Merry Christmas

It's Christmas eve and I am feeling festive. Christmas has always been my favourite time of year. I am home with my family and have just enjoyed a delicious Indian takeaway. I can't say we have ever had an Indian takeaway on Christmas eve before but god it was nice. Presents are wrapped and ready under the tree and I am about to watch the Griswold's Christmas vacation. I watch it every Christmas eve. It's funny, it feels like only last week I was watching it. The years are speeding up I am sure of it.

I should mention my dizziness shouldn't I since it's the reason for this blog. This will be my 8th dizzy Christmas (I can't believe it) but I am happy to report that for the last 3 and a half weeks the intensity of my daily vertigo has been less intense and more manageable. Of course I still have vertigo and all the other symptoms that come along with it all day everyday but at a more steady and manageable level. I think it is probably the longest period of time that my vertigo has remained consistently less severe. Normally it's up and down (mainly up) throughout the day but at present it is keeping at one consistent level. I am happy about this.

So Merry Christmas fellow Swimmyhead's maybe Santa will bring us each a new vestibular system.

Swimmyhead

Painful week but less dizzy

It's been 4 days post wisdom tooth extraction and I am still in pain. my right cheek swelling is slowly subsiding but the throbbing and intense pulsing pain continues usually worsening by late evening. To be honest I did not think about developing pain after the tooth surgery. I figured having a wisdom tooth removed would be the same as having any tooth removed (pretty painless). I had one back tooth removed years ago and it caused absolutely no bother but this wisdom tooth extraction is something else. Dental pain and vertigo how lucky am I?
That being said I must admit this week has been pretty good regarding the intensity of my vertigo. I am pretty damn steady. the vertigo is not overwhelming and disorientating. I am really glad about this because if I felt like I normally do dizzy wise and had to feel this face pain at the same time I would be feeling very sorry for myself indeed.

I keep joking to family that it was my wisdom tooth all along that caused my vertigo because I feel so much better since it has been removed. Of course this is not the case. I guess I am just having one of those weeks but hell wouldn't that be something, lol.

As I am typing this my best friend has just called to tell me his wife has just given birth to a baby girl which is fabulous news. They have to young boys so a baby sister is a wonderful addition. Great news.

Swimmyhead

Bloated chipmunk

This past Monday I had my lower right wisdom tooth removed. I had been dreading it especially since this past weekend I was a disorientated wreck. Fortunately though I woke up Monday morning feeling much more stable and balanced ( A stroke of luck) so when it came to lying down in the dentists chair I was feeling ok-ish. The dentist first explained to me what to expect . She told me about the swelling that will occur and how there will be  cracking sounds and stitches. I was fine about this as I am not squeamish. What did concern me was when she explained that I have a facial nerve that sits quite close to my wisdom tooth and that this nerve maybe banged and prodded during the procedure which may result in pro longed numbness of the tongue, lips and gums. I asked what she meant by pro longed? her reply was days, weeks sometimes years. Still I had no choice so I signed the consent form and the procedure began.

The extraction took about 30 minutes and was pretty painless. Lots of drilling and cracking but the only thing that was uncomfortable was the amount of pressure I felt on my jaw but what could I do. They numbed the area then whipped it out and stitched me up and I was good to go.

A few hours later the anesthetic started to wear off and pain started to appear. On one hand I was bloody thankful to feel the pain knowing that I was not going to have a permanent numb tongue and lips on the the other hand it was bloody awful pain so pain killers were swiftly thrown down my gullet. So it's been two days now and my face is still really painful and throbbing , my right cheek resembles a bloated chipmunk and eating is a real pain in the ass. It's actually more painful today. I am hoping the swelling and agony will start to improve come tomorrow.

On the bright side I am feeling less dizzier these past 2 days but as always cannot enjoy the steadiness due to the fact that my face feels like I  have been hit repeatedly with a sledgehammer but I am happy that the wisdom tooth has been removed. One less tooth to give me problems in the future,

Swimmyhead

Yay

Hi guys

Two and half years ago I visited a specialist (neuro - otologist) who after my many years of unsuccessful doctor visits and different hospital visits told me he will treat me and give me my life back. I was overjoyed and optimistic and was supposed to visit him 3 months later to start my treatment. Unfortunately things didn't go quite to plan as I could not get a referral back to see this man. I am glad to say after 2.5 years of miscommunication and waiting I am finally being referred back to this specialist to begin what I hope will be the treatment that will finally rid me of this Vertigo hell.

Each journey I take to see the specialist will take around 10 hours of traveling time (about 5 hours each way) which is hell of a lot of travel time for a 1 hour appointment and will be especially uneasy if I have one of my bad days but I am willing to do it if it means I don't have to feel like this anymore. I need to do it. So there you have it some good news at last. There is still hope.

Swimmyhead

Spinning Sensation

Hi Guys

It's been quite a crappy week in all honesty. I sit here typing this feeling extremely groggy and disorientated. I have only been awake one miserable hour and mornings don't tend to be good balance wise anyway after all that lying down we call sleeping ( isn't sleep supposed to recharge and refresh our battery's) not in my case or so it seems. I guess my symptoms have been much more intense again these past several days which I can't say has been easy. A week last Thursday I was doing ok-ish but by Thursday evening all my visual and balance issues came back full force and actually frightened me a little more than usual as the symptoms felt a little different than they have for quite sometime. The difference was that I experienced what I can only call as mini spins ( I don't know how else to describe the experience). I felt on edge, confused and disorientated.

Basically that rotational,spinning sensation increased to a different level a very uncomfortable level. An intensity reminiscent of my early years living with this thing. I spent the evening standing up then sitting down only to stand up again and walk around the house trying to get some sense of normality and grounding. It's a very disconcerting experience only fellow sufferers will understand.The spinning sensation was to the left. This rotational feeling was so prominent back in the early years of my dizzy journey. I do not miss it.

It was not a full blown vertigo attack like the one that started this nightmare but a more subtle mini spinning sensation. I don't know, its so hard to describe the sensation I feel but I suspect many of you understand what I am trying to say (I hope).

So I have spent the last week in a disorientated hell. All my visual symptoms are increased as are the balance sensations. The floor feels like it's throwing me around as I walk or stand, my vision is in and out of focus,stiff,static like and difficult to fixate. My head is full with heaviness and swaying pressure causing very small amounts of head movement to produce a real shock to the system. Hell, even stirring a bowl of porridge this morning made me tense my legs so hard in order to remain standing where I was instead of flying across the room.

I feel very detached from the world (surreal) and feel like I am looking right through everything I focus my eyes upon. I can't quite get my vision to connect and remain stable. I hope I have made some sort of sense. It has got to be one of the most difficult illnesses to try and describe but you guys already know that.

Swimmyhead

B12 Deficiency

Hi Guys

I feel absolutely exhausted since the moment I opened my eyes today. My vision is doing that blurry thing causing me to blink too many times a minute for my liking. My head is heavy and full with pressure thus I am more sensitive to moving around and visually scanning my surroundings . I simply feel very uncomfortable. Feeling exhausted has been a prominent issue ever since my vertigo began. In the early days just taking a shower would immediately leave me sitting down with no energy left to comb my hair. Mornings have since been pretty exhausting. I sleep anywhere between 6.5 to 8 hours a night but it makes no difference. I cannot remember the last time I woke up feeling refreshed and full of life. A good guess would be back in early 2007 before this journey dizzy started. To be honest one of my least favourite times of the day is that first moment I open my eyes. The room is always shifting/rotating and disorientating. Some mornings are worse than others but that sense of motion of self and of the world around me is always present every single day. It's such a joy to start everyday this way (NOT). Going to bed is no better. I spend the first 10 min or so usually darting upright because of the sensation of spinning/rocking/bobbing gets too much or that sudden feeling of falling. When this happens I tend to sit up right and try to fix my gaze on a touch of light coming in through the top of the curtains but this helps none since the room is dark and worsens the visual motion I perceive. Trying to maintain gaze on that crack of light is a fight in itself.

