Hey there Ruby
Sorry to be out of touch for so long. I can really feel that you are going through a very rough time and in addition to Becat's am sending lots of ((((((HUGS)))))) your way, as well as lots of positive thoughts!
I have read back through your thread and also wondered why your doc was switching you from one family of drugs to another, but then realised, that's what they did to me once, and it did actually work; even if it meant going from 24/7 extreme symptoms to 24/7 mild symptoms, you gotta admit that ANYTHING is better than Extreme
Sorry Jumpy, small correction for you, my main drug up until just over a month ago was Cabaser (Cabergoline), or Dostinex as its known in the States, at up to 5mg per day, not Permax. My side effects were a complete loss of appetite (and in the process have shed 28kgs), occasional nausea, and an annoying dry, unproductive cough, which appeared about 3 months into my treatment.
However, I have a friend in Sydney who has used Permax, and found it an excellent treatment for his chronic RLS, however, he copped the nasal congestion side effect and as a result, often has "drug holidays" and switches between Permax and Sinemet.
Don't be scared to use the Permax!!!
You may find that its exactly what you need as a "drug holiday" drug and might only need to use it for a few weeks at a time before switching back to the Mirapex. The lung problems linked to both Permax and Dostinex usually come into play if they are taken for Looooong periods and in high dosages....as it was in my case. For Dostinex, 1mg is the lowest dosage and 8mg the absolute highest, and I was on 5mg for 9 months straight, hence the cough! However, You may find that you only need to be on the lowest dosage.
Ruby, you mentioned that you are getting bad leg cramps. Are you getting enough salt and/or magnesium? And are your electrolyte levels ok? I know that a lot of people claim that cutting salt completely out of your diet can "cure" RLS, BUT, your body still needs it!! I've known my hubby (and my dad, come to think it) to wake up literally screaming at night with major leg cramps, purely because he's expended a lot of energy and sweat during the day, and although he rehydrated with water, he had not replaced the sodium (salt) he had sweated out as well. This is why pretty much all of the Sports Drinks have sodium in them and taste mildly "salty".
When was your last complete blood work up? If it was more than a couple of months ago, and you've gone so far downhill, it might be a good idea to get one done and check your Ferritin, Iron, Magnesium, Electrolytes, Imuno Levels, basically
check everything, to see if anything "sticks out like a sore thumb"
What most of us are missing out on is much needed REM sleep, which is when the muscles have a chance to unwind and do their repair work. So, i'm wondering if you also might consider going back on to a VERY LOW dose of either amitriptylin or wellbutrin. NO, i'm not saying you're depressed!! However I can clearly "hear" that you are completely worn out and utterly frustrated with this thing
If these drugs were actually helping you to sleep while you were using them, then another round may not hurt, just to while you get yourself (and your brain
) back under some sort of control. Anti-d's, as much as they're being described as overprescribed lately, when used in very low doses, can improve your sleep. For example, I have just been prescribed amitriptylin and the aim is to "reset my internal sleep clock". My dosage started at 10mg and has just increased to 20mg. If I was depressed, and my new Neuro said straight to my face "you are FAR from depressed, just fiercely frustrated", I would have been put on a dosage up around the 300mg mark. This may be something you need to talk to your doc about, as sleep is as vital as the air we breathe
I felt like throwing a party when I found out that I didn't have to take Neurontin any more
I only got to the 600mg mark as well and felt like my whole body was under someone else's control. Your doc should be wise enough NOT to increase a drug which is having unwanted adverse effects which are concerning the patient.
Well, I've rambled....again. Bad habit huh?! However, I hope I have managed to provide at least one piece of useful information for you. You know that I'm always here for you girl.
Try to stay positive, get those stress levels down, and take it one day at a time!
Take care of yourself!
(((((((HUGS)))))))))