Intrathecal infusion of low dose morp... - Restless Legs Syn...
Intrathecal infusion of low dose morphine successfully used to RLS without inducing opioid tolerance.
Since people with RLS don't really develop tolerance after the first year I can't imagine doing this. The article discusses 7 patients. "The effects last only as long as the infusion continues."
Looks like it’s for very severe cases i.e. people refractory to all treatments including opioids.
I also saw a paper by Stanford about how they’ve found that cerebrospinal fluid of RLS patients is deficient in natural opioids or something like that ( I am not a 100% sure about this as I don’t recall what I read since it was a while back and for the life if me can’t find the paper again).
Early this year two papers about opioids, including something about endorphines (opioid-like particles produced by our bodies). I have been meaning to study them and provide a summary, but things got in the way. I do remember indeed something about low levels of endorphines in people with RLS, but can’t remember in what part of body/brain/nervous system/etc.
Remind me!
PS Not at home now, but hiking.
Found it!
The Melanocortin and Endorphin Neuropeptides in Patients with Restless Legs Syndrome
pubmed.ncbi.nlm.nih.gov/383...
Excerpts:
CSF β-EDP was lowest in painful RLS, intermediate in nonpainful RLS, and highest in controls (8.0 ± 3.4 vs 10.8 ± 3.1 vs 12.3 ± 5.0pg/ml, ANOVA p = 0.049). The ratio of the sum of CSF α- and β-MSH to CSF β-endorphin was highest, intermediate, and lowest in painful RLS, nonpainful RLS, and controls (p = 0.007).
Interpretation: CSF β-MSH is increased and CSF β-endorphin decreased in RLS patients with painful symptoms. ANN NEUROL 2024;95:688-699.
healthunlocked.com/rlsuk/po...
I posted about it a few weeks back.
Dr Koo is doing a study.
Just curious, afaik, gabapentinoids and iron are first line, followed by DAs and then Opioids. Since DAs inevitably make the condition worse for most people, is it possible to jump to opioids in case the gabapentinoids become ineffective?
Excellent question and it most certainly causes severe problems for those who have never been prescribed DAs.
We recently did have a member who failed iron and gabapentinoids and his doctors refused to prescribe opioids until he had tried DAs first. The doctors quite correctly pointed out that the Mayo Clinic algorithm does still have DAs as second line treatment!!!
So, we are stuck between a rock and a hard place. Top experts will no longer prescribe DAs & Dr Buchfuhrer says the ONLY reason they are still referenced in the Mayo Algorithm is because of pressure from the European doctors who still refuse to accept the scale of augmentation. In Germany, they still prescribe Levodopa!
It's why Dr Berkowski re wrote the guidance for The American academy of Sleep medicine and relegated DAs to "end of life scenarios".
If I were a newly diagnosed RLS patient I would refuse DAs after gabantinoids until and unless I received a cast iron guarantee from the prescribing doctor that he would prescribe methadone or buprenorphine and benzos and pay to have me admitted to a safe rehab place when the inevitable augmentation kicks in.
We all know that DAs will all cause severe worsening eventually, but most doctors are still in denial, because they don't see as many RLS patients as the top experts.
This is infuriating because afaik augmentation from DAs in a lot of cases is permanent.
I have a quick question about,
"Excellent question and it most certainly causes severe problems for those who have never been prescribed DAs"
Are you saying that using opioids straight after Gabapentinoids causes severe physical/medical problems? Or problems w.r.t being prescribed DAs?
After taking one 100 mg. pill of gabapentin at bedtime made me dizzy with blurred vision the next day, my primary switched me to 30mg. codeine-acetaminophen immediately. (Most nights, that's all I need, though I sometimes need 2 pills.) She made no mention of DAs. I was lucky to have a well-informed practitioner. I'd suggest you go see yours armed with articles about augmentation on DAs.
In the Mayo Algorithm it says "Treatment should start with an alpha2-delta ligand (gabapentin, pregabalin, or gabapentin enacarbil) unless patient factors suggest that a nonergot dopamine agonist (pramipexole, ropinirole, or rotigotine patch) would be safer.
Factors favoring a dopamine agonist as initial treatment include obesity and its complications, past or present moderate or severe depression, gait instability, disorders causing respiratory failure, and previous history of substance use disorder. Alpha2-delta ligands can worsen these conditions."
It should have said that then opioids should be prescribed except for previous history of substance use disorder.
I think there are a couple of interesting takeouts. The patients in the sample were described as getting no relief from "oral dopaminergic, gabapentinoid, or opioid drugs" but when injected into the spine, bypassing the blood brain barrier (BBB), they did experience relief of symptoms. This might indicate that there are problems with the oral delivery of the drug for some people, maybe it's not passed through the digestive system or the BBB well so the problem could be related to the transport of the drug rather than it's effectiveness once in the right place. It also appears to confirm that opioids are a useful therapy as all patients experienced relief, albeit in a small sample with no controls, and the relief came at low doses. I'm don't know how convenient or otherwise the method of adminstration was.
