11 months of dizziness and now headaches

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Hi. I have been suffering with vertigo/dizziness (mainly swaying feeling) for 11 months. The past few months my head has been very strained and tense and I have been getting headaches everyday. I can feel my whole brain in my head (mainly the top and back) and my head often pounds. Looking up my diagnosis of vestibular neuritis (VN) explains many of my symptoms of the past 11 months but I am getting used to the dizziness and fatigue but the head pain/pressure/strain is far worse than the dizziness now. The symptoms I am experiencing at the moment seem to be that of migraine associated vertigo (MAV) as the symptoms people are explaining for this seem to better explain what I have been experiencing the past few months .I wake everyday feeling dizzy and with a very strained head like my head is too small for my brain and it gets worse untill I get a headache (my whole brain aches). The past week or so the headache goes by the next day but for a while it would take two days or more to go away before returning again.

I have had a X-Ray of my neck (clear), Eye check (needed glasses for first time), CT-Scan of head (clear), Paid to see private ENT specialist (said not much he could do. Suggested as fatigue is so servere and I am a heavy snorer for me to have a sleep study. Results say I have severe obstructive sleep apnoea AHI 32), Seen an NHS Audiologist (all hearing, eye, balace tests don't show any problem with my vestibular system/balance system)

I am waiting for an NHS basic sleep study before ethey consider me for a CPAP machine for sleep apnoea. I have an appointment to have an operation to have a deviated septom corrected as I cannot breath very well through one nostril. I also have an appointment to see an ENT specialist on the NHS in April. When I see my GP soon I will ask to go on the waiting list to see an Neuro-otologist as they specialise in the brain and migraines. The past few months I have cut out  caffeine from my diet and I eat very healthily attending slimming world and I have lost 6.5 stone in 16 months. It has not been easy loosing weight when I have been ill and feeling low but I have made it my missin to loose weight since becoming dizzy. My heart goes out to anyone with this condition. It is an invisible illness and most people don't understand or believe you are unwell. Please stay postitive. My life has changed dramaitcally the past year and I am house bound most days but I have learnt to appreciate the little I can do and the great friends I have. My hope is fading that someday I will wake to find this problem has gone but at least there is some hope still within me. Take care my dizzy friends and may we all recover from this hell in 2015 x

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  • Posted

    well done for losing weight, really well done. 
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  • Posted

    Thank you anne05147. I do appreciate the kind comments I have had on my weight loss. I walk into the slimming world group every week and people say I have done so well and that I must feel great. This couldn't be further from the truth but I know loosing weight is a positive thing health wise and this is not the reason for my dizziness issues.
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    • Posted

      no, it's not the reason for your dizziness issues, the plain fact is unfortunately, that for all us who have this problem, nobody really knows the answer.  So long as i can continue to function at my current level, because when it was at its worst i couldn't even stand up, then that's a bonus for me.  Although we might not be able to find a cure i do think that i am trying to find a way to adapt as best i can because i have gone beyond hoping it will go away completely.  So when i have a good day i try to get things done and when i'm having a wobbly day i try to do things a bit more slowly.  In my experience there was a definite beginning.  Went to bed one night fine and woke with the world spinning around.  Then there was weeks and months of going to ENT and no better off, paid to see one privately who just said 'carry on as normal'.  I think the biggest challenge is trying to compensate and the brain is trying to do this all the time, for some it may come easier than for others.  I view it as something has gone wrong on my hard drive, like a computer, and i am trying to find something within myself to get my balance back on a day by day basis.  So i am just doing this one day at a time and whatever tomorrow brings is another story.  I no longer plan too far ahead because i don't know from one day to the next how i will feel.  I still manage to go to work as i thought i couldn't continue, all my colleagues are aware of my problem because sometimes they notice me walking into door frames and losing my balance, but as it stands i can cope.  It it ever comes back as bad as it was when i had to take time off work cos i couldn't stand up without clinging to the walls then i will need to review the situation.  What i have learned though is that i haven't got anything fatal, all tests have come back normal and as another poster mentioned i also thought i might have MS. I believe it is definitely related to my left ear and neck and spine.  I have a stinking cold at the moment and my left ear is squeaking whenever i blow my nose.  I also had a head injury 18 years ago which left me with neurosensory damage to my left ear, and am being told by ENT that i have probably always had this problem since that injury but not noticed it until it got this bad.  I suppose the damage was cummulative over the years. 

