Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.
Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
I saw Dr B three days ago at his Downey office. He's a very nice person and, most of all, he's very encouraging. He gave me a Rx for methadone and I'm to quit the Mirapex 1mg at bedtime and also the acetaminophen/codeine, both of which I've taken for about 12 years.
Kind of a side note: there's a pharmacy in the building where his office is and I naturally assumed they would have methadone in stock. Nope. I tried several other pharmacies on my way to Long Beach where I was staying. Nope, nope, nope. Finally I called Dr B's office and the friendly receptionist said she'd check around. She arranged for a pharmacy about a block away to hold the med for me. So back to Downey I went. Dr B, you don't pay that receptionist enough.
I'm going to start the methadone tonight and not take the pramipexole and codeine. I'm a bit anxious. A couple of years ago I tried getting off pramipexole cold turkey and I lasted about 5 nights. It was like being in a medieval torture chamber and I still have that memory. I'm really hoping the methadone helps me through.
And that's the other thing. I'd rather not continue with the methadone going forward. It would be another med I'd be dependant on but (from what I've read) much harder to obtain. I've tried the other RLS meds which don't work well for me - side effects mostly. So it would be so nice to find myself in a post-pramipexole world where things have gotten "reset" and I won't need any drugs. I know that's not likely but you have to stay positive.
I remember on my last visit there that the nurse or receptionist at Dr Bs said not to try the one in the building (I had asked). She said he wasn't accommodating. I found it across the street. I was in San Pedro and had gone to many pharmacies and was turned down. So glad you were able to get it!
Where are you staying in Long Beach? Hope you are enjoying it.
Hope your first night works well. It did for me all those years ago. I would highly suggest that in about 2-3 weeks, you see what things are like without anything. I wish I had done that. it may not work...but it could.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Bjorn, I hope that your transition goes as smoothly as mine did last year. I was seriously augmented on 1mg pramipexole and felt better within hours of taking my first methadone pill. I still take a small amount of pramipexole to treat my PLMS, but never had any issues dropping from 1mg to 0.25mg in one day. As for the methadone, I am resigned that I will be taking it for the rest of my life, or until the government make it impossible for me to get it anymore. In the later case, I am not sure what will happen because my RLS is not controlled by and therefore I cannot live on DAs or alpha-2-delta meds.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Ann, I stayed at the Best Western Golden Sails motel in Long Beach for a couple of nights. Nice place and reasonable. Generous breakfast too. I'm back in Oregon now. Steve, thanks for sharing your experience. Encouraging.
I took my first dose at 7pm and the second dose 30 min ago, around 10:30pm. I had a small bout of RLS in my arms around 9:30pm but it passed. I don't feel out-of-it groggy, a little spacey maybe. So far so good.
You were in Belmont Shores! My cousin used to live about a mile from there . Last fall, when I officially moved to CA, she and I took a bikeshare membership and rented the bikes there each weekend and rode along the ocean. To me, that is the best part of Long Beach - more like the other beach towns than the rest of Long Beach. Also caught a lot of Pokemon along 2nd street, lol.
Nice that it wasn't too far for you to go to get to Dr. B. I honestly do not know what many of us would have done without him.
I was severely augmented - 24/7, hadn't slept more than 20-30 minutes in weeks, RLS in arms, and violent PLMS while awake - when I tried the methadone. For me, it was almost immediate. Hope it is for you, too.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Bjorn - I am hoping so much that this works for you.
You are back in Oregon I visited Portland twice in the last 3 years. Loved Oregon City, Mount Hood, The Dalles, Vista House at The Columbia River Gorge. What a wonderful state to live in.
Here's the day after my first night on methadone report:
I slept like a baby - screaming fits all night long and incontinent. Just kidding!
No RLS whatsoever and I slept very well. I'm not feeling hung over either which was a concern. I wasn't sure what to expect with methadone but it doesn't seem to be something that people would "like" to take. I didn't experience any euphoric effects. I'd been on acetaminophen/codeine for quite some time and occasionally I'd get kind of a mellow glow, similar to what I'd feel after a glass of wine. It seems odd that I had no trouble getting a codeine Rx whereas methadone can be a struggle to obtain. Well, maybe methadone can be more dangerous if not dosed correctly, but I think it's gotten a bad rap along the way. I've read a few posts about negative reactions when people find out what you're taking for RLS.