I was going to write about vitamin B12 after watching a video about a woman who was experiencing vestibular dysfunction that nobody could diagnose. No one could help her until one day a doctor decided to start giving her vitamin b12 injections. I don't think she was anemic or especially b12 deficient. Anyway long story short the injections resulted in her becoming dizzy free. I looked into the subject a little further and found that B12 deficiency can cause many vestibular dysfunction like symptoms in fact it can present and mimic a whole host of serious conditions. I suggest you do  a Google search guys and read up about b12 deficiency and associated symptoms. It cannot hurt.

Swimmyhead

Mr Head Pressure

Hi guys

Nothing much to report on these past few weeks. The dizziness is ever present (I don't think I need to bore you anymore with the vast symptoms list) you know how it is. I will say that the vertigo is at such level these past few couple of weeks that I have hardly stepped outside. I could if I really needed to but I just cannot be bothered walking down the street and have the visual world sway around me,disorientated and off balance. I have however kept to my now moderate exercise regime. I do 25 minutes a day regardless of how full pressured and dizzy my head is. Today is one of those days.I keep doing it hoping that the constant movement will correct this vertigo problem and also to make sure I at least move my body during the day. The rest of the time is spent wandering the house or sitting and lying down (head propped up of course).

It's a strange thing that the simplest of tasks such as walking, standing, turning, looking up and down and bending over are the hardest most disorientating things I can do to myself. Yet when I exercise the feelings,sensations and visual bouncing/jerking is still present but I move better and feel more in control. I don't know how to describe it. I think it has to do with not having to visually concentrate or focus on anything whilst exercising. I think my eyes get to relax (I don't know) and since I do it at home alone there is no noise or movement around me that would disorientate me further. It's difficult to describe. I guess exercise movements are more slow, controlled and intentional.To squat for example is a slow and almost mechanical movement. Whereas walking or turning quickly or simply responding and reacting to the normal everyday barrage of motion,visual input,auditory input that everyday life presents you is a constant assault on the brain and vestibular system.

Normal movement and cognitive response are achieved in a split second. It's automatic and natural. It is the automatic and unconscious  movements that are required in everyday life that I find impossible. For example I have to plan and am fully aware of every footstep I take in order to get from one room to the next. I am completely aware of every single head movement I make ( I need to be as one unconscious turn of the head may result in me swiftly darting left or right and possibly to my friend the ground). It is no way to live is it. Healthy people do not even consider such simple actions as they live day to day. Their vestibular system just works and in most cases I bet they are oblivious to having a vestibular system. So was I until May 2007. I personally feel like I move around like a badly weighted robot, To others I probably look like I am gliding effortlessly from room to room without a care in the world but the reality is I am bouncing off the surrounding walls and walking stormy seas. Sorry I am just waffling now. I wish I was more articulate.

Keep Going.

Swimmyhead

Bad back pain but......

Hi guys

I am having one of those long awaited nearly normal days today. I wish I could understand this process. I have not felt like this all day as I woke up pretty out of it as usual but these past few hours the intensity of my constant dizziness and balance issues have greatly reduced. Don't ask me why. I just thought I would let you guys know besides I will most likely be back to being vertigo ridden in a couple of hours wondering what the hell went wrong. I am trying to enjoy the moment but I am struggling with acute lower back pain after injuring myself this morning whilst exercising my back. I pulled, Something popped and I fell to the floor wincing wondering if I could get up again. So I am currently in agony but on the bright side my head feels pretty decent. Always something.

Swimmyhead

Chronic illness 2

A young man describing chronic illness. He suffers from Lyme disease but the way he describes his experience living with an invisible condition just like ours is perfect. By the way Lyme disease symptoms can be very similar to symptoms of a vestibular disorder.

Swimmyhead

Chronic illness

I Thought this lecture was very interesting. A video titled accepting your chronic illness by Dr Diane Lachapelle. She discusses chronic illness using chronic pain as the prime example. However if you simply substitute the term pain with the term dizziness it's totally relatable. I still have a problem accepting my current predicament.

Gluten Free Dizziness - Update

Hi guys

Just a quick update regarding the gluten free diet I have been sticking to these last few weeks. I have not experienced any reduction in dizziness and vertigo unfortunately nor have I felt an amazing sense of well being that many report once they go gluten free. That being said I HAVE stopped having those frequent stomach pains after eating. Only once have I felt stomach discomfort in the past 3 weeks or so. This is a huge success since I was experiencing stomach pain after eating certain foods up to 5 times a week. I guess it is safe to say I may have a slight gluten intolerance. So it may not have helped my dizziness but it certainly has helped my stomach. The main culprit seems to be bread so I now buy a gluten free loaf called Genius. It's smaller than your usual loaf and a touch expensive but I will stick to it from now on.

My vertigo has been much more intense these past 6-7 weeks. It's been rough. However yesterday and today it's settled a little, so physically I am steadier and the world appears a little more stable (the visual motion of back and forth, up and down has reduced). I do have a headache but it is not making the vertigo worse.

So there you have it a quick little update. Keep pushing on and take care.

Swimmyhead - Twitter 

Swimmyhead - Dizziness and vertigo site

Swimmyhead

Disorientated

It has been a very unsteady 6 weeks or so. This past weekend was just awful.Completely overwhelmed by the sensation of motion etc. walking like a robot, turning and bending slowly, disorientated with the walls appearing to move back and forth. The house has become that obstacle course again. The head pressure has been immense.It has felt like my head would explode at times. Static like vision causing everything to appear in a thick foggy haze. I seem to have slipped back into the old routine of my symptoms progressively getting worse as the day moves on. Evenings have not been good. Family members just walking by me in the hall are causing me to be thrown off balance, the push and pull sensations are strong. The crunch from eating a cracker is shaking my vision and disorientating me. These things I have never gotten used to and never will. Living life with this vestibular condition is to merely exist. It's been way too long with so much effort taken to have to constantly keep going back to this overwhelmed state but what can I do?

Swimmyhead

It is Balance Awareness Week 2014 - 15th-21st September

A video by the Vestibular Disorders Association promoting balance awareness week 2014.

Swimmyhead

Dizziness Forum

Here is a link to a site/forum with many people discussing their own experience with vertigo and dizziness. There seems to be quite a few of us left suffering with this poorly understood and debilitating condition.www.patient.co.uk vertigo-and-dizziness

There is also useful links to various dizzy related websites and forums in my Useful websites for Swimmyhead's section found on the right of this dizziness and vertigo - swimmyhead blog.

Swimmyhead

Sick as a pig

Fuzz and pressure in my skull have been my predominant symptoms this past week in turn causing increased balance/motion sensitivity, visual motion and visual disturbances, well everything really. Yep, I have felt like I am back at square one at times. Simply watching television made me feel sick as a pig just the other night. Out of nowhere I suddenly became so nauseous, you know those waves of sick feeling? It's been roughly a month or so since I had those miraculous few weeks when I felt close to normal. What happened there?

This morning is not bad so far balance wise but I have had bloody toothache since yesterday afternoon. It seems like I cannot stay away from the dentist this year. I only went 2 weeks ago and had a filling which decided to pop out only 2 days later eating a rivita. So I need that looking at again along with this other tooth that has decided to ache and throb. Does it ever end?

I am currently sat here psyching myself up for a steady 30min home workout. Whilst my dizziness is less severe I might as well make the most of it.

UPDATE: Just finished a very mild workout but now my vision is not keeping up with my head movement at all. Disorientated.

