legsbestill wrote: ↑Sun Jun 20, 2021 8:48 am
Your desperation is all too familiar and very concerning. It does seem clear that something in your regime needs to change.
I've just scanned through your history as recorded in this thread. I can't help wondering whether you might need to take a higher dose of opioid shortly prior to going to bed. It seems like the evening dose you take (whether tramadol or codeine) is always relatively low and almost inexorably you experience nocturnal symptoms thereafter. This leaves you trying to overcome symptoms with medication. In my experience, it is much more difficult to tame rls symptoms once they get into their stride than it is to avoid them emerging in the first place and consequently - for me at least - a higher evening dose (before symptoms emerge) ultimately results in a lower intake of meds.
Would you consider trying a higher dose of your evening dose of opioid? Even better, use the new found opportunities opened up by the pain clinic to get a stronger opioid. Temgesic (Buprenorphine) seems to work well for RLS. Alternatively, methadone seems to be favoured by Dr. Buchfuhrer and other experts.
Tangentially, I have found in recent years that if I take a reasonable amount of kratom through the day (up to about 12 grams), I actually don't need to wake through the night for a top up dose, whereas if I don't take it through the day, the effect of my evening dose ALWAYS wears off within four hours. I appreciate that it is an idiosyncratic condition and every one has (slightly to dramatically) differing responses to meds so this could be specific to me but it is such a relief not to have to wake up to supplement medication that I put it out there in case it would assist others.
Incidentally, I agree with all the others who have posted that you need to take a good long break from all dopamine agonists.
DAS are out
... unless something along the lines of Ecopipam is approved to treat/offset DA augmentation
Although I don't have symptoms round the clock, i do get them in the "evening " ... a good few hours before bed .
I use a strong sativa to keep then at bay and/or simply keep moving to alleviate the symptoms until I take dose 1 of codeine
I definitely do understand staying ahead of symptoms are an easier way to control symptoms as opposed to dealing with then after they've presented themselves.
Opioid/opiates are great for coverage... except for the constipation
Like.... Constipation someone gets no matter what their diet is ...
no matter what I get constipation
Constipation that is only aleved with daily administration of laxatives and stool softeners
And then I continue to lose weight
.... and that's for only 60-75mg of Codeine
I weigh 150 pounds (down from 190)
I need to be able to eat
This is why I haven't taken a high opioid dose
Although I am weaning my Clonazepam dose, I have been benzo dependent for 28 years
Opioids + benzos do not mix
I take the highest dose of opioid that is tolerable
I guess I'll just have to tolerate more .(or gamble with death )
I will build Codeine immediate release up to approximately 60mg × 2 before switching to codeine contin 50mg
I also have butrans patch (Buprenorphine) as the other option
Not a big fan of wearing a patch for 7 days at a time .
Explaining it to my kids or having them pick at it while we are swimming in our pool (who knows how good balanced pool water and mid summer sun would be )
Also not a fan of being bonefide Opioid dependant , but something needs to be done
I will eliminate thc oil , continue to slighty reduce Clonazepam and perhaps ingest even less than the 0.2 grams of Marijuana I vaporizer nightly so I can safely up opioids
Until I get the ok to take diprydamole from a couple different doctors I'm not going to risk dangerous bleeding
I have had a low platelet count for many years
If I could try a smaller dose first that would be neat.
Parempanel had one study 4 years ago
... there is literally no other mention of it as a treatment for rls anywhere
It is also fairly expensive, but
Then there's the whole Spinal stimulator avenue
... I will not be getting a spinal stimulator
I would need to be at the point of suicide attempts before consider it .
My life just does not allow me to be usless and immobile for 2 months while recovering .
It is too invasive
My wife would not be able to take care of our challenging children AND me by herself
I looked into unapproved (and possibly ridiculous) kailo and signal relief pain patches ... in fact I've worn a kailo patch the last two nights
First night seemed like a miracle... the rls would seem to be dispersed the moment it began .
Last night I tried to apply it to stay ahead of even evening symptoms ...
I did not sleep until very very late
I will try it again.. it does at the very least seem to "numb" or influence the nerves of my leg .
It is something I feel
It is not placebo effect
Anyway ... I'm going off on tangents
Sleep deprived and rushed to express my thoughts as it is now past 2am
I appreciate everyone's input
Rls is complex and I'm clearly difficult to care for (at least I'm aware I'm somewhat impossible)
Steve I eagerly await new treatment ideas .
I'll keep my eyes peeled for your post on or after the 1st of July regarding new treatments cause I know you'll be on top of it
Suppose I can dig it up myself as well
... cause even with all my options, not one of them is anywhere near ideal
I'm risking my phone dying any second so going to wrap up these thoughts for now
I will be trying something different then my current regime is all I know