Over first year after surgery on brain cyst causing my Parkinson/dsytonia I went from 1.1gr total levodopa to about 750 too quickly after surgery and was like immobile zombie for a while. The I did slow taper, scared of withdrawal and kept reinstating because of side effects. Last month did a more abrupt cut. Now on 250.
What I figured out was that problems I thought the medicine were causing were caused by fluctuating levels of medicine. So the upswing and the downswing were the worst parts. I'd not realized how much parky and mental symptoms of illness can mimic the effects of fluctuations. Thus far big reduction a few weeks ago very helpful. But remember, I don't have actual Parkinson disease and rapid reductions can be dangerous.
In recent weeks I've had trouble getting started/stiff in AM. These horrible nightmares where I'd wake up but be paralyzed unable to move. Plus twisty stiff and pain as I'd not had prior. Also mentally sloooow. But these are clearly passing and I'm better than I was. Also changing from taking meds every three hours to three times a day makes me feel way way better.
MJ extracts may be useful in neurology, certainly theres good science behind this is based on animal and lab studies and theories, not high quality studies w/people. I tried as an teen, didn't like it.
Despite much research theres nothing that can change the underlying progressive nerve problem in the brain. So treatments are all for symptoms. If you've found something that works for you that's great.
I had intense reactions to nictotine, benadryl, other compounds. For a while I was smoking to treat the dyskinesias/mental fog even though I wasn't craving (doctors orders actually). I had a big crash with a quit. Gum/patches didn't work as well. I'd not smoked in years before illness then relapsed big time.
Also, as regards levodopa, it an organic compound which is a normal metabolic product produced by the body. In the brain it turns into dopamine which is the exact molecular structure/equivalent to the dopamine your brain makes. I don't think it causes brain damage as in making underlying Parkinson's disease go faster but the side effects can sometimes be worse than underlying disease. Big rock and hard place, usually many years after dx.
You say you are in "honeymoon". Do you mean by this that levodopa it is working well for you but you are scared it will hurt you or make you dependent? There actually is a lot of research on that in humans. Large body of evidence. Broad consensus among movement neurologists that levodopa does not cause underlying progression of the disease. Previous ideas of harm debunked. Those idea were heavily supported by big pharma.
Personally I think I suffered from not being able to distinguish medication effects from side effects, eventually. However, the benefits of the levodopa, before I got the fluctuations, were amazing and my life was better for longer because of it.
I've also had great help from movement/dance/physical therapy. PTs vary highly in quality. I think Feldenkreis and Alexendar techniques classes have been very very helpful and they work at sort of problem with movement integration which we get.
Thanks for sharing your experience!
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Originally Posted by OlliePop
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Can you describe what you went through trying to quit?
I titrated up to 2.5 pills (25/100) 3 times a day and back down to 2-3 tabs per day total of Sinemet. It was not a fun experience. I reduced the Sinemet and introduced cannabis for 90% of the symptoms I was dealing with. Today, I dose with a one to one ratio of TCH/CBD (micro doses) as needed (4-5 times per day). It works wonders! One to one is an seemingly an important ratio for neurological issues. I tried reducing the Sinemet completely but started to feel a big sense of gloom and doom with Parkinson's monsters rearing their symptomatic heads. Unlike you, I do have PD, but like you I feel that the powerful effects of Sinemet may do harm long term. With the "honeymoon" phase, I'm just trying to take as little as I need to get by.
I would like to see if detoxing, changes of diet, exercise, etc, add to the level of natural dopamine but since I am taking it in synthetic form, I don't know if it is possible. To do it all over, if I were to get diagnosed I would stay away from anything synthetic and concentrate on naturally getting the body and mind to mend from whatever toxin I had exposed it too through diet (healthy gut microbes), exercise and cannabinoid treatment.
Cannabis is not for everyone but the side effects are pleasant if not anything else. It's a new field. Talk to your colleagues and my guess would be they would frown but there are some doing legitimate research. Anecdotal reports are numerous and favorable. From one PD patient here, it helps more than anything so far.
Keep us posted. I would love to see you get off of it and close a chapter in your life that others are stuck in. I would like to hear from DoGma as well to see how he is fairing.
Best of luck!
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