Disclaimer: First and foremost I would like to state that I am not a medical professional, but rather somebody who has been officially diagnosed with VSS, a neurological disorder affecting visual and auditory senses, by neurologist Dr. Mark Weatherall. My diagnosis was in April 2019, approximately 4 months after experiencing my first symptoms, and just over 1 year on, I am happy to report that over 90% of my issues have resolved, with marginal improvements month on month. The following is my story, based on my experience: many will read this in the hopes that the changes I made will work for them, and there’s no reason it shouldn’t, but remember that everybody is different, and therefore my recommendations may not necessarily resolve all of your issues. However, several people have now asked for this post and despite it being extremely personal, I thought it would be useful to give others hope that things do have the potential to get better at the very least. Also, please note that the pathology for those with lifelong VS (i.e from birth) and those whom acquired it later in life seem to be vastly different, and as a result, I cannot speak for how my recommendations will affect those experiencing the former. Ultimately, the purpose of this post is for it to be helpful by providing another anecdote: if you have any questions, please do not hesitate to leave a comment and I’ll endeavour to get back to them as soon as I am able.
Also, at the end of my post, I have created a link to a collection of screenshots I collated in relation to improvements and full recoveries made by others. Feel free to check that out too! 🙂
How It Began
After a stressful few weeks in the winter of 2018, I began to experience severe headaches that ranged from aching to stabbing, as well as weird burning sensations that would spread from my head to my face and neck. Around 3 weeks into this, I started to become very anxious – I had never experienced headaches like this before, and as my mother had had a debilitating stroke in her late 20s, I stupidly thought it was my turn. Days filled with little sleep and terrible panic attacks went by, with numerous trips to the hospital, but I was often ignored and sent home with the comment, “It’s just a migraine.” I tried various anti-migrainous medications (propranolol, naproxen, sumitriptan) none of which dulled the pain, and was left to get on with it.
It was in late December that I woke up to what looked like television like static across my entire visual field: everything in sight was covered by a grainy overlay. I felt physically exhausted, dizzy and nauseas constantly, and no amount of rest or medication helped. In early January my symptoms worsened, and I began to experience the following (please note that the dates in brackets refer to how long these symptoms took to resolve completely):
Light and sound sensitivity (3 months)
Static (7 months – gone completely in the day, bit grainy in pitch black)
Strong afterimages (10 months)
BFEP, with excessive floaters (5 months)
Starbursts (10 months, marginally ongoing)
Halos (5 months)
Ghosting (7 months)
Double vision (8 months)
Shaking vision (reduced but ongoing)
Poor night vision (7 months)
2D vision (4 months)
Tinnitus (8 months)
On top of this I experienced non-visual symptoms that included:
Dry eyes (5 months)
Eye pain (4 months)
Muscle spasms and twitches (3 months)
Sinus isses (3 months)
Attacks of numbness and weakness on the left side (2 months)
Chest pain (3 months)
Gastrointestinal issues (2-3 months)
Heart racing excessively on minimal movement (3 months)
Dizziness and disorientation (5 months)
Depersonalisation (5 months)
Of course, the variety of these symptoms led many doctors to believe that I was suffering from hypochondria and anxiety, but my GP wanted to push through and conduct numerous tests to rule out anything sinister. I had extensive bloodworks done, an MRI of my brain, carotid arteries and cervical spine, as well as chest x-rays, abdominal scans and neuro-opthalmological testing. After weeks of analysis, I was given the all clear, but from my research I found that this was quite common for those experiencing VS.
My Appointment with Dr. Weatherall
Despite my tests being negative, I knew something was wrong. I did some investigating and decided to see a neurologist familiar with the disorder to give me some kind of explanation and hope for improvement. After looking at my medical history and doing some tests, Dr. Mark Weatherall quickly confirmed that I was experiencing VSS. He made clear that this is a condition that has only recently gained a lot of momentum, and described the phenomena as a neurological issue stemming from the brain’s incapacity to filter natural processes. Static, after images, BFEP and such are all normal phenomena, even tinnitus, but those who do not have VS are able to filter that information out.
He had explained that he has had patients who have woken up with it after surgery, experienced its onset after a severe migraine or even a concussion, and that its cause is relatively unknown. I have heard of individuals who have had it after giving birth, taking illicit drugs and even had it as a result of taking a vaccine. It seems to be a disorder able to present itself due to various stresses on the body, and although varied in its cause, the way in which it is described across the globe highlights that it is, in fact, the identical phenomena being experienced by everyone.
