What on earth do I have to do?

Not feeling very good at all tonight. My head is full and pressured and my vision is fuzzy. The sensation of being pushed and pulled is back in full swing. Just moving my head an inch is causing me to feel like I am falling or that the floor is moving from underneath me. I have just got back home from a 5 minute walk around my estate. It was not very pleasant at all. It is dark outside and that ramps up the vertigo and disorientation up a notch. My head is very sensitive indeed.

I have walked the estate a thousand times over the years since my vertigo began and many times I had to psych myself up just to walk those 5 minutes because it was so difficult and such a disorientating balancing act to do so. I guess I am bummed out tonight because after all my effort and all this time I am still having to feel like this much of the time. I have had better days this past 12 months or so but am never ever free of the sensations and walking around my estate just now almost feels like I am back to square one. What on earth do I have to do?

I have taken medications given to me, Undergone all the tests available to me, completed vestibular rehabilitation numerous times and recently started to exercise as much as I can tolerate which is pretty good going given the fact I have chronic vertigo. I have eaten correctly and time has certainly gone by but here I am dealing with the same issues day after day, week after week and year after year. Nights like this make me wonder why I keep trying and putting in so much effort. If only people knew how bad I feel daily they would wonder how the hell I keep going and keep trying so hard.

If people have seen me stroll by on nights like this they wouldn't have a clue anything was wrong. They wouldn't see a man struggling to maintain his balance, struggling to visually focus and observe the world and all that is going on around him, they do not know that this man's walking in a world very different to theirs, a world where solid buildings bend and breathe, where the floor dips and slides with every step or shift of balance, a world that morphs and sways, a world that is so disorientating and relentless. Know one knows except the few of us how hard it is!

I know some days recently have been better and I am thankful but I am just sick to death with it. Tired of opening my eyes and having to do another 24 hours of vertigo,dizziness,motion intolerance, whatever you want to call this thing. Sick of having to tolerate any level of dizziness.

Hopefully Ill be a little more upbeat and optimistic for my next post. Rant over

Swimmyhead

Dizziness in bed

Last night I experienced that awful rocking sensation pulsing through my head and body whilst lying in bed and dozing off. I was lying on my right side at the time and promptly awoke due to the horrible pulsing, swaying sensation that felt like it ran right through me. .

I have experienced this sensation many times over the last 6 years but fortunately it has been quite sometime since I have had to deal with it. I hate it, it is so disorientating. My body and bed feels like they are moving in rhythmic manner and because it is dark in my room I am unable to focus on anything except the little crack of light coming through my curtains which is now bobbing and swaying quite violently. So I did what I always do and that is to sit up straight, compose myself and get up and turn the light on. The sensation then goes away and I am back to my usual dizzy state. The experience concerned me a little as I have not experienced this kind of dizziness in bed so powerfully in quite sometime.

Swimmyhead

Dizziness and Vertigo video resource's

Here is a link to my dizziness and vertigo website specifically to the video resource section, where I have provided links to various videos regarding different dizziness and vertigo causes etc.  I will continue to update this page. I Hope some are of value to you.

http://dizzinessandvertigo.weebly.com/informative-video-links.html

Swimmyhead

Back To It

Well it's back to it then. My vertigo has once again ramped up a notch after having an unusual 2 week period of reduced intensity. The fuzzy/pressured head is back, motion sensitivity is back in full swing, turning and walking is yet again more difficult and all the other unwanted push, pull, lifting, falling sensations have elevated. The hoover is being dragged around the house as I type and the noise it is producing is sending me over the edge effecting my thought process.

So I guess I have to persevere and endure until my next better day whenever that may be? Hopefully not in another 6 years.

Swimmyhead

Living with Chronic Vertigo

Whilst browsing youtube I found a very informative video from a young woman describing her experience living with vestibular dysfunction. I am sure that just like me you will be able to relate to all that she has to say. Link below:

 http://youtu.be/sVD1KUIV89A

I actually feel sad after watching it, as it reminds me that many others have to live life the way I have been living. I mean I read about other people's experiences dealing with dizziness and vertigo but to actually see their faces in video form really drills it home. It makes me sad that us vertigo sufferers feel like we need to explain our illness and our actions because of it's invisible nature. However, it is personal videos like this one that help provide vertigo sufferers like me comfort and reassurance that we are not alone battling such a debilitating disorder. I appreciate how brave these guys are going on video and sharing such a personal story. Maybe I will make a video in the future.

Dizziness and vertigo is not a mental issue that we make up or can just stop thinking about. It is a real physical disorder of the inner ear and brain that manifests in debilitating visual and physical symptoms/sensations. The only mental aspect to a vestibular disorder is the depression one might experience due to the sudden life altering effects of vestibular dysfunction. Many think it's depression or anxiety that makes us feel dizzy. In actual fact we are depressed and anxious because of battling overwhelming disorientation all day everyday, not the other way around.

Who wouldn't be depressed living with such a isolating, debilitating and poorly understood/treated chronic condition? Our family life, social life, work life and everyday life are hugely affected and in many cases completely halted by our relentless symptoms.

It is not an illness that will get better overnight, it is not an illness that their is a magic pill for and it isn't an illness that one can learn to live with as there is no consistency (base level) and symptoms fluctuate and intensify and morph from one hour to the next. For many long term sufferers there is not a straightforward linear recovery. instead it's half a step forward and 6 giant steps back.

Swimmyhead

1 week and counting

It has been 1 full week and my vertigo has remained at a more manageable level. I have no idea why but I am not complaining. I have not experienced a full week in these past 6 years were my symptoms have not intensified. I did have one wobbly evening a couple of days ago and thought my good luck had run out but surprisingly the next day was pretty good.

Of course I am all to aware that better days do not mean I am suddenly going to get better. I am well aware that rare good days have occurred before only to go back to complete and utter disorientation. However, maybe I am turning a corner ,maybe this week will turn into 2 weeks. I am trying to not get my hopes up and remain realistic.

There was one day especially ( I think it was Thursday ) that was the best of the bunch. I went for walk and my vision was pretty damn clear (no fuzz whatsoever) the world looked different, dare I say it looked almost normal. there was much less visual vertigo and that blurring of moving objects that we vertigo sufferers experience was so much better. It felt amazing to watch the traffic go by and actually be able to track the cars and not feel an overwhelming sensation of being pushed and pulled or falling because of the visual movement. How lovely it was to feel like the floor was not lifting me up and down with every step I took. My head felt clearer, my vision sharper , my balance more stable and no headaches. I hope that this positive story helps others living like me. It goes to show that even after 6 years feeling overwhelmingly disorientated better days are possible. For so long I felt like i would never ever improve.

Today is not as wonderful as last Thursday but today's symptoms do not compare to the horror of years gone by. I am keeping my fingers and my toes firmly crossed.


Swimmyhead

Dizzytimes

Today I headed over to Dizzytimes.com. I have not visited the site in quite a while. It is such a brilliant place for dizziness and vertigo sufferers. So many stories and helpful advice from fellow sufferers. If you are experiencing dizziness and vertigo and have yet to visit Dizzytimes.com then I wholeheartedly advise you to do so.

 www.dizzytimes.com

Swimmyhead