Not sure if they can measure the amount of dopamine, but they look at the transport of dopamine too the neurons, via a datscan.
i found my tremor didnt improve till i was on enough sinemet for me , which is 125mg 3 times a day .know when its working cos the tremor settles . but still have times when tremor bad all day , def affected by stress and tiredness
was told by my dr that tremor hardest thing to treat and to just accept i shake . its pot luck if meds help it
sinemet i recently found out is just another name for madopar,
you might find you need to up your dose or sometimes the meds work best if you take a combination i am on madopar and pramipexole i would suggest you ask your GP about upping your dose if your GP is not sure then ring your neuro's PA and ask them to speak to your neuro about it or if you have one speak to your Parkinson's specialist nurse.
best wishes BB,
Hi Autumn Leaves,
Hope you are ok.
I have now been taking Madopar 125mg since late Feb. At first it was 1 tablet 3 times a day, and now since late March i have increased (under the advice of my Neurologist) the dose to 2 tablets 3 times a day. Still, there has been no significant change, good or bad to my tremor. My tremor is mostly while i am at rest, I shall carry on this regime untill the next meeting with Neurologist (20 May).
Take care x
Hi BB
My dose of Madopar 125mg has been increased to 2 tablets 3 times a day. Still no change to my resting tremor, i shall carry on with this regime untill my next Neuro meeting in May.
Hope your ok
Mick x
Although, sinemet settled my tremor I was given to understand that I was lucky and that it is not known to be particularly effective with tremor where the person's PD is tremor dominant which mine is.. There are quite a few other meds they can try alongside sinemet unless of course you have other symptoms which indicated you are under-medicated. .
hi mick,
you are taking the same amount of madopar as me the only difference is i am on pramipexol as well i am ok on these meds your dosage might need adjustment let me know how you get on BB x
Hi Hawkeye16
I hope your feeling ok Hawkeye, & sorry your finding no change after the increase, but also pleased its not any worse. I am having a dreadful time of it lately. I won't bore you or any others reading with the details, but i'm becoming so depressed with it all, & if honest not feeling too confident with the support around me either. I saw my Nuro Con on 1st April, but it ended up really us discussing my recent stay in hospital.
2 weeks ago I have no idea what happened to me I just went upstairs & turned to go into the bedroom & that was it, my balance totally went, I couldn't walk, & wondered what on earth had happened to me!! I ended up in hospital for a week. I really wanted to spend most of my time with the consultant last week discussing my increase with the Madapar, as like yourself I was first put on 1 tab 3x a day & have been told to gradually increase it to 6 tabs a day which i've been doing. I must say though perhaps its just been a coincidence I don't know but since I seem to have increased my dosage I haven't felt so good at all. Very bad headaches, that just don't seem to clear. Constant nausea even with the anti sickness tablets! & feeling very dizzy & tired & quite disorientated
This could all be just a coincidence as said & the feelings all linked to something else but i'm definitely not feeling great at all. I have also noticed that since increasing them I am getting a slight spasm in my right arm. It only occurs of a night when i'm lying down. I have called my Consultants Secretary this week to discuss my meds (not just the Madapar but the tablet that the hospital put me on whilst in there for advice but am still waiting for a reply.
Wednesday I felt so bad I went to the pharmacy to get my bp checked as that has also been very low. (I'm told it can be a symptom of the Madapar & Pd?? the consultant told me to take lots of salt, use it on everything he said! I have, but as I felt really bad Wednesday & had almost had enough of things, so I went to the pharmacy to see if it was my bp very low & causing it. I found the pharmacist so helpful. He seemed somewhat surprised that i'd been diagnosed so quickly with the parkinson's & put on 6 tablets aday so early, as my only symptom really are more a balance issue.. I have no tremors as yet.
