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Showing content with the highest reputation on 04/25/2017 in all areas

  1. You are obsessing, no doubt about it. The likelihood of it getting worse, without any additional drugs, is slim to none. If you are staying away from drugs, then there are only a few things that could make your hppd worse.... SSRIs, heavy amounts of alcohol and stress. Avoid the first two and limit the last and you will not get worse. I would possibly look into CBT or something to try and get past the obsessive thoughts. and no need to apologise about anything... The forum is here to support, not judge.
    2 points
  2. The Visual Snow Syndrome study carried out by Dr Goadsby is close to starting a treatment phase of research . Yesterday Jen Ambrose posted an update ongofundme : https://www.gofundme.com/visual-snow '' Hello Eye on Vision Supporters!I'm sorry that there was such a long delay in hearing from me, but I sustained an eye injury in Feb and am only recently returning to limited computer use. I do have an update from London to share with you. Patients have begun to be qualified and scheduled for testing. Scans are scheduled for May and June at King's College. This is an important phase of research, because what is learned from these scans will determine how we enter into a treatment phase of research. Without this phase of research, we will not be able to proceed to medication testing. With that being said, I've been approached about funding for Dr. Puledda's salary for another year. Dr. Puledda works under Prof. Goadsby and is the primary doctor assigned to the Visual Snow research at King's college. As stated in previous updates we need approximately $70,000 USD per year to employ her. Currently we have only raised $20,000 USD which is a far off sum from what is actually needed to secure her. Almost all of you reading this who have VS have likely undergone an MRI. You have likely seen the very high bill to your insurance, or you have paid out of pocket. It's not uncommon to see bills over $1000. We are very fortunate that King's College covers all of these costs towards VS research. We need to assist them though by being able to pay Dr. Puledda for her time and efforts on our behalf. We would love for you to become a monthly donor and help us achieve our research funding goals. You can sign-up as a monthly donor here:http://eyeonvision.org/donate-to-the-eye-on-vision-foundation.htmlThank you, Jen Ambrose Please everyone make donations!! I know you guys got visual snow syndrome from drugs ( just as the forum info section itself says : drug induced visual snow syndrome ) but the symptoms are the same . A cure could be on the horizon if we start making donations!!! I've posted links about few other rare diseases that have found cures( or are close to finding one) purely by making large donations and not giving up . This is what patient determination and donations can do : https://www.hippocraticpost.com/innovation/gene-therapy-nervous-system-disorders/ https://www.technologyreview.com/s/603832/determined-parents-are-moving-the-needle-on-gene-therapy/ there are some other articles I came across a while back but I don't have the time to search for all of them again . However I hope that the above articles will inspire you to make donations for the visual snow syndrome research. It's the only option we all have left now !!!
    1 point
  3. Jay hit the nail on the head. Just stop using psychoactive drugs. I first noticed mild symptoms after my first use of LSD. I continued using psychedelics for years and the visuals definitely got worse over time. Sobriety is your best option. Chances are, it won't get worse if you're clean. Hang in there, it's going to be ok. I've lived with visuals for some time and everything is fine.
    1 point
  4. Actually, I said you have pre-hppd because you need to think about them before seeing them. Not because you only have VS. As I said on the other thread... Your best bet is something like CBT to stop the obsessive thinking.
    1 point
  5. I've made this post sticky... Sounds like great work, so far. Let's all get donating! If you need anyone from the UK for the test, i'm happy to do it... My VS is more like a blizzard
    1 point
  6. Just thought I'd post this video since its apt to the discussion at hand and mentions the site Sara has linked to above:
    1 point
  7. Walking anywhere away from civilization. I like to identify birds and plants on each journey. I guess I'm a nerd wherever I go (:
    1 point
  8. Im not sayin never smoke again. Just if you do, your brains probably not gonna "heal" back to 100%. Taking a break will let shit reset itself. I was never anxious on weed, but it kept bringing about more and more symptoms. It is what it is. Now a blunt is like snorting a line of ketamine for me. When i got HPPD it felt good. If had mild DP since may 2011, heavy DPDR since around november 2011.
    1 point
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