A Surprisingly Good Dr.'s Visit! Keep a Sleep Diary!

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Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

A Surprisingly Good Dr.'s Visit! Keep a Sleep Diary!

Post by Sole »

The Dr. appointment I've been dreading went surprisingly well this morning. I took with me, the sleep diary I've been keeping since I started taking Mirapex, the Algorithm posted by Heronak and the 37 page Treatment for RLS/PLMS publication found here. http://www.rlshelp.org/rlsrx.htm

The sleep diary is what really helped my visit. It provided her with an excellent visual of what I've been experiencing these past ten days. Here's a sample of my diary. I highly recommend keeping one, especially if you have a Dr. who is uncooperative or ignorant concerning RLS.

"Day 6 on Mirapex. Last night, at 10pm, I took .25 Mirapex. No Klonopin. I headed up to bed at 11pm. I could tell it was going to be a rough night. My legs were a bit restless. Which was disappointing because it had been so nice to watch the drug work so well for the first few nights. AFter tossing and turning for 40 minutes or so I got up and took .5mgs of Klonopin. Stayed up until I was exhausted, which was 2am. Tossed and turned for another hour in bed and finally went to sleep. Woke up at 6:30 with my legs in full force. No headache today but the dull ache is back in my shins. I'm baffled, to say the least. 3.5 hours of uniterrupted sleep."

Each entry is ended with the number of uninterrupted hours of sleep I get each night, in bold. She was totally taken aback by how much I truly lack sleep. I guess it's one thing to SAY how much you sleep and quite another for someone to READ it. For my doc, reading my journal was a big eye opener. At first, she concluded that the Mirapex wasn't working and was surprised when I told her it WAS working. It does its job by calming my legs but I am still unable to get sleep due to the pain and anxiety.

I asked her for Ultrim and she was immediately willing to prescribe it. She asked me to continue the journal, calling it an excellent teaching tool for her. I see her again, next Thursday to see how the Ultrim is working out. If my sleep hasn't improved she wants to find a way to get a referral for a sleep study, without using RLS as a reason for it. She says that because I have state insurance, they will deny the request for a sleep study, if we use RLS as the reason. Go figure.

She is still determined to get me off of Klonopin. She says that if I were having symptoms occasionally, she wouldn't be concerned but that since it's severe and everyday, she doesn't want me on it. And that's ok with me, as long as she's willing to keep working with me to find a drug combo that works.

So tonight I will take my first dose of Ultrim. I'll post my results under the Ultrim thread. I hope this works. I so need to sleep.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

ARGH!!!

Post by Sole »

My relief is short lived today. I went to pick up my prescription for Ultrim. The insurance wouldn't pay for it! I called them and they said it wasn't an approved drug for pain associated with RLS. ARGH! I definitely can't afford to pay for it out of pocket so it's back to the drawing board with the doc. I truly hate insurance companies. Who are they to play doctor???
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Guest

Post by Guest »

dear sole, I cant believe you got one door open just to have another one slamed in your face that is so frustrating. You must have been ready to shoot somone I would have been. Yhat was a really good idea to take in your sleep journal I am going to follow your example thanks Im sorry you didnt get your meds I dont have insurance at all so I know how expensive that medication is, it comes down to sleep or food at my house my heart is with you tonight. I know I will be up late so if you want to chat I will be here god bless you. Lyndarae

fussybird

Oh my gosh...

Post by fussybird »

I'm so sorry the insurance is not cooperating!

Maybe your doctor can put in a special request for the med? I had my doctor do that once (an unrelated situation). The meds I needed weren't covered, but he called the insurance and explained that it was the only one that would work for me, so they agreed. It took a few phone calls, but it worked out. I don't know if that can be done in your case, but thought I'd tell you what worked for me in case it could somehow help.

Hugs,

Rita

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Did you?

Post by jumpyowl »

Sole wrote:

The insurance wouldn't pay for it! I called them and they said it wasn't an approved drug for pain associated with RLS.


I hope you did not stop there?

I would have asked "approved by whom?" FDA? FDA has not approved ANY medication for RLS (it is off label, so Ms. B could have been a bit more clever). By the internal drug committee of the insurance company? (they may not admit that but they will have to say something.) Which you can then challenge!

Make sure you spell the name of the medication right. It is ULTRAM.

However, the easier way to do it is to find out what condition they allow ULTRAM for, for example "sleep disorder", or "leg pain", or peripheral nerve pain," or whatever, and tell Ms. B to write the prescription for that condition. She can and possibly should help you there.

