Finding a doctor who can prescribe Opiates

[Midnightmarathon]

Hi,

I have been traveling over 300 miles to Baltimore for the past 3 years to receive treatment at John Hopkins. This was supposedly one to the 6 best centers for RLS treatment in the country.
When I was first seen there, I was told I needed to go on Methadone due to the severity of my RLS. I was really scared to do this but also very desperate, so I did it and went on 10 mg. I didn't tell them, but every few months, I would wean myself off of it a month to 6 weeks, so my body didn't get too used to it. This was a good thing because half of the time I couldn't get through to them to refill my script and it would get done a week late, so I need to have some extra on hand to see me through. Even so, after about a year, 10mg wasn't enough and they increased me to 15mg. During this time, I had a scrip for Xanax that I filled about once every 8 or 9 months. I didn't take more than 4-5 pills a month, but I have a lot of anxiety over this and other issues in my life which are also extreme. I also suffer from very severe Chronic migraines which I get about at least 20 out of 30 days a month. I am completely disabled.
By Spring of this the 15 mg was not even working and I saw a movement disorder specialist at Hackensack medical center in NJ. This is a large medical Center and this doctor came highly recommended. I had to wait 6 months for an appointment.
He suggested taking me off of the methadone and trying Nuepro 8mg and Valium 5mg for a while then go back on the methadone when this stopped being effective again. He unfortunately was not able to prescribe opiates so he wouldn’t be able to give me methadone that time came. I was excited to try something new. Little did I know that I was about to totally screw myself over!!!!
When I went to fill the Valium, I explained everything to the pharmacist. I did not request my methadone from JH.
Well, the valium got filled and I used it that month but next thing I know, they won’t renew it, and when I call John Hopkins, they ignore my phone calls until I calls about 5 times when finally, the doctor calls my directly.
He was very angry that I had gone off of the methadone and he told me in no uncertain terms that if he saw me refill the valium OR my Xanax (which I had been on all along!!!!) he would not give me the methadone anymore. And I had a appoint in 2 weeks.
I was besides myself after this phone call. I feel like I am now TRAPPED ON METHAONDE!!!!! I barely slept at all the next 2 weeks and have been such a wreck that my daughter said screw it, refill your Xanax and you can talk to him when you go in.
But when I tried to refill that, my primarily care doctor (who ordered it) told me, that the state let him won’t refill it.

Sorry this is so long. So, I went to see the John Hopkins doctor and guess what HE wants to do??? He wants to put me on MORE methadone!!! I told him I didn’t want this and asked what else we could do and he pretty much told me take it or leave it.
So I can’t get Xanax which I desperately need but I CAN get more methadone which is 10x stronger!!! How does this make sense???

I need to find a Local (NYC is fine) who can handle my care. I have called around asking how you find a doctor who can prescribe opiates for RLS and all I hit is brick walls. My insurance company says I have to call the doctors and the doctor offices tell me they don’t give that information out. So how am I supposed to find someone?
I need to find a doctor that is able to prescribe opiates but doesn’t want to just push them nonstop.
Advice please!!! Thanks

[ViewsAskew]

So sorry to hear about this. It really is a horrible situation for so many of us, and worse for those with complex issues that require more than one substance that they watch like hawks. I know that no one wants to hear my solution - I moved. I left my long-time home and my family in the Midwest and moved to So Cal so I could be by Dr. Buchfuhrer; there are two other Quality Centers in California, so that means I have access to three places.

Because of the public and govt outcry over the opioid crisis, doctors in the US are understandably spooked. That doesn't mean they should treat patients as they do!I think many are truly worried about losing their licenses...but I wonder how many have and if it is a rational fear? I really don't have a clue.

I am in a similar situation in that I have had to increase methadone - I also try to stop it regularly, but still need more. I use the "evil" pramipexole part of the time, to keep the methadone dose lower. That works for me. I have to stop the pramipexole regularly, too, so I do not augment. But, it is a dance that I can do and know the steps to.

Has anyone checked your ferritin levels and has iron been broached at all? It certainly does not help everyone...but about 70-80% are helped. Only about 20% have symptoms alleviated, but the rest have partial reduction. I am in that boat.

Are there any other anti-anxiety options for you? I am one that reacts very badly to Xanax and its close relatives, such as clonazepam or diazepam. It took me 7 months to get through withdrawal from it and I only took a small dose for a couple months. Doctors are becoming more and more concerned about these options as about 50% of those who take them go through very difficult withdrawal. Some people take two years to go through a very slow tapered withdrawal!

Hope someone has some ideas for you.

[Midnightmarathon]

Thank you Ann. Unfortunately, moving is not an option for me since I am a single mother of an autistic young man and a daughter who also has significant issues and is no where near able to support herself. I am trying to get my son placed in group housing but it is a long and difficult process, even with emergency circumstances. I feel like everything that the government controls is a disaster.
I just can't understand how this doctor wants to INCREASE me on methadone when I can't get a much less strong drug and much more importantly how I get the valium refilled so that I can get OFF of the methadone. How do I find a doctor who will help me DECREASE on opiates? I guess that should have been the title of my post.
It's just nuts

[Midnightmarathon]

I did get an appointment with a doctor at Columbia Presbyterian in NYC but they can't see me until 10/29 and they wouldn't tell me if they perscrible opiates or not. Said I had to come for a consult to find out.

