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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

    Just an update as I have not been on here for a few months now. All in all I have seen some improvement. I have 3 or more bad weeks then up to a week where my symptoms see improvement. I have headaches, head pressure and varying degrees of dizziness the weeks I am bad and less dizziness and headaches the weeks I am feeling much better. For the past month I have been on 40mg Propranolol twice daily. I can't say I have noticed any difference so far taking Propranolol but some say it may take a month or two and maybe a higher dosage to see improvement. When I am bad I find I can cope with the dizziness and headaches whilst staying at home and taking it easy but more often than not the head pressure is the biggest problem. I find that 400mg Ibuprofen and 1g of paracetemol together can ease the headaches and sometimes relieve some of the head pressure. I still suffer daily with the hyperacusis (sensitive hearing) and mild earache in both ears but these symptoms have vastly improved as regards to their severity. Yesterday the dizziness was 90% better and head pressure was minimal. I managed to get out on the bus and do some shopping in town and attend an appointment. I had a mild headache by evening (my headaches usually occur during late afternoon, early evening). Today I woke with a headache and that progressed into head pressure, dizziness and my ears are sensitive. I have had a cold for a few days but strangely the first few days of the cold my head felt much better! It gets very frustrating still as after feeling much better after 4 days or more you start to forget how ill you have been but soon after these symptoms appear with a vengeance reminding you all to clearly that this illness still has it's claws on you quickly bringing you back down. I am only too aware that I need to be more active but I am scared that doing so will make my symptoms flare up and be more frequent again. I hope people read this post and see the positives.

    I have times of improvement and feelings of positivity that one day my symptoms will improve permanently or become less frequent and lesser in severity.

    Best wishes to all

    Jason x

    • anne05147
      anne05147 jason61983

      Posted

      Hi Jason, thanks for the update.  Have you seen a neurologist.  Mine prescribed me nortriptyline for silent migraines and i am 80% improved as was experiencing visual vertigo but thought this was caused by BPPV.  The best advice the otonuerologist gave me was not to get the 2 conditions i have confused.  I thought i had only the BPPV causing all my other balance issues.  Hope you achieve some consistent improvement.  I know how disappointing it is to feel better and then feel back at square one.  I also know now that diet affects me especially too much chocolate and sugar.  Best wishes.
    • jason61983
      jason61983 anne05147

      Posted

      Hi Anne. I am so please you have seen such an improvement. You have made my day. I tried Amityptiline for only 2 days and had terrible side effects so I stopped it. The neuro-otologist (I think thats who I have seen 3 times!) was reluctant to try nortriptyline as it has similar side effects so we decided on the Propranolol.
    • anne05147
      anne05147 jason61983

      Posted

      Jason, my consultant said there is no way i should allow my gp to try to take me of nortriptyline onto amitriptyline becasue it is cheaper.  Amitriptyline has more side effects and causes more sedation.  My GP did try to take me off it saying it was much cheaper but i explained what the consultant said and he left me on what is working for me. A colleague was also on amitriptyline for migraines and said she had really bad side effects.
    • jason61983
      jason61983 anne05147

      Posted

      Thanks for the info Anne. When I reasearched both drugs online I read people were having similar side effects on either of these drugs. The neuro-otologist said they were very similar so they were reluctant to try me on Nortriptyline so we decided on the Propranolol route. On Amitryptiline 20mg I had palpitations, very high blood pressure, dry mouth and couldnt stop urinating lol. I honestly thought if I took this drug for another day I would have a heart attack. After only 2 days on Amitriptyline I discontinued use. I then had the worst headache ever for 3 days along with a week of depression. It took me 2 weeks to get back to my usual dizzy self. Don't get me wrong Amitrityline can work wonders and be a real life saver for some. I wil discuss Nortriptyline with the Neuro-otologist when I see them next.
    • jason61983
      jason61983 anne05147

      Posted

      I have replied Anne but it says it is waiting to be moderated. Don't know why as there is no bad language or links in my post.
    • anne05147
      anne05147 jason61983

      Posted

      Hi Jason, you must do what is best for you.  I initially had a dry mouth when i first started but this wore off, or i've got used to it, but i don't notice anymoresmile  I don't know of any other noticeable side effects.  The neurologist said he think i should stay on it for about another 9 months as i asked if i could stop them. He said he thinks it will take this long for my brain to heal.

