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Everything posted by SaraSara

  1. This medication seems interesting. It's a Gaba modulator . It will be on the market soon . I hope it will work for vs/hppd .
  2. 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 .
  3. 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.
  4. Ok I have some news . Apparently some ppl with vs have strange electrical retinal activity . I had read about this on here : 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.
  5. Thanks David learned something new .
  6. This is great news ! what did u do to improve ur symptoms?
  7. 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.
  8. 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.
  9. 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 .
  10. this is a drug that is currently being developed and tinnitus is one of the diseases they are trying to target together with other cns hyperexcitability related disorders. This drug seems to be related to retigabine which apparently caused vs in some patients ( based on what I read online) that's why I am not quite sure if this drug offers any hope for vs and hppd sufferers however I would love to hear from those of u who know more about vs ( in scientific terms) . I know that there is a link between vs and tinnitus that's why I am hoping that this drug can also be used to treat vs and hppd .
  11. 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.
  12. I've been suffering from vs and palinopsia for 6 months now and since last week after a migraine attack it got worse . Before the migraine attack my visual snow was actually becoming less . Should I start Clonazepam ? Is it effective in reducing the visuals ? My main prob is vs itself. I should add that I got vs from ssri's ( if I'm correct ssri's, lsd and xct share some similar properties ) and I feel extremely depressed ever since I got vs . I've had a lot of suicidal thoughts ,therefore I donno whether to start a med and if so which one should I give a try ? Finally I would like to add that I appreciate all the support I've received so far from the members here . It's a quiet but helpful , kind , open minded and compassionate community.
  13. 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 .
  14. 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.
  15. @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 .
  16. 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 .
  17. 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 ?.
  18. 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.
  19. Someone on the visual snow fb group posted this . U guys might wanna read it , The person who wrote this believes that we need a combination of gene and stem cell therapy: '' I spend a lot of time researching how our nervous system works and what may contribute to the development of Visual Snow and other symptoms. Remember that there is a lot of vital information that I do not know, and may greatly benefit our understanding of this condition. Visual snow is described as an "epileptic" firing in the visual system in the brain. NMDA glutamate receptors, which are overexpressed after excitotoxic injury may well be the trigger of an increased spontaneous firing in the nerves. In turn, the brain would decode this increased firing as "visual snow" The idea is that remaining nerve endings have been damaged enough to overexpress NMDA Glutamate receptors, thus increasing their spontaneous firing. There are various factors that contribute to the development of this condition. Everybody first had an initial trigger, and this varies from person to person. Common causes include stress, trauma, recreational and prescription drugs, Lyme, mold, heavy metals, and other toxic exposures. But what they all result in is brain injury and neuronal damage. The consequences of such injury doesn't just cause break in communication between healthy neurons, but a cascade of events that can lead to further neuronal degeneration and cell death. That is where visual snow comes in. Think of a broken radio or a TV where it isn't able to receive and process incoming signals so the outcome is a lot of visual/auditory noise. Our brains behave in a similar manner when there is an interference with proper neuron function and communication. I strongly believe there are some genetic components that play a huge role in the development of Visual Snow and makes some individuals more susceptible to developing it. They are unknown as more research will be needed in this aspect. Medical researchers searching for new medications for visual snow often look to the connection between the nerve cells in the brain and the various agents that act as neurotransmitters, such as the central nervous system's primary excitatory neurotransmitter glutamate. Visual snow can be caused when damaged brain cells emit an excess of glutamate. Many treatments use ingredients that work as glutamate antagonists, or inhibitors. Communication between nerve cells in the brain is accomplished through the use of neurotransmitters. There are many compounds that act as neurotransmitters including acetylcholine, serotonin, GABA, glutamate, aspartate, epinephrine, norpinephrine and dopamine. These chemicals attach to nerve cells at specific receptors that allow for only one type of neurotransmitter to attach. Some of the neurotransmitters are excitatory; leading to increased electrical transmission between nerve cells. Others are inhibitory and reduce electrical activity. The most common excitatory neurotransmitters are glutamate and aspartate while the primary inhibitory neurotransmitter is GABA. It is necessary for excitatory and inhibitory neurotransmitters to be in balance for proper brain function to occur. Communication over synapses between neurons are controlled by glutamate. When brain cells are damaged, excessive glutamate is released. Glutamate is well known to have neurotoxic properties when excessively released or incompletely recycled. This is known as excitotoxicity and leads to neuronal death. Excess glutamate opens the sodium channel in the neuron and causes it to fire. Sodium continues to flow into the neuron causing it to continue firing. This continuous firing of the neuron