VisualDude Posted October 13, 2011 Report Share Posted October 13, 2011 There are eleven studies showing benefits with L-dopa/carbidopa for treating amblyopia Holy smokes ... can you post the links? Link to comment Share on other sites More sharing options...
Phenomenon Posted October 13, 2011 Report Share Posted October 13, 2011 There are eleven studies showing benefits with L-dopa/carbidopa for treating amblyopia Holy smokes ... can you post the links? They are listed here: http://www.ohiolions...a.htm#PublishedLiterature A few ncbi-links: http://www.ncbi.nlm....pubmed/10646745 http://www.ncbi.nlm..../pubmed/8407216 http://www.ncbi.nlm..../pubmed/1432516 Link to comment Share on other sites More sharing options...
1998 Posted October 16, 2011 Report Share Posted October 16, 2011 After reading all the trials on Sinemet. I didn't realize it was so harsh on the liver and people were saying it's not yet meant to be used longterm. Just as a drug to find out what parts of the brain hppd is effecting. Have the trials gone on long enough that you now know this is a safe drug to use longterm???? I just read about all those clinical trials never knew it was Sinemet they were talking about I'm extremely confused. Can somebody explain to me if you are just getting regular liver check ups and why it's okay to take longterm now if it only last 2 hrs at a time? Thanx, hope you're all feeling good still....I've been having dreams about taking this medication for the last week freaking out I might feel normal again someday Link to comment Share on other sites More sharing options...
shaolinbomber Posted October 17, 2011 Author Report Share Posted October 17, 2011 After reading all the trials on Sinemet. I didn't realize it was so harsh on the liver and people were saying it's not yet meant to be used longterm. Just as a drug to find out what parts of the brain hppd is effecting. Have the trials gone on long enough that you now know this is a safe drug to use longterm???? I just read about all those clinical trials never knew it was Sinemet they were talking about I'm extremely confused. Can somebody explain to me if you are just getting regular liver check ups and why it's okay to take longterm now if it only last 2 hrs at a time? Thanx, hope you're all feeling good still....I've been having dreams about taking this medication for the last week freaking out I might feel normal again someday I have also heard about the possible liver complications but I don't know too much about it one way or the other.My Primary Care Physician didn't say anything to me about it and he's a very knowledgeable guy. Ill let you know if my liver suddenly fails from this haha. Link to comment Share on other sites More sharing options...
brendan Posted October 17, 2011 Report Share Posted October 17, 2011 any observations on sinemet and head pressure/information handling? Link to comment Share on other sites More sharing options...
brendan Posted October 17, 2011 Report Share Posted October 17, 2011 i'm tryin keppra but seems more anti-depressant than any direct effect on hppd. Link to comment Share on other sites More sharing options...
VisualDude Posted October 19, 2011 Report Share Posted October 19, 2011 After reading all the trials on Sinemet. I didn't realize it was so harsh on the liver and people were saying it's not yet meant to be used longterm. Just as a drug to find out what parts of the brain hppd is effecting. Have the trials gone on long enough that you now know this is a safe drug to use longterm???? I just read about all those clinical trials never knew it was Sinemet they were talking about I'm extremely confused. Can somebody explain to me if you are just getting regular liver check ups and why it's okay to take longterm now if it only last 2 hrs at a time? Thanx, hope you're all feeling good still....I've been having dreams about taking this medication for the last week freaking out I might feel normal again someday It depends on what dopamine med you are using. Sinemet has been in use since the late 1960's and isn't particularly toxic - especially on doses that might be effective for some HPPD symptoms. http://en.wikipedia.org/wiki/Treatment_of_Parkinson's_disease There are (and were) meds that, long term, can cause fibrous growth on heart valves - requiring surgery to replace valves (ergot derived meds). Selegiline ( MAO-B ) is a mild med but take it with ANYTHING that increases serotonin or norepinephrine and you'll end up in the hospital in serious trouble. There are COMT inhibitors that are liver toxic and only used if a person doesn't respond to anything else. There are anticholinergics that help some (balance the ratio of dopamine to acetylcholine) which has it's various side effects. (this imbalance may be one factor in having so much anxiety with HPPD) As far as the drug trials went, the people that did it aren't supposed to say what the drugs were. But, reading through the posts, some had no benefit, some had benefit but felt unpleasant stuff as well (perhaps too high a dose?), some benefited for a few hours (higher need?), and then some felt better for a few days (ideal). So, back to Sinemet, it's main problem is large dose over years. Otherwise, as far as meds go, it is pretty safe - see Jay's post Link to comment Share on other sites More sharing options...
