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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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  • Munchkin11
    Munchkin11 jason61983

    Posted

    Dont know if this may help but I have had a couple of bouts of severe Vestibular neuritis in the past which meant doing exercises to "retrain my brain". I had test which showed there was some damage to my left ear as when water was sprayed into my left ear I did not experience spinning as I should but did when water was sprayed into my right ear. Only exercises over several weeks improved the condition. Stress certainly can bring the dizziness on. With regards to headaches I have found seeing a chiropractor/sports massage therapist helps a lot as it releases all the tension in my muscles in my neck and shoulders and in my case this has made the most difference.Don't know if this will help you but it has made a world of difference to me. Good luck
    • jason61983
      jason61983 Munchkin11

      Posted

      Many thanks for your input. These are all things on I have researched and have on my todo list. I am sure you have first hand experience of how difficult it is to seek help/therapy whilst feeling this way and GP's being so reluctant to refer you for assessment and treatment. I contacted a few chiropractors months ago but never followed it up.

      I was given a list of exercises to do by the neuro-otologist but even on a good day they can make me very bad and that's only doing the first few exercises. I am more active recently than I have been for a few years and I am hoping that this will aid conpensation. Today things have got the better of me and along with the dizziness and fatigue I now have earache in both ears.

      Best wishes to you too.

  • hyien
    hyien jason61983

    Posted

    Hi,

    Any updates on your condititon/diagnosis?

    I've been experiencing similar symptoms for the past 5 months.

    Constant dizziness, floating sensation and I'm easily tired.

    It's really wrecking my life.

    Cheers.

    • jason61983
      jason61983 hyien

      Posted

      Sorry to here you are suffering. I hope your symptoms are improving.

      My most recent diagnosis is uncompensated vestibular dysfunction and possible migraines. I have recently tried Amitriptyline 10mg but I had bad side effects and after only 2 days on it I had to discontinue.

  • jason61983
    jason61983

    Posted

    Hi all. How is everyone doing ?

    My outlook has dropped. I am losing all hope in getting better right now. I was generally keeping positive about this vertigo/migraines or whatever you choose to call it. The past 6 weeks things have been going from bad to worse. The headaches have come back and are now occurring daily again. Not always a full blown headache but there is always a slight dull pulsating pain in my head with a full blown headache a few days a week. Dizziness, fatigue, ear pressure, sensitive hearing and poor concentration amongst other symptoms are constant. A couple of weeks ago I saw the neuro-otologist again and I agreed to give Amitriptyline a try. 10mg a day for 2 weeks then 20mg. I lasted 2 days on it. Sheer hell. For 4 days my heart was pounding, I had dry mouth, and couldn't stop urinating. My blood pressure was between 132/83 and 160/89. A day or two after stopping Amitriptyline and the side effects subsiding then came a severe drop in mood and motivation feeling brain dead along with a few days headache the worst I have had in months. Almost 2 weeks now since taking Amitryptiline and the side effects are well gone but I constantly feel awful but in a different way than before if that makes any sense at all. My mood is ok now but my concentration is very poor and the general disequilibrium is driving me up the wall. At the moment a walk outside gives me a headache and a car journey turns my head upside down. Being in public is too much for my senses. I hope this is just another phase and this all passes soon. I was determined to endure a good few weeks trial on Amitriptyline no matter what the side effects but after only two days I simply could not take another minute on it. I have read so many positive experiences of Amitriptyline and so many people have found it to be life changing. Please don't discount this drug when seeking relief. It seems that many have mild side effects that go away after a few weeks. I am just one of the unlucky ones that had more severe side effects. Maybe it did not agree with the other medications I am taking. My pharmacist assured me it was ok to take along with my other medications but a quick google search reveals that Amitriptyline has a warning when taken with other types of antidepressants especially Cymbalta that I take.

    At the moment I have forgotten most of what I have learnt on here and researched on the Internet. Anyone have any suggestions on medications I can try next ? I see the specialist again in January.