The pharmacy has suggested I just cut my tablets down to 3 a day & see if I feel better on them again & if so to stay on 3. If not then go back on the 6 & speak with the consultant again. He seemed to think that I shouldn't be experiencing such bad side effects after being on these tablets for 4 months almost. He said if your taking more then your system requires it could be what's making me feel so unwell. & making the bad heads & nausea etc far worse then they should be.
I have rung my gp today for advice about cutting the tablets down, as I don't want to just do it without being really sure i'm doing the correct thing. My gp has just rung me & agreed it would be a good idea to try cutting them down. & going back onto the 3 a day & see how I find things. I've decieded as I only uppted them to 6 from just over a week ago, I will continue the 6 for another week just to see how things go. if the same I will then go back to 3 a day.
I have read so often comments on here how once on medication you can feel so good, but i've just felt worse! I will let you all know how I get on.
Sorry for the long message, & sorry to have ranted on, but you all feel like good friends & its just nice to talk with you all & know your thoughts on things.
Mean while I hope anyone reading this is well & managing ok yourselves, especially you Hawkeye I hope your tremors are settling down more now they have increased your Madapar & unlike me your feeling the benefits from the increase.
All take care, apologies again for such a long message. & thank you for reading it.
Ps I just mentioned to my gp that my pharmacist seemed very surprised that I have been diagnosed with pd on balance symptoms alone. But apparently my gp explained that on the copy of the letter from my consultant it states I have a certain type of pd??? I don't have a copy of the letter myself, & can't remember the name of the pd the gp said either. I didn't realise there were types? I will have to call my pd nurse to find out more about it!
Best wishes all. Autumnleaves.
Autumnleaves
There is general PD known as Idiopathic parkinsons, then Parkinsonism which there are several types( Search Google ) My wife was on 3 sinemet for 12 months she has just upped it to 4 to see if there is any improvement if not then the consultant then said try 5 ! If the extra meds don't work then she could have a type of Parkinsonism . The medication for this is very similar she is going to see a different consultant 27th April and we will see what he has to say.
Billywhizz
Hi Billywhizz,
Thank you for your reply, its so much appreciated! I have found the side effects from the 6 Madapar just a fraction easier today. but still get a bad headache & nausea half hour after the meds are taken. & I need to take the anti sickness tablets a good hour before eating food. I would have thought after taking it for 4mths now i'd be over these bad side effects. That's what keeps making me feel am I on the right dose or tablet even! But i'm assured that my dosage is very low still. I just don't understand it, I haven't read of anyone else having such bad side effects for so long. Perhaps there are & I just haven't seen the post. I do find this forum some what hard to follow.
I spent a real worrying afternoon & evening yesterday after my gp telling me I have this certain Parkinson's I forget the name but it began with A. My gp seem tho think i'd been sent a copy of my consultants letter after seeing him xmas eve when diagnosed & knew about it. But no copy letter was sent to me, & when I had my first appointment to meet the pd nurse in feb she never mentioned it either so yesterday when the gp brought it up it was news to me. I googled it to see what it was about, & wish I hadn't as its upset & worrying the life out of me now. So i'm trying to put it out to the back of my mind & just hope i'm thinking & seeing the worse. My symptoms are just so slight so reading up on the type of parkinson's that i'm meant to have is hard to understand for me.
I know this Parkinson's disease seems a very difficult illness to get diagnosed & the medication correct but it can really worry you when thinking about it all too much.
I am assuming sinemet is a different tablet then to the madapar. I see you say your wife was on 3 for 12months. I was started on 3 then told to gradually up it from 3ady to 6aday over a month or so period. I have just last week started taking the full 6, simply because i've felt so bad with the side effects.
I do wish your wife well & hope she sees & feels an improvement. Thank you for replying its helping me to speak with others about it all. I will be glad when its Monday & I can hopefully!!? get in touch with my pd nurse to find out about this type of parkinson's that i'm told my the gp I have, & also why i've not been told of it before by anyone. I'm quiet upset by it all.
Take care Billywhizz, best regards to you & your wife.
