New blog page: Visual Snow

Visual Snow

This page features a video introducing VS to those new to the condition. I will also soon add my own personal VS story.

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Video: Visual Snow for Beginners

Visual Snow for Beginners: http://youtu.be/0V-XFbah0LM

For anyone who read my post on this topic, this video may help to summarise that information a little better.

For those that haven’t heard of this condition, I would be grateful if you could spend a few minutes of your time to familiarise yourself with it. The more people that know about it, the better. It’s about time that people could discuss their symptoms with their doctor, without receiving a look of bewilderment. Thank you.

Health Update: Numbness and other stories…

It’s been a while since I have given an update on my symptoms and medical results. Not much had happened over the last few months in terms of medical appointments and, thankfully, new or worsening symptoms.

In fact, there had been no change at all until approximately two months ago. That is until the top of my left thigh went numb. I was gutted; it had been a good while since I’d had any weird skin sensations (or lack of, I should say). I went to my GP (a woman that I haven’t seen until recently, and who, so far, seems to actually take me seriously).

She got me booked in for some blood tests and an X-ray of my lower back and pelvis. The bloodwork came back normal, as usual. The X-ray showed that I have a curvature of the spine in the lumbar region, but she didn’t seem too worried about this as it didn’t appear to be pinching any nerves.

Since there was nothing obvious causing the numbness, she will refer me back to the neurologist. Although I probably won’t see him/her for months, and the sensation in my leg has improved somewhat during the last month or so anyway, I am happy to be seeing the neurologist again.

The last time I saw one was as an inpatient in hospital two years ago. Because I had been admitted at that time, they did a decent investigation, including an MRI of the brain, an MRI of the vascular system in the head, and a lumbar puncture (a.k.a. the demonic procedure from hell – sorry if you’re due one! The procedure itself is OK – although they were prodding around for ages trying to get a sample and only one of the top doctors managed, which, now I think about it, could be because of the curvature – but I got a horrible fever and spent the next 24 hours throwing up, and then the following four days horizontal with a bar-steward of a headache every time I sat up).

Anyway, they found nothing abnormal apparently. I would like another MRI now to see if anything has changed on that front, but I have no great desire for another LP!

Since I was in hospital, I have been seeing an ophthalmologist every few months for a check-up. I am glad of this but it will be good to see a neurologist again. I’ll keep you posted!

Visual Snow for beginners!

Think back to the days of analogue TVs.  Particularly the little one you had in your bedroom as a kid (or as a student), which had no connection to the outside aerial. Fiddling with the mini indoor aerial you had perched on top of your TV, trying to get a decent picture but not able to fully get rid of the static. Well, that’s visual snow. But not on your TV screen, in your eyes, whether they are open or closed.

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(Picture taken from visualsnowawareness.weebly.com)

Well, in your vision to be precise, as most VS (visual snow) sufferers pass eye examinations with flying colours.

I have had VS since I was 17. As far as I remember, it appeared from nowhere. I don’t remember feeling particularly stressed beforehand, or suffering from a particularly bad headache or migraine.

An ophthalmologist gave my eyes a thorough examination, which I passed with no trouble. It was during this examination I discovered that when closing or covering one eye, the vision in the other eye was fading to black and back again repeatedly. Fixing my gaze on one spot for more than a couple of seconds would cause everything to fade to black, and moving my focus would then bring it back. I have since (almost beyond doubt) determined that this is caused by my brain trying to focus my vision on my closed/covered and open eye at the same time. I discovered this by covering one eye with a sheet of white paper instead of my hand, and in this scenario my vision fades to white rather than black.

The ophthalmologist put my symptoms down to stress or simple migraine or something, leaving me feeling like a foolish hypochondriac, and too scared to return or seek a second opinion, even when my symptoms did not improve.

Fortunately my symptoms didn’t get worse for many years either, so although I couldn’t forget about them, I stopped worrying about my eyesight. It was only two years ago in 2012 when I noticed a change. It was also at the time when I realised I’d had a bad tooth infection for many months (don’t ask). As you can see, you can end up a hypochondriac, analysing every symptom, medication, food and activity you encounter, due to a lack of explanation.  Anyway, I digress.

