My 77 year old sister has finally responded to treatment for the above , but her RLS is amplified,
is often unbearable, happens sometimes all day and night, and taking Mirapex or Pramiprexole seem to be the cause of terrible hallucinations during sleep. Any suggestions ???
Hello,
There seems to be quite a lot information linking worsening RLS to Congestive Cardiac Failure (CCF). This includes sleep disturbances.
One suggested mechanism for this is that CCF can cause anaemia. It is known that there is a link between low iron levels and RLS. iron level makes RLS worse. Does your sister have anaemia? Do you know if she has had a blood test (full blood count), recently?
A better test would be a test for "ferritin" levels.
Irrespective of this RLS can apparently occur in people suffering from CCF anyway.
Hopefully you can discuss this with her doctor. You need to be well informed about RLS and CCF however as even some neurologists are not very knowledgeable about RLS never mind cardiologists or GPs.
A doctor might be tempted into increasing her pramipexole dose. That would really not be a good idea.
She will need other medication. That's up to the doctor, but I find at least one study that suggests Oxycodone might be appropriate. It is licensed for RLS in the UK. It is the only opiate licensed for RLS in the UK.
It is a medical decision and you will probably find doctors very reluctant. I suggest you and your sister explore the pros and cons of this and then discuss it with the doctor.
PS, it's probably not her heart meds causing her RLS, but what are they?
Manerva,
Thank you for replying and replying with very thoughtful and sound information.
My sister has had RLS most of her life.
It’s the amplification of the symptoms that
has occurred recently. She has tried a few of the RLS meds but has frightening hallucinations and then stops the RLS meds in a day or two.
She takes klonopin which only sometimes helps. I will ask her again to check with her doctor about testing her ferritin levels.
She is very hard of hearing and can’t always get everything I say. I will try texting about ferritin again.
I agree that doctors know very little about restless legs/ periodic limb movement disorder. I may try to get a release of info
So I can talk to her neurologist.
I have, ironically, RLS/PLMD myself. Using my cell phone brings it on for me so I have to end this now. But I thank you for your suggestions!
Klonopin is a benzodiazepine and as such may be of some help in gaining some sleep. It may have little effect on RLS. It could lead to some confusion at night.
As I previously wrote the only positive suggestion I've found for dealing with RLS associated with CCF is opiates.
Re: opiates: not sure exactly what she took
in desperation, to get some relief/sleep, but she took a pain med, most likely a powerful
one, and was able to finally stay asleep/and quiet her continual RL. However, the next day when I called to see how she was, she was having trouble speaking, slurring her words, losing concentration, etc.
She is in misery when she has had no sleep,
having had hours and hours of restless legs. The RL meds cause hallucinations that
are vivid and real to her. So since her CHF
is under control because of the diuretic, I wonder if the diuretic is causing the relentless RL. I will look at the list of meds she sent me and see if the kind of diuretic
she takes is an antagonist. Her neurologist
wasn’t helpful after they concluded thru testing that my sister didn’t have dimentia,
but had experienced a very slight stroke.
So now one doctor thinks she should see a psychiatrist. I believe this is all med related.
I may be wrong. Meanwhile she suffers.
I'm sorry about this. It is a complicated case and I hear her distress and your worry. Yes it is awful when you can't sleep and it sounds like she's suffering from both sleep deprivation and toxicity. Opiates can be very toxic when you're a bit older, add CHF to that plus the stroke and it all adds up.
You need to find out if she is taking opiates and which one, dose, frequency etc. This might be difficult for you since I suspect you might not live near her.
It would be helpful to know which diuretic she's on and any other medication.
The, see a psychiatrist, bit seems a bit like the old "it's all in the mind" thing that some doctors come out with when they can't figure it out (or can't be bothered).
It sounds to me more like an acute organic condition something that used to be called a "toxic confusional state". Being acute means it's reversible. She needs some GOOD medical attention possibly with a multi-disciplinary approach.
They need to rule out the organic first before rushing into any kind of psychiatric diagnosis.
I appreciate your understanding how my sister is suffering. I wish I could quiz her neurologist about her thinking on the causes of my sisters RLS and tendency to hallucinate. I understand that Mirapex and pramipexole are the same. Either one was followed by hallucinations. I am going to talk to her about ferritin once she isn’t under the influence of the cosine derivative. And now my leg is jumping. I just can’t use the cell phone.
Oh how I wish I could have access to the necessary info ( ex: what med or meds is she taking and also access to her neurologist; also be able to discourage the
Idea of seeing a psychiatrist. Unfortunately, her husband isn’t open to suggestions, and my sister is rarely able to
process my questions and requests for information. Her son would be very forthcoming but he is temporarily out of the country. She has told me, “I DO take iron already.” And so I have to go about that in a different way. I am interested in the suggestion that she is suffering from
Organic toxicity. Her doctors do not collaborate. She tells me that her legs jump and kick very hard and so she has to stay standing up, but her balance is poor and she has fallen several times. I need to do some more thinking about this, try to find out the meds she is currently taking.,
What kind of diuretic, for example. Have to sign off because of an appointment . Thanks again!!! Your suggestions are sound and well-informed, unlike many doctors when it relates to RLS/PLMD!
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