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About StephenNTx

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  1. Thanks PatriotM. Justto clarify, the learning curve took a little more than a month (including the high episode), but the quantitative analysis was from August to December. My personal experience was inconclusive. My intent was to express that (for me) using marijuana was minorly useful in my daily life. I still work full time, and while I no longer have to worry about drug testing, I still have to be conscious of my daily performance. Converting to a tincture was the best way to regulate dosing by far. Smoking through a bong was too erratic. The tincture was spot on, almost clinical. I just wanted to relay my personal experience, that is all.
  2. Six months ago I decided to try marijuana for my symptoms. It was especially hard for me. Until the summer of 2017, I worked in high skill industry positions that required random drug testing. For 25 years, I was clean. Not cheating and hoping I didn't get caught, I was clean. I fired guys for flunking UA's. I tried marijuana a few times in high school, enough to know it affected my ability to play football, so I didn't really care for it. Sinemet gave me nausea, insomnia, depression and yoyo on-off periods. It's only grace is it controlled symptoms enough to get through work, but in the evenings I crashed. Hard. I was not amused when family members would send me FB links of miracle cure videos using marijuana. But this past summer was so bad that I was willing to try anything for relief. I had given notice at my job so I thought what the hell. A, um, family member who smoked brought some over to try. I took a few hits and waited. Everyone was leaned forward watching me. Maybe it was too late in the evening, but I didn't really notice any effect, so I went to bed. The next day (Saturday), I got up about 5 and fixed a bowl like I had been taught the night before. I took a few hits, and started my routine. Made coffee, took a shower, and fixed a light breakfast before I realized I had forgotten to take Sinemet! I thought wow: I'll just skip this dose and take my next when I needed to. Besides, I felt really good! I crashed an hour later. The sinemet couldn't catch up and I had a pretty miserable day off. Note: does not replace regular medicines. A week later I tried again. I had a 4 day weekend (July 4th). 'Do more' my sage family member advised, so I did. I had nothing planned, so I smoked several times that day while taking scheduled Sinemet. I had a pain free, nausea free, and spasm free day for the first time in at least a year. Even though I couldn't get off the couch, I was optimistic. The next day felt even better. I even went out to dinner and a movie! My family was ecstatic. I was a little out of it, but I had a spring in my step and enjoyed it. Monday didn't go as well, Tuesday was even worse. Basically just quit working. I ran out of weed, and had to go back to work the next day. My wife said the house smelled like a college dorm hall, so it was time for a break. After this try, I learned a few things. One, I was using the cheap stuff, what college kids could afford, commonly called "skunk". A friend (who heard about the apparent success offered to get the good stuff, called "dank." I gave him a c-note and had to wait almost 2 weeks, but it finally came. I talked with him at length about how spotty it had worked before. He offered to help me make a tincture with my haul so I could regulate it easier. Ground it, baked it, and added it to everclear. Apparently it smelled up the house so bad my wife thought the cops would soon be knocking on the door. Then wait a couple more weeks. My job was almost finished, but I had a long shutdown and a going away party to worry about. In two weeks the tincture had turned dark green. My friend said it was ready, but start small. So I started with 1ml at six am, mixed with a little water, and washed it down. At seven it was barely noticeable. I thought about taking some more, but decided against it. By eight I was flying through the stratosphere. I had never been that high in my life. It was very intense, but nice. It lasted for about 5 hours, slowing down and picking back up, before finally mellowing out in the afternoon. It was never my intention to get high. I was experimenting to either help with symptoms and/or the side effects of the medications. I called my friend and he wanted to try. The next day he called me back to tell me he had never experienced anything like that either. I wanted to know what to do, because I really had no interest in doing that again. Use less! Next day If took one fl oz of tincture and cut it 1:2 with water. Then I took 0.5 ml and put it under my tongue. I went about my day. No releif. Next day, same thing. I gave up for the next week. I tried again Saturday morning. Same dose. As before, it took two hours to reach full effect. It was very mild, and enjoyed it while I did small stuff around the house. I could, at times, forget the symptoms. The effect lasted into the evening. Same dose Sunday, but not as good. So about the symptoms: nausea, pain, stiffness and sleep. Nausea was well controlled. I estimate 80-90% reduction, at times 100%. Even when it didn't seem to help with the others very much. Pain was hit and miss. Maybe 60% reduction for the first few hours, 30-40% after. Stiffness and spasms were better. Maybe 75% for a few hours, then 50%. Sleep was improved about 1.5 hours extra from around 3 hours. As long as I didn't take it too late in the day (more on that later). I was concerned that daily use yeilded successively poorer and poorer results. My family member warned that tolerance is built up quickly, so I would need to take rest days between doses, or take more. I did not want to do that so I settled on every other day. This pace worked, with similar effects noted above, for the rest of the year. I started to slack off the schedule by Thanksgiving, and by now I have used nearly my entire supply. So here I am. Six months of an experiment. The nausea abatement was profound, and sleep was improved enough to make the days better. However, the stiffness and pain relief was hit or miss. In my state, possession of any amount is a crime and punishment is draconic at best. Maybe that will change, but I'm not holding my breath. There is no medical marijuana, either. I'm not sure if I want to continue, but it was nice for the most part. What do you think?
  3. StephenNTx

