SaraSara

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SaraSara last won the day on May 1

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About SaraSara

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  1. I agree , the visual snow syndrome community and the hppd community should come together. But many vs sufferers don't want to be associated with hppd because of the stigma that comes with drugs . Plus the vs community is hardly active. There are more than 6000 ppl on the fb visual snow group but only few are active and donate money for research. They all want a cure but they want a quick fix and the research is going slow so that makes them believe that it's impossible to cure vs and they stop donating. The worst symptom for me is visual snow. if they can find a cure for that my suicidal thoughts will go away . The other symptoms are disturbing and of course I would like them gone but at least they don't make me suicidal . I've been in therapy for 6 months but I still find vs hell and I can't accept it or adapt to it . My only hope right now is David's news about hppd research coz I don't think that Dr Goadsby's visual snow syndrome research will continue. It's such a shame though. He's a brilliant neurologist .
  2. Sorry for asking this and being such a pain in the ass but I'm a bit desperate. When do u think there will be a cure for hppd/vs ? 5 years from now ? 10 years? Or 20? And what will this cure be like ? A pill that can undo these symptoms? Or something expensive and complicated like gene and stem cell therapy ? some ppl here believe that hppd/vs are caused by neuronal death others think hyperactivity. on the fb visual snow group Jen Ambrose had said that Dr Goadsby told her vs is treatable and if the research continues a treatment can be available soon . Some vs patients who visited dr Goadsby's fellow researchers at UCFS were told the treatment can be available in just 5 years if everything goes well !! However there aren't enough donations so the research will most likely stop😭. I'm constantly having suicidal thoughts and I just want to know whether there is light at the end of the tunnel or not . Ur one of the experts on hppd and vs I hope u can answer my questions.
  3. Thanks David learned something new .
  4. This is great news ! what did u do to improve ur symptoms?
  5. I'm not saying that it's a retina problem but the retina might play a bigger role than we thought. It's not just this article , yesterday someone on the fb vs group posted that his ERG result showed some kind of abnormality and his neuro-ophthalmologist thinks that his vs might be related to It . The person who posted this had not used any ssri's . More ppl need to do this test to see if this theory is correct. I got so freaked out when I read his post because it's just like what is written in that article the only difference is that one is ssri induced and the other is idiopathic vs . I don't know much about science, in fact I had literally zero interest in science before vs . U guys seem to know a lot more that's why I post these things to double check with other members.
  6. Ok I have some news . Apparently some ppl with vs have strange electrical retinal activity . I had read about this on here : https://rxisk.org/keeping-an-eye-on-the-ball-visual-problems-on-ssris/ But now my fear has been confirmed as few ppl on the fb vs group have had ERG tests and the results were not looking good . This means that some symptoms of visual snow syndrome and hppd can be related to the retina . I just hope that vs is not located in the retina coz at this point even stem cell therapy is having no success in retinal diseases. Whereas stem cell therapy and gene therapy both have had some success in some neurological conditions. We should all try to get an ERG test . vs/hppd might me more complicated than we thought.
  7. negative after images are normal to a degree but I have an extreme case I even have negative after images in te dark . I just hope that it eventually goes away . I find floaters worse than the after images though .
  8. I really hope that this is the miracle pill that we've all been waiting for ; effective without dangerous side effects . lamotrigine and Keppra have some rare but extremely scary side effects plus neither fully eliminate or significantly diminish our symptoms.
  9. Yes I have it in both eyes and yes genetics must play an important role . Obviously we have some faulty gene which allowed this to happen. Millions of ppl take ssri's or drugs and they get nothing. Ok so if it's calcium related would brivaracetam help ? It's an upgraded version of keppra if it won't give me nasty rashes I'm willing to try it out . Unfortunately keppra can have some dangerous side effects .
  10. Apparently they're gonna have their phase 2 trials in mid 2018 . That means the drug will be available within 6 years or so ? I don't know much about pharm companies. I just hope that this one will help vs and tinnitus. https://globenewswire.com/news-release/2017/04/26/972224/0/en/Xenon-Expands-Ion-Channel-Neurology-Pipeline-with-Acquisition-of-New-Potassium-Channel-Modulator-for-the-Treatment-of-Epilepsy.html
  11. @K.B.FanteYeah true u told me that before I forgot. My memory is really bad these days. But are u sure it was vs and not bfep ? coz u said u noticed it in the sky . If u also saw in the dark then u def had vs and eventually got cured . I'm quite freaked out after reading horror stories on fb vs group. They're all stuck with it .
  12. I've never read about a case where vs has completely disappeared. There was one guy who's vs had gone away for few days after taking keppra but it eventually came back . I just wanna wake up one day , see completely normal and close this awful chapter .
  13. I don't think anyone is gonna pretend to have vs/hppd or any other horrible condition. Ppl who come on these forums are either struggling or they are here to help fellow-sufferers. If u had asked me this question on Instagram I would have understood ur question. Many ppl on insta pretend to someone else . I've been to various doctors and I've had an mri nothing came up . They all kept telling me that it's just anxiety. To me vs is a big prob as it ruins my vision the most that's why I'm looking for something to get rid of that or else my depression will get worse . But every med I've read about so far has some side effect which can either worsen my mood , migraine, vs or even give me nasty rashes😖.I'm starting to give up looking for a med 😩.
  14. Lol no I'm a robot that's why I decided to join this forum and ask for advice ect . Why would u think I'm not a real person?😂 well since I got vs I don't enjoy anything. It has given me suicidal thoughts. I can't accept this disease . I don't have migraine aura just normal migraines.
  15. I agree , some kind of damage has happened. I did think of this possibility but I didn't want to admit it to myself. But as the author of this theory hypothesizes there are also some faulty genes involved that we need to discover and correct . Basically a cure for hppd and visual snow is most likely gene and stem cell therapy. I also fully agree with u that hppd is pure neurological just like visual snow .