Autumnleaves.
Autumnleaves
My wife says that you have to take each day as it comes. Yes look on the Internet but try not to dwell on what you may find.Worrying can only make matters worse. Be positive and keep up the fight
All the best
Billywhizz
Hi Billywhizz,
Thank you for your last message. I have thank goodness finally got my gp to listen to me & have had my medication cut down from 6tablets aday to 3. If honest I really wonder if I have actually been given medication to soon! My symptoms are quite slight, & although being diagnosed, i'm not a 100% sure I need medication yet!
I could be totally wrong of course, as i'm new to all this, having been diagnosed xmas eve. But what I do know for sure is I feel a heck lot worse & have more pd symptoms since being on medication then I did before! I have heard so many encouraging remarks and comments from people saying how they are still living a normal life style, or at least not allowing the pd to affect their daily life as much as possible. Well its totally the opposite for me! I don't feel the pd is affecting my life but the medication sure has!! I have hardly been out since the beginning of March, & have spent a week in hospital due to what the hospital Consultant said was a build up of a Crystal cluster in my head!?
I have been told that some pd medication can encourage this but don't know for sure. No medical person has mentioned it! In fact no one told me why I suddenly have this crystal problem in the head, just that it can occur in the head or the inner ear! I had both. It does seem strange that it hit me & I lost my balance totally, couldn't even walk & ended up in hospital, all this just after 4weeks of upping my medication.
I have dropped it to 3aday as said, but still feel just horrid most days. Terrible nausea even though taking the anti sickness tablets. Sleepless nights, short burst of flushing. Very depressed, headaches. Really bad back pain (probably due to me feeling so unwell & too much sitting around & not being able to be out & about) I have even noticed since being on medication that my speech is faster! None of these symptoms I had before the medication. I'm even getting slight tremors in my arm & just awful weakness. The tremors are again just since the medication!!
I am hoping things sort out soon, the pd is hard enough to cope with & getting use to the diagnosis, but the medication should I would have thought made life better not worse for you! Its been 4 months now since starting it so I would have thought i'd be use to it by now! So many of my friends keep saying I guess you have been diagnosed correctly!! But of course I believe the Consultant must be correct, I just want the medication sorted out. Knowing your going to wake up each day, restless, tired, sick & awful weakness with now chronic back pain day in day out is just not nice.
I do & will try to be positive though, I think we have to don't we! I am considering seeking some private treatment for my back & ease the headaches, but its so expensive today! If it will help it may be worth it.
I see on my account it says I have 4 new post, but typical me I can't still understand this forum set up so can't find any of the post other then yours posted 12th April. I wish the forum was easier to follow!
Take care Billywhizz & I am hoping this post finds your wife & you coping ok.
Best wishes Autumnleaves.
Sorry too hear your not having the best of times autumnleaves. i also suffer fatigue but i think it's in a cycle of time i had it way before i was aware of being ill, it goes a for a while and then returns with a vengence, there are days when really i can do nothing at all, i make use of the days i feel well enough to do something too a plan,how ever short that is, but i also seem too pay for that on the following days.
some exercise but mindful not too over do it.
When i first saw the neuro he said he thought i had various problems but at the core was PD, i'm wondering if that's the same for you??. what ever it maybe as well as PD if it hasn't been investigated muddying the waters so too speak with your head aches/ear crystals ect making it seem like the PD medication isn't feeling as effective as it should be ??.
i have 130 odd new posts when i log in, nothing new
My wife and i went to see a consultant neuro today my wife explained that she is taking 4 sinemet a day 1 every four hours, but she now feels the tabs wearing off before her next dose.He has put her on rasagiline 1 a day, rather than upping the sinemet. Fingers crossed this will help.......my wife has not had many good days lately
All the best to you all
Billywhizz
Hi Betty
Please PM me re Sinemet and Madopar
Regards
L
Hope the new medication helps your wife's symptoms Billy Whizz and she starts to feel better .
