Search found 547 matches

by legsbestill
Mon Aug 31, 2020 3:25 pm
Forum: Prescription Medications
Topic: Lyrica 300+
Replies: 10
Views: 177

Re: Lyrica 300+

Presumably you have tried iron therapy - or are not suitable for it? Prior to looking at d/as I would be sure to check out EVERY other treatment first because often it seems to turn out that the people who fare least well on new treatment suggestions are those who previously augmented on a d/a. In t...
by legsbestill
Mon Aug 31, 2020 2:59 pm
Forum: Prescription Medications
Topic: Need advice
Replies: 22
Views: 304

Re: Need advice

I note that you say you halved your dose of pramipexole (having increased doubled it a few months ago) in the last few weeks. Did you notice your symptoms getting worse after you reduced the pramipexole? Even if you are not augmented, reducing that drug is likely to cause problems. It seems to me, r...
by legsbestill
Fri Jun 05, 2020 3:28 pm
Forum: General Topics: RLS
Topic: Regular Sleep Schedule
Replies: 15
Views: 514

Re: Regular Sleep Schedule

Although I want to tear my hair out - or more precisely the hair of the person making the comment - when I read recommendations for 'sleep hygeine' as a management technique for rls, I have noticed that, when my symptoms are reasonably controlled, I have a window when I am most likely to get to slee...
by legsbestill
Fri Jun 05, 2020 2:46 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Is it worth scrapping ever tiny bit of caffiene?
Replies: 14
Views: 845

Re: Is it worth scrapping ever tiny bit of caffiene?

Eliminating caffeine made no difference at all to my symptoms. I actually find that when symptoms strike in the night a cup of coffee - fully caffeinated - can sometimes help. On another rls forum there are a number of posters who have noted this. I'm not sure why this would be but wonder if it is s...
by legsbestill
Fri Jun 05, 2020 2:34 pm
Forum: Prescription Medications
Topic: Experience of having IV iron
Replies: 6
Views: 489

Re: Experience of having IV iron

Thank you for this. My first IV iron infusion was deferred due to covid19 restrictions and I don't know when it will be rearranged. I was, however, slightly anxious about the process and it's nice to get the reassurance about it. On a different note, I was thinking of you, Jul2873, as it was thanks ...
by legsbestill
Fri Jun 05, 2020 2:19 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Treating Central Nervous System Inflammation
Replies: 20
Views: 1024

Re: Treating Central Nervous System Inflammation

The diet was: no gluten, no dairy, an appallingly low amount of carbohydrates all of which were vegetables, no added sugar, no refined oils, lots of coconut and avocado oil, organ meats once a week, fish three times a week (wild-caught, cold-water fish), and 9 cups of vegetables daily (3 cups each ...
by legsbestill
Fri Jun 05, 2020 1:20 pm
Forum: General Topics: RLS
Topic: Pain Management
Replies: 6
Views: 485

Re: Pain Management

I have to feel sorry for the doctors who face those thoughtlessly high expectations every day. We really have to step up and start learning about our disease, to be sure our doctors have all the information they need. This is so true but it would be easier to empathise with doctors if they sometime...
by legsbestill
Wed Feb 12, 2020 3:18 pm
Forum: Physical Treatments
Topic: Iron Infusion Worked for me
Replies: 17
Views: 2288

Re: Iron Infusion Worked for me

My incredibly accommodating GP has persuaded a haematologist to give me an IV infusion of iron in spite of my serum ferritin being around 40, based on the published recommendations of the IRLSSG which I drew to his attention. I am hoping to get it next month. It looks like my health insurance will c...
by legsbestill
Wed Oct 02, 2019 10:01 pm
Forum: Prescription Medications
Topic: Medication for irregular use
Replies: 15
Views: 912

Re: Medication for irregular use

I find kratom great for intermittent use but care is required to ensure it is legal where you are travelling to (or that you have a very effective concealment strategy - I took a weekend break to Hungary last year and when I was unpacking on my return discovered I had unwittingly taken a supply of k...
by legsbestill
Wed Oct 02, 2019 9:56 pm
Forum: Prescription Medications
Topic: Getting off Pramipexole
Replies: 16
Views: 1051

Re: Getting off Pramipexole

Next week I have a GP appointment and I will ask her to help me further as I take the dosage lower. Will have with me RLS Foundation documentation regarding augmentation and withdrawal. Betty, I wonder should you also bring the most recent study which finds a link between RLS and increased suicide ...
by legsbestill
Mon Sep 30, 2019 2:55 pm
Forum: Prescription Medications
Topic: Getting off Pramipexole
Replies: 16
Views: 1051

Re: Getting off Pramipexole

I would be inclined to get serum ferritin levels checked prior to discontinuing pramipexole completely and if it is less than 100 (make sure that you get the actual figure - not just that you are 'normal') start a supplement. I would focus on making sure that iron levels are as high as possible. Fro...
by legsbestill
Tue Sep 24, 2019 4:47 pm
Forum: Prescription Medications
Topic: Cannabis
Replies: 179
Views: 9047

Re: Cannabis

It is like a miracle. I am delighted for you and also grateful for all the information you are posting. I am another who has found cannabis helpful for rls related insomnia and opioid induced alerting (though not so much for urge to move). I use whole plant so presume I get both THC and CBD. I am co...
by legsbestill
Sat Aug 31, 2019 6:59 pm
Forum: Prescription Medications
Topic: Attempting to get off Ropinirole - again
Replies: 264
Views: 12294

Re: Attempting to get off Ropinirole - again

.75mg - less than 1mg!!! Congratulations!!! You are doing so well. To me one of the worst things about the dopamine agonists is how they gradually, sneakily remove such control as we have over the condition. You are truly taking back control.
by legsbestill
Sat Aug 31, 2019 6:51 pm
Forum: Prescription Medications
Topic: Effectiveness of Neupro patch
Replies: 15
Views: 671

Re: Effectiveness of Neupro patch

Hi Redshoes, It is great that you are getting relief but 0.5mg of pramipexole seems high. From memory the US dose is in aggregates of .125 (it is different here in Europe). My understanding was that the maximum dose recommended by experts for RLS was recently revised downwards and is now 0.25mg. Giv...
by legsbestill
Wed Aug 28, 2019 1:02 pm
Forum: Prescription Medications
Topic: Cannabis
Replies: 179
Views: 9047

Re: Cannabis

I watched a very interesting youtube video by one of the top researchers in Israel concerning cannabis treatment of autistic children who exhibited violent behaviour. From memory, they ran out of the strain that was having a pronounced positive effect on the behaviour of the children. They replaced ...