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  1. SaraSara

    Important Research News !

    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 !!!
    5 Points
  2. Jay1

    Pre hppd

    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.
    3 Points
  3. K.B.Fante

    Hello HPPD onilne !

    Your story follows a very common theme here, as has been pointed out by above members of this site. I too had symptoms of HPPD from the time I was about 15 until 20. I did a lot of drugs in high school and at some point ended up with visual snow, depersonalization and slight afterimages, all of which are standard HPPD symptoms. After I graduated high school I actually took it easy on drugs my freshman year of college and within a few years I was symptom free. I took a few hallucinogens here and there but was always careful in never taking too much. Well, six years later all it took was a single tab of acid and I was thrown into a world and experience I wouldn't wish on anybody ever in the history of man. It's really clear that you're in a position we all were at one time and ignored. Don't be like us and ignore what your brain is telling you. Drugs don't work for you and your body type. If you keep doing them you'll regret it -- guaranteed. And not only that, you'll regret ever being born. Life on this planet is the greatest gift imaginable. Don't take it for granted. Doing drugs isn't worth it.
    2 Points
  4. Jay1

    Need medicine but scared to worsen my pre hppd

    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.
    2 Points
  5. K.B.Fante

    Important Research News !

    Just thought I'd post this video since its apt to the discussion at hand and mentions the site Sara has linked to above:
    2 Points
  6. TheMythos

    New psychiatrist

    This is the one that replaced my old pdoc who really worked with me on HPPD and took it seriously. I'm going to show her articles. I couldn't find the keppra one but I found the sinemet one, one where they used lamictal (which I've already tried), and a couple of others just to show her it's a real disorder. I'm going to tell her that these are my next options: *Upping the depakote to see if that does anything * Keppra * Sinemet And will report back with whatever I get and its efficacy.
    1 Points
  7. Austin

    Pouring fuel on the fire

    @Jay1 ok thanks for the advice. I've decided I'm giving myself 5 months of eating healthy, and meditation( never thought I would meditate) before I start any sort of drug to help. I have faith that time will make me better. I think my body was used to being stoned all day now it's not used to being sober. Thanks for all the help and I will send you a gift when I get cured. My parents said they give up on my health because I won't start meds. But I know deep down I'll get better over time. And I've accepted vs I'm trying my hardest to make myself like it as weird as that sounds lol it makes the sky look crazy @Jay1
    1 Points
  8. Jay1

    Hello HPPD onilne !

    If you are in a place where you are even thinking about smoking weed, let alone taking more trips... You are very low on the ladder. You are literally risking your sanity for the rest of your life. I've had this shit for 21 years now because I didn't take it seriously when I reached your stage and carried on taking drugs (mainly lsd and mdma). My life became immeasurably worse and not a day has gone by that I haven't been in serious mental and physical pain. I had to take 3mg of Klonopin to get through my wedding day.. Is another trip worth that sort of life? Drugs are clearly not for you... Enjoy that you learnt the lessons of mushrooms and came out relatively unscathed.
    1 Points
  9. Jay1

    Pouring fuel on the fire

    I'd throw them in the trash... Prozac sent me crazy. If your parents need info, i could take a phone call if it would help?
    1 Points
  10. Jay1

    Inositol

    I have tried it... Did seem to boost my mood a bit, but you need alot, like 10g per day. I'm not really sure how meds or supplements solve an issue like this though. I think something like CBT or meditation would be much more helpful. I would keep any kind of med or supplement as a last resort, not a first resort.
    1 Points
  11. K.B.Fante

    Constant open eye CEVs, panic, anxiety

    Honestly, I'm not sure what to tell you. It sounds like you have a severe form of HPPD (I had similar symptoms as you for the first few months before they started to fade) wherein CEVs are your strongest and most disturbing symptom except they occur when you're awake, from what I gather. You have to keep in mind that though there's a general list of common HPPD symptoms almost everyone has a different experience with this condition and many of us have symptoms that seem almost unique to our own personal brain malfunction, as appears to be the case in your scenario. For example, I have severe macropsia. Though there have been a few others who've reported this symptom I've yet to come across anybody who has it as bad as I do. I literally couldn't even see my hand (it was too blurry and big) if I put it a foot in front of my face when I first got HPPD because my macropsia was so bad, and to this day my hand appears completely blurry if I put it a few inches from my face. It sounds like you've seen quite a few doctors and been on your fair share of meds, so I'm not exactly sure trying out more medication is the best route. Is there anything that's made your symptoms better? Perhaps a time when you felt happier throughout all this? One thing that's helped me is to constantly take inventory of my emotions, HPPD symptoms and body in general to see what makes me feel better and worse. It's taken two years but I have a long, long list of things that help and things that don't. It really makes life easier to navigate when you know what to do and what not to do, especially with regards to eating.
    1 Points
  12. MadDoc

    Pre hppd

    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 Points
  13. K.B.Fante

    Important Research News !

