nickvalo,


About 3-4 years ago, my mom started showing classic signs of PD -- one of them being the bradykinesia along with the blank stare. She was diagnosed with PD and started with way too much Sinemet (600mg/day) ... she developed dyskinesia, then cut back to about 400mg/day ... still had dyskinesia, and now (on her own, not doctor's orders) has cut down to 100-150mg/day. She takes that dose to get a boost but then can get through the rest of the day at a lower energy and more slow motioned pace. I also feel like she has withdrawal symptoms every day ... when the 150mg dosage wears off after about 3-4 hours.

It is pretty normal for a dose to wear off in that time. If it helps your mom kick off her day, shouldn't you be thinking of that. It is hard to get up and get going after a night in which maybe she does not move much. You have to weigh everything up. If there is benefit there, then it is working for her.

You seem unsure whether her symptoms were there before Madopar, though you describe the slo-mo bit well.

The biggest problem with these medications is doctors prescribing too much too soon. If they are now helping her at the dose she is on, then it is likely she has got some parkinsonism. A lot of how well they work is down to how they are absorbed and transported to the brain. If they are not getting there doses get upped to get a better response, not always the best thing. It is better to look at why the response is not so good, and try other thngs before going up. Like is she having a protein rich breakfast right after her meds, or does she has some other condition, or taking stomach meds that might affect absorbtion. On the other hand she got a better response to sinemet so maybe it is formulated better for her.

You don't mention a neuro, or a nurse specialist. Though some of the drugs you have listed in your poll can give these effects, I am not sure that is the right mental leap to take. If she were my mom I would want to take her for another opinion, and to discuss these issues with both doctors. And listen always to what she has to say about it, she may not remember what she was like before, but she will know how she is feeling now.

I ordered the book, thanks. We'll see what it says in a few days. I go to my neuro this week with many questions.

The doc has asked I not reduce sinemet further until I finish the next phase of ongoing divorce. I seem not to be consciously bothered but I'm having nightmares about ex so obv I'm stressing. I started getting diskinesias again in the evenings after 3 weeks at this reduced level. Backing off 1/4 of a 25/100 sinemet brought back the debilitating cramps, hip injury flared again, knee kicked back up, and NO work on the computer except one handed sitting on other hand. The high wavelength jackhammer tremor returned. So I'm stuck for now but at least mostly comfortable and MUCH better on much less sinemet.

I do have great worry about his plan to detox me in hospital in a week. This seems to be very fast and not sure he knows how to treat/support DAWS in a full fledged mode. It is very attractive to get OFF in a week but I want to live through it. I did insist on some kidney and liver bloodwork to be sure I'm not having DAWS symptoms he's not picking up on. Should have results in a week or so.

There is much good info in the old posts such as activity that promotes dosage becoming effective faster by relaxing instead of continuing to type or do fine motor things. Thanks to everyone in these posts. No docs ever mentioned any of this stuff.

Read with great interest the post from lou lou about stress and PD diagnosis. It read like my life and medical history down to the dehydration resulting in injury to my eyes and gastrointestinal breakdown that they never figured out but that previcid seemed to control. I think there is much to be said about living life at such high stress as I did during abusive marriage. My mom mentioned a friend dx'd with MS that was MS free after the divorce. Now she mentioned tonight that her type 2 diabetes manifested shortly after my dad's surgery for prostate cancer.

If we never get to a normal de-stressed hormone level for an extended enough time we ever remain at some heightened fight or flight adrenal level. Even when enjoying something fun we never get to a healthy level to start healing or being normal because the background static high normal hormone stress takes months to decrease to a normal level and allow our bodies to compensate and become normal again. It makes me wonder how many people are very misdiagnosed with many things just due to the lives we live at to high a price before we put the pieces together and realize the cost.

I've renewed my commitment to meditate daily again. That always helps with the stress. A three year divorce does not but then when he won't quit I have little choice on that matter. The legal system sadly provides no help for the sick or disabled I found out the hard way. ADA? What's that?

