Scaryme

[Scaryme]

I have had RLS for 5 years. Does anyone else have digestive problems with this condition ?On oregabslin100 mg at night and 125 mg mornings This dose has reduced migraines but now digestive problems

[amrob123]

Pregabalin can slow gut motility. It's also associated with gastrointestinal side effects such as constipation, bloating, and reduced gastric emptying,

[ChrisColumbus]

Are you taking pregabalin for RLS, chronic migraines, or both? And how long have you been taking it?

For RLS, effective pregabalin doses are usually in the range of 150 to a maximum of 450 mg daily taken in the evening (and you would not take it in the morning). While I've found mention of it being used to treat migraines, I've not yet found details of recommended doses or timings.

In relation to your issue, unfortunately common side effects of pregabalin listed by NICE include constipation, diarrhoea, gastrointestinal disorders, nausea and vomiting.

BTW, a 2021 study concluded that "the occurrence of RLS in migraine patients was significantly related to vitamin D deficiency".

pmc.ncbi.nlm.nih.gov/articl...

Hopefully someone else will be along before long to give you the benefit of their experience and advice.

[SurvivorD in reply to ChrisColumbus]

instagram.com/reel/DFf-kg_K...

[ChrisColumbus in reply to SurvivorD]

Sorry: I've seen that you've shared this elsewhere but don't know what it is, as I no longer use Instagram

[SueJohnson]

Did you mean pregabalin not oregabslin?

[Scaryme in reply to SueJohnson]

yes. Sorry. Pregabalin.

[SueJohnson in reply to Scaryme]

You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.

Multiply the pregabalin amount by 6 to get the correct dose. 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. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Scaryme in reply to SueJohnson]

Sue Thank you that is all very helpful. My. Ferritin level has been well above 100 but I will take your suggestions when I see my GP and NHS neurologist in March and ask for the other measures you mention to be requested . The digestive symptoms are the most troublesome. Would it be safe to take Gabiscon ?

My RLS seems to be more to do with nerve pains and headaches less to do with jerking legs at night. The neurology at Kings says it’s a very painful condition. He did suggest Dopamine antagonists and gabapentin enscarbil ? Luckily I had read research findings on the former and you can’t get the latter on the NHS

Thank you so so much

Scaryme

[SueJohnson in reply to Scaryme]

If you take Gaviscon, be sure to take Gaviscon Advance. Take it 30 minutes after eating and . 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin.or antihistamines.

Gabapentin will help with nerve pain. Jerking legs is PLMD which is treated the same way as RLS. Do you have an urge to move your legs? RLS is painful for some but not all. Nerve pain is a separate condition.

[Islay9]

I have developed gut issues mid last year. Roughly coinciding with the start of gabapentin and then moved to pregabalin. I don’t know if there is a link.

Food intolerances and getting to the point of being worried to eat anything led me to a gut specialist therapist who works holistically.

She suggests leaky gut syndrome so we are working on healing my gut first.

I have just started this new regime but will be posting more details if successful in case it might help others.

It has involved cutting out the strong tea I’ve been drinking (despite it being decaf) upping electrolytes, also going gluten free, sugar free etc (as well as dairy free which I already was due to the intolerances) and taking some supplements.

I hope then I will be able to reduce the huge amount of pregab that I’m taking.

[feetgrind]

I also have IBS but I don't think it is related to my RLS. I follow a Low FODMAP diet to mitigate the symptoms of this.