New Year Blues (Whining warning!)

[SquirmingSusan]

Wow. Nothing like the end of another year to make me realize how much of my life I've lost to medical conditions. And the various conditions are not compatible with each other!

I'm really glad that I saw Dr. B and he diagnosed me with narcolepsy. At least I know what I've been up against all these years. And if I do a repeat nap study, now that I'm not taking Effexor, I could probably get the "real" meds, the Xyrem. I had to stop taking the Effexor because it made me unable to sleep at all, ever, but still felt exhausted all the time. No naps during the nap study, so no Xyrem. (It costs about $2500 per month; that's why the requirement of a nap study.) Now that I'm not taking the Effexor, I can close my eyes and be asleep any time of day, and no matter how much Nuvigil I take. Sigh.

And the Nuvigil makes my RLS go nuts. I can barely keep ahead of it with the methadone.

Of course, antidepressants don't help with RLS either. But if I stay a bit under-medicated in that department, it doesn't bother my RLS.

It's just so depressing to think about how much of my life I have lost to being in a sleepy, exhausted fog. And there are so many of us who are in the same boat, whether from RLS, narcolepsy, depression, or whatever. Blech.

[ViewsAskew]

I wish there was a way to make all of this go away for all of us.

I keep thinking that each year will be better, different. I keep getting more of the same. Most times I refuse to let it get the better of me, but sometimes I am unable to feel as you feel, Susan.

I hope you can get another sleep study. Maybe that really would make it be a new year for you. (And I surely hope that you would not have to pay $2500 for the Xyrem out of pocket! And I thought that the $1500 a year I'm paying for levorphanol was a lot...)

[runkrun]

Susan ans Viewsaskew, I noticed that both of you are on or need to take meds that cost WAY too much money for the average person. If your physician or one of his staff call the manufacturer, many are willing to supply you w/ the drug, or give huge discounts. Being in the health care profession myself, I know how frustrating it can be to not be able to pay these staggering costs. We help the patient by supplying samples or changing to a generic medication. Does your insurance pick up any of the costs? Also, I like the rest of you hope and pray for a better 2010 regarding our RLS, medication side effects, restful sleep,etc. I had a very difficult 2009, but, my appt. w/ Dr Silber and a family physician willing to write for opiates, helped me tremendously. Having alot of depression right now, but I see my doc on Tues. and hope she has some answers. God Bless and good luck!

[Neco]

If the opiates are keeping your RLS at bay, you could try introducing something like Remeron, or Luvox. I'd go for the Luvox personally as it doesn't come with extra weight gain and seemed the less irritating of anything I had tried.

[SquirmingSusan]

I know you all understand this too perfectly. You know what's pushing me over the edge? I have a killer sore throat; one of those nasty ones with white puss that just hurts like heck. And I'm too tired to drag myself to the doctor to get it cultured. Maybe tomorrow if I can be up at 8am to call for one of the urgent care appointments. And it's like -10 degrees out there. Who wants to go out and scrape the windshield of the car and wait for it to warm up, and put on 50 layers of clothing.

The whole thing with the cost of Xyrem is a scam. It used to be sold in health food stores as GHB. Now it's a street drug, roofies, that's easy to synthesize in a bathtub. Jazz, the company that sells it, didn't do any of the research to develop the drug and it costs them nothing to make it. It's just all the stupid regulations that make it cost so much. They've put an application into the FDA recently to have it approved to treat fibromyalgia. If that goes through, it will no longer be an "orphan drug" to treat a rare condition, but a widely used medication. And the cost will have to go down. Meanwhile...

I've thought about asking Dr. B about Mirtazepine, since it's known to help with sleep quality. But it may cause too much daytime sleepiness, which is crazy as it is. On the narcolepsy forums I've been frequenting, people talk a lot about Zoloft as being the one antidepressant that really helps.

I think I need to fly out to sunny LA to visit Dr. B and do the repeat nap study. And spend some time in the sun.

[ViewsAskew]

I wish I could find something helpful, hopeful, or just not hateful to say....I can't.

I second flying to California and spending some time in the sun.

[SquirmingSusan]

It's strep. I got in to the doctor this morning, got a throat culture, a brief exam, and the doc handed me a sample bottle of amoxicillin so I wouldn't have to go the drug store. Nice. Relief is on the way.

My dh drove me since I was sleepy and feeling sick. He's looking for a new doctor, and liked the guy who saw me this morning. I liked him too, but I've already found a doctor with the same group who I'm comfortable with. Gosh, I could start to think that there really ARE competent doctors in the world. It's a physician-owned clinic; maybe that's what makes the difference.

[Polar Bear]

You got an appointment with your own medical practice on a Sunday ?? Excellent.

We would have to go to the emergency locum GP cover based in one of the hospitals.

Glad to know you have your antibiotic which will kick in within a day or so.

[ViewsAskew]

Sorry about the strep, but glad you have the antibiotics and a good doctor's visit.

[doety]

Susan, that sounds absolutely miserable. We already know how unfair this mess is -- but on top of that, I do believe every time we get the flu or strep or experience bouts with arthritis, it makes the RLS so much worse. Really -- what crap!
I know the feeling of just walking around (altho walking is a little difficult for me right now) knowing that I'm a bright, capable person who could be doing useful work IF ONLY I could sleep at night and not be visited by these weird bouts where I jump around. I've been doing freelance writing and editing the last four years, but I can't even count on doing that. I keep cancelling business stuff...will they ever call me again?
Feels like we're out in their weird wilderness...
Of course: I hope you feel better soon.

[ViewsAskew]

Oh, just thought of something; you might have vertigo, Doety. Susan knows quite a bit about it. I've had it off and on for years. It all started one morning when waking up dizzy as can be. It was that you had this before that made me think of it. Is vertigo what you had before?

[doety]

Hi: I'm not sure what they called it. I had loaned a bed to a messy friend -- don't think she ever dusted. When I got it to my new home and moved it in, I sneezed for an hour, couldn't stop and it felt sort of explosive. When I got out of bed the next morning, I slammed into a wall and fell on the floor, then I threw up all day. A doc gave me Compazine or something like that, which put me to sleep. The vomiting stopped, but not the dizziness and I seem to remember it took weeks to really go away. My conclusion was that I termporarily damaged some inner ear thing. Is that vertigo? Now I don't know what to think about Neurontin -- the thought of trying it again makes me cringe. Right now, I"m barely getting any sleep and I would say the Methadone is not working.

[ViewsAskew]

Check you your thread again, Doety. Susan posted about vertigo. Yep, that's what it's called when you have the inner ear, dizzy, vomiting thing going on.