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11 months of dizziness and now headaches

Posted , 18 users are following.

jason61983
jason61983

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

6 likes, 179 replies

179 Replies

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  • jason61983
    jason61983

    Posted

    Thought today was a good day until I decided to make soup and clean house now my head is terrible. It is not the dizziness that bothers me so much after nearly a year but the strained head and feeling like my head is going to explode.

    I suppose I have to look at the positives. At least I was able to achieve something today. 

  • jason61983
    jason61983

    Posted

    By the way I would not recommend chopping a mountain of onions with this condition. I will buy frozen ready chopped onions in future.
    • anne05147
      anne05147 jason61983

      Posted

      What's for dinner then that you needed to chop a mountain of onions. Today is my day off work.  My eyes are wonky, can't focus, it's been coming on past few days whilst at work, but today it has worsened. I thought things were improving recently but i have come to accept that you can't expect to know from one day to the next with this condtion, so i don't expect anything now, so no longer disappointed.   May be due to lack of activity, getting up later, or just any old thing, clutching at straws. The positives for me regarding this is that it 'ain't gonna beat me'.
    • jason61983
      jason61983 anne05147

      Posted

      Well said Anne. What I keep telling myself too. I feel lucky for the life I have and at the moment I do not wish for more. I know how you feel. I try my best not to over think why I have this and the causes of my varying symtoms. They are less often but my glimpses of normality are usualy short lived. Christmas day I had 4 hours when I was thinking this condition was lifting but then it comes back with a vengence. I do hope you get some relief soon and get back to some kind of normality.

      I made carrot and corriander soup but added extra onions, black eyed beans, kidney beans, tomatoes and peppers. Hope it tastes ok! Made enough for a week or so. Finding it harder to lose weight at the moment. Think it is lack of activity and the medications I am on. Also harder to lose wight the slimmer you get. My friend is nanging me to go back to the gym but I laugh because all this dizziness started a week after I last went to the gym. I had one session and I was sick and dizzy for 2 days then all this started a week or so later. I was inactive for 3 years and had put on 7 stone. 20 mins in gym and I had had it. I am determined to make it to slimming world tonight. They all tell me how great I have done and say I must feel great lol. They are only being polite which is nice of them.

  • jason61983
    jason61983

    Posted

    Forgot to mention I have an appointment in march to receive a 2 week trial of a cpap machine for sleep apnoea and an appointment in april with a neuro-otoloist for vestibular neuritis. I am not getting my hopes up but at least I hope for professional diagnosis.
    • anne05147
      anne05147 jason61983

      Posted

      Stay positive Jason, good for you,  our attitude is key.  I am thinking of going back to my GP and asking for a neuro-otologist referral too.
    • jason61983
      jason61983 anne05147

      Posted

      Very true Anne. Upwards and onwards even if we stagger a little! 

      Waited at least 7 months to see an ENT spcailist on NHS. Finally saw ENT end of november last year.

      They said they could not detect any significant problems with my balance system with their tests and said they would refer me to someone else. I now have appointment for neuro-otologist beginning of April. I am sure you have heard that an ENT is pretty useless with regards to this condition but I would advise someone to see one as they can refer you like they did me. I have seen 2 ENT's now and even though they have been somewhat usefull they have no idea of properly diagnosing or treating vertigo and related symptoms. I would advise anyone if paying privately to see a neuro-otologist before an ENT specialist. Wish I listened to others on here but my GP would only refer me to ENT anyway. Maybe I should have argued. I will keep you informed of results of my appointment in April. Hope your feeling a little better.

    • anne05147
      anne05147 jason61983

      Posted

      Thanks Jason, do keep us updated as i would be very interested to hear how it goes for you and what treatments are on offer.

      All best wishes for your appointment.  Hope you get some action and recoverysmile

  • paula59
    paula59 jason61983

    Posted

    Hi dont forget you might need a neurologist if its silent migraine.  I see my consultant next week but theres no change on my part.  Current medication not working.  Onto the next lot I presume.  Managed to get a new job and its going OK.  I def feel better if I get up and about rather than giving in to it.  Taking myself shopping tomorrow might aswell enjoy dragging myself out.  Cant imagine one day waking up and this being gone but you live in hope.  Love and hugs to all my dizzy friends.  Paula
    • jason61983
      jason61983 paula59

      Posted

      Thanks for the info Paula. Well done on the job. Glad it's going ok. Enjoy the shopping trip today.
  • paula59
    paula59 jason61983

