New Doctor

[ViewsAskew]

I have new insurance so I went through the list of neurologists and compared to websites. I emailed three of them to see if they would be interested and able to take on my case. One responded. We emailed a bit and I decided to see her.

It's late and I am tired, so I won't write an essay about her. I do like her in many ways a lot. She spent over an hour with me. The short is that she really doesn't like methadone, has interesting views on iron infusions, and she seems to believe that we can come up with a treatment that would include small doses of four or five drugs, one of which would be pramipexole, another gabapentin encarbil, and likely another being a benzo. I think she believes that if we can knock me out - by slowly adding these one at a time and knowing I'll be a complete zombie while we do it - and stay on this regimin instead of switching back and forth, things will be better.

I have serious concerns. But, I will go through the sleep study to start. She made a good point. It's impossible to get control of severe RLS and PLMs if you have another sleep disorder, so the sleep study is essential to rule out hypopnias and apneas. Makes sense. I have none of the signs of apnea, but I could have hypopnias that rarely show up because I often don't sleep well enough. She told me to get as drugged up as I can taking the drugs that will ensure I sleep. So, next Thursday that is what I'll be doing.

I'm very leery of the gabapentin as of tonight. A long time ago, I though I had some depression that accompanied taking gabapentin. I stopped it. I used it occasionally to help me stay asleep. Recently, after I stopped taking methadone to break dependence, I started taking it regularly. Slowly, over the last few weeks, I realize I'm doing less and less, sitting on the couch more and more, and my mood is slowly returning to where it was last March when i went to see the doctor about depression. This feels awfully similar to where I just was. It could be a coincidence, but I was using gabapentin quite a bit last spring and am using it daily now. I decided to stop tonight. I guess I go back on the methadone daily - small amounts during the week to help me stay asleep when I take the pramipexole and larger doses on the weekends when I take only that.

[debbluebird]

Good luck. When I had my first sleep apnea, I didn't think I had any symptoms. I was surprised when it turned out that I had it. At the time the doctor thought that the sleep apnea was causing the RLS. It was bad at the time, but I was augmenting and we didn't know it. Doctor was not knowledgeable.

[ViewsAskew]

The reasons I think it's not likely is 1) I've had 4 prior studies that did not show any apneas (all over ten years old and they weren't looking for hypopnias then), 2) hubby has it and we watch each other sleep - I breath just find - regular in and out, not stopping, no gaps, no snoring, etc., and 3) when the RLS/PLM meds work well, I'm very rested and feel good. It's always the medication side effects that seem to be my undoing.

I didn't take the neurontin last night. I used a methadone at bedtime, but it didn't do much to counteract the pramipexole crazy-brain side effects. I had trouble falling to sleep and then started awaking relatively soon. At about 5:30 (went to bed at 3, but not sure what time I fell asleep) I was wide awake, so got up. I wandered a bit and did a bit of internet surfing, then settled on the couch. I watched a boring episode of something on Netflix and took 5 grams of D-ribose and 2 grams of red Bornea kratom. It took about 1.5 hours, but I finally felt I could sleep again. I had to do some deep breathing/meditation, but I was able to wrangle my thoughts (without help, the pramiepxole makes it impossible for me to meditate) and fall asleep in about 5-10 minutes. That was around 8 or so. I slept until 11 - felt I could sleep a bit more (nothing more needed) and slept until 12:30.

Today I feel OK - not great by any means, but not as crappy as I did yesterday. How much I sigh, how snarky I am, and how little I accomplish how = how crappy I feel. I've only sighed 2-3 times today and I've managed to get a few things done, including researching how to take 3 long sleeve knit shirts and make them either short sleeved or sleeveless. Yikes - looks like bias tape is in my future, lol.

[ViewsAskew]

OK - looking for some feedback. I have two options. I spoke with my husband tonight about the move and how important it will be for me to be functional to get through all this stuff. We merged two households 15 years ago and have never really purged things we didn't need/use. I've given a bit away to a niece who went to college and the like, but I also had a photography and stained glass studio, as well as a LOT of horticultural stuff from my efforts hybridizing and growing gesneriads. He had a full music studio and we both had professional businesses. Clearly, we need to get rid of a LOT. I can't do it depressed and with daily symptoms that keep me up at night. Something has to change.

