Riding the Big One (RLS 24/7, Hanging Ten)

[Dr.Placebo]

Deb, I would love to be on buprenorphine. I am convinced it is the best drug for me. but unless I can buy it at Target without a prescription, it will be a tough job getting it. there is hope though, since I have an appointment with Dr. Winkelman at Mass General in boston--the doc who co-authored all the Mayo clinc Proceeding articles and runs an opioid registry for RLS. I will probably have to go through a lot of chi chi before he will prescribe buprenorphine for me but we shall see. I just need to stay on top of the wave until I can see him in 2 months, and 2 months feels like an eternity when each day and each night is so hard.

[Rustsmith]

In the questions section of the latest Nightwalkers, there was a question that dealt with the use of Suboxone for RLS. Two doctors provided replies (Dr W was not one of them), but both of them said that they are starting to lean toward the use of Suboxone as their first line opioid instead of methadone. They didn't give much justification for this, but I suspect that they reduced regulatory headaches for the doctor's staff (Sch 3 vs Sch 2) may play a part in that decision as well as the even lower risk of causing Opioid Use Disorder.

[debbluebird]

The only reason I am taking buprenorphine is that I can't get methadone. Doctors in Albuquerque won't prescribe opioids for hardly anything.
The main difference for me is the buprenorphine takes my RLS away but I have more side affects with it.
So far I'm only taking buprenorphine every 3rd night. On the first night I don't sleep but about 6 hours. The next night without it I sleep a lot. Last night was 13 hours. There's no consistency.
Frankly I'd rather take methadone.

[SquirmingSusan]

There are days when I wonder how this disorder and the sleep deprivation it causes doesn't kill us. I would love to know how many people attempt or complete a suicide because they can't get treatment. I'm not there, but have been having a rough time. Iron infusions help my RLS tremendously, but I can't get them until my ferritin goes below 30. My neurologist says he can't prescribe methadone anymore (even though he prescribed it for years). I'm planning on having my doctors add some of the information from this site to my medical records, with explanations as to why they can't treat my refractory RLS.

Years ago, before I was diagnosed with narcolepsy as well as RLS, I tried to get in to Mayo in Rochester, but they asked me why I thought I was so special that I needed treatment there. That's when I flew out to see Dr. Buchfuhrer. I keep thinking any day I need to make that call and fly out to LA again. Or sign back up with the pain clinic I used to go to when I first augmented on the DA's. Monthly appointments and peeing in a jar don't appeal to me, but they did treat me well.

For now, I'll keep struggling on with kratom and it's cousin, hirsuta.

[debbluebird]

I hear you Susan. Our lives can be so difficult at times. For me it hit and miss.

[Polar Bear]

I am grateful that my RLS is reasonably contolled although definitely still issues. When particularly difficult I add some Kratom in the evening but not convinced it does a lot, possibly because my dosage of two teaspoons is not sufficient.

[SquirmingSusan]

Betty, 2 teaspoons is a fairly good dose of kratom, but it depends on the variety and the time of year it was harvest and whether it was rainy season or dry. Since my RLS has been so bad lately, I use the 50 to 1 extract, and add an 1/8 teaspoon to my regular teaspoon. But it takes an hour for it to kick in, then only lasts another 4-5 hours for me. When my ferritin is high, I only need a teaspoon at night. I'm glad your RLS is mostly controlled. It's a horrible disorder.

[Polar Bear]

I definitely haven't found kratom to help with sleep. However with having other painful medical issues it's often difficult to know what way to turn.
I'm glad it works for you.

[EeFall]

I am so fortunate that my Suboxone is still working after all of these years.

I take the sublingual 4mg but I split it up into 4 rectangles and put them in two contact lenses plastic boxes. So each one is in an airtight container. I take them at 8:30 am, 12 noon, 6 pm and 7:40 pm when I remember to take them on time. Lately though I even have an alarm on my smartphone that warns me 5 minutes after I should take them, as my Amazon Alexa tells me to take them at the correct time. When I do get really depressed I take Kratom and it snaps me out of it on the same day. Nowadays I only take it maybe every other month.

It is amazing how I do forget though and it ticks my wife off for sure but really it can mess my whole day up. If I don't take them I start yawning like crazy and become depressed and of course jumpy. Sometimes it is because I am working outside or not at home. Other times I just plan forget right after the alarm goes off. One of the hazards of getting old.

My hearing is not what it used to be but I still listen to all kinds of music and enjoy it. I actually find it funny when I know I have heard something incorrectly. Deaf humor lol. I have been retired now for almost 5 years.

One very cool thing I purchased was a Meta Quest 2 VR. It is sooooo awesome. I have been doing Beat Saber almost everyday. Another program called Wander can take you to any place (where google has been) and I was awed when I went and saw the Egyptian pyramids and the Mayan pyramids too. Just like being there. Virtual reality is so cool. I almost got sick the other day riding a VR rollercoaster

Anyway I am still riding the big wave! I think I will see if I can go VR surfing!!! I miss you guys.

[Polar Bear]

I can hardly believe you are retired 5 years and can remember well how you struggled to keep working. You appear to be managing pretty well ..... When you remember to take your meds on time..... :
Ride the wave.

[EeFall]

I can hardly believe you are retired 5 years and can remember well how you struggled to keep working. You appear to be managing pretty well ..... When you remember to take your meds on time..... :
Ride the wave.

Now my unofficial job is fix everything around the house that breaks down. I just fixed the dishwasher yesterday and the main line for our sewer clogged up the other day. I refused to pay a plumber so spent 3 days fixing it and purchased a drain snake so I can now always fix it myself. Thank God our place has a clubhouse where there was a restroom or my wife would have not been a happy camper. Lol

[Polar Bear]

Oh the dreaded sewer blockage. We also have drain rods and various bits of kit to save paying tradesmen where possible.
Well done. Isn’t there a satisfaction with these accomplishments.

[EeFall]

Oh the dreaded sewer blockage. We also have drain rods and various bits of kit to save paying tradesmen where possible.
Well done. Isn’t there a satisfaction with these accomplishments.

Yes! By the way the first 45 rpm record I purchased was Satisfaction by the Rolling Stones. Man I am old.

[Yankiwi]

You can learn to fix most easy household problems by watching YouTube videos.

[debbluebird]

It's great to hear from you. I started taking suboxone/buprenorphine last summer. I take a 2mg film and cut it up into 4 parts. I only need to take 1 of those 4 parts. I take it at 2:30 pm. I have an alarm set. I also carry some in my purse. I found that I had to take it that early so that I could go to sleep and not be awake all night. I hate that alertness. Anyway, it's working out most of the time. I still take gabapentin 1800mg and I get steroid injections in my lower back every 6 weeks or so. They alternate each side of my spine. Otherwise it would be 12 weeks.

If I take more of the film, I get nauseous, even vomit. Also itchy skin. So it's a balance. I start to have some RLS a week or more before each injection. If I didn't get those, I'd have to take more buprenorphine, but as you can see I can't. But I'm generally doing well. I'm retired 12 years now. Time goes by.