I’m new, joined about a week ago. I’ve been diagnosed with RLS for nearly 28 years, on sinemet (S) and mirapex (M). I’ve been seeing the same neurologist, Dr I, not sleep specialist for 16 years who has been overseeing my care. She never mentioned side effects except antagonists or rebound. She asked if I felt a compulsive desire to gamble or have sex about once a year, neither was an issue for me. I did not research as I should have.
I was referred to an RLS specialist twice, Dr G. The first time he directed me to take two weeks off of M and S with out any titrations or other meds. I was miserable but I did it and when I resumed M and S it worked better. The second time was last week, 6/18.
He began by saying I was taking too high a dose of both M and S, which he prescribed 5 years ago. He said several times that I should stop taking both and try opiates. He did not tell me that opiates are approved for RLS. I thought he was saying my symptoms were considered pain.
I asked him why opiates. He said if I talk again he will hang up. I said “ I thought this was to be a conversation? I will aquifers to you now”
He spoke of methadone and oxy and asked me to choose. I asked if I could speak now. I realize this made him angry. I had no idea which to choose. I chose methadone because in my very limited understanding it seemed maybe less addictive? I said he had mentioned that the dopamine was “ very bad” more than once, aside from augmentation was there other concerns. He said no.
He never mentioned side effects such as hypotension ( my blood pressure is very low, 90/30 or even 20 on the bottom). He never mentioned kidney disease or any other side effects.
I picked up 11, 5 mg methadone tablets from pharmacy that same day. I stopped M and S dopamine drugs. Instructions were take one half tablet in afternoon ( 2.5 mg) and one tablet (5mg) every 12 hours. A bit confusing but the after care note said one half in afternoon and one Half to one Tablet at bedtime.
Thursday and Friday I took one half in afternoon and and one half at bedtime, total of 5 mg a day. I woke 3-4 times during the night due to leg movement. Saturday I took one half and one tablet at bedtime, total 7.5 a day. I was not awakened by leg movements but was too sleepy. Sunday I returned to one half afternoon and one half a tab at bedtime.
Friday I made an appointment to see another Kaiser sleep specialist., scheduled for July 1, 20.
Monday, 6/22, I messaged Dr G the above, I said it was helping a lot. I said I had learned more about mirapex side effects and no longer want to resume mirapex. I told him I had 6 and a half tablets left. I asked him to refill the Px because I did not have enough for two weeks.
Tuesday, 6/23, Dr Ge messaged the following:
“ Methadone is not to take so much. It is habit forming and is going to have long term side effects. I would not recommend going above 5 mg at night. You should go back on mirapex. That was the plan.using Methadone long term has major side effects”
I did not understand I messaged him that evening :
I am taking methadone exactly as prescribed. It is helping. Thank you
Wednesday is nurse called at 10 am and said Dr G wants to know what you meant.i said I did not understand his message either. I meant only what I said.
Nurse said with emphasis, “ Dr G prescribed thirty tablets, why do you have 6 left. I said I received 11 tablets. She started to say
“ No”...then apparently saw in chart and said “ They gave you 11 tablets, why”; I DONT KNOW.
I called pharmacy and there is a kaiser protocol to give few controlled substance meds to “ naive” patients who have never before used C S medications. I asked why I wasn’t informed. She said I was, then looked at info and said I was supposed to have been told but wasn’t told. Dr G was not aware of this policy, he is a Kaiser doctor? He might have asked why the numbers did not add up before concluding that I took 24 pills in four days.
Pharmacist told Dr G who released the rest of the medication but did not apologize or admit mistake on his part.
Sorry so long.
Questions:
Should I explain Dr Gs behavior to new Kaiser doc?
Have I been stigmatized. Shoul I ask Dr G to clear it up.
Should I just find a doc outside of Kaiser? Dr Buchfuhrer perhaps?
I need help. I have been taking methadone for one week and already these problems. Should I reconsider opiate use altogether and what instead. I cannot tolerate neorintin.
