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It is comforting to know I'm not alone!

Discussion in 'Introductions' started by J.M., Mar 18, 2016.

  1. J.M.

    J.M. New Member

    Hi! I've had visual snow for 10 months. I was hoping it would just go away, but sad to find out that may not be the case. I've had a CT scan and MRI, plus all the tests by optometrist and ophthalmologist. Everything good there. So now what? My doctor wanted me to go on Amitriptyline but I refuse to take it. I was hoping to get a referral to a neurologist but after doing my research on the Internet, it doesn't sound like that will help.

    What bothers me most is the aura feeling I have that comes and goes. The next thing that is upsetting my vision are blue flashing or pulsating ovals that are there whenever I look outside or am outside. My visual snow is really only noticeable when I'm outside. It is a very light grey but is noticeable as soon as I step outside. It is secondary ( on some days it is really evident, though) to the blue pulsating ovals.
    I am super sensitive to light ( sunlight, fluorescent lights, or computer/cellphone brightness). That is awful to deal with, too.
    I have a tremor in my neck/ head. I really notice it when I lie down to sleep at night. I feel like all this tremor/ pulsating is connected. The pulsating ovals and my tremor feeling.
    I've had a lot of neck troubles. Whiplash... Could that be a cause?
    I also have tinnitus since I started getting all of this. I did have a migraine with aura that came at the onset of these vision disturbances.
    So, I do not know where to go next for medical help. It is comforting to know I am not in this alone.
     
  2. Ivan Kons

    Ivan Kons New Member

    This is a quote from from Dr. Weatherall, a leading UK specialist on Visual Snow

    "I don't just want to give information about visual snow research however, I would also like to offer some advice about managing the symptoms. From clinical trials, we know that neurone metabolism can significantly benefit from three natural substances. Riboflavin (vitamin B2), magnesium and Co-enzyme Q 10. In patients with migraine, taking these supplements managed to alleviate not only the frequency of migraine, but the amplitude as well (i.e. the severity of the attack). Dr. Weatherall's patients had a range of results. Not all of these patients had migraine though, so benefit can be achieved in non-migraneous visual snow sufferers also. So here is the formula.

    Riboflavin 400mg/day

    Magnesium citrate or taurate 600mg/day

    Co Q 10 350-450mg/day

    Notes: starts with just one of riboflavin OR magnesium. The Mg has to come in citrate or taurate form. These two can cause abdominal cramping so experiment to see which you tolerate best. Co Q 10 is very well tolerated so can be taken usually without side effects, however introduce these supplements one at a time so that you can notice a cause-effect relationship.

    Do this for 4-6 weeks. If there is no difference in your visual snow then it is unlikely that doing this for longer will show any improvement."
     
  3. J.M.

    J.M. New Member

    Thank you so much for this. I appreciate getting this information and I believe others would, too!
     
  4. Ivan Kons

    Ivan Kons New Member

    I just wanted to say that there are many people who either got rid of their visual snow or significantly managet to mitigate symptoms, but as soon as they do that they decide to move on with their life and forget about VS as soon as possible, which is of course fine, but it would be so much better if they could come and share their stories how they got better. That is why the Internet is full of negativity. You see the stories only of people who have huge problems and you never actually see anything positive, because people with positive outcomes just dont find incentives to write.
     
    Meg likes this.
  5. J.M.

    J.M. New Member

    I am not one to spend much time on the computer researching but I was at a point where I wasn't getting many answers through my own medical journey. I am thankful for sites like these. I found a couple of others based in California. ( I am Canadian. That is one aspect of the Internet I find interesting, that it links up people around the world! )

    Thank you for your viewpoint on those who find a way to manage their symptoms. If I find relief, I promise you I would be most happy to post my positive results! I know this affects a person's life dramatically. I, too, would like to help others in this journey. Thank you for your help!
     
  6. J.M.

    J.M. New Member

    I realized today I do see visual snow inside the house. I don't know if it has changed but the persistent migraine aura prevented me from noticing other visual issues. ( I'm still figuring out all these different symptoms. I'm also dealing with a vitreous detachment and grey spots in the vision of my right eye since Jan. Cataract developing also. ) I thought it was only when I looked outside or was outdoors.

    The visual snow bothers me but these blueish pulsating ovals are more bothersome. I have noticed once in awhile the visual snow gets very dark and then I don't have the ovals for that brief time until I get sunglasses on.
    I have blue flashing ovals that occur ever time I look into the sunlight streaming in through a window or when I go outside. They are most obvious. Then the visual snow is behind that. Plus the sensitivity to light that adds to the mix. So sunglasses have become a necessity, even when I'm shopping in stores.

    Tinnitus is a constant.

    I do have to say I'm accepting this more now and not in fear of losing my eyesight.
    My father had macular degeneration, so that was in the back of my mind since this all started in May 2015 when I had a migraine with aura ( without pain), the first one I've ever had ( at 56 years old!). From that day on, I've experienced all that I've mentioned.

    I must say how therapeutic it is for me to write this out. I'm sure the medical personnel I've seen think I'm making this up or I am too stressed! What is stressful is not knowing what this is. I am learning more every day. Thank you to all of you!
     
    Meg likes this.
  7. Ivan Kons

    Ivan Kons New Member

    I just wanted to add that it turned out I don't actually have visual snow. Or at least VS in the classical meaning of the symptom. I see some white dots almost as if I am looking at the sky in a dark night and seeing all these white stars bu the thing is, because these stars are white, they are noticable when they are contrasted with a darker background. I also dont notice them when I am outside during the day. As far as I am concerned, VS is VS when it is noticable in all lighting settings.

    As for the ears, the noise well is noticable only when I absolutely look for it and even then it is difficult to hear it. It appears sometimes before bed but doesnt prevent me from sleeping in any way. Sometimes it appears after heavy exercise for a while.
     

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