I've made appointment with two other neuros with very good records in treating mis-dx'd people so I'll at least have more input shortly. I'm betting the other doc is right on my stress level tho. Too much too soon-too stressed doesn't make for good detox.

http://www.blog.parkinsonsrecovery.com/

this post says a year or two to get off sinemet which makes me more sure that a week in the hospital would be dangerous. Since most people die of DAWS due to inappropriate treatment in hospital I am worried. While it doesn't seem necessary to compound the meds when I can break pills there is some good info on this link and the site.

dOgma

I followed your progress with withdrawl from sinemet with great interest.
Has there been any changes in the last six months?
Thanks for sharing your horror story with us all.
I hope you are doing well.

Hi everyone
My name is Candice I am 64 and was diagnosed with PD last November ( so shocked) and imediatley put on Akinetone for tremors in right hand, and referred to a neurologist specialising in PD, who confirmed it was by telling me my right arm did not swing.
the akenitone helped a lot, but didnīt stop them. Neurologist put me on a small dose 0.25 mg of Ropinorol 3 times a day. I didnīt notice any difference, in fact i was getting worse.

My GP then decided to put me on Sinemet I only took one tab and was rushed to hospital suffering with anaphylictic Shock a very bad alergic reaction. GP then gave me 2 weeks grace and decided to start me on Madopar, I was like a zombie and symptoms where getting worse I was falling over all the time, so what did they do but increase the Madopar x 2 .
A close friend who had been away on holiday on her return had a shock to see me so poorly. I took it upon my self to stop the Madopar and after 3 days I was back to my normal self.
GP decided i needed to see neurologist again and who said I was suffering from parkinsonīs very mild and I hadnīt got any worse than when he last saw me, even though I told him I felt a lot worse and now my legs had the tremors.
He decided he needed to double the dose of Ropinerol to 0.5mgs 3 times a day.
I have had 2 falls this week and have taken it upon myself to come off the medications by missing out the morning dose 1st day and both morning and afternoon dose second day today will only be taking the night time dose. I canīt believe how much better i feel already , so today I will reduce the evening dose and see how I am tomorrow Sunday.
I will be seeing my GP next week so will let you know How I get on.


Or I have been wrongly diagnosed as most of you seem to be doing quite well on medications.

I am only writing this on the forum as it looks like some of us either havenīt got parkinsonīs or Drīs seem to be prescribing medication to soon.

I also suffer from Spinal Stenosis and am Taking Carbomazipine, Amitryptiline, Lyrica and Arthrotec, dol-u-ron at night and can take during day if needed,neurologist wants me to stop taking Carbo and Amitryp and has put me on a 45 day reduction programe for Carbo, now 15 days into it and my Sciatica is back, but will persevere with as long as I can, He did say we can up the dose of Lyrica if needed.
I feel a lot better since I reduced Ropinirol.
I am on day 15 of the 45 day Carbo program, then i will go on the Amitryp one.
I have been on these for 20 years and have stopped drinking Alįohol which I always had a whisky at night,
I havenīt had any alcohol drinks now for 2 weeks and havenīt seen any difference, but will stay off drink for ever if I have to.
( I have found it easy to give it up) and now drink apple juice when i go out socialising)
Neurologist has said the Parkinson meds are mor important than the stenosis meds, not sure whether I agree with this yet !!.

I am still searching the internet to find any thing more about this and am shocked to find so many people with similar symptoms to mine.

I look forward to hearing from anyone on this Forum.
Regards Candice :-)

Candice,

My first response reading your post was "Holy Schniekees!" What a mess and it does not sound like anyone knows really what to do.

Might I suggest going another direction just for opinion? I have found our pharmacist to be an excellent source of information. Granted, they need to be a good pharmacist, but they seem to consistently have a far better idea of how drugs affect the brain and more importantly, how they may interact with one another, than the many neuros we have seen. The only neuro who really understood the mechanism of drugs on the brain and with each other happened to have almost been a pharmacist before he switched over to neurology, so he has a really good grasp of all of this.

Getting to know and having a solid relationship with your pharmacist is a good thing in any event. I hope this may lead you to some answers.

Thank you for replying to my post I have a good relationship with my pharmacist as I have to go in for prescriptions a lot and she is always asking me how I am getting on with new meds, she also knows how i reacted to Parkinson meds, but I have never thought about discussing with her properly so next time I go in (this week) I will ask her advice and let you know what she sayīs.
Thanks again Candice :-)

My reaction is also Holy Cow. What a complex multi-pharmaceutical and otherwise nightmare. Bless your heart. It makes me more than a little mad that your GP took what I think is an inappropriate step in putting you on such a drug as sinemet without sending you to a movement order specialized (board certified) doc in the specialty of movement disorders. There is a VERY good reason doctors specialize--one can't be an expert in all things.

