Furious....and scared

[doety]

Ann: Why can't Dr. B just order it for you???????

[debbluebird]

I'm so sorry that the old doctor wouldn't see you. What is wrong with these doctors ? They have forgotten what it means to be a doctor. I'm glad you are seeing Dr. B.

[Polar Bear]

You are spending a lot of money to see Dr B...... you are paying for hope and confidence in someone who has helped you before

[ViewsAskew]

Good news and bad news all rolled into one....can u get through till then medicinally ann?

I have to use Mirapex every other day - the one I stopped because it makes me suicidal....not exactly what I want to do, but I have enough to alternate the two until then.

[ViewsAskew]

Ann: Why can't Dr. B just order it for you???????

I have no idea if there are laws or it's just his policy. As long as he physically sees me once a year, he'll send me whatever I need that fits in our treatment plan. Or, if a doctor here would see me, he'd tell them to. But, he can't/won't without one of the two.

[ViewsAskew]

I'm so sorry that the old doctor wouldn't see you. What is wrong with these doctors ? They have forgotten what it means to be a doctor. I'm glad you are seeing Dr. B.

Third doctor to refuse to prescibe it. I feel like I keep hitting the Lotto for Losers!

[ViewsAskew]

You are spending a lot of money to see Dr B...... you are paying for hope and confidence in someone who has helped you before

That's exactly right! I feel 100% better even though my credit card balance just got heftier!

He already emailed me back and has some ideas.

[rthom]

A ray of hope! Glad to hear it.

[cornelia]

I'm so pleased that you will see dr B. Gosh, what relief! He even says he has plans, quite hopeful that sounds.

Corrie

[doety]

Ann: I know I said marijuana didn't work for me -- but, oddly, it did last night. I got RLS about 3 p.m., went swimming, which postpones it. About 6, finally took 1/2 Mirapex, didn't touch it. About 8, took Tylenol 3 and a whole Mirapex. Nothing would make RLS stop. I ate a little "edible," and finally passed out. Maybe I would have passed out anyway, but I'm thinking maybe it mixes well.
Tonight I'm going to try a Temazepam capsules with Mirapex. If it isn't augmenting now, we know it will.
I wish there was some way you could try MJ. I wonder about trying some when you're in California....still not legal, but easier to get. Maybe ask Dr. B's opinion....you're tried everything else. I don't think it would work by itself for you, but might backup other things. If it worked, go home and find someone with a plant, grow it in your basement.
I've had three acupuncture sessions -- after the first two, I stayed up all night (so, actually that gave me info...something was going on). After the third one, sleep was good - but with meds of course. I'm going to continue for a while to see what happens.
I so hope you're getting some sleep.

[ViewsAskew]

Thanks, doety. Yep, I'm sleeping relatively well - not great, but decent. I run out of my normal regimen before I get to see him, so I'm mixing it up a bit - some methadone here, some Mirapex there, some Tramodol when I wake up moving, etc.

I wouldn't mind the MJ, but I just had to have a drug test for a job. If I'd been using it, I'd have been denied the job. I wish we'd get over our Just Say No debacle and move into something more civilized! On that track, I was listing to Public Radio on my way shopping today. The Rockefeller sentencing guidelines regarding drugs went into place about 30 years ago. I listened to the story of a guy who ended up serving 15 years for one drug infraction - no parole. How we think that helps, I'll never understand. Of course, it's too costly for drug counseling/rehab/alternate sentencing...but we can pay about 55K a year to keep him incarcerated and not helping society in any way. Oops - off my soap box...

[doety]

It is infuriating. I had a bit of my magic chocolate bar last night and, mixed with a few other things, gave "depth" to my sleep, sure you know what I mean!
I had asked my doc for Temazepam and Tylenol 3, so last night I used the Temazepam and a small amount of Mirapex. I'm assuming I can't just stop the Mirapex, but what the heck, I'll try that tonight. The rotation idea seems to work well...maybe I told you that when I told my doc, he was just thrilled. It was a new idea for him. Since I'm his 'worst case" I think he likes learning from me and he can use it on other patients.

