I just stumbled on this dizziness and vertigo support group - www.dailystrength.org/c/Dizziness-Vertigo
Swimmyhead
Friday 28 February 2014
Friday 21 February 2014
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
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
Thursday 13 February 2014
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
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
Tuesday 11 February 2014
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
vestibular disorders association - Other side of vertigo
dizziness and vertigo - Swimmyhead
Swimmyhead - Twitter
Wednesday 5 February 2014
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.
Swimmyhead
Tuesday 4 February 2014
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
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
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