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by SquirmingSusan
Wed Jan 28, 2015 5:09 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Nicotine helps me
Replies: 3
Views: 2870

Nicotine helps me

For a couple years now, I have been using an e-cig to help manage the EDS of narcolepsy. I actually started out trying nicotine patches, but they are expensive, and after several hours I would get intense anxiety and need to remove the patch. I have never smoked cigarettes, even though a high percen...
by SquirmingSusan
Sun Jan 25, 2015 11:52 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Magnesium........does it help??
Replies: 35
Views: 12910

Re: Magnesium........does it help??

I know, right! I used to take senna every single day. Now the magnesium keeps me going, if you know what I mean. 8)
by SquirmingSusan
Sun Jan 25, 2015 12:17 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Magnesium........does it help??
Replies: 35
Views: 12910

Re: Magnesium........does it help??

I have been following this group: m They have some very interesting information and ideas about magnesium. They insist that having serum magnesium tested will not reveal a mag deficiency unless it is really extreme, because the body will rob mag from the cells to keep an even level in the bloodstrea...
by SquirmingSusan
Sat Jan 24, 2015 11:15 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Wahls diet for WED? Trying it.
Replies: 96
Views: 28903

Re: Wahls diet for WED? Trying it.

Hi Beth. It's been way too long since I've checked into this forum. Interesting that you have been trying out the Wahls Diet to find out if it would help with your RLS/WED. I have been on a similar journey with diet, since December 2013, when I stopped eating gluten. I did it to find out if it would...
by SquirmingSusan
Thu Feb 16, 2012 5:14 am
Forum: Prescription Medications
Topic: WENT ON SUBOXONE TO AVOID RLS WITHDRAWL FROM PAIN MEDS
Replies: 13
Views: 3426

Re: WENT ON SUBOXONE TO AVOID RLS WITHDRAWL FROM PAIN MEDS

Isn't Clonidine (a blood pressure medication) used to help with the RLS-like symptoms when withdrawing from opiate painkillers like methadone? I have that info filed somewhere in the deep dark recesses of my brain. It might be worth checking into.
by SquirmingSusan
Thu Feb 16, 2012 5:09 am
Forum: Everything Else...just no RLS!
Topic: Christmas 2012
Replies: 7
Views: 2386

Re: Christmas 2012

Oooh, that sounds like so much fun! I can't imagine planning anything that far ahead, though. I would forget all about it by the time the performance came. Although I have a smart phone now and that really helps with that kind of stuff. We spent a fortune on tickets to Les Miserables in December, bu...
by SquirmingSusan
Wed Nov 30, 2011 9:45 pm
Forum: Physical Treatments
Topic: Blood Pressure cuff
Replies: 10
Views: 3155

My understanding was that she was using a blood pressure cuff until she could get a pneumatic compression device that she had ordered from Sears. Unfortunately the link she posted is broken so we may never know. Anyway... I've seen less expansive devices around, like at Walgreens, but not recently. ...
by SquirmingSusan
Wed Nov 02, 2011 7:45 pm
Forum: Prescription Medications
Topic: nausea and RLS
Replies: 8
Views: 2305

I took diazepam for years to manage vertigo from inner ear damage. It also helped with my RLS. In more recent years I have been able to manage my vertigo with ginger capsules, which also work well for nausea.
by SquirmingSusan
Wed Nov 02, 2011 2:35 am
Forum: Everything Else...just no RLS!
Topic: Finding Family
Replies: 19
Views: 5907

Betty, sorry I missed this. In addition to RLS/WED I also have been diagnosed with narcolepsy, which means that the part of my brain that controls sleep and wakefulness is "broken." On my own I am not able to achieve quality, consolidated sleep and I am not able to stay awake either. So I ...
by SquirmingSusan
Sun Oct 09, 2011 3:07 am
Forum: Everything Else...just no RLS!
Topic: kids/grandkids :)
Replies: 7
Views: 2297

Hahahahaha!!! So precious.
by SquirmingSusan
Sun Oct 09, 2011 3:05 am
Forum: Everything Else...just no RLS!
Topic: Finding Family
Replies: 19
Views: 5907

Hello my lovely restless leggers! I actually have had a bit of an upswing. I made it to a clergy training event last week, and it was wonderful reconnecting with some old friends and making new friends around the state. I got the last of my references lined up for my ministerial profile, and am gett...
by SquirmingSusan
Sun Oct 09, 2011 2:37 am
Forum: Prescription Medications
Topic: Anyone tried a muscle relaxant?
Replies: 4
Views: 1413

Benzos used to be commonly prescribed to treat WED/RLS, usually clonazepam. They are now widely believed to not directly treat the RLS, but to sedate people to the point of being able to sleep in spite of the RLS. That said, a lot of people do seem to get relief from those drugs. I took diazepam for...
by SquirmingSusan
Sun Oct 09, 2011 2:29 am
Forum: Prescription Medications
Topic: Anyone try or currently take Lamictal/lamotrigine?
Replies: 14
Views: 4132

I do remember there being a couple people in this forum who have had good experiences with lamotrigine. Have you tried the search engine here? Anticonvulsants are used to treat WED/RLS, but most doctors stick with Lyrica or Neurontin (gabapentin) because they aren't associated with the more serious ...
by SquirmingSusan
Sun Oct 09, 2011 2:21 am
Forum: Prescription Medications
Topic: Can Requip cause joint pain?
Replies: 7
Views: 1808

I had horrible leg pain from Requip, and also from Mirapex. Requip was wonderful for the first 2-3 nights. My legs had never felt so, so, well they had never been so sensation free! And relaxed. But after about 2 weeks I started to have pain, and not just when it wore off, but about the time it was ...
by SquirmingSusan
Sat Sep 24, 2011 2:16 am
Forum: Prescription Medications
Topic: Horizant
Replies: 8
Views: 1610

I have also tried Baclofen, and it didn't help me at all. It made it harder to sleep, too.