Tortured Newbie

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
KDJM
Posts: 2
Joined: Sat Apr 01, 2017 1:51 am

Tortured Newbie

Postby KDJM » Mon Oct 16, 2017 10:20 am

Hello Everyone,
I join this site several months ago. Can't remember if I posted anything and I'm having a difficult time navigating the discussion board, so if anyone replies, I hope I am notified or can find your responses. Anyway, I'm 63. The first experience with RLS was in 1977, probably long before RLS was well known. It was during a long car ride. Over the last 40 years I've had long remissions and short flair ups. During the past 5 years it has become increasingly tortuous. My ferritin level is in the 50s. With oral supplementation it rose to 75. My doctor is unconcerned and unimpressed with the level of my distress. When I tell him what I've read, I get the impression that he is just going a long with what I ask for - without any real interest. So, I currently have a medicine cabinet that includes Requip, Horizant, hydrocodone, ambien, xanax, Tramadol, and Sinemet. Since I'm on my own in treating the RLS, I'll tell you my experiences. One half to a whole Sinemet works wonders at the theater or on long flights. Half Requip and half ambien worked well for sleep for a few weeks until I started waking at 2 or 3 am. I starting taking a whole Requip and had a weird side effect. Just as I was falling asleep, I would have the sensation of losing my bladder or bowels (never both at the same time). This was so shocking and intense that I would fly out of the bed, holding myself to keep it from going on the floor, then check myself in the bathroom to find absolutely not one drop of anything!!!! I quit the Requip after several of these episodes ---- but just to check if it was the Requip, I tried it another night several weeks later and it happened again. Then I tried 300 mg of Horizant, even though I know 600 mg is the starting dose for RLS. I am so sensitive to medications so I try to go with the lowest possible dose. The 300 mg made my brain fuzzy, I was mildly nauseous, and I had a headache. I slept for 2 hours then was up massaging my legs. So, now I'm taking half hydrocodone and half ambien. This combination is not enough to keep me asleep all night, and for some reason I wake up with RLS symptoms. I have RLS all day long. It can start before I get out of bed. As long as I keep moving, I'm OK ---- but I do get RLS sometimes as early in the day at 1 pm when in the car, or out to lunch with friends. I've even had RLS at yoga during shavasana. I have an appointment at Mayo on November 1 with an RLS specialist, who listed on this website. I wish I didn't have to wait to see him. Every night is misery. Non prescription treatments have included massage and long, hot baths with Epsom salts. I also play video poker in bed which is so boring that it helps me fall asleep. I have found the webinars to be particularly informative and helpful. Thank you for reading.

Rustsmith
Moderator
Posts: 2630
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Tortured Newbie

Postby Rustsmith » Mon Oct 16, 2017 1:00 pm

KDJM, welcome to the discussion board. I wish that I could say that your experience is unusual, but most of us have somewhat similar stories, especially the part about your doctor. Hang in there, November 1 isn't that far away, especially if it is to see a specialist at one of the Quality Care Clinics. My experience was that it took several months to get an appointment, but in both cases it was ultimately worth the wait.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

KDJM
Posts: 2
Joined: Sat Apr 01, 2017 1:51 am

Re: Tortured Newbie

Postby KDJM » Mon Oct 16, 2017 2:11 pm

Thank you, Steve

ViewsAskew
Moderator
Posts: 14857
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Tortured Newbie

Postby ViewsAskew » Mon Oct 16, 2017 3:10 pm

Oh my, that bowel/bladder thing sounds horrifying! I definitely would never want to take that drug again.

Sadly, agree with Steve - your experience with your doctor is all too familiar. Still infuriates me every time someone has to go through this. Grrrrrr!
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.

badnights
Moderator
Posts: 4554
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Tortured Newbie

Postby badnights » Tue Oct 17, 2017 5:10 am

Hello KDJM!
what a
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 2 guests