Based on research, his recommendation of taking B2 (400mg), COQ10 (400mg) and Magnesium Citrate (600mg) came from a time when medical research presented VS to be very closely linked to migraine. He said that although this has been disproven somewhat, there is still a relationship there, and he believes that those who have VS are naturally unable to metabolise the existing B2, Magnesium and COQ10 in our bodies, so supplementing could help. Trying this regime for ideally 6-8 weeks, or for longer if possible, could help your symptoms, but I am aware that some have tried and experienced no improvement in their symptoms. I personally tried this and noticed a gradual improvement, though I have to say I stuck to that regime for around 4 months.
Above all, the best news that came from this meeting was that there is hope. He has seen around 110 patients with VSS and explained it as self limiting, in that he has personally seen individuals, both his patients, and Dr. Goadsby’s (the leading neurologist studying VSS), where symptoms have resolved on their own without medicinal intervention. He stated that some of his patients never came back to him, and he suspects that this is because things had improved or become bearable for them. He also explained that VS often goes misdiagnosed and unreported, and he imagines that there are many people among those individuals who will have improved too, statistically speaking based on results with his own patients. The medication he mentioned to me that has shown some improvement among his patients was Keppra, but I wanted to avoid heavy medications for as long as possible as I know how bad side effects can be, especially after hearing that some SSRIs actually have the capacity to cause VS.
One other important thing he mentioned was anxiety. A lot of the VS community hate hearing this, and at the time, I did too, but there is truth in that anxiety does push this disorder to a level that can become soul destroying. He told me he understands that this condition causes significant anxiety and depression, but the key is to treat both the VSS and anxiety parallel to one another, as one fuels the other. Tolerance to VS symptoms will likely improve if your anxiety is controlled and that made a lot of sense. I found in the first few months my days were spent constantly being afraid of what I saw, but as soon as I accepted that there was no imminent danger, as well as believing I would improve and trying to live a normal life, my attitude and symptoms began improving for the better – but more on the specifics later.
The Course of Action
When all of this began I was in a state of panic: I had no idea what was going on and neither did most doctors. I felt like the future of my health lay in my hands, and I took it upon myself to read hundreds of medical articles pertaining to VS treatment, as well as speaking to those who experienced and overcame VSS. Most recommendations from those who improved, or completely resolved their symptoms, had the same underlying message: address your overall health, both body and mind. This seemed to make sense after a while as since there was no real evident reason for the development of the disorder, at least one a doctor could identify, I thought of it as a powerful warning from my body to me. Something obviously wasn’t quite right, either chemically, hormonally or whatever it was, and I may never know the real answer, but this imbalance had obviously manifested itself in a visual and auditory way, and although depressing, it’s useful because it cannot be ignored. As stressful as it is, after a while I realised that since this disorder could never be ‘out of sight out of mind’, I would always be working hard to address my general health to improve it, if not cure it. Please note that the changes I am about to discuss didn’t result in linear improvement, the journey with a recovery from VS is very much up and down: in fact, 3 months into my regime things got a little worse as my visual field began shaking on movement (kind of like oscillopsia), which didn’t help the already upward battle.
A lot of the VS community online seem to sideline those that improve by insinuating that they are psuedoscience supporting quacks that are bullshitting a vulnerable group of people in order to push an agenda. Though there may be a few individuals that have used VS as an opportunity to make a quick buck, there are too many regular men and women I have spoken to that have simply improved and shared their stories with no links to buy a miracle pill and no overpriced coaching sessions – just an insight into their story. I don’t know if the stubborn refusal to believe that it is possible to improve, and that there is no such thing as a permanat state of being, is due to a feeling of jealousy or due to Western indoctrination so fierce that the idea of anything other than standardised packaged medicine aiding your health has now become inconcevable for most. You need to understand that the list of symptoms I experienced were so intense, and so all-consuming that I was unable to function as a human being for several months. The improvements I have listed are legitimately quantifiable, as I often conducted measurable experiments on myself to see how much progress I was making. For example, when it all first hit, I was unable to see myself in a mirror from 1 foot away due to the density of the static: it was completely distorted and fuzzy. Every few months that went by I realised that I could make my face out from further and further away from the mirror, to today, where I’m standing 10 feet away from my mirror and am able to make out a small coffee stain on my jumper – great, right?
