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Vision loss, visual snow, headaches amongst all family members

Hello there. I am extremely desperate for any help or suggestions.

I am a 32 year old white Caucasian female. I am type 1 diabetic (since age 3) and I suffer from the following comorbidities: chronic migraine, chronic cluster headaches, visual snow, anxiety, idiopathic diastolic hypertension, tinnitus and chronic sinus congestion.

I also have the following symptoms:

Progressive scattered scotoma in both eyes but in different locations.
Constant shimmering peripheral vision.
Shimmering pixelates vision (visual snow).
Fatigue
Tingling in fingers
Heart palpitations

My concern began for myself but has now grown due to both my children mentioning similar symptoms.

In 2016 I developed a blind spot close to fixation in the right eye. Multiple ophthalmologists scanned and dilated my eyes, performed OCT, OCTA, angiography and visual fields. Nothing was found. The spot did not disappear and remains to this day. The spot shimmers slightly and blanks out any vision in that area. It is completely blind except for the subtle shimmer.

Over the course of the next few years I began developing more and more of these blind spots throughout the vision in both eyes. They remain permanently fixed in my vision once they appear and I now have over 30 between each eye.
These spots are fixated, do not move or change shape or size and are completely blind/blank/shimmer slightly.

As I say, I have been tested every three months by an ophthalmologist who is sure it is not my eyes and so referred me to a neurologist. MRI, Lumbar puncture all came back clear. An EEG has NOT yet been carried out so I am awaiting that.

My major concern was that I continue to lose parts of my vision for an unknown reason; this obviously terrifies me. I have tried to accept it though and move on. But my symptoms just keep on getting worse.

I also have temporary blind spots which appear in ONE eye at a time and that resolve completely after a few minutes to days. These do not scare me. It is the permanent ones that do.

As well as the blind spots, around the same time they appeared I also began with all of my other symptoms listed above: visual snow, shimmering peripheral vision, tinnitus, cluster headaches and chronic migraine etc.

I am at a loss as to what to try next. But more recently I am concerned on a greater scale since my two young sons have both mentioned seeing spots in front of their eyes and ringing in their ears. My youngest (6 years old) has been diagnosed with photosensitive epilepsy last year. He mentioned seeing spots that “hide things” in his vision and sees lines. He also says he sees tiny little sparkles all over his vision (visual snow perhaps?!). My eldest (14) has also complained of seeing spots in one eye at a time which blanks things out and has terrible tinnitus. He has an ENT referral soon.

Am I missing something?!?! Could it be our house?! All of our symptoms only ever began since we moved into our new house. None of us were ever ill prior to this. I appreciate this could be a coincidence but I am just thinking of everything.

We did have a small gas leak which was fixed last year. We do have birds living in our attic (can’t have somebody remove them until winter) but other than that it seems fine. No obvious mould etc.


Please somebody help me. I am so scared for both myself and my children. I plan to move house just to eliminate the possibility but I have exhausted all obvious avenues with the ophthalmologist and neurologists. Where should I go next?!

To reiterate - I am losing vision and in chronic pain with daily headaches. I do not want my children to be starting with the same thing.

Many thanks.
1 Responses
177275 tn?1511758844
I have read most of your many posts. You apparently live in UK and are under the care of Mooresfield Eye Hospital. That is among the best in the world and the best in England. If they can't find the cause with all the testing, no way I can give a helpful answer.  
2 Comments
You may be right but I’d appreciate your help all the same. I agree that I am under the very capable hands of some amazing doctors but I wondered if there was another route I could perhaps take once I’ve exhausted the ophthalmologist/Neuro route. Is there anything else you could suggest I look into? I appreciate your insight and time.  
I'm sorry. One thing a good physician does is learn to say "I don't know" and refer. I don't have a clue what might be causing your problem.
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177275 tn?1511758844
Kansas City, MO
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