Mal de debarquement Syndrome - Cathy Helowicz Interview

A great interview with Cathy Helowicz discussing her work with the Mal de debarquement Syndrome foundation and what it's like to live with the constant symptoms this condition causes. Well worth a listen for anyone living with chronic imbalance and dizziness.

Swimmyhead

An Overweight Moth

Hi guys

I went to my GP this week to get my eyes looked at for something other than dizziness. For the past 2 years I have strangely been waking up every 4-5 weeks with an extremely painful right eye. The pain is quite unbearable, like a needle poking and scratching my eyeball. I wake up with my eye blood red and streaming heavily. The pain, redness and streaming eases off after about 8 hours each time and the next day I am completely back to normal until the next episode, about 4-5 weeks later. I did visit my doctor back in 2012 when it first started but he put it down to conjunctivitis which it obviously was not. So I have just  put up with it hoping that it eventually would disappear.
This past Monday I yet again awoke with the same pain and decided enough is enough. So I went to see a doctor I had never seen before. She told me I would be seen by an opthalmologist soon to get further tests concerning any nystagmus I may have causing or contributing to my dizziness and that they will also look at my eye because of the pain I am experiencing. In the meantime she sent me to my local optician to get a few basic tests done.

So yesterday I visited my local optician (something I should have done myself years ago really ) and she told me that the reason my eye is hurting is because I have a recurrent corneal abrasion. A tear in my cornea that for some reason will not heal. It seems that I have no pain for 4-5 weeks at a time because the scar tissue is healing but then when I go to sleep my eyes get dry and pulls open the tear. I tell you guys the pain is something else. We have all had a feeling of grit in the eye but this feels like 20 needles. She asked if I remember any time I may have injured my eye and I actually do remember an event.

About 2 years ago I was outside in my back yard, it was dark outside and I decided I would complete some basic vestibular exercises such as walking back and forth,shaking my head left to right whilst looking at my fingertip (as you do). The reason I went outside was because I thought the dark environment might further strain my vestibular system and make it work even harder (ridiculous really). Anyway there I was walking back and forth,shaking my head side to side and WHAM, what I can only describe as an extremely overweight moth flew straight into my eye. I assume it was a moth like creature but for all I know it could have been a bat with echolocation dysfunction performing it's nightly head exercises. What I do know was that it was a very heavy and hard impact. You guys can imagine what a shock to the wonky vestibular system that was. I was more concerned about not falling over than what just hit my eye. So I rubbed my eye and went back into the house and forgot about it until this week.

On the plus side my eyes are in very good health and I do not require glasses (not bad for 35). I did discuss prism glasses and how they might be able to help with vertical heterophoria and nystagmus but was told I do not display any need for prisms whatsoever. She saw no signs of any eye muscle issues but said that the eye specialist will do more delicate testing for nystagmus. She did say that if any nystagmus is still present and is causing my dizziness, unfortunately there is no cure (Great).

I will keep you posted

Take care guys

Swimmyhead

Up And Down

Hi guys

I have done my fair share of negative thinking over these last 8 years(can you blame me). I have felt depressed,hopeless,sad, isolated and I'll be honest with you I still have such feelings, only now the loss of what my life once was, the reality of what my life is and the hopelessness I feel towards my future are a background thought most days. Still,there really isn't a week that goes by when the reality of my situation doesn't hit home. My worst moments of course are when my dizziness and vertigo symptoms are at there worst.

I am not ashamed of feeling such emotions over the years (well maybe a little since I am a man and men are tough..... GRUNT). I am sure it is a perfectly normal response to a sudden and negative life altering event. A vestibular dysfunction diagnoses is the start of an emotional roller coaster. First you deal with the physical shock to the body(symptoms) then you have to deal with mental shock that the hellish altered reality before you is now your life. Then you spend everyday dealing with the physical and mental shock combined and ultimately will start mourning the loss of a lifestyle you once knew and the person you once were. There will be moments of hope(good days,a firm diagnoses) which then turns to moments of hopelessness (bad days, yet another diagnoses).There will be positive proactive moments (vestibular rehab,getting the medical test done) that turn into feelings of defeat (Vestibular rehab does't work, tests don't find anything). There will be days were you stand strong and fight on and other days you simply surrender. One day you will receive words of encouragement the next thoughtless flippant remarks and so on and so on. Your emotions will most likely be all over the place especially if you are a new arrival to planet vertigo. If your anything like me then your feelings will be up,down,up,down,up,down,up,down................................. all the while having to try and put your best foot forward with your head held high appearing like a normal functioning human being.

