Restless Legs Syndrome (RLS) Discussion Board

"I have traveled from Seattle to Baltimore to the prestigious Johns Hopkins Medical Center because my doctor recommended that I do so. Between my current doctor in Seattle and my former doctor they have seen thousands of patients with RLS, but never have they seen a worse case than mine.

Not exactly the news I wanted to hear but instead of giving up my current doctor sent me on a very long journey to see a Guru, a Wizard, a Doctor with many letters behind his name. I am so glad he did! I think he knows how to fix me, to reboot my brain.

It won't be easy. Hell comes to mind. I don't think he likes me much, I made a terrible impression. Everything I had wanted to
do, planned to do - I failed miserably. My only excuse as I write this is to say after the all day flights I was exhausted. I had brought my wife with me to help but she is still recovering from a broken leg so it was like the blind leading the blind. I drove to the campus only to be sure where it was, then we ended up staying instead of going back to hotel for my list of prescriptions and my notes. I was totally unprepared and he knew it. I don't know who he was more pissed off with, me or my sleep doctors. It was like
an episode of House (a TV show about a brilliant but often ticked off doctor).

Then when he discrbed what he wanted me to do I teared up. He must think I'm a total loser. I will describe what he wants me to do in my next post, tomorrow when I have my laptop back. I'm writing this in our hotel room in Baltimore on a Kindle Fire chicken pecking the letters. I will just say for now that it involves making some changes over the next 2 weeks and then the "fun" begins and I doubt I will be able to work for a month...

It sounds like this is going to be an arduous journey and we will be interested to he what the Dr has recommended.

I'm sorry that you felt unprepared for your appointment. What with the stress of the journey and your built up hopes it's easy to see how your emotions would be up near the surface.
But perhaps it did no harm, in fact it is likely to have relayed to the Dr just how severe are your symptoms of WED.

It sounds absolutely worth it that you went.

Ah, per his feelings about you...doesn't matter as long as he solves your problems. And, who knows? In five or ten years, you might laugh together about what a wreck the first meeting was.

Well, I think PB is right about the condition that you were/are in, during the appt. If he's as good as we all hope, then he should have seen that. I'm glad you made it there and thanks for letting us all know how you are.

Polar Bear wrote:It sounds like this is going to be an arduous journey and we will be interested to he what the Dr has recommended.

I'm sorry that you felt unprepared for your appointment. What with the stress of the journey and your built up hopes it's easy to see how your emotions would be up near the surface.
But perhaps it did no harm, in fact it is likely to have relayed to the Dr just how severe are your symptoms of WED.

I hope so, I hope you are right.

Yesterday we got home at 11 am pacific time and I think now we both had cases of jet lag. We just sat in front of the boob tube the rest of the day (besides putting things away and doing some things around the house) and went to bed early, at about 7pm (but that would have been 10 pm eastern time, we were so confused ). My wife is still in bed but I woke up at a little after 2am. 7 hours sleep (and everyone who are regular severe RLS/WED folks here should know that is almost nirvana sleep ).

ViewsAskew wrote:It sounds absolutely worth it that you went.

Ah, per his feelings about you...doesn't matter as long as he solves your problems. And, who knows? In five or ten years, you might laugh together about what a wreck the first meeting was.

I also hope you are correct .

Today I did exactly what the doctor ordered. I went to bed (not couch) and slept with my VPAP machine on all night (and earplugs). This is the first evening of my 14 days of wearing the mask and going to bed no matter what.

I want to please this doctor, his colleague that I had talked to on the phone when I first contacted them got on me about my weight and I lost 25 pounds so far (from one phone conversation), so maybe there is a method to their madness (as the saying goes). Psychology may be part of their bag of tricks.

debbluebird wrote:Well, I think PB is right about the condition that you were/are in, during the appt. If he's as good as we all hope, then he should have seen that. I'm glad you made it there and thanks for letting us all know how you are.

Thanks for your reply!

