Anyone out there ever got totally fed up ... - Cure Parkinson's
Anyone out there ever got totally fed up with meds not doing it for them/being swapped/upped/downed so just stopped altogether?
The question might be "is there anyone who dosn't get totally fed up."
About 3 years ago I quit all of my meds, at a doctor's suggestion (it was VERY difficult). About 6 weeks later I started Car/Levo, my legs weren't working. 15 months later I was changed from Car/Levo to Comtan. 3 months later changed Comtan to Stalevo. Hasn't changed for 17 months. 
As a relative,(2 year), newcomer in the world of PD meds, I still have hope of finding one or a combination that works. I have noticed with interest however that, by delaying or foregoing my mid-day dosage of ropinerole, it's possible to experience an hour or more of near normalcy, (no nausea, less fatigue, freer movement, less "other worldly" feeling) as the
early morning dose of Ropinerole passes out of the system. So far this seems to be a vote for chucking the meds. Before long however, the hand and jaw tremors start, restless leg and other symptoms return and it seems time to get back on the pill.
I am not yet ready to give up on the meds game, but certainly see your point.
Best Wishes
I'm in the same timescale as you, Ronn, but my Ropinerole is slow release 8 mg, so I can't skip a dose. But I have noticed that, if I am over an hour late, I start to "wake up" - it's as if I am looking through a cloudy mirror, and, if the meds are late, the mirror starts to change into clear glass.
If I am late with my other morning meds, (i.e. after about 6.15), which is the only dose in the day when I have some of everything (5 meds, total 15 tablets per day) then my nerves begin to"jangle" all over my body. The longer I am until I take them, the worse it gets. It's like that feeling you get when you are lying on the trolley before surgery, and the anaesthetic needle is approaching your hand.
When did they adjust adjust your meds? Mine is due at the end of next month.
Adrian
alllowercase, I am amazed to hear from someone whose experience with current meds is so similar to my own. Your experience in "waking up" as meds wear thin is what I was trying to describe.
I see my Neuro in mid Sept. I was planning to request a change to slow release Ropinirole, but am now considering keeping to the "three a day" regimen. (It's good to have control over something.) Does it mean you are doing something wrong if you are only "normal" when off your meds?
it's been 3 yrs for me and still haven't found the right combo/dose of meds to suit me. i take carbidopa/levo and mirapex every 2 hours and it doesn't seem to be working very well, if at all. i am at a loss and i think my doc is too.. part of me wants to cut down on my meds or discontinue and part of me doesn't. i don't know what to do anymore. sometimes i feel as though i am worse on the meds since i take so very often. i can't tell if the meds are making me feel this way or my disease is progressing, which it already has progressed very quickly in 3 yrs and i am only 43 I have a very hard time walking and am extremely off balance and sometimes i walk like i am drunk.. good luck to you
I started on a study drug about 18 months ago its carbidopa gel administered through a j peg tube,and it has worked great for me this has been approved in Europe for several years trying to get it approved in U S.my neuro Doc is over the study @ university of Ky.the only oral drug I take is mirapex @ bedtime for restless leg(.please excuse my bad spelling) I wish everyone could be on this medication hope it's approved soon.
Ronn
What I have done with my Ropinirole is stocked up just before Neuro-time, so that I have the choice of using either the old regime 4 doses of 2mg normal release or 1 dose of slow release 8mg. Or, for a quick fix, I just delay the slow release tablet. Normal time for this is 9 am, give or take 30 minutes, but I have lasted until 12.30 so far.
Where do you see your Neuro? I am under the University College Hospital in London. They are good, because they really listen, and if you have found an adjustment to meds that works for you, they note it for use with others if appropriate.
Good luck.
Adrian
Like I said in a previous post, I think it is a bit of a lottery with all these drugs finding the right one or combination I should think is difficult if not impossible.
My Neurologist suggested if you are waking early take your first medication in bed before you get up.
Personally, I have not tried it because I have to make myself get up, to go get that medication otherwise (as we say in Yorkshire. I maun lig i' bed all day!)
What scares me is not the medication, but what it is doing besides supposingly helping the PD.
I suddenly get a call from the docs to say after recent blood test my Vit D level is dangerously low and to collect medication take as directed.
That means another item to swallow. yet I am no wiser as to why it is so.
It seems each time I go for one of these full blood tests they come up with a new problem.
Diagnosed ''Gilberts syndrome.'' Then high blood sugar diagnosed as diabetic.
(I cured that when I lost 24 pounds) now Vid D deficiency.
It seems solving one problem causes another.
eebygum!
eebygum indeed!
It does seem a bit like 'try it and see, oops, it's created another problem, lets add more drugs and see what happens... oh dear, another problem created, time for more drugs'.
I'm just totally fed up at the moment. Partner doesn't understand, thinks drugs should just 'work' without causing more problems. Doesn't understand that I can't just switch off and go to bed when I want "you just need to turn out the lights and go to sleep" - I wish it were that simple!
So, in a fit of frustration/anger/depression, I stopped all medication last weekend - 14mg re-quip/stalevo/rasagiline/sinimet/sertraline.
