New Diagnosed: Was Diagnosed on the 3rd nov... - Cure Parkinson's

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New Diagnosed

24 Replies

Was Diagnosed on the 3rd nov 20011, after some months of beeing treated for a stroke , i live in Glasgow Scotland and dont know a lot about Parkinson's, i shake every day and feel sick all the time , i am on the requip starter pack, can anyone tell me how long the feeling sick will last.

Regards

Alan

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24 Replies
shasha profile image
shasha

hi alan - i am sorry to be meeting you here but it is such agreat site - you should ask your dr for some DOMPERIDONE - THEY are so good - and stop you feeling sick the whole time - are you under a neurologist or just your gp ?

Hi Shasha,

I am taking Domperidone 3 times a day , without any effect, i am under a neurologist , and also the Parkinson's support group near where i live in Glasgow,

thanks for your comment

regards

alan

shasha profile image
shasha in reply to

poor you then - i should have a chat with you nurse or neuro - used to live in kInloss on the moray firth and once owned a house in Portknockie- so i love scotland very much xxx

jillannf6 profile image
jillannf6

Hi alan

I have PSP( A rare form of parkinsons) and am surprusie your neuro has not suggsted sinamet or amantadine )usually halpful fo rParkisnosn in hte early months / years

take care

love Jill

PS the Parkinsons shypport groyups and Nurse are v good = v positiive /upbeat adn concentra te on what you CAN DO !!

Sassynailart profile image
Sassynailart

Please describe what you mean by " feel sick."

feeling sick (nausea).when i eat i feel like througing up as i did last night

MichaelOM profile image
MichaelOM

My 2 cents ... Requip was the first drug I was given too, and I had a lot of problems with it, including stomach and bowel issues. Ask your doc about alternatives. Also, if your doctor does not specialize in PD or movement disorders (mine didn't), you should find one who does. Good luck.

Susie01 profile image
Susie01 in reply toMichaelOM

Requip did absolutely nothing to stop my tremors I know some people my differ from this, but I was started on Azilect. My mind began to clear and the tremors were less within three days of starting it.

I still have a noticeable tremor in both hands, but nothing like it was!

Azilect is very expensive, due to my situation, I get it for free from the manufacturer. I still have that dizzy feeling a lot. I cannot bend over at the waste or even knell down without my head swimming and loosing my balance. I drop things a lot, my kids now just automatically run to pick things up for me!

Some folks with PD will have these symptoms due to changes in blood pressure. Mine has been very high and very low. I have a blood pressure monitor so I can check it frequently. I have noticed it being very low when my head is really swimming. I can usually feel it before the bad tremor episodes start, both my blood pressure and heart rate will go up significantly. I have been able to lessen the time that the severe trmors last by taking additional BP and PD medication.

Please note: I am a nurse and my physican gives me a little more latitude with the BP meds because he knows I monitor it and have knowledge of how the medication works. It might be different with the average person.

I feel for anyone diagnosed with this disease, I am still trying to find a balance of how much activity I can do without being real symptomatic!

Hikoi profile image
Hikoi

Hi Alan

Sorry you are having a rough time. Requip takes a while to get used to. I would take it very slowly.

It helps to take Requip with food and you could also take the domperidone half an hour before the requip. I am not sure about Scotland but do you have a Parkinson's Nurse in your area, you could contact for advice? The helpline for Parkinsons UK is very good too. 0808 800 0303. Best wishes

in reply toHikoi

Thanks Hikoi,

I have a parkinson's nurse , ill give her a call in the morning

NanCyclist profile image
NanCyclist

Two things:

Ginger chews are a godsend for nausea.

pedalingforparkinsons.org will show you a light at the end of the tunnel. I'm 66, climbed Mt. Kilimanjaro last summer and am cycling at 80-90 rpm as I write this.

in reply toNanCyclist

Cheers for that

Susie01 profile image
Susie01 in reply toNanCyclist

Wow, that is awesome!

soup profile image
soup

Hi, it is a shock isn't it!

