A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

[EeFall]

Okay. I'm doing this post over. Dr. E just got back to me and I will be taking 1/2 tab of methadone for a week or 2.5 grams. If that doesn't work then I will be taking a full tab or 5 mg of methadone the next week. He is also looking at my iron results again, I think I might be getting eventually another kind of iron shot but don't know for sure.

The above is ALL that I will be taking for WED/RLS. It could be a much higher dose but the doctor doesn't think so...So beginning about 5 pm tonight I have a new script to take and possible a few more weeks of sleepless nights yet I am happy about this.

[jul2873]

You obviously know much more about Kratom than I do. Still, it might be worth it to get a hold of some leaves, crush them up, and see if they help the WED. It would be a shame if your current stash is no longer good, but wonderful if the fresh stuff really helps you.

Reading all of your postings, as well as the postings of everyone else, I'm convinced that all of our options are bad. I can't imagine how awful I would have to feel to put myself in the hands of a neurologist. So while I certainly don't see Kratom as a good option, because of its lack of side effects at this point it seems the best of bad options to me. I hope you manage to find something that works for you.

All the best . . .

[jul2873]

Oops. Reading over my post, I realize I sound very harsh about neurologists. I understand that most are doing the very best they can with the available options. But it seems to me that the available options are not good enough to try. And I guess I'm suspicious about their reporting of instances of augmentation. I do see that a few, anyway, are trying very hard to find out about this lousy disease, and are trying to develop new treatments. I salute them.

[EeFall]

You obviously know much more about Kratom than I do. Still, it might be worth it to get a hold of some leaves, crush them up, and see if they help the WED. It would be a shame if your current stash is no longer good, but wonderful if the fresh stuff really helps you.

Reading all of your postings, as well as the postings of everyone else, I'm convinced that all of our options are bad. I can't imagine how awful I would have to feel to put myself in the hands of a neurologist. So while I certainly don't see Kratom as a good option, because of its lack of side effects at this point it seems the best of bad options to me. I hope you manage to find something that works for you.

All the best . . .

Thanks! As I mentioned in the post above I sort of wrote over I will be taking 1/2 tab of methadone or 2.5 grams for the next week, then a full tab the week after if the 1/2 tab does not work per Dr E.

[EeFall]

Okay. I'm doing this post over. Dr. E just got back to me and I will be taking 1/2 tab of methadone for a week or 2.5 grams. If that doesn't work then I will be taking a full tab or 5 mg of methadone the next week. He is also looking at my iron results again, I think I might be getting eventually another kind of iron shot but don't know for sure.

The above is ALL that I will be taking for WED/RLS. It could be a much higher dose but the doctor doesn't think so...So beginning about 5 pm tonight I have a new script to take and possible a few more weeks of sleepless nights yet I am happy about this.

[rthom]

maybe after your body being on so little it will help more this time---here's hoping for that outcome, for you.

[ViewsAskew]

Reading all of your postings, as well as the postings of everyone else, I'm convinced that all of our options are bad. I can't imagine how awful I would have to feel to put myself in the hands of a neurologist. So while I certainly don't see Kratom as a good option, because of its lack of side effects at this point it seems the best of bad options to me. I hope you manage to find something that works for you.

All the best . . .

It sure feels that way at times, doesn't it?

[EeFall]

I had a nice conversation on the phone with Dr E and he is very aware that withdrawals can last up to 3 to 6 months or even longer with the medications involved with controlling WED/RlS. He said that 10 days of stopping the medications is usually long enough to get over the hump (the worst withdrawal symptoms) and then he can start reintroducing medications if needed until the symptoms of RLS are under control. The amount of meds is usually much lower than the patient would have previously been taking because it sort of resets the augmentation problem that persists until one has gone off all of their medications for RlS for at least 10 days.

In my case I was probably very dependent on Lyrica which was stopped first as part of the 17 days to stop taking all of the medications. So when I started this detox 28 days ago the first day of no Lyrica was fine because it took a day before my body realized it wasn't there, but the second and third days I was already in horrendous withdrawals. Then it went from bad to extremely bad as the other 2 meds were stopped also. The methadone withdrawals probably did not kick in until the beginning of the 10 days of no medications.

