I’d be interested if this works for anyone else

[LoisTonya]

I read that histamine intolerance can cause restless legs so I looked up foods with much histamine. I’ve cut out bananas, avocado, yoghourt, citrus fruits, tomatoes and spinach. After a few days my RLS disappeared. I am still taking my dopamine agonists but have not increased the dose as I was planning to do. I’m now thinking of reducing the dose

[Hidden]

There is some logic in what you've found. It has been found that inflammation is a factor in RLS, not necessarily a direct cause but a factor.

Histamine is involved in inflammation so if you reduce your ingestion of histamine it may reduce inflammation and hence help with your RLS.

In fact it has been suggested that an "anti-inflammatory" (mediterranean) diet can help with RLS, so it may be worthwhile you looking into that.

If you're taking pramipexole and your symptoms have beeen getting worse you should never be tempted to increase the dose. This could result in augmentation.

If you decide to reduce the dose of pramipexole, please do this very slowly and in small steps. Reducing pramipexole can lead to withdrawal effects and the faster you reduce the dose, the more severe the withdrawals will be,

If you withdraw too fast, then as part of withdrawal effects, your symptoms will temporarily get worse and you may then think the diet doesn't work and increase the dose again.

If the diet definitely doesn't work and you still want to reduce the pramipexole, you can switch to an alternative RLS medicine, but you must still reduce the pramipexole slowly.

[LoisTonya in reply to Hidden]

Thank you. This is helpful. I take 2 Pramipexole .88. When it is no longer working well I switch to Ropinerole for a few days. The doctor is happy for me to keep experimenting. Unfortunately I had a TIA a few days ago and my brain is not functioning too well at the moment

[Hidden in reply to LoisTonya]

I am so sorry to hear about your TIA and hope you recover soon. This is probably not a good time, but it appears to me that your doctor appears ignorant about RLS snd how to treat it.

Loss of efficacy and augmentation are known complications of using a dopamine agonist, (DA). This is true for ALL of them.

Switching from pramipexole to ropinirole seems pointless, it's just another DA. Furthermore if you don't switch to an equivalent dose then this could cause problems. If it's too little then you could have withdrawal symptoms, if too much, you increase the risk of augmentation.

It's documented that if you switch from pramipexole to another DA, it's better to switch to rotigotine NOT ropinirole.

To switch back to pramipexole after only a few days is simply bizarre! Pramipexole is the worst risk of complications.

A better option entirely is to ADD an alternative RLS medication an alpha 2 delta ligand. Either gabapentin or pregabalin. Once that has become effective you could then reduce the pramipexole.

I have been a member of this forum for nearly two years and it's sad to see how many doctors, including specialists appear to be so ignorant about the treatment of RLS especially in prescribing DAs without any knowledge of the harm these drugs can cause. I actually get angry when I think about how my RLS has been mismanaged by several GPs and 3 neurologists.

You can refer your doctor to the National Institute for Health and Care Excellence (NICE) guidelines for the management of RLS which clearkly state that your doctor should have warned you about loss of efficacy and augmentation. I imagine they have never even heard of sugmentation, a condition which has caused so much suffering for so many people.

They also indicate that gabapentin or or pregabalin are an alternative.

I can say that if your doctor ignores the NICE guidance and you come to any harm, then they could be commiting medical negligence.

here's a link

cks.nice.org.uk/restless-le...

here's a link to an article that has a section on dealing with augmentation. Loss of efficacy which is what you experience leads to augmentation.

uptodate.com/contents/treat...

Finally, as identified in both the links, the first thing your doctor should do is to check your ferritin level and if they do and it's below 100ug/L then you should start taking an iron supplement. You don't neef a prescription for this if you're not anaemic. If your doctor.just says it's "normal", this is further ignorance, you need to know the number.

Please don't tell your dr they're ignorant, this setves no purpose, be diplomatic, but assertive.

I realise you may have other problems to deal with at the moment but in time, you could do with better management of your RLS.

[Jumpybean]

That’s very interesting. I eat all of those regularly!

[Gmc54]

Interesting, thank you.

[Muftah36]

Hello, your discovery is very interesting. I have been on a modified antiflammafory diet For over a year now and while it has definitely made a difference, I still have problems several nights a week. Some of the foods that you mentioned I do eat like bananas, dried fruit , broccoli and some others . I will eliminate these and see if things improve that is if I can find anything to eat after I have eliminated so much . I’ll post Again next week With my progress or the lack of it . Wish me luck

[LoisTonya in reply to Muftah36]

Broccoli is fine. All vegetables are OK except spinach and tomatoes. Last night I reduced my pramipexole by 1/4 of a tablet. Slight RLS in the night but not bad. I’ll stick with this reduction for at least a week before considering a further reduction

[Muftah36]

My advice , having augmented on Ropinarole and having an extremely difficult withdrawal is to go very slowly . Anything along the way that helps with that is great . Good luck .

[LoisTonya in reply to Muftah36]

I’ve spoken to GP this morning and she agrees to me gradually reducing my Pramipexole

[SophShaw in reply to Muftah36]

Have you had any luck with the change in diet?

[LoisTonya in reply to SophShaw]

Yes, cutting out foods with histamine has worked wonders. I’ve reduced my Pramipexole by a quarter now. In a couple of weeks I’ll cut it further

[Hidden]

Thank you for this information. I have also found that these specific foods exacerbate my RLS. I do eat a little yogurt and limited tomatoes. Bananas and avocados ALWAYS trigger RLS in me.