I agree that insurance companies can be a pain. One has to fight them or outwit them.
Jumpy Owl

Guest

Post by Guest »

Anonymous wrote:dear sole, I cant believe you got one door open just to have another one slamed in your face that is so frustrating. You must have been ready to shoot somone I would have been. Yhat was a really good idea to take in your sleep journal I am going to follow your example thanks Im sorry you didnt get your meds I dont have insurance at all so I know how expensive that medication is, it comes down to sleep or food at my house my heart is with you tonight. I know I will be up late so if you want to chat I will be here god bless you. Lyndarae


Thank you for the kind response, Lyndarae. No, I wasn't ready to shoot anyone. It's par for the course, I've found so I just keep plugging away, until things work out. Besides, it was too darn hot to kill anyone yesterday. 104 here in Oregon!!! Today it's only going to be 100. Guess I should get my sweater out. :-)

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Re: Oh my gosh...

Post by Sole »

fussybird wrote:I'm so sorry the insurance is not cooperating!

Maybe your doctor can put in a special request for the med? I had my doctor do that once (an unrelated situation). The meds I needed weren't covered, but he called the insurance and explained that it was the only one that would work for me, so they agreed. It took a few phone calls, but it worked out. I don't know if that can be done in your case, but thought I'd tell you what worked for me in case it could somehow help.

Hugs,

Rita


Yes, my doctor is fighting for me. It should take a couple of days. Hopefully, she'll have some luck. Thanks for the hugs. I sure need them right now.

Sole
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Re: Did you?

Post by Sole »

jumpyowl wrote:Sole wrote:

The insurance wouldn't pay for it! I called them and they said it wasn't an approved drug for pain associated with RLS.


I hope you did not stop there?


Of course not! I called Ms. B and talked with the nurse. I told her that Ms. B needed to submit what is called a "special request" for the medication. Kind of like a "prior authorization" but one step above. She had never heard of such a thing in her 20 years of nursing but said she'd talk with Ms. B and get on it. A coupleof hours later, the nurse called back to inform me that they were sending in the appropriate forms and that Ms. B had called in a prescription for Vicodin to my pharmacy. I was very surprised, to say the least. So I took 2 Vicodin 500mgs each, about 30 minutes before bed...along with .5 Mirapex. 30 minutes later, I was in the bathroom throwing it back up. Vicodin has always made me queazy but this time, it made me down right ill. I guess I should have just taken 1 pill but the prescription said to take two, every four to six hours. Won't be doing that again. It did help with the pain but I woke up constantly. Is that normal? I figured Vicodin would be more sedating.

I would have asked "approved by whom?" FDA? FDA has not approved ANY medication for RLS (it is off label, so Ms. B could have been a bit more clever). By the internal drug committee of the insurance company? (they may not admit that but they will have to say something.) Which you can then challenge!


Yes, I will certainly challenge them, if they deny the "special request." It shouldn't be hard to prove as every drug we use for RLS is "off label." If their logic in denying the Tramadol held any validity, they would have to deny the Mirapex too. Which they didn't.

Make sure you spell the name of the medication right. It is ULTRAM.


She prescribed Tramadol.

However, the easier way to do it is to find out what condition they allow ULTRAM for, for example "sleep disorder", or "leg pain", or peripheral nerve pain," or whatever, and tell Ms. B to write the prescription for that condition. She can and possibly should help you there.


Excellent. Yes, if the "special request" is denied, I will help Ms. B write a Rx that should get approved. I will call the insurance company on Monday and get that information for her.

I agree that insurance companies can be a pain. One has to fight them or outwit them.


How does one outwit idiocy?? :-)
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Anonymous

Post by Anonymous »

(((((((Sole))))))))

I have a problem with vicodin, even though it helps the RLS it also keeps me awake! I feel like I'm between this drowsy, close my eyes and want to go to sleep feeling and yet my mind is in this awake, let's get 100 millin things done before morning feeling!

:lol: No RLS for me with vicodin...but it just gives me a new set of problems.

I have found that if I take 1/2 a vicodin 1 hour before bed and then the other 1/2 30-45 minutes later I can usually do okay...usually. But it wears off within 3-4 hours...and the cycle starts again. It's not perfect for me.

Be careful when you take vicodin to sit up for at least 30 minutes and to drink lots of water.

Of course, if it's making you nauseous, my input is useless. Sorry.

I guess I just wanted to say it does keep me awake. Not the effect I'm looking for, :lol:

Hugs,

Rita

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Post by Sole »

Glad to hear I'm not the only one who has troubles with it. Why does it keep us awake, I wonder. I wonder if Ultram will have the same effect. I hope not....assuming I can get approval for it.

Definitely try the resistance thing. Maybe it will help a little.

I can totally relate to your feelings of relief over finding others who have RLS. I didn't know it was a real disease for 12 or so years. It's been so awsome, for me also, to find a site with people who can relate to what I'm going through. Not to mention they're all extremely compassionate and full of useful information. Very good company indeed! :-)
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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