I am getting better again yay! Im am so happy and over the moon that Im improving again I put this down to pitzotifen which I have been on for nearly four weeks now. Im not stupid the vertigo will ALWAYS be there but Im hoping this a new chapter for me again and these last few weeks are a distant nightmare. I got through a pregnancy and giving birth feeling like total crap and a newborn baby and night feeds feeling like crap.
Im proud of me in the lowest moments I wanted to end it all but I read a quote that kept me going
DON'T GIVE UP THE BEST IS YET TO COME!
Tuesday 4 December 2012
Wednesday 28 November 2012
My dizzy friends are the strongest people I know
I just did the school run I dont know how I cope and carry on feeling like this day in day out I put on an act everyday of my life.
I am tired of telling people I feel ill so Ive just stopped saying it plus I dont want to keep crying again and go into a deep depression which is where Ive been the last few weeks I have to have hope it will get better again or whats the point in carrying on.
I never wanted to be dizzy but if I hadn't been I would never of met some amazing people in my life. My dizzy friends are so strong a lot have jobs and just have to carry on and feel like hell all day Ive been there I know what its like its such a struggle.
The things some of us do to keep our family//friends happy just to keep up appearances and not let anyone down. I like to think were kind of special in a way you have to be made of strong stuff to have this illness and then still continue in normal life. I see people on Facebook moaning about a cold or a stubbed toe and I wish I had their problems at least it would get better a cold will go away a broken leg will heal but the dizzys seem to stay around a long time for most of us.
I wish sometimes I could shake people tell them to be grateful that they have their health I would do anything for mine back and be who I used to be but I cant this is my new normal for now at least.
Im glad I got dizzy in one way as Ive made friends for life X
I am tired of telling people I feel ill so Ive just stopped saying it plus I dont want to keep crying again and go into a deep depression which is where Ive been the last few weeks I have to have hope it will get better again or whats the point in carrying on.
I never wanted to be dizzy but if I hadn't been I would never of met some amazing people in my life. My dizzy friends are so strong a lot have jobs and just have to carry on and feel like hell all day Ive been there I know what its like its such a struggle.
The things some of us do to keep our family//friends happy just to keep up appearances and not let anyone down. I like to think were kind of special in a way you have to be made of strong stuff to have this illness and then still continue in normal life. I see people on Facebook moaning about a cold or a stubbed toe and I wish I had their problems at least it would get better a cold will go away a broken leg will heal but the dizzys seem to stay around a long time for most of us.
I wish sometimes I could shake people tell them to be grateful that they have their health I would do anything for mine back and be who I used to be but I cant this is my new normal for now at least.
Im glad I got dizzy in one way as Ive made friends for life X
Saturday 24 November 2012
Someone take this away from me
Ive got up today as bad as ever I cant walk properly I feel like I will fall ll the time Im getting horrible dizzy spells that just make me feel sick. This is the worst Ive ever felt in my life Im close to giving up right now, I told my husband to leave me and find someone else because I dont see a future for me anymore.
I cry all the time and when I do my ears block up and I dont know why I wish I could sleep and not wake up Im sorry to my family for causing this pain on them I dont mean to but there are no good days everyday is bad and sometimes worse than the day before.
I dont see a future :(
I cry all the time and when I do my ears block up and I dont know why I wish I could sleep and not wake up Im sorry to my family for causing this pain on them I dont mean to but there are no good days everyday is bad and sometimes worse than the day before.
I dont see a future :(
Friday 23 November 2012
When the depression hits :(
Im so deflated today I thought I was getting a bit better. I dont know whats happened to my body since I got pregnant and its kicked this shit all off worse than ever!
My ears were going mental with the hissing last night really hissing and today their just as bad. I dont know if a change in the weather causes this as it was raining heavily.
I feel as though Im being pulled over again today and my left ear is blocked and whistling Im so past tired of this now Im a mother of three children and I struggle to look after myself somedays.
There are times I just dont contemplate being here anymore everyday is a struggle for me now the kids are the only thing keeping me going. I wish someone around me in real life could understand what Im going through :'(
Sorry or the moan but it has to be done or I will go mad.
Maybe I will be back when Im more positive!
My ears were going mental with the hissing last night really hissing and today their just as bad. I dont know if a change in the weather causes this as it was raining heavily.
I feel as though Im being pulled over again today and my left ear is blocked and whistling Im so past tired of this now Im a mother of three children and I struggle to look after myself somedays.
There are times I just dont contemplate being here anymore everyday is a struggle for me now the kids are the only thing keeping me going. I wish someone around me in real life could understand what Im going through :'(
Sorry or the moan but it has to be done or I will go mad.
Maybe I will be back when Im more positive!