      Wishing us all the strength to keep on keeping on.  God Bless.

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    • Posted

      Anne the way you are dealing with this and your views are exactly the same as me. I am trying to do as much as I can and live with this but the good days where I feel 70% better are becoming fewer and further between. Today I am much worse than yesterday and it was a struggle to cook and wash but I am greatfull I could manage and I have a great sense of acheivement after doing so. At this very moment my head is getting more strained and dizzy by the hour and I know it will quickly get worse and it will take days to weeks to feel a little better. I think it's amazing that you still work with this condition. I have always thought women are much stronger than men when it comes to illness especialy.. I try my best on the worst days like today to relax and not expect much from myself but family and some friends just don't understand that I need to lie in, sleep or be left alone. It makes me feel selfish especialy in my realaionship with my son I have at weekends. He is 13 and if an adult doesn't understand my condition I certainly don't expect my son to at his age to understand. To understand this condition would be to have this condition and I wouldn't wish that on my worst ememy. I have done much less with my son over the past few months and my worry is if I get worse he will no longer enjoy spending time with me. I am doing my best to become friends with this condition and try to understand it instead of stressing myself out and making things worse. I have always had trouble with blocked sinus's especialy in my nleft nostrill which is partialy blocked due to a deviated septom. We do learn just how strong we are when faced with illness. That said we do not have an option as live goes on regardless. The only other option is not a road I wish to go down. We have to appreciate what health we do have and be glad we are alive at least. I do not ask for much from life. Just to feel well/normal again and enjoy spending quality time with my son and get out walking my dog. I can't see much getting any worse for us only beter I hope. Like they say don't pray for an easy life pray for the strenght to endure a difficult one. 
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    • Posted

      Jason, i don't think personally women deal with this any better than men but i think it is possibly harder for men because women may be more sympathetic towards one another, but then a male colleague said to me the other day as i was going a bit wobbly down a staircase, 'are you alright today mate?', which i thought was observant and kind of him.  I had to tell my colleagues at work i was having this problem because sometimes i felt it was noticeable, but really most people wouldn't know unless you told them, i was just concerned that people might think i was drunk on the job and as a nurse that would not be good.  Anyway I just tell everyone now if i am having a very dodgey day that i have a balance disorder and leave it there, because on a few occasions i have seen people looking at me in a funny way, i think it's when i am started to lose focus with my eyes and start swaying.  I have to look downwards to keep my balance.
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    • Posted

      Thanks. Yes I have explained to him. He is ok but it frustrates him sometimes. His love is unconditional as well as my jack russell's. Don't know how i'd cope without my little dog lol.
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    • Posted

      Yes women are definitely more sympathetic and understainding. I used to feel sometimes my focus was funny and felt very dizzy when at the side of road or crossing the road watching cars go past. I would feel as though I was being pulled in the opposite direction the car was travelling in. This happens less often now but then again I am not out as much.
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    • Posted

      I have bever had to hold onto the walls but I find I am more dizzy and disorientated when walking around the house in low light/darkness and I tend to bump my shoulder on door frames alot.
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    • Posted

      It's a strange feeling to explain isn't it but i seem to feel things are nearer or whizzing by me closer on the road, i feel as though my spatial awareness has been affected and i can't judge how close or far away i am sometimes in relation to another.  My vision went funny for ages as though i couldn't focus my eyes and everything just felt strange.  I hope now that i am adjusting to all this strangeness and that my brain is making the adaptions.  I find it really difficult to drive at night now unless the road is well lit because i have no visual clues.  I now avoid driving at night if i can as no longer feel safe to do so anymore.  I read on another site that this is part of vestibular problems which i found helpful, the more i know about this the condition the more it helps me, cos' then i can understand it better and work with it and make the adjustments i need to.  I need to be able to drive for my job, as a community nurse,  so in the winter when it gets dark earlier i plan my driving to visit patients for early daylight visits wherever possible.