We flew there Tuesday, went to doctor Wednesday, and reserved Thursday for if he needed a follow-on appointment, he didn't. Our flight wasn't going back to Seattle until Friday early in the morning so Thursday we rented a car and I drove us to Washington, DC. We went on a 3 hour bus tour of the Capital, a little walking was involved that about did my wife in (with her healing broken leg) but we had an awesome time! I had only been there by myself one day 30 years ago and my wife had never been to DC. For the time we were there it was a beautiful sunny day and it was about 90 degrees (as we left the DC limits going back to Baltimore it started raining very heavily, the windshield wipers could not keep up on high setting). I saw 10 times more in the 3 hour bus tour than I saw staying there all day the first visit.

The tour is called the "Best Tour" and it turned out to be. There was a 6 hour tour but my wife barely made the walking part of this one. She insisted on walking up the steps to the Lincoln Memorial (this was on her bucket list of things to do ), the whole day was fantastic - truly one of the better days of my life, and I know my wife's as well.

I just love your story of the bus tour.
When My husband and I go anywhere new we always start with the city bus tour to get ourselves familiarised and see a little of everything. Then follow up with a further visit if something takes our fancy.

It is good to hear you being positive, good luck with your 14 day sleep & VPAP journey, I will be sending you positive vibes across the Atlantic and right across North America.

The doctor interviewed my wife and I as we sat there talking with him. He took notes on one piece of paper that I could not decipher at all When he wasn't getting the answers he had hoped to get from my wife and I he quickly went through the stack of 200+ sheets of information my doctor in Seattle had sent him, he also went online and looked several items up.

A disclaimer! The following is NOT the doctors words verbatim and I am not even going to mention who it was that I saw at Johns Hopkins (at least for now). I obviously do not have a photographic memory, far from it, seeing that my memory is pretty well shot from what it used to be from the incredible lack of sleep I have had for years and the cocktail of strong drugs, including methadone, a narcotic, that I a have also been taking for years. Also realize that my circumstances are unique so that this is what is recommended for me, not anyone else

1. Immediately set up through my doctor in Seattle a lab test to determine my current iron levels (from having the 3 iron infusions over the last several months). He wants to see several different readings; iron, TIBC, % iron satuation, and ferritin (the same as my last lab test which was before the last two infusions (ferritin was 96).

He needs to have a baseline to work with, later on I will probably have additional iron infusions depending on the results of the lab tests. The doctor was not happy that no one, the hematologist, my sleep doctor, nor my general medical doctor had bothered to find out what my readings were after the last two iron infusions.

2. Sleep in bed with VPAP for 14 days in a row (if I miss a day start over) I must get in the habit of using my VPAP everyday or it will just start the cycle of problems all over again. The doctor said the reason I am having so much trouble is because of my severe sleep apnea. I wake up about 120 times per hour without my VPAP machine. If I have a few bad nights of sleep, especially not using my machine it can disrupt my entire sleep cycle and medications.

He also believes that, even though I attempted to deny it (because I am addicted?), that I have not been off of Mirapex (pramipexole) since at least January of 2006, maybe as far back as the beginning of 2000. He said the first time I augmented (about 2008) he would have never have put me back on it again. He believes that once a patient augments on a dopamine agonist that the patient should NEVER use it again. He thinks it creates a permanent problem within the brain that will never get better again using a dopamine agonist and sets up a vicious cycle (as I have been in for years).

3. Get off of all my medications completely by reducing them over a 17 day period.
Here is the plan as the doctor wrote it out for me to follow:

Day 1-3 Stop Lyrica completely but continue Mirapex (.25 at night) and Methadone (2.5 mg morning, 5 mg lunch and bedtime)
Day 4-8 Reduce Mirapex to .125 mg at night (I take generic pramipexole) and stay on Methadone
Day 9-11 Stop Mirapex and continue Methadone
Day 12-16 Stop morning dose of Methadone and continue nighttime dose
Day 17 Stop Methadone

4. Continue for 10 days without using any drugs (there is a half sheet which spells out the terrible withdrawals involved) and then call him. At that time he may setup an alternative treatment if necessary (so he thinks it is possible there won't be a need for any medications). From what he said though it sounds to me as if I will be on only methadone (Isn't this what ViewsAskew has been doing? ).

