I AM COMING OFF OF PREGABALIN, I AM ON 200MG PRESENTLY.
I WANT TO START SUPPLEMENTS AND WANT TO MAKE SURE I AM DOING THE RIGHT THING. MAGNESIUM+B6 VITAMIN C+E FOR ABSORBENT OR IRON THAT I AM PRESENTLY ON. I WANT TO ONLY TAKE WHAT IS NECESSARY.
NEED YOUR ADVICE
THANK YOU
hi , I also want to come of pregabaline.
Now from 150 down to 100 mg.
Feel like I have the flu and brainfog.
Are you having troubles coming down?
I take multivitamins, vitamine D , magnesium , vitamine C.
I read an article about pregabaline and the connection with dementia, I got really scared…..hope to get some advice on this forum.
Regards from Holland xx
Many people struggle with coming off pregabalin. If you're experiencing problems, try going slower. It really depends on dose/amount of time on pregabalin but people say that reducing by 25mg per month is generally manageable.
I am currently taking pregabalin and your mention of the risk of dementia has freaked me a bit, where did you read this and do you have any more information please
See the post today on this subject.
It's definitely a worry for me as Dementia runs in my family I'm not sure what to do now im taking 225mg of pregabalin
If you decide to come off it, reduce by 25 mg every 2 weeks and if still having problems go even slower. If you do so you will have no withdrawal effects from pregabalin.
Ok thank you
Definitely concerning
YES I HAVE TROUBLES TOO COMING OFF PREGABALINE. PANIC ATTACKS.
WHY DO YOU TAKE VITAMIN D?
Reduce by 25 mg every 2 weeks and if still having problems go even slower. If you do so you will have no withdrawal effects from pregabalin.
I wish you'd stop spouting this line Sue when it's simply not true. People do experience withdrawal symptoms even when tapering slowly. Tapering slowly reduces the likelihood of withdrawal symptoms but doesn't always eradicate them entirely.
healthline.com/health/how-t... "Tapering off will help you avoid side effects"
If you follow the thread, you'll see I was referring to your assertion regarding pregabalin. Doctors and pharmacists tell people that they can stop pregabalin cold turkey. It doesn't mean they're correct. Just as a Healthline article can't be relied on to adequately reflect the hundreds of real-life experiences with gabapentinoid withdrawal. I'm on several pregabalin withdrawal support forums and the majority of people reporting their experience say that they still have withdrawal symptoms when tapering by 25mg per month.
Withdrawing from pregabalin and gabapentin are basically the same since they are both gabapentinoids.
What are the name of the support forums you are on?
With all due respect Sue, I must agree. 25mg is a much too big of a cut for me and my am suffering from terrible withdrawal symptoms, even a slower taper produces withdrawal symptoms as everyone is different. The links are appreciated as well as your desire to be helpful but the authors of this information quite obviously never went through withdrawals. I had same issue with benzo and now because of a failed very controlled benzo taper I ended up back on benzos with a damaged CNS and now on pregabalin too and bedridden. I can't handle the pregabalin or the withdrawals and I am afraid that I am not going to make it.
I AM OKAY, SOME PANIC ATTACKS, WHY DO YOU TAKE VIT D
Flu like symptoms are a withdrawal symptom from gabapentin. Reduce by 25 mg every 2 weeks and if still having problems go even slower. If you do so you will have no withdrawal effects from pregabalin.
Firstly, besides coming off pregabalin I'm uncertain whether you are still also using pramipexole (Mirapex)? The latter could be causing a lot of your RLS problems: it helps RLS initially but eventually for the majority makes things worse. It would be good to clarify this.
Secondly, if we're talking about supplements, iron is the most important for most RLS sufferers - increasing iron levels helps many, but it partly depends on what your current levels are. SueJohnson gave you full details in a previous reply to you on getting a full iron panel blood test, on how to prepare and on what the results mean. Have you had this done following her guidance, and if so what were the actual numbers? This will tell us whether/how much iron is likely to benefit you.
