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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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  • deemad36
    deemad36 jason61983

    Posted

    hi everyone, I can sympathise with you all, since giving birth to my daughter in 2010 I have suffered daily vertigo and dizziness and more recently horrendous migraines, 5 years of this condition has near crippled me, I spend most days in bed as walking is almost impossible..I've become depressed and more recently have started having panic attacks, I've gone from 3-4 times in the gym a week to 3-4 times in bed a week.

    My questions are did any of you notice before it all started any slight or sudden episodes of dizziness this is one symptom I remember a few years before it all seemed to really kick in, they would only last maybe a minute or 2 and then go away for a fair while.

    Today I was prescribe epilim chrono for migraines have any of you tried these and did they help with the head pain and dizziness together? Feeling quite nervous taking them as I do with any new medication any input much appreciated.

    Thanks Dee

     

    • anne05147
      anne05147 deemad36

      Posted

      Dee sorry to hear about all you've been through.  I was told by ENT that a head injury years ago probably caused my vertigo but they said i probably have always had it since then but haven't noticed it until it got this bad.  Having said that friends at work told me that i had been sayng I felt dizzy on occasions a work but i can't remember saying that but i trust they are right because it's a few friends, so maybe i just got use to the dizziness until it kicked i really bad in Sept 2013 and i found i was permanently in a spin.  Since then it has easend down so i no longer get out of bed and fall to the floor but some days, like this weekend just gone i was almost toppling over again. I think it as been worse past couple months due to nasal congestion which has also bunged up my ears but now i am on a steroid nasal spray which is easing the congestion.  Hopefully once this resolves i will feel improved but am going to retire next year as i am finding it hard to function at work some days.
    • jason61983
      jason61983 deemad36

      Posted

      How are you getting on with the epilim ? Hope you have seen some improvement regardless. What dosage epilim were you prescribed for migraines ? I have been on 1.5g epilim a day for 5 years for bi-polar.

      Had vertigo/migraines for past 19 months now. Only side effects of epilim I have noticed is hunger/weight gain and hair loss/thinning. Maybe the hair loss is me getting older. The weight gain can be hepled by a healthy diet obviously. I have managed to lose the extra weight by attending slimming world for a year and a half. There is sufficient eveidence that epilim can help with migraines. I do hope you gave them a try for a good few months and they improved your condition somewhat. I used to have dizzy days/weeks on and off for years before things got worse and became a constant battle.

      I have read that people who suffer travel sickness as children or adults are much more likely to get a balance disorder. I used to have terrible car sickness as a child and as an adult I would instantly get car sick when reading a text or map or turning around whilst being a passenger. 

      Best wishes

      Jason

       

  • Tiny2010
    Tiny2010 jason61983

    Posted

    Jason,

    I too have been experiencing dizziness with neck pain as well as migraines. I tried seeing the chiropractor, changing my diet, and even stopped working out as much..right now I am seeing a physical thearpist for my neck pain but the dizziness continues no matter what I do. Some days are worse than others and I try to just "stick it out" but its difficult and I must say its relieving to know someone else feels my "invisible" pain. This has been happening since last fall and I had to stop going out for my daily jogs because of my overpowering dizziness...really stinks. Waiting to see an ear,nose,and throat specialist and what is even worse is that is not until mid-May...

    • jason61983
      jason61983 Tiny2010

      Posted

      Sorry to hear you are experiencing similar symptoms. I do not suffer any neck pain which I am grateful for. A week or two before I became dizzy I went to the gym for the first time in years. After 20 minutes in the gym I was very sick and dizzy. I spent 40 minutes in the toilets sitting down with my head in my hands and could hardly move. I sepent the next 2 days sleeping in bed. I still wonder if me being so over weight and unfit and attending the gym is the cause of all this.

      Yes it is very frustrating waiting for an appointment when you a desperate for help. I hope you feel better sonn and your appointment this summer goes well.

    • paula59
      paula59 Tiny2010

      Posted

      I have the same and I have seen endless ENT they had no idea, I then went to neuro surgeon as have a prolapsed disc in my neck at C3.  I am now onto two neurologists.  I have had approx 8 diff medications and am giving up as they have all given me depression.  I have been diagnoses with silent migraine after having an MRI scan and blood tests but Im not convinced although I have terrible problems with lighting and PCs.  I find wearing my sunglasses helps.  The next appmt is for botox which Ive had before and it stopped my eyes jumping about.  The dizziness never stopped though.  I find it very hard to concentrate and cant remember words.  Im not sure if thats connected or Ive got something else.  Not dealing with it very well at the moment. 

       

    • jason61983
      jason61983 paula59

      Posted

      I know it can be frustating and very upsetting but please don't give up hope Paula. Some days/weeks this thing get's the better of me too.

      Hope you have some relief soon.

    • jason61983
      jason61983 paula59

      Posted

      How are you getting on Paula ?  I hope you are ok and have seen some improvement.