Thursday 22 November 2012
Ssshhh ears
So I dont seem to be housebound now at least I can do the school runs again without crying to my Mum for help. I made the mistake this morning though of carrying my baby whilst dropping the boys in and I feel off balance and dizzy and all I was thinking was please don't drop the baby! So at pick up I will use the buggy at least I can hang onto that for support.
Ive got tinnitus again today this symptom comes and goes for me but is very common in balance disorders it also changes ears I forget how annoying it is until it comes back for me its like when the radio is stuck in between stations that sort of noise.
I feel like Im on a boat today the boat feeling is a new one for me it came on recently with the new relapse but symptoms with this swap and change. Sometimes I think I feel my brain actually trying to work this stuff out and recover. I didn't realize till I got this how dizziness affects your life because our balance system is our body's sense of well being so when that mal functions it makes us feel very unwell as our well being is gone.
Sometimes you can fight it and carry on with the day but sometimes I've learnt you just can't.
Im glad at least Im improving but I don't feel good and I don't feel well that's the thing I never feel totally well or refreshed I guess its a permanent hangover infact I felt better with a hangover lol
I hope 2013 brings me back into a kind of remission from this like last year.
Will keep you posted :)
Ive got tinnitus again today this symptom comes and goes for me but is very common in balance disorders it also changes ears I forget how annoying it is until it comes back for me its like when the radio is stuck in between stations that sort of noise.
I feel like Im on a boat today the boat feeling is a new one for me it came on recently with the new relapse but symptoms with this swap and change. Sometimes I think I feel my brain actually trying to work this stuff out and recover. I didn't realize till I got this how dizziness affects your life because our balance system is our body's sense of well being so when that mal functions it makes us feel very unwell as our well being is gone.
Sometimes you can fight it and carry on with the day but sometimes I've learnt you just can't.
Im glad at least Im improving but I don't feel good and I don't feel well that's the thing I never feel totally well or refreshed I guess its a permanent hangover infact I felt better with a hangover lol
I hope 2013 brings me back into a kind of remission from this like last year.
Will keep you posted :)
Tuesday 20 November 2012
Shopping,School runs & compensation!
I visited My husbands Nan this morning I have not seen her in a long time and she met my new son for the first time.
This is the first time I've been able to visit a family member since he has been born I still feel quite dizzy but I'm at a level I can cope with it again and go out a bit even though I still feel uncomfortable most of the time. I managed the school run although I do walk as though Im attached to a pole, people coming up to make conversation is always a fun moment as half the time its the last thing I want to do :) although it appears unsociable and I am far from that its something you cant help at times.
Sometimes when I go shopping I dont even know what Im picking up and putting in the trolley I cant be fussy I grab the first thing on the shelves many times Ive got home and picked up oranges instead of onions or something lol I hate standing at the till to queue I feel trapped by the person in front and the one behind and somehow I always seem to pick the queue where something goes wrong like the woman infront not being able to find her card or something by that point Im usually hyperventilating with beads of sweat running down my forehead! I try to do my shopping online these days !!!
With any vestibular injury there is a compensation process I was told that with migraine you get attacks it can attack your balance organs which then leave you with the balance problems and dizziness. You should begin to compensate at this point but usually you have another attack before your body gets chance so you start the whole long process again. This is where medication comes in which is used to help prevent future attacks so true compensation can take place.
Its a hard concept to get my head around at times and accept the diagnosis but I know now that this is what I have and thats half the battle. With my episodes I can get flashing auras and a pins and needles in my face and numbness. Occasionally I get a sore scalp so it feels very sensitive to touch I do not know if this is part of the migraine process but I should think it is.
I dont like the way doctors and even specialists associate migraine with pain it can come in many forms and affect people in different ways I prefer to look at it as a neurological disorder as when you tell people you have migraine they just tend to think its a headache which is far from it in my case at least.
I am hoping this blog gets out to people who may have not even heard of MAV and educates them but one thing this illness has taught me is compassion for others who may have an invisible illness so for that Im grateful.
This is the first time I've been able to visit a family member since he has been born I still feel quite dizzy but I'm at a level I can cope with it again and go out a bit even though I still feel uncomfortable most of the time. I managed the school run although I do walk as though Im attached to a pole, people coming up to make conversation is always a fun moment as half the time its the last thing I want to do :) although it appears unsociable and I am far from that its something you cant help at times.
Sometimes when I go shopping I dont even know what Im picking up and putting in the trolley I cant be fussy I grab the first thing on the shelves many times Ive got home and picked up oranges instead of onions or something lol I hate standing at the till to queue I feel trapped by the person in front and the one behind and somehow I always seem to pick the queue where something goes wrong like the woman infront not being able to find her card or something by that point Im usually hyperventilating with beads of sweat running down my forehead! I try to do my shopping online these days !!!
With any vestibular injury there is a compensation process I was told that with migraine you get attacks it can attack your balance organs which then leave you with the balance problems and dizziness. You should begin to compensate at this point but usually you have another attack before your body gets chance so you start the whole long process again. This is where medication comes in which is used to help prevent future attacks so true compensation can take place.