shaolinbomber Posted October 24, 2011 Author Report Share Posted October 24, 2011 So i decided to have a few beers with my Sinemet today. I have to say all of my sensory systems seem authentic and real. Much more than usual. Like my hearing feels like it used to. It doesn't seem so out of place and strange. It's hard to explain. I guess it's the Dp/Dr fading in and out. Link to comment Share on other sites More sharing options...
zukov Posted October 24, 2011 Report Share Posted October 24, 2011 It's good to read that shaolin. I've got a lot of faith on sinemet, but i cant take it until i completely left the ssri and get a medical prescription. Link to comment Share on other sites More sharing options...
VisualDude Posted October 29, 2011 Report Share Posted October 29, 2011 shaolinbomber, One word describes it for me. - Terrible. Although Sinemet helps a lot when it is active, the times when i'm at 100% dissociation are bad. To put it in perspective, mine is/was so terrible that I ended up descending into a heavy opiate addiction to escape. http://hppdonline.co...r-derealization You are taking ½ pill of Sinemet 25/100 (not CR) 3 times a day? How long does it stay active? Before Sinemet, did your DR vary and if so, do you know any contributing factors? The only other thing that I can say for sure that drastically reduces both visuals, anxiety and DP/DR are opiates http://hppdonline.co...nch-of-placebos So opiates help more of your visuals than Sinemet. But Sinemet helps DP/DR the best? But because of the high levels you must take and the corresponding dependency, you can’t continue on opiates? How much of which opiates help you the most? (this might be an important clue) It still has a reducing effect on my afterimages as well Negative afterimages? Positive ones? Both? [Warning, another boring lecture about the dopamine system] While dopamine has been called a ‘pleasure’ neurotransmitter, it is actually more ‘primitive’. At its best it is about motivation and reward. [Lets face it, what is sexy about how dopamine in the retina adjusts for contrast?] This main limbic dopamine system has 2 partners – oxytocin and opioid. You know all about opiods, lol. In context with dopamine, it is feel good. Oxytocin is also feel good, but more ‘sophisticated’ – it is about bonding, about friendship. Take marriage as an example. You meet a girl, fall head over heels, and can’t stop thinking about her. This is endorphins (dopamine-opiate system). While in this state a lot of life falls to the background. Generally your job performance goes down. You are likely to get into accidents. This level of endorphins cannot be maintained and falls away. After 3 years or so, relationships deteriorate (this is the biochemical reason behind '7-year itch'). But endorphins have done their job – you got hooked. Now it is time of oxytocin. While most commonly known as mother-baby bonding, it is ALL bonding. If a couple doesn’t not cultivate being best friends with each other, then as the endorphins go, so does the relationship. How does one stimulate oxytocin? In progressive intensity -- a smile … a handshake … a helpful hand … a hug … a kiss … XXX. The point here? Understanding dopamine role in pleasure. As a contrast, serotonin is the major ‘feel good’ neurotransmitter – but it is about self and is blunting. It doesn’t motivate. It doesn’t build friendships. It is highest when you go to bed – to help you to sleep. Whereas, dopamine helps you to screw first, sleep later. It feels like plateaus. Every 2-3 days after my 1st-2nd dose a new wave of emotions and familiarity washes over me and i feel even more connected to myself and my surroundings Are you saying that, even though the Sinemet looses ‘activity’, when you take it again you are progressing? When it wears off, are you back to the way you were before ever trying it? Link to comment Share on other sites More sharing options...
