I have had an ever increasing amount of drugs since I was diagnosed with PD a year ago. I think I am no better now than 1 year ago. Has anyone every just stopped taking the tablets? I know you have to wean yourself off them but what's the point of taking them if they aren't working? I hate this catastrophic disease, it's made me so miserable! But I'd rather be miserable an drug free than miserable and taking tablets all day. Anyone ever stopped on their own accord?

Quick message - yes I have - similar reasoning to yours - straight advice is don't do it - for many reasons particularly it's dangerous and you learn nothing from it. There are better ways.

I can't say more at moment but will later.

Grey

After several years of peculiar walking and a conviction that it was just my usual ME syptoms I was finally diagnosed with PD, this about three months ago and put on Madopar. Started with one pill 3 times a day with meals, which did nothing, then 2 with meals, and finally 3. There was some small improvement in leg strength but overall little to justify chancing having my teeth fracture and the worsening of balance I was experiencing. So last week I decided to stop them. Today so far I have had only one and shall just have one more with my evening meal. And so this far I have gone from 9 pills a day down to 2. Tomorrow I shall try to make it just 1 pill, the day after, hopefully, none. Do I feel any worse? My legs are perhaps a little worse, though this is debatable since they tend to fluctuate anyway. My balance however is much improved. But the main benifit is that I feel better in myself, problems I have due solely to PD rather than pills. Of course, this might not last..!

I believe you can suffer withdrawal symptoms (especially with agonists) unless you come off very slowly over an extended period of time.

google - Dopamine Agonist Withdrawal Syndrome in Parkinson's - there's been a study

Hi Capella,

Your Neurologist might have suggested taking Madapar (Levadopa) with food to help reduce feelings of nausea. However, for some people, protein seems to interfere with the absorption of Levadopa and can cause it to be less effective. It may be worth taking Madapar 45 minutes before your meal. I also recommend you keep a drugs diary and monitor how you are responding to the drug, making notes of drug timings, when you eat, how you are feeling both mentally and physically. You can then show this to your Neurologist, which will help him to tailor the drugs to your needs. Also it's important that you stick to drug timings to get the full benefit of the drug. It can sometimes take several weeks before you feel the full benefit of the drug so don't expect changes overnight.

It may well be that Madapar doesn't suit you and Sinemet may work better for you ~ this was the case for me. Sometimes combining a drug with another drug can make it work even better for you. Unfortunately, it is trial and error. Some people are fortunate, settle on a drug regime straight away, others are less fortunate, and find they have to try several drugs/drug combinations before they settle.

Below is a link to useful booklet about the different drug treatment for Parkinson's

http://www.parkinsons.org.uk/PDF/B013_drugtreatmentsforparkinsons.pdf

As for coming off meds without professional guidance, I strongly recommend you don't do this. I agree with the advice grey and Krugen have given.

I also think that lifestyle and a positive attitude play a substantial role in how we respond to medication and cope with Parkinson's. It's well documented that STRESS has a major impact on Parkinson's and is truly damaging because it simultaneously exacerbates the symptoms and facilitates the progress of the disease!

I've decided I'm going to try...I need to do something!

Hi Spam95,

I replied earlier as your post struck a chord with me. I was about 18 months into medication when I had similar doubts and wondered what was PD and what was side effects. I was feeling like a zombie due to irregular sleeping habits and concluded the only way to find out was to stop the meds.

Of course, I picked a time when my family were away, so with no one to help if things went wrong, I stopped. Felt great. Things got better until withdrawal kicked in and I mean kick. Vomit, diarrhoea and hurt like I'd been in a car crash. Luckily my wife and kids didn't come home to a rather messy corpse. I stuck to it and the withdrawal symptoms slowly disappeared. More luck on my side, no permanent organ damage - well not as yet detected.

PD symptoms improved, finger tapping no problem and my gait was so much better, I remember showing off tricks to my wife proving I was much better un-medicated but of course not worrying her with the bad bits. I also joined this forum and posted on my experiences of over-medication.

I spent at least another year un-medicated until I gave in to the inevitable (under pressure from some forum buddies) and resumed medication under the guidance of my wise neurologist who took into account the problems I had had with medication the first time round. And this time things got better; I was back cycling and hill walking and still am. OK I up the dose occasionally but it is a progressive disease so what do you expect? If popping a few more tabs keeps me this way I'm OK with it.

I look back on that un-medicated year and believe that the initial improvement was probably the placebo effect, it soon wore off and I spent a lot of time kidding myself that my PD was improved. It of course was progressing and I could have been living a fuller lifestyle.

I learned a lot from this, not least was to trust the judgement of my neurologists. And involve them. If I analyse what I did, I went a long way round to find the right meds for me, lived a year or more under par and put myself through an uncomfortable experience.

Spam, the above is about me, I'm not qualified to advise you but I would ask you to learn from it. Understand why you want to consider the course of action you propose and explore alternatives. Read up on drugs and understand both the benefits and side effects. A good place to look is the main site here, there's plenty of good publications to download and the more knowledge you gain the better you can manage this disease. My neurologist now prescibes the next level but leaves it to me to decide when to start. I sometimes reduce intake by a small degree to see if I can reduce but inevitably not.

One observation on your post, it's very negative. "I hate this catastrophic disease, it's made me so miserable!" If you're not being treated for depression, have you considered it. Negative thoughts can make your condition much worse. I just wonder if that's your real problem. You are in good company here should that be the case.

Best wishes,
Grey

Hi Grey

Am very glad you posted on this subject. O/h was contemplating coming off meds. It's been difficult recently as we've both been suffering from a virus and his meds have not been working well at all.

Suffice to say he was questioning before the illness and the side effects are probably what bugs him the most. He has never had the nausea thank goodness but insomnia, claustrophobia, obsessiveness and panic attacks are really upsetting him.
He was lamenting yesterday that we do virtually nothing these days, but simply get through the days, with odd family events which he loves and meet up with understanding friends now and then for short periods.

On the other hand, he says the fatigue is so all consuming that he doesn't really mind being at home a lot as he loves where we live and is happy in my company with our dogs around us.

Thanks Grey and JC for your well thought out and elegantly expressed comments. I read them with interest and have thought about the issues you raised a lot. What I'm going to do is speak to my neurologist tomorrow and then make the final decision.

As for the potential depression, it's a tricky one. I feel that I'm sad and angry a lot of the time, but I am not in the position of doing anything about it. I think I don't have depression but I'm not very happy either. I'm just sooo tired.

I have many wonderful parts of my life, which I still love, particularly my wife, who has been wonderful throughout.

I'll post tomorrow with the neuro's comments

spam95

Hi Spam,

Depression is tricky but quite common in PD cases. What with the chemistry of PD messing about with your brain, add the effects of the medication (positive and negative) and on top of that cope with the news you have PD - well you'd have to be nuts not to feel blue at some point!

Coping with the diagnosis is often compared to grieving - a natural process which is healthy unless it gets out of hand. So if you're going through various phases of grief - guilt / why me / blame / anger / sad etc. - you may be OK!

Concentrating on the wonderful parts of your life is worth a thousand pills and more. Take care of that wife, she's special and needs looking after.

Good luck with the neuro - my humble opinion would be if you get the tiredness sorted out your world will be a much better place.