Search found 561 matches
- Mon Aug 31, 2020 2:59 pm
- Forum: Prescription Medications
- Topic: Need advice
- Replies: 28
- Views: 8733
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...
- Fri Jun 05, 2020 3:28 pm
- Forum: General Topics: RLS
- Topic: Regular Sleep Schedule
- Replies: 18
- Views: 7834
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...
- 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: 6744
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...
- Fri Jun 05, 2020 2:34 pm
- Forum: Prescription Medications
- Topic: Experience of having IV iron
- Replies: 9
- Views: 9291
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 ...
- Fri Jun 05, 2020 2:19 pm
- Forum: Non-prescription Medicines, Supplements, Diet
- Topic: Treating Central Nervous System Inflammation
- Replies: 20
- Views: 10306
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 ...
- Fri Jun 05, 2020 1:20 pm
- Forum: General Topics: RLS
- Topic: Pain Management
- Replies: 6
- Views: 12508
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...
- Wed Feb 12, 2020 3:18 pm
- Forum: Physical Treatments
- Topic: Iron Infusion Worked for me
- Replies: 17
- Views: 13954
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...
- Wed Oct 02, 2019 10:01 pm
- Forum: Prescription Medications
- Topic: Medication for irregular use
- Replies: 15
- Views: 2214
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...
- Wed Oct 02, 2019 9:56 pm
- Forum: Prescription Medications
- Topic: Getting off Pramipexole
- Replies: 16
- Views: 1984
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 ...
- Mon Sep 30, 2019 2:55 pm
- Forum: Prescription Medications
- Topic: Getting off Pramipexole
- Replies: 16
- Views: 1984
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...
- Tue Sep 24, 2019 4:47 pm
- Forum: Prescription Medications
- Topic: Cannabis
- Replies: 180
- Views: 29381
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...
- Sat Aug 31, 2019 6:59 pm
- Forum: Prescription Medications
- Topic: Attempting to get off Ropinirole - again
- Replies: 326
- Views: 51634
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.
- Sat Aug 31, 2019 6:51 pm
- Forum: Prescription Medications
- Topic: Effectiveness of Neupro patch
- Replies: 15
- Views: 1520
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...
- Wed Aug 28, 2019 1:02 pm
- Forum: Prescription Medications
- Topic: Cannabis
- Replies: 180
- Views: 29381
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 ...
- Wed Aug 28, 2019 12:54 pm
- Forum: Prescription Medications
- Topic: Excellent article on opioids
- Replies: 47
- Views: 4260
Re: Excellent article on opioids
Hi Betty, I am in RoI where the consumption of kratom is illegal. I order it from kraatje.eu which is based in the Netherlands. They send it labelled 'colouring powder' (ie a clothes dye) which, as I understand it, is not illegal, although it is clear from their website that it is anticipated that t...