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And, now my turn
Posted: Fri Oct 30, 2009 9:49 pm
I just placed tickets on hold; I was able to find a flight (after two weeks of searching) for around $200 USD. I'd forgotten I'd received a stipend for a speaking gig I did and it is $300. I figure it will cover the plane and the rental car, lol, so I'm not officially spending my savings.
So, Mon, Nov 7th, I hope to be as happy as Susan is. More importantly, I hope to have a brain that functions.
Unlike many of the people here, I do have problems with tolerance and opiates and this is a huge concern for me. I've "needed" to go to a higher dose for 8 or 9 months. The longer I put it off, the more the RLS gets out of control. I could increase it, but then I'd only have one increase to go before I'm at the limit, which Corrie was talking about in an earlier post. So, there must be a way to deal with this.
Corrie, in the past when I've emailed Dr B about the tolerance issue, he didn't seem to have much faith that switching would work. If you remember the links to any of those studies or anecdotal evidence on the Internet that discuss tolerance and switching between opioids, please post them or PM me. I'll send them to him ahead of time to make sure he gets them.
Posted: Fri Oct 30, 2009 10:15 pm
Ann, I'm so happy for you. And so envious of your appointment, how I wish we had an expert over here.
Posted: Fri Oct 30, 2009 10:22 pm
Yay, hurray! I was thinking that after I posted my experience with him, that it wouldn't be long until you made that appointment.
Posted: Fri Oct 30, 2009 11:21 pm
I actually had the appointment made before your post, Susan, lol, but needed to verify some things before I posted. My husband made it clear to me a couple of days ago that it didn't matter what is cost, that I needed to go NOW. On the way to a meeting the other day, I mentioned that I could get a cheaper flight in December (I already had the appointment) or I could go in two weeks for more money. I asked, "When should I go?" and he said, "Tomorrow."
For the first 7 or 8 months of us working together, he had a hard time getting into the routine - he's been retired for 6 years. I was trying to work for both of us, but would conveniently waste my time when he wasn't helping
But, in the last two months, I am not carrying my weight OR wasting my time - I'm rarely awake during the day or if I am, I can't think straight enough to put together two intelligent thoughts. So, now he's in it 100% and I'm in it 2%.
If we're going to be successful (and we have a BIG vision statement to live up to), then I need to be 100%, too. Or at least 80%, lol!
Posted: Sat Oct 31, 2009 2:54 am
As trite as it sounds, I hope this visit is your answer. I mean that from the bottom of my heart.
It helps to have a supportive husband.
Posted: Sat Oct 31, 2009 3:24 am
Hey everybody, there's a couple of pictures of Ann on the RLS foundation's facebook page!
Posted: Sat Oct 31, 2009 3:29 am
I'm happy you're going out there, Ann. I'm sure that Dr. B will find a way to get you some relief and some sleep. He's so unbelievably knowledgeable and competent.
And he returns phone calls! He called me back this evening about the sleeping pill issue, and was shocked that I didn't have any sleeping pills at all. So some Ambien is coming my way, one way or another.
Posted: Sat Oct 31, 2009 5:29 am
He really is pretty amazing. I know we talk about him a lot more than the other specialists....but it's hard not to!
I know he has some very interesting hobbies - he loves underwater photography and scuba diving - and is married with kids (though they are in college) - so we know he's not working 18 hour days because he doesn't have a life! So, I want to know how the heck can he be so involved in patient care, have a personal life, work for the Foundation, write books, answer all those emails. It makes my head spin just thinking about it!
Dr Rye is equally wonderful in terms of knowledge and personality. He's got a great sense of humor....but he doesn't answer everyone's emails, so we don't know as much about him as a community. I imagine that many of the other docs are just as wonderful, too.
I'm just glad we've got someone like him. I can't remember the story of how he got involved in RLS - it was a mentor, I think - but I'm glad however it happened. We deserve someone like him.
Dale and Polar Bear, thanks for the kind thoughts. I've put this off for so long because of the cost, because of not being sure my PCP will work as well as I need her to but mostly I put it off because it's likely to be hard. Given my history with medications and side effects, it may take a bit to find a solution that works on several levels. The only reason I can contemplate it that I know that he'll work with me as long as it takes. I think that's what we all want. Someone to be in with us for the long haul. Someone who'll find another way when it looks like it's a dead end.
PB - the next time you visit your son, make a detour to So Cal. It's not like having an expert in your own country, but I bet he'd be happy to have you.
Posted: Sat Oct 31, 2009 5:52 am
He has 2 large photo albums in the waiting room of his underwater photography in Indonesia or somewhere, and all the large pictures on the walls are ones that he's taken. He's quite adept at photography. I picked up a Canadian accent and asked him about that - he came to LA to do some postgraduate (I think) work and decided that he really didn't need the northern climate. I can't say I blame him for that...
He's so focused and attentive, I can only think that he gets much better sleep than I do.
