Good Morning People,
I’m on 1mg ropinorole for restless legs,25/100 co-careldopa three times per day and one slow release overnight. Previously I was on Amitriptyline for nerve pain caused by bulging discs in my back. Had ghastly dreams and was moved to Gabapentin which made me feel dizzy, unsteady and finally, Nortriptyline. I t was while on Nortriptyline that the restless legs paid an unwelcome revisit and the Restless Legs Uk website confirmed my suspicion that tricyclic drugs such as Nortriptyline and Amitryptyline can cause restless legs. So,with GP and Parkinson’s nurse agreement , I have weaned myself off Nortriptyline and carefully titrated onto Ropinorole. The restless legs has improved but the nerve pain is worse, to the extent that I had to leave the cinema yesterday as sitting for any length of time is deeply uncomfortable; only short car journeys are bearable; a flight is out of the question
I was 12th in the queue for GP cancellation appointment today. I do have a telephone appt but not until 10September. Next appt with Parkinson’s nurse is end Sept, next March 2025 with neurologist.
I still have some Gabapentin tablets and my question is should I try to gradually reintroduce them and “see how it goes” .? Has anyone ever done that i.e. self-medicated, because quality of life was going downhill rapidly?
I was on Amitriptyline for RLS before my PD diagnosis but they made it worse. My GP put me on Pramipexole 0.088mg one to start before increasing to two before bed. They do work but my consultant has put me back down to one so getting some RLS at night again.
Good morning Anna2 … I have near identical issues to you [Back pain, leg pain, restless legs, terrible nightmares, tiredness, fatigue etc] & am on similar medication.
Amitriptyline etc. I never quite know if it is the health issues I have or the side effects of the medication I take. I take up to 15 pills a day.
Following the unbearable nightmares I did ask if I could stop all my medication & slowly start again. This was to try & combat the tiredness, sleepless nights, restless legs etc. As a lot of the pills I take have these issues as side effects. Ideally I wanted to be given sleeping pills.
That request came back with a NO !! Instead I was given Quetiapine as an extra pill to help the dreams & help me sleep.
I do change my medication myself … I went from 2 x Amitriptyline a day to only 1 pill a day, then no pills a day & back to 1 pill a day.
I do email my Parkinson’s nurse & GP with these changes & reasons for them. I have never had any negative reaction to them. I have also stopped my Ramipril that I was taking for High Blood Pressure as the other medication I am on lowers my blood pressure. I do keep a record of my blood pressure readings & the sort of day I have had health wise.
In your case I would suggest you phone the Parkinson’s UK nurses here & talk to them. It is free & they usually phone you back within 24 hours. 0808 800 0303
My own medical team have always agreed with the changes I make to my medication.
Thank you both for replies. RLS is a form of torture as the only slight relief is to get up and walk about at 2,3 4a.m. I hope you get more relief , Westcountrynordic.
Steve2, I like the idea of emailing the Parkinson’s nurse and neurologist with changes I’m proposing and reasons for that. Perhaps they will have more time and inclination to respond as , when I speak to the secretary who promises someone will get back to me, it seldom happens. I did ask the P Nurse how i was to cope with the nerve pain and he said ,“Let’s just deal with one thing at a time,” i.e. the restless legs which means for the past few weeks I’ve had gradually worsening nerve pain down both legs.
The people on this Parkinson’s UK website are great and do respond quickly but are, understandably , reluctant to interfere with an individual’s medication. I do have a very helpful and patient GP but I am of the generation that still doesn’t like to “bother the doctor” and anyway, getting a GP phone call appt is like getting an audience with Taylor Swift. I reckon I could check the BNF/Nice website for drug interactions and put my self out of this painful misery by going back on the Gabapentin.
Best wishes
Anna 2
Good evening Anna2 … It is your / my body & we are / should be the decision makers
as to what happens to us. Of course we should listen to our medical team.
Lat year, December 2023 I think I had NCS tests which confirmed that I had Neuropathy. I was told that I would get an appointment with a Neurologist to discuss my options for treatment. I did have a number of blood tests to see if there was anything obvious that was causing this problem. The blood test results were normal. Do you think I’ve had any contact from any Neurologist after this 9 months wait? Of course I haven’t. Not even anything in the pipeline.
Understandably I am having to make the decisions. So I decided to experiment with
my Amitriptyline dose. It didn’t make any difference as it happens. So I went from
1 pill to 2 pills to 1 pill to 0 pills to 1 pill which i think is the best dose for me.
The Amitriptyline helps my back pain. This pain is like a knife has been rammed between my shoulder blades. I have to take an Amitriptyline pill for this. The pain can be horrendous.
Also my GP refuses to give any “Parkinson’s / Brain related” advise or treatment as it should be my absent Neurologist.