It's still not addressing the cause of RLS, just dampening down the symptoms.
What's the cause? how to address the cause?
Most commonly inflammation from refined carbohydrates (e.g. sugar and bread) and refined seed oils (what's commonly called 'vegetable oil'). The answer is to change your diet, avoid processed food.
youtu.be/Rpo7oOg0Mjw?si=XKP...
Personally I have had a pretty poor diet for the past 7-8 months (mostly been eating out) and don’t exercise at all. I wonder if fixing these will be enough to put a significant dent on my symptoms.
There are a few responses from people I see here on the forum who say they’ve tried low oxalate and anti inflammatory diets and unfortunately it did nothing for them.
I do ho you’re right and that they’ve been messing up trying to follow the right diet in some way. 🤞🤞🤞
People who say that they've tried these diets and not found them helpful have probably not been rigorous enough or don't realise that refined seed oils linger in the body and have a half life of four years so people who expect these diets to work like popping a pill will be disapointed.
I’m willing to try. But seems hard. Seed oils are literally everywhere including things that aren’t even fried like whole-grain crackers or bread products, protein bars or shakes, dressings, sauces etc.
If you don’t mind, could you mention how you’ve been doing it?
But crackers and bread are processed foods and are amongst the unhealthiest you can get. The only whole grains are those which my be sprinkled on top, most of the cracker or bread is made from intensively milled grain where the protective fibrous sructure of the outer shell has been destroyed and on top of that you've got the added seed oils not to mention the gluten which causes leaky gut which can lead to autoimmune diseases like IBS, Chron's etc. I don't eat any grain based foods at all.
Hunger pangs are driven by a hormone called ghrelin and the relesae of ghrelin is driven by blood sugar which comes from eating carbs. When you reduce your carb intake your hunger pangs get weaker and yo don't feel the urge to snack regularly. I only eat two meals a day and do not eat snacks.
Not true. I was very strict and very rigorous.Inflammation is most commonly caused by viral and bacterial disease.
Do you have figures to back that claim up? besides the poster has not mentioned any viral infection and in the lack of viral infection or heavy metal poisoing which is rare my statements are valid.
Viral infection is NOT rare Eryl. 90% of the population has had Epstein Barr Virus. And nearly every human on the planet has had Covid.
Well I haven't had Covid nor a vax. The diet that I's suggesting will strengthen the innate immune system to enable people to resist viruses.
Most Covid infections are asymptomatic Eryl. You will very likely have had Covid.The first cases in the UK were spread by a man who had zero symptoms.
healthline.com/health/what-... are asymptomatic with SARS
I may have been exposed to covid but being asymptotic proves that my innate immune system was strong enough to fight the virus off. I used to get cold sores regularly. They are caused by a herpes virus which is the fmily to which the Epstei-Barr virus belongs. Since I changed my diet I have not suffered a single cold sore nor ny other illness other than mild hayfever.
RLS is a tough customer! Fortunately for me, iron supplements mostly solved the severe symptoms and total lack of sleep. I experiment with diet and supplements constantly. Bear in mind ANY diet or supplement therapy is a long haul - nothing will be immediate - with many months to see results. Most all processed foods are pro-inflammatory. Eliminating them and substituting whole foods is a good first step. I eat a monstrous breakfast, reasonable midday meal and a smaller dinner. "Eat breakfast like a king, lunch like a prince and dinner like a pauper!"
Were you Iron deficient before you started supplementing with Iron? Also I am unable to tolerate ferrous sulphate. Taking the bisglycinate form instead. The problem is that my ferritin is already above 110. I wonder if it will help in any way. Most people here are saying that it probably wont. Some have tried raising it to 200 and have claimed that it has helped.
Also, now that I have finally graduated from grad school, I can make some lifestyle changes. Starting my replacing my Pizza n Instant Ramen diet with something more wholesome.
Docs all said "Nothing to see here, Iron is normal!" My Ferritin was 49. I happened to find information on the Johns Hopkins Neurology website about the iron link. Then I found a "home remedy" Blackstrap Molasses (it contains a small amount of iron). It immediately cut into the RLS. Supplementing with Ferrous Bisglycinate Chelate (mid-morning, empty stomach). Raised Ferritin to 105 in 3 months. Why I was iron deficient in the first place I have no idea, but I suspect it was a course of Ciprofloxacin antibiotic therapy for a prostate infection sometime previous and eventual gut dysbiosis, and/or a head injury some months prior.
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