Hope

Today has been one of those very rare less dizzy days for me. If only my symptoms would stay at this level instead of going back to the very uncomfortable disorientation that I have had to deal with for so long.  It just goes to show that my brain or whatever is causing the vertigo can actually improve albeit a very rare occasion. Sure, I do not feel normal but days like this are a massive improvement and make my life much easier. How good it feels to see the world clearly instead of through fuzzy vision. What a pleasure it is to walk and not feel the intense sensation of the floor moving up and down or slipping from beneath me. What a delight it is to walk and not see buildings sway left and right or for parked cars to not appear to move in my peripheral vision etc. What a crazy illness!

I really do not know how the hell I have managed to cope with this life altering condition for so long. Better days like this I do not take for granted.

I have had a handful of days like today during the last 12-15 months and they give me hope and lead me to believe that I will eventually get better. I just wish that day would hurry up and appear.

Swimmyhead

Barometric pressure and dizziness

I thought it would be worth mentioning that every time there is a sudden change in barometric pressure my vertigo and dizziness go insane. I know that it sounds rather stupid but I promise you I can honestly "feel when a storm is coming". During the past 6 years there have been a number of thunder storms and each time my vertigo (illusion of movement) and balance problems become much more intense and my vision fuzzes up greatly. The constant pressure and fullness in my head also increases. It is as if I am looking at the world through a haze or static, rooms appear smokey. It is hard to describe, I simply go back to feeling completely "out of it". This completely "out of it " sensation is a feeling that I am all too familiar with as I was completely "out of it" for the entire first 5 years of my vestibular illness.

Anyway, a couple of nights ago there was a few rumblings of thunder off in the distance and my symptoms heightened and I was back in my very fuzzy swaying world. There is a link between Migraine/vestibular migraine and barometric pressure. I have read about how pressure changes can increase headaches, vertigo and dizziness symptoms. This I can most certainly vouch for.

Still, everyday changes in weather effect me a great deal. For example a sunny day tends to lessen my vertigo somewhat. On the other hand a dull grey day increases my symptoms. I don't know, I must sound absolutely crazy but a vestibular problem can cause many crazy symptoms.

The thunder has heightened my symptoms again so I'm just sitting it out waiting for those rarer milder vertigo days I now occasionally experience.

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Swimmyhead

1-8 weeks

I thought I should make a quick post and say that I do not want to alarm anybody who is experiencing vertigo and dizziness for the first time. If you have been reading my previous posts you will know that I am a long time vertigo sufferer but this absolutely does not mean you will be too. I think it is important to say that the majority of people who experience dizziness and vertigo make a full recovery usually within 1 - 8 weeks. Some might have to deal with the issue a little longer and may need vestibular rehabilitation therapy (VRT) exercises to help speed up recovery. Of course you must go and see your doctor and get his/her professional medical opinion if you are experiencing vertigo and dizziness.

Long term cases like mine are rare and it is very likely you will be back to feeling fit and healthy sooner than you think.

Swimmyhead

My Workout and a little Rant

I have just this second finished a 30min cardio workout and to say I am sweating a little would be an understatement. The weather is glorious, sunny and hot but the heat made my workout extra hard. I have been battling to keep up with my workout routines lately, I mean I have done them all but I have been feeling a little sorry for myself during my workouts this week. I perform a lot of turns and punches whilst working out and of course every turn I make or every punch I throw causes the world in front of me to jerk and shift in my field of vision along with the awful head sensations that go along with the visual movement. Throughout I constantly have to keep myself from falling sideways and correct my balance. A workout is tough enough without having vertigo whilst doing it. I guess I hoped that all this movement would have corrected the balance issue a little more after a year of exercising, unfortunately not. I have spent all my late 20s and early 30s having to deal with this damn vertigo. I shouldn't have to feel like this at 33. I am supposedly in my prime. Some prime it is!

However I have much to be thankful for. If you have visited my website or read my previous posts here you will know that up until 12 months ago I had a job standing or walking never mind exercising. So it's a massive improvement really.

