And, now my turn

For everything and anything else not covered in the other WED/RLS sections.
Wayne
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Postby Wayne » Wed Dec 30, 2009 3:53 pm

re: Mouth guards

I had to wear something similar once when having some dental work done because the dentist thought I might be clenching my jaw.

Wore it for a week with no problem, then one night I was having a nightmare that I was gagging and woke up really gagging. The guard had come loose during the night and was rattling around my mouth and must've slipped to far back into my mouth and caused the gagging.

I came fully conscious in a microsecond, got out of bed heading to the bathroom, getting it out of my mouth at the same time. I didn't throw up, was close though. I didn't wear it again after that.

Guess I wasn't clenching my jaw, since it was able to come loose. Best to get a fitted one though so it stays snug and doesn't depend on you keeping your jaw clenched all night.

Horrible feeling to wake up like that.

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SquirmingSusan
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Postby SquirmingSusan » Wed Dec 30, 2009 7:53 pm

The mouth guards I'm talking about are fitted, but you fit them yourself at home. You throw them in boiling water for half a minute, then cold water for 2 seconds, then smoosh them up onto your teeth. I always have to cut them off in the back so they don't gag me. They do make you drool, though. I don't wonder anymore why football players are always spitting.

Now, back to the girl talk. :wink: Here's a couple of good sites.
http://www.barenecessities.com/ (Look at "Oprah's favorite with lace" - ain't it perty?)
http://www.jms.com/
Susan

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SquirmingSusan
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Postby SquirmingSusan » Wed Dec 30, 2009 8:06 pm

Polar Bear wrote:Take a pill for the legs, then take a pill for the nausea, or take a pill for the headache, and why doesn't the tramadol (pain relief) for rls help a headache?? Yes, I know its to do with different receptors etc. but isn't it all pretty complicated.


Ah, the age old question of why do opioids and the like cause headaches and not cure them... Or why does Tylenol help with headaches but not with menstrual cramps... And why does ibuprofen help with cramps, but not with headaches...

BTW Ann, I wear the mouth guard while I'm awake. I need to go fit mine so I can start taking my Nuvigil again, so I can stay awake to get some things done around here.

I'm getting crazy with cabin fever this winter. It just keeps snowing. It seems like there hasn't been a sunny day in a month or two.
Susan

ViewsAskew
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Postby ViewsAskew » Thu Dec 31, 2009 5:27 am

Betty/WV wrote: Does tramadol have acetaminaphine in it????? I'm going to check, and today try some Tylenol Artheritis Pain pills.

Also, I know what you mean about the bras. I need fitted for size also. I don't think I'm wearing the right size.

Take care, and I hope you find some relief, real soon. Y ou have really been having a bad time.

BETTY/WV


Hi Betty,

Nope on the acetaminophen in tramadol.

Do consider a fitting, but please do not go to a regular store. They use a completely different process and it doesn't work! They made the band bigger to accommodate a larger cup size.

And, thank you - I appreciate your care and concern. Truly. I am continually grateful for all the wonderful people here.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Postby ViewsAskew » Thu Dec 31, 2009 5:40 am

Polar Bear wrote:Hmmm.... I'm also one of those who has to have a fitting... relatively narrow back but b.i.g. front. Our UK sizings may be a bit different but I use a G/GG but only at 34" or 36". Means I'm paying around £40 per item.

Often wonder if a reduction in my younger years would have saved me from suffering now from nerve compression in cervical spine.

Back on topic with the drugs, it seems we have always either the nausea or the headache. Take a pill for the legs, then take a pill for the nausea, or take a pill for the headache, and why doesn't the tramadol (pain relief) for rls help a headache?? Yes, I know its to do with different receptors etc. but isn't it all pretty complicated.

Keep the keyboard, and keep whining...... then I don't feel so bad when I need to have a whine :)


My favorite bras are UK bras, Betty. I love the Fantasie and Elomi lines. I also like a couple French ones, but they are really pricey. I'm larger than you in the band, but am a G or GG, too. I was fitted as an FF, but it only works in that one bra! The others I've needed to go up a bit. I lost a bit of weight recently so we'll see how that affects things. You're going to laugh, but I often buy my bras on Ebay! They sell close-outs from stores, they are new, still with tags, but at about 1/3 to 1/2 of the stated price. I wouldn't do that for ones I hadn't tried, but for the styles I really like, it's the only way I can afford to have several of them. It's crazy to spend 40 UK or 80 US on one undergarment! And some cost even more. My best friend spent $130 US on one bra.

Susan, I like BareNecessities, too; I also like Her Room and the UK site FigLeaves.

