Hello again, I need help from all the... - Restless Legs Syn...

Restless Legs Syndrome

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Hello again, I need help from all the knowledgeable experts here please.

wairoa36 profile image
3 Replies

I have withdrawn from 0.75 mg Pramipexole at bedtime once daily and 100/25 Sinemet once at bedtime starting August 2019. You all know how miserable that was ..

I then went onto Gabapentin , increasing to 1200 mg in divided doses at bedtime, with Targin 25 mg at the same time. I have struggled with this till now, waiting for some sleep to come my way. It doesn’t.

It was said here that Targin can cause sleeplessness so I have cut back to Targin 15 mg with no help. The gaba makes me extremely dozy in daytime so since it was useless at night for sleep , I have cut that to 900 mg .

I get virtually no sleep till about 4 or 5 am and then wake up with kicking legs again till I get up again, about 6 or 7 am.

My GP is trying to help but knows nothing.

He wants me to go back on DAs . I will not.

I work on meditation , I walk a lot, and I have tried many diet options, advised here. Generally , the most benefit seems to be from very small light meals with no processed foods and very low in carbohydrates, high in fruits and veggies

Can anyone advise me where to turn now, please?

Many thanks,

Wairoa36 / Picol

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I suggest you write to Dr Buckfuhrer who is a very well reputed RLS expert.

You can write to him by following the link below and clicking on the yellow email button on the left side.

Write more or less what you have written here and he will respond.

rlshelp.org/

In your case your iron levels may be a significant factor, so I hope you have had your ferritin level checked.

Orangehorses profile image
Orangehorses

I am the other way. I came off gabapentin and started on pramipexole. Gabapentin just made me feel drunk. I take paracetamol as that helps me sleep. Your Dr should be able to get you sorted. There are other medications you can try. Do you have a bath before bed as that can help and do you leave your window slightly open to ventilate your room. That definitely makes it easier to sleep. Go back to your Dr and ask for something to be done. I suffered for years before I went due to no help from a previous doctor. When you suffer a long time it can cause depression. I now can't believe the help I got. Like I have a new lease of life

If you're in a position to see a sleep specialist, that would be my recommendation. It's just a case of trying the next med or combination of meds.

It sounds like the Targin might be causing insomnia. Both Targin and Tramadol cause insomnia for me. Can you try stopping that and trying the gabapentin on its own. I take pregabalin 250 to 300mg and that works for me most of the time. I'm interested in trying buprenorphine, a low dose opioid but waiting on an appointment with my doc.0

It sounds like you already do a lot of beneficial things. As far as supplements go, I find magnesium helps a little and D3. Also people on here suggest B12 (in morning) and folic acid.

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