I am on half 100/25 c/l more or less every 6 hours. I am fine during the day but I have to get up and move during the night or I end up jerking hopelessly for hours. Last night I was up from 12 to 1.30 and again at 4 am.
When I told the neuro that I feel cl does nothing for me (my tremor gets worse and I don't get on and off time) he said on time was when I was not jerking and off time was when I was. But then how come I can go from 8am to midnight without jerking? No off time in 12 hours and on and off often in the next 8?
He has prescribed amantadine for dyskinesia. I haven't tried it yet but I think to give up levodopa. My shaking is getting unbearably worse. Levodopa doesn't seem to do anything except make me uncomfortable.
Dr Costantini advised me to get more levodopa and I did try that but I jerked so badly I had to stop. I do take B1hcl and supplements and exercise and keto diet but I guess I am still on the wrong dose of b1.
I was diagnosed only September 2016, so in less than 3 years it seems to be galloping at me. I am fighting off simple terror l. I can feel my cognition going and I am appalled at what my husband and family are going to go through.
I would be most grateful for any advice or words of encouragement. This forum is such a blessing. Being able to talk to others who are in the same boat and who understand is very comforting.
Thank you all for being there for us.
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Celtis
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I was having similar issues about four years ago. I also found that I am 100% better taking brand Sinemet instead of generic (I just made my 10 yr. anniversary of my PD diagnosis.) My Dr. added Amantadine to my Sinemet. Made such a difference for me. You have to keep trying different things. Positive mental attitude has been my strongest drug so far. That and the fact that I don’t want to miss out on all of the things I have yet to do. Tomorrow is never promised. We never know what tomorrow brings. Take the best care of yourself that can.
My mom is starting amantadine - she currently takes sinemet 4x per day and 1 azilect pill. He prescribed her 100 mg of amantadine 2x per day. What do you take? How long before you saw an improvement adding amantadine?
Like you I was similarly levodopa intolerant - what worked for me was to take one dose of carbidopa levodopa 25/100 ER at night. Any more than that simply caused dyskinesia.
In an unrelated matter my dentist asked me to use an antibacterial chlorhexidine mouthwash. It is not supposed be swallowed, but inevitably slight amounts do get swallowed. That is not supposed to be a concern because it is not absorbed. After using this for a few days two things happened: my need for carbidopa levodopa increased, and my intolerance disappeared. So at the moment I am taking carbidopa levodopa 25/100 ER 4 times daily without any dyskinesia.
So my thinking is that the little bit of chlorhexidine modified my gut flora in a way that caused the above changes. This is just one person's experience and I have no idea if this will apply to anybody else.
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I should mention that celery seed extract is worth consideration. A controlled study has shown that it is beneficial for Parkinson's patients, and I believe it is helping me personally. See my writing here:
My husband had a couple of experiences with Amantadine over the years. He did get severe Orthostatic Hypotension. After about a year of use he also developed Edema and High blood pressure. After removing the Amantadine, those issues went away.
Thank you so much. All of what you say is really worth trying.
I would have responded sooner but I have had Internet problems.
About Qigong: I read your original post and I have been looking for stuff online with not much success. And now at last I have been following the free videos from the Chicentre for about a week.... and suddenly two days ago everything changed. I felt a deep peace and happiness in my body. That alone was enough to make it all worthwhile but what happened next makes it even more so. Suddenly I found I had energy. I could walk easily, enjoying it instead of finding it a boring labour. I could get up and do things, cook, clean up, move about. Up to now I have been too exhausted to move at all, especially in the afternoon.
What I wanted to say was, how could something so powerful come so simply? And so quickly? I want to thank you for posting your experience, giving us all the opportunity to explore this amazing healing.
I am taking amantadine (2X200 mg) twice a day but my consultant say i should only take i mornings and lunch times as it fights tinhe dopamine and causes shaking and problems getting to sleep
Itake clonazapam to stop me thrashing around in bed and it has definitely made things better Inow feel ive had a good nights sleep
try not to let it get you down but it took over a year to get my doses right but im still here after 19 years with it
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