Restless Legs Syndrome (RLS) Discussion Board

I didn't have access to information regarding the drug. They would only tell me it was for mood. I'm glad it's over. It wasn't a drug that my patients were taking.
I'm not taking Gabapentin tonight. I have taken Kratom and one Oxycodone 5 mg. Will see how that goes.

Deb, if ever there was a case of collective medical malpractice, this is it. From what you have told us, it does not sound like any one doctor has done anything wrong other than pass the buck. However, the combined lack of care has allowed you to fall through the cracks. Then, when their combined lack of support resulted in extreme sleep deprivation, you get diagnosed with a "psychiatric" problem because they collectively failed you. So you end up in a psychiatric hospital where they have no idea how to treat the underlying problem, which is the insomnia from the RLS. So the "treat" the obvious psych issue with a med that actually makes your RLS insomnia worse. Talk about wrong-headed! You would have been far better off if they had sent you to an anesthesiologist. At least they understand how to control pain and could have knocked you out so that you could have gotten some rest.

So, at this point it looks like you are going to need to travel a bit further to find a doctor who can provide the level of care that you need. Most of these suggestions are probably things that you have looked into in the past, but since I know from experience how you cannot always think creatively when sleep deprived, I want to point them out for you to consider. I understand that Denver is too far away, but the level of help that you need is available there if you end up ruling out all other options. Do you know anything about the neurologists in Casper that claim to treat movement disorders such as Parkinson's? Is there a neurologist that is reasonably close who treats Parkinson's? I ask about Parkinson's since a doctor used to seeing those patients would be a step above what it sounds like you have now. How about movement disorder physicians or sleep neurologists (assuming your sleep doctor is not a neurologist)? I also saw that there is a Parkinson's support group in Laramie, perhaps they could give you some advice on where to find a doctor. If Denver is too far, have you considered trying to find an appropriate doctor in Rapid City or Scottsbluff if they are closer?

Once again, I am sure that you have considered all of these options in the past, but it sounds like it is time to re-evaluate your options and thinking "outside the box" is something that you probably are not up to right now.

Good luck, and if there is anything I can do to help, please ask.

I knew going to the ER on Friday, that they probably wouldn't be able to help. I agreed to the psych hospital mainly because I was so exhausted. It was more of an insurance thing. I saw my primary doc this morning, since the hospital made the follow up appointment. She has agreed to write for oxycodone until I find someone who understands and will help with the correct drugs. My primary understands, she is just afraid. But I think I am making headway with her.
I think Denver is my best bet. We could drive down through Kremlikng, Silver Thorne and into Denver.
Last night I only took the oxycodone 5 mg and nothing else, except for some Kratom. Legs were quiet all evening and night until 4:30 am. Took more Kratom then and was able to go back to sleep. So I got 9 hours. Wasn't able to wear mask, so in reality it was about half that. I am feeling a little more hopeful.

I understand that you agreed - but they didn't even bother to do some BASIC research to find that a dopamine antagonist is something you should NEVER give to an RLS patient, especially one who hasn't slept in weeks! That is malpractice, to me. I doubt I'd have the energy to fight it - and I am not trying to suggest you should...but if you do have the energy, it would be appropriate.

I appreciate your advice, but I'm not the type to do that kind of thing. I feel pretty good today. I'm just glad to be home.

Wow. Hard to believe how drugged up you've been. I hesitate to suggest anything else, but since you've been having a little success with kratom, you might try some agmatine sulfate. I tried it because a number of posters on reddit ( I know; not a great place to get medical advice, but what the hell ) said that it helped a person from developing too much of a tolerance with kratom. And then I noticed that I was quite sleepy in the morning. I researched the agamatine sulfate since it was the only new thing I was taking, and found a number of people who said it made them sleepy. So I started just taking it at night, and found that I fell asleep very easily and had much less morning sleepiness--although still a little. I need to keep busy and then I'm okay. So now I take about a half a tsp. agmatine sulfate before my nightime dose of kratom, and my legs are calm and I sleep pretty well, although I do have to get up two or three times in the night to take a little more kratom. I might also mention that my husband was having a very hard time falling asleep until I suggested he take a little agmatinee sulfate and it did the trick. And the really good thing is I don't have any of that hung over feeling I get from sleeping medication. Good luck to you.

Mary

debbluebird wrote:I appreciate your advice, but I'm not the type to do that kind of thing. I feel pretty good today. I'm just glad to be home.

I hear you. I am not, either, though in retrospect, I almost wish I were and had. Not for me, but for the people who also will come after me and get the same crappy treatment. I wish there were another mechanism that was binding making them change, but wasn't about money and the courts.

I've had two nights of sleep with Oxycodone 5 mg at bedtime. Feels good. It feels like I'm starting to function again. Don't know what is in store for me, but I'm going to enjoy the moment.

Great news!

For now, this seems to be working, one Oxycodone 5 mg and Kratom 2 to 3 doses. It's not perfect, but it's better than it was. I'm supposed to get the bipap machine this week. Then I just have to wait to see that doctor August 2. I'm sure they aren't going to like it.
Even when you try to describe what it is like to live with this disease, no one understands unless they have it.

No, they don't understand at all. And, while I don't think anyone wants to take something that compromises another part of treatment, sometimes that is what you have to do. For you, not sleeping at all is MUCH worse in my book!

Hope the bipap helps. It really has helped my husband - as well as a new mask. He doesn't need the chin strap anymore!

ViewsAskew wrote:Hope the bipap helps. It really has helped my husband - as well as a new mask. He doesn't need the chin strap anymore!

I don't have to use the chin strap anymore either.

Deb, sure hope things begin to turn around as you manage to get some sleep. I hesitate to add anything to your plate but feel it is important to reinforce that while using a regular bi-pap may make treatment of your obstructive sleep apnea more tolerable, it will not necessarily treat any central sleep apnea unless it's a specialized machine for central sleep apnea. You can get access to machine data, but since you're already in such a depleted state of being, maybe they can hook your machine to a modem that reads your data at the DME provider's office and report to your doctor. Tell them you are not up for a "wait and see" approach. You need to know on a daily basis if this is working or if they need to do something different. Now true, it does take some time to adjust, but if your data shows lots of centrals, they need to be analyzing the specifics and wave forms and discussing how long the current game plan should continue. Good luck with all this. There's some people astute in data interpretation over on cpaptalk, if you have trouble getting your docs to be responsive. Best wishes.

I have an appointment August 2. The data will be looked at then. We can't have a modem where we live. It's only a short time. I was having 10 centrals an hour with the cpap. This pressure is much higher. 23 and 19. I understand your concerns and appreciate what you say. My bigger concern is they won't allow me to continue with Oxycodone. We were in the car a good portion of today. My legs didn't like it. If they only allow one Oxycodone per night, my car rides are over. Right now I have some extras, but not for long.

My energy level is so low. It may take a long time to get better. I'm not getting anything done. I don't like when I'm not productive. I know I've said this before.