I feel levadopa is not working for me and making me worse. If I ask to come off it will I have to go into hospital?. I have probable cbd.

[CheekyChops1973]

Hi everybody . I have heard from a lot of you that levadopa has not worked for you and I feel this is happening to me . I have had nearly 24 hours off it today and my mood has been lighter with less spasms and pain . I just feel this drug puts my brain into a fog and I can't organise my thoughts etc. Would like to hear from sufferers and carers who have come off l dopa ! Thank you in advance . I am seeing my neurology nurse tomorrow and definitely want to put the above question to her. Just been substituting levadopa with paracetamol today . thanks

[anniemay]

Hi, I can only tell you that our experience was immediate improvement on stopping levadopa. The specialist nurse did a test to "prove" that levadopa was helping - my husband got so ill that she had to stop the test less than half way through. Then was put on amantadine and also improved when stopped taking it. The side effects of both are similar to the effects of the illness, so difficult to know which is which until the drug effects are out of the system. Tom stopped taking both abruptly and with no ill effect. To say that you have to be weaned off them slowly has not been our experience. Tom now only takes painkillers and amantadine drops under the tongue to control saliva. He is better now than he was 5 years ago, both mentally and physically. I know he is lucky in the context of the general prognosis for the illness, but for us its working!

best wishes, Ann

[CheekyChops1973 in reply to anniemay]

Hi ann .

Thanks for your reply . neurology nurse practioner thinks I am having l dopa induced dyskinesias and dystonia in my foot but she can't do anything without speaking to the neurologist first . but she is going to get in touch with me soon . in the meantime I am just going to take two stalevo pills a day and see what happens . have been so uncomfortable over the last few weeks and its been worse since ldopa dosage was increased !

Thanks again for taking the time to reply to me . much appreciated.

[anniemay]

Sorry, I meant ATROPINE drops under the tongue, not amantadine!

[jimandsharynp in reply to anniemay]

Atropine works for excess saliva build up some say. Fortunately my dear Sharyn didn't have saliva build up. Not every patient has every symptoms and when they do it may be at a different level than another patient. Our neurologist said to not over-use Atropine because it stimulated the heart. Ok to use if needed but don't over-use he said. Jimbo

[jimandsharynp]

Being on carbadopa/levodopa should have nothing that would put you in the hospital. It's good you are getting off the drug if it isn't working. There are some terrible long-range effects with that drug. I'm afraid your "fuzzy" head and dizziness and balance issues are part of the disease (CBD and PSP) and may not be correctable from what I've read and what my wife experienced. I'd tend to not take any drug that doesn't improve my condition. Some symptoms just aren't fixable for some patients when dealing with these diseases. Every patient is different in some respects also. I would say that whatever drug is recommended you Google it and find out what it's original intent was, side effects, and down-sides. Best wishes! Jimbo

[cabbagecottage]

Are you sure you are not talking about my husband lol..

I have said often enough that I thought the meds were not suiting and even maybe making it worse . He has been taking Sinemet along with the patch although two months ago replaced the patch with Roprinirole .

The consultant kept sayiNg he was doing good , I tell him he doesn't come home with us .

John seems to get sensitive to many meds they can cause hallucinations

the GP has agreed that he ceases taking the Roprinirole in one fell swoop I was worried . so far no advers affects but he is mentally much improved also his compulsive nature seems to have dissapeared .

He drools dreadfully so is tomorrow going to try the Atropine will let you know how it goes . I asked his Parkinson's nurse what would happen if we stopped the Sinemet but she has frightened me saying it could make him even slower and affect his swallow causing pneumonia. My gut feeling is she is wrong .

[anniemay in reply to cabbagecottage]

Go with your gut feeling, you can always start it again if you are wrong. Our Parkinsons nurse was similarly insistive that stopping Sinemet would be catastrophic, but 5 years on Tom can still eat and drink anything, still problems with saliva and thick mucus in throat which can cause choking on liquids, but he has actually got better at coughing it clear. I think the brain can be re-trained to do things in a different way and we are trying to do this with small successes!

What we found at first was that each new medication went through a "placebo" period, where he so wanted it to work that it actually seemed to, but by the end of about a month there was no improvement and the side effects increased. Now he is more resigned to the fact there is no "magic pill" and if after 3 - 4 weeks there is no benefit from a medication he will not continue with it. Most important is to keep up strength in muscles through exercise and stimulate the brain on a regular basis - Tom plays patience (Solitaire) on the laptop, it takes him ages because his eyes keep closing, but keeps his interest at his own pace. Also have projects, outings and visits to and by family and friends to look forward to. Listening to local radio and TV also keeps him in touch.

All the best, Ann

[CheekyChops1973 in reply to anniemay]

Hi Ann,

Yes going to have to go with my gut feeling on this one and i hope by just keeping a smaller amount of l dopa in my system - this will be enough to stop me going into 'neuroleptic malignant syndrome' which my neurology nurse warned me about .

Feel a bit cheeky asking you this but does tom have cbd or psp ? I know these conditions are very similar .

This forum and the people on it are a lifeline to me and thank god I found it when I did !!

I find sometimes my right eye closes briefly especially when I'm trying to concentrate on something and I have a wordsearch game etc on my I pad which I do sometimes .

I wonder sometimes if I went into that placebo period when I was first put on sinemet and I so wanted it to work but in hindsight I think I was clutching at straws.

My neurologist had called and said " are they working" and I said yes but nothing majorly different was happening - that's why I was changed to stalevo 125mg four times a day .

Thanks so much Ann - Ryan

[anniemay in reply to CheekyChops1973]

Glad to be of some help, Tom was diagnosed with psp but is not typical so not really sure, seems symptoms all cross over and a diagnosis is just a label. Keep positive and go with what suits you!

regards, Ann

[cabbagecottage in reply to anniemay]

How old is your husband Anniemay John is eighty but diagnosed at seventy , of on reflection had been struggling for a very long time . Struggle is how he has always described how he feels .

He has been house and chair bound for two years now . I have all the aids we need , Two carers night and morning but mainly just to hoist him in and out of bed . In fact I normally get him out on my own ready for them .

Getting in is a bit more difficult for me . I don't want to hurt myself .

Apart from Atrial fibrillation along with the Parkinson's he is pretty good health wise . He does seem to be sleeping more though since stopping the Roprinirole . He is down to three Sinemet110 at present .

[anniemay in reply to cabbagecottage]

Hi, Tom is 76 and was wrongly diagnosed with Parkinsons 10 years ago, then psp 3 years later, but he had symptoms well before that. He is still mobile with walking frame but needs a wheelchair for any distance. Can't safely operate one himself due to eyes closing, but healthy in himself and keeping positive. Just takes a long time to accept that life is different when always been super fit and healthy! I still manage on my own, for how long I don't know, but we have things well worked out at this stage for his moving around the house as easily as possible.

regards, Ann

[cabbagecottage in reply to anniemay]

We live in Swales GB where are you

[anniemay in reply to cabbagecottage]

we live near Cardigan, W Wales

[cabbagecottage in reply to anniemay]

Nice area , . I expect you are also having this lovely weather

[cabbagecottage in reply to anniemay]

It's good he realises that he isn't safe to use a motorised chair . Johns brother who is 87 uses one and I don't think he isn't safe to do so . A half brother wo also has Parkinson's

[anniemay in reply to cabbagecottage]

It doesn't register that he is not capable of using it, although he crashes into things around the house. I just dont take it with us any more, have explained that he'll be sued for injuring people and he accepts this now, unlike when he was on previously mentioned medications when he would have vehemently opposed the suggestion

[cabbagecottage in reply to anniemay]

Do you find him less impulsive since coming off them . . John accepts everything I ask of him , fortunately . sometimes if he retaliates I shout yippee , the old John is still there

[anniemay in reply to cabbagecottage]

still impulsive but easier to reason with, which is much better for us both! He is still the same in his head and its important to keep that as long as possible to keep away depression.

[wifemo]

Hi Cheekychops -

Tony's experience was just the same, in fact, after he broke his hip and was discharged from the main hospital to the local community hospital to see if rehab would help.

Some "neurologist" prescribed Madopar, with a note that "has had an adverse reaction in the past" - the Comm.Hosp. were not told to monitor, I didn't know he was on it, and the local doctor assigned to the Comm.Hosp. didn't know his history.

For a week Tony was on "planet zog" - being aggressive (not him at all), climbing out of bed (they had to trial a special bed that lowered to the ground), ended up in A&E when he hit his head etc.etc.

As soon as I realised the problem, asked for him to be taken straight off, and within a couple of days he was coming back to us.

Challenged the neuro clinic consultant later, but just received a "ganging up together" response. Didn't take it any further because it wouldn't have helped Tony as we had sorted the problem ourselves (as usual?)

In the end Tony was only on Baclofen (to relax) and Movicol. At one time he had been on Pramipexole and Trihexichloride but they didn't seem to make any difference, so were stopped.

Best of luck in sorting out what works for you.

Mo

[CheekyChops1973]

Hi mo.

Thanks for your reply !

Went to see neurology nurse practitioner today. She is almost sure that it is the l dopa ( stalevo) giving me l dopa induced dyskinesias and dystonia.

She is going to have a word with my neurologist and get back to me on how to proceed .

I also take baclofen as well which helps I think . I have been feeling so grumpy over the last few weeks and I think its down to l dopa . nurse said though that I mustn't come off it suddenly but I have only had two tabs today ! I feel as if I can't keep doing to myself anymore . think I will continue with two a day for the time being .

Thankyou so much again. Ryan