must-be-a-way-to-heal Posted May 8, 2012 Report Share Posted May 8, 2012 Hey everyone.. Have been taking Leprodopa for over 3 weekeeks now and moved up to 3 whole tabs per day. Unfortunatley i have noticed no differance in HPPD symptoms. I Possibly will stop taking it soon, ... is there a right way to stop taking it? Will also be starting on Keppra within the week... Do you suggest having all drugs out of my system before i start taking it, i.e. Sinemet and Valuim.. Thanks very much Link to comment Share on other sites More sharing options...
Jay1 Posted May 8, 2012 Report Share Posted May 8, 2012 Sorry to hear it didn't work.... You should speak to your doctor about how to come off it and especially how to come off Valium (if you have been taking it everyday). There are some clued up people here, but everyone is different,,,, you should always consult your doctor. Good luck with the Keppra trial. Link to comment Share on other sites More sharing options...
must-be-a-way-to-heal Posted May 8, 2012 Author Report Share Posted May 8, 2012 Thanks very much Jay 1.. Ok i will get clear on the best way to come off Sinemet from my Doc.. i have only been using Valium for a short while anyway.. Thanks very much i will keep everyone posted about starting Keppra next week. Link to comment Share on other sites More sharing options...
Alex Posted May 8, 2012 Report Share Posted May 8, 2012 sorry sinemet didnt work for you mate. i ve been waiting for your results as I was going to try it myself could you give me a description of your visual symtoms so I can compare them to my own. Many THanks Al Link to comment Share on other sites More sharing options...
VisualDude Posted May 8, 2012 Report Share Posted May 8, 2012 Most of the symptoms you listed http://hppdonline.co...tarted-sinemet/ in post #4 don't seem to be dopamine related Halos being the major exception - do you still have halos? Magicals request is EXCELLENT. We need to build a database of symptoms and how meds affect them. This will eventually be helpful for people to more successfully target what they need. [ Note to mods: is there a sane way to organize such a thing? ] It is good you are trying Keppra. While most don't seem to have a lot of response, a few have tremendous success. As for discontinuing Sinemet, generally it is best to taper meds. However in this case I recommend cold turkey. I've done it several times usually without much effect. But by stopping suddenly, you will maximize the possibility of your noticing if there were any subtle changes. Sinemet has a very short half-life (45-90 minutes) so with 3 doses a day you are actually having large shifts of it in your blood stream. However, because it is a precursor, the body generally uses what it needs (if it needs it) and ignores the rest. It doesn't have the dramatic effects of other meds - in other words it is gentle. A rule that doctors use about how long meds stay in your blood is 5 1/2 half-lifes. So with Sinemet at 90 minutes times 5 1/2 equals 495 minutes - 8 1/4 hours. Taking it 3 times a day is about 8 hours apart - which is almost cold turkey every day. However more than the amount in the blood stream is involved. There is additional time for the body to adjust. But again, I frequently discontinue to see if my baseline has changed. Sometimes 'cold turkey' and always without problems. Once (on doctors request) I discontinued all meds cold turkey - the combined effect was unpleasant. [ FYI: While Sinemet is my base medicine, after a secondary injury I usually take: Gabapentin, Klonopin, and/or Vicoprofin (1 or any combination) as well as trying many others. ] Hope this helps Link to comment Share on other sites More sharing options...
Alex Posted May 9, 2012 Report Share Posted May 9, 2012 Yes, if it’s true that hppd has different guises, which I’m beginning to realize seems to be the case, and therefore different meds work better in different cases, than a database is a great idea. I’ve just read must-be-a-way-to-heals symptoms and they don’t sound a bit like mine My symptoms are all about negative afterimages, even shadows that seem to come from nowhere floating about all over the place, I have recently realized are after images forgotten about and then coming back in for a second time. I do have grainy air type symptoms and the occasional squiggly floater but not much. Link to comment Share on other sites More sharing options...