Swimmyhead

Gluten Ataxia

Hi Guys

After having been on the migraine diet for suspected chronic MAV these past 2 years or so I have developed a small interest in food and have learned a little about clean foods and not so clean foods and the various chemicals and ingredients some foods contain. Another reason I am interested in good food is simply because I attempt to perform daily exercise at home and good nutrition is important for the body to fuel energy and repair itself after exercise.

The migraine diet has not cured my vertigo as I think the days that my symptoms are less intense are due to the medication I am taking, but who knows? Anyway due to my interest in food and because I am always searching for an answer to my dizziness, I happened to stumble upon a condition known as gluten ataxia which is caused by the consumption of wheat, rye and barley. For some reason or other it is only recently that I found that wheat is one of the foods you should not eat whilst on  a migraine diet. Upon learning this I did nothing about it because if I took wheat out of my diet on top of the other foods I have eliminated I wouldn't know what to eat. I happen to eat plenty of wheat daily and am now wondering if the gluten intake is contributing to my dizziness and equilibrium problem. A gluten intolerance can cause many health issues some being problems with balance and equilibrium and vertigo (gluten ataxia).

I have never concerned myself about gluten before but have often wondered why for the past 12 years my upper abdomen and chest hurts after eating noodles,bread and cereal for example. I always brushed it of as one of those things that everybody deals with from time to time only its much more frequent for me these days. My stomach hurts maybe 4-5 times a week 20 min after eating certain things. So as of next week I am going gluten free for 2 months. I have found some gluten free alternatives to the food I eat and we shall see how it goes. If the abdomen pain goes away that would be a blessing. If going gluten free helps my overall wellness (as it appears to do for many people)  then that would be quite something. No harm in trying. Like I always say exhaust all avenues.

Maybe it is something to think about guys

Here are some links about gluten ataxia and gluten intolerance:

Is dizziness a sign of gluten allergy

Gluten Ataxia

livingwithout.com - Gluten ataxia

The dentist

Hi Guys

The last week and half or so have been pretty poor head and balance wise. Constant head pressure and increased motion intolerance (all the usual stuff). I have actually just come back from my dentist appointment which proved to be a fairly uncomfortable experience having had to lay backwards two or three times whilst I had a clean and filling. It ain't fun watching the swirling ceiling up above.  I was in a disorientated daze when trying to sit upright again and again to swill my mouth out. Oh, and what fun I had walking out of the building through it's swaying corridor. I had to take a few minutes outside to compose myself. I did ask my dentist about TMJ and how it may cause vertigo. The conversation didn't go very far as all he had to say on the subject was that he has heard of it but it's very rare (a lot of help that was). I felt like saying having bloody chronic vertigo for over seven years is rare but I have it.

Anyway once I had gained composure I decided I would walk through town and finally take a visit to my local Specsavers to ask them if they test for  a specific eye condition that can cause dizziness and balance issues known as vertical heterophoria ( I have mentioned this condition in a previous post RIGHT HERE. I was pleasantly surprised when they said they can test for vertical heterophoria. Imagine if a simple pair of glasses could fix this never ending vertigo of mine. We shall see.

Swimmyhead

MdDs

Thought I would share this totally relatable story from a MdDs (mal de debarquement syndrome) sufferer. I come across it on the MdDs foundation website:

http://mddsfoundation.wordpress.com/2014/08/01/my-disorder-may-be-invisible-however-i-refuse-to-be/

Swimmyhead

TMJ

Feel really crappy upon waking today. Very heavy, full pressured and swaying head. It doesn't help feeling tired. It is also a dull start to the day so the rooms are darker in the house and that is probably contributing to the spaced out feeling and balance problems as it always does (weird). I have not felt this uncomfortable for some time. I have a dentist appointment next Thursday, I hope to god I do not wake up feeling like this having to walk into town and sit in the further vertigo inducing dentist chair.

I do actually have a question to ask my dentist next week. Over the years I have heard about a Jaw condition called TMJ. It is when your jaw is misaligned and it can cause issues opening your mouth and pain in the jaw as well as popping,crunching,clicking of the jaw. Anyway I have read that this condition may cause vertigo as it is so close to the ear. Now I have always thought it was nonsense that your jaw could cause vertigo so have never ever asked anybody about this problem. For many years now I have been unable to open my mouth wide without fear of it locking, it seems to dislocate and jump sharply to the right when doing so. I have a very loud snapping/crunching sound when opening my mouth wide and sometimes when I eat. The crunching can cause mild pain on the right side of my jaw. My father actually had TMJ when I was a child. I remember him having an operation on his jaw to stop the clicking he experienced when eating. However, I do not recall him ever experiencing vertigo or dizziness of any kind. It seems like I have inherited a wonky jaw.I guess it cannot do any harm asking my dentist next week about the TMJ and if it could be related to the constant dizziness I have. Exhaust all avenues I say.

Here are 2 links to videos about TMJ:

Michigan head and neck institute video:
https://www.youtube.com/watch?v=wii5Tcd_5ek

TMJ for Dummies Video:
https://www.youtube.com/watch?list=UUiQqwVknjhMHKmQM8LL_b5w&v=xjSlRZnfvIc#t=225

Swimmyhead

Dizzier

Hi Guys

After a pretty good couple of weeks I am back to being a little more dizzier again. Not terribly but but more than I would like. Those couple of weeks were certainly different, I actually felt nearly normal. Believe me when I say that I never thought I would ever get to say that. I have had a little taste of normality and I want it again. It just goes to show that even after so long disorientated with all the false sensations my brain can actually get to that better place. why it won't stick I do not know, then again I have no idea why it improved.

It's frustrating having to go back to moving a little slower and to concentrating harder visually but after experiencing such an improvement I remain hopeful easier days will occur again soon. Hopefully my good days will now increase and my harder days become less frequent, we shall see.

Words cannot describe all I have been through this past several years. The first 5 being absolutely horrendous.Only if you have experienced a severe vestibular upset can you understand how life changing it is truly is. How scary this disorder has been.

One day you are absolutely normal the next day life suddenly is robbed from you. You have to go through and try to make sense of the hellish symptoms day after day then you have to deal with all the months/years of worry trying finding out what is wrong, getting test after test then have to nervously wait for the results etc. We then have to face the vertigo enhancer called vestibular rehabilitation and also make radical adjustments to our diet eliminating this and eliminating that, the foods we all love we can no longer have. The dizziness is just one element to this life changing condition.The feeling of being isolated and alone with no one too talk to who understands. The feeling of letting friends and family down, being a burden and  feeling like a drama queen and a fraud. Having to explain your symptoms or constantly tell people you are still not well really can drag you down. Watching everybody move on in life whilst you stand still unable to make future plans.

Some of us have to deal with strained relationships with family/friends because of our vestibular illness, many I guess have lost a loving relationship/partner because of the burden and stress this illness causes. I lost a 7 year relationship with a girl because I simply couldn't do anything and became depressed as hell. An ill person is not easy to live with.I don't blame her at all as it takes it's toll not only on you but everybody close around you. People lose jobs/careers and self worth because of  a vestibular problem.We have to deal with a lot of background mental/psychological  issues not only our physical problem. Most people will never understand the true full impact this invisible illness causes.

What I am trying to say  is that our symptoms are one thing but all the other stuff going on in our heads in our minds are just as hard to deal with. As a dizzy person respect and sympathy is hard to come by. To all you dizzy/vertigo sufferers reading this YOU HAVE MY RESPECT. Deal with your vestibular disorder as best as you can. If people walk away from you during this difficult time then I say "let them walk" they are the ones you don't need in your life at this trying time. Focus on you and everything you can do to get better. I have had a brief taste of normality after several long years. If I can then so can you.

https://twitter.com/Swimmyhead
http://dizzinessandvertigo.weebly.com

Swimmyhead

So It Continues......