Since I am still constantly dizzy all day long I can sometimes forget just how much I have improved this past 12 months. It is simply because the level of vertigo on my better days that I live with now is still not good enough and still does not allow me to function normally. I am grateful for any improvement  but I want the dizziness gone. Nobody should have to live with any level of dizziness. My consultant told me this. Any level of dizziness is simply not acceptable. Due to the erratic nature of my condition I have not learned to live with it and I never will. I want it gone. Sounds ridiculous I know, here I am writing a post about me working out surely I can function normally?

Nope I cannot. I just have very strong will power and push myself hard to exercise in the hope that my brain and balance will just sync up. This is what motivates me to workout feeling the way I do. It is not because I feel great, it is simply my need and want to get better and live life again.

Living with vestibular dysfunction whatever the cause is very very hard no matter what level you are effected by it. You may have a mild or sporadic vestibular issue lasting a couple of weeks or months or you may be hit very hard with a chronic problem lasting years. Whatever the case, I am sure fellow sufferers will agree it is very difficult condition to live with. I know people who have had a typical 2 week vertigo problem then fortunately recovered. These people said it was the worst thing they have ever experienced. I also remember reading about a women who had beaten cancer and then developed a vestibular problem (labyrinthitis I think). She said that her vestibular issue was much much harder and made her feel much worse than the chemotherapy she had been through.

Evidently I am a mixture of emotions today. I came here to write about my workout and have ended up ranting.

Even after all the ranting, I have to say I am glad I worked out as it gives me a sense of satisfaction knowing that I am helping myself. I think I will give myself a slap on the back and say well done to myself. Well done for dealing with all I have dealt with these past 6 years, well done for always picking myself back up from those low moments, Well done for staying motivated and hopeful for a complete recovery regardless of how bad the vertigo, dizziness, vestibular rehab, medication side effects and exercise over the years have made me feel.

If you live with vertigo and dizziness which I guess you might since you found my blog then give yourself a slap on the back and say well done to yourself for coping. You will be hard pressed to find any sympathy or respect from others regarding this invisible illness. So give it it to yourself , respect yourself and say well done. Keep going.

Swimmyhead

A regular sleep pattern

This morning I feel rather tired. I have a slight headache and the sensation of the floor lifting me up and down is more present. I managed to get 6 hours sleep last night which in my former dizzy free life used to be more than enough for me but ever since the dizziness I have found that 6 hours tends to worsen my symptoms. Its too little. However, If I sleep for 8 hours which I hardly ever do then that amount of time can also increase my vertigo. It seems that the magic number is 7 hours. For some weird reason 7 hours is not too little or not too much, my dizziness and vertigo reacts better to 7 hours of uninterrupted sleep. The trouble is that lately I seem to waking up every couple of hours.

Talking of sleeping, I know many people enjoy what are called power naps. For me they make my balance and vertigo 10 times worse. I have never enjoyed a quick nap during the day or evening and it is something I have hardly ever done. These days I avoid it as best as I can because of how it effects my symptoms. Power naps are supposed to make you feel refreshed and recharge your batteries but they just drain me. I do recall a physiotherapist of mine telling me that napping must be avoided by people suffering from vestibular migraine and I guess migraine in general. People with migraine issues are supposed to stick to a strict sleeping routine with no variation. You are supposed to go to bed at night at the same time every night and get up in the morning the same time every morning. No napping in between. Vestibular dysfunction of any kind will tire you and many times I have had to fight my bodies want to nap. I hate those times when you lie down and your eyes begin to close as you begin to nod off and your not quite asleep but at the same time sort of dreaming. They always makes me more disorientated and nauseous.

A regular sleep pattern is something I find very hard to stick to. Sometimes I get 5 hours of broken sleep unable to nod off again and other times 8 hours completely uninterrupted. The times I go to sleep and wake up generally vary also. It is something that I must try to be stricter with as I am very strict when it comes to exercise, migraine diet,water intake and medication. I don't think including a regular sleeping pattern will magically cure me of my vertigo but it may help reduce symptoms from time to time.

