I'm Newly Diagnosed


#1
Hi
I am a self-employed roofer and have just been diagnosed with Parkinson’s at the ripe old age of 48. For the last 2 years I have been walking round unable to swing my right arm, holding it up in a position similar to having it in an invisible sling! As with ‘youngessexman’ , it’s been blamed on over use of power tools. With my fine motor movements disappearing, my handwriting became smaller and has now pretty much dried up completely. At mealtimes, I would also stare across the table at my daughter without much blinking, aware that I was doing it but unable to stop myself. All this time my wife had noticed that I was slowing down. Various trips to the docs led to having physiotherapy for the arm with the physio’s crowding round me saying that they’ve never seen anything like this before?
Then 6 months ago, I started to have an internal shaking (sometimes external) which is now always present. It’s in my yawns, stretches and when I close my eyes, plus my teeth chatter. Back to the doctor who says I AM NOT shaking but as I am leaving, out of frustration, says he’ll refer me to a neurologist.
A few weeks later as he calls my name and watches me walk up the corridor towards him, he diagnoses me on the spot…

Sorry to waffle on but here’s where I might need some advice. I’m currently on Requip XL for about 5 weeks now and last week went up to 4mg a day from starting on 2mg. Since starting these, I have got progressively more light-headed – light on my feet and unbalanced. I believe this is a common side effect but as you can guess from my job description, being dizzy and working at height every day doesn’t go too well together!

Can anyone advise me whether I am stuck like this or will I get back to normal soon? Or will these feelings get worse as I go from 4mg to 6 and 8 and beyond? Or do I need to switch to another type of agonist?

Well that’s me – hoping someone can help. Regards.

#2
Hello John.

Do you have a PD nurse with a helpline number? If so, get on to them and report the meds effects. If not, phone the hospital for an earlier appointment with the neuro.

I take Requip 6mg daily. I don't recognise the light headed effect you mention, but one of the big things about Parkies is the huge variations in progression of the condition and reaction to meds. Let us know how you get on.

#3
Hello
I'm on the same med. as yourself starting with 2 mgs to go up to 3. Like you it makes me light headed,, plus nauseas plus head-achy.The one I had before Mirapexin was worse-I thought I was about to die. Does anything work or is it a case of working through the drug list until there's a fit?
Mary Owen

#4
John...
Sorry to hear your diagnosis. Like you I have early onset pd and found out in august aged 47. I'm on requip xl 8mgs daily. I have to say that when I was first on the starter pack they give you I had horrendous side effects. These ranged from stomach upset, light headedness and SEVERE nausea that within an hour of taking meds I had to lay down for an hour or be sick. I still feel light headed now and again but the meds out way that as I now can walk again and move my arms and get on with my life while the goings good. I still get days when I ask why me but it's here to stay..if u want to chat send email...Vanessa

#5
I had the requip starter packs and I was very light headed and my BP was very low.
I had to increase the dosage much slower than the packs suggested and that way I suffered less side effects.The doctor prescibed the individual pills and i choose when I increased, ie I avoided times when i was very busy etc This meant it took me about 4 months to get to 8mg.
I am now on the slow release which is much better and no problems with low BP.

Hope this helps.
A belated thank you to someone on the forum who told me to go straight to the docs when my BP was so low. I rang up first thing mon morning and asked for an appointment, none available, told them my BP and they found me a 9am appointment!!

#6
hiya john ,im ali,im 42 now ans been dx for 11 years,welcome to the forum ,good surport here,i hope to see u around x:smile:

#7
Hi John, I was diagnosed 7 years ago aged 40. have to admit ive had no problem with requip. before my meds were sorted correctly i did have some mobility problems but now apart from the fact I dont like heights would have no hesitation about being on roofs, I can do anything i could do before.

Craa

#8
Hi John Welcome glad you asked this because i was diagnosed about 1yr ago age 56 started on requip 2mg then increased nowup to 10mg which i am concerned about. I read other peoples story's and i wondered what drugs and how much they were on.It seemed to me that a couple of people said they choose not to take drugs yet i didn't realise we had a choice. I told my PD nurse this she said there was no way i must stop,she is pleased i joined the forum but told me everybody is individual.I am now worried about me because i seem to be on much higher dose than everyone else.Am at hospital on 15th but i think 10mg is quite high after just being diagnosed 1yr ago,anyway i don't have any problems with it i always felt light headed for years.Its the not sleeping that gets me down don't sleep in the day or night just a few broken hours.Doctors are worried am hooked on this laptop because you know with requip you are warned you can get compulsive behaviour i think they might be right Welcome

#9
dear hopefull
i was on 28mg of requip. people need different doses but i wouldnt assume 10mg is too much.

has anyone had ocd on 10mg?