Option 1: I go to California and stay with my cousin in San Pedro for a month or so. I can see Dr. B. multiple times as needed. I can get a California drivers license (we're moving in the spring, anyway) and I can try medical marijuana, get an infusion, etc. Unless I could get insurance there, saying I'd moved there, I'd have to pay for all of this myself.

Option 2: I stay here and work with Dr. Park. Her ideas are different from Dr. B's. First, she dislikes methadone and thinks it is a poor choice. She wants me off of it as soon as possible. She has grave concerns about infusions. I've done a bit of research and I'm not seeing what she cites - that multiple infusions can be deadly, that each one increases my risk for liver failure, vein collapse, and much more. This seems more consistent with older infusion drugs, not the newer low molecular weight ones, but I couldn't find a lot about multiple infusions with them. She also believes I will need to use clonazepam. I truly disliked this drug. It didn't help the sensations at all (though it may have helped the PLMS, I don't know), made me groggy all day, and took me longer to stop than I was on it. She also believes I will need Horizant ER with the clonazepam as well as a low dose of pramipexole and maybe something else. That terrifies me. I am so sensitive to side effects, particularly ones that make me sleepy/groggy. She likes to add things slowly, so she said there could be two months that I am a zombie, sleep little, and have major symptoms as she adds things in. Oh, joy. Mostly, she is into consistency. She things that alternating makes the symptoms worse and that I need to use the same protocol daily. This option, though, would be covered by my insurance.

Regardless, I am going to have the sleep study done here. I don't think I have apnea, but I do want to make sure nothing has changed in ten years. I'm older and heavier - it is a possibility. So, I'll get that as soon as the sleep center can schedule a daytime study. I told them I cannot do a 10 Pm to 6 AM study. They offered to find someone to do a 6 am to 2 PM study. That will be much better. I'll need fewer drugs to keep me quiet and will be good and tired when it starts.

I still have to decide what to do after that. I don't want to dismiss Dr. Park's ideas out of hand. I like the idea of starting over and have no issue stopping methadone and using other things. I do have strong concerns about clonazepam and Horizant ER. But, I could even get past that. What I can't see is how I can use pramipexole daily and not alternate it with something. Now that I've had two infusions, it's not likely I will augment as quickly as I originally did - in less than two weeks - but when I tested it in May/June, I felt that I had some initial signs of augmentation in about 30 days. It might not have been - I am hypersensitive - and I stopped it immediately preventing me from being sure. I didn't ask her at the first meeting what she planned to do about augmentation. It could be she hasn't worked with anyone who augments so quickly. It could be that she uses the approach that some doctors do - that you just increase it over time until it's a real issue. I will not do that again - that is my only real line in the sand.

Just curious what some of you would do and why.

[Sojourner]

OK - looking for some feedback. I have two options. I spoke with my husband tonight about the move and how important it will be for me to be functional to get through all this stuff. We merged two households 15 years ago and have never really purged things we didn't need/use. I've given a bit away to a niece who went to college and the like, but I also had a photography and stained glass studio, as well as a LOT of horticultural stuff from my efforts hybridizing and growing gesneriads. He had a full music studio and we both had professional businesses. Clearly, we need to get rid of a LOT. I can't do it depressed and with daily symptoms that keep me up at night. Something has to change.

Option 1: I go to California and stay with my cousin in San Pedro for a month or so. I can see Dr. B. multiple times as needed. I can get a California drivers license (we're moving in the spring, anyway) and I can try medical marijuana, get an infusion, etc. Unless I could get insurance there, saying I'd moved there, I'd have to pay for all of this myself.

Option 2: I stay here and work with Dr. Park. Her ideas are different from Dr. B's. First, she dislikes methadone and thinks it is a poor choice. She wants me off of it as soon as possible. She has grave concerns about infusions. I've done a bit of research and I'm not seeing what she cites - that multiple infusions can be deadly, that each one increases my risk for liver failure, vein collapse, and much more. This seems more consistent with older infusion drugs, not the newer low molecular weight ones, but I couldn't find a lot about multiple infusions with them. She also believes I will need to use clonazepam. I truly disliked this drug. It didn't help the sensations at all (though it may have helped the PLMS, I don't know), made me groggy all day, and took me longer to stop than I was on it. She also believes I will need Horizant ER with the clonazepam as well as a low dose of pramipexole and maybe something else. That terrifies me. I am so sensitive to side effects, particularly ones that make me sleepy/groggy. She likes to add things slowly, so she said there could be two months that I am a zombie, sleep little, and have major symptoms as she adds things in. Oh, joy. Mostly, she is into consistency. She things that alternating makes the symptoms worse and that I need to use the same protocol daily. This option, though, would be covered by my insurance.

