Some difficulties with Parkinson's medication!

One of the problems of having a condition with up to 40 different symptoms, is the difficulty of getting the medication right. So, to use myself as an example, in addition to the shaking I can have bouts of anxiety and sleep difficulties.

And those are only the headline problems.

There are ways of controlling these problems and for a long time my prescribed medication helped me control my anxiety. 

Then after my annual Parkinson's MOT, it was decided that my sleep difficulties needed addressed and my medication was changed to Rigotonine patches. And it has to be said my sleeping improved almost immediately.

It's just a pity everything else seemed to go to rats.

Suddenly my anxiety became a serious issue. At times it became almost paralysing. If, for example, I needed to contact my bank, I found this almost unbearably stressful and eventually I had to leave it to my wife to do on my behalf.

So I contacted my nurse practitioner and asked for my medication to be changed back to what I was on previously. I was told that this couldn't happen.

So a lot of time was spent trying to get the new medication to work as I needed it to. This mainly involved raising the levels proscribed.

The effect of these changes seemed minimal, with little additional benefit. My anxiety and motor functions were still significantly worse than on my previous meds.

I arranged for a review with the neurologist. I got an appointment, but frustratingly this involved a wait of three months.

I didn't want to lose the sleep benefits of the patches but needed more effective impact on my motor control and the anxiety. I decided I was going to ask for my old medication, plus a nighttime patch.

When I had mentioned this to the nurse she had said that this was never done.

I decided to try anyway.

Anyway to cut a long story short, the neurologist agreed to my request and I am now back on my old medication, with a nighttime patch to help my sleeping.

And it seems to be working, my anxiety is greatly improved and I'm still sleeping nicely.

I haven't felt this good for a long time, it's just a pity that all this took months. Not everything works as it should, but this is Parkinson's, getting the balance of medication right can take a while and inevitably is something of a compromise. 

Being able to speak face to face with my neurologist was undoubtedly a big help in this process and was key to the resolution. As I have said on a previous post, we have a chronic shortage of neurologists in this country so during the whole problem I hadn't actually seen him face to face or communicated with him directly.  It had all been done through the nurse practitioners, who whilst excellent are limited in what they are allowed to do.

Like being allowed to prescribe. They aren't.

But the neurologist can. It's just a pity that appointments can involve a wait of months.

Its good that my anxiety levels have reduced, but I still have an appointment with a GP to discuss going on Citalopram. Which hopefully I can now avoid, but we'll see.