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by SquirmingSusan
Tue Jun 21, 2011 4:26 am
Forum: General Topics: RLS/WED
Topic: WED/RLS symptoms while asleep
Replies: 22
Views: 2666

I don't get it in my sleep as much anymore, since starting Xyrem. But sometimes I do dream about having to move my legs, and trying to move them to get rid of the RLS sensations wakes me up. So yes, I agree that we can have it anytime.
by SquirmingSusan
Tue Jun 21, 2011 4:09 am
Forum: Physical Treatments
Topic: stockings
Replies: 51
Views: 11618

So sorry to hear of your loss, Brenda. Sometimes life can just hurt so much. I do believe that loved ones who have passed on are never far away, though. It's just hard when you can't reach out and touch them.
by SquirmingSusan
Tue Jun 14, 2011 5:01 am
Forum: Everything Else...just no RLS/WED!
Topic: sleep issues
Replies: 171
Views: 35356

I do take melatonin just about every night, along with my Xyrem (GHB). You'd think that the Xyrem would be enough to knock me out and make me sleep, but I find that I wake up after only 2 hours a lot of the time. With the melatonin, I get a bit more sleepy and usually get 2.5-3 hours per Xyrem dose....
by SquirmingSusan
Thu Jun 09, 2011 2:21 am
Forum: Everything Else...just no RLS/WED!
Topic: #4 Sleep Study
Replies: 8
Views: 1877

Betty, if Mirapex gives you insomnia, how are you sleeping at night? You said that you only sleep 2-3 hours at a time. How much total sleep do you get? To me it seems like if you already are on CPAP, and you're RLS is being effectively treated with Mirapex, that the next thing your doctor might cons...
by SquirmingSusan
Tue Jun 07, 2011 6:52 am
Forum: General Topics: RLS/WED
Topic: RLS while sitting but not when asleep?
Replies: 33
Views: 4112

John, I can weigh in on the Valium question. I took it for about 10 years for chronic vertigo from inner ear damage. It literally made my life bearable, because who can go through life with constant, spinning vertigo. At first I took 5mg, 3 times a day. I never increased my dose, and after a few yea...
by SquirmingSusan
Tue Jun 07, 2011 6:32 am
Forum: Prescription Medications
Topic: re: /Gabapentin
Replies: 18
Views: 4893

I have had some success with gabapentin as far as calming my RLS. I recently have been taking it again because I take Xyrem at night for narcolepsy and get wicked rebound RLS in the morning, along with some crazy anxiety for a bit. I had some gabapentin around and decided to try one in the morning a...
by SquirmingSusan
Tue Jun 07, 2011 6:24 am
Forum: Prescription Medications
Topic: Trazodone?
Replies: 10
Views: 1229

Trazodone is a mild antidepressant that has some sedative properties. It works for some people to help them sleep, without a lot of side effects that come with other sedatives. I tried it and it did nothing, but others have said that it has helped them. It's usually RLS-friendly, so it might be wort...
by SquirmingSusan
Tue May 31, 2011 4:09 am
Forum: Everything Else...just no RLS/WED!
Topic: Welcome New Moderator
Replies: 9
Views: 1916

Awesome, Beth. I did the vast majority of registrations for many months and I got to the point where I could do it in my sleep. Now when I do it I have to think about it, which is dangerous, because my brain doesn't always work properly. So wonderful that you are willing to do that forever! You'll b...
by SquirmingSusan
Fri May 20, 2011 3:43 am
Forum: Prescription Medications
Topic: Any new medications
Replies: 2
Views: 813

Hello and welcome to the discussion board. PolarBear has directed you to the Mayo Clinic Algorithm, which will give you some great information about other options to treat RLS. There are actually many options and most people arrive at an effective treatment sooner or later. Hang in there!
by SquirmingSusan
Fri May 20, 2011 3:41 am
Forum: Prescription Medications
Topic: erratic effect of narcotic medication
Replies: 5
Views: 1230

No idea, Beth. Sometimes there are weird interactions between foods and medications. Grapefruit juice is the one that comes to mind as something that can radically affect the metabolism of many medications, but there are others. Did you eat anything that you don't normally eat? Take cough syrup with...
by SquirmingSusan
Wed Apr 27, 2011 7:21 pm
Forum: Prescription Medications
Topic: Savella
Replies: 12
Views: 1619

Savella is an SNRI, like Effexor and Celebrex, but it has a much stronger effect on norepinephrine than the others. It's the effect on norepinephrine that helps with pain, and it also helps with energy. It may or may not affect your RLS and you won't know until you try it.

Good luck with it!
by SquirmingSusan
Mon Apr 18, 2011 9:16 pm
Forum: Everything Else...just no RLS/WED!
Topic: hearing diffs :) :)
Replies: 4
Views: 1442

Yes, they did mention the Giant's Causeway. That is so cool. Dr. B has a picture on the wall of one of the exam rooms of a similar thing in California called "The Devil's Postpile."
by SquirmingSusan
Mon Apr 18, 2011 9:09 pm
Forum: Everything Else...just no RLS/WED!
Topic: Dental problems continue...
Replies: 11
Views: 2108

You're welcome, Beth. Always happy to share information. One thing I forgot to mention about the xylitol candies and disks - if you use them, keep them away from dogs. Xylitol is highly toxic to dogs and a couple grams can kill a large dog. I'm very careful to not leave any of it sitting around wher...
by SquirmingSusan
Fri Apr 15, 2011 9:42 pm
Forum: Everything Else...just no RLS/WED!
Topic: hearing diffs :) :)
Replies: 4
Views: 1442

hahaha! Too funny. I can see how you could hear that wrong, and be confused as to why you're supposed to bring baby Jesus on vacation.

BTW, my dh and I watched a Rick Steves Europe show the other night about N. Ireland. It was so interesting - and such a beautiful country!
by SquirmingSusan
Fri Apr 15, 2011 9:32 pm
Forum: Everything Else...just no RLS/WED!
Topic: Dental problems continue...
Replies: 11
Views: 2108

I can relate to the whole rotting teeth thing. I've had 5 or so root canals in the last year, and still need one more. And I have decay along the gum line from clenching my teeth. We've discussed this at length in various narcolepsy forums because it's very common for us to have major problems with ...

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