RLS and vitamin B1

[Twinsister]

My GP doctor is sending me to a neurologist, because the pramipexole I have been taking for RLS isn’t working anymore at a low-dose. I have heard that vitamin B1 is helpful for RLS. Does anybody know if this is true?

[Hidden]

Loss of efficacy is a common problem with pramipexole. It's good that your GP's not tempted to increase the dose as this is likely to lead to a severe complication called "augmentation".

I can understand that your GP wants to refer you to a neurologist as they may not be very confident in dealing with RLS.

This is a bit of a shame since a GP can deal with this if they have the confidence and knowledge.

In addition it usually takes a long time to get to see a neurologist even in normal times. Also, even neurologists aren't equally knowledgeable about how to deal with RLS.

The recommended action to deal with loss of efficacy and augmentation when taking a dopamine agonist (DA) such as pramipexole, (ropinirole or rotigotine), is to withdraw from the DA and replace it with either an alpha 2 delta ligand or an opioid. GPs won't generally prescribe an opiod for RLS, but they can prescribe a ligand.

In addition to switching to another medication there are two other things your GP can do.

The most signficant is to check if you have any iron deficiency. Tests for serum iron, transferring, ferritin and haemoglobin are needed. Whether your haemoglobin is normal or not, if your ferritin is less than 75ug/L you may benefit from starting an oral iron supplement.

Low ferritin is a major factor in RLS and raising it, in some cases can even reduce the need for medication.

Vitamins B12 and D can be a factor in RLS if you have any deficiency in them.

The second thing your doctor can do is to look at any medications you're taking which may be making your RLS worse. The main culprits are antidepressants and antihistamines, but there are others.

Some people find that their diet can affect their RLS.

Particularly added sugar, simple carbohydrates, alcohol and caffeine can make RLS worse.

You could keep a food diary to record what you eat and what your symptoms are like each day.

As you mention GP, assuming you live in the UK, you may find the following link helpful. This is information about the management of RLS designed specifically for GPS and published by the National Institute fior Health and Care Excellence (NICE). You can refer your GP to this site, they will have heard of NICE.

It mentions most of what I've written, loss of efficacy and augmentation, alternative meds i.e. alpha 2 delta ligands and so on, and more it's very detailed and your GP should find it helpful.

cks.nice.org.uk/topics/rest...

[Twinsister in reply to Hidden]

Thank you so much for all your information. I have started no drinking coffee after 12 noon, and I am taking some nutritional yeast, B-complex and magnesium. I have been on a psychiatric medication for over 20 years. I have an appointment with a neurologist in three weeks and three days!! I hope the neurologist can help me. I’ve never seen a neurologist for RLS before.

[Joolsg in reply to Twinsister]

What’s the psychiatric med you’re taking? When did the RLS start? Many people first suffer from RLS after starting anti depressants.

[Twinsister in reply to Joolsg]

I have restless legs. My identical twin sister has restless legs. My mother had restless legs her whole life. I don’t think that it is my psychiatric medication, at least I hope it’s not. I think it’s more of the hereditary thing.

[Joolsg in reply to Twinsister]

Thanks for clarifying. All anti depressants ( SSRI &SNRI) will make RLS worse except Trazodone or Wellbutrin. That’s why I asked. The benzodiazepines for anxiety actually help RLS.

[Twinsister in reply to Joolsg]

I take Amitryptiline and Trifluoperazine and occasionally hydroxyzine

[Joolsg in reply to Twinsister]

Amitriptyline worsens RLS in 99% of RLS patients , hydroxyzine is a sedating anti histamine so will also worsen RLS & trifluoperazine is an anti psychotic not generally used for anxiety any more.

I suggest you see your doctor and discuss alternatives which are RLS friendly.

Trazodone & Wellbutrin are safe anti depressants, diazepam or clonazepam are better anxiety meds & pregabalin is also used for anxiety & helps treat RLS..

