Christmas shenanigans

Hi Guys

Hope you have had a lovely Christmas. I have actually been quite brave this December making myself leave the house and have an evening out with friends TWICE. It was nice to be out mingling with the world as it's been some time. The first night out a couple of weeks back was a success as it happened to fall on a less dizzy day but my second evening out with friends on Christmas eve proved to be more demanding on the wonky vestibular system but I did it and enjoyed it. It was cool bumping into older friends I have not seen in years, they thought I had dropped off the face of the earth. However the evenings shenanigans must have took a tole because Christmas day was the dizziest day I have had in some time.

Its strange because on one hand I was really happy to be out feeling like a normal human being but at the same time I felt sadness over what I have missed out on over these years. All the good times and memories I could have had with friends and family were not meant to be. Anyway I have told myself that 2016 is the year I do more of this kind of thing when I feel up to it. I won't hide away any longer.

So there you have it. I have been to a christening and had two nights out all in the space of a month. It has to be the most adventurous month I have had in 8.5 years. Not once was I vertigo free but I managed. It has taught me not to get so nervous about gathering or events in the future. When my symptoms are all consuming then I obviously cannot attend such events which really P***** me off because at my age I should be in control of my life and be able to go out when I want and do as I please but sadly there is little control in life when you have a chronic vestibular disorder.That being said I do have days when my symptoms are less intense and I must take advantage of these moments in the future.Getting out and mingling and being part of the human race every once in a while can only be a good thing

Happy Christmas guys

keep pushing on

Swimmyhead

Calmer seas,Christening and Chinese food

Hi Guys

Thought I would check in and let you know whats going on with me at the moment. If you have already read my previous post you will know that I was prescribed betahistine to see if it calms my symptoms. Well, that was a month ago and I have yet to take them. The reason being is that I have had a pretty good month balance/dizziness wise and don't want to rock the boat. Sure I have a level of dizziness and a light head throughout the days but I am able to function pretty well. I have no idea why the steadier balance and clearer head but it's nice to have these moments. I have no way of knowing how long the calmer seas will last but when it ends ( I am sure it will) I will then turn to the betahistine. If I took it now and it helped I might not feel the benefits(if any) because I feel ok. I think it best to take them when I am back to that disorientating hell and I will get a clearer picture if they work for me or not. My plan is to still come of my current medication after the trial with betahistine and try that other medicine I talked about previously. The medicine that helped that young man go from a vertigo ridden state to having his life back. So things are taking a little longer than planned but like I said I don't want to rock the boat with new medications whilst am having a better time of things.

On another note my friends had their children christened this past weekend and I was honoured to be a Godparent. Of course I was stressing a little weeks before the day because I have no control over the intensity of my symptoms. I didn't know if I would wake up really dizzy and disorientated or with more manageable symptoms. Luckily it was the latter and I had a nice day. I also had Chinese food for the first time in about 10 years which if you are on a migraine diet is a BIG no no (MSG). I can happily say it did not effect me negatively at all. It was delicious.

So there ya have it. Ill keep you guys posted.

Swimmyhead

There is hope

Hi Guys

This week a friend of mine who is a nurse called me and told me she had been talking to a neurologist she is currently working with about my balance problem. To her surprise he told her a story about a young guy who he treated in the past who had suffered the same dizzy fate. This guy was convinced after 5 years he would never get better because everything he tried simply did not work (sounds very familiar). He could not work and didn't meet friends. He simply was housebound. Anyway to cut a long story short they tried him on a medication that can actually be purchased over the counter and unbelievably within 2 weeks he was symptom free. After 5 years of hell and no hope he is now working and loving life.

He told my nurse friend the name of the medication and of course she told me. Now it's not my place to be talking about different medications since I am not a doctor and I do not want anyone reading this to run off and buy the medication and harm themselves. So I am not going to name the medication just yet ( I will once I try it, I promise you guys).

So to be on the safe side I went and saw my doctor and asked about this particular medication and she was happy to give it a shot ( I was so excited). However the excitement was short lived as it seems this particular medication may cause severe side effects when combined with my current meds. However there is still good news in that my doctor is willing to prescribe me this but I must ween myself off of the meds I am currently taking(Woo Hoo).

