Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 On Behalf Of lizac1965 I think I have Restless Leg Syndrome. Does anyone else have it? What meds work best for it? What are the main symptoms? How is it diagnosed? Kathleen's response: Several years ago I couldn't lay still while asleep or awake. My pcp put me on Baclofen which a muscle relaxant. That helped tremendously. It made my mouth dry but that seemed to be my only side effect. Oh, in the beginning it made me slightly tired, which was a nice thing, I needed the sleep. Kathleen Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome, surgery for everything but EDS since 1998. http://chiariconnectioninternational.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 I have reatless legs syndrone. I take requip. It bothers me mostly at night. I cant have caffiene after lunch or it will bother me at night. I take the med about 30 minutes before bed or I cant stay in the bed. NCC-RLS I think I have Restless Leg Syndrome. Does anyone else have it? What meds work best for it? What are the main symptoms? How is it diagnosed? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Hello--- I also take baclofen and it does help with RLS. I didn't get any relief at first and I guess it had to get into my system. It also helps with my lower back pain, and is very inexpensive, a drug that is on the generic list at Walmart for $4.00 for a months supply.. Later ...Jerry in Carolina .. RE: NCC-RLS On Behalf Of lizac1965 I think I have Restless Leg Syndrome. Does anyone else have it? What meds work best for it? What are the main symptoms? How is it diagnosed? Kathleen's response: Several years ago I couldn't lay still while asleep or awake. My pcp put me on Baclofen which a muscle relaxant. That helped tremendously. It made my mouth dry but that seemed to be my only side effect. Oh, in the beginning it made me slightly tired, which was a nice thing, I needed the sleep. Kathleen Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome, surgery for everything but EDS since 1998. http://chiariconnectioninternational.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Hello All, It's been a while since I replied to the group. Here is my opinion. I believe there is a connection to RLS and tethered cord. Of course not in all cases, but if you have Chiari and TC I think many of us get RLS. As my Chiari symptoms progressed and signs of lower issues developed I started experiencing Restless Leg Syndrome. It actually worsened after TC surgery. Seeing I hate taking meds......a light leg stretch before I hop into bed helps a bit. Don't forget the warm milk too; Puts you to sleep faster. Guy Chicago Cervical C3-C6 07/2007 TCS Surg 10/2007 TCI PFD Surg 06/2008 TCI > > I think I have Restless Leg Syndrome. Does anyone else have it? What > meds work best for it? What are the main symptoms? How is it diagnosed? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 I have had restless leg syndrome come and go...it got better for a while after the surgeries but returned. I could not take requip due to low iron...make sure you get iron checked before it and during taking it...many of us with EDS are not absorbing iron, vitamin D etc... Also requip is known to cause obsessive compulsive issues...like being unable to stop gambling, shopping etc... I have had success staying on flexeril and neurotonin. You do have to watch both of these drugs for depression...oh the side effects of everything! Kathy trifecta - all surgeries multiple other conditions **************Get the Moviefone Toolbar. Showtimes, theaters, movie news & more!(http://pr.atwola.com/promoclk/100000075x1212774565x1200812037/aol?redir=ht\ t p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 I take nortriptoline (SP?) and that has helped my restless leg. It seems to be worse at night, like my legs have to keep dancing ! Maureen and her Beagle Madison Lulu and cat Brooklyn in Northridge, Ca. with Napoleon.) and Penelope and cat Figaro watching over us from the Rainbow Bridge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Interesting thread on restless leg. I bounce my legs a lot and move my feet when I sleep. When they started advertising about RLS my doc and I wondered if I had it. Though I move my legs and feet a lot, I did not fit some of the description, I especially don't have the " creepy crawly, have to get out of bed " feeling which many RLS people have. When I force myself to not move my feet or legs, my back hurts, its like a cramp going up my spine. Also, for me, the movement is soothing, not creepy. So, we decided it is not RLS, but back to the highly clinical diagnosis of " fidgety. " Hanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 In your sleep this is Nocturnal myoclonus. The same drugs for rls is working for me for this. The sleep disorder doctor said this was awakening my brain so many times an hour that there was no way I was getting restful sleep...I cannot remember the number but I was in shock...and in shock that I did this in my sleep... It again has something to do with our brainstem. So much fun I forgot to laugh! Kathy trifecta- all surgeries multiple conditions > > Interesting thread on restless leg. > > I bounce my legs a lot and move my feet when I sleep. When they started advertising about RLS my doc and I wondered if I had it. Though I move my legs and feet a lot, I did not fit some of the description, I especially don't have the " creepy crawly, have to get out of bed " feeling which many RLS people have. > > When I force myself to not move my feet or legs, my back hurts, its like a cramp going up my spine. Also, for me, the movement is soothing, not creepy. So, we decided it is not RLS, but back to the highly clinical diagnosis of " fidgety. " > > Hanna > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Wanted to add you can be low in calcium and iron so check these also...these can cause rls and myoclonus.. With my EDS I am not processing Calcium, magnesium, Vitamin D, and Iron especially so having to take massive doses...this MAY affect some of the others of you. Magnesium supplement ordered by my cardiologist also helped my chiari related heart and bp issues. Also again a reminder Requip will deplete your iron even more. It is not something a doctor will check on a regular cbc...they need to order separately...make sure you get checked. Ok...my 5 cents (inflation) Off soap box this morning Kathy trifecta -all surgeries multiple other conditions > > > > Interesting thread on restless leg. > > > > I bounce my legs a lot and move my feet when I sleep. When they > started advertising about RLS my doc and I wondered if I had > it. Though I move my legs and feet a lot, I did not fit some of the > description, I especially don't have the " creepy crawly, have to get > out of bed " feeling which many RLS people have. > > > > When I force myself to not move my feet or legs, my back hurts, its > like a cramp going up my spine. Also, for me, the movement is > soothing, not creepy. So, we decided it is not RLS, but back to the > highly clinical diagnosis of " fidgety. " > > > > Hanna > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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