Restless Legs Syndrome (RLS) Discussion Board

debbluebird wrote: Sat Mar 30, 2024 10:06 pm Oxy never worked for me if I took it more than a couple of days. My RLS would be worse. It was 5 mg

It's astonishing how different some of us are in our reactions to drugs.

ViewsAskew wrote: Sat Mar 30, 2024 11:21 pm

Brynmr wrote: Sat Mar 30, 2024 9:57 pm

ViewsAskew wrote: Thu Mar 28, 2024 6:29 pm

I have to take methadone approximately 7-8 hours before I want to be asleep (and I can STILL fight sleep even then). I usually take it by 5 PM to have any hope of getting to sleep by 12 to 1 AM. I took it at 6 PM last night and had to force myself to get in bed at 1:30 - and didn't go to sleep until after 2 AM.

My WED/RLS doc - who sees hundreds of us - even told me to take it later. I did it just so I could show him how horrible it was. After a week he told me to do what I usually do. LOL.

That's terrible if you have to get up and go to work in the morning. I don't mind it because I'm retired and don't have to get up at any given time. Of course my oxy dose is low (5mg) so in 3 hours I'm sleeping. Guess I'm fortunate in that.

Not all of us have the alerting thing. And it does seem worse with the longer acting/half-life opioids.

I wonder if the gabapentin I'm taking counters the alerting thing. I mean I could, and sometimes do go to sleep at 1:00 am. It's mostly I like doing things like painting or watching Netflix (with Beezie on my lap) til the wee hours of the morning. Have you tried gabapentin?

Not everyone experiences opioid alerting. I take methadone and gabapentin. The methadone causes alerting so I take it at lunchtime and then take the gabapentin at bedtime. By taking methadone at lunch, my alerting symptoms are gone by bedtime.

Brynmr wrote: Sun May 12, 2024 4:18 am

ViewsAskew wrote: Sat Mar 30, 2024 11:21 pm

Brynmr wrote: Sat Mar 30, 2024 9:57 pm

That's terrible if you have to get up and go to work in the morning. I don't mind it because I'm retired and don't have to get up at any given time. Of course my oxy dose is low (5mg) so in 3 hours I'm sleeping. Guess I'm fortunate in that.

Not all of us have the alerting thing. And it does seem worse with the longer acting/half-life opioids.

I wonder if the gabapentin I'm taking counters the alerting thing. I mean I could, and sometimes do go to sleep at 1:00 am. It's mostly I like doing things like painting or watching Netflix (with Beezie on my lap) til the wee hours of the morning. Have you tried gabapentin?

It did for me. But, it doesn't do well with the small bit of pramipexole I take. It makes for very weird and fractured sleep.

Hi Everyone -

Update to my July 2023 Post in this thread.

Previously, I shared that I take 5 mg of Oxy just before bed and an additional 2.5 mg in the middle of the night to manage my RLS. My symptoms not only affect my legs but also cause sensations in my torso and arms—it almost feels like a “sour stomach” combined with convulsions in those areas. Additionally, I experience a strange sensation in my head, similar to severe brain fog. I often feel lost and hopeless, unsure of what’s happening to my body.

In my earlier post, I mentioned that the RLS Care Center at Scripps in San Diego prescribed me 50 mg of Pregabalin at bedtime, but I had to stop due to severe side effects, including confusion, balance issues, and forgetfulness.

Currently, I’m back to taking 5 mg of Oxy at bedtime, followed by 2.5 mg in the middle of the night due to its short half-life. However, I’m now facing a new issue: Pill Esophagitis. This occurs when a pill doesn’t go down completely, getting lodged in my throat and affecting my ability to swallow or speak. It creates a terrifying sensation of my throat closing up, making it feel as if I can’t breathe.

For reference: What is Pill Esophagitis?

I initially thought I had found a solution by breaking up the pill with my teeth and eating a few spoonfuls of cottage cheese to help it go down. I also avoided drinking too much water to prevent nighttime trips to the bathroom. However, I still occasionally experience the sensation of my throat closing up, which is incredibly frightening.

Has anyone else experienced this? If so, how have you managed it?

This is all very concerning for me, especially as I’m now 57 years old. It’s frightening to think about how this condition may evolve as I get older.

Any advice or shared experiences would be greatly appreciated.

Not being able to breathe must feel very scary.

My sister-in-law and I both have the sensation of pills getting stuck (and we are both relatively sure that they actually are - it's not in our head, so to speak). They can be stuck for a while, but fortunately never more than 30-45 minutes. Instead of cottage cheese, I find that a thick Greek-style yogurt works well. It is thick enough to coat it and for my body not to react to it. I don't think mine is as much of a reaction as yours is, however.

Thanks @ViewsAskew! I'll give that a try.

Trophyman wrote: Wed Feb 05, 2025 8:36 pm Thanks @ViewsAskew! I'll give that a try.

Let us know how it goes.