Hello all, I have recently been started on pramipexole and it is working in terms of greatly reducing my RLS and PLM symptoms, attacks were lasting up to six hours with violent jerks in three limbs. The problem is my husband can’t wake me when it kicks in, I do take other meds at night as well. Has anyone had this happen? And was it a long term side affect?
Thanks so much.
Sarah
Hi ManervaThank you so much for your warm welcome and for explaining everything so clearly and in depth especially Re PLM.
My attacks start in my sleep but wake me usually about 80-90 mins into slipping off to sleep. The violent twitching and jerking can then go on through the night regardless of if I am sleeping or a wake, I usually retreat to the sofa if my stretches don’t work and watch tv all night, things usually settle about 4am. In the last ten days my poor husband has been kicked, hit and elbowed in his sleep. I am still getting some twitching in the day time but it’s more of a pulsing in my leg now since starting the tablets.
It doesn’t help my husband is a shift worker so I am often alone when things kick in and I am disabled and mobilise with a stick so I fall a lot and have sudden drops in bp.
This latest bad spell came on post discharge post/from acute pancreatitis. I am only 42 and also have ptsd, sleep apnea, diabetes and cfs/fibromyalgia amount many other issues including my heart. I have been looking at the dietary side of things and have been on iron supplements (doubled) since 2014 plus forceval since leaving hospital in may, I am waiting to hear if my latest bloods taken last week include my ferritin levels.
The reason my husband tried to wake me was I was making noises in my sleep, he was worried for my safety plus I also snore due to sleep apnea, we are resigned to the fact that sleeping arrangements are probably going to have to change and are half way through the forms given by the housing department as we have been waiting for a tenancy for five years.
Sorry for going on.
Thank you so much for reading and have a good evening, I will read through the links now.
Best wishes sarah
Sarah. I'm sorry to hear of your difficulties.
I can understand your husbands concern. My wife makes horrendous noises in her sleep sometimes. I don't think she has apnoea and I tend to think that if she's noisy, she must be breathing.
I worry when she's quiet!
Sleep apnoea can make RLS worse, particularly if your oxygen levels fall. Do you have a CPAP device?
Note that the normal sleep cycle is -
Quickly fall into 4 stages of deep sleep. Stages 3 and 4 of which are slow wave. PLMS may start. Difficult to wake.
Slowly rise out of deep sleep.
Then a short period of "paradoxical" sleep.
This takes about 90mins.
Normally you'd fall back into deep sleep again.
However, it's easy to wake somebody up in the paradoxical stage so your RLS/PLMS will wake you.
It's actually more usual for RLS sufferers to be not be able to get to sleep in the first place.
Unfortunately diabetes can make RLS/PLMS worse, so you need to look out for any signs of peripheral neuropathy.
As regards iron it's not so much the quantity of iron you take, but how well you absorb it. Doubling the amount you take won't necessarily double the amount you absorb. In fact it may actually decrease it. About 98% of iron taken orally is not absorbed.
Hence, first of all, it might be better to take an over the counter iron supplement, rather than a prescription one. A lot of RLS sufferers suggest ferrous bisglycinate (gentle iron).
There are several things you can do to increase the amount you absorb.
Take it in the evening 30 mins before or 2 hours after eating.
Take a vit C tablet or glass of orange at the same time.
Take a double dose, BUT only take it once every other day. NOT every day.
There are good reasons for this, but a bit long winded.
The key is your ferritin level.
Things which make RLS worse include antidepressants, sedating antihistamines, antiemetics, some antacids, some diuretics, some statins, some blood pressure medicines, beta blockes, plus others.
Alcohol, sugar, smoking (tobacco) and caffeine make RLS worse. This is just standard advice.
A low carbohydrate helps some people, but with diabetes you should discuss this with your doctor.
Other diets tried are low oxalate, gluten free, lactose free or anti-inflammatory. It depends on the individual.
A good antioxidant supplement may help e.g. (unbelievably) celery juice.
If you've any deficiency such as magnesium, vitamin B12 or D then supplements in these will help.
I'm afraid that with very severe RLS/PLMS as you have, iron is your best bet and the rest I've mentioned, especialky diet may help, but only a little.
Don't ignore these things, but overall you will need medication and unfortunately this will probably be lifelong. There is no cure.
My opinion is that if you read anything on this site from anybody saying they've found a cure for their RLS, this is simply not true. It may be that they've found something that seems to relieve their symptoms, but that's all. In addition, it seems it often doesn't work for anyone else anyway.
When choosing the best medication there are several things you need to consider. NOTE : I say "choose" because your doctor should discuss ALL the options with you and explain their relative merits and drawbacks. They often don't and this is unethical.
The first thing to consider is how effective the drug will be.
The second is what are the side effects.
The third is how effective will it remain in the long term.
The fourth is does it have any major complications.
The last is, if you have to stop taking it, how easy is it to withdraw.
Obviously if the drawbacks, (side effects etc) outweigh the benefit (effectiveness) of any drug, then it's not a good choice.
There are three main classes of drugs that can directly address RLS/PLM. Two are "first line" treatments, i.e the first to be tried. The third is usually considered to be "second line", to be used when the first have failed.
The second line drugs are opioids. These are strong opioids. Sometimes weak opioids are used, intermittently, alongside first line drugs, if pain is a feature. These weak opioids are of little value long term.