My husband was put on ropinerole 3X day until they got his effective level worked out. He felt sick on that and we were always tied to finding food at the right time to combat the nausea. Once the right dose was discovered he was put onto Requip XL, the slow release version, and all that died down.

It's early days for you yet and PD medication is a bit like a juggling act. Keep tossing the balls and you'll get there. Make sure you have a Parkinson's nurse contact as well as regular visits to the Neuro-consultant. This stage cannot and should not be managed by just your GP. The Parkinson's nurses can adjust medication or recommend adjustments to your GP or consultant and you wont have to wait for the next appointment with the hospital.

We found the Parkinson's UK website full of excellent information and they have a help line numebr and a telephone nurse to give advice. (Ginger and lemon tea works a treat too.)

in reply tosoup

Thanks , i will phone my parkinson's nurse

What does On/OFF mean i have seen a lot of this in articles

soup profile image
soup

Hi alsh59,

Because Parkinson's medicine is often taken in separate doses during the day (Some are slow release and others are patches which do not always follow this general rule) the level of drug in your body goes up and down. It goes up after the drug is taken and it might take a while until it reaches the level in your bloodstream which is the ideal one to counteract your symptoms. When the drug is at its ideal level in the blood your symptoms are controlled well. This is the 'on' that people talk about.

Off is when you are not at the effective level, either because it is too soon after taking the drug for it to have got up to the correct level or once it begins to drop down below that level before you can take the next dose.

Part of the juggling act is to keep the drugs at the effective level without shooting up too high or dropping down too quickly.

Its good that you are asking the right questions. Keep on with the juggling..

Dennis profile image
Dennis in reply tosoup

This was most helpful for me. I am stil juggling :(

alanrob profile image
alanrob

hi alan, i live relatively close to you,i,m in the scottish borders (kelso),i too have a bad tremor confined to my right hand and arm at present,have the neuro and pdn told you anything about support groups in glasgow,i wasnt sure about getting involved at first but now i find them very interesting and informative,by coincidence my name is also alan and is the 59 in your nickname the year you were born?if so thats the same as me too!!!

in reply toalanrob

Looks like we both have the same right hand and arm tremor and yes i was born in 59.

I have all ready been to the support group in Glasggow it is at Lightburn hospital which is only a few miles from my home .

take care

regards

Alan

alanrob profile image
alanrob

i seen the consultant neuro at the southern general a couple of years ago,dr grossett i think it was,i,v had pd for 8 years now,was diagnosed in 2003,

regards

alan r

Lionel profile image
Lionel

Alan,

speak to your consultant and/or specialist nurse and ask for a change in medication. If nausea persists after a fairly lengthy trial then it probably will not go away but there are quite a few alternatives to try. A friend of mine was started on mirapexin but after several weeks of vomiting was switched to ropinerole which worked fine. I was a mirror image of that, started on ropinerole and much sickness later tried mirapexin which worked for me (in conjunction with sinemet of course).

Living with constant nausea is a part of breaking in to constant drug use but after a short while it should die down, so ask to try something else and sooner rather than later you will eventually find the best drug regime for yourself BUT this will gradually change over the years as you change, unfortunately hitting that sweet spot in life where it works perfectly is a slow moving target that we all have to try to keep up with and as Parkinson's is unique from one patient to another so it is likely that the answer for your treatment and lifestyle will be unique to you. Good luck!!

Apologies Alan I would like to respond to Nancyclist's post:

Yes Ginger does help a lot

Yes exercise is essential to enhance motor function

YES! Climbing that mountain physically is amazing, and speaking metaphorically I bet as you climbed you trampled over all your fears, anxieties etc. that Parkinson's can bring - maximum respect to you for your accomplishment sir!

in reply toLionel

Thanks Lionel,

going to see the doc in the morning

FionaG profile image
FionaG

Hi Alan,

See Ian for the cycling!!!

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