shaolinbomber Posted October 30, 2011 Author Report Share Posted October 30, 2011 shaolinbomber, One word describes it for me. - Terrible. Although Sinemet helps a lot when it is active, the times when i'm at 100% dissociation are bad. To put it in perspective, mine is/was so terrible that I ended up descending into a heavy opiate addiction to escape. http://hppdonline.co...r-derealization You are taking ½ pill of Sinemet 25/100 (not CR) 3 times a day? yes How long does it stay active? 2-3 hours usually Before Sinemet, did your DR vary and if so, do you know any contributing factors? my Dr was at a constant 100% all the time before Sinemet The only other thing that I can say for sure that drastically reduces both visuals, anxiety and DP/DR are opiates http://hppdonline.co...nch-of-placebos So opiates help more of your visuals than Sinemet. But Sinemet helps DP/DR the best? Opiates are a cure all for me. If I could find a dr willing to prescribe them for off-label use in treating my HPPD/DR/DP I would be fine and content with life. But because of the high levels you must take and the corresponding dependency, you can’t continue on opiates? I continue to take them, but I try to keep my usage low How much of which opiates help you the most? (this might be an important clue) Any opiate except Darvocet helps me. It still has a reducing effect on my afterimages as well Negative afterimages? Positive ones? Both? The kind of afterimage that stays in your vision after looking at a light. It also greatly reduces the multicolored dot effect that I see on afterimages. [Warning, another boring lecture about the dopamine system] While dopamine has been called a ‘pleasure’ neurotransmitter, it is actually more ‘primitive’. At its best it is about motivation and reward. [Lets face it, what is sexy about how dopamine in the retina adjusts for contrast?] This main limbic dopamine system has 2 partners – oxytocin and opioid. You know all about opiods, lol. In context with dopamine, it is feel good. Oxytocin is also feel good, but more ‘sophisticated’ – it is about bonding, about friendship. Take marriage as an example. You meet a girl, fall head over heels, and can’t stop thinking about her. This is endorphins (dopamine-opiate system). While in this state a lot of life falls to the background. Generally your job performance goes down. You are likely to get into accidents. This level of endorphins cannot be maintained and falls away. After 3 years or so, relationships deteriorate (this is the biochemical reason behind '7-year itch'). But endorphins have done their job – you got hooked. Now it is time of oxytocin. While most commonly known as mother-baby bonding, it is ALL bonding. If a couple doesn’t not cultivate being best friends with each other, then as the endorphins go, so does the relationship. How does one stimulate oxytocin? In progressive intensity -- a smile … a handshake … a helpful hand … a hug … a kiss … XXX. The point here? Understanding dopamine role in pleasure. As a contrast, serotonin is the major ‘feel good’ neurotransmitter – but it is about self and is blunting. It doesn’t motivate. It doesn’t build friendships. It is highest when you go to bed – to help you to sleep. Whereas, dopamine helps you to screw first, sleep later. It feels like plateaus. Every 2-3 days after my 1st-2nd dose a new wave of emotions and familiarity washes over me and i feel even more connected to myself and my surroundings Are you saying that, even though the Sinemet looses ‘activity’, when you take it again you are progressing? I take it everyday. Im just saying some days it feels like it's helping a lot more than others. So it kinda feels like every so often it's making more and more headway with fixing whatever the problems are that cause the disorder. When it wears off, are you back to the way you were before ever trying it? Well I gotta say my dissociation is hardly ever at 0. There is always some in the background but Sinemet reduces the amount of time that i'm completely out of it. Link to comment Share on other sites More sharing options...
