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
Thursday, 20 November 2014
Friday, 14 November 2014
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
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
Tuesday, 28 October 2014
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
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
Thursday, 23 October 2014
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
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
Wednesday, 8 October 2014
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
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
Tuesday, 30 September 2014
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
Swimmyhead
Monday, 29 September 2014
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.
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