I have had PD for 11 years and have taken many different meds. I experimented on myself with different doses and different combos of meds. I had very bad side effects on doses RX by my DR. and doses i tried. Landed in the er 3 times in 11 years. Then i found a new DR. who put me on carbidopa levodopa and things started to go right. That was 21 months ago. i started Crossfit 18 months ago. The combo of exercise and meds has help me control my PD almost completely. I learned to suffer the side effects and they would finaly stop as my body got use to the new meds.
I take 1 50/200 ext release C/L and 1 25/100 C/L 5 times a day and 1 6 mg requip and 1 azilec 1 time a day and fish oil.
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Bailey_Texas
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Do you take azilect at a specific time of day or with certain food? I have been taking it for 8 weeks and my symptons have improved but I have started to get dizzy which is intolerable. Also a bit nauseous. I take 1mg in the morning.
You are an inspiration and strong motivator to exercise, a reminder that "life with PD" can get better. I have a magnet on my refridg that keeps me going ....FALLING DOWN IS PART OF LIFE, GETTING BACK UP IS LIVING. Thank you for your frequent postings.
Bailey I am so happy for you. I was there in 2013. I did 7 days at Walt Disney World I felt so good. I am almost there again, almost. Another hurdle down and race to the next one.
I know for a fact that most PWP can do better controlling PD. The problem is finding what works for them. It took me 9 long years trying different meds . I had had all types of side affects, a mental break down (lasted 1 day). Lost the ability to talk, lasted 3 days, Trips to the er because i did not know what was going on. Now i would just ride the side effects out. They are scary but harmless. I also had sex addiction (this was great my wife and i had a great time for over a year, the meds got her too from just getting them out for me), gambling problems, unable to handle stress (lost my job because of that one). I had given up on eating out because i could not feed myself, went no where. Got to the point where jut mowing the lawn on my lawn tractor was hard. Walking more than 100 feet wore me out. Using the meds gave me the ability to work out and work outs gave the strength to walk, run and do any thing i put my mind to.
Just wanted to show that i was at rock bottom but i got up and said FU*K this and got off my poor me ass and took control of my life.
I am going to make a video of my work outs and post it.
A PA who saw my hubby when I rushed him in because I was so shaken when he one second asked me my name, then came out of it. (BP went quite high at that time, too It was a Friday afternoon and neuro and GP were unavailable) . said he suspected the symptoms were secondary to Lewy Body Dementia. My husband has had no mention of this by neuro or anyone. This is a new young PA at a GP office. I'm trying to hold it together and tell myself that he doesn't have all the facts. Can anyone comment?
Can you elaborate on the dosage andside effects of C/L that you suffered through? I don't mean to intrude, just trying to comprehend what may be happening in my own household.
When first diagnosed I took requip which made me walk around the house at night like a crazy man staring out the window walking in circles and doing crap that I just could not believe.
This scared the hell out of me because no one told me you could do that.
The first time it happened I went to the ER and they thought I had a stroke but let me go after a few hours and realized it was the medicine.
This happened off and on for a month or so before I got tired of it and had the doctor adjust the dosage.
I remained a requip for years it helped but not great.
During this time I developed a gambling problem my wife was very supportive and help me through it it cost me about $20,000 but we had the money And did not hurt us that bad.
I also was very paranoid butt it only lasted a few months and I didn't act on any of it. Also developed sexual addiction but kept it at home so that was ok.
My new doctor put me on Carbidopa levodopa and it worked well butt had a lot of down time.
So he put me on Carbidopa levodopa with an extender.. then he put me on rytary but as with the extender I would crash at about 3 hours and would not recover for 2. during this time I woke up one night unable to speak other than gibberish.. okay now off to the ER again 12 hours later $4,000 later they sent me home. the strange thing about not being able to talk was if I had a thought I could not say the words but I could read anything as plainly and as well as anybody.
I thought I had had a stroke. so back to Carbidopa levodopa to the dose I am on now.
After the riytary I began to exercise and it turned everything around. I still have some side effects and some down time but nothing I cannot deal with. Some Nights I am restless and don't sleep very well but most I sleep 5 or 6 hours.
Mostly in the evenings my hands get stiff I get a little down. this is because I am sitting around on the computer watching television and not moving. most of the time I will get up and just go outside walk around the yard or walking on the street. it seems to me the more I move the better I feel.
Sitting around worrying thinking about things just makes it worse.
Mostly the side effects that have are uncontrolled movements and spasms but like I said I just dealt with them and they got better to the point that I hardly have them at all now.
ask me anything about my experiences over the last 11 years I am an open book not ashamed and totally open about everything that happened. I still struggle with a little gambling addiction maybe I buy a scratch off or lottery ticket every week or so but I do not drink or smoke or party.
the requip is the problem with gambling not the carbidopa-levodopa when I was taken take Carbidopa levodopa without the requip I had no desire to gamble. But the requip I have to take for restless leg at night otherwise I would never get to to sleep. I am using voice to type program tonight because my hands are stiff I did not work out or do anything today and when I don't is when I get down.