[Sshifflett2 in reply to Hidden]

Your right my neurologist doubled my dose than increased 4x a day i went from 12.5 2 x a day to .25 x 4a day. Ughh some Drs seem not to care.I see my sleep Dr tomorrow she had talked about klonipin for rls.and when dr prescribed mr tizadine to sleep it made rls worse.. The problem is drs dont understand how bad rls is

[Henshaw241241]

We 23rd

[Henshaw241241]

Hi yes I was on pramipexole didn't work then I went in augmentation very hard then I went to see a neurologist then she Put me on pregabalin 75 mm 1 at 6 pm 1 at 9pm very good the best nights sleep for years the best thing ever happened All the best Take CARE Henshaw 241241☺️😊

[Ballybofey26]

Hi, I was on Pramipexike a few years , it stopped working, I doubled my side, stopped working, I reduced my side etc till it was useless. The symptoms had gotten extremely worse in just a few years. Apparently it's called augmentation when the medication worsens the condition. I had RLS nearly 24/7. It was crazzie. i was waking up every half hour with restless feet, legs, arms, fingers....it was like an electric shock going through my body and i had restlessness and pins and needles during the daytime. I fired my doctor and came off the medication COLD TURKEY. It wasn't easy but I could not continue the way I was and I had lost faith in the doctors. Sure one of my close friends is a doctor and she has restless legs and no solution! She does not dare to take the medication . So cold turkey I think it was first two weeks of September, with help of an acupuncturist for support. I immediately started taking vitamin complex supplements , plus maximum doses of Vit D and magnesium and calcium; healthy consistent diet with green Veg, coloured veg, fruit, nuts ,seeds., yoghurt. Daily exercise. I stopped sugar, caffeine , gluten for a couple of months and then reintroduce them one by one. As long as I eat them in moderation, they do not cause me problems. If i overeat these, then I'm sure to have problems. RESULTS: I have not had chronic RLS since early December. I sleep for hours every night. I wake up every 2 to 3 hours with a little restlessness, I get up, go to bathroom, drink water, and back to bed and fall asleep immediately. I don't have RLS at all during the day, not in the evening when I watch tv. I don't know why the chronic stuff has left me, I don't know if it's the Vit D or the magnesium or whatever. I seem to have found something that works for me so I just keep doing it. I'm not dropping anything. I have not felt so good in over a year. I take no medication at all. My gratitude to the website An Absolute Cure for RLS, I followed his advice, more or less. But he gave me hope. The acupuncturist was terrific. Certainly helped me adjust my lifestyle. I did 10 sessions but have not needed to go there since early December. I know it's only been a month. But if a month is possible, then so is another, and another.... I wish you the best of health. 🤗

[Twinsister in reply to Ballybofey26]

Thank you! I was going through with drawls all day yesterday from the pramipexole. I am already doing keto so I don’t eat sugar, I have cut back my coffee to two cups in the morning. I am going to continue with the nutritional yeast B-complex vitamins vitamin D magnesium and calcium as you did. I will have to adjust my diet to eating more healthy. But I actually feel good this morning, I think it’s because of cutting back on my pramipexole. I have had a lot of forgetfulness and an inability to process my thoughts correctly. I can’t think of the right thing when I need to. I suspect it is the pramipexole. I have been afraid that I may be heading towards dementia. My psychiatric medication is also a factor but I have been getting a lot worse lately In my ability to think correctly, and I am hoping that this will improve with getting off the pramipexole. Getting off my psychiatric medication could be near to impossible for me. I have been on it for over 20 years, but it has worked for me and I am stable and I lead a normal life. I don’t want to rock the boat.

[vandermeierenstijn]

Hallo, i used to use pramipexole for years, then added gabapentin, increased this to 1500mg a day, and now, five years later I just switched to pregabaline one 75mg tablet twice a day. I admit never have found or received medication that could made me state being fully helped. I am believed though of the fact that sticking with one medication for years on years diminishes effect. It took me though 6 months before the neurologist wanted to give me the new meds. I hope I feel change in a week or two. For me the best is taking long walks but one has to work and provide for the family...feel free to ask any questions. Mind that I never suffered whither building up and down meds. Success Stijn