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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

    I forgot to mention that my GP has recently admitted that my last couple of blood tests show my thyroid is a little high and I will be having another blood test soon to check again. I hear that a high thyroid can cause fatigue/tiredness.
    • jason61983
      jason61983 anne05147

      Posted

      I have not been too bad with anxiety/panick attacks. Have it a little on and off since becoming dizzy but I think my mental heath medication is keeping it at bay. I suffered on and off for years with anxiety/panick attacks so a little anxiety doesn't bother me so much. Sometimes if I am out and I have bad shakes in my hands it gets to me and people ask why am I shaking.
  • paula59
    paula59 jason61983

    Posted

    Hi Jason

    I have had the same now for over two years.  It took almost a year to get my diagnosis but was in some way a relief as I thought I had MS.  My symptoms are exactly the same as yours and it is silent migraine.  Ive had many different tablets none of which work at the moment.  However I have had botox at the migraine clinic in London which helped the headaches a lot.  Im waiting for more botox on the NHS but have to try more medication before they will let me.  I find stress makes it miles worse as you screw up your forehead which irritates the corrugator muscle which in turn irritates a nerve running thru your head, face and back of neck.  Keep a migraine diary.  I suppose I have given up on ever not being dizzy but if I keep really still, its not there and I get some relief.  As soon as i move though its back.  Its worse with lighting, PCs and noise.  I feel quite sick sometimes and unfortunately my job went full time and I had to give that up.  Im now looking for another part time job.  I dont know where you live but Im under Salford Royal Hosp who have some of the best neurologists in the UK.  Dr Zermansky runs a head ache clinic and the botox.  I hope you get yours resolved.  My social life is nil but Ive managed to get back shopping which I couldnt do at all last year.  So some improvement.  I didnt know this dizziness was so widespread. I felt really alone and lost my best friend over this.  I read dieting can trigger the dizziness.  Best wishes to a cure for us all.

  • jason61983
    jason61983

    Posted

    Hi Paula. Thanks for your reply. I am sorry to hear you have been suffering with this for so long. I know that sympathy does not help at all. I live in Cardiff. I spend way to much time on the pc since being ill and I know this does not help. I stopped doing my weekly food shop at the supermarket months ago. It was too much stress for my head. Thank god for home delivery. What medications have you tried and will be trying?. I am quite a hyperactive person and would say I am or was a stress head. I am bi-polar but have been well on medication the past few years. I have been reserching my mental heath medication and there are alot of people mith similar symptoms taking cymbalta (deloxetine) anti-depressants but mainly when they are withdrawing from it. I have tried slowly reducing my medication since becoming dizzy and spent a while off mediaction but the problems still percist and things are getting worse not better. My consultant pschyitrist thinks my medication is not the cause of my problems. I infomed him that in the begging of this dizziness I felt much better at night after taking olanzapine and epilim (sodium valproate as a mood stabaliser). I have seen that some people are given anti-depressants and even epilim to treat their migrianes. When it comes to my diet I eat more than I used to and enjoy more veriety than ever. Apart from not eating ready meals and takeaways I still eat a very varied diet.
    • paula59
      paula59 jason61983

      Posted

      Hi Jason

      Im on duloxetine which got doubled to 60 mgs and keeps me marginally sane, Ive had betahistine which used to work for vertigo, but didnt work for this, then propanolol, nortriptylene, topiramate, zonisamide, plus all the over the counter migraine stuff, nothing stopped dizziness.  I also take sleeping tab at night at zonisamide cant sleep at all.  Im building up the dose but side effects are dizziness, I dont need that, Ive got my own.  Dont know how much more of it I can stand.  Cant remember anything at all.  Apparently migraine has been around for 4000 years and theyve never know how to cure it.  I dont mind the pain, its just the unsteadyness especially at airport, supermarket.  A year ago ASDA made the back of my eyes like they were being pulled out.  I had to walk straight back out but I can go in now for short period. So thats progress. I find the airport the worst good job I dont work there anymore. This PC isnt too bad, once at work, the PC screen disappeared, I couldnt see it at all.  So I can see its improving and I was sick in the conference room with white walls and fluorescent lighting.  Ive recently got a new symptom, a funny pain/tingling in my left cheek bone. But my other symptoms move about on a minute by minute basis anyway, including all parts of my head and neck.  Its all so weird. 

