Hi I’m a 49 year old man and just been confirmed I’ve got Parkinson’s
Not gonna lie I’m gutted
I’ve been given co-Careldopa 1 pill 3 times a day … first week with food as they say it causes nausea, then the next week 30mins before food 6.30am 10.30 amd 2.30 pm I think it’s that early as I’m having trouble getting more than 4 hours sleep … and I use to be able to sleep 12 hours… dose anyone eles have this trouble …(sorry about grammar I’ve never been one for typing/writing) … just seems like there’s no one to give me answers that I require.
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Hi Gavlla,
Welcome to the community forum. We’re sorry to hear about your sleep issues, but we can assure you, for certain, that you are not alone. Have a look at our website, where you will find answers easily using the search function. This page may provide some helpful information: Sleep and Parkinson's | Parkinson's UK. Please also reach out to us on 0808 800 0303 and a kind and helpful advisor can talk you through what to expect, support services in your area, and they can just listen when you need an ear.
With our warmest welcome,
Jason
Forum Moderator
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Good morning Gavll … I’m 71 & was diagnosed with Atypical Parkinson’s in June 2023 following a positive datscan. Last Thursday I saw a second neurologist privately & was diagnosed with Vascular Parkinson’s. This neurologist has an excellent reputation.
He says my Parkinson’s symptoms are mild. I have gait freezing & fatigue and cannot walk far. Both Atypical Parkinson’s & Vascular Parkinson’s do not respond well to medication. So it is important to know which Parkinson’s you have.
I have been on co-Careldopa for a year. Firstly 1 pill a day for a week. Then 1 pill at
8 am & 1 pill at 2pm for a week. Then 1 pill at 8am, 1 pill at 2pm, 1 pill at 6pm for a week.
Then double that dose which is where I have been for months. So 6 pills a day.
There is a lot of differing advice on when to take your co-Careldopa on the internet.
I have never taken these pills with food & have never had nausea. I only eat once a day
From the internet … “Whilst taking levodopa medicines with food may reduce nausea, for some people protein may interfere with how effective the levodopa is. **We would therefore recommend levodopa medicines before food or at least 30 minutes after”
You need to take your medication at the same times every day. I take my first two pills around 8am, second 2 pills at 1pm & third batch at 6pm. Work out times that suit you. Don’t wake up early to take your pills. In theory I took 2 pills every 5 hours.
You did not say whether you are having troubling symptoms with your Parkinson’s …
You did not say which Parkinson’s you have …
Personally if I had my time over I would not have started my Parkinson’s medication. My symptoms were not that troubling.
co-Careldopa comes with side effects for some people, I have insomnia, REM sleep and vivid nightmares. I saw a top neurologist privately last Thursday and he suggested I try halving my daily dose from 6 pills a day to 3 pills a day for a week. Then stopping altogether. He says he thinks I have Vascular Parkinson’s but has not seen my mri brain scan, datscan or spine scan yet. So his diagnosis may change.
Any questions do ask.
There is a lot of educated guesswork in the treatment. Not all the diagnosis are the same. Not all the advice is the same. Not all the symptoms are the same.
There is no cure for Parkinson’s. They don’t treat the disease they treat the symptoms.
If or when you get side effects you get more pills to treat the side effects.
My personal side effects have been very bad & that is why I am stopping my
co-Careldopa. I may start taking these pills if stopping them hasn’t helped.
Hope that wasn’t too long and boring.
Best wishes
Steve2
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Yes, insomnia is a common sleep disorder experienced by many people with Parkinson’s disease (PD). It’s often attributed to the disease itself, its symptoms, and the medications used to manage it. About 30% of people with PD may experience insomnia, according to the National Institutes of Health
From the NHS … A common problem of taking co-careldopa is insomnia.
Best wishes
Steve2
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Hi
I was diagnosed in November at age 45 put on Sinimet first week 1 tablet 3 times a day then up to 2 tablets 3 times a day.
The Dr didn’t say how or when to take meds so spoke to local support group who recommended not to eat anything (including no milk in tea coffee) for 45 mins before taking and 1 hour after - as protein impacts how they work. I take them 8am, 12am and 5pm to help at times of working.
Finding exercise (high impact things like running, spinning etc really help)
It took longer to come to terms with the diagnoses (at times I feel sad) but feeling a lot better than I did - time helps.
Wish you well.
Thanks
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Hi Gavlla,
Welcome to the group.
Yea, it not easy being told you have PD especially at such a young age.
I obviously have no idea how bad the symptoms were before you were given the diagnosis.
I do know that I specifically refused all medication for about 18 months until I felt that the tremors etc would become noticeable.
I do know that the body builds a tolerance over time so you would end up taking higher doses.
Yes exercise does definitely help mitigate the effects.
I go to gym 2/3 times a week and cycle 1/2 times a week.
Just remember that the one who has the disease is the expert and specifically in the instance of PD, as everyone symptoms are different, you must do what you feel works for you.
