help with restless legs meds.

[Bevash]

hi there, I have had restless legs for many years and have been down the track of using pramipexole and eventually weaning off it after augmenting. I have since been taking codiene 15mg x 2 a day along with gabapentin (have recently weaned down to 200 from 900). Iron tabs x 2 every 2nd day along with vit c. Plus a homeopathic spray under the tongue.

For some time I have been waking about 4am and having to take another dose of codiene & the spray.

I also have severe asthma & COPD (along with a few more health issues) . My breathing has deteriated a lot since having Covid back in March 2022. I am at the stage of having to use a walker inside my house and are having trouble getting to the bathroom and back before having to sit for 10mins to get my breath back. Needless to say I can’t do very much, social outings are a no no, and exercise is very difficult.

I am presently researching into what could be causing the deteriation and have discovered that codiene and gabapentin are not recommended if you have a respiratory disease. I have a new dr and presently visit him on a weekly basis to try and get answers. I have had chest X-rays. A chest CT scan , numerous blood tests, and trialling new meds. I find the present meds taken for my RLS is working but if causing my breathing issues will need to be stopped ( gabapentin & codiene) . Has anyone got any suggestions as to what I could use as an alternative.

TIA. regards Bev.

[SueJohnson]

Another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[Bevash in reply to SueJohnson]

Thanks Sue. I will have look into that. This forum is amazing.

[Hidden]

Sorry to hear about your breathing issues. That sounds very limiting.

Your doctor really should have been the one to advise you of the risks associated with taking opioids(codeine) and gabapentinoids (gabapentin) simultaneously if you have any significant respiratory issues.

900mg isn't an especially high dose of gabapentin. Did you ever try a higher dose of gabapentin (without taking codeine)?

An alternative to gabapentin is pregabalin - although the same class of medications, some people find that one works / is tolerated better than the other.

I'd like to say check any interactions with your doctor (especially in view of the fact that you're taking new medications) but given your experience to-date, perhaps your pharmacist may be more helpful....

[Eryl]

I found that when I chanbged my diet to reduce my systemic inflammation to tackle my rls that my breathing also improved. Google foods that 'cause inflammation'. Changing my diet has eliminated rls altogether without any meds

[Bevash in reply to Eryl]

thanks Eryl. That’s fantastic news, I am looking into everything possible at the moment including diet. As I also have reflux/GERD there are a lot of foods I cannot eat so my listing of what I can have is getting very limited. I am looking at eliminating dairy so that narrows the list even more.

[Eryl in reply to Bevash]

If dairy is a problem you migjt like tobtry goats milk? Many people find thatbthey can tolrrste goays milk althouh they have peoblems with cows milk and modern goats milk is nowhere near as ' goaty' as it was on those Spnish packags tours years agk.

[Bevash in reply to Eryl]

I dont have a lot of cows milk and could easily cut that out. It is the cheese, eggs, & yoghurts etc I would have trouble eliminating. Will just try all the immflamitory foods first. Or maybe if I start with lettuce leaves and ice cubes then build from there. This getting older is not for sissy’s.

[Graham3196 in reply to Bevash]

I am not sure but I think the usual problem with milk is lactose intolerance in which case the eggs should be safe for you. I cant tolerate milk but I eat lots of eggs as a good source of protein. With a bit of practice avoiding milk is pretty easy.

I can eat aged cheese and soft cheese like camembert. They are said to be very low on lactose

[Bevash in reply to Graham3196]

thanks graham. I will tak3 your. Comments on board.

[Eryl in reply to Graham3196]

Some people (like me) have a problem with the a1 casein in cows milk which happens to fit the morphinre receptors and causes a foggy head or digestive problems if they have too much. That's why I'm ok with goats milk.

[jilk]

google dr berg's u tube [vit b1 the great immitator of other illnesses, ] this vitamin has something to do with every part if the body also mentions restless legs not seen on this forum as far as i know

[Bevash in reply to jilk]

thanks Jill for this info.

[Hidden]

Hi Bevash, I too have found my allergy induced asthma (mostly mold and pet dander) was greatly exacerbated by Covid. AND, it seems my Albuterol inhaler triggers RLS within 5 minutes but I need to test that out more.

Anyways, do you take your iron tabs at night? You should. Iron Bisglycinate relieves my RLS in one hour, but only for one night so I must take it every night. So in a perfect world I would like to see you taking the iron, 1 codeine tablet, and 200mg of Gabapentin and getting complete relief. And if you wake up at 4am take another iron tab instead of codeine. The iron should be taken on an empty stomach and away from your other meds.

Lastly, you should Google COPD and berberine and see what you think. Berberine has become the new “it” drug. They’re looking at it for everything from Parkinson’s to cancer to high cholesterol, type 2 diabetes and. COPD. I think for COPD you would need to find a highly bioavailable form of it and only take it in the morning since it runs the risk of making RLS symptoms worse in the short-run since it is a dopamine antagonist. It has a short half life so by evening it should not make your RLS worse. In the long run I believe it could actually help our RLS by up-regulating our D3 receptors. Always discuss with your doctor.

In the vast majority of cases, these post-Covid symptoms subside after a year. I believe you and I will fall in that category. 🌈

[Bevash in reply to Hidden]

hi salemlake. Thank you so much for this information.,I will definetly google berberine. I have an appointment with my dr this coming Tuesday so will discuss it with him. Guess what I will be doing tomorrow. I’m in nz and lt is now 10pm so I won’t start googling .(although I would like to. ) once again many thanks.

Regards Bev

[SueJohnson in reply to Bevash]

Happy Thanksgiving.

[Bevash in reply to SueJohnson]

thankyou. And back at you.

[Bevash in reply to Hidden]

I forgot to add. I take my iron tabs in the evening. I take 2 every second night along with vitamin c ( as advised byseveral people on this forum) it does make a difference to my iron readings as opposed to 1 tab every night.