Ann, I lived in Long Beach from the 60s to the mid-70s. I've been back to visit twice, I think. This trip I found the places where I once lived and the houses look about the same (from 50 years ago!), but I didn't recognize downtown LB at all. It's totally changed.
Betty, yes Oregon is a nice place to live. I've never been to Ireland, but one of these days...
How was your first night, bjorn? I share your hope that somehow there will be a way to avoid meds altogether. Not much rational thought behind that hope, I guess, but it's there. I wanted to do some iron infusions first, but I am running into roadblocks getting my GP onboard. I'm sure the methadone is going to do the trick for you, and that you can reduce it once the pramipexole withdrawal is over. Good move, seeing Dr B.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Bjorn - DT LB is indeed MUCH changed! My cousin moved there in the mid 90s and if I hadn't been visiting regularly I wouldn't recognize it, either. But, the house she bought then (and sold later) looks just as it did when she bought it and likely the same as it did when it was a rich person's beach home in the 1950s, lol.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
I augmented with mirapex, and taken off, but it was replaced with five other drugs that did not work well. I was a mess. Started methadone a few months later. What a relief. I was able to wean off all of the other drugs. I was a new person. The biggest issue with methadone is finding doctors who will prescribe it and then a pharmacy. It's been 8 years since all that happened.
So now a problem has come up. The treatment plan from Dr B is working well for me, however I have a family member who is strongly opposed to methadone and to any doctor who would prescribe it. It doesn't matter that it works, it matters that I'm becoming a methadone "addict." Like there isn't enough stress getting myself off pramipexole... What I want is to have the family member communicate with Dr B via email or by telephone and I believe Dr B would be agreeable to that. Some of you seem to know him pretty well, so do you think that would be a good approach?
Can you prepare the relative by asking him/her to read some selected references? Something like the Foundation''s Medical Bulletin that states that opioids are an effective treatment, the webinar in which opioids are described and methadone in particular is described as effective in low doses relative to some of the others, & I have some that describe the impact of severe RLS/WED on qualtiy of life so the point is made that going without effective treatment is not an option, and finally one that states how WED patients are even less likley than pain patients who are even less likely than the general population to become addicted to opioids used for treatment of WED.... the groundwork could be laid, then Dr B's efforts would be more likely to succeed? I imagine you've tried to explain things already, but I find when I try to explain,I forget the important parts because they re so obvious to me.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Methadone addicts take a whole lot more than we do for RLS. I take a total of 10 mg and some addicts take as much as 150 mg. Big difference just in amount.
He might email the person. He has talked to random doctors of mine (at least four) over the years when I tried to get them on board with his protocols.
The years I have spent as a volunteer mediator and the recent political disagreements and tensions in the US have taught me that statistics and facts do not win over hearts and minds. Your family member needs to process this emotionally, not factually. In one study (and, yes, I see the irony in stating a study to make my point!), when facts were presented, the person with the opposing view actually moved farther into their believe. MRIs can show how this happens in the brain.
Research also shows us that decisions are emotional, not logical, not matter how much some of us want them to be logical!
I have seen suggestions on how to handle discussions when someone holds a belief that is highly emotional, but is not in line with logic/science/research - but a quick search of my computer didn't find them. I thought I had them bookmarked...either I do not or I didn't categorize them in a way I can find them!
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Things seem to be resolving with the family member. Thank you all for the input. Ann you are correct about decisions based on emotion and that is something I need to work on. What I mean is that my decisions are based on reputable studies - logic, science, one plus one equals two - and I just don't understand the emotional side. It's not as extreme as Mr Spock but I could be more understanding. Well, anyway... I just completed my 4th night with the methadone (and without pramipexole) and I have to say that this is going way better than I'd anticipated. I know that my RLS management in the future is still uncertain, but this part - stopping the pramipexole - is not the hellacious ordeal it was when I tried it a couple of years ago.
I had a taste of that ordeal two nights ago. I thought I might have to drive someone to the emergency room so to be alert enough to drive I didn't take my 7pm dose. By 9:30pm the emergency turned out to be a false alarm, but the pramipexole withdrawal effects had already begun and they were severe. I took my before-bedtime methadone dose and it took about an hour for it to give me relief. So don't skip a dose but do call a taxi for these situations.
. Last fall, when I officially moved to CA, she and I took a bikeshare membership and rented the bikes there each weekend and rode along the ocean. To me, that is the best part of Long Beach - more like the other beach towns than the rest of Long Beach. Also caught a lot of Pokemon along 2nd street, lol.