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by badnights
Mon Sep 16, 2019 6:17 am
Forum: Prescription Medications
Topic: I'm finally getting an infusion
Replies: 15
Views: 117

Re: I'm finally getting an infusion

Now that I know what to ask for, I can get the blood work done first. I didn't bother this time, although I had a standing order for a ferritin test to be repeated whenever I decided, because my ferritin was rising even though I wasn't taking iron. I figured the value would be kind of meaningless. I...
by badnights
Mon Sep 16, 2019 6:07 am
Forum: Augmentation
Topic: Augmentation and gut microbiome
Replies: 12
Views: 247

Re: Augmentation and gut microbiome

ferritin tested recently, came in at 402. She also ordered my vitamin D level checked, that came in low as usual at 23, even after midday summer sun exposure 3x/week for fifteen minutes. I live at altitude and have fair skin that burns easily. I mention this because we’re wondering what’s going: is...
by badnights
Sun Sep 15, 2019 5:59 pm
Forum: Prescription Medications
Topic: Switching from ropinirole to pramipexole/mirapex Starting dosage?
Replies: 2
Views: 41

Re: Switching from ropinirole to pramipexole/mirapex Starting dosage?

Hi meiatflask I too have that desire to change one variable at a time, but I have realized that I am not going to live long enough to try everything that way. There are just too many variables for one lifespan. However, you can switch now for another reason. The iron will not take effect for a month...
by badnights
Sun Sep 15, 2019 5:23 pm
Forum: Augmentation
Topic: Augmentation and gut microbiome
Replies: 12
Views: 247

Re: Augmentation and gut microbiome

But there is certainly another, long term effect where RLS symptoms subside slowly after switching to opioids, which may be due to the regeneration of the microbiom. At least for me, I had 8 months with really bad RLS symptoms and it took a full year until my medication (30mg Oxycodone even back th...
by badnights
Sun Sep 15, 2019 6:53 am
Forum: Augmentation
Topic: Augmentation and gut microbiome
Replies: 12
Views: 247

Re: Augmentation and gut microbiome

A year ago, I had two ferric carboxymaltose IV treatments; sadly no change in symptoms noted in the weeks and months following. Another mystery... But in the meantime, I want to be done with DAs, the risks are just too high. Bridgercan, I wonder if the IV iron simply couldn't overcome the augmentat...
by badnights
Sun Sep 15, 2019 6:45 am
Forum: Prescription Medications
Topic: I'm finally getting an infusion
Replies: 15
Views: 117

Re: I'm finally getting an infusion

Our tai chi instructor could hear the ants walking, even despite all of those traffic noises, so I'm sure whatever she wills, she gets :). I did enjoy the tai chi immensely; for some reason I find it more calming than yoga. Sometimes I do some when mild symptoms wake me at night - it's meditative, p...
by badnights
Sun Sep 15, 2019 6:33 am
Forum: Physical Treatments
Topic: Any luck with a sleep study?
Replies: 23
Views: 1098

Re: Any luck with a sleep study?

I believed I had RLS, but it was never officially diagnosed. Meanwhile, I also have essential tremor and epilepsy. Not having seen a neurologist in more years than I care to admit, I went to one, who prescribed Gabapentin. That stopped the flopping legs and made sleep easier. She sent me to an epil...
by badnights
Sun Sep 15, 2019 3:43 am
Forum: Just Joined?
Topic: New to RLS forum
Replies: 14
Views: 180

Re: New to RLS forum

Hi slanecd I take hot baths and finally found something that is working for me. I started on gabapentin and then Horizant but they didn’t work well. Now I am on the Neupro patch. It’s pretty good but there is some nausea. I am hoping it lasts as I am fearful it will come back every night. I'm glad t...
by badnights
Sat Sep 14, 2019 7:36 am
Forum: Prescription Medications
Topic: I'm finally getting an infusion
Replies: 15
Views: 117

Re: I'm finally getting an infusion

Thanks, guys. My thoughts on the expense are that hopefully my doctors in Canada will see the benefit, see that Dr B will confidently prescribe the iron, and this will cause them to decide to prescribe it themselves. If they do, I have at least a chance that my insurance will pay a portion of it. Th...
by badnights
Sat Sep 14, 2019 7:30 am
Forum: Prescription Medications
Topic: Attempting to get off Ropinirole - again
Replies: 143
Views: 3947

Re: Attempting to get off Ropinirole - again

kratom is a plant with opioid-like properties. you can order it online. Board members have used the following places and verified them as good suppliers (as of last year I think): So Cal: https://www.socalherbalremedies.com (search for speciosa, a tea) Velvet Soul Naturals: https://www.velvetsoulnat...
by badnights
Fri Sep 13, 2019 7:28 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: NADH Article by Professor George D. Birkmayer, MD/PhD, Vienna
Replies: 5
Views: 138

Re: NADH Article by Professor George D. Birkmayer, MD/PhD, Vienna

I did take it for a long time - maybe a year. I took a lot of supplements on the advice of a functional medicine doctor, and gradually eliminated most of them one by one. I didn't notice any worsening of WED/RLS when I stopped NADH. I did improve around the time I was taking NADH but I could not lin...
by badnights
Fri Sep 13, 2019 7:21 am
Forum: Just Joined?
Topic: Tightening in calf
Replies: 9
Views: 149

Re: Tightening in calf

My current specialist is indeed a sleep doctor as well, with advanced psychiatric training, and has severe RLS himself. Consequently he clearly understands the suffering and quality of life issues RLS can bring. He asks the questions others haven't. I'm soooo thankful that I finally found him!! If ...
by badnights
Fri Sep 13, 2019 7:20 am
Forum: Just Joined?
Topic: Tightening in calf
Replies: 9
Views: 149

Re: Tightening in calf

MonkNYC. have you had any blood tests done recently for iron parameters, particularly ferritin which is not normally requested but can be useful in deciding how to treat WED/RLS? If your ferritin is low (lower than 100, certainly if it's lower than 75) you should probably be taking oral iron supplem...
by badnights
Fri Sep 13, 2019 6:35 am
Forum: Prescription Medications
Topic: I'm finally getting an infusion
Replies: 15
Views: 117

Re: I'm finally getting an infusion

Tonight I had a nurse practitioner arrive at the airB&B I'm staying at, set up the IV pole and prepare the bag, find a vein and get the IV going, while the lady whose house it is and another paying guest sat and chatted with me and the NP. It was one of the more bizarre experiences of my life. T...
by badnights
Fri Sep 13, 2019 2:14 am
Forum: Prescription Medications
Topic: I'm finally getting an infusion
Replies: 15
Views: 117

Re: I'm finally getting an infusion

I was originally going to ask if I could get a second infusion a week later, as per the usual protocol, but not at 3000 a pop :( and also I have a bigger concern now. I had to go to the lab that did my blood work last week, physically go there and wait at the counter for 30 minutes, to get them to r...

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