hello all, i have not posted in a long time, but i want to report that i have been working with low dose naltrexone since may. I started on 0.5mg each night. i titrated up by 0.5mg a night, each week until i was at 3 mg. At that point 90% of my RLS symptoms were gone. In october i titrated up to 4 mg each night and that is covering me even more perfectly. The other measures i take are: avoiding foods with oxalates, collagen, and histamines. I still wake up often in the night with pain, which i was perceiving as possibly part of the RLS. A holistic health coach i have been working with suggested it might be histamines instead. I do not make enough of the enzyme DAO which modulates our histamine levels. And apparently we cycle release of histamines all night long.
So i have been taking sometimes a half-dose of benedryl for the pain. It works. And does not initiate RLS. Sometimes i take 3 capsules of a beef kidney supplement which supplies the DAO and that works well too.
Still learning about my body and what hurts it and what helps it. But after many years of battle with augmentation on mirapex, and not at all happy with gabapenten nor lyrica, i am really pleased with LDN...it's been the best answer for me..
I encourage others who are discouraged to read about it.
Julia
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collageartist52
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i noticed a difference from the very first dose of 0.5mg. I woke up with a sense of peace and hopefulness. And that was a huge insight because when one is going down the rabbit-hole of hopelessness with RLS and all the side effects of mirapex and gabapenten for years and years...one does not even realize how bleak things have begun to feel...but from the first dose, i felt: ok....this is going to help me. I've been on it since may now. And i'm at 4 mg. Have attempted 4.5mg twice and felt it might have made things worse. I will give it a try in another month or so. My problem is that my symptoms are clouded by other problems, like weather changes, and histamine issues, so sometimes it's hard to sort out what is working and what isn't.
It's just outrageous that we, as patients, have to research our own disease and use meds on a trial & error basis to find a solution.Meanwhile, the top UK doctors refuse to accept that iron infusions are now safe and effective and tell patients off for trying LDN or methadone or Buprenorphine. I know recently that a top Professor dismissed outright a request for LDN. 'Where are you hearing these stories" he asked!!
Seriously, the gaslighting around RLS is off the scale and I become angrier by the day.
I'm so pleased that LDN works for you.
It's on my list, in case Buprenorphine ever fails, or the authorities stop doctors prescribing it.
and we certainly know, based on recent events, that good low-cost, easy solutions are often taken off the market. I'm grateful to my dr who knew nothing about it. I brought him 2 articles and said i'd like to try it and he backed me up right away...he talked to the compounding pharmacist, and went with what the pharmacist recommended...she says she has a lot of patients on it for a variety of conditions, including fibromyalgia, MS, CFS, parkinsons..and they are all doing better on than off...boy, i feel grateful...i have had RLS, badly, for 43 years, and this is the best i have felt.
it's possible to get off gabapenten....hard but possible. I have done it. And also gotten off mirapex 3x...i call both of them "hell drugs". You can do it.
Thank you - I’m worried Gabapentin is ototoxic. Having problems with ear ringing which is not fun. Don’t want to scare anyone for whom Gabapentin is helpful. It’s not a common side effect but I am seeing it in some tinnitus forums. Argh.
i do not know enough about it clinically to speak about it. I just know that it was not for me. I endured it, because i had to take a break from mirapex. This was in the days when they thought you could take a "holiday" from mirapex and then go back on....i was not able to tolerate more than 600mg per day and that was not helpful to the RLS...it was an endurance run from beginning to end and i am just grateful that i found something that helps me
i am jumping in here to say that i did not even know what the term "ototoxic" meant, until i saw it here and looked it up...and in all the years i was put on gabapenten or lyrica, no dr or pharmacist warned me of that potential side effect. I feel fortunate that i did not have that problem, but that is so negligent of them. Also i will say that somewhere on this forum i believe i read that mirapex has been shown to damage our brain's ability to make dopamine. Not sure if that is permanent damage or not. And i am happy to be corrected if i am not right on this. But these treatments are as hideous in another way as RLS itself. That is why i am so grateful for the LDN. I have no side effects at all and it has given me the same effect that the mirapex "miracle" does in the beginning. Here's hoping i will still be saying all this in 5 years.
If you decide to come off gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg (100 - 200 mg) every 2 weeks. If you do so slowly you won't have any.
Interesting that low DAO can increase histamine and for some of us increase RLS. It is difficult to avoid histamines. This article may give some tips to increase DAO
Balance your fat intake
When it comes to updating your diet, some of the most interesting and relevant results for increasing DAO enzymes have been in relation to fat consumption.
Studies have shown favourable results when patients increased their intake of the Omega-9 fatty acid - monounsaturated fats, a primary source of oleic acid. Olive oil in particular was shown to increase the the release of the DAO enzyme into the bloodstream by up to 500%!
Oleic acid has been shown to have other health benefits, too, such as reduced blood pressure, especially when consumed as part of a Mediterranean-style diet. You can cook with olive oil or include nuts like macadamias in your meal plan to help prevent a DAO deficiency.
Meanwhile, the inflammatory Arachidonic Acid, a polyunsaturated omega-6 fatty acid, found in offal, fatty red meat and dairy (especially hard cheeses and eggs) was found to cause the highest increase in histamine, when compared to other foods.
Reducing the amount of Omega-6 in your diet - the kind found in processed foods and vegetable oils - while increasing the amount of Omega-3 fatty acids (including fatty fish, seafood) you eat has been shown to moderate inflammation and reduce symptoms of histamine intolerance.
Important factors in balancing fats include using heat stable oils, including ghee and pressed coconut oil for baking and cooking at high temperatures. You can regularly use olive oil and macadamia oil for light, low heat cooking.
3. Eat the right proteins
The process of digesting protein is largely responsible for the release of the DAO enzyme in the gut. This helps your body deal with ingested amines and histamines, while preventing a build-up of histamine levels in the body.
Therefore, eating clean, healthy proteins is important. Look for grass-fed, organic protein and fresh seafood to increase DAO activity.
4. Minimize harmful ingredients
A common theme in this list is healthy, whole foods. That’s not an accident! It’s important to understand that avoiding artificial ingredients and pesticides can make a huge impact on your digestion, DAO production and even food allergies.
Eating as naturally as possible is always going to be a positive for your health!
5. Supporting gut health
As mentioned, the majority of DAO histamine is produced in the gut. Therefore, promoting your gut health and supporting your gut bacteria through the use of low histamine probiotics provides an important foundation for reducing histamine symptoms. Probiotics are able to increase DAO just like a supplement, through the method of supporting your digestive tract and keeping gut bacteria at healthy levels.
6. Take vitamin supplements
Deficiencies of zinc, copper, vitamin B6 and vitamin C, have also been associated with inflammation, elevated histamine concentrations and reduced DAO activities. Regular supplementation of these nutrients can increase DAO enzymes and may offer further relief from the symptoms of histamine intolerance.
A helpful way to ensure you're meeting your nutrient needs is to take a low histamine multivitamin with minerals which can prevent or improve existing nutrient deficiencies.
7. Find a DAO supplement
Another simple way to increase your DAO enzyme levels are with a natural DAO supplement. These can be taken as a capsule and may offer an easy way to help reduce symptoms of histamine intolerance.
Supplementing with DAO enzymes directly is one of the fastest and most and powerful ways to increase DAO levels and help break down incoming histamine to reduce symptoms.
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