Introducing myself

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.
badnights
Moderator
Posts: 4841
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Introducing myself

Postby badnights » Wed May 30, 2018 4:44 am

Jim, I agree that your taper is probably too long and that gabapentin won't cover your symptoms.

See if you can afford Horizant (gabapentin encarbil) instead of gabapentin. Horizant is absorbed less erratically than gabapentin and therefore has a more consistent effect. =Whichever one you use, I suggest you don't ramp it up very high until you've been off the pramipexole for a while. Gabapentin can have some bad side effects (weight gain/change in eating habit, severe mood swings). I found with gabapentin that my urge to move was still there, although the abnormal sensations were helped by it. Even at 2100 mg a day combined with a hefty dose of codeine, it was not enough.

So I suggest you get a supply of kratom to help you thru the withdrawal, if your doctor won't consider opioids. You can search the board for lots of suggestions on how to buy and use it, but I have included a summary of what the main points of agreement seem to be concerning strains to buy and where to buy it from. As for how to use it, please search.

Good for pain, WED, sleep:
Red vein Borneo
the red strains
Horned Red (potent sedation)
+- Thai red vein (one person).

Alerting:
Thai red vein

Good for daytime – relieves WED and is stimulating:
Maeng Da
the green strains
the white strains
Yellow Borneo

Places to buy kratom, tested & verified good by board users:
So Cal: https://www.socalherbalremedies.com (search for speciosa, a tea)
Velvet Soul Naturals: https://www.velvetsoulnaturals.com/ (search for Mitragyna. Always finely ground and fresh)
Kat's Botanicals: https://katsbotanicals.com/
Valkyrie Botanicals: https://www.valkyriebotanicals.com/
Tea Time Botanicals: https://www.teatimebotanical.com/
Mystical Island: http://www.mysticislandkratoms.com/ (no one on the board has tried it but a number of people have heard on Reddit that it’s good)
For pouch discs to put it in, http://a.co/dJpaBJV
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

badnights
Moderator
Posts: 4841
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Introducing myself

Postby badnights » Wed May 30, 2018 4:55 am

Hi Everyone
My name is Kathryn - I'm a 63 yr old female that has had RLS since I was 18 yrs old. They were lways manageable with many nights up running around dining room tables, but I was able to maintain a normal life until I turned 45. I Went to my internist and she RX Carbidopa/levadopa 25mg/100mg. which worked for many yrs until I augmented. I then went to a sleep specialist and was given pramiprexole 0.25mg. It worked for few yrs then I found myself doing more and adding the Carbidopa /levadopa to the regime until I discovered something that has changed my life with RLS! I found water to work for me. If I keep drinking water until the sensations disappear ( usually drink about 3-4 8oz glasses) the RLS stops, It works every time even on an airplane. BUT I still have to take 0.25 of pramiprexole and 1/2 of the Carbidopa/levadopa at 7 pm, this gives me total relief and no augmentation, plus I sleep thru the night. I would like to get off the pramiprexole and am learning from your posts. Thank you!
PS my symptoms are creepy crawly sensations in my legs that are somewhat relieved with standing/walking. My symptoms were always worse when I traveled which I now realize was because I drank far less water when traveling.
Hi. Kathryn. Wow! I think I've heard someone talk about the water thing before. I have certainly heard it mentioned that dehydration may exacerbate the symptoms. Very interesting.

I am concerned that you're still on pramipexole and taking levo-carbidopa after so many years. I find I get horrible rebound from the LC - almost exactly 4 hr after I take it, I have wicked symptoms. So I only use it when I have to get up anyway in less than 4 hours! But mainly, it is so easy to augment on that I never take it more than 2 or 3 times a week.

You are at the maximum recommended dose for pramipexole, which is 0.25 mg (according to new-ish suggestions by various WED/RLS specialists, such as Mark Buchfuhrer, see his paper in the link under my name below this post).(Also some interesting articles on iron and augmentation in there). So I think you're making the right move to get off it. If you did get off it, you would see what your baseline symptoms are like - probably less than now, because I suspect after so long you must be augmented - and perhaps you wouldn't need medication at all. But no way to tell without going through the withdrawal, during which your symptoms will become much worse, temporarily.

You should get your ferritin level checked, and start iron supplements if it is under 100, as long as there are no counter-indications. Low ferritin is directly related to worse symptoms, and to increased liklihood of augmentation.
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

sleepdancer2
Posts: 178
Joined: Sun Jun 29, 2014 7:46 am

Re: Introducing myself

Postby sleepdancer2 » Wed May 30, 2018 9:53 am

I am not knowledgeable enough about the specifics of weaning to have a meaningful opinion about your doctor's prescribed schedule. I do have firsthand knowledge with stopping abruptly and it causing neurological issues that turned out to be permanent. Your doc may prefer to err on the side of caution - you will have to figure out how closely to follow their recommendation. Especially in view of how long you've been on the med, I encourage you to step down your dosing and not unnecessarily risk the problems I've encountered. Even when the risks are low, someone has to be the unlucky one in those stats. Getting off the dopamine meds after augmentation was one of the worst but best things I've ever been through. I did not have opioids and in retrospect wish I'd had some help but had not found this board to know what was helping others get through this. Once my system was cleared and my RLS and periodic limb movements were at a baseline, I found using a TENS Unit at bedtime as prescribed for lower back pain really helped take the edge off my symptoms.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest