Hi. I've been on neupropatch for a while can't quite remember how long and on madopar but now I think the doctors told me to up patch each visit because I'm getting wearing off but it just doesn't seem to solve wearing off its just making me dizzy unbalanced slurred speech can't always sleep and I've fallen 7 times since the patch !
I'm now weaning myself of the patch from 12mg . Going down in 2mg each week but I still feel dizzy ect does anyone know abt weaning off I feel rubbish
I've phoned hospital today but gotta wait till ring me back to c if I'm doing it right x
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joe45
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At first the Neupro patch seemed the salvation I had much more energy, but after a while I noticed it had certain other effects which were not pleasant. I also came off them.
Madopar is OK, at least I have had no serious side effects, but this seeing things out of the corner of the eye (or even just seeing things full on) is something that continued after coming off neupro patch. I just stopped the Patch (no weaning) I was only on 2 mgm anyway.
I've had symptoms of PD since 1999, but untill 2010 all the doc ever said was Its all in the mind. I only went to the nurse in 2010 for a BP check when she could see I was not well. She got me straight into the docs, and few weeks later I saw the neurologist and got the diagnosis, now another neurologist thinks it may be something else, and I am waiting for a CT scan/dopamine transport test.
I take Madopar 125mgm x4 daily but not the slow release kind.
They seem to work fine, but as I have ony had Neupro patch I cannot compare to any other PD drug but I survive on it and that is all that matters to me.
Oh sorry thought it was the slow one , I have the dispersable but just tapered off neupro patch yesterday and since ive come off my legs Are weak and like jelly ?
Oh sorry thought it was the slow one , I have the dispersable but just tapered off neupro patch yesterday and since ive come off my legs Are weak and like jelly ?
Oh sorry thought it was the slow one , I have the dispersable but just tapered off neupro patch yesterday and since ive come off my legs Are weak and like jelly ?
You have made the first right step in contacting the hospital to speak to the specialists.
I have not heard of Neupro patches causing these effects but I suppose they could. Have you had your blood pressure checked? Perhaps they cause a sudden drop in blood pressure on standing like some other dopamine agonists can.
However, you were advised to increase the dose because of wearing off. Could wearing off be causing your falls? Try to relate your worst symptoms with the timing of your drug doses. That would help the clinician decide what is causing which symptom.
Wearing off can be treated by other combinations of drugs so Professional help is needed before you go much further.
Yeah I had blood pressure checked mines always a bit low , as to the falls no it's not due to wearing off it's when I'm on time and I feel so unbalanced / like vertigo .
I'd say the worst symptoms of wearing off are can't walk properly and rigid
I had no falls before patches and not so much anxiety either but I'm having hypnotherapy for that as I'm coming off patches x
They are dopamine agonists so don't withdraw too quickly. Good luck and I hope you get something that suits you to sort out the wearing off. There's plenty out there.
Hi. , Ive just spoke to consultant on phone they said to reduce by 2mg every 10 days , she said if I come off altogether my pd might get worse like more stiffness/slow. But I'm worse on them
In Parkinson's it is very difficult to decide what is due to meds and what is due to PD but I do understand that the patches do not agree with you.
However, the consultant gave you the advice to slowly reduce your medications for a good reason and he/she should be monitoring you carefully. Don't hesitate to contact them if you are having problems.
Oh good i haven't really had that bad side effects so far they didn't seem to think I was tapering of too quick just said maybe do 10 days not 7
Well, before I was dx they gave me citalapram cause they thought the symptoms I was explaining they thought it was depression but they was awful had such bad side effects at one point thought I was dying I'd never take antidpressants again obviously it was cause they were treating the wrong problem , doctors telling me my symptoms were all in my head . After i found out i had pd you should of seen my doctors face! It was a picture
I was also on 12mg neuro patch. I have gradually reduced the dose and am now down to 4mg (hope to be off completely soon). I also take madopar and azilect. For me, I have never noticed any benefits from having the patch. I sleep very badly and have dizzy spells. I was in Requip XL initially and had very bad side effects, that is when the neuro switched me to patches. Madopar has been my salvation but of course everyone is different in their reaction to the drugs.
Hi munningx what dose of madoper are you on I was changed from stalivo and consultant changed me 125 mg madipar 4 times A day the pains in my legs are worse 1hr before meds and 45 mins after and feel rigid I have rung my parkinson nurse,and she as
Put me on 5 doses 125mg madapar 1slow release.
madipar at night 1.57 premipexole and a0.26 have you had any side effects while being on madapar thankyou
I am on Madopar 125mg 3 x daily, Azilect 1mg and 4mg neupropatch. I find the Madopar suits me much better than Ropinirole did (which was my previous med). The things I have noticed since starting Madopar is a real tightening and clenching of my jaws and I am quite hyperactive. Also my left foot is now prone to curling under. The trouble seems to be, I find, with the professionals is that every symptom you relate to them can end up with the suggestion of an increase in dosage. I am trying as hard as I can to stay at the same , or even a lessening of meds. I do get pains in my arms and legs if I overdo it. I also find the the drugs effectiveness are not half as good if I am stressed. Do you take a lot of exercise? I find this helps with symptoms quite a bit.
Yes, I have had very bad anxiety also feeling very agitated. But my experience is that the dopamine agonists (Requip XL and neuro patch) are not for me.
Sorry, hadn't finished reply from before! Pressed the wrong key. I just can't see the point in taking medication that is giving me unpleasant side effects but no improvement in symptoms. I am now going down to 2mg and then come off completely. My Parkinson's Nurse says that I might not be aware of the benefits of the patches until I cease using them altogether. Only time will tell I think but I just don't think they are for me.
Hi , that's the worst thing anxiety I'm having hypnotherapy for it., is that the only side effects your getting coming off the patch. I'm getting like vertigo feeling and I'm unbalanced . Since I fell over last week I've got this fear now I'm going to fall again and I'm holding on to everything this is really getting me down cause I know I can walk round fine but I'm just so worried I will fall ., that's where the anxietys taking over !
I was feeling much like you are last year ( was at the time on Requip and then the addition of patches). I felt so unbalanced. The trouble is the mind can play tricks and the worrying makes things worse. I also had very badly swollen lower legs and feet accompanied by red blotches, not a pretty sight! I stopped the Requip and was put on Madopar. The swollen legs improved almost instantly and the madopar helped a lot to combat dizzy spells and movement problems. I think that anxiety can have a huge impact on parkinsons symptoms. Another side effect I think that is coming from withdrawal is nightmares. It's probably important to get the right drug combination for each individual and try to allay the anxiety as much as possible to help control symptoms. I do find exercise helps quite a bit and reading books and articles with a 'positive' outlook helps with the anxiety. I do wish you luck with the hypnotherapy as it's no fun feeling full of angst all the time.
Anxiety is a major issue with my pd and i know if I didn't have anxiety. I'd be much better. I go on my exercise bike everyday well try to and I've just got one of those bodyblades really hard tho but good results , it's for improving balance , posture etc .
I have a barbecue to go to this Sunday just family but even tho it's family I still get anxious cause if I got to get up I know I'm gonna struggle cause the anxiety takes over my body this is why I'm going hypnosis , I just want rid
Both melatonin and L-theanine are great sleep aids but for PD patients theanine may best help you to lower your anxiety. L-theanine is a non-protein forming amino acid in black, green, pekoe and oolong tea(s).
The good news is it is good for anxiety and Parkinson's disease. I often take 200 mg 1/2 hour before bedtime and it gives restful sleep. Here are 2 articles stating the merits of theanine:
My father has PD and I noticed how mediocre the therapy was and when I manifested symptoms of PD (I accidentally figured out I had PD by taking a tyrosine capsule for depression), then all the other symptoms diminished but did not disappear.
With many additional internet searches I am taking the following supplements for PD (and my symptoms are gone):
Tyrosine, mucuna pruriens
Magnesium chloride, Magnesium L. Threonate
selenium
Vitamins, B1, B2, B12, folate, C, D
Amino acids: acetyl l carnitine, alpha lipoic acid, N-acetyl l cysteine, theanine
My father is as well as can be expected for a 86 yo with Parkinson's. He struggles along.
Yes I take a lot of supplements but, if you add up the time it takes to swallow pills (or reorder pills), it takes minutes out of my day. What took so much time was to investigate which supplements to take.
Basically the approach is called orthomolecular medicine:
"Orthomolecular medicine, as conceptualized by double-Nobel laureate Linus Pauling, aims to restore the optimum environment of the body by correcting imbalances or deficiencies based on individual biochemistry, using substances natural to the body such as vitamins, minerals, amino acids, trace elements and fatty acids."
Previously I had an adrenal condition in which a orthomolecular doctor used vitamins, minerals, amino acids, fatty acids and trace elements to fix my adrenal gland. The lab that tested my cortisol levels wanted to place me on hormones forever. If you have an adrenal problem you are hormonally-imbalanced.
When I felt progressively ill from PD, I just applied the knowledge I learned from the doctor.
Parkinson's is a form of advanced aging and I just relieved many of the age/PD related deficiencies we suffer from.
I know exactly how you feel. In fact for quite a while I cut myself off from everyone. How much Madopar are you on? It will definitely be worth having a word with your neurologist or parkinsons nurse to see if medication can be altered to improve things. Body blade sounds interesting, will have to look up. I have just started a DVD exercise regime by David Sid (recommended from this site). It has balance and walking exercises. It could be that things will improve if your medication regime was correct which could hopefully get you out of the anxiety cycle. That's what happened to me last year. Of course everyone with PD is different and I am only relaying my own experience. I hope that you are able to enjoy the BBQ and that the weather is good.
I'm taking 50mg or if I need it 100mg but not together, the 50's only last 2 hrs and the 100's 3 hrs they used to last longer.
How much do have?
I'm seeing my consultant sep 3rd also I'm doing a study at the hospital for pd it's my last year been doing it for 3 so this time I've gotta have no medication when I go in that's gonna be hard.
Fantastic, that at least gives you somewhere to go with it all. Have you discussed Stalevo which is designed to extend 'on' times with L Dopa? Ask the consultant or PD nurse when they get back from holiday. I have a Parkinson's UK link here which talks about the different drugs and which does what. It might help if you don't already know what is out there for you.
I have also seen, but can't find, an anti anxiety medication which may work to reduce some motor symptoms on Parkinson's. However, if your anxiety is an 'off' problem that is probably where you should tackle it first. It's just a same the neupro patch didn't work out.
OK, I don't know how many people get over the sickness stage with Staelvo but it is something to ask the consultant. Sometimes meds take a while for the body to adjust to and you have to roll with it for a while. I don't know enough about it to add to that part of the discussion though.
Have you tried eating pineapple to see if that works to prolong the on time. Some people seem to get relief that way? There is another post on this site about that.
I am sure you are doing the right thing with reducing the dose of your patches but don't confuse anxiety from more off time with Dopamine Agonist Withdrawal anxiety. You will tell the difference by timing your worst patches and relating them to the timing of the next drug dose.
Do you get to a support group to discuss problems face to face with other people who have been through it all? If you are the UK there is a free Information and Support Worker in most areas who can come and give you non medical support and talk to your family members to explain what you are going through. Sometimes it helps if someone 'official' explains rather than it seeming like you making excuses.
Also in the UK there is a peer mentoring service run by Parkinson's UK. They try to put you in touch, over the telephone, with people who have experienced what or some of what you are going through. It is very confidential and you will initiate calls rather than them phoning you up out of the blue.
Dear Joe I was on the patch for 2 months and I felt my symptoms get really bad so I stopped gradually. I also got floaters in my eye. My eye doctor told me the fluid pulled away from the back of my eye. I didn't have this before I started the patch. I saw no improvement with them. Went up to 6 mg. I did feel really bad for a while after quitting (withdrawal? ). One night I could not breathe or move. Scary. Now I am only on the sinemet and feel so much better.
Dear Joe I was on the patch for 2 months and I felt my symptoms get really bad so I stopped gradually. I also got floaters in my eye. My eye doctor told me the fluid pulled away from the back of my eye. I didn't have this before I started the patch. I saw no improvement with them. Went up to 6 mg. I did feel really bad for a while after quitting (withdrawal? ). One night I could not breathe or move. Scary. Now I am only on the sinemet and feel so much better.
I'm scared of the withdrawal I'm doing it slowly tho , did u find that yr sinermet took longer to work when coming off patch ? Yeah I've got one in my eye floater ! How long till u felt better ?
My neuro told me to cut the 6mg in half to 3mg for 3 days. But I took longer and I still think that was too fast. Just go down slowly. It took me 2 months to get to 6 so how can 3 days be okay?
Joe sorry it took so long to get back to you. My phone doesn't work upstate. It took me about a week to get off the patch. But I think I had a bad reaction because one night I couldn't walk and couldn't breathe but much better now. Had pd for 3 years. Only on sinemet now 25/100 4x
Day. Need to get on something else/selegeline or azilect?? Need help in the night when I have to get up for bathroom. Anyway good luck to you. I'll write soon.
Sorry, never answered your question on meds. I take 125mg Madopar 3x daily, 1mg Azilect and of course the Neupro patch 4mg which I am slowly decreasing as discussed before. I asked to be put on Azilect as this med possibly has neuro protective qualities. By the way, don't know if you live in the UK but this heat we are having is not doing my symptoms any good. I don't know if this is a common complaint.
That's ok, thanks for replying , how long do yr meds last each dose cause I take a lot more I have 50's mainly but 100's when i need a bigger dose ., 50's last 2hrs and 100's 3 hrs I'm on 6 mg patch now so slowly getting there! Does Azilect deal with wearing off as well ?
Yeah I live in uk and yes I do suffer with the heat !!
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