Jay1 Posted May 9, 2012 Report Share Posted May 9, 2012 I guess the easiest way would be either to post your visual symptoms in your signature, or start a thread where we all add our symptoms.... but maybe one of our more technical users could put togrther a database? Link to comment Share on other sites More sharing options...
zukov Posted May 9, 2012 Report Share Posted May 9, 2012 I dont remember quite well, but some people here who tried sinemet report a great improvement of dr-dp Link to comment Share on other sites More sharing options...
Alex Posted May 9, 2012 Report Share Posted May 9, 2012 Once enough data has been collected it may be useful to put the results on a graph or in a table so what works for who becomes more transparent Link to comment Share on other sites More sharing options...
Jay1 Posted May 9, 2012 Report Share Posted May 9, 2012 The problem with a med database is the benzo use, imho. It seems like some of these meds just help boost the benzo for a whlie. I don't remember many instances of someone getting decent relief from Keppra or Sinemet without a benzo being thrown into the mix. I might be remembering wrong though. Link to comment Share on other sites More sharing options...
2muchmandy Posted May 9, 2012 Report Share Posted May 9, 2012 we could make a thread. everyone posts their symptoms. what medicine has helped what, then the original post can be edited with the below results for people to view? i was also wondering if hppd has different breeds/strains if u will. mine appears to be very mild, yet heavily visual snow/afterimage related with bouts of anxiety Link to comment Share on other sites More sharing options...
must-be-a-way-to-heal Posted May 10, 2012 Author Report Share Posted May 10, 2012 ok cool that was very helpful Visual.. thanks Visual and thanks Everyone.. I was going to mention i definatley have halos as a part of my symptomology. As far as i am aware, i have all hppd visual symtoms. I think that is a good idea ... re : symptom description for each individual and what meds are beneficial. Seeing my dictor in 2 hours, i will bring up with him Gabapentin, Klonopin (although have used for long periods of time previous) and Vicoprofin / possible combination..... as mentioned by Visual, and also keppra. I have a feeling Naltrexone would likley be benefical.. tho i have a feeling it would nock me around i.e. put me on my ass .. and find daily functioning and effectivness an issue, as well as being highly addictive. Who knows.. it may possibly be worth a try...? i will discuss this with him today also. Thanks again. Link to comment Share on other sites More sharing options...
VisualDude Posted May 10, 2012 Report Share Posted May 10, 2012 The problem with a med database is the benzo use, imho. It seems like some of these meds just help boost the benzo for a whlie. I don't remember many instances of someone getting decent relief from Keppra or Sinemet without a benzo being thrown into the mix. I might be remembering wrong though. I seem to be the only one who does well with Sinemet alone. Often taking it alone. [ I thought that Dr A's drug trial required people off all meds - but we won't really know what he did until he publishes. ] I do use Gabapentin and sometimes Klonopin for non-HPPD reasons (a pseudo/pre seizure problem that is timely to describe). With the exception of one small symptom, they have no positive effects on visuals at any dose tried (Gabapentin: 100mg to 1800mg / day; Klonopin: 0.5mg to 3.5mg / day) ok cool that was very helpful Visual.. thanks Visual and thanks Everyone.. You are welcome ... I try to help we could make a thread. everyone posts their symptoms. what medicine has helped what, then the original post can be edited with the below results for people to view? i was also wondering if hppd has different breeds/strains if u will. mine appears to be very mild, yet heavily visual snow/afterimage related with bouts of anxiety Yes, someone(s) will have to compile reports - which is quite an undertaking. Rather than edit, just extract pertinent info to a chart (but leave original) It would be helpful to have a standardized questionnaire with pictures - HPPD symptoms are complex and the vocabulary needed to describe them is difficult. But the goal is obtainable. Since combinations are likely (most often Klonopin), any chart/table will need multiple columns. Also effectiveness of meds usually drift over time and that info may need to be shown. All this would require dedication from all members who participate. [ Is it time for big drink yet ] 1 Link to comment Share on other sites More sharing options...
2muchmandy Posted May 10, 2012 Report Share Posted May 10, 2012 i might have a crack at drawing something up which would work. gunna be a mammoth task though. il have a little think tonight and see what ideas pop round my fried head Link to comment Share on other sites More sharing options...
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