I’m starting a thread with nothing to rant about - wow

[badnights]

I finally got to have my sleep study and MSLT last week. The sleep specialist is the guy I saw last August after waiting over two years. He kindly tacked on an immediate follow-up after I faxed him a plea to please help me with the worsening RLS, so I saw him the morning after the MSLT. He had them score my sleep study the day after the test, while I was having the MSLT, and they prepared the MSLT results as the tests were going on so that he got the last of them that night, and he had it all reviewed by 9AM the third day when I saw him! What a change from the place in Calgary that made me wait 5 months and then didn’t even give me any useful advice!

A funny thing is that this guy came into sleep studies from a psychiatry background, and still works at a university hospital, so he gives hour-long appointments. An hour long‼! I’m so used to rushing through things that I didn’t pause to describe anything, even when he asked, and when it seemed we had covered the basics (what my prescriptions would be, how I would contact him if I was desperate, and would I ever be normal again) I gathered my things and stood to leave. He saw me out and didn’t try to keep me, so I imagine he put the extra half-hour to use doing other work (or typing up the letter to my GP), especially because he must have had to alter his schedule to give me that time slot in the first place, after my fax of desperation to him.

I wasn’t sure what to think of him in August during my introductory appointment. He seemed controlled and unemotional, but very knowledgeable. I had a good feeling that way, that he knew about RLS. This time, wow, he was warm and concerned and caring, another of god’s angels. He talked to me like a - like, well, he discussed an article in the October issue of Sleep Medicine, he talked about various researchers and their work, and - not like I was a colleague, but like I was knowledgeable. That, and his obvious concern and warmth, left me feeling - gee, I don’t have words. Secure, that’s it, secure and validated!

So he’s adding Lyrica, which is the big change, and adding a permanent nightly dose of Imovane/zopiclone, the other big change, plus he’s giving official permission to raise my hydromorph contin to 15 mg (from 12 mg) upon occasion if I need it. That will also help me build up my stash again, since I depleted it so much getting through the last 3 months.

I slept in all 5 naps with a mean sleep latency of 9.2 (I think he said), which is very sleepy but not sleepy enough for narcolepsy and easily explained by my fragmented sleep the night before. Sleep efficiency was 67%, I forget how many times he said I woke up, I think it was 40-some per hour? Anyway I wish I had described to him more that the RLS was singing in me during most of the naps, that it was in me all night, that I squashed my legs to dull it, … He observed that most people with RLS kick a lot, and I didn’t, I thrashed my whole body when I moved. I explained that if I let myself start kicking, the RLS would overcome me and I would have to get up. I seem to have learned that I can tense my muscles to keep it at bay. If I had been at home, I told him, I would have gotten up, but I didn’t want to call the tech in so many times to unhook me, so I used every trick I knew to stay in bed longer. Has anyone else been told they move the whole body? I know I used to kick a lot, but sometime in the past year that changed, and I started tensing and changing position to squash various muscles to shut them up instead of kicking … I though ‘oh no, do I have some other disorder?’ but he said, no doubt you have RLS, it’s just different, maybe something like PTS from being inadequately treated for so long. But I don’t think so, because I don’t tense up in anticipation of the evil sensations, I tense up in response to them.

I am still all happy from the visit and gobbling my last few precious zopiclone nightly, but the fact is nothing has really changed yet, because I still haven’t heard from my GP who will be the one writing the new prescriptions! She’s really good, so I assume she’s sick or out of town, otherwise I would have heard from her by now.

Love to all
I feel good today

[SquirmingSusan]

Beth, that is all just so awesome! I'm so glad you finally found someone who is competent and caring and will actually treat you and help you feel better.

[Polar Bear]

Betty, you sound so 'up', I am very happy for you. You sound like a person with hope and optimism.

[ViewsAskew]

I found myself smiling and breathing a sigh of relief at the end of your post.

Wonderful. Truly wonderful.

[dogeyed]

Beth,
Glad things went so well with the sleep doc. It's about time somebody paid attention to you. Those whole body jerks, I used to get those when my RLS was not being treated well, got them while I was awake even! Compression stockings (knee-high support hose) do the same sort of thing as tensing up your legs to fall alseep, but I'm sure I've already mentioned that before. I take Lyrica, and combined with my other meds, I sleep better, also helps aches and pains. And REALLY glad you got that real pain medicine as-needed, that's fantastic.
GG

[Neco]

PTS = Post Traumatic Stress?


If so then it tensing up in response to the symptoms would make sense. If you were tensing up in anticipation that would likely be more of a general anxiety issue.

PTS events have specific psychological triggers that set them off, that's is why war veterans often do silly things like duck and cover under cars in the street when they hear one backfire, etc. Because it puts them back into that state of mind.

[badnights]

thanks everyone! still waiting to hear from my GP for the actual prescriptions but I'm sure they'll come.

Zach, yes, post-traumatic stress. You know more about it than I do. Maybe he was right, and I tense up because of something similar to PTS. But I tend to think it's for practical reasons, because tightening the muscles dulls the RLS sensations for a while. But I'm not totally sure; I probably do tense up more than is useful, out of some kind of bad habit.

[Scarlett46]

I would say that I tend to handle my RLS in a similar way... I consider tensing my muscles almost equivalent to "moving" in regards to RLS. Especially when I'm in a place or situation (like a business meeting) where I simply am not able to get up and move. So I "wiggle" and tense just ever so slightly...