Its a hard concept to get my head around at times and accept the diagnosis but I know now that this is what I have and thats half the battle. With my episodes I can get flashing auras and a pins and needles in my face and numbness. Occasionally I get a sore scalp so it feels very sensitive to touch I do not know if this is part of the migraine process but I should think it is.
I dont like the way doctors and even specialists associate migraine with pain it can come in many forms and affect people in different ways I prefer to look at it as a neurological disorder as when you tell people you have migraine they just tend to think its a headache which is far from it in my case at least.
I am hoping this blog gets out to people who may have not even heard of MAV and educates them but one thing this illness has taught me is compassion for others who may have an invisible illness so for that Im grateful.
Monday 19 November 2012
On a tilt
So at 37 weeks pregnant I noticed I was feeling dizzier and dizzier. I wasn't to worried at first I had already had weeks like this before but then always went back to a kind of baseline dizziness.
But as the days went by the dizziness became intolerable and I was getting very worried I started going to the doctors again but they said whilst pregnant they could do nothing for me.
I had my baby boy at home as planned but I had vertigo for the whole labour and it was one of the worst things Ive ever gone through.
I was so relieved when it was all over and my baby boy was here but the vertigo was awful afterwards too and I struggled to even do the basic of tasks taking care of him.
The day after the birth I noticed when I walked I felt very strange very off balance and like I was walking on a tilting surface and a severe dragging feeling in my head which was constant.
I was so thankful for my Mom and husband as I would not of got through those first few weeks without them.
I went back to the doctors weekly now and begged for another medication to try in the end they relented and offered me another drug pitzotifen which I added to the amitriptyline I was already taking.
It brings me up to the point I am at now and Ive been on the pitzotifen for 10 days at the lowest dose but have noticed some slight improvements as to where I can drive the car again and do stuff around the house.
I see a neurologist at the end of the month and Im hoping for more answers then. If I'm not much improved after the New year I've decided I will go and see Dr Sutherian who is a specialist in balance disorders and takes a particular interest in MAV. I wish there was more knowledge in balance disorders especially GPs who treat you like your making it up or just arent interested just send you off with pills that don't even work.
My family try to understand my issues but it must be hard living with someone with chronic illness I cry a lot sometimes it helps to let it out now and again. Its a hard illness to live with you never feel comfortable in your own skin even whilst lying down I feel the sensations and even have dizzy dreams where I am spinning so that wakes me up. Its tough as I feel like this time I've gone back to the beginning and trying to recover again all I can do is sit tight take the medication and pray they work so I can go back to living again! At 26 years old I don't want this to be my future constantly dizzy and worried. anxiety plays a role in this for most people over the years I've struggled with panic attacks I struggle with crowds, supermarkets and even doing the school run brings feelings of anxiety and its no way to live I just want my life back.
But as the days went by the dizziness became intolerable and I was getting very worried I started going to the doctors again but they said whilst pregnant they could do nothing for me.
I had my baby boy at home as planned but I had vertigo for the whole labour and it was one of the worst things Ive ever gone through.
I was so relieved when it was all over and my baby boy was here but the vertigo was awful afterwards too and I struggled to even do the basic of tasks taking care of him.
The day after the birth I noticed when I walked I felt very strange very off balance and like I was walking on a tilting surface and a severe dragging feeling in my head which was constant.
I was so thankful for my Mom and husband as I would not of got through those first few weeks without them.
I went back to the doctors weekly now and begged for another medication to try in the end they relented and offered me another drug pitzotifen which I added to the amitriptyline I was already taking.
It brings me up to the point I am at now and Ive been on the pitzotifen for 10 days at the lowest dose but have noticed some slight improvements as to where I can drive the car again and do stuff around the house.
I see a neurologist at the end of the month and Im hoping for more answers then. If I'm not much improved after the New year I've decided I will go and see Dr Sutherian who is a specialist in balance disorders and takes a particular interest in MAV. I wish there was more knowledge in balance disorders especially GPs who treat you like your making it up or just arent interested just send you off with pills that don't even work.
My family try to understand my issues but it must be hard living with someone with chronic illness I cry a lot sometimes it helps to let it out now and again. Its a hard illness to live with you never feel comfortable in your own skin even whilst lying down I feel the sensations and even have dizzy dreams where I am spinning so that wakes me up. Its tough as I feel like this time I've gone back to the beginning and trying to recover again all I can do is sit tight take the medication and pray they work so I can go back to living again! At 26 years old I don't want this to be my future constantly dizzy and worried. anxiety plays a role in this for most people over the years I've struggled with panic attacks I struggle with crowds, supermarkets and even doing the school run brings feelings of anxiety and its no way to live I just want my life back.
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