I also asked if there were any meds that I might try that act as a vestibular suppressant something that could help mask or decrease the sensation of vertigo. Since I have never ever been given any medication to help the severe sensations I live with. So in the meantime I have been prescribed betahistine. Which many of you guys have probably tried especially meneire's patients.I have never tried this before but have obviously heard of it. I am hoping it will help mask my symptoms that truly would be something.

At this point in my journey (8.5 years) I am willing to try anything even if it only masks the cruel sensations. So there you go, I'm going to try betahistine for a month or so  then ween myself off of my current meds and try the medication that gave that young man his life back.

There is hope

Swimmyhead

Opthalmologist Update

Hi guys

I have been to see an opthalmologist this week and it seems I have a few issues regarding my eye functioning. It was no surprise really since I have always felt that my eye movements have been wrong ever since that life changing morning I woke up to spinning vertigo. My eye sight and eye health are great which is always nice to know but there are slight abnormalities in  the way my eyes work together and move.

I should say that my eyes have always been in good health with no abnormalities present until I was hit with Vertigo back in 2007.

Below is the basics of what I was told by my opthalmologist this week:

1. I definitely have slight nystagmus when looking hard left and hard right. This is no surprise to me since I have been told this many time before. This started after the very first attack of vertigo back in 2007 and is still present to this day. It is not at all noticeable when looking at me.

2.My eyes now apparently want to wander outwards away from each other. This is a fairly common issue for people. It is not noticeable when looking at me.

3.The way my eyes zoom in and out is now slightly abnormal. This has been obvious to me all these years. When I use to do vestibular rehab and had to follow my finger in and out my vision was and is very slow to zoom from a close object to a distant object. It just does not feel quick and easy anymore.

4.This one concerns me a little. I know have a slight abnormality in the way my eyes move up and down.

5.This has nothing to do with the dizziness but I also have a recurrent corneal erosion (they should just call it agony) and have been advised to use Lacri lube in my eye before bed every night indefinitely.

So there you have it 4 different issues effecting my eye functioning at all times. Simply put my eyes cannot keep a steady gaze to far right or far left. They want to drift apart. They are not efficient at zooming in and out and the up and down movement of my eyes have some sort of issue going on. Basically my eyes don't work efficiently in any direction it seems. Fabulous.

No bloody wonder I cannot track movement without feeling like I'm falling and the world bounces and sways. No wonder I get headaches and strained eyes. No wonder I always feel like I am having to work at looking out at the world rather than it feeling easy and natural. No wonder I can't maintain a steady gaze.

I was not told if my eyes are causing the vertigo nor was I told that my suspected vestibular migraine was causing the weird eye issues. It seems to me that the vestibular attack I had all them years ago has done something to my eye functioning.I have always felt this. Might I still have a vestibular problem that is the root cause of my eye problems? or might it be that my eyes are now the root cause for my vertigo? I still don't know unfortunately but I do know they have certainly got to be playing a major role in this madness.

I had a thorough eye examination and there was a lot of writing and notes which are now passed on to another consultant but I was not told much except for the above. I do remember being told that unsteadiness in the dark tends to be inner ear related (I am very unsteady in the dark). I wish I had asked more questions or listened harder looking back but don't we all.

Anyway I have another appointment with them in 2 months to firstly get a small eye cyst removed and then to look further into my eye functioning issues and the dizziness.

So guys if you are dealing with vertigo and chronic dizziness I suggest you go see an eye specialist (not optician). An opthalmologist. I wish I had done this years ago because my eyes have felt wrong all these years.You would think that out of all the doctors and consultants I have seen one would have advised me to get my eyes examined by a specialist considering how vital a role the eyes are to the vestibular system and the fact that consultants in the past have diagnosed me with slight nystagmus (a binocular vision diorder).

One more thing. I have been using gabapentin these last 3 years for my suspected migraine associated vertigo. I mentioned in an earlier post that I had read somewhere that Gabapentin is used to help calm nystagmus. The opthalmologist confirmed this so it makes me wonder even more that the reason I have been having more tolerable moment these past few years is because the medication is treating my nystagmus and maybe not suspected migraine. I don't know I am lost. I really am.