I am still doing pretty well guys. These past few weeks have been different for sure (good different). I have had a few weeks here and there this past year when my vertigo has somewhat tamed which of course gave me hope. This time I feel within arms reach of normality. 7 years of absolute CONSTANT hell and here I am finally experiencing a big improvement.

I am not better but much improved for most of the day. The level of intense disorientation that I have lived with is incomparable to the dizziness I have currently. That being said I am not about to do a Michael Jackson spin any time soon but keeping things slow and just pottering around feels pretty good. I guess a normal person would jump in my head right now and wish to get out but I can accept this lower intensity of symptoms. I'll take it with open arms. Of course I wish for a full recovery and feeling the way I do recently makes me believe I can get there. If I do get there you might well catch me performing Michael Jackson spins and naked cartwheels around the garden in utter elation.

There have been a few hours here and there when  I have forgotten that I am Mr Vertigo. Pottering around the house, taking a shower not even thinking about dizziness. Then suddenly I realise I have not given the dizziness/vertigo a second thought. This is huge progress. Normally the vertigo it is completely overwhelming and I cannot think of anything but. Taking a shower and drying myself off has been quite the task these past several years.

I am sure a bad day or weeks is on the horizon but I will suck it up and wait for more of the better days to come. I guess the task is to continue to have more better days than bad that would be a sign of progress for sure. Keep going guys.

Fingers and toes crossed.

Swimmyhead

If you're going through hell, keep going

I still have minimal symptoms. The best I have felt in years. The visual external swaying and internal push pull sensations are slight. Balance is much stronger. If I turn too quick there is a jerking of the environment but at least it's not strong otherwise. It truly is like looking out at a whole new world. I really do not know how to explain how different I feel and how different I am able to move around. I don't feel like a bloody robot, stiff and having to turn slowly. Always concentrating hard on every step I take.

That constant heaviness/swaying pressure of the head and slow unfocused vision is not overwhelming. Sure there is still a head sensation present. It's like a slight headache and lightheaded but that is ok. I wish I could tell you guys the reason why I have suddenly improved but I just don't understand it. It could be a number of things. Maybe it's just time.

Now I need to be clear. I still have all the constant symptoms. I am not yet out of the woods and don't know if this will last (probably not given my track record) but I think it is important that I share this good news to help you guys who are also suffering the same fate.

You may have only just begun this hellish journey or been at it for quite some time. You spend your days scared and worried about the future, watching friends and family living life and moving on whilst your stuck primarily indoors in a disorientated hell. You psyche yourself up just to stand up and walk across a room or your garden.Watching television or reading a book is no longer comfortable. You might well be lying down right now concentrating hard to follow and read the words on the screen as they appear to snake and move all the while your head is spinning. It spins when you lie down so you dart straight back up again to get a sense of composure. It spins when your sitting upright. The fullness and heaviness in your head is overwhelming and the vision issues you have exacerbate everything else. You feel like there is no hope in sight. You feel lost, alone, afraid and a burden to everybody else around you. You may feel like a drama queen or a fraud and do not know who to turn to. It seems like nobody understands your predicament or can help.

Day after day, week after week ,month after month, year after year you battle to get through each day wishing and praying to feel well again. Hoping that tomorrow will give you back the life that this illness has taken away from you.
For a long time (years) symptoms may be very harsh with absolutely no change in how you feel. I tell you to keep pushing on, Allow yourself to have those sad moments/days and weeks even but then stand up and keep fighting. Do what you can do to get through each day. Only do what you feel you are able to do. Do not hurt yourself in order to live up to other peoples expectations. Arm yourself with knowledge about the various conditions and causes of vestibular dysfunction and seek professional treatment. If one specialist or doctor is not working for you then seek another. Get five professional opinions if need be. If you are told to complete a course in vestibular rehabilitation perform the exercises religiously. If you are given medication give them chance to work. Start to eat more healthy and keep yourself hydrated with water. What you put in your body is very important. Good food and hydration may help more than you think. If your doctor has no problem with you exercising then please do. I really believe that the daily exercise I started 2 years ago has helped me get these better moments ( I could be wrong of course).

Know that you are not a alone and that Swimmyhead and many others feel exactly like you do. Keep your fingers crossed for me guys and Ill leave you with my favourite inspirational quote that always pops into my mind in the bad times.

"If you're going through hell, keep going"

Winston Churchill

Read more at http://www.brainyquote.com/quotes/quotes/w/winstonchu103788.html#vPmdiPm89FAoMAYJ.99

Swimmyhead

Still going strong

I'm still going strong. All symptoms are present but minimal regarding intensity. I had a more difficult day yesterday and thought that my luck may have ran out but today has been surprisingly good. Early morning I received a call from a friend asking if I would help him move some heavy garage equipment. I had a bit of concern as I am usually disorientated upon waking but said yes and got to work. Any level of disorientation I had lifted pretty rapidly and I was glad to be out helping and mingling with the world.

I expected a dip after such heavy lifting and much interaction but instead my symptoms have remained consistently manageable. So much so I went for a walk in the sun and enjoyed looking out at a very clear and steadier world.

I should say that symptoms do increase late evening. They always have and still do even on these better days. Once the light begins to dim unsteadiness and proproiception difficulties increase but not as drastically.

I do not know if this is the breakthrough week I have been yearning for and if it going to last. I am sure there will be worse days to come but if I could just have more of these better days that would be a blessing. I hope that my story is helping some of you long term sufferers out there. Try to keep positive even though you feel anything but. This is such a cruel illness because recovery is not linear. It's up and down, forwards and backwards. I have had some of my worst moments only this past Jan/Feb nearly 7 years in. It can be extremely disheartening when you have battled for so long thinking you are getting somewhere and then suddenly your back at square one. I cling on to hope and will continue to do so.

Swimmyhead

NEARLY NORMAL

I am so thrilled at the moment because my vertigo has subsided a great deal. Dare I say that I almost feel NORMAL. I currently have a headache but that has not increased the imbalance and visual motion like it normally would. there is no rhyme or reason for it. I would describe the sensation today as simply lightheaded.

My vision is clear not fuzzy. The swaying sensation in my head that accompanies every head turn is minimal. Motion tracking with my eyes is pretty good as I am not feeling like I am falling when seeing someones hands move or when cars go by etc. I am pretty steady as the floor feels more solid and stable instead of lifting me up and down or sliding out from beneath me. I do not feel so detached. I could go on and on and on.

Of course I am waiting for hell to reappear as my very rare better moments never last but this is brilliant. I want to scream I FEEL NEARLY NORMAL but no one would understand and would obviously think the crazy dizzy person is even more crazy. These past days have given me a taste of near normal and in comparison to the persistent ever present vertigo that I have lived with every single waking second since May 2007 this is wonderful, there is no comparison.

I have had some bloody low and scary moments throughout this illness and for years I believed I had no chance of ever feeling like my old self and everybody else again. Well I can tell you that is not the case at the moment. I hope whoever is reading this and going through a long battle with any cause of vestibular dysfunction and who feels like there is never going to be a better day, I tell you there will be. It might be 2 weeks from now or 2 months or maybe 2 years, damn it might be several years like myself but it can happen.

I just pray that I continue to improve upon this more manageable level. I do not want to slide back to being a vertigo ridden zombie and battle through each day anymore. If only I could just continue to improve from this point. It seems possible after so long feeling impossible.

I pray that July 2014 is the month I finally begin to come to. I think I have done my fair share.

Health is like money, we never have a true idea of its value until we lose it.  ~Josh Billings
http://www.quotegarden.com/health.html

Swimmyhead

Not Bad

It's been a pretty decent week I am glad to report. Symptoms have been much less severe most of the time. In fact my symptoms have been acting different. For the first 5 years symptoms were severe. In the last 2 years since taking medication my symptoms intensity have improved somewhat some of the time but will still tend to increase as the day goes by so that by evening I am good for nothing. However this week my symptoms are waxing and waning throughout the day. For a couple of hours I am much better then a little bit later the fuzzy vision and head pressure sets in and the motion intolerance begins only to improve yet again later in the evening or vice versa. I hope this is a permanent improvement and a positive sign. A sign that my brain,ears and eyes are finally trying to fight and talk to one another.