Back to the drugs, I also get that different drugs work on different kinds of pain but it's so strange to take an opioid and then need to take an aspirin.
Ann - Take what you need, leave the rest



Managing Your RLS



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ViewsAskew
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Postby ViewsAskew » Thu Dec 31, 2009 5:44 am

Wayne wrote:re: Mouth guards

I had to wear something similar once when having some dental work done because the dentist thought I might be clenching my jaw.

Wore it for a week with no problem, then one night I was having a nightmare that I was gagging and woke up really gagging. The guard had come loose during the night and was rattling around my mouth and must've slipped to far back into my mouth and caused the gagging.

I came fully conscious in a microsecond, got out of bed heading to the bathroom, getting it out of my mouth at the same time. I didn't throw up, was close though. I didn't wear it again after that.

Guess I wasn't clenching my jaw, since it was able to come loose. Best to get a fitted one though so it stays snug and doesn't depend on you keeping your jaw clenched all night.

Horrible feeling to wake up like that.


That sounds awful, Wayne. I think my hubby uses a guard similar to what Susan suggested below - one that you sort of fit to your own mouth.

I think I'll have to do it. This is driving me nuts. I can't spend my days doing self-massage. I could ask hubby to, but how much work would we get done once he had me on the bed with my top off?????? Ah, the problems of working with your lover, lol.
:mrgreen:
Ann - Take what you need, leave the rest



Managing Your RLS



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doety
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guards

Postby doety » Thu Dec 31, 2009 3:19 pm

my husband has used one of the mail-order mouth guards for the last couple of days and it's worked wonderfully. He doesn't snore, he gets better sleep and for the short time I'm able to stay in bed, he doesn't interfere with my sleep.

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SquirmingSusan
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Postby SquirmingSusan » Thu Dec 31, 2009 7:39 pm

Doety, does your husband have one of those that's meant to prevent snoring? My local sleep doctor wants me fitted for one of those, but I've thought of ordering one online. Those are a whole different thing from the regular mouth guards that prevent teeth clenching. They're for apnea and upper airway resistance. They often work better than CPAP, so if you can't stand using your CPAP you may want to look into the mouth guards...
Susan

doety
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guard

Postby doety » Thu Dec 31, 2009 8:29 pm

Thanks, Susan. Yes, his is the kind to prevent snoring and help with sleep apnea. I also ordered one and if the CPAP starts bothering me, I may try it. My doctor was very concerned I wasn't using anything, but was using meds that depress my breathing. I think his concern made me really think about what I was doing.

ViewsAskew
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Postby ViewsAskew » Wed Feb 17, 2010 12:16 am

Thought I'd supply a short update (though short update in my writing style may be an oxymoron, lol).

The levorphanol works great on the RLS, but each week for two months I've suffered through brutal headaches. The mouth guard does nothing. I *think* that it makes me tense, particularly in the jaw and neck area. I've had trigger point issues for years but this medication takes them to a new (and horrible) level.

Each week, I have at least two days I cannot function. My head, neck and shoulders have at least 9-15 trigger points (locked, spasmed muscles) that take massage and heat to remove.

So, last week I wrote to Dr B and suggested we try the next medication. I also called my Primary Care doc and asked if she'd work with him. I can't tell you how much I appreciate that Dr B will send me scripts, but the FedEx fees are killing me. She agreed.

Yesterday I picked up a month's worth of Oxycodone. I'm still using tramadol with a teeny bit of Mirapex on the weekends to try and prevent dependency issues. I took the Oxycodone last night for the first time. It knocked out the daytime/evening RLS quite well. Unfortunately, it wasn't so effective for sleeping. I was in bed about 7 hours, but was awake at least 30 times, each time with RLS. I was able to fall back to sleep by contorting my body, but by the time I got out of bed my back was very unhappy from being bent into weird shapes all night.

I'm hoping today is better. If I remember correctly, I didn't have great results from the levorphanol for the first few days. I'd love for it to work well immediately, but that may not happen.

In terms of side effects, no headaches from this as of yet. Thankfully. I did notice that it suppressed my breathing more than the levorphanol; it's more like methadone in that regard. I've a cold and that made for some moments of being absolutely unable to breath when I'd roll over. I'm being vigilant for any signs of apnea. While the breathing is depressed, I don't appear to be stopping breathing, am not snoring, etc. I ask hubby to keep an eye out as we tend to sleep at different times from each other.