Actually, I am currently a week post-op from hip surgery, and have to sleep with a CPM (continuous passive movement) machine. You might think that by the name, it might help the RLS, but I feel so confined in the thing, and it does move very slowly. I had a bad RLS night the other night, and the only thing I could do was tense up and wiggle the non-operated leg, and the toes on the operated side (my quads are currently unuseable). It wasn't enough, so I found myself throwing my hands in the air and wiggling my fingers... like I was trying to trick my mind into drawing the feelings and need for movement up and out of my legs through my arms...

[badnights]

oh scarlett that's horrible. I take it the machine is a pain to get in and out of? When will your quads start working again?

I'm glad to know someone else tenses up to deal with the RLS. I find if it's not too strong, tensing is as good as moving, pretty much; as long as the muscles are working it doesn't matter if they're going anywhere.

I've used your moving-other-parts tricks in airplanes and other places where I couldn't stand up, but it never works for long, I guess only as long as the distraction does.

[ViewsAskew]

I also do the tensing thing. At my desk, I tighten my feet, then my calves, then quads and glutes. I go completely rigid in bed. I often stretch so that my muscles are taut or put them in positions so they are taut. It seems that when engaged, even if not being moved, the RLS is minimized.

Never really thought of that as a strategy until you wrote about it, Beth. I have several things I do almost unconsciously that are pre-getting up and walking.

[badnights]

I suspected you did this too Ann, from things you've said before. The hurdlers stretch.

[kickyknees]

...another "tenser" here

Happy for you for the validation.

[badnights]

My GP who was so "good" has fired me. She condescended to give me 30 days of zopiclone while telling me to find another doctor. She would not prescribe a new drug, so I have to find a new doctor before I can try adding Lyrica to my hydromorphone. Meantime my RLS breaks through the hydromorphone every night and I deal with that by adding Sinemet. (A doctor I saw for asthma offered it to me and I took it!!! because someone somehow cancelled my pramipexole refills, maybe they were too old? and pramipexole, much as I hate the zombie effect, has been a life-saver twice.) At least she gave me the zopiclone, so I can sleep when the RLS isn't there, which is a vast improvement over the past few months. Years.

Because I (still) need to vent about it, this is what she did. (And what I did. I am at fault here too, because I have such poor restraint when I'm tired and frustrated.) The sleep specialist sent his letter as advertised, and she got it Dec 4 or earlier. Her office called me that day and told me she needed to see me for followup but it wasn't urgent and her earliest available spot was Dec 16. I said "wow, what if I think it's urgent?" but they said, "she said it wasn't so the earliest we can give you is Dec 16". Fine, that's ok, I don't really know what kind of patients she has to deal with, maybe my chronic lack of sleep, the fact that I've basically lost my job (I'm still getting paid but I'm not allowed to do anything important anymore), my almost-total lack of life quality is not important next to people who are perhaps dying, how do I know.

But I called back and asked for a refill of the zopiclone, a drug she was very reluctant to prescribe but had given me a 14-days script for about 2 months ago; this is one of the drugs the sleep specialist was recommending I take regularly, so I thought it would be a no-brainer. But her office called back and said no, she needed to see me first. Why??? Turns out she wanted to tell me in person that she didn't want to treat me anymore, because the specialist said in his letter that I might eventually have to take methadone, and she wasn't even licensed to prescribe it, and (my take), she's never been comfortbale with RLS anyway (when I tried to tell her what it was like, so that she would realize how important it was for me to see a specialist, she told me not to bother because I would just have to say it all over again for the specialist! ...which specialist she only got me in to see after I finally wrote her a letter telling her what it was like!).

But I made it easy for her to ditch me, because I did the unthinkable and used the F word; when her office called me to refuse the zopiclone, I said "Tell her thanks a f.ing lot" (WHY would she refuse the zopiclone? The specialist was recommending I take it regularly, I'd had it before, it was a simple refill! Two weeks of my life was meaningless to her!) I was exhausted from so many sleepless nights. I didn't intend to speak so offensively and I apologized in the same hearbeat, profusely and sincerely, but the damage was done. I had provided her a fine reason to ditch me without any blame attaching to her. Funny though, she gave me 30 days of zopiclone. Why couldn't she have done that 2 weeks earlier? In fact, why couldn't she have done the whole thing over the phone? Then I would be that much closer to a new doctor and perhaps some relief from the nightly walking.

I can't see anyone for the Lyrica until Dec 24 at 4:15 PM, after which the drugstore may not even be open to fill a prescription. And I can't get a new-patient appointment (with a different doc - one who prescribes methadone) until Jan 18 (by which time my hydromorphone & zopiclone will have run out, so I sure hope the guy on the 24th will refill those). I don't even know this doctor who's taking new patients and who prescribes methadone, so I don't even know if I want to be her patient. I don't want someone who turns out the same as the last one, making me wait for an appointment whose only purpose is to ditch me, and leaving me in need of medication with nowhere to get it. Merry Christmas.

[Polar Bear]

Beth, I am so sorry this has happened to you. Its an awful position to be in, short on meds, and not knowing if next doc is even what you want. I hope the new doc turns out to be a blessing in disguise and that previous doc has actually done you a favour.

Hmmm... yeah, you kind of did give her the excuse to fire you.... and at the same time I reckon you were pretty restrained !!

[ViewsAskew]

Oh, Beth, that's just awful. I just hate logging in here to read stories like this. I hate it, hate it hate it. It just shouldn't EVER happen.

She basically did what my last doc did. It was so bizarre.

I honestly do not get some of these doctors. I wish I could hear their side of the story through a neutral third party, as I know I couldn't sit and listen without interjecting. I just wish I understood what their "real" issue is.