sandrad1975

This is great news.....please keep posting updates on your progress with this med. Seems so promising, would really like for my son to give it a try soon.

Thanks, you sound like a great mum... make sure he knows that the community is here for him and that there are plenty of people on here who have gone on to lead successful and happy lives...

I think sinemet will help him with the out of body symptoms... it sounds like it is really helping people with that particular symptom.

How about the anxiety.....that is really bad for him, he is so nervouse all the time and has sever social anxiety. Will this help, the only thin that seems to help him is taking the Kolonipin, and I am afraid this will only cause more problems in the long run. But with out it he would not function at all.

Hi,

Thanks for the report back, im interested to know if you have anymore to report in the coming days and weeks. My son is only on 10m of the Prozac as he was very depressed about his symptoms after almost three years and was suicidal. The low dose has done well for him as far as depression but nothing else. We tried to increase his Prozac to 20m a few weeks ago and he freaked out, wanted to kill himself and harm others and had a major panic episode for three days. I almost had to call the mobile crisis unit to take him to the psych ward, but I toughed it out...even though he scares me when he is violent. So he went back down to 10m again and I dont think we will try to raise it again. However i would like to talk with his Doctor about taking him off the Prozac and trying Sinemet. He still takes .5m Kolonipin and that help both his visuals and the severe anxiety, his Dp/Dr went away within the first year and he hardly ever has a problem with that until he gets really stressed or has a panic attack and then everything looks like a cartoon to him and he no longer feels as if he is in his body...but it goes back to normal after he relaxes and settles down. We go through this cycle a few times a month...ups and downs. And YES it is heartbreaking. I myself took Acid and various other things when I was younger, I new he was experamenting and did warn him that he may cause damage to his brain if he did too much or too often. However I never in a million years thought something like this would happen, did not even know of HPPD or I would have for sure done things differently. He is so young and has never has a chance yet, he has such a hard time that I dont know if things will get better for him as he doesn't even know where to begin at repairing or starting his life. I pray for him and all of you with HPPD everyday and hope that things get better soon.

Love and Peace

Mama Dreads

Hello,

I have been reading about all the positive experiences on Sinemet.....I want my son to try this. He is 18 and has had Hppd for almost three years now. Life has been very difficult for him since he got this. He is currently taking Prozac 10m and .5 Kolonipin. My question is.....when any of you first started taking this, did it freak you out in a bad way? Like angry, hostile, nervousness, increased anxiety or agression???? He has tried things that have made him almost go off the deep end and I have a hard time controling him if a med does not agree with him. Im scared to have him try anything else because of this, but this sounds so hopeful!

Thanks!

He is 18 and has had this since 16.

im gonna be honest i dont know to much about nac but when i take it with the klonopin which i HAVE to take at the moment, i get really hot, stomach cramps, face turns red, and i really have not seen that many benefits. granted ive only been taking it for a week or so as well. i also have been on the Klonopin for about 2 years took a mjor 50% cut at once and 2 months later still not stabilized. DP/DR is off the charts. thinking about Keppra tbh combined with klono.

back on subject though to sum up my experience has not been what to expect. its been worse but unless your son is complaining about anything i dont see the harm. im waiting for a response on if this is normal. i only take 300mg twice a day i think i might stop. hope it works out for him keep me updated, how old is he if you dont mind me asking? you can pm me if you want.

Please give update on Keppra.....anyone?

Did you ever find out if the NAC and Kolonipin work ok together....I have started my son on NAC and he has been taking Kolonipin for two months. Please let me know how its working for you.

Thanks

My son has Hppd and his DR has put him on Prozac....she seems to know nothing about Hppd and Im scared it may make his worse... anyone taken Prozac, and had positive or negative effects???? He has been on 10m for two months and was raised to 20m but freaked out so now he is back on the 10m. Along with .5 kolonipin.

He is also taking Gabbapinten

My son has Hppd and his DR has put him on Prozac....she seems to know nothing about Hppd and Im scared it may make his worse... anyone taken Prozac, and had positive or negative effects???? He has been on 10m for two months and was raised to 20m but freaked out so now he is back on the 10m. Along with .5 kolonipin.