Hi, I’m Frances, and my husband was diagnosed in 2022 with PD, although the symptoms had already started in 2020.
He was given Madopar 100mg x 3 daily doses, but after a year had started feeling very anxious and overwhelmed, so the dose was put up to 100mg and 50 mg x 3 daily doses.
Since the beginning of December 2024 he was getting terrible episodes of anxiety, early in the morning, feeling he couldn’t breathe and couldn’t get into a comfortable position. This has been steadily worsening - the nurses gave him an extra dose, but now it is also happening during the day. Finally we went to the GP and I asked for something to calm him down and was given Diazepam. He takes that sometimes and also two paracetamols which seems to help a little.
It’s as though the medication isn’t working at times. He has the rigid type of PD, so no tremors, but he goes through a really terrible time - says he throbs all over and it’s as if there was a war going on inside!
Any help, advice or suggestions welcome!! I am so distressed I don’t know how to help him!
Many thanks
Hello Frances … Sorry to hear you are understandably anxious. Why not give the helpline here a ring. 0808 800 0303
I also have Parkinson’s & am on Co-careldopa. 2 pills 3 times a day. I was on Madopar but I didn’t get on with it so I stopped.
You don’t say how old your husband is or if he is suffering from any other conditions. He may be on drugs that don’t get on well together.
But do give the helpline a ring & speak to one of the Parkinson’s nurses here. I spoke to them in the early days & found them a great help.
Best of luck.
Steve2
Thank you Steve, yes I will ring the nurses. My husband will be 80 next month and he had prostate cancer 6 years ago. Only takes Tamsulosin apart from Madopar.
Have you contacted his neurologist? The neurologist may have a view on his symptoms and appropriate medication.
Regards
Doug.
Hi Doug,
Thank you, I phoned the number Steve suggested and spoke to a nurse who recommended talking to my husband’s neurologist to see if the doses can be more frequent to avoid the big drops he has.
We are seeing his NHS Parkinson’s nurses on 11th Feb, in the meantime he was given Madopar dispersible to help during the night and he has to hand Paracetamols and Diazepam if things get too bad! Every little helps, and we hope that the medication will be adjusted to his needs, as now he doesn’t want to go out because he is afraid he will get those severe internal tremors and get stuck!
Thanks for your concern,
Frances
Does he have reviews with his neurologist?
Doug
Hi Doug,
Since he was diagnosed in July 2022, he has seen the neurologist (consultant) three times to date and the nurses, once. At first the medication did wonders! But then a year later, we went in a trip and things started to go haywire. The doc upped his medication and checked him again three months later. He seemed a bit better… since December last year he had a big dip, we feel very much to do with in/off symptoms, but with high levels of anxiety, internal tremors and restlessness. We have an appointment on the 11th February with the nurses, and I am hoping they will give him his doses more frequently.
I have been wondering whether it is better to phone the nurses or go direct to the consultant?
Thank you for your concern,
Frances
Hi Frances
I do not get internal tremors but my Father, who also had Parkinson’s Disease did. It must be an unnerving feeling.
If his situation is/has declined, I would opt for contact with his neurologist to consider prescribing different medications.
Take care
Doug
Hello Douglas … I had a technician do an ultra sound on my bladder. He told me I had an internal tremor. Did I know ? … I told him I had Parkinson’s. It is something I wasn’t aware of until he pointed it out.
Best wishes
Steve2