    Thank you and best wishes to all

    • anne05147
      anne05147 jason61983

      Posted

      Hi Jason, typed you a longer reply and it disappeared, but basically wanted to say maybe being on 2 types of antidepressant caused a toxic reaction or interacted badly with some other medication you're on.  Hope you feel better soon.  It's like to trying to find a needle in a haystack trying to get to the bottom of what is causing this problem. I was doing well on Nortriptyline 10mgs for silent migraines causing vertgio but now find i am having symptoms again and that it may be worsening my tinnitus.  I am due to go back and see the neurologist in October and in the meantime am trying to keep tabs on my diet and not have so much sugar.
    • jason61983
      jason61983 anne05147

      Posted

      Thank you Anne. Such a low dose of Amitriptyline but I thought I was going to have a heart attack. Think I am sensitive to medication as I feel unwell already and agree that it probably didn't go down well with the other meds I am taking. Yes trying to find a needle in a haystack for sure. The fact that there are so many people with similar symptoms and many suffering much longer than we have and having seen many more doctors certifies that there is no quick fix or magic pill for many of us. That said we mustn't give up or lose hope in learning to manage this condition and find relief. With so many symptoms up and down It is very hard to know what is caused by the vertigo/migraines and what is caused /helped by the medication. I am very glad the world carries on regardless but sometimes wish I could put the world on pause while I take time out to recover. My ears too bother me everyday. I sometimes think I am super human my senses are so sensitive to sound and my surroundings. I have given up tracking my diet and cutting things out. I tend to eat healthily and in moderation. I don't drink alcohol. I do know all along that I need to drink more water. Hope things improve for you soon Anne. Best of luck with appointment October. Keep us posted.

      Take care

      ​Jason

    • anne05147
      anne05147 jason61983

      Posted

      Hi Jason  i know what you mean about sensitive to sound.  At work i sit next to someone who wears numerous bangles on her arm which grate on my ears everytime they jangle and clang against the desk.  I think i am probably stuck with this condition coming and going.  If it goes away it will be a bonus but i'm not going to waste my time on it like some kind of career as i would rather take it in my stride and enjoy any good days without thinking 'it's gone'.  It's 2 years now and i'm no further on despite ENT, meds, oto neurologists, changes to diet, giving up smoking, giving up caffeine, giving up sugar, chocolate, cheese, dairy or whatever else is on the list of clutching at straws.  I'm going to just try, like yourself and just do everything in moderation.  I haven't drunk alcohol for years, so that's not a problem, i'm glad i gave up smoling, i think, maybe,  the answer lies in drinking lots and lots of water to dilute everythingsmile  Get back to you after my next appointment though and then for me I will probably wind up on seeing anymore specialists and just stick with this one for a while.
    • paula59
      paula59 anne05147

      Posted

      Hi anne - OMG my ears hurt just thinking about the bangles.  My hubby sometimes eats crisps in bed next to me and the bag and the crisps sound so loud they do actually hurt my ears.  He thinks Im bonkers.  But then he did just say why dont you stop obsessing with it and you wont notice it so much (?) - its chicken and egg, being dizzy all the time you can never forget so desp look for cures just like all my dizzy pals. 
    • paula59
      paula59 jason61983

      Posted

      Hi Jason I found nortriptylene was good, didnt get rid of the dizzies but it calmed me down and I think that in turn helped a lot.  Im much better this year than last.  Not on anything now, nothing got rid of it and some had very bad side effects.Have resigned myself that after three years, Im going to have to live with it and so am now trying to actually do that.
    • anne05147
      anne05147 paula59

      Posted

      Hi Paula, i feel the same way too, just going to get on with it and hope it doesn't get any worse, at the moment it's manageable and not like when it was at it's worst and i was crawling around on the floor, so maybe it's levelled out.  You'll have to put some cotton wool in your ears for the crisp chomper. 
  • paula59
    paula59 jason61983

    Posted

    Hi Jason - waiting to see orthopaedic consultant on monday to see if my neck is causing any of this stuff.  Im trying not to get my hopes up as I probably wont get anywhere at all.  Actually Ive joined facebook migraine page and Ive got all the same symptoms as everyone else on there so Im thinking maybe silent migraine is correct after all.  Never mind will be interesting to see what he says. 
    • Soooze40
      Soooze40 paula59

      Posted

      Hi Paula59. Did you get anywhere with the orthopaedic consultant? I've been having the same issues as you, 5 months now.  I'm also up north. Just started nortriptyline as ent consultant said i probably have vestibular migraine.  I'm dizzy every day, whenever I move about. Shops, crowds, artificial light makes it worse.  I'm not agoraphobic, I used to love shopping, but am starting to dread it now though, cause of my symptoms. Now it's mainly dizziness behind my eyes, and between them.  Eyes just feel weird, you know?
    • paula59
      paula59 Soooze40