      My husband is also good when we go to the supermarket and I feel unsteady and  say 'i've had enough of this now' as i start bumping in to people he just gets on with the shopping whilst i just dawdle about not paying attention to much of anything on the  shelves as i feel my eyes are spinning.   I can no longer just turn round, i have to do it slowly or I tip sideways.  I think all the eye movements and turning corners in the supermarkets is a trigger and reaching up and down for things.   I know when i'm tired it makes it worse.  I have also adjusted the computer resolution on my screen so that the light doesn't hurt my eyes.   I have every intention to keep trying to do the things i would normally do so that i can compensate for this dysfunction wherever possible. I am certainly losing my hearing and have to rely a lot on lip reading, the tests at ENT showed a drop in hearing in both my ears but some days i find it more difficult than others and also think the weather plays a factor but i haven't actually worked out what kind of weather cos' i have never been one who pays much attention to the weather.  I am aware that as i walk down the corridors in the hospital i can't always walk in a straight line anymore, sometimes this makes me laugh, but there we are, maybe i have a strange sense of humoursmile

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    • Posted

      Hi Anne

      Thats exactly how I am, I no longer drive at night.  Before I gave up my job I couldnt walk from the car park to work, i had to park in the road round the corner.  Walking outside is weird.  Its right how you explained it, its the spatial awareness thats not right.  I managed to wobble round the corner into work and to the office.  I was ok in the office but struggled walking round the building.  Its got better but not totally and I also put that down to my brain getting used to it.  Ive got an interview on wednesday and I hope the office lighting is OK.  I have to hide the dizziness or I wont get the job.  Im so tired after work I have to just go to bed.  I put that down to my eyes righting everything and working twice as hard to compensate.  My vision too was weird for a long while but its improved a lot.  It used to jump about but thats gone now thank god.  I can now see the PC where I did have problems before.  I dont mind the pain, its just the dizziness.  My diagnosis is silent migraine which I got from neurologist.  I do have faith in that but they still cant stop it. GPs and ENT dont know anything  I thing dizziness should be publicised as I was so scared for months and then I thought I had MS and had a panic attack. 

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    • Posted

      My vision was perfect 2 years ago and now both eyes are weeker the right eye worse than the left but maybe it is down to age (lol I am only 35). My glasses were only presrcibed for watching tv and the computer but I am now getting use to them after 4 months and I now wear them all day. I was hoping having glasses would improve my comdition but that is not the case. I do not drive but being a passenger in the car makes me very ill. My head is in peices in the car and I often have to hold my head up/together with my hands. I don't avoid going in the car as my social life would be non existant without doing so. Need to travel to appointments with GP and hospitals a few times a month. Well done on keeping up such an important job whilst suffering this. I can say my experience at the super market is not as bad as yours. I have similar but not as severe. I have a big problem with sleep. I have for years. I used to need very little sleep and would spring out of bed early morning. Now I need at least 8 hours sleep. I have tried to get to bed at a more suitable time but I end up in a worse sleeping habit. At the moment I can't sleep untill about 5 or 6am and I am not up untill early/mid afternoon. Sometimes I feel I am better if I don't sleep at all or only sleep a couple of hours. I don't wish to be in bed especially in the day but sleeping is the only time I can escape this feeling. I try my best not to nap in the evening and stay up but some days I can't bear it any longer and have a nap for an hour then I end up staying up till 7-8am before going to bed. I have my laptop screen on full brightness so I better turn it down. I feel since the begging that my problem is in my left ear. I was getting a full feeling in it and mild ear ache often. Sometimes I feel like my ear drum is rattling if someone is talking too loud on my right side. My tests with the Audiologist picked up that my left ear is weaker than my right but nothing to serious she said. I find that I am better walking with someone and talking rather than walking on my own. Maybe walking with someone distracts me from my dizziness. I am sure people think we must be drunk sometimes. I wish I was drunk because I have what I have is far worse than any hangover. I haven't had a drink in quite a few years!
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    • Posted

      I wish you good luck with the interview and hope you have a good day that day. I also went through the worry of thinking I had MS/CFS (chronic fatigue syndrome) when I first started to feel very tired all the time but the past 3 weeks my tiredness has not been as bad and is much more bearable. Sorry I can't remember if you said you have had a thyroid blood test. I have read so many posts tonight.
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    • Posted

      It is amazing how many of us have the same symptoms. I hate feeling like this everyday. I don't like to drive, even taking a shower scares me. I always feel tired but I think that is because the anxiety wears me out. I hope for all of us to feel better

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