Read my story in my profile. I will add any news/changes in my condition(s) as and when they arise.
Currently I am confronting Stage 3, Prostate Cancer. Radiotherapy treatment for a month, roughly halfway through at the time of writing.
RLS & Dissociative Seizures - Restless Legs Syn...
RLS & Dissociative Seizures
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27 Replies
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Welcome to the forum. You will find lots of help, support and understanding here.
From my research Dissociative Seizures are not related to RLS. The clonazepam and pregabalin might have helped your seizures but not the ropinirole.
The ropinirole helps your RLS. However are you aware that up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
Be very aware of the signs of augmentation which are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
If or when this happens post back here for advice.
How much ropinirole are you taking and how much pregabalin?
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel.Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
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. Keep a food diary to see if any food make your RLS worse.
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.
in reply to SueJohnson
Thank you for such a speedy reply.
Is your research published? If so, would you be kind enough to provide a link, or email a copy.
Please forgive my inquisitiveness, but are you UK or USA based? You refer to The Mayo Clinic in the first instance, rather than a UK NHS institution.
“ . . . it can be hell to come off it and the longer you are on it, the harder it will be to come off it . . . “, sounds like you’re speaking from personal experience.
I will reply more fully as I get to know you better. Please don’t misconstrue my reticence for rudeness. My own academic background has left an indelible mark!
SueJohnson in reply to
I am not a researcher. When I said from my research, I simply mean I researched it.
I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
I am in the US but have been on this forum for some time. The Mayo Algorithm is considered the bible for RLS.
As far as "it can be hell to come off it ..." if you had been on this forum and read the many, many others stories of their experiences you would understand this.
As far as Dissociative Seizures being related to RLS, let me turn it around and as you why you think they were as I haven't found anything that says they are?
And no, of course I don't think you are being rude.
in reply to SueJohnson
I was diagnosed by a Consultant Neurologist with FND, in 2022. Because my RLS was so severe (whole body), he opined that such a stressful experience could cause Dissociative Seizures in the light of my FND diagnosis. I have included a NHS link about FND (Functional Neurological Disorder).
nhsinform.scot/illnesses-an...
SueJohnson in reply to
When I click that link I get "Not allowed" However I was able to look up other articles on it. Not a good thing to have.
So it is not the RLS per se that is causing the Dissociative Seizures, it is the stress you were having because of it. That makes sense. And sense you have gotten the RLS under control, the stress has gone away along with the Dissociative Seizures .
Joolsg in reply to
Can I ask which consultant you saw?Whole body RLS is common for all of those suffering augmentation. Augmentation is the drug induced worsening of RLS caused by Ropinirole.
I had it in 2016. The RLS had moved to my arms, hands, back, face.
I experienced violent leg jerks.
I came on this forumnd the members pointed out I was experiencing augmentation.
Please do read up about it and look through Dr Berkowski's website.
The pregabalin and clonazepam will only control the severe RLS for a short time. The augmentation WILL break through again at some point.
When your cancer treatment is finished, please come back and we can show you the up to date research on the scale of augmentation.
Most UK neurologists are not knowledge about RLS or augmentation.
Sad, tragic, but true.
Typicallygaslit in reply to
I’m very sceptical about FND, it’s a fancy word for hysteria. I went to see a neurologist about RLS but the guy I was allowed to see was not even a fully fledged neurologist. He thought I was just being anxious about my health, ignored the RLS, and diagnosed me with FND even though I don’t have any of the physical signs for it. I was too tired and confused by all the silly jargon about misfiring neurons and the body as a computer to understand what was going on. So just a word of warning to be careful about this diagnosis and focus on getting the RLS under control.
in reply to Typicallygaslit
A link that might broaden your thinking.
Typicallygaslit in reply to
Yes I have seen all that and I think it’s ridiculous. But if you like to believe in it, by all means. I was just trying to help. No need to be spiteful.
in reply to SueJohnson
A quick reply to your question regarding Ropinirole & Pregabalin dosages.
Ropinirole: 1.5mg
Pregabalin: 200mg
These are taken together with Clonazepam: 0.5mg, roughly two hours before I retire. My RLS & Seizures, are, as a result, well-controlled. I have not experienced a seizure since May, 2022.
SueJohnson in reply to
That's great!
in reply to SueJohnson
Thank you.
Another five days of Radiotherapy beckons, so no more comments or replies until next weekend. Many thanks to all for welcoming me so warmly.
While associations have been reported between right temporal lobe epilepsy in particular and RLS, I've missed links between dissociative seizures and RLS?According to Epilepsy Action the main treatment for dissociative seizures is talking therapy, and "epilepsy medicines will not stop dissociative seizures, so your doctor will usually only recommend them if you are having epileptic seizures as well....If you are already taking epilepsy medicine, and have now been diagnosed with dissociative seizures instead of epilepsy, your doctor will tell you how to safely reduce and stop your epilepsy medicine."
So there's a question of what each of the combination of three drugs has specifically been prescribed to treat. Sue has warned about the prospective issues with ropinirole, and given additional info about RLS, including to the Mayo Algorithm where gabapentin and pregabalin are given as first line treatment for RLS.