My eyes and ears are the bane of my life.

I 'll be back

Swimmyhead

Ophthalmologist Appointment Soon

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

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

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

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

Do I feel sick all of the time?

The other day a family member asked me if I feel sick all of the time because of my dizziness. They are not the first to ask me this. I replied that I am very fortunate that I do not feel sick all of the time. His response? A bemused, confused facial expression. I was sorry to disappoint. I don't blame him since how on earth would he know what a chronic vestibular disorder feels like,for me anyway.

In fact feeling sick has never been a huge issue during my dizzy years. Now don't get me wrong there are moments here and there when I will suddenly become extremely nauseous. I could be combing my hair and EEK! I have to stop and sit down and breathe or I could be talking to somebody, concentrating hard and without warning EEEEK! the sick alarm rings and off I scurry to find somewhere airy and cold.

During my early dizzy years I would feel sick half hour here and half hour there a couple of times a week but never had to actually be sick. I just accepted it and never made it a big deal. There are three things however that I tend to avoid since being dizzy and they are big TV screens, video games and cinema screens. These three things are pretty certain to accentuate every dizzy symptom I have making me a watery mouthed nauseous wreck. Even scrolling on my smartphone can make me queasy. The motion on screens can leave me feeling wretched for hours after. The nausea is sudden and strong. I write about this lovely subject because only the day after I was asked if I feel sick because of the dizziness I played a game on the xbox for 5 minutes and felt revolting. I realised that I do feel sick more often than I thought.

I think people assume that because I am dizzy then I should be vomiting every single second of the day because thats what they would expect me to do or expect themselves to do.The fact is I do not feel like I am going to vomit all of the time and I am happy about that. There are moments I turn bright green or more accurately ghost white but one would expect to living with a vestibular disorder.

Swimmyhead

So called prime of life

Hi Guys

Just got back from my 6 month dentist check up. Everything was good but lying back in that chair was dizzying to say the least. All I see is a dentists face peering over me whilst the ceiling is on a never ending spinny loop. As I mentioned in a previous post my symptoms have intensified recently so I am back to my overwhelming dizzy ridden self.

As I was walking through town on my way back home I got more and more disorientated as people walked by me and as traffic zoomed past in my peripheral vision. Every uneven path I walked upon sent dropping or lifting sensations to my brain. Fifteen minutes later I reached my front door and felt completely out of it and needed a second to compose myself in order to put the key in the door. If only people knew how tough this disorder is.

It disheartening that after nearly 8 years I am still having to feel like this from a simple 15 minute walk. I'm supposed to be in my prime. I guess I am going to skip the so called prime of life. Still I have felt worse I guess but jeez how can something be so relentless.

I still have hope though since I begin appropriate migraine treatment this year. I am just waiting for the date.

I just realised this is my 100th post. That is a lot of rambling indeed.

Swimmyhead

A wonderful and insightful blog by Tamar Schwartz

Here is a link to a wonderful and insightful blog created by Tamar Schwartz who was diagnosed with Migraine associated vertigo. Visible person invisible problem.blogspot.co.uk

Swimmyhead

It's Back

After my previous optimistic post about feeling pretty decent these past 2 months the vertigo has decided to increase once again. The past three days have been more difficult than recent weeks. I woke up on Wednesday with a pressured/heavy head and fuzzyish vision back to being slow and motion sensitive. The floor is once again lifting me up and down with every step I take and the surrounding environment is swaying in and out of focus, oh the joy.

Once this heavy head sensation increases all my balance and visual symptoms worsen. This pressure has been absolutely constant throughout my journey until recently. Headaches and head fullness have been much better lately hence the improved past 2 months but it's back and so here I am feeling rotten. There is  just no consistency with this thing. There is nothing to do except endure it and wait for the milder moments.

Swimmyhead

The darkness

I was not planning to blog today only a certain experience I just had has urged me to do so. During the entire 7.5 years of living with vertigo standing or walking in darkeness (dark room,dim room ) have been exceptionally demanding and taxing on my vestibular system. I mean the visual movement/swaying and the sense of being pushed and pulled really intensifies as soon as I am standing or walking in the dark. My sense of space becomes confused and steadiness becomes a major problem. It has been this way for all this time. Every night I turn the light off before bed and then take a short few steps to the bed immediately becoming extremely unbalanced and disorientated. It's the same heightened vertigo sensation that happens even in a slightly lit room or outside on a dark evening walk. Darkness dramatically increases my symptoms.