Regardless of any negative attitude towards people who have gotten better, too many people have asked me to share my story. If it benefits even one person, then for me it’s worth it: God knows that I scoured the entirety of the internet in search of people who improved to give myself hope in what was probably the darkest time of my life. I want people to be able to come back to this post and remind themselves that things do get better, and if it got better for me, an ordinary 25 year old London girl who is now able to do normal things like attend a crazy go-karting session (as pictured in the feature image), it can get better for you too. Below are a list of things that I believe aided my development. Before you go on to read these, I want you to understand two key things.
Firstly, this is not a quick fix. The changes you make will not mean you are VS free by next week. These are long term lifestyle changes that are going to be difficult to implement: you have to persevere for as long as you physically can. It took a whole year for me to see changes, and people that I have met in the VS community have improved after 2, 3, and even 7 year marks. Everybody is different, every case of VS is different and thus: every journey to improvement will be different, which leads me smoothly on to my second point.
Making these changes might not necessarily cure you as it did me, but I need you to take into consideration that a majority of the anecdotes you find online regarding improvements encompass the below details – and that isn’t a coincidence. If after making all the effort of change, you don’t see any positive changes to your vision, I can at least guarantee that it will improve your overall health, which will put you in better stead to deal with all the problems that VS may cause for you and more. And who knows, maybe in several years, it may all just disappear as randomly as it appeared. All I know is, if somebody told me this when it first hit, I’d make every change possible even if there was only a chance as little as 1% that meant I’d be closer to my normal self in the future, and for me it worked for the most part.
1. Extensive Testing
The most important thing to address when all of this happens is that you have extensive testing to ensure that there is nothing more serious going on in the background. For most, VS is relatively benign in that it has no immediate health impact other than the distortion of your visual, and for the extra lucky, auditory senses. However, some people can experience VS as a result of more serious medical complications such as Multiple Sclerosis, and so, to give yourself peace of mind, you need to be able to comfortably say that you have done enough testing to know it isn’t something imminently dangerous. There is a bit of an issue with this step however, as when you have an illness that is confusing to almost every medical professional you speak to, you find it hard to stop the testing period. I personally spent months in this phase because I wanted to be sure that I wasn’t dying, which I felt like I was. I had diverse symptoms that sent me to numerous medical departments, and there were times where I felt absolutely exhausted from being in hospitals and being sent away, to the extent that I came to the realisation that trips to A&E were not solving my problems, they were worsening them due to the stress, anxiety and depression it was causing to be turned away with no aid.
What I would suggest is that you prioritise appointments with your GP for generic bloodworks and xrays, as well as getting a referral to a neurologist and neuro-opthalmologist, who will undoubtedly want to see MRIs of your brain. If you have other symptoms, like gastro issues (which I had) it might be worth getting an abdominal scan: though when I got mine, it was all clear. The point I’m trying to make here is do what you need to do to ease your mind, but realise that you may be chasing an answer that the medical community may not have, and this relentless chasing will tire you and depress you to no end. After you’ve done what you need to reassure yourself that you aren’t going to drop dead in a few weeks, just stop. Of course keep seeing your neurologist and undertake treatment plans that they propose with your own discretion, but stop hunting for an answer, because guess what? 95% of the people I have interacted with on the VS group on Facebook (which has now amassed more than 10,000 members) have no real medical problems other than VS itself. If you stop looking for answers regarding why it happened and what specifically is happening, you can focus your energies on making changes to fix it, even though it’ll be a bit of a stab in the dark at first. At the end of the day there are no real medications that can fix this, and there are no obvious processes recommended by doctors, so you have to try things and listen to your body, which is the next best thing. After all, isn’t that how we survived and evolved over the last two millenia?
Recognising the validity of the statement, “Let your food by thy medicine and medicine be thy food” my first course of action was to address my diet. At the end of the day, what we put into our bodies has a huge impact on our health. Things like processed food and sugar alter our brain chemistry, and the hormones injected into our food interfere with our own hormone regulation, so there was certainly a lot to consider. My diet has always been relatively clean, as I never eat ready meals and hardly ever have junk food, but I did have a lot of takeaways in my time, as well as the occasionally crap that slipped through. Please do watch documentaries such as ‘What the Health‘, ‘Forks Over Knives‘ and ‘Supersize Me’ – all of which are available on Netflix. Although I am not promoting veganism, these documentaries provide a great insight into how certain foods can affect our body, with particular focus on the impact of processed foods, which is where I took most drastic action.