      Posted

      Hi Soooze - yes when I went to ortho cons he said I had facet joint syndrome in my neck and Im on the list for injections.  No connection to dizziness really.  Go on facebook to MAV (migraine associated vertigo) we are all dizzy on there. Ive started botox.  Due second lot.  Ive also pushed myself to keep shopping etc and my now dizziness is much better in the day, unless I go to ASDA or somewhere, then I just have to stomach it, but I start to get dizzy at tea time.  Which is better.  But not cured.  Theres another site Im on on facebook, vestibular migraine.  Both sites very good and you will see you are one of very many.  My symptoms have improved but its now 3 1/2 years.  Theres also a lecture coming up in liverpool if you are interested. 
    • Soooze40
      Soooze40 paula59

      Posted

      Thanks for replying Paula.  I'm not on Facebook, but might join up just to have a read of the pages you suggest.  Did you just go and get botox yourself, or did you get referred?  I googled quickly earlier, and saw that botox sometimes MAKES people feel dizzy!  Lord knows, I don't need any more of that!  I also read one of your earlier posts, that the botox helped with your eyes, but didn't do so much for the dizziness.  Please can you tell me a little more?  Did you have it injected into your forehead, directly between the eyes?  I still work, go shopping etc but its not the same anymore.  I don't want to keep going on about it to my family, firstly because they would worry, but then like me, they would be angry because it feels like docs are just guessing and nothing really works.  Unlike you, I seem to get better in the evening, think its because thats when I'm more still and not moving around.  This morning I was cleaning the house and felt totally out of it, drunk almost by the time I was finished.  Also, please let me know the details of the upcoming lecture in Liverpool.  Looking forward to your reply.
    • paula59
      paula59 Soooze40

      Posted

      Hi Soooze - just typed you a huge reply but its disappeared in the ether.  Probably best sending me an email on [email removed].  I can then answer all your questions any time you want.  I dont know why I lost the war and peace answer I had just done.  How sodding annoying. When I first got this, I suspected migraine so I paid privately to go to the migraine clinic in harley street in london.  I paid £300 for 4 injections in one side. Disaster I had mismatched eyebrows.  However it did stop my eyes from jumping when I was driving.  After that I saw endless ENT, one neuro surgeon and two neurologists.  He said it was silent migraine.  I was relieved because I thought I had MS.  I then had to try medication before botox.  You have to have tried 3 diff lots for 3 months before you get passed to botox.  I ended up with 9 lots and couldnt tolerate any of them.  Topiramate made me suicidal.  Beta blockers scared me as they made my heart feel funny.  Nortriptylene was good and made me relax but didnt get rid of the dizzies.  Last Dec I had the first NHS botox.  31 injections across your hairline then down the sides passed the soggy bits above your ears and around the back of your head.  They were all OK apart from the soggy bits which were weird.  Not painful.  Maybe a bit sore just that day. I felt brighter and like my head was lifted and felt better.  It def didnt make me any more dizzy than I already was but it has lessened the actual painful headache migraines.  But they dont bother me.  I would swop splitting headaches for dizziness anyday.  Ive carried on at work and shopping and things have improved.  If I lie on my bed or sit still in a chair Im fine, but if I get up to move then Im dizzy.  This happens every evening but not in the day.  Bizarre dont understand it.  I did go on a cruise in Dec and was smashing on the ship, but night time when I came to lie down on the bed wich was bouncing about, gave me actual vertigo and I was sick.  I had no sleep for two weeks.Send me an email and I will give you the details for the Liverpool thing.  Join facebook MAV and Vestibular Migraines pages they are invaluable.  We all live in this dizzy world of ours and chat about it all the time.  Were all there for each other.  You would be very welcome.  There are some knowledgeable people on there and you get brilliant replies and silly and funny replies.  You can have a moan if you want aswell.Looking forward to getting your email.  Hugs 

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • paula59
      paula59 Soooze40

      Posted

      Soooze  if my reply doesnt get past being moderated, I will send you a private message with the details of Livrpool on.  Where in the north west do you live.  I belong to salford royal hospital in eccles under dr zermansky. Just waiting to see what happens with my other giant message to you.
    • Soooze40
      Soooze40 paula59

      Posted

       Thanks for your reply Paula. I did send a short email to you before I'd seen your message on here! Never mind! I will email again later when I've got more time.  It's lovely to be in contact with someone who really knows what it's like.  Ignore my first email, I was asking you questions which you've already answered on here. Thanks so much, xxx
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