      Best wishes

      Jason

  • jason61983
    jason61983

    Posted

    Saw NHS ENT of Audiological Medicine today. Only asked me a couple of questions and didn't seem to be listening to my replies if he let me speak at all. He said he thinks I have uncompensated verstibular Neuritis and maybe migraines. He performed Epley maneuver and watched my eyes. Made me very dizzy and gave me no feedback on the test. Made an appointment to go back in 2 months time and said he may look into migraine medication then.

    I didn't have high expectations but I am very disapointed.

    • anne05147
      anne05147 jason61983

      Posted

      Hi Jason,  disappointing,  you go hoping they might have some answers that help.  I felt the same way too after my big build up/wait to see someone.  Keep on going though.  I don't think they have much idea myself but a lot of theories.
    • jason61983
      jason61983 anne05147

      Posted

      Thank you Anne I will carry on. We don't have much choice I know. After he mentioned tinnitus and migraines I was expecting him to refer me to someone. If he is thinking of trying migraine medication why wait 2 months till next appointment? Not feeling well at all today and feeling worse for waiting 1hr 40 mins in waiting room. No good morning no appologies for my waiting and no eye contact. I am very grumpy today sorry lol.
    • jason61983
      jason61983

      Posted

      He was going by gp's notes from 10 months ago. Syptoms, severity and frequency have significantly changed since then. He could have saved the Nhs time and money and just wrote to me confirming his thoughts on my diagnosis. Very glad I didn't go private now. Hope your having a good day Anne. I got to try and relax now for the evening before my head explodes lol.
    • anne05147
      anne05147 jason61983

      Posted

      Agree Jason,  have a rest from it all.  I've been feeling exhausted lately, so have told them today i will be leaving work next year as they say i can't reduce my hours.  I will look for a less stressful job as although i have really enjoyed my nursing after 28 years i'm a bit knackered.  Something has shifted with my tinnitus and rather than being focused, loud pitch,  in my left ear it is more around the whole of the back of my head and just buzzing and  I'm hoping my body is trying to heal itself, slowly, slowly.  I am remaining optimistic because in the early days of this vertigo problem i could hardly stand upright and am hoping i am compensating, even if really slowly it's better than not at all. 
    • jason61983
      jason61983 anne05147

      Posted

      I am sorry to hear you may have to leave your job in future. I too keep thinking there is nothing else that can go wrong and I may be conpensating be it slowly. Some days some symptoms improving other days all symptoms much worse and all come at once. Maybe there will be some positives for you in the long run I hope in changing jobs or hours. I know exactly what you mean when it comes to the feelings in your head I am sorry to say. I don't think there can be many more feeling left to be had. It is very hard to learn your limits when things keep changing so suddenly. It is so frustrating. Don't lose hope. We are not alone. There was one positive at my appoinment yesterday. I chatted to some lovely people in the waiting room with similar problems and it was great for them and I to talk to people who understand.
    • anne05147
      anne05147 jason61983

      Posted

      Thanks Jason.    I had a long chat with a chap whilst waiting in ENT too.  He has tinnitus and said it was driving him nuts,  I didn't tell him but for me the tinnitus isn't  the worst, it's the dizziness and balance problems, because for each person, it is what it is and i've had many years to adjust as best i can to the noise in my head.  For myself, who enjoyed the sound of silence it did take a good couple of years to adjust to the racket going on in my left ear/side of head, like a swarm of bees buzzing inside my head.    Today i'm feeling quite good and quite steady,  so just enjoy the good days and go with the flow.

       Happy Easter.

    • alison17886
      alison17886 anne05147

      Posted

      Plz tell me your secret in feeling good i havent had a good day in 10mths x
    • anne05147
      anne05147 alison17886

      Posted

      sorry Alison, i haven't got one, wish i knew what makes one day so different to the next then i could try and have more good days.  Each day is an unknown as whether it will be a better day or not so good.  I think i am much inproved though as to where i was 10 months ago, when i was crawling around on the floor and unable to properly balance for over a month.  That was when it was at it's worst. I haven't had this problem as long as some others on here, mine started during the night in Sept 2013, when i rolled over in bed.  It then worsened after a month until i was collapsing on the floor.  I then had to take a month off work to get to a point where i felt safe enough to drive again. I think compensation has taken me a while maybe because i am older, i really don't know whether i will ever fully compensate, or whether this condtion will get worse, but i do try and stay positive and not dwell too much on what might happen because that will only bring me down.  I hope you feel better soon.  Hang in there xx
    • jason61983
      jason61983 anne05147

      Posted

      Hi Anne. How are you getting on ? I havn't been on here for a while as I have been busy, ill or a mixture of both lol. Theres been alot of changes for me as regards to my home and personal life the past few months but things are settling down a bit now. I do hope you are well and have managed to find another job. How is the nortriptyline going ? are you still on it and if so what dose are you on ? I recently tried Amytriptyline but couldn't take the side effects. I may ask for nortriptyline next appointment with specialist.

      Best wishes

      Jason

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