This is all fine and dandy but I could not get him to realize that I absolutely need everything I am currently taking. He believes it will get bad after I stop ALL the medications but in reality if I miss a single dose of any of the 3 medications I do not sleep the next day. The reality is that on Day 2 of the 27 day period of reducing/quitting the medications I will not be able to sleep or do much of anything but pace the floor. In other words I will not be able to work for 26 days plus the time it takes to get me back on another medication (if needed) like methadone. I'm looking at, I would say, at least 5 weeks in a row of no work and that will begin in 13 more days when I successfully spend 14 days in bed with VPAP machine.

There is also the possibility that this will not work at all and I will have to return to the pramipexole.

I do hope you give it a try. I know that it won't be easy - at all. And, you may have to take a medical leave to do it. You may already know what is required to do that. He will most likely help you with that.

Many of us here, most recently jakesmom, have been on many different meds, not getting any sleep, and have been in a horrible pattern for years....only to find out that when we really stop the pramipexole - COMPLETELY - we find that it all gets better. It takes at least 2 weeks and upwards of 4. The difference at the end is amazing.

And, yes, I took methadone only for about 3 years after doing exactly what you're doing . Just no VPAP in my case. But, stopping multiple drugs and going through a horrid experience. In retrospect, stopping it wasn't as bad as keeping on it.

ViewsAskew wrote:I do hope you give it a try. I know that it won't be easy - at all. And, you may have to take a medical leave to do it. You may already know what is required to do that. He will most likely help you with that.

Many of us here, most recently jakesmom, have been on many different meds, not getting any sleep, and have been in a horrible pattern for years....only to find out that when we really stop the pramipexole - COMPLETELY - we find that it all gets better. It takes at least 2 weeks and upwards of 4. The difference at the end is amazing.

And, yes, I took methadone only for about 3 years after doing exactly what you're doing . Just no VPAP in my case. But, stopping multiple drugs and going through a horrid experience. In retrospect, stopping it wasn't as bad as keeping on it.

I had thought (in my distorted thinking) that I had gotten off everything, but in reality what I had done (several times) is replace everything else with kratom (and who knows for sure the implications of taking kratom). Thankfully I have successfully used my VPAP (in bed!) two nights in a row. My wife is going to make sure that I go through the entire 14 day plus 27 day plus how many more days it takes to get leveled out again.

I am going into work tomorrow and seeing about taking 5 weeks off via a medical leave. I think it will start on July 15th. I'm sure work won't be happy about it but if I explain to them that I may be coming back as a new, revitalized employee, maybe it won't be so bad. My Johns Hopkins doctor is going to write a letter for me, and if needed, I am positive my doctor here will also (after all he recommended that I go to see the new doctor).

My doctors will help me do this and my wife for sure. The third element of my success will be you guys here. At the Seattle Seahawks football games they talk about the 12th man (the fans in the stadium of course), you guys are also my support and I consider you all the third piece of the triangle of support; doctors, wife, and WED Discussion Board! When my Mr Hyde comes out I will especially be needy here I will keep looking towards the goal of finishing and looking forward to, "The difference at the end is amazing."

Sounds good, I hope you do it successfully the first time--so your previous hell can stop. We'll all be here for you---gggoood luck!

Let us know how it works out with the leave. I don't think they can prevent you, though depending they might not want to pay. As you said, hopefully they see the importance of this to both your health and to their bottom line . It's great your wife is being so helpful. You know we're always here.

Yes, we are all here for you. I think it's going to work.

I'm off to bed and it will be day 4 of 14 days of sleeping in bed with my VPAP, since I kept falling asleep watching a show with my wife just now I don't think I will have any problems tonight. It looks like everything will be a go at work, not official yet, but so far it sounds good from management side. I am hoping to get paid, but I'm not going to count on it, it will be payment enough if this works.