Posted: Sat Nov 28, 2009 3:33 am
I realized very belatedly that I was somehow posting in Susan's thread. My apologies to Susan.
Tonight is night 8 using Mirapex and tramadol. I've had to start throwing in Lyrica to help me to sleep. I just hate how Mirapex makes me feel at night. The body temp regulation issues are so miserable. I awaken after about 3 hours of sleep and it takes me at least 30 to 45 minutes to cool down enough to fall back to sleep. My brain is moving 100 MPH as if I had taken something to keep me awake. At the night progresses, it gets worse. I sometimes manage only 4 to 8 minutes of sleep in between awakenings, taking at least 5 to 10 minutes to fall back to sleep. I finally just get up, exhausted from it.
I tried Lyrica two nights ago, but it wasn't enough. Last night I doubled it and it worked. I slept with only about 5 or 6 awakenings. Much better.
So far, still no symptoms of withdrawal. I have had a few headaches, but I get them frequently anyway and rarely know the cause. I was reminded recently that people who don't sleep well often awaken with headaches. I'm guessing that most of mine are because of this as they dissipate throughout the day, but are usually worst in the morning.
The Mirapex is either controlling the odd RLS that was awakening me or else it's stopped. I think I'll try it through the weekend (10 nights) and then try the methadone again. Not sure if that's long enough but as I close in on 2 weeks with Mirapex, I am getting worried that I'll have issues with augmentation and do not want to chance it.
Hope all the Americans on the board had a wonderful Thanksgiving.
Posted: Sat Nov 28, 2009 6:58 pm
LOL Ann. I just thought, wow, she is tired.
I would think that 10 days off the methadone would be enough. I've always heard that it takes 6 half lives for a drug to totally leave our systems. Methadone has about a 30 hour half life, so it should take about 300 hours to be totally out of your system. Ten days is a little shy of that, but hopefully it's long enough.
I found this article online about methadone withdrawal. Apparently it lasts up to 10 days. I don't know how you would distinguish between these symptoms and the Mirapex side effects. Of course this is related to higher doses of methadone that are used for addiction treatment.
During methadone treatment (or any long-term opiate use) the activity of the neurones that respond to noradrenaline is reduced. If the opiates are removed there is apparently a surge of activity in the neurones resulting in a rise in the levels of noradrenaline.
It is this physiological process together with raised anxiety levels which are largely responsible for the classic opiate withdrawal characteristics listed below:
* Yawning, sneezing
* High temperature but feeling cold
* Goose bumps
* Irritability, aggression
* Muscle spasm and jerking (especially at night)
* Nausea, vomiting
* Loss of appetite.
The cause of deep aches that people experience as 'painful bones' in their limbs and lower back is not known.
Posted: Sat Nov 28, 2009 10:12 pm
Thanks for the list. I can honestly say that none of those apply. I know the Mirapex side effect so well, that any that are similar to Mirapex are definitely Mirapex. I've had many of the symptoms on that list with the benzo withdrawal - very different from the Mirapex temp regulation issues, etc.
Interesting formula for figuring out the withdrawal time.
I just hope it actually DOES something. The RLS is quite under control with 200-300 mg tramadol and .0625 mg Mirapex. The Lyrica allows me to fall asleep and stay asleep, but doesn't affect the RLS.
Given that, you'd think 5 or 10 mg of methadone would be fine. When I was heavily augmented, 300-400 mg of tramadol wasn't enough, but 10 mg of methadone was. So, given that this is much lighter than when I augmented, how could 10 mg not be enough?????
Of course, that logic may not apply
Posted: Sun Nov 29, 2009 4:53 pm
I keep trying to find ways to minimize the weird Mirapex side effects, particularly is keeping me awake for much too long if I awaken. So, I've started to take it a bit earlier each night. Last night, I took it at 10 PM. Great, no RLS. But, I couldn't sleep. Up until after 4 AM, wide awake. Even the Lyrica wasn't working, so I finally took another Lyrica and did sleep around 5:30.
Unfortunately, by 9:30 I was awake with RLS. The Mirapex effects are indeed gone, but so is it's helpfulness! Or else I'm augmenting
. I just know I've not been able to stop gentle movement since I awakened and I certainly couldn't go back to sleep.
Maybe I'll stop the Mirapex one day early and go for 9 days. I was off 5 days initially, used it for 2 or 3 (I think), then off for another 9 as of last night. It better be enough!
Whether it is or isn't, I guess I'll find out as of tonight. I'd love to test it right now and go back to bed!
Posted: Sun Nov 29, 2009 8:40 pm
Good luck for tonight.... here's wishing you some beautiful sleep.
Posted: Sun Nov 29, 2009 8:43 pm
Its worth nothing, that withdrawal symptoms are not linked to a specific dose of any particular drug. Its more about your personal tolerance and what your body deems as required.
But as far as I know, most MMT patients are weened off with a slow taper, down to as little as 1mg. And its still hell for some of them.