I've also added harder exercise to my routine, like I used to. Everyone knows you have to hit that "sweet spot," not too much, not too little. But when I was getting so little sleep, I couldn't, and I got out of the routine. Now I'm back at yoga twice a week, walking, even biking. It was hard to get back into -- even gentle yoga can cause twinges or pains which set off WED. Anyway, feels like I'm going in the right direction.

My daughter and I had a long talk last week -- she finally asked her boyfriend to move out because she can't sleep with him. She just turned 44 and if she follows my pattern, menopause will be awful. She won't admit she has WED, but it's hard to watch--this guy is so nice. I don't talk about this stuff to her, I just try to listen. She's seen what it's done to my life and I can't imagine how she feels about it. Maybe like so many other things -- I'll never be fat, etc. -- she's in denial.

I'm glad you're getting by, sort of. I hope more relief will happen very soon.

[rthom]

Ann I like your soap-box. This is the one thing that you can not do yet that you can get into trouble for--your not addicted yet or causing trouble in society yet----yet you get a rep. and maybe even punished for it......

Doety I'm glad you can increase your exercise a bit again--I remember you talking about your frustration about it, about a year ago I think---were you jogging too? Hope your dughter gets lucky and is spared the bulk of our experiences with this thing.

[ViewsAskew]

My flight to CA was OK. Lots of turbulence - 4 hours worth - but it wasn't severe. But, mild to moderate turbulence for 4 hours is still very annoying! If I
'd had WED, it would have been horrible - the seatbelt light was only off for about 10-15 minutes during the 4 hour flight.

I didn't sleep that night - my flight was at 6 AM and I had to leave the house at 4, so I just stayed up. I read at the terminal, but by the time I got on the plane, I was ready to sleep. I slopt about 2 hours before the WED awakened me. I took two tramadol, read a bit, then went back to sleep. WED awakened me again, but we were only 15 minutes from landing, so I managed to do leg exercises in my seat until we could get up and deplane.

I landed at 8:30 and the appt wasn't until 1:30, but driving in a unfamiliar place with 3 hours sleep didn't seem too wise, so I just drive to the area of the appt, found a shopping plaza with a Starbucks and hung our there until lunch. After lunch, I went to his office, hoping to sit in the waiting room until the appt, but they are closed from 12 to 1:30. So, I sat in the loobby, reading a book.

Office staff was very nice, as they were last time. I updated my records and they put me in a room. He now has sound machines in each room- the kind you can use at night to listen to the ocean or birds, etc. my blood pressure was high again (136 over 88), so I did some breathing exercises while listening to the ocean .

He was running late because he'd been giving a presentation about WED over lunch - he really is a tireless advocate for us. We talked about my last doctor and what happened - he said he hears these stories less than he did ten years ago, but still much too frequently. We talked about a lot of other things, too.

One thing we talked about was Horizant - that is the extended release gabapentin encarbil. He said he's seeing good results with this compared to plain gabapentin. He also said that in most people the excessive sleepiness disappears in 2-3 weeks - I've heard that before! While it was studied for once a day use, some people are using it twice a day with good results - that may be helpful to someone here. It can cause suicidal thoughts in 1 in 500, so after my issues with depression from low vitamin D and then again from Mirapex, I'n a bit leery. He thinks we might be able to cut the Methadone in half by using it, so I'm willing try it and see. Because I know he believes me, I never worry that I'll be stuck with something if I think it either doesn't work or the side effects aren't worth it.

In the end, I left with scripts for methadone to cover me for 90 days, a sample of Horizant, and a sample of Nuviogil. And, of course, a promise that he'll stay in touch through email if I need anything.

[rthom]

Ann I'm glad it went well for you, you must be much relieved. It's great knowing there is someone out there that will do so much. Thanks for sharing the info, who knows it , may be the answer for someone.... Have a safe flight home!