I hope this helps if you have any other questions just post them if I can't answer someone will
Thank you Bailey. It is hard and embarrassing to open up your life. We need to educate all the facets of Parkinson's so those with and those without the disease can better understand ourselves.
Thank you so much for sharing your symptoms and your overcoming them. My husband has all of these issues. I am not able to get him to exercise more and consistently. Though i know that the urge has to come from within, PD patients, as we are told, need to be cued, prompted, encouraged and what not.
Can we connect, so that i can get a better handle on on this . You can email me at saranvasu@hotmail.com
Hi. So it's after midnight and I have been on this and other sites for quite some time now. I posted a question yesterday and have gotten no replies yet. I have come to rely a lot on this site along with my own researching. Thank you for your honesty and especially for taking the time to answer. Reading all these questions and comments can literally mean spending all day .. and night...here: not the most beneficial of exercises. I do hope and pray that you are feeling well and continue to do so. I am going to ask you the same question that I posted, but have received no replies on. Then I have to shut this down and get some sleep. Here goes. Took my husband to doctor on emergency basis late Friday afternoon because of confusion. He had been on 25/100 C/L (not extended release) for about 7 weeks as of Friday, The dose began slowly, as neurologist said there was no rush. First one a day for 2 weeks, then a second one for about 10 days, then the 3rd one. Fatigue improved minimally; balance, posture and gait improved considerably. Inconsistent bouts of confusion set in, and speech seemed to slow down, with difficulty finishing sentences due to frustration over word finding and frustration over the actual slowness of speech. The emergency trip to doctor was to our GP. He was unavailable so his brand new, young, just out of school PA saw him. I took him in because of confusion and BP of 160/ 115. It scared me. I thought he could be about to have a stroke. It was the start of the weekend. I needed help..we both did. Intake nurse took BP which was down to 135/90, went thru barage of questions..who is President, where are you, what is the day, etc etc. Hubby answered all perfectly. PA came in and talked with us, took temp and then grabbed an MMSE and went through all the questions and tasks with my husband. He missed 1 and a half, but scoring called it 2.
Per scale, that is the "best" next to getting them all right, and is considered ony Questionably significant. PA said it was not an appropriate test to have given him. Called Dr. in, who determined it was probably due to ...OMG How could I have forgotten to tell you this part..... Hubby had actually missed 3 CONSECUTIVE doses of his meds and when we discovered it we started it back immediately at the regular dose which now was 2 a day. Dr. said stopping and restarting was probably the reason. Weekend was much better; no confusion. Thought ..ok ...another hurdle over; another lesson learned. Then I got on our patient portal only to find a document summary of our visit posted by the PA, stating she suspected symptoms were Lewy Body Dementia. I had a panic attack, first of all because that has never been brought up by neurologist and because she saw him for 15 or 20 minutes for the very first time and posted that. I feel it is not appropriate. I have now done the research on that condition and for sure on side effects of C/L, which I had done immediately and over and over again after it was prescribed for him. I need words from you or someone you know who can tell me what you would do if you were in my/ our shoes regarding this situation. I know diagnosis of Parkinson's is difficult and other things can mimic it and I also know about the side effects and I'm seeing what they have caused my husband to have. It is definitely in the literature, for sure. Please reply. Thank you and God Bless.
If he is doing ok on C/L don't worry about the Lewy Body Dementia he most likely does not have it. I went to the ER with wild side effects they thought it was a stroke. C/L can cause the problems he had. Missing or stopping a dose is not a good thing it can cause weird things.I have stopped taking meds and all hell broke loose saw things that were not there,uncontrolled movements, all kinds of things.
You learn after a while to take it in stride. Side effects are just a way of live,
Just try to stay calm that will help you husband deal with it. I know you did ask but exercise is so damn important it makes the meds last longer work better and just helps you get though the day. Not just him but you. You need to exercise also. I worked 12 hours today removing old machines from a ware house in 100 degree weather i lost 10 pounds today from being so hot. I felt tired at the end of the day but my PD was not any problem. The more intense ,hard the work the better o feel.
I was on Azilect for 8 years don't know if it helped or not. i have been told that it helps you use what you have better. It the past they thought it slowed the progression of pd but it has been found that it is not true.
I was having nightly depression and would worry about every thing. I cried every night and just had a melt down. So stopped all my meds and added them back 1 at a time and azilect was to be last to add back. I noticed i no longer had the nightly melt downs. So no more Azilect and i have had no night time melt downs.
Just had a visit with my Neuro. They are upping my meds as my tremor hasn't been control. Taking ld/cd 245 3x a day and now going to 145x2 3x a day now. I hate the nausea at times and I get frequent headaches. Been walking and trying to cycle but DFW isn't very road friendly, learning the trails now... glad you found something thats working!
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