When it came to my diet overhaul, I initially just cut out as much processed food as possible. If it came in a packet, or had an ingredient in it that wasn’t a raw, natural food, I didn’t have it. I genuinely just reverted to having clean organic meats, vegetables and fruits for about 7 months and did my best to cut out processed sugar as much as possible – of course, as I got better over time, I became a bit more relaxed with these rules, but by and large, I stuck to it. This doesn’t mean that your food now has to be bland and boring, but rather you need to really take care of what chemicals, additives and preservatives you are ingesting. Many packaged goods you’ll grab off the shelves will still contain E numbers, MSG and other toxic rubbish, and if you want your body to heal, the best starting point is giving it the nutrients it needs. I understand that fresh foods, especially those that are organic, can be very expensive and out of reach for most, but I urge you to consider the cost of your health. It’s invaluable.
I think one of my greatest developments occured when I started seriously researching the health benefits of various supplements and incorporating them into my regime. Although your vitamins and nutrients are best taken from the food you eat, sometimes one’s diet simply may not be varied enough to ensure that the minimum daily recommended allowances are achieved. Furthermore, many people’s bodies are unable to efficiently metabolise vitamins to the extent that an adequate amount is absorbed into the body. There are also numerous other factors that affect your vitamin intake, a common one, for example, is that countries in the Northern hemisphere do not often get enough sunlight, which causes a lack of Vitamin D, an absolutely vital vitamin for our body, in entire populations.
What I would first do is try to get a blood test to see if you have any deficiencies, and base your vitamin intake on that, but the vitamins I have used the last 8 months or so are listed below, seperated by essentials (ones I took every day without fail) and additionals (ones I took in short bursts here and there based on how I was feeling). I cannot stress enough that you do your own research on this to ensure you understand the purpose of each vitamin, what dosages are appropriate for you, as well as which ones contraindicate the others – for example, never take Iron and Zinc at the same time as it can cause gastrointestinal distress. I cannot specify the quantities I was consuming for every one below as every individual is different and should base their intake on recommended daily allowances, however whilst some vitamins are fat soluble, meaning they dissolve best when consumed with food, others are water soluble, meaning you can take them with water at any time to ensure optimum absorption. Again, do your research on this and ensure you have a regime set in place if you are going to try supplements, as it would be pretty awful to have dished out a whole load of cash on supplements, only for them to be consumed incorrectly and thus, not metabolised by the body.
The brand I used has exclusively been Viridian (unless otherwise stated in brackets) on the basis that they are organic, clean supplements with no added sugar or copper. But there are many reputable brands across the world (another being Solgar) and as long as you check the ingredients to make sure there are no random additives in the capsules, then it should all be fine.
Omega 3 Fish Oil 1200mg (Wiley’s)
Vitamin D3 2000iu
Magnesium Citrate 300mg x2
COQ10 200mg x2
Bilberry and Eyebright
Spirulina (Synergy Natural)
Chlorella (Synergy Natural)
Exercise is a really important one, not just for your general health, but for healing your body in times of mental and physical weakness. When we exercise, our brain releases various chemicals that boost our immune system and improve the functioning capacity of our bodies. I hardly ever exercise unless I’m trying to lose weight, but in this instance, around 6 months into VS I really started taking it seriously after hearing that people who improved their VS had incorporated things like cardio and yoga into their daily routines. It really doesn’t have to be too technical, as long as you get your heart rate up for at least 30 minutes each day, even if it is walking your standard 10,000 steps a day at speed, it’s enough. I’m no scientist, and really wouldn’t do the specifics justice, so I have linked a Ted Talk that excellently explains the various benefits of exercise and how it changes our brains for the better.
When my headaches first started appearing, the anxiety and worry meant I was getting about 3-4 hours of sleep a day, for several weeks. I felt depressed, run down and exhausted on top of all the symptoms, and it was when I really started focusing on getting good quality sleep that I began to regain the energy, motivation and mental stability required to improve. People don’t really realise that good quality sleep is as important to our bodies as food and water, after all, we spend a third of our lives doing it. Moreover, our bodies are designed to rest and repair during sleep, and I found that the more I was getting regular, undisturbed sleep, the better I was feeling the next day. I think exercise really helps with this: if you are active enough during the day, you will be as physically tired as you are mentally, and so when you get into bed you are more likely to fall asleep quickly and stay asleep until the morning.
