jakesmom wrote:I have been looking for a different doctor for a long time. In small town America, doctors don't like to cross other doctors. I don't have the luxury of access to doctors that give opiates or know what rebound and augmentation are, or believe I will have increased pain when I get off pramipexole.
I often take .75 in the morning if I am not hurting too badly. I am clinging to my job it's bad enough my memory is failing, I don't have the luxury of going in late when I haven't slept. I don't have a job where I can work from home and I am happy for those who can. If i fall asleep at work , I will lose my job. We are going through some major software changes at work. I can't miss or I will be left behind. I can't lose this job; I need health coverage.
Getting off this much pramipexole will require help. Help that I am trying very hard to get.
It doesn't require help to get off that much pramipexole. I have gotten off many drugs and I learned how from a doctor. You slowly start taking less. That is how to do it. If you are taking 3mg a day cut it to 2.875 for a week, the next week cut it by another .125 mg. Do that every week until you have stopped taking it (purchase a pill splitter).
If you find that stopping by .125 mg is too fast (you begin to have withdrawal symptoms) you slow down and take .125 mg less but do it by increments of two weeks or take .0625 less per week. I doubt that will happen though, .125 mg less per week should work.
I would not get completely off of it though, I would go down to what is the minimum dose that works, probably around .125 to .75 mg per day. If it works for you at the lower dose to get rid of the symptoms that's great, if the side effects are still bad at the low dose continue to try to find a doctor, or to get your doctor to switch meds, but they don't need to know you are taking less. When they switch you over make sure you find out what the minimum dose is that works for the new drug and take that (if what they attempt to give you is a higher dose) and see if it works. If not increase the dose every few days to the maximum dose. If that does not work tell your doctor it doesn't work either.
I have not the luxury of being able to take anything else other than pramipexole (mirapex) because nothing else works for me. The doctors have tried everything else, including trying methadone exclusively and it doesn't work. I rarely sleep well now. It is 2:10am and I have to "get up" at 3:20am to get ready for work. Mirapex has augmented on me yet again, probably 6 or 8 times now over the last couple of years, and maybe a dozen times over the last 13 years. I don't plan on taking it again for 6 months because the last time I tried staying off of it for 30 days and it only lasted 30 days until I augmented again. It may never work again.
I survive during the day by taking Lyrica and methadone but it is not enough. When at work, so I don't get fired from nodding off constantly, I drink between 1 and 3 Starbucks' Double Shot Mocha energy drinks (3 flavors). They are 200 calories a piece so I have to be careful, but with the added ingredients in them besides coffee they are able to keep me awake to work. I usually only have to drink 1 but sometimes it is not enough. I drink them early in the morning so they don't affect me during the evening. I have a highly technical job that requires that my thinking cap is on all day
, I work with computers also, I'm mentioning this to let you know that all that I am saying does work for this type of job environment.
If I get zero sleep, which seems likely tonight, I will take about 12 grams of kratom (1 tablespoon) and it is enough to allow me to get through another day at work. You can google "kratom" to find out about it, but it will say next to nothing about using it like I do. It not only allows me to work through the day but it used to work well as an alternative to mirapex at night. I have taken it on and off for 5 years and I think my tolerance level has affected how it works for allowing me to sleep at night (it doesn't stop the RLS symptoms much now), so I don't use it for that now. I suspect though that my RLS/WED is just becoming even worse although my condition is the worse they have seen as it existed over 6 months ago.
I just hope that you try to help yourself. You are in a bad situation. Asking help from someone who is so ignorant about you condition just seems like a no win situation to me, especially since they don't seem open to you enlightening them. I grew up in a small town of 2,500, when someone had something more serious than the common cold or the flu in my town they would go to a larger city to see a specialist. Many refused to have either one of the 2 doctors in town so they would go to the bigger city 30 miles away (25,000), or the larger city 130 miles away (120,000), or the really large city 300 miles away (1 million+ people)
I live in a suburb of the million plus city now, a town of 6,000, so we have the best of both worlds.
