths and formulations. The Naxalone portion of the Suboxone is only significant if someone converts the pills and injects it.
Anyhow, I am feeling better after taking the Suboxone earlier in the day. I got a couple of solid of hours of sleep last night and the panicky feeling is lesser each day. Fingers crossed, I am getting through this transition.
My main worry is that it is the former Panic Disorder that I had been taking Clonazepam for so many years rearing up again. One step at a time.
Stay tuned and I will give an update in a few weeks!
D

[ViewsAskew]

Hi,
Thank you, this is helpful. I'm starting to now understand it is the Buprenorhine that is the active agent in both the Buprenorphine and the Suboxone with slightly different strengths and formulations. The Naxalone portion of the Suboxone is only significant if someone converts the pills and injects it.
Anyhow, I am feeling better after taking the Suboxone earlier in the day. I got a couple of solid of hours of sleep last night and the panicky feeling is lesser each day. Fingers crossed, I am getting through this transition.
My main worry is that it is the former Panic Disorder that I had been taking Clonazepam for so many years rearing up again. One step at a time.
Stay tuned and I will give an update in a few weeks!
D

So glad to hear it is going better for you. I can imagine how disturbing these feelings would be. One step at a time, indeed.