[Rustsmith]

Midnightmarathon, although they are not in NYC, there are two Foundation Quality Care Centers that are "somewhat" close to you. One is the Yale Sleep Center in CT and the other is the Mass General Hospital in Boston. Both of these will prescribe opioids. The wait for an appointment will not be any shorter than the one for Columbia, but at least there will not be any question about whether you can get back where you need to be.

[Midnightmarathon]

Thank you Steve! this is a big help!

[ViewsAskew]

Thank you Ann. Unfortunately, moving is not an option for me since I am a single mother of an autistic young man and a daughter who also has significant issues and is no where near able to support herself. I am trying to get my son placed in group housing but it is a long and difficult process, even with emergency circumstances. I feel like everything that the government controls is a disaster.
I just can't understand how this doctor wants to INCREASE me on methadone when I can't get a much less strong drug and much more importantly how I get the valium refilled so that I can get OFF of the methadone. How do I find a doctor who will help me DECREASE on opiates? I guess that should have been the title of my post.
It's just nuts

Oh, it's crazy I had to move! And, no question, many of us could not do it.

It sounds as if you have your plate full.

I think his concern is that you are taking them both; together, they could be lethal. Valium, in many ways, as well as all the sister medicines, are not as benign as many people think. Most of us who land on opioids are there because the other options do NOT work. That they do for you is, I think, a bit of an anomaly. My guess is that he/she was coming from that perspective - thinking that there really is only one option when you get to methadone - to stay on it. Regardless of why he/she did that, you want to reduce it and see if that works for you long term, so let's see what we can all come up with.

My best guess would be to try a pain clinic or a drug rehab. Hopefully some others will have some ideas.

[badnights]

Hi midnightmarathon - I love that name.

It is possble (as Ann has already noted) that he only refuses to mix methadone and Xanax for safety reasons. Did you ask him what his reasoning was? If you didn't mention that you were taking Xanax occasionally, he may have been surprised to learn about it and that might have colored his attitude.

I don't think your cause is lost. If the JH doctor just doesn't want to mix methadone and Xanax, then he has to come up with a proposal for dealing with your anxiety. Maybe you need to make sure he knows all your health conditions, how they affect you, and what meds you take for them.

...more importantly how I get the valium refilled so that I can get OFF of the methadone.

There is something that is critical for you to be aware of: Valium does not treat WED/RLS symptoms. It might in fact make them appear to be worse, because it causes mental relaxation which triggers the WED/RLS. So it will not help you get off methadone. But about the methadone: I understand that you don't want to develop tolerance and I applaud your initiative in stopping periodically to re-set yourself. Beyond the desire not to develop tolerance, why do you want to decrease the methadone? Does it have unbearable side effects?

There are three main classes of meds that work for WED/RLS: opioids, a certain type of anti-convulsant, and dopamine agonists (such as Neupro). Dopamine agonists are dangerous because they tend to make the disease worse. The anti-convulsants can be useful but tend to be ineffective in severe cases. The opioids are usually effective but often have bad side effects. So it's an experimental process no matter how you look at it.

[QyX]

Hey,

Benzodiazepines like Valium (Diazepam) or Xanax (Alprazolam) can offer short-term relief for RLS but I am not aware of one single case where those drugs worked longer than a few weeks.

The only Benzodiazepine we know who does have significant long-term effects is Clonazepam (Klonopin, Rivotril).

When 10 to 15 mg Methadone is not effective anymore for your RLS, then it is highly unlikely Valium or Xanax will improve your RLS symptoms for it to be okay.

You have to understand that taken over a longer period of time on a daily basis, Benzodiazepines are really nasty drugs. It is something completely different when you take a few pills of Xanax every month compared to long-term daily treatment with Valium. No surprise the doctor snapped at you. You going to a different doctor for the same condition and taking drugs who can have problematic interactions with high potent opioids.

Are you currently taking Benzodiazepines on a daily basis? This is not clear to me from your postings.

When you don't want to take Methadone or other opioids / opiates, what would be the alternative?

As I see it, there was a reason you started with opioids. And at that time you were already taking Xanax. So obviously the Xanax is no solution for your RLS.

There are other opioids than Methadone available, drugs like Oxycodone, Hydromorphone and Morphine. Some patients tolerate them much better than Methadone but just because opioids work very well treating physical symptoms like pain and restlessness doesn't mean they also work well treating insomnia. Unfortunately they often make insomnia worse or cause it in the first place.

I also don't understand: you write you take only 4-5 Xanax pills per month. So the way I understand it, the Xanax can't be that important for your sleep when you only take once per week?

If you have the expectation that Valium and Xanax can treat your RLS symptoms, I must say this is not going to work. Maybe with Clonazepam but when 10 mg Methadone don't fully cover your symptoms, it is rather unlikely Clonazepam would be effective enough.

That said, there are other drugs who could help with your RLS and also your anxiety. The first drug that comes to my mind is Lyrica (Pregabalin) but Gabapentin might also be effective.

Also medical Cannabis might be an option for you, especially strains with a high concentration of CBD. CBD is known to be highly effective against anxiety and social phobia in many cases and it also doesn't make you high.

You have plenty of options. Just make sure you do not suddenly crash into Benzodiazepine withdrawal symptoms from stopping Valium too fast.