results in a rapid buildup of free radicals and inflammatory compounds. These compounds attack the mitochondria, the energy producing elements in the core of the neuron cell. The mitochondria become depleted and the neuron withers and dies. Excitotoxicity has been involved in a number of acute and/or degenerative forms of neuropathology such as epilepsy, autism, ALS, Parkinson’s, schizophrenia, migraines, restless leg syndrome, tourettes, pandas, fibromyalgia, multiple sclerosis, Huntington's, seizures, insomnia, hyperactivity, OCD, bipolar disorder and anxiety disorders. (Doctors use two basic ways to correct this imbalance. The first is to activate GABA receptors that will inhibit the continuous firing caused by glutamate. The second way to correct the imbalance is use antogonists to glutamate and its receptor N-methyl-d-aspartate (NMDA). These are termed glutamate or NMDA antagonists. By binding with these receptors, the antagonist medication reduces glutamate-induced continuous firing of the neuron. This explains why some drugs like clonazepam and lamictal are able to help relieve symptoms in some patients. They help reduce excitatory action in the brain temporarily) Anxiety, depression, brain fog, depersonalizations, visual disturbances (including visual snow, palinopsia, blue field entoptic phenomenon, photophobia, photopsia) headaches, tinnitus, are all common symptoms associated with increased excitatory activity in the brain. Excessive glutamate is the primary villain in visual snow. Included below is a list of things that can lead to excitotoxicity. The list includes trauma, drugs, environmental, chemicals and miscellaneous causes of brain cell damage. (Keep in mind everybody's bodies behave and react differently to various substances) -Severe Stress (Most people that are stressed out don’t realize that once the fight-or-flight response gets activated it can release things like cortisol and epinephrine into the body. Although these boost alertness, in major concentrations, the elevated levels of cortisol over an extended period of time can damage brain functioning and kill brain cells) -Free Radicals – Free radicals are highly-reactive forms of oxygen that can kill brain cells and cause brain damage. If the free radicals in your brain run rampant, your neurons will be damaged at a quicker rate than they can be repaired. This leads to brain cell death as well as cognitive decline if not corrected. (Common causes are unhealthy diet, lifestyle and toxic exposure) -Head Trauma (like concussion or contusion) MRI can detect damaged brain tissue BUT not damaged neurons. -Dehydration (severe) -Cerebal Hypoxia -Lyme disease -Narcolepsy -Sleep Apnea -Stroke -Drugs (recreational or prescription) -Amphetamine abuse -Methamphetamines -Antipsychotics -Benzodiazepine abuse -Cocaine -Esctasy -Tobacco -Inhalants -Nitrous Oxide -PCP -Steroids -Air Pollution -Carbon Monoxide -Heavy Metal Exposure (such as lead, copper and mercury) -Mold Exposure -Welding fumes -Formaldehyde -Solvents -Pesticides -Anesthesia -Aspartame -MSG (Monosodium Glutamate is found in most processed foods and is hidden under many various names) -Solvents -Chemotherapy -Radiation -Other toxic exposures Inside the Glutamate Storm By Vivian Teichberg, Ph.D, professor of neurobiology "The amino acid glutamate is the major signaling chemical in nature. All invertebrates (worms, insects, and the like) use glutamate for conveying messages from nerve to muscle. In mammals, glutamate is mainly present in the central nervous system, brain, and spinal cord, where it plays the role of a neuronal messenger, or neurotransmitter. In fact, almost all brain cells use glutamate to exchange messages. Moreover, glutamate can serve as a source of energy for the brain cells when their regular energy supplier, glucose, is lacking. However, when its levels rise too high in the spaces between cells—known as extracellular spaces—glutamate turns its coat to become a toxin that kills neurons.* As befits a potentially hazardous substance, glutamate is kept safely sealed within the brain cells. A healthy neuron releases glutamate only when it needs to convey a message, then immediately sucks the messenger back inside. Glutamate concentration inside the cells is 10,000 times greater than outside them. If we follow the dam analogy, that would be equivalent to holding 10,000 cubic feet of glutamate behind the dam and letting only a trickle of one cubic foot flow freely outside. A clever pumping mechanism makes sure this trickle never gets out of hand: When a neuron senses the presence of too much glutamate in the vicinity—the extracellular space—it switches on special pumps on its membrane and siphons the maverick glutamate back in. This protective pumping process works beautifully as long as glutamate levels stay within the normal range. But the levels can rise sharply if a damaged cell spills out its glutamate. In such a case, the pumps on the cellular membranes can no longer cope with the situation, and glutamate reveals its destructive powers. It doesn’t kill the neuron directly. Rather, it overly excites the cell, causing it to open its pores excessively and let in large quantities of substances that are normally allowed to enter only in limited amounts. One of these substances is sodium, which leads to cell swelling because its entry is accompanied by an inrush of water, needed to dilute the surplus sodium. The swelling squeezes the neighboring blood vessels, preventing normal blood flow and interrupting the supply of oxygen and glucose, which ultimately leads to cell death. Cell swelling, however, is reversible; the cells will shrink back once glutamate is removed from brain fluids. More dangerous than sodium is calcium, which is harmless under normal conditions but not when it rushes inside through excessively opened pores. An overload of calcium destroys the neuron’s vital structures and eventually kills it. Regardless of what killed it, the dead cell spills out its glutamate, all the vast quantities of it that were supposed to be held back by the dam. The spill overly excites more cells, and these die in turn, spilling yet more glutamate. The destructive process repeats itself over and over, engulfing brain areas until the protective