What really worked for improving my quality of sleep was setting blue-light filters on my electronic devices to ensure my body is ready to shut down by the end of the day, not drinking any water 3 hours before bed time so I wouldn’t wake up in the night, and most importantly, setting up a regular sleeping schedule that meant I was sleeping and waking up at the same times everyday for as long as I felt I needed to. Some people only really need 6 hours of sleep, but I feel my best at 7 to 8 hours each night. I would try to ensure you are asleep by 11pm, as deep sleep is best achieved in the earlier hours of the evening.
6. Preoccupation – Family, Friends, Hobbies and Work
Another thing that really helped me survive the initial stages of this was preoccupying myself, initially with family and friends, as I was in no shape to engage with hobbies or work. Of course the topic of conversation was always around my illness, but even so, the point is essentially to get out of your own head and interact with other people to stay sane. A lot of the first weeks involved sitting around with my family and chatting, crying and talking about life. As time went on, we sat around watching shows or going for walks. I know I can say for sure that my boyfriend is probably now triggered by every board game on the planet as all we did day in and day out for a good few months was play boardgames, as I was reluctant to look at screens.
It is difficult, but you have to preoccupy your mind with other things to ensure that your primary focus isn’t your visual problem. I know that it is hard for it to be out of sight out of mind, but in the end, I found that despite being a visual problem, that is not true. I am absolutely certain that any time I was deeply engaged in something, I was able to cast my mind aside of the visual difficulties that often initially got in the way. This took a lot of time, but it did happen in the end. Even now, with some residual symptoms, I go by days without thinking about any of it, and that shocks me since at the start, I thought about it every minute of every day.
When I started to improve a little, I pushed myself to get a part-time job to give me some diversity with regards to my day-to-day. My family have an organic wholefoods store, so I worked there for 5 hours one day and it was probably the most horrendous experience of my life. I was tired, dizzy, disoriented and confused. Everything was shaky and miserable, and interacting with customers put me on edge. At the end of my shift, I went home and cried, and felt pathetic that I couldn’t even manage a shift at such a simple job. I didn’t want to go back, and I actually didn’t for a few weeks, until I plucked up the courage to go again. It was still crap, but I just kept pushing myself and trying until I realised that at about 10 attempts in, I felt absolutely fine. I wasn’t dizzy, it wasn’t too much and I could do it. After two months I went back almost full time, doing roughly 30 hours a week, and although I was exhausted, I was training my body to do it, and it was doing it successfully. Roughly 3 months on from that, I was functioning as I normally would have, and was ready to get back to my original profession.
It’s now been almost 4 months, and I am working full-time at a FTSE50 data company as a Client Relationship Manager, and I am having no difficulties. A lot of my symptoms have disappeared of course, but even the residual ones I barely notice because I am so engrossed in enjoying my time and growing my skills at work. Also, I don’t know if you have noticed, but being in an educational or working environment means you are interacting with other people, which means that it isn’t always about you and your problems. You realise that there are dozens of people around you with their own issues and hardships, and that despite it all, everyone wants to talk about work, politics, TV, music etc. It is good, both for your mental and physical health, to work up towards throwing yourself back into these environments if VS has made you withdraw from them. It helps your brain shift focus, and in my mind, that shift in focus has almost made me forget the VS altogether. There are times I sit there and I force myself to see an afterimage like I used to, and I just can’t see it. It’s almost as if casting it aside has made my brain completely forget what it all looked like during the severe stages. I still do see minor afterimages if I am in pitch black and look at my phone screen and look away, but I no longer get it off random objects and people in the day, which I used to get all the time.
My point is, remember what you loved doing and do it again. Of course, start small: speak to your friends, go swimming, do some colouring, listen to music, cook a meal etc. Then let it grow: start exercising, watch shows, play games, go to a restaurant, try a part-time job etc. All I know is, I started small and I kept pushing myself to reach normality, and after a year, I’m finally there.
I was always the type of person to laugh at things like accupunture, and cast it aside as random mumbo jumbo that people were conned into. But of course, desperate times call for desperate measures and in the end, I gave it a go because I was willing to try absolutely anything to get better.
