Vision Issues

I have been steadier overall these last few days. It's a welcome break from the intense swaying and heaviness I normally feel. Every time these less intense days come around what I really notice is that my vision clears up and when my vision improves the swaying and pulling and motion I feel and witness becomes much less. The improvement of visual clarity further improves my perception (depth) of space around me, and allows me to feel much more connected to the world rather than observing it in what I can only describe as detached sense of reality.

Here are my visual problems that I have daily since my vestibular upset: Each are always present and each usually vary in intensity from day to day.

1.Visual static (Visual snow) - This is always present except on these rare better days. I don't know how to describe it other than it's as if I am looking out at the world through dense air. Static like fog. Carpets,bed covers,wall paper,netting seem to shimmer,flicker and dance. This was especially bad before starting my medication but is still present 24/7 except on my random better days.

2.Blurred vision - This comes and goes

3. Double vision - Again this comes and goes as it pleases.

4. Trouble focusing and Tracking (zooming in and out) - This used to be really bad. If I try and look directly at an object for example my finger in front of me. When I zoom in to look closely at the tip of my finger I will feel a push/ pull sensation and the the time it takes to zoom in is longer than it should be. What I mean is it's actually an effort (work) to simply focus in and look clearly at an object and hold my gaze. It's no longer immediate and natural. Zooming out from an object can create the same unsteadiness and effort. Tracking moving objects is difficult as they appear to blur and make me lose balance.

5. Night blindness - I think I have said it before but since my vestibular problem began a dark environment seems much heavier and darker.When my visual static is bad then my balance is bad and a dark room can be an extremely disorientating experience. Visual static appears to bounce,fuzz and dance noticeably in the dark making the air very thick and dense looking.

6. Unable to fix my gaze - I find it hard to keep my gaze still when looking directly at an object. For example if I were to fix my gaze upon a light switch on the wall then my vision appears to drift out and back again. I can also feel the jerking of my eyes but I don't think it's noticeable. Simply looking at a person or focusing on an object feels like constant work for my eyes now.This was very bad before the medication I was given.

7. Nystagmus - Involuntary twitching of the eyes brought on as a result of my acute vertigo attack way back when. Nystagmus tends to be temporary when brought on by an inner ear//vestibular problem but mine has never left and I don't know why. If I look at my doctors finger and he moves it hard right or hard left my eyes will follow his finger but then suddenly jerk back or bounce over and over. It's not noticeable unless I look hard left or hard right.

As you can see not only am I dizzy but have all these visual problems along side the dizziness daily. I am sure you fellow sufferers can relate to this. I wish dizziness was the only symptom we had to contend with.

However today I am steadier and as always my vision issues are much less so there is obviously a connection between the two.

I hope you all keep positive and keep battling on towards steadier days.

Swimmyhead

The Dirty Dozen

I have been fairly strict regarding the migraine diet these last couple of years. Sure there are times when I falter but my meals have been so boring since stopping many of the foods I enjoy that there are moments of weakness and I eat an ice cream or chocolate bar. To this day I still do not know what my food triggers are and still I am not convinced of the effectiveness of the migraine diet. I feel rotten eating those foods and I still feel rotten not eating those foods.I have found it very difficult to eliminate all possible triggers on a daily basis and still get an enjoyable nutritious meal. It's a difficult task. Below is a simplified list of common migraine trigger foods I found at http://www.pcrm.org/health/health-topics/a-natural-approach-to-migraines

Here are the common food triggers, also known as the "Dirty Dozen,"

• dairy products*
• chocolate
• eggs
• citrus fruits
• meat**
• wheat (bread, pasta, etc.)
• nuts and peanuts
• tomatoes
• onions
• corn
• apples
• bananas

I still eat way too many tomatoes, meat and bread so maybe they are my problem foods. Two things I do avoid completely is Caffeine and  Monosodium Glutamate. There are more detailed lists on the web but I honestly believe they are impossible to stick to. You are essentially left with nothing but some greens and some fruits to eat. I do wonder if my diagnoses of vestibular migraine is correct since I am coming up to 8 years dizzy this month and the diet plan has not been that effective for me. Then again maybe it has helped a little since i have had weeks here and there less disorientated. I really don't know.