When my symptoms decrease to this more functional level  I feel like normality is within arms reach. I would say I function at around 7 out of 10 as opposed to a 3-4  out of 10. There is now a huge difference between my bad days and better moments. Of course I have yet to control and stop the bad days/weeks from recurring and am under no illusion that maybe in an hour from now or two days from now I will be sucked back to a disorientated hell. Maybe this time I'll be wrong (I hope so).

Swimmyhead

Invisible Disability

Is vestibular dysfunction a disability? I would have to say yes although I do know many people and a certain doctor who would scoff at  the idea. Anyone living with a considerable long term vestibular deficit I am sure would agree with me. In fact I am sure many guys and girls who have experienced vertigo for a only week or two would also agree.

To be absolutely honest I am not comfortable describing my condition as disability. In fact I feel like a liar and a fraud if I ever mention the word. Most people including myself would consider broken limbs/missing limbs, blindness etc as being disability's which of course they are. They restrict a person from doing normal activity's and living everyday life with ease.

This is what my condition has done to me. It has impacted my life greatly and made simple tasks such as walking around my house, preparing food, going out or holding conversation pretty damn difficult and demanding. I am not exaggerating. I could go on and on about the numerous ways it effects my daily life. Quality of life is seriously effected if one is suffering from vestibular dysfunction.

We sufferers get no sympathy only sly smiles and remarks. I know you guys have felt the same way when trying to express how you feel to friends and family and even doctors. I for one have always felt stupid which of course I should not but I have no bandage on my head or missing limb(thank god) to show the true impact it has on me second to second.

I guess it all depends on the level of dysfunction one is suffering from to understand what I am saying. I have read about many people who can still live life and work through the dizziness and they would be first to admit that they are lucky they have not been hit harder like other people such as myself. I mean it's done a real number on me. The level of disorientation I have had to put up with especially the entire duration of the first five years was absolute hell. I am still not better and am still restricted as to what I can and cannot do on a daily basis.

Yes I can walk, yes I can turn a corner ,yes I can read or lift my leg up. I can now even workout from time to time but does this mean those tasks are easy and that life is easy for me? I know looking from the outside I look pretty damn capable but I tell you that we living with vestibular dysfunction find all of those simple tasks and many more very demanding.

Vestibular dysfunction is a cruel invisible disability that that not many take seriously. We go to bed at night rocking and swaying through the mattress and wake up to our daily tightrope walking act. It isn't fun and it is not easy living with a broken vestibular system. A system that is vital in making sense of our surroundings and spatial awareness. A system that controls our balance, makes sense of our visual and auditory inputs. A system that works hand in hand with our muscles and joints.

It is a disability but it is hopefully a disability that we long term sufferers will hopefully overcome. I try to see it as a temporary disability one I will eventually recover from.

Swimmyhead

Brain Highways: The Vestibular System

A great little video describing vestibular dysfunction. It is aimed towards parents whose child might be displaying such signs. However it is really accurate and a great video to show friends and family for better understanding.

Swimmyhead

It's a beautiful sunny morning

It's a beautiful sunny morning here in Wales which always lifts my spirits. A bright sunny day always reduces my symptoms a little compared to a dull and dark day. I don't know why? maybe it's because I am dependent on my vision to balance me rather than my wonky vestibular system and the brightness allows me to see more clearly and sharply. I don't know, I am probably talking a load of rubbish but a sunny day definitely helps me.

I feel a little better again these past few days after having a week or so of increased motion, imbalance and head fog etc. So today I woke up and decided a 25 min workout was in order. I have just finished my workout and am drenched in sweat. I have said it before but I really don't know how I manage to push myself to workout feeling the way I do. I get into a press up position and the floor bends and arcs in front of me, I do numerous burpees and I am sure you can imagine the push/pull/falling sensations I experience as well as the visual jerking and rotation of the room around me. It's disorientating. It's difficult but I get a real sense of accomplishment after each workout knowing that I beat my broken vestibular system into the ground. You would think that my brain or whatever is wrong would just get used to all the movement that I have punished it with and correct whatever needs correcting.

I have also been doing some yoga which involves holding body poses in inhuman ways. Balance is everything when it comes to yoga but my brain will not adapt. I can hold a pose with effort but once I stand up and finish my workout my head is still heavy and the world is still swaying. Doctors will tell anybody with a vestibular issue to move around as much as they can and retrain the brain. It's frustrating as I have always moved and tested myself from day one. I have put myself in every contorted position known to man and walked miles and miles over the years but here I am still battling daily.

I am eating strict except for the sneaky little bag of peanut M&Ms that keep showing up. I allow myself to have several a day and that is all. They are actually sitting by my side as I type calling my name but I won't give in as I don't treat myself till the evening. I worked out on an empty stomach so it's time for breakfast which will be a bowl of porridge made with oat water and I will add some fresh blueberries and strawberries.

Keep pushing on

Swimmyhead

7 years

Hi guys
I Thought I would check in. Well, my steadier two week streak is officially over. As of last Thursday afternoon and I am firmly back to my disorientating life that I still cannot get used too. It was actually 7 years last Sunday that I woke up with the vertigo that began this tough journey. Hopefully that's 7 years closer to the end of this thing. Maybe I have over done it with the chocolate cake deserts and bags of peanut M&Ms that I have consumed these last few weeks? Tut tut.

So no more treats for me. It's back to the bland migraine diet (although I may still have a handful of M&Ms every so often. I really wish I had never started eating those addictive little cretins). I will continue my workouts to further tax this brain and balance system of mine and I pray another more manageable two weeks are just around the corner.

Swimmyhead

A sense of balance

It's been a week since my last post and I am pleased to say that my head is still maintaining some sense of balance. It really has been a very rare week indeed.. I think the only other time I have felt this steady for this long was sometime last year when I felt a significant improvement for a full 2 weeks. I am hoping and praying that this time something will stick. If my condition stayed at this level of dizziness then getting better seems possible. Keeping my fingers crossed.

In last post I mentioned a sudden whistling that has appeared in my right ear. It has been pretty annoying so I did a little research and found that wax in the ear could cause temporary tinnitus. I did not think I had wax in my ear as it did not feel blocked or muffled but all the other symptoms are present such as itchiness,tinnitus and slight earache. I also read that headphone use can cause wax to build up (I wear headphones everyday to make music or listen to music and watch tv etc) and that wearing ear plugs can cause the same problem (I insert ear plugs every night to go to sleep). So, I decide to buy some olive oil yesterday and see if anything improved. I am glad to say it did. The whistling stopped for a solid five hours. It came back a little less prominent last night but today has been great thus far. I will continue using the olive oil drops this week and hopefully the damn tinnitus will be gone.

Oh, I nearly forgot to say tat this past two weeks have been a little experiment of sorts regarding my food. Not only have I reintroduced eggs into my diet but I also scoffed 2 small chocolate cakes last week and am through my second bag of peanut M&Ms. As you know chocolate, eggs and peanuts are part of the avoid list on the migraine diet but so far so good.  Headaches have been few and far between recently. I guess that is why I feel somewhat better. I just hope the M&Ms and chocolate cakes don't come back to haunt me. I do feel a little guilty eating all this chocolate but I still workout everyday and burn it off.

I hope you guys are having better days, if not just keep pushing on and believe that better days will come. I still cling on to that hope every time I go tumbling back down into the disorientating hell that is vestibular dysfunction.

