Hi guys
Three weeks from now I will see an ophthalmologist because of my corneal abrasion and more importantly my long term dizziness, I am hoping they find a reason as to why my eyes don't feel like they are working together (in sync). Of course I don't really want anything wrong with me but in some ways it would be nice to hear a reason for my problems in tracking motion,visual motion and holding gaze etc. I know the eyes are an important part of a healthy functioning vestibular system and that by having a vestibular problem the eyes will be effected but what if it is my eyes that are the sole reason for my ongoing balance issue and causing my vertigo or at least significantly contributing to it. I don;t know I guess I'm hoping they will find something wrong, give it a name and tell me they can fix it or at least significantly help my visual vertigo. It sounds a little optimistic I know.
I'll be sure to bring up nystagmus and vertical heterophoria and ask about other possible binocular vision disorders that might cause my symptoms. I want a thorough exam to test eye function. I just hope they take my numerous crazy symptoms seriously.
Swimmyhead
Wednesday, 9 September 2015
Saturday, 5 September 2015
A difficult 10 days
Hi guys
The last 10 days or so have been difficult. I have been experiencing a horrible level of dizziness yet again. It's full on from the moment I wake up until I eventually nod off at night. I have an inkling of what may have increased my dizziness and vertigo back to this all consuming level it is called WHEY PROTIEN. Now I cannot say with absolute certainty that this is the culprit as my vertigo tends to reach disorientating levels every so often but if migraine is the cause of my vertigo then I really should not have been drinking Whey protein shakes.
Whey protein,whey protein isolate,whey protein concentrate etc should not really be part of a migraine elimination diet but since I work out I thought I could try it and see how it goes. Well all was good for a week or so and BOOM the internal swaying and visual swaying and the slow tracking vision came back full force and I have been in a different world for the past 10 days or so. I am back to those horrible sudden sensations of falling or dropping when all I am doing is sitting still. Back is the bouncy castle floor and the full buzzing head pressure that stops me from turning or moving my head with any kind of speed. I did stop drinking the whey protein a week ago but the calmer intensity of my symptoms eludes me.
Here is a website that is useful for people trying to stick to a migraine diet and avoiding MSG.There is a huge list of ingredients and names that manufacturers use that have or may have MSG (monosodium Glutamate).
http://lifespa.com/sneaky-names-for-msg-check-your-labels/
Swimmyhead
The last 10 days or so have been difficult. I have been experiencing a horrible level of dizziness yet again. It's full on from the moment I wake up until I eventually nod off at night. I have an inkling of what may have increased my dizziness and vertigo back to this all consuming level it is called WHEY PROTIEN. Now I cannot say with absolute certainty that this is the culprit as my vertigo tends to reach disorientating levels every so often but if migraine is the cause of my vertigo then I really should not have been drinking Whey protein shakes.
Whey protein,whey protein isolate,whey protein concentrate etc should not really be part of a migraine elimination diet but since I work out I thought I could try it and see how it goes. Well all was good for a week or so and BOOM the internal swaying and visual swaying and the slow tracking vision came back full force and I have been in a different world for the past 10 days or so. I am back to those horrible sudden sensations of falling or dropping when all I am doing is sitting still. Back is the bouncy castle floor and the full buzzing head pressure that stops me from turning or moving my head with any kind of speed. I did stop drinking the whey protein a week ago but the calmer intensity of my symptoms eludes me.
Here is a website that is useful for people trying to stick to a migraine diet and avoiding MSG.There is a huge list of ingredients and names that manufacturers use that have or may have MSG (monosodium Glutamate).
http://lifespa.com/sneaky-names-for-msg-check-your-labels/
Swimmyhead
Tuesday, 18 August 2015
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
Swimmyhead
Thursday, 23 July 2015
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
Saturday, 18 July 2015
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
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
Monday, 22 June 2015
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
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
Thursday, 28 May 2015
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.
I'm gonna get there and so will you. Keep fighting
Swimmyhead
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
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