VisualDude Posted October 30, 2011 Report Share Posted October 30, 2011 Wow, 5 or 6 tramadol a day would wipe me out. What dose did your PCP prescribe you Sinemet for? 1/2 pill 3 times as you are taking now? Since you respond for 2-3 hours, you could try either 1 pill 3 times or 1/2 pill 6 times (with PCP permission). This is still considered a low dose. [For trial you can go up to 4 pills a day before needing a different formulation.] You could also extend dopamine with an agonist. Doctors seem to like Requip (it was useful but not well matched for me). 75mg Wellbutrin SR ever so often has worked as well but not everyone can tolerate this med. And there is time as well - as you are already noting progressive improvements. I forgot, do you have pain issues besides headache? Link to comment Share on other sites More sharing options...
shaolinbomber Posted October 31, 2011 Author Report Share Posted October 31, 2011 Wow, 5 or 6 tramadol a day would wipe me out. What dose did your PCP prescribe you Sinemet for? 1/2 pill 3 times as you are taking now? Since you respond for 2-3 hours, you could try either 1 pill 3 times or 1/2 pill 6 times (with PCP permission). This is still considered a low dose. [For trial you can go up to 4 pills a day before needing a different formulation.] You could also extend dopamine with an agonist. Doctors seem to like Requip (it was useful but not well matched for me). 75mg Wellbutrin SR ever so often has worked as well but not everyone can tolerate this med. And there is time as well - as you are already noting progressive improvements. I forgot, do you have pain issues besides headache? If im standing for too long my back begins to hurt a lot. I was a heavy weightlifter for about 8 years so I don't know if that's what causes that but the headaches I get are the biggest problem. Link to comment Share on other sites More sharing options...
1998 Posted October 31, 2011 Report Share Posted October 31, 2011 I don't mean to throw this Simenet off topic I know how big it could be Shalion, I lifted free weights for 3 hrs daily for 5 yrs. Also I used to play sports up to 8 hrs daily for most my life. My back, knees, two torn rotator cuffs, triple hernia surgery all this came from not stretching properly, plus wear and tear. I doubt how much muscle tension hppd causes helped. Anyways I'm on 400mg of tramadol a day and I'm taking clonidine to help the w/d's. I just got off percocet (down to just 5mg) and I want to get off tramadol but I work 7 days a week. I can't miss one day of work or I'll lose my dam job. Any thoughts. Sorry such a long post........ I get those headaches (they started prior to lifting but right after hppd) and the same thing with my back. Physical Therapy in the pool with no gravity works wonders. Therabands as well, set up a couple P.T. appointments and do all the stuff at your house. Sorry peeps wanting Simenet info. Once I get off tramadol I'll tell you how it works Link to comment Share on other sites More sharing options...
Guest Posted November 22, 2011 Report Share Posted November 22, 2011 Any progress? Link to comment Share on other sites More sharing options...
shaolinbomber Posted November 29, 2011 Author Report Share Posted November 29, 2011 About the same. The helpfulness of Sinemet seems to have leveled off a bit. Link to comment Share on other sites More sharing options...
1998 Posted November 30, 2011 Report Share Posted November 30, 2011 I think you also take tramadol, I take 400mg daily (max dose) I felt great for a while, but I'm starting to crave this med and it's making me feel a bit sick. If you've been on the same dose of any opiate for a while same could be happening to you IDK just putting that out there. Just hope it's the tramadol and not the sinemet, that's my last hope lol Link to comment Share on other sites More sharing options...
VisualDude Posted November 30, 2011 Report Share Posted November 30, 2011 About the same. The helpfulness of Sinemet seems to have leveled off a bit. So the amount of help you get has stabilized - no more 'progressive steps every few days'? Note about opiates. From time to time I take small amounts (am a light-weight ) - 1/2 tramadol 2 or 3 x a day or 1/4 vicoprofen 2 or 3 x a day. They certainly help pain and mood. However it does cause some visual difficulties. Basically reduces contrast ... in particular night vision is worse - a 'white out' effect I call 'lack of black' (smooth visual snow?). Perhaps DR is a little worse (if so, only very subtle). Have not tried higher doses since if you take pain meds above need you develop addiction Have no idea how others are/would be effected. Opiate circuits are related to dopamine circuits but beyond motivational circuitry, am unfamiliar with its roles. Thought it best to jot this info down for members. Thank you for keeping us posted on your progress Link to comment Share on other sites More sharing options...
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