8 years

It's been 8 years, 8 bloody years this past Monday that I woke up in this vertigo ridden altered state. You would think I would except my fate by now and would have learned to live with this condition but I have not and never will. It's not a condition you can learn to live with. It changes and morphs hour to hour there is no constant or steady baseline you can get used to with this illness. The years seem to be flying by yet at the same time they have been the longest and most difficult I have experienced. This 35 year old is very different to the healthy 27 year old back then. If someone had told me back then what my fate was I would have run a thousand miles away. I wouldn't have believed that I could endure so much mental and physical hardship. So much has changed and so much has been lost during these past 8 years. I have lost my independence, lost a several year relationship,lost confidence and of course any sense of well being. I've been standing still whilst the world and people around me move on. Friends and family doing their thing whilst I am on the sidelines.

Of course having unrelenting vertigo and dizziness is a physical challenge but it's been extremely tough mentally. For example, it took 2 years for me to be offered an MRI so because of this I spent the first two years with constant worry wondering in the back of my mind if I had a brain tumor or something else sinister. Thinking like that and dealing with the physical problems daily was no easy task.  Trying to explain my condition over and over again to friends, family,many different doctors and acquaintances has been exhausting. Waking up everyday and having to live life and "get on" in a world that looks and feels completely wrong has been a true test of will power that only I and other sufferers can truly appreciate. 

Over the years I have shouted and said things I wish I had not, I have had moments when I have lost my temper due to the unrelenting symptoms. All through frustration and because there are times when I have felt completely alone. It's been a test to bite my lip upon hearing the many thoughtless, off the cuff remarks about my condition from others. I have felt a burden, a failure  and ridiculous. Trust me to come down with a rare and unbelievable condition. Couldn't I have just broken my leg or got measles instead. Why me? I've wondered over and over again. It was physically and mentally challenging completing vestibular rehabilitation numerous times to no avail. It's been tough to except that all the daily working out I do (still do) to retrain my brain has so far not cured me. It's been hard sticking to a boring diet in the hope of significant improvement in balance and well being but getting nothing back. 

All in all it's been a very difficult journey with some very low moments but sitting here today 8 years on I am in some small way very proud of myself for having endured the numerous symptoms minute after minute,hour after hour. I am proud of myself for getting up everyday and battling on especially on those severe days when I am so dizzy I can hardly move my head never mind holding a conversation or walking down the street. I am proud of myself for committing to moving and working out everyday to better myself even though I am still waiting for a result. I am proud of the inner strength I have displayed throughout this time. I am proud of going through all the doctors and hospital visits, scary tests and physical exams. I am proud that I have endured all these things and more and can still laugh. 

No one in my circle has experienced my condition. They may have felt the effects but none truly knows what I go through daily.Only I know what this condition has taken from me, Only I have experienced the unrelenting symptoms and disorientation. Only I truly understand the strength and will power I have had to muster just to get through each day with this invisible illness. I am not that healthy care free 27 year old I once was but I am a stronger, more patient and appreciative 35 year old. I might not look like it on the outside, to others it may appear that I don't do much but I  know everyday I try my best and do what I can do. I am a fighter and in some small way I am proud of me.

I'm gonna get there and so will you. Keep fighting

Swimmyhead

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