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Swimmyhead

Invisible Illness

One of the hardest aspects of living with a vestibular disorder is the fact that you look completely normal on the outside. This "looking  normal" makes it very hard to find a sympathetic ear. The many life altering, outrageous symptoms of a vestibular disorder combined with the "looking Normal" can understandably make it very difficult for someone to truly empathise with your situation.

People may think that you are exaggerating your symptoms or looking for attention especially if the condition goes on and on. I have heard comments like  "Get out more" "Is it really that bad" "Stop thinking about it" "It's all in your head" but have largely ignored such wisdom and it is best if you do the same.

The truth is you can tell somebody until your blue in the face about your vestibular symptoms and the impact it has on your daily life but they will never ever understand or truly appreciate what you are going through. They will never appreciate just how difficult simple tasks like crossing the road, taking a shower, cleaning your teeth, standing, walking, turning from one room to the next or trying to hold a conversation actually are. You have an invisible illness and unfortunately this is the way it is.

However "looking normal" has its benefits as no one knows you are ill or have a disability unless of course you want them to. People won't treat you differently and make you feel self conscious about your condition.

Whilst most people look terrible when they are ill, you can take joy in the fact that when you look in the mirror even on your worst days, you still see a super sexy beast staring straight back at you, lol

Swimmyhead

Improvements

A few days back I posted a vertigo and dizziness symptom list and whilst I still experience most of those symptoms daily their severity has decreased somewhat this past year. I thought I would share the symptoms that have improved (they are still present but less severe). I am certain that I owe these small but very welcome improvements to my migraine medication, exercise and diet.

1. The awful detached feeling and fuzzy vision that plagued me for many years is much better these days. I absolutely hated the detached feeling I used to live with. It was as if I was observing the world from afar, seperate. I am sure the additional visual fuzz increased this "feeling out of it" state. The visual fuzz will still increase in the evening but is not always constant in the day now.
2. Unless I am having a bad few days when my symptoms decide to ramp up, I have found that the sensation of the floor lifting me up and down with every step is less severe most of the time. I still experience the sensation just not as powerfully.
3. Headaches are less frequent these days. I never experienced headaches until my vertigo journey started. I then found I was having headaches at least 4-5 days a week year after year. I assumed they were due to the fact that my eyes and brain simply had to work harder to balance and concentrate because of the vertigo problem. Now they are a little less frequent usually 1-2  a week.
4. Sleeping on my side was an absolute no no for the first 3 years but it got better. This is probably the first improvement that I experienced. I still might have a little spin now and again when I  sleep on my side but the sensation is much less severe.
5. Bouncing vision upon waking seems to be less intense these days.
6. Turning a corner, say from room to room is easier most of the time. I still cannot turn around as quick as I would like (still feel like a robot) but it is better compared to  the amount of motion I used to endure and witness when turning. 
7. The in and out of focus,video camera like world that we dizzies see is generally less intense most of the time. Sure I still deal with it all day long just not as consistently severe or as disorientating.
8. Thinking and multitasking has improved unless it is a bad day.
9. The ability to visually focus on an object is better most of the time. There was a time when I would try to look at an object and it was if my vision could not pin point it's location. It would have to bounce around before settling somewhat. It felt like I was looking through the object or person.
10. There were times when walking that the world appeared to bounce quite violently. This is better most of the time.
11. The bending and arcing of walls and floor etc is less severe.
12. Depth perception is better most of the time

Again I should state that all of the above are still constantly present but thanks to my medication they have improved. I do get bad moments,days and weeks but now I just wait them out knowing I will at least have a few days when symptoms are less intense and more manageable. Before my migraine medication all of the symptoms were severe all of the time with absolutely no let up.

A Slightly Dizzy Day ( A welcome change)

I am happy to say that I am having a very rare "slightly dizzy" day today. I love "slightly dizzy" as it allows me to somewhat function like a normal human being. "Slightly dizzy" is a walk in the park compared to the usual level of disorientation my vertigo causes. I can honestly count on one hand the amount of times I have felt this good over the past 6 years.