pumping mechanism finally manages to stop the spread of glutamate." Recent research has confirmed that hypermetabolism has been primarily found in the right lingual gyrus and left cerebellar anterior lobe of the brain in individuals suffering from visual snow. The definition of hypermetabolism is described as "the physiological state of increased rate of metabolic activity and is characterized by an abnormal increase in metabolic rate." Hypermetabolism typically occurs after significant injury to the body. This means that the brain is trying to compensate for the injured areas in the brain by increasing metabolism to meet it's high energy demands. It is trying to function to the best of it's ability under the circumstances. Normally the body can heal itself and regenerate under the right circumstances. But it is extremely difficult for the central nervous system - which includes the spinal cord and brain to be able to do so, due to it's inhibitory environment which prevents new neurons from forming. That is where stem cells come in. Stem cells are an exciting new discovery, because they can become literally any cell in the body including neurons. This is an amazing scientific breakthrough and has the potential to treat a whole host of conditions. Scientists are currently doing research and conducting trials. Excitotoxicity can trigger your "fight or flight" response. If the brain and the body remain in the sympathetic fight or flight state for too long and too often, it is degenerative; it breaks us down. If this cycle continues, then eventually the system burns out. It is this cycle that results in autonomic nervous system dysfunction. The results are disastrous, digestion is shut down, metabolism, immune function and the detoxification system is impaired, blood pressure and heart rate are increased, circulation is impaired, sleep is disrupted, memory and cognitive function may be impaired, neurotransmitters are drained, our sense of smell, taste and sound are amplified, high levels of norepinephrine are released in the brain and the adrenal glands release a variety of hormones like adrenalin and cortisol. I believe in order to find a treatment or cure for VS and it's accompanying symptoms, we need to address the underlying cause, reduce the excess excitatory activity in the brain, repair the damaged neurons, regain proper communication between neurons, rebalance the autonomic nervous system and prevent further cellular damage. We also need to figure out what genes, if any come into play. There is still a lot we don't know about the brain because it is such an remarkably complex organ. ''
  20. 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 .
  21. Hmmm , it says it can cause headaches. I already have migraine . But I might give it a try as long as my vs won't get worse. Thanx☺️.
  22. Thanx for the advice guys pff that's scary . Unfortunately I'm not a strong person and I'm already suffering from extreme depression and suicidal thoughts... I can hardly deal with mild vs .I guess I have to reconsider it?.
  23. I recently made a fb account just to join the visual snow group however I can't seem to access that account anymore. I only joined to spread awareness about the fact that rare diseases can be cured if we all just donate money . As I expected the group was just full of ppl who don't believe a cure will be found because visual snow is rare . Everyone on the fb visual snow group is miserable but none of them is willing to donate money because there aren't enough scientists working on visual snow syndrome . What they seem to forget is that we don't have enough scientists due to lack of funding. There are more than 6000 ppl on the fb vs group I'm sure half of them can afford to become monthly donors or even donate few thousand dollars a year . Once visual snow syndrome gets recognised we can raise more awareness and interest from other scientists and perhaps apply for grants . just look at Rett Syndrome, another rare disease than only affects 350.000 ppl worldwide and yet they are close to finding a cure : something like this might also be the case for visual snow . And we might be able to get something like gene or stem cell therapy. Please try to repost this on the visual snow fb page to encourage ppl to donate. I can't seem to make an account anymore. We all want a cure even those who have a mild case secretly want to see in a normal way again . All they need is some inspiration and hope . Yes it will take time but better late than never . and who knows we might get to the bottom of this disease within few years just like in Rett Syndrome.
  24. I joined the fb vs group . As I thought ,they're all miserable but none seem to be donating money . I understand that some ppl might not be able to afford anything but I think that most of them can afford to do so . But they all think that vs can't be cured because it's not recognised yet and it's very rare . I posted about Rett syndrome ect and that we could do the same thing but it has no effect. I guess they're all so disappointed with the health care system due to the fact that they always dismiss visual snow and don't take our suffering seriously . I do believe that their attitude can change once visual snow syndrome gets officially recognised as a neurological disorder . I can't wait to see a NHS dedicated page for visual snow . There's literally everything on the nhs info section except for visual snow . im gonna deactivate fb soon . It just gives me negative vibes . Plus looking at pictures really disturbs me?I can't see them in a normal clear way . I really loved photography, art , movies ect and now ... As for immediate solution TheMythos , I guess u have to try out keppra or something but I've read some nasty stuff about it on the vs group so I donno's so scary to try anything for this disease. What works for someone seems to worsen the entire disease for someone else ...
  25. I had no prob reading on my phone but now the letters look weird . Also pictures look worse . I was starting to see pics a bit better?This is just such a horrible disease. I hope ur right and that it will go back to its previous state . Btw I got visual snow syndrome from ssri's but pretty much the same shit as hppd . Both drug induced.