Swimmyhead

Dizziness and Vertigo symptoms

I shared this when I first started this blog and think it's worth sharing again. A list of symptoms published by the Vestibular Disorders Association (VEDA) and it describes my experience perfectly. These symptoms can be overwhelming at times and are always present. I have taken this list with me to many hospital consultations.

Vertigo and dizziness 
▪ True spinning vertigo attacks, Constant visual vertigo or whirling sensation; an illusion of movement of self and the world
▪ Lightheaded, floating, or rocking sensation 
▪ Sensation of being heavily weighted or pulled in one direction.Detached, spaced out feeling all of the time.

Balance Problems and spatial orientation issues
▪ Imbalance, stumbling, difficulty walking straight or turning a corner. 
▪ Clumsiness or difficulty with coordination 
▪ Tendency to look downward to confirm the location of the 
  ground 
▪ Tendency to touch or hold onto something when standing, Activity increases Imbalance
▪ Sensitivity to changes in walking surfaces or footwear 

Vision 
▪ Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled. Eyes feel stiff and slow
▪ Discomfort from busy visual environments such as traffic, crowds, stores, and patterns. Walls and floors appear to arc and bend
▪ Sensitivity to light, glare, and moving or flickering lights
▪ Tendency to focus on nearby objects; increased discomfort when focusing at a distance
▪ Increased night blindness; difficulty walking in the dark
▪ Poor depth perception, Bouncing vision whilst walking, Fuzzy, static like vision

Hearing 
▪ Fluctuating hearing 
▪ Tinnitus (ringing ears, roaring)
▪ Hyperacusis, Sudden loud sounds may increase symptoms of vertigo, dizziness, or imbalance 

Cognitive and psychological
▪ Difficulty concentrating and paying attention
▪ Forgetfulness and short-term memory lapses 
▪ Confusion, disorientation, difficulty comprehending directions or instructions 
▪ Difficulty following speakers in conversations especially when there is background 
noise or movement 
▪ Mental and/or physical fatigue out of proportion to activity
▪ Loss of self-reliance, self-confidence, self-esteem 
▪ Anxiety, panic 
▪ Depression 

Other
▪ Nausea or vomiting 
▪ "Hangover" or "seasick" feeling in the head 
▪ Motion sickness 
▪ Ear pain 
▪ Sensation of fullness in the ears 
▪ Headache with dizziness
▪ Sensitivity to pressure or temperature changes and wind currents

Swimmyhead

A girl with an Invisible Disorder

I just finished reading a blog post by VEDA ambassador Sammy Lynn who one year ago started experiencing a strange sense of motion. After seeing doctor after doctor she was finally diagnosed with Mal de Debarquement Syndrome (MdDS). I had to share this because it was as if I was reading my very own experience. I am sure many of you will relate. It's well worth the read.

Sammy Lynn blog: http://www.lovenutritionco.com/finding-balance-a-girl-with-an-invisible-disorder/

I initially saw this post on the Vestibular Disorders Association (VEDA) facebook Profile:VEDA Facebook Profile

Swimmyhead

Dizzy Me goes English - Crowdfunding movie

Undizzy You - With Dizzy Me

Dizzy Me is a complete guide to dizziness and vertigo and is written by an ex patient and vestibular expert. They are looking to have the book printed in English and are looking for help in doing so.

Here is a link to a video and more information about the book Dizzy Me - http://www.ulule.com/dizzy-me/

Dizzy me - Twitter Profile - @stadsbader

Dizzy Me Community - Facebook Profile

A book raising awareness about vestibular disorders can only be a good thing. Check it out guys

Swimmyhead

Update

Hi guys

Thought I would check in as it's been a few weeks since I last posted. As usual I have felt pretty rough the majority of that time. Some days have been very intense symptom wise and headaches have been much more frequent especially in the evenings. However today has been a beautiful sunny day and my symptoms are milder. I have said it before but the more sunny and bright the day is the better my vision and balance. I have no idea why this is but it happens to be the case. Of course there are hundreds of sunny days in the past that have felt like hell but usually I feel more steady in a bright sunny environment. It also lifts the mood doesn't it.

Swimmyhead