    Posted

    forgot to mention I take duloxetine (cymbalta) but was OK with it before this started.  They have doubled the dose in an attempt to stop this dizziness.  Also take half a sleeping tablet called zolpidem.  Tried to come off them but I just dont sleep at all.  Cant go to work on no sleep.  Gave it a go over xmas and was wide awake until gone four am every night.
    • jason61983
      jason61983 paula59

      Posted

      What dose are you on Paula. I have been on 120mg maximum dose for 4 years now but for many years I was doing very well on 30mg. If you look up cymbalta many complain of dizziness when on them and lots of people have dizziness and many of other my symptoms when withdrawling from them. Many years ago when I was on 30mg I would be a little dizzy on and off and I would be more dizzy if I forgot to take my morning dose. By early afternoon I would get dizzy and that would remind me I missed my cymbalta that morning. I have spoken with my consaltant psychiatrist about medication side effects but he just says it is vestibular neuritis and nothing to do with medication. I keep my mouth shut as they never want to admit any bad known side effects even if there is sufficent evidence and experience. If I cause a fuss and go on to them about side effects they just see you as being paranoid and mentally ill and just up you medication making things worse. Every time I have bad side effects with medication I have slowly reduced and come of that medication myself. After feeling much better for months I would then admit I had stopped medication long ago and the doctor would then agree I have been well for months on a reduced amount or off it. Then they admit it was the medication and they were well aware of the side effects.
  • paula59
    paula59 jason61983

    Posted

    Ha ! funny you should say that, I was on nortriptylene high dose but came down and actually I came off it, they think Im still on it.  It wasnt working so there was no point and it was confusing matters.  My duloxetine was 30mg but they doubled it to 60mg about a year after the dizziness started.  Ive been really bad yesterday and today but the lights where I work are bad.  I noticed I was much worse yesterday.  Today couldnt go in ASDA.  Some days I can, some days I cant.  While I was off work over christmas I took my new medication 50mg twice a day Zonisamide but the morning dose made me so ill and sick.  Its for epilepsy really.  When I started work I couldnt take it any more in the morning.  Still take 50mg at night.  Made no difference. I had lipotrim yesterday and I notice when Im on a diet my dizziness gets worse but Ive got to get this weight off from giving up dancing and ski ing.  Seeing Dr Jones on Thursday.  Cant wait to get new glasses going to have them tinted so the lights dont glare so much in the office.Thank god the dizziness stops when I sit still or lie down.  How did you find on the diet with the dizziness.  So many of us woke up one day and were dizzy and have had it ever since.  How bizarre like my friends, I had never heard of this before, and now Ive got it.  I wonder if its ever stopped for anyone ?  Sadly I lost my best friend over this, she doesnt believe there is anything wrong with me and consequently I never speak about it.  No one at my new job knows about it but Ive got this appointment on Thursday at the hospital.  Shopping went as well as it could have, got some new blouses for work before I had to give up and come home.  I remember last year I would get to the shops and turn right round and come back to bed.  Can manage to be out for about 3 hours max.  Thank god my career is over and I can work part time.  xx
    • anne05147
      anne05147 paula59

      Posted

      paula glad you're getting back to work.  Somedays i find it a struggle but overall i am adapting to trying to work with this condition. This week has been a real spinner with wonky vision and toppling about turning corners.   Reaching up to get hangers from shelves gets me in a right spin in clothes shops.  I now do my of my shopping for clothes on linesmile
    • paula59
      paula59 anne05147

      Posted

      I did that year before last, but last year was much better.  Not good enough to go back to dancing though. The thought of jiving.  OMG.  I am in bed at the minute feeling very sick from the lights in the trafford centre.  But I can tell it has improved.  I think thats partly to the fact that Im def not as anxious about it and have prob got used to the feeling.  I would still love it to go though.  There have been a couple of times on holiday when I noticed it has gone for a brief period but then it comes back in the evening when the street lights come on and I try to walk about. 
    • anne05147
      anne05147 paula59

      Posted

      i can no longer drive safely in the dark and didn't realise it's all part of vertigo until someone on here mentioned it.
    • paula59
      paula59 anne05147

      Posted

      Yep me too.  The headlights are horrendous.  I dont drive in the dark if I can help it.I wasnt sure if I had vertigo or dizziness but having had both, I realise I now have dizziness as the room isnt going round, its me thats unsteady on my feet.  I wobble about the house and bump into all sorts. Everythings too loud at the moment as well.  Hubby was crinkling a crisp packet and I had to leave the room it was so loud.  Thats not normal.  Oh joy. 
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