Search found 431 matches

by Frunobulax
Sun Jan 14, 2024 8:41 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Another year of relief (Low-oxalate diet)
Replies: 130
Views: 7285638

Re: Another year of relief (Low-oxalate diet)

Vitamin C does convert to oxalic acid in vitro, but I don't see the connection to the TCA cycle I'm afraid. In real life some oxalate sufferers can tolerate high doses of vitamin C while others can't (case reports from low oxalate groups), and it is unclear why we behave so differently. Same for gly...
by Frunobulax
Sun Jan 14, 2024 12:26 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Another year of relief (Low-oxalate diet)
Replies: 130
Views: 7285638

Re: Another year of relief (Low-oxalate diet)

I agree that this is one possible pathogenesis. If we assume that an iron deficit is responsible, other possible causes are an iron deficit (accounting for the 50% of sufferers that get relief from an iron IV) and other impairments of iron transport than oxalates. I'm convinced that oxalates aren't ...
by Frunobulax
Wed Oct 04, 2023 9:30 am
Forum: Prescription Medications
Topic: Anti-inflammatory medications
Replies: 5
Views: 5984

Re: Anti-inflammatory medications

This all leads me to wonder if anyone has explored the possible role chronic inflammation in RLS, or if anyone has any experience with nsaids as an adjunct to therapy? Some people believe in chronic inflammation as root cause of RLS. Inflammation does inhibit iron transport, moving iron out of the ...
by Frunobulax
Wed Oct 04, 2023 9:29 am
Forum: General Topics: RLS
Topic: RLS constantly changing
Replies: 4
Views: 5871

Re: RLS constantly changing

I had "restless arms" (urge to move only in the arms, not the rest of my body) when I tried gabapentin and came off pramipexol/mirapex. But that was 10 years ago. Now it's either legs or my whole body.
by Frunobulax
Wed Oct 04, 2023 9:26 am
Forum: General Topics: RLS
Topic: Explanation of role of ferritin
Replies: 5
Views: 5802

Re: Explanation of role of ferritin

That’s a bit helpful but what is the difference in the roles played by iron and ferritin in RLS? Does a low iron level necessarily mean the ferritin level will be low? Does the iron supplementation for low iron levels also raise low ferritin levels? Can ferritin levels be low and iron levels normal...
by Frunobulax
Wed May 31, 2023 12:34 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Oral Iron Therepy
Replies: 9
Views: 7877

Re: Oral Iron Therepy

When I was first diagnosed, my ferritin was 46. After several months of taking oral iron two or three times a day, it was up to 90 but had no effect on my RLS. I continued taking it once a day for several years and eventually hit 650 and it never helped my RLS. The Johns Hopkins data shows that onl...
by Frunobulax
Sat Apr 15, 2023 9:32 am
Forum: Prescription Medications
Topic: Oxycodone timing
Replies: 0
Views: 20392

Oxycodone timing

I've been on Oxycodone for almost 10 years now, with 20mg a day over 3 doses per day (ER), most recently 5mg in the late morning, 5mg in the late afternoon and 10mg in the evening. There are stretches where I have to go up to 25 or even 30mg a day for a few weeks. I noticed that the dose I take in t...
by Frunobulax
Fri Mar 31, 2023 6:21 pm
Forum: Prescription Medications
Topic: Amitriptyline affecting RLS symptoms?
Replies: 4
Views: 9611

Re: Amitriptyline affecting RLS symptoms?

Didn't come to that. I started with 2mg a day and that was fine. After 4 weeks I went up to 10mg a day and turned into a walking zombie. Couldn't stay awake during the day and was so tired that simple walking felt like moving in deep water. Needless to say I stopped the medication.
by Frunobulax
Fri Mar 10, 2023 8:59 pm
Forum: Prescription Medications
Topic: Amitriptyline affecting RLS symptoms?
Replies: 4
Views: 9611

Re: Amitriptyline affecting RLS symptoms?

It's not mentioned in Buchfuhrers book... Haven't taken it yet, but I would use a very low dosis anyway. (And a bit of sedative effect would come in handy as the oxycodone causes insomnia.)
by Frunobulax
Fri Mar 10, 2023 10:46 am
Forum: Prescription Medications
Topic: Amitriptyline affecting RLS symptoms?
Replies: 4
Views: 9611

Amitriptyline affecting RLS symptoms?

My neuro prescribed Amitriptyline for my headaches. (I'm also getting a MRT.) He recommended to start with a very small dose because I experienced severe side effects in the past from several other drugs including SSRIs and tricyclic antidepressants, so we'll go with 1mg per day for a couple of week...
by Frunobulax
Fri Mar 03, 2023 1:11 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: My journey to 100% relief
Replies: 26
Views: 43125

Re: My journey to 100% relief

Macadwel wrote:
Fri Mar 03, 2023 1:02 pm

You say you eat a lot of pizza what type of sauce do you put on it because I thought with low oxalate we could not use typical pizza sauce.
Tomatos have around 10-15mg oxalates per 100g. The flour is the problem, not the sauce.
by Frunobulax
Fri Mar 03, 2023 1:10 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: My journey to 100% relief
Replies: 26
Views: 43125

Re: My journey to 100% relief

I bake myself a small loaf of bread every three days and also enjoy a lot of pizza. My oxalate table has wheat flour at around 60mg per 100g flour. The only flour that is low in oxalates is corn flour. Rice flour is around 20-30 mg. Buckwheat is extremely high at 260mg. And you won't be satiated wi...
by Frunobulax
Wed Mar 01, 2023 11:36 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: My journey to 100% relief
Replies: 26
Views: 43125

Re: My journey to 100% relief

Be careful how you start your Tramadol holiday. Tramadol is both a mild opioid and an SNRI Anti-depressant. Abruptly stopping the opioid isn't too bad, [...] My neuro would disagree :) He says he had patients stop opiods (for whatever reason), or temporarily go to a higher dose (for example they go...
by Frunobulax
Sun Feb 26, 2023 8:43 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Use of Potassium Citrate for RLS
Replies: 6
Views: 5780

Re: Use of Potassium Citrate for RLS

I wonder if anyone has any experience that they could share? Looks like it is worth taking a closer look. I take about 3-4 grams (3 large 000 capsules) of potassium citrate every day in the evening, to prevent cramping. Have done so for the last 3-4 years. (And if I discontinue it for more than a c...
by Frunobulax
Mon Feb 20, 2023 3:12 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: My journey to 100% relief
Replies: 26
Views: 43125

Re: My journey to 100% relief

I believe over exposure to fluoride damages the lining of the small intestine and contributes to bile salts inappropriately entering the colon. Ingesting the common refined, bleached and deodorized cooking oils made from seeds (corn, canola, soy, etc.) exacerbates the problem of bile salts inapprop...