Swimmyhead

Eyes

I have had a few decent days this week. More stable and easier to move about without having to be aware of every turn or step I make. Once again I do not know why the dizziness and motion intolerance has calmed somewhat. There is no rhyme or reason but it's a pleasant change as you can imagine. However I have been having an issue with tinnitus in my right ear this past week. It is not something I have had to deal with before and it's rather annoying when in a quiet room or when going to sleep. It's not a ringing as such more like a faint broken whistle. Now it could be down to the fact that I have been mixing music via headphones lately (I hope I have not done any permanent damage due to the noise exposure) or more hopefully something is changing for the better as I am more steady (wishful thinking maybe). Anyway It ain't too bad but I do hope it goes away.

In my last post I talked about the eye condition vertical heterophoria (misaligned eyes) and how it's symptoms appear to mimic vestibular dysfunction symptoms. It is something I will be looking further into as I feel and always have that my eyes are causing the vertigo/disorientation I live with. Ever since my vertigo attack that started this nightmare, my eyes have never felt the same. It has always felt like I have to strain and battle with my eyes to keep focus or my gaze stable. It feels like my eyes work independently and not together. For instance talking to somebody can wear me out and increase all the balance and visual issues within minutes and I swear it is because I have to fight to keep a stable gaze and focus. I really feel that the vertigo and the years dealing with it has effected my eye muscles and maybe that is why I am stuck with this issue. I have never had to wear glasses fortunately but maybe prism glasses might just help. I know I have nystagmus (involuntary movement of the eyes) thanks to the vertigo but I think it would be wise to get tested for exophoria and in particular vertical heterophoria since I have double and blurred vision frequently. Exhaust every avenue I say.

One other thing to mention is that I thought I would begin (once again) doing basic vestibular rehab exercises 2x a day. Simple moves such as holding my finger out at arms length and moving my head left and right whilst maintaining focus on my finger etc. Basically I am doing a number of eye strengthening exercises. I have done this many times before for months on end without success but now that more time has past maybe they will help (again wishful thinking). It just feels right to try.

Here is a link to some Cawthorne Cooksey Exercises (eye and body exercises)

Swimmyhead

Vertical Heterophoria Syndrome

Vertical heterophoria is an eye condition whereby one eye is higher than the other. The difference is not observable when looking at oneself in the mirror. I have learned that it can cause a vast number of physiological problems extremely similar to the many causes of vestibular dysfunction. The numerous symptoms can also be present ALL of the time.

I had stumbled across this particular problem years ago whilst researching anything vestibular related but swiftly brushed it aside thinking it was some stupid new medical term. Unfortunately I did not look at the vast symptom list. I have been told by a number of doctors that I have visual vertigo and I have to say my problem certainly feels visual. I cannot track motion, read without skipping words, I have a hard time maintaining focus and gaze on one spot.It's like I have to fight and strain my eyes to keep them on point. Busy visual stimuli (shops,traffic,moving visuals on screens etc) all are difficult daily as is walking around shops,holding conversation and walking without rearing off. My vision always feels stiff/slow and out of focus. I experience double vision/shadowing in one eye one day and in the next eye the next day on a weekly basis. Blurred vision usually in one eye at a time is frequent since this all began. Other times in between there is no blurriness or double vision.

Anyway, If this is the problem like it has been for many then treatment is fantastic and just requires the person to wear prism lenses for a while to correct the problem. In fact significant improvement in all areas can occur within days or weeks. I really feel this is something I need to be tested for since I have exhausted nearly every avenue I can think of without success. I just hope they test for this and treat this eye disorder in opticians around the UK.

Here is a list of some of the symptoms caused by vertical heterophoria. The list was taken from verticalheterophoria.com

Dizziness Headache Anxiety Lightheadedness Nausea Unsteady Walk Poor Coordination Poor Depth Perception Motion Sickness Covering an eye easier  Hard to maintain a stable gaze

Eye Pain Neck Ache Crowd Anxiety Sensitivity to Light Sensitivity to Glare Double Vision OverlappingVision Difficulty Reading Difficult Reading  Comprehension Skipping words/Lines

Tilting Your Head Pain when moving eyes Upper Back Pain Shoulder Pain Shadowed Vision Losing your Place when Reading Fatigue when Your Reading Blurred Vision

Dana White (UFC president) and Menieres Disease

I am a big fan of the UFC and only just found out that ultimate fighting championship president Dana White suffers from vertigo attacks caused by Menieres disease.There are more interviews on youtube where Dana White discusses his experience and life with vertigo.

Swimmyhead

Mal de Débarquement Syndrome

A link to a recent interview with a Mal de Debarquement sufferer on the Tv show The Doctors that might be of some interest. I tried to post the video but blogger wont let me.

The Doctors

Swimmyhead

Feeling S*****

Since my diagnoses of chronic vestibular migraine (two years ago) I decided I would do everything to help myself. If you have read my Blog. you will know that I have done just that. From taking the medication prescribed to me and completing numerous rounds of vestibular rehabilitation to changing my whole diet and getting rid of all junk (the foods I love). As you know I also began to workout daily despite the fact I feel like S*** every waking hour (Sorry to be so vulgar but s*** is exactly how I feel). I figured that if i got the rest of my body in shape then maybe my vestibular issue would correct itself. I can tell you that I have done more squats, burpees, press ups, lunges and runs than I care to think of.  All the while dealing with a head that simply hates movement of any kind.It's been tough and much harder than one can imagine (unless you also live with vertigo daily) All this exercise and wishful thinking has not helped my vertigo brain at all. I really thought it would. Not many people suffering vertigo would attempt to walk never mind exercise, and that's fair enough because it is a bloody horrendous thing to live with. I decided to do it for me and have to say I am gutted that it has not improved my condition.

However, what it has done is improved my health and body. Sure, I really cannot feel the true benefits because of how crappy my head and vision is daily but I know I am fitter, I know I treat myself better diet wise and I know I have improved my physique. I am stronger and fitter than I have been in about 15 years.

Working out may not have been the answer to curing vestibular dysfunction but it's taught me that dedication,will power and perseverance can work wonders. I will continue my fitness journey and hope it will eventually correct whatever went wrong with me back in 2007.

Anyway despite the relentless head issue I was successful at losing weight and toning up. Here is why:

1. The WANT to workout and be fitter, healthier, stronger (It begins with you)
2. Dedication 
3. Perseverance (results come in time. Those first few weeks are hardest and you want to give up because nothing seems to change but carry on because all that initial effort eventually starts to appear).
4. Substitute bad food for good healthy food(very important)
5. PORTION CONTROL Very important, I love digestive biscuits and pizza and I still allow myself to eat them. However instead of eating half a pack of biscuits or eating a whole pizza I practice portion control. I eat 2 digestive biscuits daily and have 2-3 slices of pizza once a week (not the whole thing). Do I want the whole pizza or the whole pack of biscuit? hell yeah but I control myself. 

Crazy  isn't it. I am fit as hell but dizzy as F***. Keep positive guys

Swimmyhead

dizzinessandvertigo.weebly.com
https://twitter.com/Swimmyhead

Vision

When trying to explain my condition to a friend or family member I use a number of phrases such as Dizzy, lightheaded, heavy headed, swaying, spinning, swimming, wobbly, off balance, lost in space etc..... Simple layman terms that most people could at least imagine somewhat. What I do not talk about as much are the visual problems that go hand in hand with a vestibular disorder. My vision issues (fuzziness,blurred, inability to hold gaze or track movement very well) are constantly present and are as problematic as the spinning head sensations. I have said it before but I hate using the term "dizzy" not only because it sounds cute but it's as if that is all I am dealing with. A damaged or poor functioning vestibular system causes numerous problems especially visual issues.

Swimmyhead

When the world spins......

I saw this on twitter posted by VEDA and thought It would be a good idea to share.  It is a book written by a VEDA member Linda Zonana who was diagnosed with Meniere's disease. She wrote this book to share her own personal experience and also to describe vestibular disorders and the impact and frustrations of living with such a condition. It might be very useful for friends and family to read to better understand our predicament.

