SaraSara

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SaraSara last won the day on April 24

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  1. Thank u Jay☺️. To participate with the study u need to contact King's College. I know that they want as much data as possible ( they literally want to estimate how many ppl are suffering from this condition and how rare or common it is ) but I don't know how many ppl they need for the treatment/medication testing phase . Usually when u first contact them , u need to give ur fullname , address ect and u need to describe all ur symptoms ( how ur vs exactly looks like ,the colour , shape , density , additional symptoms such as palinopsia ect ) . They also would like to know which medications had positive or negative effect on ur vs . U can find the questionaire on the EyeOnVision website . If u can't find it let me know . I'll post it on here . I do have to add that asking about the medication phase of study is too early at the moment due to lack of funding. I don't think they will respond to those questions right now . We will know more after the fmri results .
  2. I hope that mine aren't retinal related either and that it will improve over time .
  3. @TheMythos if ur on the fb visual snow group please repost this , including those links I added about other rare diseases that are close to finding cures with the help of massive patient donations . Vs and hppd patients need to get inspired 💪🏻 Together we can hopefully find a cure!! I'm not on fb anymore ... unfortunately I can't handle looking at pictures😩 ... they look pixelated ever since I got vs and photography was a passion of mine😢 Put some additional inspirational and motivational arguments why ppl should donate. None of us is completely safe not even ppl with mild versions . Vs can get worse any second even if was stable for decades( Jen Ambrose herself had mild version until she was 27 ) Remind them why it's so important to donate money into research . Another thing I've noticed is that many vs patients think that fmri was already done in 2014 which is wrong . That study was carried out with PET scans . Fmri has a better resolution and will give us more insight. Another thing to add is that research is going slow due to lack of funding not because of the researchers!!
  4. 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 .
  5. For Tms and Tdcs they need to target the exact area and circuitry or else it might mess up ur brain even more . They should map out ur brain and see which areas are causing ur hppd and what the abnormalities are compared to a healthy person ( using something like fmri ) before carrying out the procedure. u need to find someone with an interest in hppd . I believe some members here have seen Dr Abraham in person and might have his personal email address. If so , u can contact him and ask whether he knows anyone in ur area who is interested in trying non-invasive brain stimulation treatment in hppd patients. If Dr Abraham is not able to provide any help , u have to search on the internet for organisations and scientists that are interested in the workings of lsd . Send them the research papers that are published on hppd ect and see how they respond . Lsd might not cause permanent damage in most ppl but studying the brain of hppd patients can give them new insights into how wrong things can go in certain cases . It's definitely something scientists should look into if they truly want to understand the impacts of lsd on the brain .
  6. I see designs and cartoon candy 🍭 looking things when I close my eyes before sleep . They go around and around and get bigger and smaller and eventually disappear.They're literally stuck to each other and move with the same rythm . I'm not quiet sure if it fits in the category cev or whether it's something different. I know that trailings ( which I also have from time to time ) are definitely illusionary palinopsia and therefore brain related but I'm not quite sure about my negative after images . Can negative after images be a part of palinopsia and therefore originating in the brain ?
  7. I have constant negative after images; for example I look at my keys and look away and see a yellow-ish flashing after image . The after images are always either white or yellow looking and only last a second. I just read that negative after images are caused by retinal neurons and not the visual cortex neurons. My question is whether this theory is correct or whether these negative after images can be caused by brain hyperactivity ect and finally: Do u guys know of any cases where these negative after images were severe but eventually totally disappeared ? I'm starting to get worried that many of our visual symptoms might also be related to retinal neuronal dysfunction and not just the visual cortex . Please correct me if I'm wrong . And what about floaters ? Can floaters also be linked to this brain hypermetabolism that was found in the visual snow PET scans ? Is it possible that due to a dysfunction in the brain we are starting to notice them more ? I have to add that I had literally zero amount of floaters prior to this nightmare.
  8. 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 !!!
  9. 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 .
  10. I considered lamictal and keppra but they can both cause dangerous rash and I have a history of getting nasty rashes and allergies plus success rate with lamictal is extremely low . Dutch prof Michel Ferrari had tried with his vs patients without any success . keppra has higher success rates in general. I am hoping that this drug will work for vs :http://www.1storderpharma.com/pipeline/ if it ends up working for tinnitus we might have a chance as well and since it's an improved version of an old anti-epilepsy drug I am hoping that it will be available within 5 years instead of 10 . Although... I donno if I can live with vs for a whole year so leave alone 5 years or more ...
  11. Ur lucky u don't have palinopsia or any additional symptoms so maybe visual snow will go away completely just like Jay said . mine started with vs and few weeks after , palinopsia and floaters appeared. During those weeks I was very anxious due to vs . So try to distract urself as anxiety can worsen ur symptoms or perhaps even give u additional ones . I really hope for u that it goes away completely . No one deserves visual snow . @K.B.Fante how long do u have vs ? I thought u've been having it for 2 years . And how long did u use drugs ?did u have any vs before using drugs? I'm curious about the course/development of ur hppd . As for ur improvement, would u say ur vs has even improved compared to ur high school years or has it gone back to that level? Plus this is something that I'm desperate to know : did anyone's vs go away completely? And how long can it take for it to go away ? And how likely is it that it will go away and never come back ? I want it completely gone !! Even mild version of it is torturous! U guys know a lot about hppd/vs and have been on here for a long time so I hope one of u can answer my questions ( I think Austin will benefit from the answers as well) and perhaps give me some hope or reality check ...