The two first line drugs for RLS/PLM are the alpha 2 delta ligands (ligs) and dopamine agonists (DAs).
Ligs includes pregabalin or gabapentin, DAs include pramipexole, ropinirole or rotigotine.
Effectiveness, both have been demonstrated by clinical trials to be more or less equally effective. Neither work for everybody. Ligs are better at helping you sleep and relieve anxiety.
Side effects, both can cause side effects. The extent to which how severe these are for any individual is variable. The initial side effects often wear off after a few weeks. Both can cause weight gain. Both can cause some daytime drowsiness. The difference being that with DAs, it can be sudden drowsiness. This is supposed to be reported to the DVLA. Ligs can cause blurred or double vision.
Long term effectivenese. DAs are known to lose effectiveness, this is known as "loss of efficacy". It's actually classed as a complication. It's very common. Ligs can also lose effectiveness, but since they've not yet been used for any length of time it's extent isn't really yet known.
Complications : Ligs are being found to cause serious complications in a small number of people. These are irreversible tunnel vision and respiratory distress. The latter is usually in people who have a previous history of central respiratory depression or who use opioids.
DAs can cause two MAJOR COMPLICATIONS, i.e. Impulse Control Disorder (ICD) and "dopaminergic augmentation". ICD usually develops quite quickly, but isn't common.
Augmentation can develop in months, but may take years. It depends on the dose. It is VERY common. Of the three DAs pramipexole is the worst. In the long term, augmentation with pramipexole is virtually inevitable.
Ligs can cause augmentation, but the risk is much lower. They do not cause ICD.
Both these complications are life changing.
When they occur the drug has to be stopped.
Withrawing : both cause dependency, hence witdrawing from them can be difficult.
Ligs can cause addiction in a small number of cases, but this is usually they have been abused alongside other drugs.
Withdrawing from DAs can be very difficult and can cause a condition called DAWS. Some people fail to ever get off the drug.
It seems your doctor has chosen pramipexole for you, probably without outlining the above.
DAs are actually no longer recommended as tje first treatment for RLS/PLM, because of the high risk of augmentation.
Please see this link
pubmed.ncbi.nlm.nih.gov/274...
Hi ManervaThank you so much for your reply and for explaining everything, I am going to sit down and write a list for my GP and write a shopping list for the health food shop for when I get paid.
I emailed the GP last night Re the issues plus ICD as I have these issues already and manage them already so am terrified of them relapsing or worsening, they run in my family too.
I do have a cPAP but it’s broken, I have been chasing the hospital for an appointment to get it replaced.
Your wife is very lucky that you understand and support her so much, my husband panics easily and is shutting down Re it all, I recorded the channel 5 documentary for him for when he’s ready to talk.
Thank you again for your kindness and have a lovely day.
Best wishes sarah
True, I did watch it with my support worker and cried my eyes out as it was a day after diagnosis and most of the cases were pretty much at my level or doing better than me.
I snore in Irish, I also sleep talk and hallucinations happen, luckily my husband sees the funny side of it, it’s eased a bit since coming of gabapentin but still have some hilarious conversations the next day.
Take care both of you 😀.
I was on pramipexole for >5years until a month ago. Violent kicks yes. My wife described it as me playing soccer and trying to kick the ball with might (that reminds me, congratulations to the UK for winning against Germany, well deserved). Both of us would wake up since I scared her and she'd be letting me know. Once up there was no way to get back to sleep and I had to exercise or walk around for a while.
Going back in time I would try anything other than pramipexole though. all the best
Hi DerAusgewanderteThank you so much for your reply.
My husband has said similar, it’s caused us a great deal of anxiety and friction especially in middle of the night.
How are you being treated now?
I am waiting for a call back from the Drs to see what to do, am pretty worried.
Hope you enjoy the football and have a solution so you can sleep side by side at night 😀.
I am sorry about your problem without knowing what other meds you take and what dose of pramipexole you take I can't see what is causing it. I take 2 pramipexole about 8pm I have had times when the rest has reared its ugly head but I have never been so deeply asleep that I couldn't be woken up. I am sorry I can't help but I suggest you go back to your doctor and talk it over.
Hi Nevermind61Thank you for taking the time to reply to me.
The more I read the more I suspect that my other meds and illnesses might be part or all of the problem. I have emailed my Gp surgery for assistance so will see what happens next as it’s really worried us both.
Have a lovely evening.
Best wishes sarah
Hi Sarah,
I am so glad you are getting some relief from your RLS. However, sadly there are some real problems with taking pramipexole. The more you take the more you need, and then the augmentation kicks in! There is plenty of good information about this on this site. Sadly there are no quick fixes. I wish you wellness and relief from your suffering.
Kind regards,
Chris
Hi ChrisThank you so much for your reply.
I have now stopped the tablets, I am struggling to get hold of my Gp and found on night five the RLS restarted and I had other issues including a fall so I am not happy to keep taking them at the moment.
Doesn’t help I have long term mental health issues which include self harm, I only recently got control of this so I am scared beyond works if it returning. I discussed the situation with a friend that’s a clinical psychologist and my mum and we all felt it best to halt the meds until I can get more Gp assistance.
Hope your having a good day.
Best wishes sarah
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