    What to do

    Hey, we had a foreign exchange student from Brazil 8 years ago. About the time I started to manifest symptoms. She found out two days ago on Facebook when I announced my diagnosis. She told me she remembered me as a hero and an inspiration. All she wanted to do was come to the U.S. and give me a hug. Just be honest and forthcoming, no deception. I think your extended family member will be compassionate and understanding. Don't worry, it is okay. Love from Texas
  4. While I have been struggling with this, I need other thoughts and experiences. Sinemet challenge pretty much confirmed my diagnosis. The first couple of months taking it was like my life came back. As a side note, my family noticed I started to care again, I started to feel emotions again. I have noticed this too, it has been a little disorienting. But then I started to have emotional problems unlike anything I have ever experienced. Two and a half weeks ago I spoke with my MDS support staff about this and they approved a temporary sub-therapeutic dose until I could get my PCP. In that time, I realized that I cannot physically do my job without sinemet. However, the sinemet has serious side effects. My main ones are anxiety attacks, depression, heat intolerance, and excessive sweating. These were reduced with the lower dose, but all the symptoms I initially sought treatment for started to return. I had to get back to the regular dose. My PCP prescribed propanolol, zoloft, and a few zanax pills. I can't take the zanax (just like the sleep medicine before) because I am on call 24/7 and I am required to answer the phone. Is this normal? Do any of you have to take other medications to counteract the sinemet side effects? I think I can continue to work for the time being if I can get this under control.
  5. StephenNTx

    3 1/2 months in... And more questions

    Thanks Beaus mom. My MDS is at Baylor as well. I will add your advice to my notes for Friday. Didn't think of that.
  6. StephenNTx

    3 1/2 months in... And more questions

    The published symptoms for PD and sinemet side effects seem to be mostly the same. I sweat more than ever. It literally pours off of me. I'm soaking wet from 10am until I get home. I feel like I'm on fire inside. Two months after starting sinemet I started having daily anxiety attacks, emotional distress, and depression. Sometimes at the same time. Two weeks ago, with the blessing of my MDS, I cut the sinemet dose in half until I can get in to my PCP. These symptoms seem to be less severe, but the physical symptoms have come back some. What are your experiences starting treatment and dosage adjustments? Thanks in advance.
  7. ay some back story: I am 45 and work as a facilities maintenance director. My job is full body contact, physical and I walk 5-10 miles daily, usually carrying tools or parts. I am on call 24/7. 5 years ago I was diagnosed with blephartis (dry eyes). Could not afford Restasis, so my ophthalmologist recommended eye duct massage and careful eyelid cleaning. Moderate relief at best. Never occurred I wasn't blinking enough. Sleeping 4-5 hours a night. I have never slept more than six. 3 years ago I was excessively tired and becoming more heat intolerant. Chalked it up to age. Sleeping 3-4 hours a night. Two years ago I fainted after standing at work and hit my head hard enough to get earn a hospital stay and imaging tests. Noticed balance problems walking but especially on ladders. More fatigue, more heat intolerance. Pain in ankles, knees, and hips. Sleeping 2-3 hours a night. Began taking naps during lunch break. One year ago I had an episode while driving. I could not remember what I was doing or why, for about 30 minutes . Wound up back in the hospital. 2nd MRI among other things. (Mis)diagnosed with First Adult Seizure, given anti-seizure meds. Quit meds after 2 weeks, because I could not stay awake. Sleeping 1-2 hours a night. Lunch nap almost daily. Frustrated and getting more and more angry. Eight months ago I told my family doctor (FD) that I thought something was very wrong. Tested for everything. One neurologist blew me off (previously diagnosed me with FAS), Rheumatologist said I need to see a MDS. Waited four months to see one in Houston. He reviewed previous test, did a physical assessment, sinemet challenge. Then we knew. Parkinsons. The sinemet has reduced visible symptoms greatly. Reduced muscle tension, balance issues, gait abnormalities, tremor and pain. It has not helped fatigue, insomnia, or heat intolerance I have never felt stressed in my life. Never had depression. After two months (on sinemet), I began to have near daily anxiety attacks, severe emotional distress, and depression. Two weeks ago, I cut back to 1/2 sinemet. That seems to make emotional problems less severe, but physical symptoms are not well controlled. Seeing my FD on Friday. I have got to get this managed or I am going to start dropping balls. I fear I will anyway soon enough. I'll post follow up questions tomorrow. Sorry for the long rant...
  8. StephenNTx

    C/L challenge and dosing

    Thank you Dan. I am six days into a C/L (Sinemet) challenge and feel better than I have in a long time. I am trying to understand how this drug works for me and how it has worked for others. I love hunting, btw.
  9. StephenNTx

    C/L challenge and dosing

    I am sleeping well at night--better than I have in years. The grinding fatigue is much improved, but still present. Normal?
  10. StephenNTx

    C/L challenge and dosing

    Good evening friends. I am taking Sinemet 25/100 3x day. I have settled on taking it at 7am, 11:30am and 6pm. It appears to work best if taken 30 minutes before eating. If I wait an hour to eat I feel a little woozy. I have zero other side effects. Nothing. Nada. Residual seems to be about 5 hours. Even though it seems to be working great at this dose, I would like to experiment with a lower dose (maybe half) before I return to my mds. What have you experienced? Does lower dose equal lower residual? I have read some sad stories here about roundabout paths to diagnosis, and yes, I have a story to tell as well.
  11. StephenNTx

    New here

    Thanks, guys. I'll be back.
  12. StephenNTx

    New here

    Hello all, newly diagnosed. I am 44 and 5 days into a C/L challenge. Looks like a slam dunk. I haven't felt this well in 2 years. I am struggling with the timing of the three doses, but should have it figured out in a few days. I have many questions, but that can wait for now. I wanted to introduce myself and tell you thanks in advance. Your interchanges between members have already helped. Stephen