  12. The problem with ssri's is that doctors keep claiming they're safe and that they cause no permanent damage. Unfortunately I trusted my gp and didn't look it up on the internet:( In my opinion ssri's are just as bad as cigarettes . There are ppl who have smoked for 50 years and they're fine and then u have someone who only smoked few years and ended up with cancer. I guess it's the same with ssri's causing visual snow , palinopsia, floaters or any other damage . Again depending on your genes .
  13. I honestly don't know . I'm not qualified to answer these questions but maybe benzo's , ssri's , lsd , xct ect all mess up with our receptors , synapses ect which damages the neurons or changes the way they function. Even so , our genes allow this damage/change . Majority of ppl don't end up in this mess . Hppd/vs is extremely rare or else it would have had attention from many academics ages ago. I think those who get it after heavy drug use probably have stronger genes but not strong/correct enough which eventually leads to damage/change(or death) in neuronal function . Whatever it is there probably is a common pathway and genetics play a huge role so we might need a combination of drug and gene therapy to reverse the visuals or a combination of gene and stem cell therapy. If the visual symptoms totally disappear dp/dr will go away too . But I don't know how or why some ppl have dp/dr without visual snow. I guess their case is more psychiatric and not neurological. Whereas in our case the psychological problems are brought on by the visual disturbances. I've never had dp/dr but vs is making me miserable. I had never experienced depression or anxiety until I got this horrible disease. Looking back I really regret that I took ssri's simply because I was down due to a messy relationship. I thought I was depressed but now I know I wasn't. It was just a normal phase . I really believe that if hppd and visual snow patients unite and start making monthly donations we will understand this disease and get closer to finding a cure . Dividing into different groups isn't a good idea at this stage . Usually researchers start with a common definition and after that they divide them into sub groups such as in epilepsy. A cure will only come if we fight together and get this disease officially recognised!
  14. I think that Visual snow syndrome is basically the same as hppd but they're triggered in different ways . One is drug induced the other isn't although many vs sufferers ( such as myself ) developed vs after ssri withdrawal ( I personally think ssri induced vs is more like hppd due to serotonin ect ). I read about the PET study and hyper metabolism but the researchers do not mention that we're dealing with neuronal death . This is an interview with Dr Goadsby: http://www.bbc.co.uk/programmes/b0735q9m This is one of his colleagues: http://farooqmaniyar.com/visual-snow They're both basically saying: 'The cause of this condition is unknown. Our group used special scans called FDG-PET which looks at the function of the brain2. Comparing visual snow patients with controls, we found increased metabolism (function) in a part of the brain (called occipital area – at the back of the brain). This area is called the lingual gyrus which is one of the additional areas (supplementing the main visual area) that interprets vision. Therefore it is possible that these symptoms are associated with increased activity of stimulating areas or decreased activity in the inhibitory areas along the visual pathway or areas modulating the pathway.' I don't know much about neuroscience so I don't know whether disinhibition or hyperactivity ect can be caused by neuronal death or some sort of GABA chemical imbalance. I'm really hoping that it's not neuronal death because stem cell therapy is still in its infancy. It will take at least another decade for it to work properly and be available in hospitals. I'm more hoping that something such as gene therapy can fix this . Just one injection in the brain to fix the genetic mutation and chemical imbalance. According to scientists most rare diseases are caused by one or few genetic mutations which is why gene therapy is having success with these diseases ( such as the ones I mentioned in my previous post ) . Whether drug induced visual snow or idiopathic , we all had a genetic predisposition to this nightmare it's just that in hppd patients this probably could have been avoided if we had not taken any drugs or antidepressants . Our brains could not handle these substances unlike most other ppl . Visual snow syndrome is a strange disease , some get it out of nowhere, some get it after a sudden migraine aura and some get it from drugs and antidepressants. It's as if the gene is there waiting to get triggered. It is possible that many other ppl have this gene but theirs never gets triggered due to healthy lifestyle or other environmental factors. Dr Goadsby's team are doing Fmri scans soon , hopefully that will clarify things a bit more. As for depth perception - maybe it's because the snow masks ur vision a lot ? I have it at night because the snow is worse in the dark . Vertigo - I've always had vertigo from time to time and many other migraine sufferers have it as well ( I've been having migraines since I was a teenager ) . Either way ,if everyone starts supporting Dr Goadsby's visual snow research we can all benefit from it since the symptoms are the same . One member here ( Gustav I think ) had an appointment with Dr Goadsby . He probably knows more than the rest of us.
  15. Yes I read that they are entering pre clinical gene therapy testing for ALS but I didn't know that they raised money via the ice bucket challenge. I thought the research was funded by the NIH . ALS is well known though . Some celebrities such as Stephen Hawkins have it and Hollywood has made some movies about this disease. I don't think Hollywood is going to make a movie about hppd but Jen Ambrose's visual snow story has a lot of potential. However before she can start talking to the media Visual snow syndrome needs to get recognised which is what Dr Goadsby's main aim is at the moment ( that's why currently we have to donate money to his visual snow syndrome research . It's step 1.) After that they can even try to get funding and research collaborators from migraine trust( as palinopsia and some other vs symptoms seem to be related to migraine ) and they can try to work with tinnitus researchers as well ( those who focus on chronic brain generated tinnitus and not acute inner ear tinnitus such as Auris Medical) . One important thing that vs and hppd patients forget is the fact that even if u have a mild version this thing can get worse any second and end up disabling u . I'm not on fb ever since I got vs but those of u who are can try to communicate on the vs group and remind ppl that this is a serious disease and we need to support research as much as we can . vs can't kill u physically but it can definitely kill u mentally(which is worse because ur gonna get tortured 24/7 for the next 50 decades to come) so instead of spending our money on useless benzo's and poisonous ssri's we should try to donate money and push for research!