Regardless, I am going to have the sleep study done here. I don't think I have apnea, but I do want to make sure nothing has changed in ten years. I'm older and heavier - it is a possibility. So, I'll get that as soon as the sleep center can schedule a daytime study. I told them I cannot do a 10 Pm to 6 AM study. They offered to find someone to do a 6 am to 2 PM study. That will be much better. I'll need fewer drugs to keep me quiet and will be good and tired when it starts.

I still have to decide what to do after that. I don't want to dismiss Dr. Park's ideas out of hand. I like the idea of starting over and have no issue stopping methadone and using other things. I do have strong concerns about clonazepam and Horizant ER. But, I could even get past that. What I can't see is how I can use pramipexole daily and not alternate it with something. Now that I've had two infusions, it's not likely I will augment as quickly as I originally did - in less than two weeks - but when I tested it in May/June, I felt that I had some initial signs of augmentation in about 30 days. It might not have been - I am hypersensitive - and I stopped it immediately preventing me from being sure. I didn't ask her at the first meeting what she planned to do about augmentation. It could be she hasn't worked with anyone who augments so quickly. It could be that she uses the approach that some doctors do - that you just increase it over time until it's a real issue. I will not do that again - that is my only real line in the sand.

Just curious what some of you would do and why.

Views, You are one of the most knowledgeable persons on this board. I think option 1, money aside, is one that you are familiar with and one which, over the years, you have had a lot of leeway, control, and supports over in trying to manage your symptoms. It's hard to give that up for something new (somewhat) and that also seems to fly in the face of your knowledge and experience. I don't recall your experience, if any, with MM but if it has been positive than I can see the attraction of option 1 and that would be very alluring to me with respect to hope with fewer pharmaceuticals. That alone perhaps would push me over the edge. Change can be disconcerting.

Option 2 is the disconcerting one and perhaps even scary based on your use of some words such as "terrifies." Not one you are totally unfamiliar with but one that flies in the face of your knowledge and experiences and initially may be a little more directive and with a little less hands on the reigns. I'm not sure you believe this is the right decision. Other than the phrase "I like the idea of starting over," virtually all of your comments related to option 2 are reasons why you should not vs why you should try option 2. I don't know that you have confidence in what option 2 involves or at least have some unresolved questions and/or concerns about it. Who wouldn't! It doesn't feel, to me, that you are ready to go all in--just yet. What would it take to make you feel more comfortable with this option?


Right now Views, I like option 1. In the back of my mind I'm thinking, gosh darnit, the girl needs a break. For whatever reason, I'm thinking option 1 does that, gives you a chance to catch your breath, and perhaps settle in a bit more with respect to option 2 if that can be done at some point in the future. Like being able to try MM. In the end, I know that whichever you choose will be the right decision.


Wishing all who visit here some peace this night.

[ViewsAskew]

Thanks, Sojourner. I figured that I'd meet with Dr. Park after the sleep study to review. I'd ask about some of the more troubling issues, and then have more to assess. Right now, I just don't know enough about her approach to be anything but apprehensive.

[Rustsmith]

I will agree with everything that Sojourner said. I will add that Dr Park's approach seems to fly in the face of the advice that is given by the RLS experts, those such as Dr B, Dr Earley, Dr Ondo, etc. As you point out, that does not mean that her approach is wrong, but if I were in your position I would want to hear a lot more about the rationale behind her recommendations when they run counter to those being used by the major research hospitals like Johns Hopkins, Stanford and Emory for the treatment of severe, refractory RLS.

Also, I will point out that there are a number of similarities between what I am moving away from and what Dr Park is proposing. I am fortunate to be able to use oral iron, so the infusions don't figure into my situation. But high doses of both pramipexole and gabapentin were what Dr Ondo had me on during my move. I got through it, but the cost was so little sleep that my wife had to do almost all of the driving - and that is normally my role since MS slows her reflexes. I made it through, but that first dose of methadone allowed my body to really feel relaxed after a year of augmentation.