One of the hardest aspects of living with a chronic and invisible condition like dizziness and vertigo is the ACT of ACTING like there is nothing wrong. I have been acting now for 8 years I might well deserve an Oscar.

Having to deal with all of this and much more has been very difficult and can still be difficult after all this time but it does get better. You will have less symptomatic days (even though it might not feel like it right now). You will have happy days and laugh. I think the best  thing to do when your symptoms are bad is simply surrender to it. Sit back and say "come on then, do your worst" and accept that on this day,this week or this month it just is. Take it easy and do what ever you have to do to get through such moments. I take advantage of the better days and go for a walk, work out and interact with others and it's the dizziness that is shouting "come on then,do your worst" to me

The situation you and me are in (presuming your reading this cause you are also dizzy) is a dilemma to say the least but I have hope. Even though that hope continues to turn into hopelessness from time to time I cling to it and it's hopefulness that is mostly in the front of my mind these days whilst the hopelessness and the negative emotions spend most of the time in the background.

Brick By Brick

Swimmyhead

Nystagmus

Hi guys

After reading about the eye condition vertical heterophoria and learning that it is a binocular vision disorder which can cause balance and vertigo problems I decided to look into other binocular vision disorders (There are many eye conditions that fall under this catergory) to see what else could cause vertigo and dizziness. To my suprise NYSTAGMUS is considered a binocular vision disorder. I have never really looked into the effects of having nystagmus and have always thought it was a side effect of vertigo. After all it was my vertigo attack many moons back that left me with mild nystagmus. No doctor or specialist has told me that I need the condition looking at or treated in anyway so I have never given the subject much thought.

As far as I know spontaneous nystagmus is quite typical in patients who have experienced a vestibular upset. In fact the most common cause of dizziness and vertigo is BBPV and patients who visit the doctors office complaining of sudden dizziness will usually be placed in the Epley manoeuvre and the doctor will then look at your eyes for any involuntary twitching and movement. Some patients will display nystagmus in this position while others may not. I did not display nystagmus whilst in the Epley position but nystagmus was evident when trying to follow the doctors finger from left to right. I had other tests such as the caloric test and other eye tests using goggles all confirming the presence of nystagmus. Usually nystagmus is temporary when it presents following a vertigo attack and goes away along with the dizziness.  However I have had at least four specialists tell me I have nystagmus but never given any advice on how to treat it or that it should be of any concern.

My nystagmus is still apparent today when looking hard left or hard right. My eyes still twitch back and forth and I can feel them do so.

What I have come to learn is that nystagmus itself can be the cause of dizziness,vertigo and balance problems. What if this is the reason I am not getting better. What if it is this eye condition that is creating the illusion of movement and not a wonky vestibular system? Perhaps my vestibular system healed long ago and it's the lingering nystagmus that's my problem.

Some symptoms caused by nystagmus are:

1. Difficulty reading ( lose place as you scan a page)
2. Oscillopsia - Bouncing of the world
3. Dizziness
4. Vertigo
5. Balance problems
6. Gaze stability issues
7. Trouble seeing in low light (the dark)
8. Blurred vision
9. Sense of disorientation
10. Difficulty tracking motion

Now one titbit of information I happened to stumble upon which further suggests this could be my problem is a certain medication they give to people with nystagmus to help calm the involuntary twitching of the eyes. The medication is Gabapentin.

Gabapentin just so happens to be one of the medications I have taken daily for the last three years for my vestibular migraine treatment. I have said before that since taking my medication these last 3 years there has been a decrease in the intensity of my symptoms some of the time. The last 3 medicated years have been better than the first horrendous medication free 5 years.

Maybe the gabapentin is not helping a suspected vestibular migraine diagnoses but by pure chance calming my nystagmus. Could this just be coincidence?

Anyway, whatever the reason for my constant vertigo I intend to cover all areas and so am being referred to an eye specialist to see if the nystagmus is causing my balance problems or at least contributing to my vestibular dysfunction. It's worth a shot ain't it.

Take care guys

Swimmyhead

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