My new symptoms in 2012 started when I lost sensation in my right little finger. When it did not return after several days, I saw my GP. She said due to the location, it was probably a trapped nerve and to come back if it didn’t get better. It didn’t. Over the following days, the numbness spread up my arm and onto my back. It was just the skin though, and didn’t cause any loss of function. The most scary symptom then arrived, though. I developed several small blind spots (Scotoma) in each eye. Thankfully they didn’t seem to overlap so my vision was fine with both eyes open. At a similar time, I seemed to develop BFEP (see pic below). This is normal to some extent, but is often severe in VS sufferers. Fortunately I have now learnt not to focus on it much of the time.

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(Picture taken from here )

All of these symptoms except the VS, BFEP and Scotoma got better over the following months, but have made their appearances a couple of times since then, for one or two weeks at a time.

Without knowing the cause of VS, I can’t say whether or not these other symptoms are related to visual snow. I am lucky; some VS sufferers also have other debilitating symptoms that I have fortunately avoided so far. These include tinnitus, severe after images, depersonalisation/derealisation and loss of contrast or changes to visual colours, amongst others.

But it’s not all doom and gloom. Schankin C.J. et al. (2014)* have recently had their research into VS published. They took a sample of VS sufferers and surveyed them about their symptoms and whether they had a history of migraine. In a comparison with healthy participants, they found increased metabolism in certain areas of the brain (the right lingual gyrus and the left cerebellar anterior lobe adjacent to the left lingual gyrus) in VS sufferers.   

This research has made a significant dent in the world’s ignorance of VS, but this is just a start. Further research is needed both to back this study up, and to further our knowledge of this condition. Then, maybe, we can begin to dream of a cure in the future.

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*Schankin C.J. et al. (2014). The Relation between Migraine, Typical Migraine Aura and “Visual Snow”. Headache: The Journal of Head and Face Pain.
Volume 54, Issue 6, pages 957–966, June 2014.

Click here for the link to the research article.

Click HERE to visit the EyeOnVision Foundation website, where you can donate towards visual snow research.

Alternatively you can donate HERE on the fundraising page 🙂

Long distance relationships – Do they work?

As anyone in a committed long distance relationship will surely know, this type of relationship brings with it a whole range of emotions that ‘normal’ couples don’t need to deal with anywhere near as frequently. An ongoing roller coaster of happiness, excitement, mega-whirlwind-happiness, sadness and eventually back to happiness (usually coinciding with the booking of the next visit!)

VIDEO: Skype lovin’

However LDRs must surely have their benefits, right? Or else why do we do it? Is it simply filling a space in our lives until we fall in love with someone local? I guess this could be true for some couples, but in many cases they are much more than this, and you hope and plan for a future with your far away love.

YouTubers Kaelyn and Lucy spent approximately a year with only online and telephone contact before Lucy had the opportunity to visit her girlfriend. Now, a few years later, they are planning to move in together in the US.

However it is, of course, the moving in together that poses a big challenge for the LDR. It ultimately requires at least one person to move away from everything they know and love to set up home in a foreign land. Depending on the distance you are from your partner, it may be possible for the two of you to move to a location between your current homes, but both of you uprooting (if resources are pooled) can prove a lot more costly. Also, in my case, this would leave us somewhere in the Atlantic ocean!

If you are living in different countries, or even continents, you can face legal obstacles regarding your immigration to your partner’s country. This can not only be very expensive and time-consuming, but there is also a possibility of rejection if you don’t meet the criteria of the required Visa.

My girlfriend and I are currently in the process of filing a fiancé visa application for me to move in with her (in the US). It is a huge step for me, especially because I am an only child, so I worry about moving so far away from my parents as they reach retirement age. But we want to start our life together and I am very excited for that!

VIDEO: Visa puppets

An LDR requires a VERY loving relationship, with both of you very sensitive to each other’s feelings. It requires a lot of compromising and willingness to drastically change your life for this person. But don’t forget your family and friends. You want them to be happy for you, not feel abandoned. If you plan to move away, keep them informed of your plans and give them time to get used to the idea. Reassure them that you will keep in touch and visit them whenever you can. And make sure you keep these promises.

But don’t give up! It CAN work! Some definite advantages are listed below.

1. If you can cope with an LDR, and maintaining the relationship between visits, and you’re still head-over-heels in love, then congratulations! Your relationship is super strong and healthy!

2. You REALLY appreciate your time together

3. You can spend all of your time together doing fun stuff because the boring stuff can be done when you’re apart

4. A willingness to be in an LDR significantly increases your chances (assuming you’re as much of an Internet procrastinator as me) of finding your perfect partner. If we limit ourselves to local people, then inevitably we’re writing off a whole world of really amazing people!

Good luck and congrats on your LDR 🙂

VIDEO: Long distance love