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Hi steve2
Thanks for your reply … I haven’t been told what Parkinson’s I’ve got as I just assumed it’s one thing,
My consultant, I’m not very keen on as he speaks broken English and sound s as so he gets the hump with me when I ask questions , only seen him once and spoke twice on phone to him … it’s like I’ve got no one to call/speak to to ask questions and everything moves so slowly … im gonna ask my doctor (not consultant) how I go about asking to change consultant …
also my brother got diagnoses with NF1 in 2017 this is a neurological condition as well…
when I went to see my consultant for the first time I ask him do you know what NF1 as I may/ need genetics testing (waiting to hear for appointment). he’s replies no . So kinda put me bk up as his meat to be a neurological consultant
I get 4 hours kip a night (use to be able to sleep for England go work come home have a nap on sofa wake up hour later do house work then go bed get 8:9 hours kip undisturbed, less sleep started when I tried giving up smoking and has stayed ever since) and wanted to know what sleep aid I can take as I think the not getting enough sleep kinda don’t help with health, as I work as a painter/labour still .
Many thanks
Hi Clive
I had a tremor in my right thumb for a couple of months last oct/november … went doctors in December was told it’s not Parkinson’s but sent me to neurological department appointment 3 months later in March in the mean till the thumb stopped shaking and it felt like it moved up into me right arm shoulder and down me bk right side my donating side
Jd2004
Thanks for ur repok
Think I’ll have to find an airport group local as it Yh I’m feeling like I haven’t got it and that it’s something eles living in denial …
Good morning & thanks for your reply.
When did you get diagnosed with Parkinson’s?
How long have you been taking the Co-careldopa ?
Have you had any scans done?
Do say where abouts you live as someone reading this might have a good neurologist your GP can refer you to.
There are a lot of knowledgeable people here on this site.
I would also suggest you phone the helpline here & speak to one of the Parkinson’s nurses. It is free & they are very helpful. 0808 800 0303. I have phoned them a number of times when I have needed help or support. You might talk to them about finding a good neurologist near where you live.
My initial experience was like yours. It took me 3 years to see an NHS neurologist. I got referred to him by my GP. I thought the problems I had were to do with my spine. My GP said he thought I had Parkinson’s. So I see this neurologist who is from Armenia and does not speak English very well. He quickly arranged for me to have a datscan, a brain mri scan and a mri spine scan. When these came back he told me that my datscan was positive for Parkinson’s and in his opinion I had Atypical Parkinson’s.
He told me that my Parkinson’s did not respond well to medication, did I want to bother taking any. This gents speciality was neuropathy not Parkinson’s. I saw him once more and then he left the NHS and returned to Armenia. So I’ve had no NHS neurologist since then. But I do have a good Parkinson’s nurse who I see every 6 months.
About a year ago I got cheap health Insurance with Benenden Health which costs £15.85 a month. I have seen 2 excellent Neurologists through them for free. The last one I had to wait only 1 to 2 weeks for an appointment.
Any questions do ask. And do let us know how you get on.
Best wishes
Steve2
Hi steve2
Thanks
again for ur reply
I got diagnosed a week ago, has dat scan on a Friday consultant rand me Monday (didn’t say much apart from he’s sorry to say I’ve got it … tried talking to him but kinda got the impression I was a nuisance asking questions).
Only started taking meds yesterday don’t feel much different if not worse as me tremor fills like it happens more often now …
I’m in Kingston London,
how do u tell a consultant I want I different consultant can’t get on with you sorry … don’t sound nice ,
had a MRI bk in February but then we didn’t think it was Parkinson’s that cone bk fine …
when I was seeing my consultant for the first time bk in March he called me in and said would I mind telling him why I’m here as he has no notes … after the observation test sat me down and said it’s Parkinsonism I can have a day scan but even if that comes bk I’ve got plenty of dopamine he still thinks I got it … just the way he said it didn’t go down to well
What I don’t get is they say take meds at the same time … now coz my sleep is bad, and if I get a chance if a lay in and miss my first med what will happen surely it’s not that bad to miss one med !,
I have spoke to nurse on here briefly once when I was at work so couldn’t speak long … I know what it’s like u have so many questions but forget to ask
Regairding ur exsorance with the NHS so sorry why haven’t they gave u another consultant as of yet …
Good morning Gavlla …
Do you have a Parkinson’s Nurse? It is usual to have one. They deal with the day to day control of your medication. Ask your GP about getting one.
You might not like this neurologist but he has got you a brain scan which was normal and he has got you a datscan. He has also started you on medication, Co-careldopa is a good one.
I haven’t been regular with the times I take my medication. I don’t think it is too big a deal. The important thing is to take your medication 3 times a day that suits your routine. 8am - 1pm - 6pm or 9am - 2pm - 7pm. It is up to you.
This medication is to control / lessen your Parkinson’s symptoms it isn’t to cure you.
As I have said look out for side effects of the medication.
I’d try and keep a sort of medical diary. Sort of notes.
- HAD A GOOD NIGHTS SLEEP.
