must-be-a-way-to-heal

hey.. QLD now.. where are you?

I have been using Sinamet for the last few months.. it has not touched my visuals.. / hppd...

I will be seeing a specalist on monday... We will try something else...  What would be the best medicine to try now.. appart from keppra, Valium, Klonopin etc etc  any help recomendations appreciated.

ok awesome.. many thanks.. will check it out now..

Hey there people..

I am not so aware of all the new diffrent medicines used for hppd.. although i have tried many with no sucess yet. i.e klonopin, clonadine, keppra, valium etc etc etc

Basicly.. i have been living with HPPD for far to long..  and i am curious if there are any advances in treatments or options in / for medicines...   I would hope that we can come up with something.. as this really is a very difficult condition to live with long term.

Any suggestions would be awesome so i can suggest them to my specalist...

Many thanks..

hey there .. good luck..

good luck man.. really cool photo with the dog also

agreed absoloutley..

Yes .. thanks for that !  it is fustrating... all this time / energy.. have a right to be treated just as aneyone else would.. yes, have to keep on keeping on.. Your right mainly they are not helpful..  i was referred to the third docter, tho he proved to be a dick when he started to laugh LOL   yes, just having a vent in general LOL thanks

Doing me best to get medicine from Gps as refered from specalist. They treat me like im some kind of odity or that im telling a lie cos hppd is so rare... I ended up fighting with them and told them to f&*k off and that the medical system is totally inadiqute.. to then go to a  third docter. I started to share with the third docter and when i shared about my symptomes he started to laugh. I am beyond fed up and furious with these ignorant fools. They are the ones who are fucked up having no understanding or empathy whatsoever and just compounding the problem through labeling with there mis-conceptions. The system is really fucked up ... Fuck i would make a much much better therapist than any of these in-humane domesticated sheep.

hi there ok.. sure i understand now...  yes by e mail mail mail may be the best way, i will pm you my  email adress now. Thanks again, hope to hear from you soon.

unfortunatley i cannot down-load that file...

Ok thanks for the article.. fingers crossed this doc can pull some strings.. I do not care what i try.. i just want something that works for fucks sake... the doc im seeing is a professor so he has access to all specalists on HPPD internationally... you mentioned earlier that you would be able to provide some info to the health care professional so it would make it easier for them to be informed about this medicine and how it relates to hppd.. so thats what i was / am asking you for.. thankyou. yes i would  perfer not to use PMs... i would rather post on this thread that i started. thanks

that would be awesome and very much appreciated.... thankyou !!

hey @ Onedayillsailagain...   I have an appointment on monday with this neuro psychaitrist.. He would be able to perscribe Coluracetam  or Guanfacine  Gapapentin  etc etc    Can you PLEASE refer me to some reaserch articles or information sheets i can show him about these things...??

Thank thanks

yes you are right, thats what i was doing my best to put into words,,, thanks for shareing !

Im sure mny folks with HPPD experience this...

For example, suppose you are outside, it is a sunny day... then you suddenley walk inside, where there is a diffrent (or darker) tone of lighting, and.... basicly ones visuals are insaneley amped for al least two minutes to the point of not being able to see i.e. total "white out" in visuals. It is like it is trying to adjust or something or... it reacts to diffrences in light somehow ,,,,   possibly this mechanism is linked to some underlying mechnics of why hppd persists as it does and at the core of the problem???

As i have herd, it may have to do with the visual processing of information through filters etc etc --- i.e.you can see how this plays out in the above description,,

just thaught i would share

any feedback ?

Cheers.

thnaks

ok much much appreciated!! will make it easier for my doc to understand..

I can well understand having an "off day" keep on keeping on.. and do hope your feeling much better very soon.

Agreed,, really have to have the right mindset to go with it, optomism is very important and a great quality.

ok thats awesome work congrats... i no longer can party like a rock star eithre lol    no more seizures on the dance floor for me lol amyhow... what u suggested is great, i will go through all the info with my new doc   ... he is a neuro psychaitrist.. I will let him digest all the info and likley go by his direction. he is quite up there when it comes to profeccionals in the the feild as he is a professor, and can access specalists all over the world immediatley which is a good assest.    all good, kind of exiting this could be great .. sill have all fingers toes and everything crossed lol and have been making some prayers also....

Speaking of prayer and the spiritual realm... have recentley come across something of truly rare and immense value, tho need to be free of hppd s best i can so i can reap the full benefit. most people would not understand tho it really is quite profound...  may share some later...

have an awesome week

hey there

Will let u know as soon as i have it :-)

Wishing everyone the very best !!!

ok that was a great post  "onedayillsailagain" it sounds aweosme , i would like to see something like this take place .... it would be great to start to cloaberate to make something like u describe happen.

I would be curious to estimate around how many people endure HPPD...

I am also curious,,,, with this number of people... It it possible to all join forces with some type of plan, to take action to bring about some kind of reaserch / cure...

What would be the most useful way to achieve this...

Through public awarness

Through Raising finds for reaserch

Through reaserch trials...

There may be was to raise capital through various means...   i was checking out this site just the other day...

www.indiegogo.com

Tho.. something needs to happen soon, other wise it will be the end of my life LOL    i need to make the very most of this lifetime its important to me... anyhow will stop the rant.

Have just started seeing a Neuro phychaitrist : http://theconversation.com/profiles/harry-mcconnell-6536/profile_bio    this should be intresting... He said to me he thinks he can fix it.... and seems to be switched on...

ya fingers toes and balls crossed lol

sure, agreed... i find it  bit of a waste of time, and really.. other people do not know anything about me in real life...   I just figured, reading and other such activitys would possibly be good for the brain and re connecting pathways maybe, i may have seen this written in an artice on Hppd and exersizing your brain...  oh this is it here    http://www.wikihow.com/Deal-With-HPPD    

thanks bro,, and thanks for your awesome PM... ill reply as soon as i get a chance .. thanks again !!!!

ok cool great.. holidays sound good, yes really do hope we can find something soon !

ok cool awesome, well that sound good.. fingers toes and everthing crossed lol   .... will definatley have a chat with my Doc about it once i get to see him next. I really pray that this works, good luck!