I continue to hate Mirapex, even for two days a week using only 1/4 of a .25 mg tablet. It does stop the RLS extremely well, however. If only it didn't have about 20 offending side effects!
Ann - Take what you need, leave the rest



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Polar Bear
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Postby Polar Bear » Wed Feb 17, 2010 3:29 am

[quote="ViewsAskew"] I was in bed about 7 hours, but was awake at least 30 times, each time with RLS. I was able to fall back to sleep by contorting my body, but by the time I got out of bed my back was very unhappy from being bent into weird shapes all night. [quote]

This means you were 'falling asleep' and waking up approximately every 15 minutes. Its hard to even consider that this was any sleep that was worthwhile.
Betty
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ViewsAskew
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Postby ViewsAskew » Wed Feb 17, 2010 5:57 am

And, unfortunately, I've had RLS the entire day. I dulled it with a tramadol early in the afternoon. I took a full dose of oxycodone at 5 PM and had mild RLS all evening; took the second full does an hour ago and am still jiggling my legs and winding my ankles. I can sit here and type but no way can I sleep.

Unless something happens soon, it looks as if this is not going to work. I've been taking it every 5-6 hours, but I think even if I moved it to every four I'd not have enough coverage.

crud.

I'm tempted to try the methadone again just to see what happens...the last time I tried that I had the same result as I'm having with the oxy. I can only hope it would be different.

I think Aiken was taking methadone about 4 hours prior to taking oxy....I suppose that's an option, too. Gosh knows my doctor will FREAK if she thinks I'm doing that....even Dr. B isn't much into combining opioids/opiates. Gotta love being a guinea pig.
:roll:
Ann - Take what you need, leave the rest



Managing Your RLS



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SquirmingSusan
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Postby SquirmingSusan » Wed Feb 17, 2010 7:22 am

Oh this just sucks, Ann! It just seeks like at some point the universe has to stop picking on you this way.

I suppose adding something like a muscle relaxant to the levorphanol could help, but those are CNS depressants as well, so that could be scary. Things start to get crazy when you need to take meds for side effects of another med... I'm a teeth clencher too and I've thought about Botox for that, but there must be an easier way.

You say your primary doctor will work with Dr. B? That's one positive out of all this madness. I had to schedule a FedEx pickup with Dr. B today, and just did 2 day instead of overnight. Once I get stabilized on these new meds, I'll switch to the 3 day, which is about $10 to get it from there to here. And actually, my new primary doctor doesn't get freaked out about controlled substances, so I may eventually get her to take over some of these prescriptions.

I don't know if this would work for you, but when I have a cold I use the 12 hour nose sprays. I alternate nostrils so that I don't develop too much rebound, and then taper off when the cold is gone. I just can't stand congestion in my head. I always have nose spray within reach. I figure I have enough problems without not being able to breath through my nose.

Well, you know what we tell people around here: Stick with it and eventually you'll get relief. Really!
Susan

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Postby Polar Bear » Wed Feb 17, 2010 8:29 am

I don't think I've ever been in the position where I've had no decent sleep and also had constant rls 24/7 the next day. Generally even if exhausted from no sleep, I manage to get some coverage over the symptoms, once I am out of bed.

I feel for you - and hope you are at this moment - defying the odds and are asleep.
Betty
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Aiken
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Postby Aiken » Wed Feb 17, 2010 10:52 am

Ann--

I don't remember if this is your first oxycodone attempt, so forgive me if I'm preaching to the choir here. Anyway, here are my two cents:

One of the reasons I like oxycodone is that it has a pretty short half-life, so I can easily control how long I have it on board.

Unfortunately, one of the reasons I hate oxycodone is that it has a pretty short half-life, so sometimes it's not on board long enough. If I want to sleep on it for more than a couple of hours, I need some already on board from a previous dose, and then another dose right before bed. Alas, sometimes that just gets me speedy and not sleepy, but I usually luck out and get dozey. I think I basically need to try to nod off while A) I'm at least somewhat tired, and B) the blood concentration is peaking.

Functionally, it's definitely as much of a polar opposite of methadone as I've found, at least within the opioid spectrum. You have to take a really different approach with it. Methadone's half-life is, what, 24 to 100 hours? Oxycodone seems to be more like 2.5 to 3.5. I was surprised when I switched from hydrocodone to oxycodone that, even though oxycodone is about 33% stronger by weight, I needed 5mg more of it per evening because it just didn't last long enough. I'd wake up a few hours after bedtime with my legs, pelvis, and shoulder going bananas, where the hydrocodone had been carrying me through the night.

My wife also takes oxycodone, for chronic pain, and when I told her about my experience, she basically told me, "Yeah, that's what it's like. It doesn't last very long." That's probably why it's so prone to causing addiction, if I understand the correlation between half-lives and chasing behaviors correctly.

Maybe you need oxycontin instead? If I remember right, your symptoms are present for most of the day. Maybe the right set of overlapping extended-release doses would be better than trying to time everything right all the time. That, or maybe something like a fentanyl patch. Didn't someone try that a year or two ago? I forget what the results were. I know fentanyl sure does the trick when I get it for an endoscopy or suchlike, and seems to last longer than oxycodone even without an extended-release mechanism.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.


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