So I probably went through 2 humps really, right at the beginning of lowering the doses and then at the beginning of the 10 days of no medications. Each of these lasted several days and were severe, I would say at some point becoming almost psychotic episodes. I had intense withdrawal symptoms that looking back on it included almost a loss of who I am and the ability to make rational decisions (driving a car without any realization that I shouldn't be driving and ended up either asleep or sleep driving wreaking my wifes car). I also was sleepwalking including believing I was in a circus jumping from one elephant to another (the reality was that I must have leaped standing on the couch (elephant) and jumped over to the hardwood laminate floor (other elephant) landing on my right knee (ouch). I vaguely remember having conversations with people, including groups of people that were never actually there. This was from the withdrawals and many days without any sleep at all.

But anyways now I have to slowly go back on methadone until it is enough to be able to sleep at night and to be able to work during the day without having RLS symptoms. The next few weeks probably won't be very enjoyable either but worst is over
Thanks to all of you who have posted on this thread and especially suggestions and encouragement as this has been almost more than I could bare at times. I suppose it would be too much to expect to sleep tonight but I am headed that way now to find out!

[ViewsAskew]

May Morpheus find her way into your bed (or couch, lol).

[EeFall]

May Morpheus find her way into your bed (or couch, lol).

I think she made it but she was an early riser at our guest room (even used VPAP). I did sleep, I'd estimate, 2 hours last night which is just this side of wonderful (when one starts to get used to zero sleep it is wonderful and I am grateful for it).

[cornelia]

Eefall, have you thought about asking dr E for what he thinks of a few days a week methadon and maybe 2 days a DA? Like Ann does and I do more or less too? I know he doesn't want you on a DA ever again, but would he OK it for 2 days a week? This to combat tolerance etc.?
Corrie

[ViewsAskew]

Eefall, have you thought about asking dr E for what he thinks of a few days a week methadon and maybe 2 days a DA? Like Ann does and I do more or less too? I know he doesn't want you on a DA ever again, but would he OK it for 2 days a week? This to combat tolerance etc.?
Corrie

Just my random thoughts....

I waited over two years before I tried this option, maybe three. I think that may have helped. I have no logical reasoning for this and no clinical proof - but I just have this feeling that a few weeks isn't enough time to stop a DA. I'd guess that my symptoms slowly lessened for a full year after I stopped before they settled into the same pattern and instead of 24/7, I had 18/7, and could handle at least 6 of those 18 hours without any treatment.

Could just have been me, of course. We don't have much data on those of us who augment severely AND who remain augmented for long periods.

[EeFall]

Eefall, have you thought about asking dr E for what he thinks of a few days a week methadon and maybe 2 days a DA? Like Ann does and I do more or less too? I know he doesn't want you on a DA ever again, but would he OK it for 2 days a week? This to combat tolerance etc.?
Corrie

Not only does he not want me on DA's but he wants me to take only one medication. I don't think it has to be methadone, but one similar to it. Who knows it might not work and then he would have to do something else.

[badnights]

I wouldn't even think of a DA at this point. In general the concept is sound, to avoid tolerance, but I think DAs in WED should be considered with much more caution than other meds. So soon after augmentation might be a bad idea - but like Ann, I am not really basing this feeling on anything solid.

[EeFall]

Just an update on how it goes. It goes very well! I have now slept 7 days in a row. Last night 7 hours and the night before 8 hours. All I am taking is 2.5mg methadone at 4am & 11am and 5mg methadone at 5:30pm, so a total of 10mg methadone everyday.

To put that into perspective before going through the detox of reducing my medications to zero which took 17 days and the 10 additional days of no medications at all I was taking Lyrica 200mg a day, pramipexole .25mg a day, and methadone 12.5mg a day.

So now because I am taking one medication, and less of it, I am about as normal as I could be, I am just a little more groggy during the day than if I took nothing at all. Of course if I took nothing at all I would have RLS symptoms 24 hours a day and would rarely be able to sit down much less sleep.

As the week progressed I was able to go from 5 hours sleep to 8 hours. The night before I remembered that earplugs had been working for me and sure enough, they work great. I think it makes it so I don't hear the VPAP machine (or anything else) and I sleep much more soundly. It is like paradise! I start back to work Monday and I am thinking that I probably will not be missing anymore work for a very long time. The reason being is that I no longer take pramipexole (Mirapex) that I would continually augment on. I can't hardly believe there is such a huge change, I just hope it continues for a long time.