CLICK HERE to go to the Vestibular Disorders Association (VEDA) facebook page for more details.

Swimmyhead

Here we go again

Here we go again..........

Groundhog Day

Hi guys

It's been a couple of weeks since my last post. I wish I could say that my vertigo ridden hell is over but that would be a big fat lie.  If only normality would appear as fast as it was taken away. Anyway the last few weeks have been neither here nor there really. My days have not felt great nor have they been the worst symptom wise. I'm living my very own groundhog day. I eat the same things, do the same things and feel the same way day after day. I hate the fact I cannot be spontaneous or make exciting plans because of this condition. On the bright side it looks hopeful that I will be commencing my treatment in the near future, fingers crossed.

Swimmyhead

Turning point

After such  negative post last Sunday I am glad to say that come Wednesday I have been feeling much better. This thing is a constant up and down, I guess it's better than a constant down. It has been a rougher few months lately so I hope this is a turning point as I need any kind of relief I can get. Headaches have been kept at bay this week. I am thinking that onions and tomatoes might possibly be a headache trigger for me. I don't know but I have stopped eating them. We shall see.

My current diet is pretty healthy. It mainly consists of fruit such as pears,blueberries and prunes (these are allowed on the migraine diet). Vegetables such as broccoli,carrots,cauliflower,sprouts and leafy greens like spinach and lettuce. I am now using these fruits and veg to make Quinoa salads and stir fry dishes with. Quinoa  is something I had never tried before but reportedly is very good for you. I do not eat any red meat anymore instead stick to chicken or fresh turkey slices. For drinks I have pure pomegranate juice, Rooibos tea and water. Breakfast consists of a bowl of porridge made with Oatly milk. For treats I do allow 2-3 digestive biscuits. I am happy eating this way knowing that not only is it supposed to help with my vestibular issue but also that it is good for me. I would be lying if I said I did not want to shove a massive greasy pizza or Indian take away down my gullet and gorge on a big fat chocolate cake but somehow I just control myself.

I am still keeping proactive by working out everyday regardless how intense my vestibular symptoms are. I am still taking the starting medication I was given daily and my diet is stricter than ever. What more can I do on my own? What I need is to start the treatment plan proposed to me, this has proved very difficult for some reason.

I hope you fellow vestibular dysfunction sufferers reading this are getting better or at least having some relief from this disorientating world.

"When your young and healthy, it never occurs to you that in single second your whole life could change"
Annette Funicello

Read more quotes at http://www.brainyquote.com/quotes/topics/topic_health.html#OTIvItIA6RIRqrTQ.99

Swimmyhead

Every second of every minute of every waking hour

Well my balance and vision issues have heightened yet again. I am having major issues trying to watch television, my ability to track movement is way off. I am a boxing fan and tuned into last nights events only to be disorientated and sickly at the sight of the fast movement on screen. I spent the evening as if in another world. Walking around the house from room to room was a full scale assault on the senses. Simply standing still was difficult and uncomfortable. The swimming inside my head and the illusion of movement too much. When it is like this I have to psyche myself up just to walk across the landing to the bathroom. I dare not look down as the distance of me and the floor seem off, the floor may bend or arc. The whole thing is very disorientating.

Feeling like this always alarms me as it reminds me of the first 4 - 5 years that I was constantly functioning at such a low level. Having to function like this is no way of life. I read somewhere the other day ( I will try to find the article and put up a link for you guys) that the low quality of life that vestibular dysfunction causes is comparable to that of an MS sufferer.

I don't know what to do anymore. I don't know why I am stuck this way. I have fought this thing head on over the years without success. In a couple of months it will have been a constant seven years plagued by vertigo. Every second of every minute of every waking hour. How is this possible? It sounds absolutely ridiculous I know. Most people get better or at least have a break here and there, not me.

I don't understand what went wrong. One day I was fine then I went to sleep and BOOM my life changed. It has been a test of character and patience for sure. It has been embarrassing having to explain the way I feel to family and friends and doctors over the years. Honestly I have felt judged and felt like a liar when trying to explain the way I feel daily. It is even worse seven years on as now people just expect me to have gotten used to it or that I must at least be better than I was. It isn't the case. I feel as bad today typing this as I felt the very first year.

I am hoping that one day I will go to sleep and BOOM ,wake up absolutely normal.

Dizziness and Vertigo.weebly.com - Swimmyhead

Twitter - Swimmyhead

Swimmyhead

Dizziness and vertigo support group

I just stumbled on this dizziness and vertigo support group - www.dailystrength.org/c/Dizziness-Vertigo

Swimmyhead

Headaches

Well I have been up and down this week, had a raging headache last night but am glad to say today is much better thus far. I am working hard trying to find foods and recipes that I can eat (sticking to the migraine diet). It is a bit of a  chore since everything I used to eat and everything I want to consume is simply not allowed. Anyway, I was a little naughty yesterday as  I made a Chinese scrambled egg and tomato stir fry for my lunch yesterday. I know I am supposed to avoid egg and tomatoes but I couldn't resist. It was lovely but six hours later the raging headache began. Is the tomato and egg dish to blame? I don't know because I still get headaches when I am not eating them. The headache make the vertigo and vision issues much worse.

My headache frequency has certainly increased this past 2 months or so. I am having them at least 2 times a week. It's a bummer. I am still exercising daily so maybe that is the cause, again I do not know.

I have been diagnosed with three or four different vertigo causing conditions over the years. Firstly, Benign Paroxysmal Positional vertigo (BBPV), when I did not improve in a couple of weeks after numerous Epley manoeuvres it was thought to be uncompensated Labyrinthtis. For years I believed this to be an accurate diagnoses based on the constant vertigo and other sensory issues but after years of rehabilitation and no improvement I was finally told I was suffering chronic vestibular migraine, this being my current diagnoses. Mal de debarquement syndrome was toyed around with.

Anyway I find The migraine diagnoses hard to understand to be honest. How the hell does one have a 7 year, all day everyday chronic migraine. I don't suffer a lot of pain with headaches more of a fullness and pressure ( they are more painful lately) and I don't suffer a lot of headaches, all my symptoms rage on regardless of headache or not. I have to believe in what I am told I guess, after all the last consultant I saw is an expert in this particular field. It is hard after taking migraine preventative medication for so long and sticking to a migraine diet as well as exercising daily not to see a constant big improvement in my symptoms. It just has not happened. A little improvement has happened for sure but not an improvement I can jump for joy about.

Is it migraine making me feel this way? Well I certainly feel worse when the headaches arise and the medication I am on has helped this past 22 months or so. When I look at it like this then I can see that maybe vestibular migraine it is. I hope so because further medication tweeks might just be the key. I just got to get back to my consultant.

"If your going through hell, Keep going" - Winston Churchill

Swimmyhead

Relief

I am very happy to say that today is the day that I have some significant relief from the hell that is vestibular dysfunction. My constant symptoms have decreased in intensity and has been significantly more manageable. As usual I have no idea why this is. Maybe the strict sleep pattern and the strict food monitoring has helped, I don't know, but whatever the reason I am having my best day since Sept/October. The whole of December was rather Hellish but nothing compared to this past January and early Feb. My symptoms went haywire, took five GIANT steps back and kept me housebound most of the time apart from the occasional walk in the evening.

I would be a happier soul if the intensity of my symptoms would just stay more like this and remain constant. Instead the intensity just goes  up and down but mostly remains up as you know. Of course hell will reappear sooner or later, it always does but today is better.