#10
Hi Honest John
I was diagnosed just over two years ago at 47
Take 12 mg requip now . Have increased slowly from 4 mg
I have had dizzy spells early on but these went after a few weeks
Biggest problem I find is feeling sick in the mornings

Good luck

Kram

#11
Hi. I was diagnosed last Christmas after suffering very similar symptoms to Honest John. I was on Requip increasing to 14mls with little effect and am now on Mirapexin. Delighted this week to find at last I am walking quicker with less leg cramps which I hope is not just temporary and that the rest of my left side follows suit.

Stick with it and keep taking the Domperidone which is brilliant for nausea.:laughing:
but please HOnest John do not climb scaffolding if you are still light headed

#12
Hi I am on 10mg per day ( slow release ) did have to suffer lots of sickness and dizziness for a couple of months till settled on current dosage (diagnosed in March this year ).No sign of OCD and on reading loads of peoples "stories" I had the impression that most of the problems were on higher doses .

#13
hi keygirl

im recently diagnosed and on mirapexin only 260 mcg a day.got to wait another 2 weeks before doc ups the dosage,
do you know how long it took you to notice any difference in cramps etc
thanks
twins99

#14
Hi Twins 99. I started on mirapexin 2 months ago and am currently on 1.57mg increasing this weekend to 2.1 mg. I noticed a difference in my walking a week ago -my left leg being less painful and my daughter told me yesterday that she had never seen me walk so fast!

I hope this improvement will extend eventually to my left hand and arm which are very stiff and like yours cramp up. To look on the bright side my husband will have to write the Christmas cards for the first time! Although I am right handed my writing is so small and spidery its illegible.

Hang on in there - its what everyone told me when Requip had no effect.

Good wishes.

#15
Hi all; re medication. Are those taking Rquip also taking Sinamet Plus or other forms of Levadopa? I thought they complemented each other so am surprised if people are only on Requip.
I have slowly reduced my medication from being prescribed Sinamet Plus 1-2 tablets 4 x daily to half tab 4 times daily and requip 15mg a day to 8mg a day. I began to do this when I started to get dyskenesia (I have been on Sinamet for ten years, gradually increasing. Then I was prescribed Requip excel after being on 5mg Requip 3-4 times daily and automatically prescribed 16mg because it was not manufactured in a strength that could be made up to 15mg!
I did this without the 'permission' of nurse or neurologist (I never see the latter) but have always consulted the nurse or kept her informed if I have changed anything. It seems to work for me, but I wouldn't necessarily recommend it for everyone and of course its important not to ignore medical advice outright. But it's your body!

#16
Hi John, I can't comment on requp as never used it but I lost my arm swing for 5 years and held it like in a sling, like you said, couldn't even stroke the cat with it...now on mirapexin 2.45mg and arm completely within my control again. Some internal shaking and fuzzy headedness on and off first few weeks but nothing at all since. Thought would mention it as your arm obviously so vital for your job. Hope you can get some better results soon.

#17
Hi key girl
Thanks for the reply.im going to check out the local parkinsonsuk group on Monday to get some advice.
I'm really worried about the future and read on the net that the majority of pep get dementia after 65.my daughter
Who's in a wheelchair will be 24 but I still want to be there for her.i was told by the neurologist to take the tablets you've got Parkinson's and the nurse will contact you.goodbye next at.as you can imagine not even a phone call from the nurse..
So I didn't know anything about what causes it,why it happens,or even what the tablets did.
So I'm hoing to fill in the gaps at the meeting

#18
Good morning Twins 99.

Sorry to hear of your bad experiences with hospital. I have been very lucky with my Neuro And PDN. The best advice they gave me was not to read everything on line and frighten myself to death - just think you will be one of the Parkys who does not get dementia (I think you have gone through enough already).

Parkinsons UK produce a great range of booklets which give you all the info you need in plain language - their new one Living with Parkinsons - is particularly good. Email resources@ parkinsons.org.uk

Hope you find this useful. Best wishes

#19
I read that one in three PWP's get dementia which alarmed but then I read that one in three older people will get some form of senile dementia anyway and as most PWP's are older that would more or less explain it so I stopped worrying. You know the saying there are lies, damned lies and statistics

#20
Hi John I am on requip the starter pack did knock me about light headed, nausea and weight loss but it does settle down like you got messed around by GP and only got referred after a blazing row, he kept telling me symptoms were my age I was 48yrs but didn't get dx till I was 50, four years on now and life is good despite PD. Good luck to you mate hope this helps.