I think the doctors broke my brain

[Oozz]

It’s been 7 years since I first started posting here. It has been a wild ride with ups and downs. I hate to say it but I am much worse off now then when I started this journey.

I’m working with a top RLS doctor and he fails to treat me or work in my behalf. He’s basically said there is nothing left for me to do. He just listens to me and shoots down any ideas, he has absolutely no interest in trying to help me. Furthermore, I believe it was his arrogance that led to my current state - he just didn’t listen and used a cookie Custer strategy. I’m 37 with two small children, I can no longer sleep like a normal human being with or without medications. Each day I grow closer and closer to being disabled.

I always knew my RLS was different. In the way it presented itself, it was in the scapular. It only came at night, between 3-7AM. It never progressed. Then I went in mirapex and “augmented”. Only my augmentation wasn’t normal. I’d just wake up with hot flashes unable to go back to sleep. It’s like something was trying to wake me up and fighting the sleep and the heat of the battle woke me up. My RLS symptoms would never start earlier or spread to other body parts like everyone else.

I told my doctor this and he upped my mirapex then finally put me on methadone. He just indicated that this was tolerance. The methadone worked great about a year but I developed serious GI side effects. From there, we tried all kinds of drug but nothing worked as well as methadone. It was during this time that he really gave up on me. I’d ask him if something was okay and he’d just kinda wave his hand and say, sure, if you think it’ll work.

Finally, I decided to come back to methadone. So, I tapered off the dopamine agonists and we agreed I would do 3 days methadone 3 days mirapex. It was during this time things started to change. I started waking up on the mirapex with a large popping noise in my head - like something in my brain popped or exploded. It didn’t hurt, it was just alarming. Like the two forces that were fighting finally erupted and broke something. I told my doctor this and he told me to see another neurologist. He said it had nothing to do with the RLS. I saw o and they found nothing.

Then, I went without medication for a week. And, the craziest thing happened. Instead of getting RLS at night, i just got this terrible headache. When I closed my eyes and went to sleep, it would come but when I wake up it would go away. Nothing would relive it but more methadone or mirapex. It’s like… the RLS moved. The signal that was going to move a part of my body is now acting on another part of my brain. Like it went up the chain somehow. It was like.. my body was fighting the sleep, telling it to wake up.

Finally, after about a month, I decided to just go back on methadone. It worked and my life was normal again. But, about 2.5 months in, I developed tolerance. But, not in the same way. I wouldn’t experience normal breakthrough symptoms, it was the headaches. They were terrible. I increased my dose and the fighting feeling came back. It was like two parts of my brain were fighting. I told my doctor and he said it’s not related to the RLS, but the other neurologists found nothing.

My RLS doctor said, some people are just tolerant to
Methadone… but, this isn’t tolerance it’s something else entirely. The medication is 50% effective at 7.5-10mg, but 0% is effective at 15mg. It’s as if the increased opioids is increasing what ver is augmentation turning it into overdrive. I can feel my brain pushing for sleep and it’s like something is just not allowing it. At 20mg, the opioid overrides this effect but that part of my brain stays awake during sleep. I sleep, but I wake up and I’m not rested. I look like I slept, I recall dreams, but my body aches and my mind is very tired.

I’ve continue to test this over and over again and the pattern is quite consistent. I’m 99% sure this was caused by the dopamine agonists. This was not the case when I first got on methadone. Pray for me.

[Polar Bear]

Oozz, I am so sorry to hear this. You say you are working with a top RLS doctor but you are getting nowhere. Have you been with this doctor for many years.
Have you considered going to one of the RLS Quality Care Centres. It often means travelling to get to one but you just may live near one, Unfortunately there is a waiting list. These doctors are definitely top of the tree in the treatment of RLS.
If you go onto the main rls.org site you will find details of their location.
Your current doctor is no longer appears to be helping.

[Lissa496]

Hi Oozz, I am sorry to hear that you are going through all of this. Not many people read this section of this forum, I would suggest moving this comment up to medication to see if you get more hits, maybe someone else has experienced what you have.

I was on Mirapex and it did not cause the headaches you are mentioning when I was coming off it, though I did not go on methadone, I went on tramadol. Also, I don't withdraw like most people, I went off it cold turkey and had some side effects but not the DAWS that most people have, and I was on it for quite a few years and had to come off it due to control issues, and I was on a very high dose, my doctor did not understand what he was doing.

Have you had an MRI to determine if you are having migraines? It sounds like you may be having migraines and trying Topamax (topiramate) may help. I use this for my migraines and it is supposed to help RLS too. It cannot hurt to have an MRI to rule out migraines and adding in topamax might help, I would ask your neurologist.

I would also, suggest finding a new RLS specialist, maybe a neurologist who specializes in movement disorders, that is who I am seeing now. Since the pandemic, there are a few RLS specialists who after the initial meeting will see you virtually now, and as Betty has suggested there are quite a few good ones on the rls.org site.

Best of luck, Lissa

[tea4one]

Hi Oozz, I'm sorry about your struggles. I don't experience headaches, but I do experience something of an "activating effect." I feel more active around 3-4hrs after taking methadone. I've seen others mention this as well. I wonder if this is somewhat similar to what you experience.
I concur with Betty (PolarBear). I would attempt to see someone on the list of Quality Care Centers, nearest to where you live. It can make a huge difference.