- SHAKES WERE BETTER, SHAKES WERE WORSE ETC.
I wouldn’t be too bothered about changing your neurologist after the initial diagnosis, as long as you feel the diagnosis was correct.It is unlikely you will see him that often.
Once a year is about par, if you are lucky.
Best wishes
Steve2
PS … Try and get into a routine about writing down the questions you have and either ask here or phone the helpline when you have a longer list of questions.
Hi steve2
Haven’t been given a nurse
Getting a go appointment is like a 4 week wait lol but I will ask when I’m due to see him on 2june,
The brain scan MRI was a doctor as I was getting pains in my neck in late December/january …the dat scan was, even tho he was adamt it wouldnt be worth it as I’ve got what he called Parkinsonism, but now dat scan confirms I’ve got parkins.
So far I’ve taken 3 pills Saturday and one today, but today I’ve called 111 and they sent an ambulance out to me as I was having vivid thoughts and delusion. The ambulance staff spoke with a doctor at 111 he advised me to stop taking them as the ones I have taken wasn’t enough to allow me to stop …so I’ve stopped … till I can speak with a parkins nurse tomorrow hopefully … all this why I’ve still got to work
Why I was taking the med my tremor and thoughts got worse … so hopefully I can get tho to a Parkinson’s nurse tomorrow …
This stuff is scary … my brain works over time as it is with out all this … and my anxiety levell has got worse they say it dose bring on anioxty and depression but everyone is different
Hi Gavilla
Glad you came on here to ask your question.
As you probably have found out by now you are now a member of a club where no two people will have the same symptoms nor will they react to the medication in the same way either.
However it’s all part of the journey and I’m sure you will find your own way through the maze of information.
I like you when diagnosed some 12 years ago was on Sinamet and suffering from terrible insomnia something that is still a problem to this day.
But I have since discovered that I actually get on much better with the generic co - careldopa but because of oesophageal problems I unintentionally found them much better before food and especially dairy of any description.
This like I said is all immaterial really as you will given time to try different ways and keep it diary while you can I assure you will find what is right for you and what side effects are shall we say worth it and which are unacceptable to you.
I’m very aware that this is an extremely vague response to your question but I promise you it’s no more vague than if you had ten neurologists .
I do suggest that you look for a neurologist who is interested in specialising in movement disorders.
Good luck to you my friend
you will find your way I can assure you that much at least.
Tommy
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Just one little addition, do not be afraid and do not let it allow you to become a prisoner in your own home be it physically or mentally.
Friends will slowly disappear honestly so attend as many Parkinson’s events as possible.
And nothing better than the one coming up soon sport Parkinson’s tryathalon at the stoop ( quite apt really) a sense of humour is important but nowhere near as important as exercise.
This meeting is on the 22 June and you do not have to take part in anything but what it will do is show you exactly what help is out there and show you much better than I can explain the difference in symptoms that everyone has and also open up your eyes to the importance of exercise and belonging.
You will see teenagers to real oldies in their sixties ( lol ) and come away with more knowledge than can be given to you on a post on a forum which of course happens to be where you got this advice so shoots down that explanation like I said it’s a maze and you will get to were suits you best
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Hi,
You are definitely not alone!! Unfortunately sleep deprivation is a common symptom , with me its the nightly recurrence of horrendous night terrors . Have tried everything eg melatonin , sleeping with light on, no coffee, tea etc but nothing worked . Had to revert to clonazepam which definitely helps and also relieves pain from muscle spasms . However as with every medication there is a downside and the next day can feel like one big hangover. Get advice from your Neurologist or Nurse on how you can get a better sleep . Good luck friend 
T1
thanks for the reply
emphasized textWas woundering where this meeting is on 22nd June, pls let me know
Dose anyone on here live with this and not take medication .’ …
Do people on here ever think u have been wrongly diagnosed (or is it just me)
I had a thought and thought i could be a diabetic as when I have something with sugar in it my tremor stop, I done this today then I googled it and this poped up
|Yes, it’s possible that the
|shaking or tremor you’re||
|experiencing in your right arm,||
|shoulder, and right side of your||
|body could be related to||
|diabetes, specifically diabetic||
|neuropathy or hypoglycemia.||
|Diabetes can cause nerve||
|damage (diabetic neuropathy)||
|which can lead to tremors, and||
|low blood sugar (hypoglycemia)||
|can also cause tremors. *||
Elaboration:
Diabetic Neuropathy:
Diabetic neuropathy is a type of nerve damage that can occur in people with diabetes. It can affect various parts of the body, including the hands, arms, and legs. Symptoms can include tingling, numbness, pain, and weakness, as well as tremors or shaking.
Hypoglycemia:
Hypoglycemia is a condition where blood sugar levels drop too low. It can cause a variety of symptoms, including tremors, sweating, confusion, and even seizures. •
Other Causes:
It’s important to note that tremors can also be caused by other conditions, such as essential tremor, Parkinson’s disease, or medication side effects.
I know little knowledge is not enough but I’m certainly asking my doctor when I see him next …