But putting that to one side for a moment, four years ago I started treatment for stage 2 prostate cancer which concluded with 20 sessions of radiotherapy. I am pleased to say that this worked for me, and 3 years later (pending the results from my latest six-monthly blood test) I am in remission. I hope that your own treatment is as effective!
in reply to ChrisColumbus
Thank you, too, for your speedy reply.
Much of what I wrote to Sue, applies equally to your good-self.
I have not yet read the Mayo Clinic paper. As you will know, one's weekends are a precious time of rest & peaceful pottering, with not a Linear Accelerator in sight!
Your kind words of encouragement are much appreciated. I am being treated for Stage 3, PC, with cribriform pattern.
ChrisColumbus in reply to
BTW, the reason that Sue (US) and I (UK) have referenced the Mayo Algorithm is because the UK medical establishment is - in almost all areas - well behind the curve of RLS research (and indeed largely distrusting of research done outside the UK). UK doctors are not taught about RLS, and even very few UK neurologists are really knowledgeable.
NICE guidelines have only just been updated to recognise issues with dopamine agonists (DAs), and while they do say that the first action should be to check serum ferritin levels, many (most?) doctors - and the NHS as a whole - have for whatever reason not caught up with these points.
And while suggesting that there are problems with DAs and also referencing alpha-2-delta-ligands, NICE fails to give detailed info on the use of the latter for RLS, with the result that doctors assume that the quantities and timing of doses is as for neuropathy. Which it isn't.
So hopefully when your RT is successfully completed you'll have more time to delight in the detail of the Mayo Algorithm!
Best wishes
Hi ChrisColumbus, I am happy for you that your treatments have been a success, congratulations! You are a HUGE contributor to this valuable forum. A voice of reason as many are on here. 👏Teresa
I am sorry to hear about the prostate cancer & hope the radiotherapy works.If you have been on Ropinirole for a long time, you will have 'relapses', except they're not relapses. Ropinirole worsens RLS over time, increasing the severity. It is why experts will no longer prescribe dopamine agonists.
You may find the dissociative seizures are a side effect of Ropinirole. Many people report falling asleep suddenly.
Or they may be caused by severe sleep disruption because Ropinirole is not controlling the RLS.
jcsm.aasm.org/doi/full/10.5...
ncbi.nlm.nih.gov/pmc/articl...
Do be very wary of Ropinirole and when your radiotherapy is finished, consider getting off it completely.
Dopamine agonists are dangerous drugs. So many people have suffered Impulse Control Disorder, completely out of character. Hundreds of successful cases have now been brought against doctors for failure to warn about this common side effect/complication.
I have not found dissociative seizures are a side effect of Ropinirole. Where did you see this?
I don't think they are. I said that they MAY be a side effect, because there are reports of patients suddenly falling asleep. So it's possible the Ropinirole is causing strange brain misfirings.
Turns out the Dissociative Seizures were a result of the stress he was having because of his severe RLS.
Not surprising. Especially as the RLS will be severe on Ropinirole.
As I understand it he wasn't prescribed the ropinirole until after he was in the hospital from the Dissociative Seizures at which time he was prescribed ropinirole + pregabalin + clonazepam and now his RLS is under control.
in reply to Joolsg
Thank you for your kind words, regarding my Prostate Cancer.
I’m sending you a paper about Ropinirole. It’s a long read, but it may contribute to your thinking.
journals.sagepub.com/doi/fu...
Joolsg in reply to
That paper is 2009. Before the scale of ICD and augmentation became apparent.The up to date research and treatment on dopamine agonists, and augmentation, is now in the Mayo Clinic Algorithm.
The new American Sleep Academy guidelines, out soon, will recommend that dopamine agonists are not prescribed, except in end of life scenarios, where the short term relief outweighs the inevitable longer term suffering.
A very useful website is run by Dr Andy Berkowski, a co writer of the Mayo Clinic Algorithm and the new ASA guidelines.
SueJohnson in reply to
Have you read the Mayo Algorithm?
Joolsg in reply to
I apologise if I have misunderstood the timeline of your treatment.I assumed you had been on Ropinirole for quite some time. But, apparently, you were only prescribed it very recently.
If that is the case, did the neurologist warn you about augmentation and Impulse Control Disorder? I ask because so many members experience ICD and there have now been hundreds of successful cases against doctors in the UK for failure to warn.
Ropinirole is no longer first line treatment amongst world experts for RLS. Those of us who have experienced Augmentation understand why.
If you have only been on Ropinirole for a short time, now would be a good time to reduce it, and increase the pregabalin.
And follow SueJohnson advice to get your serum ferritin levels above 100ųg, preferably 200ųg/L.
That will control your RLS and avoid the inevitable Augmentation that WILL happen at some point in the future.
I have ropinerole augmentation, and as Sue said, it's hell. Only after communication with Sue did I feel strong enough and supported enough to speak with my doctor and be very firm about coming off it and trying pregabalin on its own, as I've only taking it previously along side ropinerole. I have just begun reducing my dose and am praying that over time I will have some relief.
Sorry that you are battling Prostate Cancer, I am currently fundraising for this cause by walking 100 miles in May. I've already walked 62 and raised £250. It doesn't sound like much but there are lots of people doing it so hopefully a significant amount will be raised for research.
Wishing you all the best
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