I remember many years ago during my vestibular rehabilitation period I would tax my self further by turning all the lights of in a room (nearly pitch black) and focus only on the bright red light glowing from my tv set standby light. I would do this in darkness most nights in hope that my brain and senses would somehow recalibrate. With intent I would stare at this small light trying to maintain my twitching jerking gaze upon it all the while feeling like the room was lifting me up and down and the room appearing to sway left and right. I would also try to stand on one leg in the dark and gaze at the light holding this one legged position as long as possible thinking this extra balance demand would in time at least improve this darkness issue. If you have had or do have vertigo you will appreciate just how hard it is to stand on one leg for a period of time (seconds) in daylight never mind doing it in the dark.

I say all this because I just turned my lights off and for some reason realised how much steadier the world is.I have just stood in the same position all those years ago and there is movement but nothing like before. Hell I just stood on one leg and held position for 20 sec quite the feat since I used to fall within 1-5 sec/I guess I have come along way. It is easy to forget this when I still have those bad days and weeks but the majority of my time these past 2 months especially have been steadier.

Since starting this blog I have posted  a couple of times about a random week or two here and there feeling better only to take a complete nosedive back into vertigo ridden hell. I have never had more than a 2 week period where symptoms stayed less intense. These random better weeks only started happening 6 years into my journey.

However since Dec 1st I have had my longest period of less intense symptoms that I have ever had ( just over 2 months). I did have a really bad week a few weeks ago but snapped out of it only to continue this more manageable intensity of daily symptoms. How do I know it's better lately well I find myself not thinking about dizziness every time I walk from one room to the next and I don't find myself suffering in a overwhelming state of constant head fullness and vision fuzziness at all times and the blasted moving floor is not playing as many tricks on me. I don't know how long this will continue and I still have all the same symptoms daily but I hope my symptoms continue on this less intense steadier path. I sure appreciate the lift in weight.

I hope this gives you long term sufferers out there some much needed hope. You and me will get there eventually.

Swimmyhead

Dizzy Poll

I have been asked to encourage us dizzy people to complete a Dizziness poll created by fellow twitter follower stadsbader - dizzyme You can complete the poll via this link m.facebook.com/story.php?story_fbid=1547866628796275&id=1432266323689640 …. The results will be used for a doctor seminar this coming March.

The Winter Dizzies

Hi Everyone

Well after a full December of less intense dizziness and vertigo I am sadly back to feeling heavy headed and out of it. To go a whole month with my symptoms much less intense is a first but hopefully not the last time. The main symptom that basically vanished was my full pressured like head. You know that heavy, full, swaying sensation. It feels like a balloon expanded under your skull. That went away as did any noticeable headaches for the whole month and because of this my balance and sense of well being and clarity was much better and the visual and internal movement appeared and felt much less. I no longer felt like I was being pushed and pulled because of every shift of weight I made or because of every movement my eyes tracked. The sensations were steady and under control instead of all encompassing and erratic.

Why I had an easier month I do not know neither do I understand why I woke up roughly six days ago with a heavy head and weighted and all of the usual symptoms heightened. So it is back to feeling like a robot and taking more care and thought when turning from one room to the next.Small things like cleaning my teeth are once again a brain shaker. My visual perspective of height and depth is just plain wrong ( I know this since my kitchen now appears to be back on an angle the walls are breathing and I swear the ground is closer today). Also that zombie like vacant stare at an object but can't quite connect visually with it sensation is in full force. That being said I remember days even worse.

Anyhow I am pleased I had that month it is certainly a positive in my journey thus far. It's now the new year and hopefully by the end of 2015 there will be significant improvement as this is the year I finally commence treatment with a specialist neuro-otologist.

I best leave you guys now as this typing is sending me of my rocker (head is buzzing with swaying fullness)

Happy new year guys maybe this will be the year you and I get better.

Swimmyhead