I’m 51 years old and been diagnosed for over ten years now and I seem to have hit a wall where drugs just aren’t helping that much.
Until recently my meds were
200mg of amantadine
200mg of amantadine
100mg co-beneldopa slow release
I was having wild fluctuations of off periods and akathesia. I also found that if I had prolonged off periods the only way to get back on track was to stop taking everything except the Ropinerole which would get me back on track sometime that day and I would stay symptomless for 24 to 36 hours. Once I started to get freezes I would start taking the co-beneldopa again and all would remain well for 2 to 3 weeks freeze wise but akathesia’s cut back in again sooner
My consultant then changed my Ropinerole (12mg twice daily giving 24mg) to 12mg Rotigotine skin patches to even out the peaks and troughs. When I pointed out that this was halving my dose in one go 8mg Ropinerole was added to my 17.00 meds
This seemed to work well evening my day time offs and ons quite successfully but that even level began to go downhill to the point where I had an 8 day off that I only escaped by going back on to my Ropinerole.
My consultant is very much in favour of me experimenting and finding my own way to what works best for me and I know we’re all different so he can’t wave a manic wand and say ah yes increase thus drug by this much and you’ll get your life back but I’m really struggling.
The biggest issue I have is too much and not enough meds show in exactly the same way so when things stop working how do I know? If I think it’s too much and cut down and there is no improvement do I assume I was wrong and increase again or was I right but haven’t waited long enough?
Has anyone been through the same and how did you get to “The Sweet Spot”?
I’m too young to be losing over half my day every day and I certainly can’t afford days that spill into weeks
Yes, we have been here. My partner could not take as much ropinirole as you and was on co-careldopa (sinemet) instead of co-beneldopa, but basically we hit the same wall as you. This was pretty alarming as my partner’s symptoms were mostly stiffness and locking up, so a lot of pain was the result, and a feelng of being crushed. Eventually a new meds regime was instigated; a more even, smaller input of the sinemet, and ropinirole replaced by a 24h rotigotine patch, offering a more even dosage.
However, we pretty much had to fight to get this to happen. The patch was too small a dose and it took some argument to get it to a higher dose. We enlisted the help of our fantastic PD specialist nurse whose intervention was able to generate the help needed from my partner’s consultant by making it clear how urgently their help was needed,
While your consultant is right that only you can decide whether a dose is working or needs adjustment, you will need their active involvement to work out a better regime as it sounds like you’ve gone as far as you can with the current one. They can ensure your GP adjusts your prescription, and they can also suggest other meds that may help the main drugs work more effectively. Expecting you to do this is sadly inadequate. If they cannot engage with the problem properly, perhaps you could speak to your GP to find out if there are any other neurologists in the area who might help. We had to change neurologists early on when my partner’s consultant kept saying “You’re not brave enough with this medication” when the meds were actually having a highly detrimental psychological effect on my partner.
So… try to find a PD nurse if you don’t have one already. Expect to have to change your meds regime, at least to some extent. Get your neurologist to engage fully with the problem – don;t be afraid to let them know how much you are suffering. With their fully engaged assistance, chances are you can feel much better soon. Good luck with it.
Thanks @tiredcarer. I will start being a bit more bullish!
I know your husband won’t have experienced this (!) but I’m also going to see if I might t try HRT. I can’t find much where some one has Parkinson’s and THEN goes through the menopause it’s mostly the other way round but it’s been suggested that this may take out some of the fluctuations
You are right about my husband not experiencing this – because i don’t have a husband! I had not heard about HRT and PD, which is interesting. You are young onset too then – we have been there… 20 years ago. The illness is meant to be less aggressive in younger sufferers, though it seems to get around to aggression later on! I’d be very interested to hear of any improvement through HRT. I hope it helps you.
Our research team have published a blog about how Parkinson’s affects men and women differently and there is a section in there about how Parkinson’s may be affected by the menopause. Hope this is helpful.
You can also speak to the Parkinson’s nurses on our helpline about your medication.
Warm regards, Charlotte - Moderation team
Hi, I was diagnosed when 44 years old and a similar thing happened to me when 52. Luckily I was offered the chance of having DBS and it has changed my life. Not for everyone but certainly worth discussing with your consultant. Good luck.
I have been told that I can attend to see if I’m suitable for DBS but I think it would have to be a lot worse for me to consider it.
The thought of any surgery, especially in my head … no no no !
Sorry I’m guilty of being Parkinson-ist. I made assumptions based on “normal”
The word “carer” is in your screen name so you must be female
Your partner must be a man
He must be your husband
… I didn’t even realise I was doing it, I genuinely and profusely apologise
I’ll let you know how I get on with finding about HRT
Gosh, no need to apologise. No offence taken or caused whatsoever. And Tired is also in my screen name which is a likely sign of a moany old bloke rather than a stoic female.
Yes, do let me know. I might even take it myself! It might make me less grumpy!
Re DBS, I don’t want to put ideas in anyone’s head, forgive the appalling and inappropriate play on words, but while it is been a positive experience for many sufferers, our experience has been less so. There have been some benefits, but not as many as we’d hoped and it has not been life-changing by any means. I wouldn’t rule it out, but nobody should think it is guaranteed to be a transformational experience. Perhaps we have just been terribly unlucky.
If I was asked my opinion, which is purely from a non-medical viewpoint, I would say exhaust the other possibilities first, with one eye on the clock in case anyone decides that you’re applying for the operation too late in the progression of the illness.
Good luck with the HRT and the drug regime change.
You have a fairly complicated drug regimen. To help you visualize what’s going on you may wish to try:
This app draws a graph of your levodopa equivalent plasma levels during the day. This is based on the pharmacokinetic (what the body does to the drug) properties such as CMAX and THALF.
Is it certain that you have akathisia and not RLS?
That’s a cracking tool thank you.
Is restless leg literally just legs (I assumed it is). If so yes because it’s mostly my head and neck with a mind of their own
Have you tried Ambroxol following the recent trial regemin? how about full spectrum CBD Oil?
I have a dispersible version of madopar that kicks in within minutes but fizzles out fast. Do you have any idea how I can add thus?