I would say that the intensity of the motion of self and the environment has reduced greatly. The dizziness and light head are still present but the visual motion is less. Unfortunately "slightly dizzy" days are a very rare and short lived occurrence. If only I could stay like this from now on, life would be much more manageable. I'm going to keep my fingers crossed. Onwards and upwards.

Dizziness and vertigo Symptoms

I first saw this symptom list at Dizzytimes.com. It is a list of symptoms published by the Vestibular Disorders Association and it describes my experience perfectly. I have modified the list somewhat to better suit my situation. These symptoms can be overwhelming at times and are always present. I am sure many of you will relate.

Vertigo and dizziness
▪ True spinning vertigo attacks, Constant visual vertigo or whirling sensation; an illusion of movement of self and the world
▪ Lightheaded, floating, or rocking sensation
▪ Sensation of being heavily weighted or pulled in one direction. Detached, spaced out feeling all of the time.

Balance Problems and spatial orientation issues
▪ Imbalance, stumbling, difficulty walking straight or turning a corner. Floor feels like it is lifting me up and down when standing or walking
▪ Clumsiness or difficulty with coordination
▪ Tendency to look downward to confirm the location of the
  ground
▪ Tendency to touch or hold onto something when standing, Activity increases Imbalance
▪ Sensitivity to changes in walking surfaces or footwear

Vision
▪ Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce,
float, or blur or may appear doubled. Eyes feel stiff and slow
▪ Discomfort from busy visual environments such as traffic, crowds, stores, and patterns. Walls and floors appear to arc and bend
▪ Sensitivity to light, glare, and moving or flickering lights
▪ Tendency to focus on nearby objects; increased discomfort when focusing at a distance
▪ Increased night blindness; difficulty walking in the dark
▪ Poor depth perception, Bouncing vision whilst walking, Fuzzy, static like vision

Hearing
▪ Fluctuating hearing
▪ Tinnitus (ringing ears, roaring)
▪ Sudden loud sounds increase symptoms of vertigo, dizziness, or imbalance

Cognitive and psychological
▪ Difficulty concentrating and paying attention
▪ Forgetfulness and short-term memory lapses
▪ Confusion, disorientation, difficulty comprehending directions or instructions
▪ Difficulty following speakers in conversations, meetings, etc., especially when there is background
noise or movement
▪ Mental and/or physical fatigue out of proportion to activity
▪ Loss of self-reliance, self-confidence, self-esteem
▪ Anxiety, panic

Other ( These luckily don't really effect me except for mild headaches)
▪ Nausea or vomiting
▪ "Hangover" or "seasick" feeling in the head
▪ Motion sickness
▪ Ear pain
▪ Sensation of fullness in the ears
▪ Headaches
▪ Sensitivity to pressure or temperature changes and wind currents

Labyrinthitis

For many years I was led to believe that I was living with uncompensated labyrinthitis as the onset of my vertigo and my symptoms were typical of this particular condition. Below is an insightful video interview with a labyrinthitis sufferer describing the symptoms and experience of living with a vestibular disorder.

Dizziness and Vertigo: Mal de debarquement Syndrome

I thought I would share a news report about two Mal de debarquement sufferers that I saw about 5 years ago. This particular news report always stuck in my mind because the symptoms and experience the two women describe in the video are exactly the same for me. I mean even the camera motion in the video is a perfect representation of how I see the world since my vertigo started.

It seems to me that all the different vestibular disorders be it Migraine associated vertigo, Bppv, Labyrinthitis, Meniere's disease, perilymph fistuala etc all share common symptoms. The root cause of the dizziness and vertigo that someone is experiencing may be different but people living with any of these conditions tend to share a similar experience. After all vertigo is vertigo.

I have been diagnosed with migraine associated vertigo but I can absolutely relate to mal de debarquement symptoms. This is a fantastic video to show your friends and family in order to give them some understanding of what life is like living with dizziness/vertigo.

Link Below:
 
http://abcnews.go.com/Health/video?id=4180415#.Ua3GR9fYWbo.twitter