Thirdly, yes taking magnesium helps or helped some (such as me, who had perfectly good iron levels) but not others (such as my brother). But in my view you need to sort your pregabalin/pramipexole/iron situation first before considering what other supplements to take.
Sue also gave you other guidance on RLS to consider, and also advised that as you have tried and not got on with both gabapentin and pregabalin that you could benefit from a low dose opioid. But again, I think we need to clarify exactly what you are taking at present and what your iron levels are.
YES I AM ON MIRAPEX. I WILL COME OFF OF THAT TOO. I TAKE IRON IN MY BLISTER PACK. THAT IS WHY I TAKE VITAMIN C
To come off Mirapex (pramipexole), reduce by . half of a .088 [.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off Mirapex although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Hi You'll always find Omega 3 at the top of the list for crucial supplements. Multi B is also very helpful. I would add in other vitamins ... A, C, D even K. I also highly recommend curcumin and any other natural anti-inflammatory you can afford. Good luck with your transition!
Curcumin is counter indicated by specialists, I believe. Also be careful with those B vitamins unless you’re sure you’re deficient.
That's interesting. Why is curcumin counter indicated by (RLS?) specialists?
An awful lot of herbs increase serotonin. I think Sue is the one who alerted me to curcumin. I myself don’t tolerate most herbs.
Curcumin is the active ingredient in Turmeric. Turmeric is considered an effective anti-inflammatory and anti-cancer agent. However, an experiment in mice has shown that chemical compounds in turmeric can bind to iron in the gut and cause iron deficiency. In fact, turmeric is one of the spices known to inhibit iron absorption by 20-90% in humans. We want our ferritin increased so Curcumin is not a good supplement.
ncbi.nlm.nih.gov/pmc/articl...
Thanks for the explanation. 👍
Thanks for the blurb, I hadn’t checked the details out as I find there are so many supplements to worry about 😥 and I had no problem imagining that it was also a problem.
THANK YOU, I WILL COME OFF OF PREBAGALIN FIRST AND THEN DECIDE WHAT VITAMINS TO TAKE.
Hi,
For me works white Greek yogurt about 4 table spoons in the morning and in the evening if I have bad RLS but normally once a day it is ok to take it. I read somewhere that yogurt contains phosphate that my body for some reason cannot storage the level I need. Also in the past I found that 2 table spoon of apple cider viniger(ACV) helped, mixed with water to drink in the morning one hour before breakfast. ACV apparently contains K2 Vitamin that helps with absorption of some other Vit or minerals. After about one or two months of drinking it every morning my stomach got a bit more sensitive because of the acidity, as I didn't diluted it with enough water. If you like to dry ACV, mix it with at least 250mls of water to avoid any stomach irritation. At some point I also tried supliment of Vit D3 10000iu +K2Vitamin and it also helped.
I hope, some of the tips will help you.
God bless,
M
THANK YOU FOR YOUR INPUT, IT SOUNDS LIKE YOUR DOING WELL
I wouldn’t take B6 because it increases serotonin, and that’s what most of us are sensitive to. I’m personally unable to drink smoothies and other foods where vitamin B’s have been added. Be careful, things aren’t always simple neurologically and many supplements make the condition worse, especially when you reach a ripe old age and your metabolism is no longer efficient. it’s better to rely on nutritious food.
B6 is essential for nerves before you eliminate make sure not deficient as low B6 contributes to neuropathy.
Yes the best thing is to have tests done first, I found that I have elevated folate in a test aimed at RLS problems specifically, also plenty of magnesium, so my conclusion is that I don’t need these supplements at all as I am likely to get them from the food. I had adequate levels of B12 then. I really get severe RLS symptoms from magnesium, B9, B6 and B12, the latter being a bit problematic as I am mostly vegan. Possibly from others also but I have not been able to establish it with certainty. I don’t think taking supplements is a great way of managing our bodies so I just try and eat what nature gives us (a whole food diet). In my opinion you only really have to worry if you tend to eat junk food.
Oromorph for RLS
Pramipexole for RLS
Operations for RLS 
Rls