    Here are the links to the visual snow studies mentioned in the video above: 'Visual Snow' -- a disorder distinct from persistent migraine aura https://academic.oup.com/brain/article/137/5/1419/334357/Visual-snow-a-disorder-distinct-from-persistent Visual snow: A thalamocortical dysrhythmia of the visual pathway? http://www.jocn-journal.com/article/S0967-5868(15)00653-0/abstract Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography http://www.pnas.org/content/96/26/15222.full Thalamocortical Dysrhythmia: A Theoretical Update in Tinnitus https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4460809/
    1 Points
  14. K.B.Fante

    Inositol

    I've read of a few people trying it, though obviously it didn't work wonders or else it would be more well known around the community. I think choline is often taken in combination if I remember correctly.
    1 Points
  15. TheMythos

    Massive migraine made visuals worse

    https://en.m.wikipedia.org/wiki/Acephalgic_migraine
    1 Points
  16. TheMythos

    Constant open eye CEVs, panic, anxiety

    https://forums.studentdoctor.net/threads/daytime-parahypnagogia.1095174/ I found this article very interesting. While I'm not seeing overt external hallucinations like this woman I am experiencing something that resembles daytime parahypnagogia, although it all seems mental. There's a part of me that knows this is all bullshit, but a part of me that can't control it. I'm pretty sure it was brought on by extreme stress, panic, and sleep deprivation in late 2015 but I'm not sure how to reverse it. K.B., doc, any ideas?
    1 Points
  17. Jay1

    Important Research News !

    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 Points
  18. TheMythos

    Important Research News !

    I'll give what I can.
    1 Points
  19. SaraSara

    Important Research News !

    U mentioned in ur other post that u attend Louisville uni which is in the US meaning u can't participate with the treatment/medication testing unless ur willing to travel to UK and stay here for a while . For more details u have to contact Kings College University London : vs-research@kcl.ac.uk The main thing right now is raising enough money 😩Or else we can forget about the research and a cure . We are extremely behind from 70.000 dollars .
    1 Points
  20. MadDoc

    What are your passions?

    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 Points
  21. MadDoc

    Important Research News !

    I've never had visual snow, but apparently many people with hppd do. It's heartening to see someone doing research in that area. Thank you for posting.
    1 Points
  22. K.B.Fante

    Important Research News !

    Thanks for this Sara. I hope people donate. We can't all sit here and complain and then when we have an opportunity to do something just turn our heads the other way.
    1 Points
  23. SaraSara

    Need medicine but scared to worsen my pre hppd

    Nooo !!! Don't start taking ssri's! I got visual snow, palinopsia, floaters ect from Prozac so do many other ppl and Themythos is right , the whole serotonin chemical imbalance theory is wrong . There are many research papers about it . I know ur mom ect seem fine but u already have vs ,taking something like ssri might make it worse in ur case and give u new visual symptoms. These are the visual problems many have reported from using ssri's : https://rxisk.org/keeping-an-eye-on-the-ball-visual-problems-on-ssris/ if this goes away and I ever get depressed for whatever reason I'm never gonna take ssri's or any new antidepressant that might come on the market !! Just wait for few months, if ur symptoms get worse try keppra or some other treatment others on this forum have recommend for hppd .
    1 Points
  24. MadDoc

    Constant open eye CEVs, panic, anxiety

    Do you think fatigue has anything with your symptoms turning on/off? When I'm tIred my visuals tend to be more prominent. Driving can be stressful so taking a long drive without anxiety sounds like a good sign.
    1 Points
  25. I wanted to give an update on my sine met use: had to discontinue >_< a few weeks after starting last December I developed a flaky rash on my face near my nose and on my back and groin. I thought it was something I picked up from a hot tub but unfortunately it was the sinemet. By the end, just taking even a quarter of a 25/100 would send my skin into a burning rampage. Such a shame it really helped. At least it stopped my muscle fasciculations. Unfortunately my upper life area might be kind of reddish for the rest of my life >_< every few weeks I have to use topical steroids to calm it down so it doesn't peak but it is red. Thank god for facial hair.
    1 Points
  26. 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 Points