Boy, was I wrong. I partook in around 10 weeks of accupuncture and it was probably one of the best decisions I ever made. When you go to an accupuncturist, initially you’ll have a consultation where you can discuss all the issues you are having, and the consultant will then decide on the best approach for treatment. Although the first few didn’t make me feel any different, after a while I had a greater sense of energy and clarity. It was in this period that my BFEP had significantly reduced, as well as a lot of the flashing and weird visual anomalies. I also had loads of gastrointestinal issues and body pain that were completely eliminated in this period, which I think was aided by my taking up yoga too.
I really think speaking to a professional in the initial stages of this is quite important, as going through a complicated illness that not many people understand is absolutely heartbreaking and demoralising. You have essentially experienced a trauma, and some may even say a bereavement with regards to health, and so talking through your emotions with somebody that can help break down negative thought patterns might be useful to you.
I spoke to a CBT trained counseller for about 3 months at the start, and after I had felt like I had spoken through everything I needed to, I stopped seeing her. Therapy seems to have a stigma around it, but it is essentially just an opportunity to discuss what’s on your mind with an impartial individual, who is trained in techniques to help alleviate some of the emotional difficulties you are having. What I would say is, don’t knock it ’till you’ve tried it – it certainly helped me!
The human memory is a fickle one, and sometimes we are unable to remember absolutely fundamental changes in our lives. Especially when it comes to illness, we can become complacent and forget how far we have come.
One thing that genuinely helped me through this was making a list of symptoms I had at the start. Originally, I had done this to share with my doctor, but what I actually found over time was that I was using it for something much more important to me.
You see, when I first got sick this list was huge: there were about 25 different things under a heading of ‘Symptoms’ in the notes app on my iPhone. But over time, I had to create another title underneath called ‘Improvements’, which is where I would move a symptom I no longer had. Of course the first time I did it, it didn’t look that impressive. 24 symptoms and 1 improvement in a month, great! But over time, as things changed and improved, the improvements category got bigger and the symptoms category got smaller. When there were ever occasions in my journey where I felt that I had stagnated with regards to improvement, or I just felt as though nothing had changed and I was still living in hell, I was able to refer to my list to remind myself how far I had really come.
Make a list, and make it extensive, and as things chop and change, update it. If you ever forget where you were at the start and where you are now, reminding yourself will give you a huge mental boost, and keep you motivated to reach the end goal of completely eradicating your symptoms category.
Understanding the significance of neuroplasticity is extremely crucial – our brains don’t just stop developing and changing when we reach adulthood. Everything we do and don’t do impacts our wellbeing.. that includes each and every thought. Whether or not something is real or imagined, neurons fire in our brain and chemicals are released. From a neuroscientific perspective, imagining something and doing something aren’t always that different. An example is from Norman Doidge’s book, The Brain That Changes Itself. Some neurologists conducted an incredible experiment: they told one group of people to raise their index finger up and down 15 times, 3 times a day for a month, and they told another other group to imagine in detail lifting their index finger 15 times, 3 times a day. By the end of the month, the group who physically did it gained 30% muscle mass on the finger and the group who imagined it gained 22%. This is not an isolated incident. Scientists all over the world have proven the power of visualisation, meditation and exercise in healing and improving the way our brains function. That’s why, it certainly makes sense that the account of people with improved VS have taken up such things as extensive exercise, mediation, healthy eating and much more. Most of all, the people who seemed to have gotten better are also those who have adopted positive attitudes. Achieving these things take time and patience: being positive in a time like that can be very difficult but I cannot stress enough that it was this shift in outlook that was one of the greatest steps I took to improve my vision. And even if the end result isn’t what you wanted, you will have gained a healthier body and mind with brilliant strategies to cope with the anxiety and depression that this disorder can bring. Once you have those strategies, you have equipped yourself for anything that may come your way for the rest of your life. I am absolutely certain that changing your attitude is the biggest step, and a documentary titled Heal on Netflix is an excellent one to watch on that.
I’d also really recommend reassessing how you utilise social media to monitor your situation. A lot of people with VS have joined the Facebook group and use it to ask questions and monitor updates on developments in the VS world, but this can be both a blessing and a curse. Although the group had been very useful to me in the initial phases of getting VS, I found that I became very obsessive and spent hours a day browsing it, to the extent that I wasn’t doing much else because all I wanted to do was reassure myself that what I was experiencing was normal. The problem with this is that your life becomes completely orientated around VS, and you are constantly seeing panic-stricken anxious updates from people about all of their different issues that may not necessarily apply to you, but that you may suddenly start noticing – which is an incredibly dangerous situation to put yourself in.