Nothing noticeable at first but tiredness and tremors now kicking in. Harder to get up for work in the morning, which is ironic as it was much easier when I was sitting up crafting until 4 in the morning! Feeling pretty apathetic, can't be bothered to do much and do feel pretty weepy but don't really care!!!
Also harder to concentrate at work and I do find that I can't keep up so am working way past my 7 hours a day to fit it all in. Ok at the moment but when the kids go back to school it might be difficult (daughter starts secondary, year 7, in a couple of weeks and son moves to year 8). They both do a lot of sport which involves ferrying around in the evenings and at weekends. He pretty much can go by himself but she's still a bit young and public transport across London takes too long.
Have looked online and found articles about diet restriction helping in Parkinsons so think I'll give that a go. Can't do any harm, as one of the problems on the re-quip was night eating OCD so I could do with losing some weight (as my other half pointed out last week, during a heated argument on why the house was such a mess on his return from four weeks away!!!)
Anyway, rant over, thanks for listening, and hopefully the next post will be more positive. Got to go pick up the daughter from Grandma's in Bedfordshire and need to get the shopping in first.
If you need to rant and rave do it on here. I feel sure we are all here to listen and to help each other.
I think it can do us all good to see how other people cope. I really do admire you having to cope with husband and family and your PD.
Thank God I only have a dog and cat to argue with
Bugger the house cleaning, when the dust gets to half inch deep you dont notice it anymore.
kind regards and best wishes
oldtyke
don't forget that you only have until 31 August to get rid of the cobwebs. After that, you leave them so you can spray them with glitter and snow for Christmas. And if you play with lighting effects, the result can be awesome.
Adrian
And you need more than half inch of dust to cushion you whenyou fall
Sorry I dont do Christmas decor.
wait till there is a windy day and open all the windows to let all the muck blow out or back in as the case may be.
Wheer tha's muck tha's brass!
I hear you all. Oldtyke, wish this site had sound bites. I'd love to hear a Yorkshire accent. Yes, I'm always being nagged about the Vit. D. I take it and then I stop because I feel poisoned. I wish I could just sit in the sun.
I used to take a handful of vitamins daily. no more. now I'm racking my brain as to what and how to eat.
I woke up from emergency surgery after 2 days of no meds and had NO PAIN. But I could not stand up. I asked my neuro about going off them again, but he said no dice.
Check-out this site: fightingparkinsonsdrugfree.... The author, Howard, Recovered from having Parkinson's without using drugs. Since then two others have recovered. I am going to attempt it too since most of what he says makes sense. The biggest hurdle is that your symptoms will get worse before you totally recover. Involves lots of Qigong exercise and switching to a vegetarian diet. Also, must believe in faith of some sort, and that the body can heal itself. If it works, I will let everyone know...
my drugs 16mg ropinerole, 3x62.5mg modopar, 1mg rasagaline. i take it all in the morning with the exeption of modopar which is 1x 3 times a day. it was great until i developed swollen ankles and sore shins. i have reduced ropinerole to 12mg and am experiencig wearing off symptoms! ankles and shins are better. not thinking of giving up mbe alternatives to ropinerole.
Hi there, I haven't been in a while but am glad to read that someone who is having similar problems might find a fix for me. When I was diagnosed with PD in 2008, the Dr. put me on Requip, Zelapar and something for anxiety. Two years ago, I was taking 16mg of Requip XL and found I'd have these random,sleepy moments. I cut back on the requip XL to 12mg and started taking amantadine 3x a day. July 4th weekend, I started swelling in my ankles and lower legs. I finally got in to see my neuro in august. He knew right away that the swelling and weird circles on my legs was because of the amantadine. He cut me back to 2x a day. I have chosen to continue to cut back to one a day amanatadine. He also put me on sinemet 3x a day. I would like to know did your ankles every go back to normal? and what is Modopar? Is it similar to amantadine? Also, being on this medication I"ve really gained alot of weight (30lbs) (yes I hate myself.) I am curious to find if you found any other remedies for the swollen legs. Thanks..
Must be a minior miracle, but a low dose of Mirapex relieves all my PD symptoms. As for side effects, I take caffeine in pill form to counter the slight sleepiness, and pray to control the mild hypersexuality.
hello all - i am going to be going into hosp here in france for a drug holiday as none of the many different ones i have tried in the 2 and a half years have worked - so i may be findind out thatt i dont have PD at all but PSP Or MSA - so i am hoping it is PD as it i streatable but the otheres are not - obviously will let you all know xxx
Hi
Just wishing you luck with your drug holiday. I do hope things work out well for you. I have never heard of a drug holiday, but hope you get a good result. Gather you are back living in France. Think I remember you talking about moving to Wales.
Please do keep us posted. Will be thinking about you.
Sue
Gosh I have woke to read this post and am crying as I feel so so relieved as I am going through all this too.
I have had a total of 4hrs sleep due to pain, tightness, discomfort in my legs. GRRRR.
Nothing seems to work well same meds tried.
I am 39 years old and in 3 years I feel I have progressed as now I have bilateral symptoms. I feel I am running out of options.
I am waiting on a referral to Queens Square Neurological Hospital in London. I am hoping they have had more exposure to YOPD and can come up with some ideas.
Please lets keep in touch. xxx
