must-be-a-way-to-heal

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Everything posted by must-be-a-way-to-heal

  1. Curious to know if aneyone has tried or experimented with this med... Thanks
  2. 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.
  3. hey.. QLD now.. where are you?
  4. 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..
  5. ok awesome.. many thanks.. will check it out now..
  6. hey there .. good luck..
  7. good luck man.. really cool photo with the dog also
  8. yes just started clonadine starting on x2 100mcg tabs per day.. will have to monitor my blood pressure, great that she is a hot nurse lol wish me luck.
  9. 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.
  10. agreed absoloutley..
  11. 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
  12. 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.
  13. unfortunatley i cannot down-load that file...
  14. 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
  15. that would be awesome and very much appreciated.... thankyou !!
  16. 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
  17. wow this is the ultimate site for trippers :)

  18. 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
  19. yes you are right, thats what i was doing my best to put into words,,, thanks for shareing !
  20. 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.
  21. 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
  22. hey there onedayillsailagain that was great.. you an exellent writer.. im not so into reading tho it looks awesome lolWill let u know as soon as i have it :-) Wishing everyone the very best !!!
  23. 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
  24. 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.