The group is a useful thing to be a part of at the start to meet like-minded people and ask some burning questions, but after you have taken what you need (which for me was anecdotes regarding improvements to reassure myself that things would get better) I recommend you leave the group, at least until you are more emotionally stable, so that the posts on there do not feed your anxiety and fears. Remaining in the group for extended periods of time can have a negative impact on your attitude, which I believe will seriously impact your recovery. Many people who have improved had left the group in order to preoccupy their minds with subject matters other than VS, and that is a really important factor to consider for your general wellbeing and mental health.
To those of you struggling, I know how hard things can be, and it’s never a suffering contest, because your pain is valid, but I ask that you try to be grateful for what you do have. The woman in this video I have linked at the end is deaf and blind, and still finds a way to find joys in life. She is relatively independent, and even boards trains on her own to travel by using the sensations of movement to determine where she is. My own mother had a stroke 20 odd years ago and doesn’t have the use of her right arm and leg and is often in pain, but she is still happy and grateful for what she does have and is living a full life eating good food, travelling to see her family, going shopping and gaming. What has happened to you and I is saddening, and it may have robbed some months and years from us, but try not to waste too much time wondering why it happened and wondering why things aren’t getting better when you aren’t changing things up to see what helps. If you want change, you have to make change, and the best you can do is try.
Acceptance is something I hated hearing in the initial phases of all of this as I absolutely refused to accept the fact that this was my life, and I was stuck with shitty vision and what many would consider, ‘a broken brain’. But I don’t want you to accept your current state and move on with your life, I simply want you to accept that this is how things are for now. It does not mean you are stuck like this, nor does it mean that your situation cannot improve, but simply taking a moment to accept that you are going to have to deal with VS for a chapter of your life will genuinely help you recover. Below is an amazing video that highlights the sentiment, “You are not stuck with the brain you have, you can make it better.” It is Ted Talk from a man who has conducted studies based on 87,000 brain scans, with evidence that you have the power to improve your brain function through simple lifestyle changes – ones that I have already mentioned, in fact.
I’m Not 100% Just Yet
A stark reminder to you all that although I have seen miraculous improvements over the last year, I am not 100% yet – rather lingering at around the 90%-95% mark. My vision still jitters when I walk, and there are moments that I do have bizarre visual anomalies, but those don’t bother me because I always remind myself how far I have come, and how few of those original symptoms I have left. I feel happier, stronger and healthier, and I have gone from being bed bound, depressed and crying for months to having a brilliant full-time job and social life packed with activities ranging from dinners to demanding holidays. When I first got VSS I genuinely thought my life was over and that I could no longer be normal, but if anything, I am now more appreciative of my life and am living it to the absolute fullest with nothing holding me back. Anyone can get better, and many people have. Don’t let somebody else tell you that your VS is permanent when people are recovering from ‘terminal’ cancers and life-threatening strokes every day.
Evidence Beyond Myself
As I said earlier on in this post, I scoured the entirety of the internet (facebook groups, reddit, youtube, VS tapatalk forum and personal blogs) to find stories of recovery. One of the things that really helped me get through the first couple of months of this was knowing there was a way out: that if it was possible for at least one other person out there to cure themselves, there was no reason why it wouldn’t be possible for me. So I spent several days collating screenshots of posts I found online that indicated positive changes and saved them in a folder. In times of fear, worry and doubt, I would look through them and remind myself that it can get better, and if I ever felt as though I was stagnating with my recovery, it would remind me that people improved at different rates. I used to look at those screenshots for hours a day, and then it gradually turned to once a week, to once or twice a month, to if I randomly had a low mood. It has now come to a point where I don’t actually remember the last time I looked at them, but despite not using them anymore I still appreciate their value, and so I would like to share it with you. If you click this link, you will be taken to a post with all the screenshots I took. I hope that in addition to my story, the several hundred short stories on there will push you in the right direction to recovery by reiterating the first step: believing that it is possible.
I hope that this post gave you some hope to carry on fighting this thing, and that it is a useful source of information to come back to. I will likely post an update 6-12 months on from this to catch you up on how I’m doing, so if you would like an update on that please do follow my blog from the link on the right of this page – that way you’ll receive an email every time I post on here. 🙂