Hi Billywhizz,
I'm sorry to hear your wife hasn't been having a good time of it lately. I know the feeling, possibly I am not struggling as much as your poor wife as i'm on a much lower dosage of medication. If honest I felt better before medication was introuduced! Or at least I think I did!! It all seems such a long time ago now, and it isn't really. I was diagnosed Xmas time, it just feels like ages ago as since then my life's change & my health been worse.
Very best wishes for your wife, I hope each day she starts to feel much better and the new medication helps her a lot.
Best wishes to you both and take care Autumnleaves.
Hi Sea Angler,
Thank you for your comments it always helps us all to read what others say or are thinking. I think you could be right about me, I have other things going on to which a long with the pd just add to extra things happening.
I think I may have found out why the past 2 weeks have been so dreadful though. "Cutting down medication to quickly"!!
As i've been so unwell & going down hill fast my son was worried and emailed my local pd nurse. He explained that since upping the doseage of my Madapar (which is still a low dosage i'm on, im told!?) I have become increasingly unwell & not good at all. Even losing my balance badly and ending up with these crystal clusters in my head which ended up in a 5day stay in hospital. My son asked her if it was possible to go back right to the beginning of how my treatment was when first diagnosed 3 Madapar a day, as that seemed to work better for me! (I still preferred it before any meds, but there you are. At least I coped sort of on the 3!) The pd nurse said yes I can but it must be done gradually stopping 1 tablet at a time and leaving a good 5 days in between before stopping the next. What my son didn't realise was I had already cut the medication down to 3 a day from 6, but done it in one go! One day I was taking 6 tablets the next down to 3!! I didn't do this off my own back, "I wouldn't", I rang my gp and he told me to do it like that!!
I have been baffled as to why i'm still feeling so unwell and able to get out or do much seeing as i'm now on the 3 tabs like I was at the beginning of diagnosis , obviously I know now why, my head has probably been shocked into going from 6 to 3 over night! The gp should have told me what the pd nurse told my son to do it over a period of time, very slowly!!
Just shows you you do need to be careful! In future I will try to speak with my consultant (although that's not always easy) and his secretary isn't always there. But I will go down that channel of him or the pd nurse or even a good friend on here, who I know would always help me with advice, and good advice at that.
Hopefully each day my body adjust to the new dosage I will settle down again. I am starting some therapy this week called CranioSacral Therapy & Myofascal Release. I hadn't heard of them before but have a qualified therapist coming home to do it. So will see how that goes.
I hope your keeping well Sea Angler, and thank you for your post. Autumnleaves
PS I have just had a large box delivered and just lifting it and trying to open it, then giving up as can't! So have dragged it into the porch for when I feel stronger. I now feel really breathless and palpatations and my right hand is shaking! Not badly, but typing this my thumb and small finger are! This is the major thing i'm finding none of this was happening to be December the 24th. Its all kicked in since being told i've pd and put on medication for it!!? I do hope i'm right to be on meds??? and they not causing me more problems then doing good! You take care, and everyone who reads this. I feel I will be messaging a good friend on here soon for advice! !
Hi
I'm sure the slow change is the best Advice.
My Gp although PD isn't at all his speciality gave an analogy "it's like making a cake we add in and take away ingredients slowly and carefully until we get it right", Right now perhaps 3 a day is right for you and that is what your body is perhaps telling you??, with some further advice i'm sure there are other pills in small doses too make it just right if needed, for you right now.
Hiya sorry to butt in on this thread, I am looking for advice on madopar.
my husband was diagnosed on Friday with early onset Parkinson's, it did not come as a surprise to either of us as we had done a bit of research due to the fact his symptoms were very obvious, he had become very slow and stiff and his walking had become very unusual, my question is... They have put him on a small dose of madopar 3 x a day, is this unusual to given at first or is it the best ones to relieve his symptoms? I am scared putting him on it so early shortens the effectiveness earlier.