It's strange, the world feels and looks different when it is like this. The vibe is strange but a good one. It's almost like I am in a different reality, I suppose I am. I have after all spent nearly several years in an alternate reality. Normal folk would think what I have just said is very strange I suspect but only us vertigo sufferers know how real and drastic our perception and sensation of the world around us changes because of a vestibular problem. Today, I am in a world that I am not used to. I am nearly in reality but not quite. It's a world I am not used to but certainly glad to be part of. My vision is clearer, everything appears sharper and in focus. My head is not as heavy or pressured and slow/ I am not being pulled aggressively when walking or turning or simply watching somebody walk by. The visual rocking and swaying is less. I am jealous of all the people who get to live in this more steady world. I have missed it.

However it is not perfect. I am of course still having to deal with my symptoms. I cannot move or turn as fast as I would like and I am not free of the floor lifting me up and down sensation etc but I'll take it and hope that there is more of these days or should I say even better days ahead (That is wishful thinking).

I did go to the dentist today which increased my symptoms and made me rather uncomfortable. Being lowered and lifted up and down in the dentist chair numerous times will do that. The vertigo was a little unnerving but once I had the work done and got out of the chair with  a second or two to compose myself of course, I was ok. Normally I avoid shops if I can but today I entered a few and was pleasantly surprised at how well my vertigo ridden bonce held up.

Anyway that's it. Hopefully I can drag this out a bit longer but I'll probably be back blogging tomorrow about how hellish I feel and that I can't turn my head more than an inch.

Swimmyhead

Vestibular Neuritis

Here is an interesting personal story about one woman's struggle living with Vestibular Neuritis:
vestibular disorders association - Other side of vertigo




dizziness and vertigo - Swimmyhead

Swimmyhead - Twitter

Sherlock Holmes

This past month I have been watching all of the 1980s Granada series of Sherlock Holmes starring Jeremy Brett as Sherlock. I absolutely loved it especially Jeremy Brett's portrayal as Holmes. He was fantastic and I cannot think of anybody who has played the role better. Since watching this brilliant series I have tuned into another sherlock Holmes show called Elementary starring Jonny Lee Miller, this is a fun modern take on the famous Holmes and Watson partnership. Watson is played by actress Lucy Liu. Needless to say that I am also catching up on the BBC Sherlock series starring Benedict Cumberbatch and Martin freeman. These two actors are brilliant and I am thoroughly enjoying it. 

That said, Jeremy Brett will always be Sherlock Holmes to me.

Jeremy Brett as Sherlock Holmes

Swimmyhead

Sleeping pattern

I wrote a quick post the other day saying how I felt a little better, well that did not last. I continued to feel wretched and completely "out of it". The last 2 days have been particularly awful resulting in a sudden banging headache yesterday evening that lasted right through to bedtime. That is two painful headaches that have occurred within 5 days of each other. My symptoms are worse before the headache happens and even more intense during the headache itself. Once the headache goes away I am left with the aftermath and then it all repeats. My brain never gets chance to fully relax before the next increase in symptoms. The vertigo never subsides.

As you know I have tried everything and done everything to help myself over the years but to no avail. I still cannot understand how I am left this way after an acute attack of vertigo back in 2007. What the hell happened? what exactly has gone wrong? Most people experience vertigo which leaves them bed ridden for a few days/weeks and then everything is back to normal. Me, I am stuck living every second of every single minute fighting it.

The only piece of advise I can think of that I have not strictly adhered to is to maintain a consistent sleeping pattern. My sleeping regime is all over the place. One night I go to sleep at 12.00 the next night I go to sleep 3.00am. I might sleep for 5 hours one day  or 9 hours the next. It varies day to day. I cannot see how fixing this can help solve the problem after having sticking to strict diet changes, exercise regimes, rehabilitation, medication etc. I am all out of ideas and have little faith that changing my sleeping routine is the key. Let's be honest it's not going to be is it?

That said, I am going to try the strict sleeping pattern from now on. Hell I am doing everything else I may as well do this.

I don't know what has changed recently or why any little progress I thought I had made has taken two giant leaps back. It's scary and frustrating but I will keep trying and pushing on, after all what else can I do.

Swimmyhead

A little better

Finally my vertigo has tamed a little. I am not completely overwhelmed by it. Sure it's still ever present but I'll take it compared to the last 2-3 weeks of hell. I will admit I was not  a big believer in the migraine diet, I really couldn't see how food might effect my vertigo but I have changed my mind. Since the weekend I have gone MSG(Monsodium Glutamate) mad. I have scanned every packet and food product in the house and have avoided anything that contains or appears to contain MSG. It makes eating a little boring but it's better than feeling like c*** all day everyday. I have been eating original Shredded wheat in Oatly milk or Porridge with Oatly milk  for breakfast and fresh turkey and lettuce on plain bagels for lunch. My dinners have been based on vegetables.

Am I vertigo free (hell no) but symptoms have come down in intensity. Ya know this whole vertigo thing is confusing and tiring. I still am not sure why the vertigo increases some weeks and why others it's a little tamer. If I exercise I am dizzy, if I don't exercise I am dizzy. When I eat right I am dizzy, when I don't eat right I am dizzy. If I take medication I am dizzy and if I don't  take medication I am dizzy. I am simply dizzy all of the time and cannot put my finger on what helps and what doe's not.

I think eating correctly appears to help or maybe my symptoms reducing alongside me changing my diet is pure coincidence, I don't know? I guess I have to say the medication has helped since I was completely non functional for 4 years or so before I was prescribed anything. It's difficult to say because I still have a great deal of vertigo to contend with even on my better days. The fitness workouts I have been doing have been great physique wise but it ain't retrained my wobbly brain.

Oh well there ya go, at least I am having some rest.

Swimmyhead

Monosodium Glutamate

When I was diagnosed with chronic vestibular migraine my consultant told me to avoid foods containing MSG (monosodium glutamate) and that i should stick strictly to a migraine diet. This i did or should say thought I did because after much research I have found that MSG seems to be in nearly every product in the supermarket. Even products clearly stating that there is no MSG present still may have MSG in them. The whole thing is confusing but the truth seems to be that many ingredients on the back of food items contain or produce free glutamate, the most active chemical of monosodium glutamate.

So for all you vestibular migrainers out there here is a link to an informative website that lists all of the common food ingredients found on the back of food products that contain processed free glutamic acid (MSG) - http://bit.ly/LWgsz2 

I have learned that migrainers should avoid monosodium Glutamate in there diet. I will be even stricter in the future.

Swimmyhead

No Let Up

Well guys I am still feeling awful. There has been no let up regarding my symptoms. Yesterday my balance and visual motion took a further nosedive. Soon after followed a booming headache which has kept me awake most of the night as the pain intensified if I lay down. I'm fuzzy, foggy and heavy headed as I sit typing and the thought of getting up and pottering around the house today is something I will have to psyche myself up for. I am back to perceiving the world as if I have my mobiles camera attached to my eyeballs. I have slow and jerky vision. i can only describe it as If am missing frames as I walk and move. I hate this thing.

I am hoping that these past crappy weeks have been leading to this sudden painful headache and now that I have it,  my symptoms will begin to settle somewhat. These last couple of weeks have probably been the worst that I have had in a long time. I almost feel like I am back at square one. How can this be?

After a little over 6.5 years I am still having to feel like this. There is no consistency with these damn vestibular symptoms.

In the past I have briefly discussed how I have been sticking to the migraine diet and how I was not sure if it was helping me, yet over Christmas I decided to treat myself a little. I had a little chocolate, cheese and crackers, pizza, egg and yogurt and have continued to do so in small amounts. Now I feel the worst  have felt in ages. Maybe the strict diet I kept was helping after all. It's time to welcome back the migraine diet with open arms.

I am actually trying to eliminate all MSGs (monosodium Glutamate) from my diet but after more research into the subject it appears that it's in the majority of food we eat. It is pretty damn hard to avoid if not impossible.

I hope I will be posting a more positive blog soon, until then take care guys.

Swimmyhead