Help Please

For everything and anything else not covered in the other RLS/WED sections.
badnights
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Posts: 4934
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Help Please

Postby badnights » Sun Oct 21, 2018 6:26 am

Hi Xwelcome, you sound like you're suffering tremendously. It's so hard to go through the torture of WED/RLS let alone other medical issues on top of it. You really need a doctor who understands RLS/WED. Are you anywhere near one of the RLS Quality Care Centers? At those places you can be sure of being treated by someone who knows the disease, and understands augmentation. See https://www.rls.org/treatment/quality-care-centers

Steve has described augmentation and Holland has indicated the importance of getting your ferritin level tested. You should also learn as much as you can about the disease, the medications used to treat it, and augmentation. Here are some things to get you started:
- As Steve mentioned, there is a Forum called Augmentation here. There are Sticky Topics at the top of that Forum with links to useful information.
- One of the most useful things - whether or not you are augmenting - is the Foundation's Medical Bulletin for healthcare providers (it's great for patients too!). Follow the link in my signature (below all my posts) for how to get it. (One of the Sticky topics will also guide you there). The Foundation also has a lot of smaller brochures on topics like RLS triggers, augmentation, and medications.
- There is a sticky topic called "A good place to start" in the Just Joined forum.

Does your current doctor knows that you're taking gabapentin along with the Keppra? As Steve said, it;s very important that he/she knows. It might be too much and might be contributing to the drugged feeling. No surprise that your WED/RLS goes thru the roof when you stop either of those, since meds of that class are used to treat WED/RLS - so all this time, you;ve been trreating it with the gabapentin and probably the Keppra, and now the Neupro as well.

The way you describe feeling drugged all day then waking up at 10 and being up all night... it might not be the same but I frequently feel dopey all day, then when it's time to sleep, my brain wakes up and feels alert, and I can't sleep at all without a sleeping aid (zopiclone). For years, I gradually migrated to a later and later schedule, until finally I was going to bed at 7 AM. I was opposite to the rest of the world, and I think also part of my body was still on the normal schedule, while part of it wasnt, so I felt really messed up all the time.

I'm almost normal now, so don;t despair. You can get sorted out, you just need knowledgeable care. And no matter what, you should arm yourself with knowledge. I hope this is not overwhelming! Hugs to you.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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