My final thought about Option 1 is that even if all that works, you still have to go back to Chicago to help your husband with the move. Option 1 gives you an RLS vacation, which would be great. But you would still need to go back and would not be able to take the MM. Yes, that would allow you to remain on methadone, get the infusion, etc. It would also allow you time in CA to prepare on that end. There were so many things involving utilities and such on the receiving end that I would have loved to be able to do before we arrived. Our first week in CO was one of the most hectic of my life. We were very fortunate to be able to spend a week in a "hotel" room just down the hall from our condo while we waited for our furniture to arrive, cable TV and internet to be hooked up, got our new drivers licenses, identified new GPs, ... It would have been wonderful that all that sorted out before hand.

[stjohnh]

Ann,

I agree with Steve, mostly for the same reasons. I've never used clonazepam, but lots of folks here have had bad results from it. Happily, I've not had to transition to methadone yet, but it seems to be standard of care for severe RLS and my personal experience is that small doses of multiple meds works better than larger doses of one or two.

Access to MM is a big benefit and I might move ASAP if it suddenly became unavailable here in California.

I also like the idea of alternating meds, and had been planning on doing that a few months ago, but I have been doing so well on low doses of mirapex (which only works for me if I take the several other meds along with it) I have not proceeded with my alternating meds plan. However, I am very leary of tolerance and augmentation, so am diligent in avoiding any dose escalations, and plan on alternating if symptom control worsens on my current doses of mirapex, kratom, MM, and gabapentin.

[Polar Bear]

Ann, when I read your Options and before reading the responses, the one thing that reached out to me like a light bulb was your lack of confidence in Option 2.

You are going to move to California next Spring, you already have regular (if infrequent) appointments with Dr B. He knows and understands you well, you know that you can work with him.

I'd be going with Option 1 and get as prepared as possible (infusion etc) for the months back in Chicago prior to your eventual move.
What about having to pay for all of this - or is it indeed possible to consider your move to California as commencing with your visit and work out something with regard to medical insurance.
Then there's making inroads for your move, sorting a driving licence and I'm sure other matters.

You are so knowledgeable and aware with regard to RLS, leagues ahead - but even I am asking myself, where is the big advantage for Ann in Option 2 ??
Why ??
It's as if I can sense your fear and uncertainty with regard to Option 2.

Whereas, does Dr B make you feel more trusting, do you feel like he provides 'understanding comfort'.

[debbluebird]

It seems to me that this new doctor is wanting to do things that you've already tried, or that you know won't work. Plus, it doesn't seem like she has listened to you.
My new doctor wanted me to increase the Mirapex when I wasn't sleeping. I refused. I will not go through that again.

[jul2873]

Hi Ann,

I don't know anything, really, about medications except for kratom, but I was a Navy wife for years (moving every 3 or 4 years) and then sold real estate for a number of years.

So here is my two cents about your move. The easiest way, if you can do it, is to buy or rent a place in California, and have movers come into your house here and move the stuff you clearly know that you want. Tag the stuff you want them to take. Don't try packing things yourself, like dishes, as most movers won't insure boxes that you've packed. So let them pack too.

When that's all cleared out, you can rent a hotel for a couple of days, and spend the time going through what's left. What you want you can carry out to your car or a small u-haul truck. Everything else throw away or take to Goodwill. Just tell yourself that if you haven't worn or used something for a year, it's selfish to keep it. Give it away. And don't obsess over stuff.

Then hire cleaners to come into your house, and turn it over to a real estate agent. I always found that vacant, or near-vacant homes sold the fastest. When you get an offer, no matter how low, try to negotiate it. Almost always, your first offer will be your best. Hanging on to a house hoping to get higher offers is usually a fool's plan.

Good luck to you. As far as doctors go, I think you should stick to your instinct. Whatever seems best . . .

Mary

[ViewsAskew]

Thanks for your ideas, Mary. The good news is that we don't have to worry about selling a house! And, we're renting for now when we move. But, we do have some relatively costly items that we will not keep and need to sell - audio equipment, hand blown art glass, grinders, etc. And a grand piano....husband is in charge of that .

The California part is up in the air. We may leave what we're keeping in the house for a month or so and stay with my cousin while we find a place, find work, etc. Then bring what we need and donate anything left. That is the preference, but it may not work that way!

[ViewsAskew]

Polar Bear - I was thinking that if I do the California thing, I'd fly out and get a drivers license. My cousin will create a lease for me and I can move my cell phone coverage to CA. Those two documents allow me to establish residency and to switch my insurance to the California system. If I could do that in August, I'd be covered by September. Worst case would me I couldn't get insurance until October. I'd have a deductible, of course, so I may decide not to have the sleep study here after all and see if Dr. B wants one. Then, essentially, I've moved earlier than husband, even if I come back here for 6 more months before we officially move.

And you, and several others, are right. I don't have any confidence in Dr. Park - that's one of the reasons I asked you all about it. I didn't want my concerns and hesitancy about her ideas to keep me from doing it if it made sense from a medical perspective. I don't think it does, but I'm depressed, not sleeping well, and have an instant emotional reaction to long term DA use as well as benzo use. I'm not neutral regarding these! Her ideas about infusions and opioids sort of threw me- I didn't really recover my thoughts until I left because I was replaying all I had read and wondering what the heck I missed and how she could see it so differently. That kept me from focusing on some things like, "How the heck am I going to keep from augmenting?????" So, I didn't ask some critical questions.

[ViewsAskew]

Deb - I felt exactly the same. What I didn't want to do was knee-jerk about the pramipexole and say no to everything if something in it made sense.

[ViewsAskew]

Thanks, Steve and Holland.

I think both doctors agree that smaller doses of multiple meds are good. I've been using methadone for many years and it is part of the problem. I likely should have said more about my current status as most of you don't likely have my meds and history memorized, lol.

Infusion:
The second infusion in 2015 resulted in 45% reduction in meds for several weeks and then over the next few months, I had to keep increasing until I was back to the doses I was taking before the infusion. I wanted a third infusion - and Dr B agreed - where we would find out if this could keep my iron over that 200 mark (about when it stopped working) for a longer period - many month? - and if I could keep my symptoms and meds reduced.

Current meds:
Since June, have been taking: pramipexole, gabapentin, kratom and D-ribose Sunday through Thursday; methadone on Friday and Saturday. Prior to that, I'd been taking methadone daily, just a low dose during the week to prevent the crappy feelings that go with withdrawal, then more on the weekends. I spend the month of May stopping it, so I am no longer dependent on methadone.

Issues:
I cannot use methadone daily - I had tolerance and stopped taking it daily around 5-6 years ago. Also, it's always had a strong hyper-alerting effect and caused daytime fogginess - even if I didn't care about tolerance, I don't want it as my main drug. I cannot take a DA regularly; between augmentation and side effects (inability to orgasm, extremely scattered thoughts, frequent awakenings at night, and many more), I hate them, but they allow me to deal with tolerance. By day 4 after stopping the methadone, even the kratom and D-Ribose don't keep me asleep long enough, so sleep is fractured and I am tired all day. On the weekends, because there is no build up of methadone in my system, the first night I don't sleep much at all and the second night is only a bit better. Additionally, since I don't take methadone regularly, the itching that eventually went away when I originally started it is back with a vengeance. I want less brain fog, better sleep, fewer symptoms, and to see if I can get some kind of a schedule.

Drugs used over the years:
DAs: pramipexole, Sinemet, ropinerole and rotigotine
Alpha 2 Delta ligands: all three gabapentin versions plus an anti seizure drug topirimate
Benzos: clonazepam and temazepam
Opioids: oxymorphone, oxycodone, hydromorphone, methadone, tramadol
Other: trazedone

If I were in charge:
1. Switch out pramipexole for ropinerole just to see if the side effect profile is the same. They are different enough that I might not have the same issues with inability to orgasm and maybe the awakenings at night. Rotigotine had the same side effects as pramipexole, so I may just be out of luck with it, but worth a try, but it works on all receptors. Since ropinerole and pramipexole work on different ones, my hope is that the one that ropinerole doesn't work on that they do is the one causing me the problems. If not, I tried.

2. Try MM instead of gabapentin when I use the DA to see if it keeps me asleep better.

3. Reduce methadone by 50% and use a shorter acting opioid with it on the weekends. When I tried the shorter acting opioids in the past, they didn't last more than 2.5 to 3 hours. By the time they worked enough to get me to sleep, I'd wake up 2 hours later with symptoms. I'd have to get up, wait until I could dose again, dose, then wait for it to work, etc. Not a good night's sleep. I was talking to another member and he pointed out that in the Foundation video on opioids, Dr. Earley pointed out that using two opioids can be effective. Alternately, I could switch out methadone for ER Oxy plus a short half-life opioid and see if the reduced half life would help. There are a few other options in here.