Thoughts please

[AnnMB]

I hope this post is not too long but it's hard to fully explain. I have had severe RLS for 30 years - it started during pregnancy but unfortunately never left and has only worsened over the years. I feel like I have been on every drug with minimal help. I take 0.5 which I went through augmentation with had a long break but am now back on it on a lower dose. I do take gabapentin but that was prescribed for nerve pain. Reading your previous comments I am coming to understand how awful sifrol is which is upsetting since a professor in sleep put me back on it. My post isn't about that though but more so a problem I had with a general anaesthetic but has continued since. As I was coming out of the anaesthetic I had seizure-like symptoms which went on for a considerable time and were not controllable with many medications. At the time we thought it was a reaction to the anaesthetic but the anaesthetist advised it was not the case as it was much too severe and even though I doubted that at the time he proved to be correct as I started waking up during the night with the same type of symptoms. It does not feel like RLS as there is no urge to move my legs etc but it is uncontrollable arm movements and head banging. In some ways I'm grateful that Drs witnessed this otherwise I would think I was going slightly nuts. I had MRI and that was clear. The neurologist is uncertain about the diagnosis and waiting on EEG. He doesn't want me to make any adjustments to medications as it might make things worse however after reading these posts is there any possibility that the sifrol could be causing this - it doesn't feel like augmentation - I have no daytime symptoms to suggest it is. It has become very difficult as I wake in the night with very full seizure-type symptoms and then trying to work is not easy. The neurologist doesn't think it is epilepsy. I do have untreated severe OSA which makes things a bit more complex as well. I would appreciate any thoughts. Thanks

[Joolsg]

mayoclinic.org/drugs-supple... body movements are listed as a common side effect of Mirapex.

Anaesthesia is usually given with an anti nausea drug and the common anti nausea drugs trigger severe RLS. It's why anyone with RLS has to warn surgical teams in advance and ask for RLS safe meds. Zofran is the most common safe option.

In your case, the reaction happened coming out of Anaesthesia but it has continued.

Are you experiencing these seizure type episodes every night?

I fully suspect that it is Mirapex causing the unusual body movement.

I understand the doctors want to investigate further, but I absolutely think it's Mirapex.

You could wait for further tests, or ask for an agreed, scheduled withdrawal from 0.5mg Mirapex now.

Follow the usual advice on here and reduce by half a 0.125mg pill every 2 weeks.

As you have uncontrolled sleep apnoea, you do need to see a sleep doctor to arrange Treatment. Dr Jose Thomas at Gwent Sleep Clinic reports that many of his RLS patients see a vast improvement in their RLS after treatment. A CPAP machine is the most common treatment.

Usually, low dose opioids can help withdrawal symptoms at each Mirapex dose reduction, but your sleep apnoea would be an issue. Deal with that as a priority, then you can discuss reduction of Mirapex. If you have a CPAP machine, then low dose opioids could reduce withdrawal symptoms.

Show the 'side effects' to your medical team. Unusual body movements are set out very clearly as a COMMON side effect.

[AnnMB in reply to Joolsg]

Thank you for your reply. It doesn't happen every night. I've had a few nights in a row and then every couple of nights etc it's hard to pin point a pattern. I really appreciate your advice and have decided to cut down the sifrol. I'm in Melbourne Australia and have found it hard to find many Drs that have a specialty in RLS. I think I might struggle to find someone that will give opoids to help in this process due to my sleep apnea but they are happy to give sleeping pills (not taking them) hard to understand the logic sometimes.

[Joolsg in reply to AnnMB]

As you're in Australia, send a message to Shumbah. I'm sure she can direct you to a doctor who knows a little more about RLS.

[Hidden in reply to AnnMB]

If you want to private message me your email address, I can send you a list of RLS professionals in Victoria.

[AnnMB in reply to Hidden]

Thanks, I have sent you my email

[Joolsg]

pubmed.ncbi.nlm.nih.gov/303...

I've also found reports that gabapentin can cause myoclonus ( the uncontroable jerks you have been experiencing).

So it could be either the Mirapex, or the gabapentin, or both.

If you decide to taper off these meds, do it one at a time to see if the jerking stops.

It may mean that in the future you will have to consider other treatments for RLS.

Iron infusions to raise your serum ferritin above 100, preferably 200 might really help your RLS and enable you to be med free.

[AnnMB in reply to Joolsg]

That is really interesting about gabapentin - I have decided to reduce the sifrol first and if that doesn't work I will reduce the gabapentin. I have had iron infusions with little help but maybe these medications are hindering that. Thank you so much for your help.

[Munroist]

As you were on both Sifrol and gabapentin before the GA without any of these effects it’s worth considering that neither of them is the cause. People occasionally report here that RLS suddenly starts or gets worse after an operation with GA so it can trigger a change in the body. Coming off Sifrol may not be a bad thing and may help rule that out or in, but the normal advice is to use gabapentin to manage withdrawal so coming off both might be quite difficult.

[AnnMB in reply to Munroist]

Thank you for your reply - you make a good point about being on the medications prior. I think I will have to get off one medication at a time

[Eryl]

While medications can dampen down the syptoms of RLS they don't adress the causes which is most often inflammation of the nerves caused by sugar and refined starch (mostly wheat based foods) in the diet though it can also be caused by high cortisol levels or allergies. This systemic inflammation is also the main cause of OSA.

Change yor diet to lower your systemic inflammation and you'll tackle both problems without medication.

[AnnMB in reply to Eryl]

Thanks for your reply and I do agree with you, especially in regards to inflammation and sugar. I guess I’m just not sure if it's the full story because in the last year, I have done a lot of work on my diet and lost a lot of weight and it hasn't made any difference at all, especially the OSA which is why I have done it.

[Eryl in reply to AnnMB]

As I said, cortisol levels and subclinical allergies can also cause inflammation as can refined seed oils. I may have found that pisistachio nuts an affect my sinuses (i already knew that peanuts did).