  • jason61983
    jason61983

    Posted

    Yes you certainly learn who your true friends are when you are ill
  • jason61983
    jason61983

    Posted

    Just like to add I have never been sick or had nausea/feelings of wanting to be sick since having this problem.
    • anne05147
      anne05147 jason61983

      Posted

      neither have I.  Grateful for that.  Initially I was given prochloperazine to help but i think this is mostly for sickness which i don't have so stopped taking those as they were doing nothing.  Then i was given Betahistamine which did nothing either.  Then i was told to try to the MAV diet,  nothing changed.  Now i just try to do everything in moderation but i do know that looking upwards and reaching upwards really triggers off my unsteadiness and also supermarkets and airports.
    • jason61983
      jason61983 anne05147

      Posted

      I have also been on these tablets and also cinnarazine. I found none of them to help at all. I still take cinnarazine though. I am currently on an MAV diet for 3 weeks but no change also. I only get more dizzy when moving, bending and tilting my head back on days like today when I feel worse but 4-5 months ago I did not feel this way just felt off balance and swaying all the time. Always thought when I had bad few days/weeks it was probably recurrent BPPV.
    • jason61983
      jason61983 anne05147

      Posted

      I have was taking co-codemol and ibuprofen all day everyday for the headaches but since reading that taking pain killers too often with cause migraines/headaches I only take them when my head is at it's worst which is once most evenings.
    • anne05147
      anne05147 jason61983

      Posted

      i think that was in relation to paracetamol, but taking ibuprofen and NSAID which ibuprofen is also can also cause kidney damage and indigestion.  I am on naproxen for trapped nerve in neck which can apparently wreck your kidneys but i will ask my gp to check my kidney function as right now they are the best thing i can take for my pain relief as really work well for me, but also increase dizziness.  What you supposed to do?  Since i've had this cold past 2 days i've been taking Lemsip max which has helped both so have cut back on the naproxen,  but hen neck pain started niggling again tonight so took the naproxen as i need to drive and without the naproxen i can't turn my neck in the car etc., I don't like taking anymore meds than i need to and have now ordered some tumeric online as this is supposed to act as a good anti inflammatory so long as it has black pepper included to increase its efficay.  What a game, but i'll try most anything if it helps with limited side effects.
    • jason61983
      jason61983 anne05147

      Posted

      It seams you have been researching as much as me. We will know more about this condition, the vestibular system and migrains than any GP. Sorry to say we probably already do!

      I hope you get over your cold soon.

      I have been taking lanzoprazole for indigestion/heart burn for years. Couldn't live without it.

    • anne05147
      anne05147 jason61983

      Posted

      thank you, it's starting to ease up now, hopefully. It's difficult for GPs because they need to refer outside of their expertise but mine did.  I found ENT not much help really though.   The only experts in this condition are probably those with it like other conditions.   I have learnt a lot from this website & it was my GP who directed me towards it.  I have read others experiences which have helped me and in each i can see similar problems to my own and things that others have tried.  I really do believe in self help and support groups where others can share what they are going through.  I have also met others when i mention i have a balance problem who have one themself or know someone who has, so there's a lot of it about.
    • jason61983
      jason61983 anne05147

      Posted

      Glad to hear it is clearing. I agree. Again the same as me as my GP showed me this site when I first was diagnosed with vestibular neuritis and I found the ENT to be not of much use. Yes I find it does help to speak to others with similar symptoms. I first came onto here months ago but found no one with any real answers and I was trying to be positive hoping keeping active and time would help this go away. I was wrong there is some friendly people on here with some good advice/info and I hope it helps others in pushings their doctors to refer them to the right specialists instead of taking the long route like us. I have also met alot of people who have suffered or lmows of a relative or friend who has had it.
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