Parts of this address Candace and part the request for an update.

This is the link to my vid I made to document my voyage in quitting sinemet. I was up to 2300 mg+ every day and have what looks like lead pipe dyskinesia. This what shot at the height of my dosing. Sorry it's boring-it's documentation. The password is pd

https://vimeo.com/home/myvideos/page...e/format:video

I'll load a more recent vid when I can at 450 mg and 750 mg/day. It's amazing.

I haven't loaded more recent because I had a setback and have been off the computer due to a shoulder injury from the exacerbated tremor that comes with down-dosing. I also got really bummed to give up such hard won ground. Weeks of bad times and fighting this thing. I have no more Dystonia as I said and no dyskinesia. I had a heck of a right hand jackhammer tremor and injured my shoulder with muscle cramps from sinemet withdrawal. I also injured my hip and knee before I found a doc willing to help with the cramps more and I find that medical marijuana does help a lot with tremor and cramps. I had never tried it before so was pleasantly surprised.

I went down to 400mg/day from 450mg/day sinemet and then there were the holidays and doing too much. I am now at 750 mg/day comfortably. The thing that scares me is that I almost doubled my dose so I could protect my shoulder. The tremor caught up with me again and I am now a little under-dosed when I was fine on 450 in December. The annoying exacerbated tremor goes mostly away with MM. I am down dosing again and will until totally off a half pill a week barring injury. I'm waiting until I'm done to fix the shoulder. The shoulder feels better but I don't want to have ANOTHER surgery if I reinjure it. I had two previous surgeries on it for unrelated injury.

Theoretically I think a LOT of people could be dosing lower and having less Dystonia and less dyskinesia. It's so easy and we are so desperate to live normally. That little 1/4 pill doesn't seem like it would be bad but it can be as my body says. ALL of my symptoms are caused by sinemet. That should cause pwp's and docs to take notice on how and when they prescribe some of these drugs.

I've made no secret about my dislike of sinemet after my experience. Especially to young people. The effective life of the drug is 5-10 years, tending more toward 5. Sinemet should be a drug for down the road. None of the things you tell me below confirm it is PD. All of the research I have beaten through admits that until you die and they do an autopsy there is no certainty with PD. Scans and neuro exams can't tell everything.

While I think there is merit in trying several meds if you need to, I have a huge problem when docs prescribe meds to counteract side effects from other meds. This sounds like a lot of your changes came really fast to your brain and nervous system. If it takes over a year (from personal experience and research) according to most on this site and what little info I can find in finding how to quit sinemet. Your body takes months to get used to some drugs and get them to a therapeutic level and it takes months for them to quit influencing how everything else works.

Were I in your spot I would research and put some breaks on all the fast changes. Keep changes simple and one at a time so you can tell what matters. There are MANY kinds and classes of drugs that can treat PD without sinemet. Sinemet is a drug of last resort in much of the literature. It causes some very bad side effects. The longer you don't take it the more likely you are to get another diagnosis. After you are "labeled" many docs never question. I was headed down hill fast.

Since I have been diagnosed as PD-free sinemet induced PD symptoms as my body began to need more and more. I'll put a link up here of me before I reduced my dose of sinemet. I put numbers in there as far a dose and time. This was filmed before I found out I didn't have PD. I LOOK like I have PD.

Find a doc YOU sync with, respects you, is very well qualified, is board certified, read some peer reviews and patient reviews. All docs should provide you free of cost a curriculum vitae (an outline of their qualifications and professional/educational experience. Try www.healthgrades.com. There are some pay services that for $20 or so will allow you to look up docs for a period of time for a discount (i.e. unlimited 24 hours for $20) Google their name and check the state medical board for complaints. Even Yahoo has ratings.

You have my best wishes. I hope you find better news. Stick to your guns.

info vids done for family showing how complex it is. forgive any repetition, my family digs this. this one is not all my orig video-credits at end from youtube. I do NOT recommend this doctor in denver
my dyskinesia
passwd = pd

my dyskinesia password = pd
https://vimeo.com/home/myvideos/page...e/format:video

just to show how many things this could be and treatment alternatives. don't take the first diagnosis. outcomes vary wildly. remember i do not have pd.