      Nortriptyline is a lot, lot more expensive than amitriptyline and hence why my GP wanted to switch me.  A colleague at work was also on amitriptyline for headaches and she said it made her feel really strange and when she came off it she felt weird for a few days too.  She has also cut white sugar from her diet and no longer gets headaches.

      Best wishes.  Anne.

    • jason61983
      jason61983 anne05147

      Posted

      Thanks for the input Anne. I will certainly ask the Neuro-otologist about Nortriptyline again when I next see them. What dose are you on a day?

      I did a quick search on here today on Nortriptyline the first search were off people explaining the same side effects that I had with Amytriptyline.

      Still as you say I should not rule it out. I will give the Propranolol a few more months as I next see the specialist on the 23rd of may.

      Take care. Jason.

    • anne05147
      anne05147 jason61983

      Posted

      i'm supposed to be on 20mgs but try to get by on 10mgs because of the dry tongue thing.  I did when i first started but must be use to it by now.  I could take 20mgs but want to keep the dose as low as possible to prevent side effects whilst still achieving a benefit.  Do you have high blood pressure which could be causing your headaches, in which case propanolol maybe better for you.  I had high BP once and was on Bisoprolol (Beta Blockers) which worked really well for me, reset my BP and i came of it, but these meds should not be stopped abruptly apparently, although i did  as i thought it was starting to give me a pain in my forehead.  As soon as i stopped taking them the pain disappeared.
  • paula59
    paula59 jason61983

    Posted

    Hi Jason, nice to hear from you again.  I was doing OK but still dizzy, then exactly as you say, I got a virus thing.  At the beginning it seemed to mask this condition and then as it got on, this came back.  The virus lasted 8 weeks followed up by a full blown cold.  After the cold which has only sort of gone today, I went out and the lights in Tesco were horrendous where before I was not too bad with it. Had a really bad day and it feels like Ive gone backwards.  I expect over time it will improve again but its so annoying.  I work with the public and if someone comes in with a cold, then you just catch it.  My hearing is very sensitive and my hubby is deaf so its really painful at night when hes got the tv on very loud. 
    • jason61983
      jason61983 paula59

      Posted

      Sorry Paula I thought I had replied to you. So unpredictable these things but not as unpredictable as it was I suppose so I have to be thankfull. I can have a much better day sometimes untill I step out the front door and things suddely turn for the worse. The nateral light outside seems to effect me even the air pressure. Lights at the supermarket don't seem to effect me much if at all at times. I am glad you still manage to work as you are. You are more woman than I lol. Sorry to hear that your hearing sensitivity is still so present. Mine in general has died down but at it's worst I was in tears and thought I would become insane. My hearing was super human and I could feel sound not just hear sound. Certain sounds still effect me but not as bad as before.
  • gerald164
    gerald164 jason61983

    Posted

    Hi Jason, glad to hear from you and happy to note you seem to be getting better.  For me it has been an absolute rolla coaster, some days okayish and other days hellish.  I have tried a lot of different treatments including transtympanic injections of steriods, anti-histamines, low salt diet, VRT and now a sound generator to my right ear.  I am now on a diuretic which is supposed to relieve the inner ear aural fullness.  I have developed treatment resistant tinnitus which gets worse when combined with other external sounds.  I have developed some hearing loss particularly to the right ear.  Dizziness, vertigo, unsteadiness and imbalance have not gone away.  Have you managed to get another job?  I understand you lost yours and I am trying to find a job since I lost mine to this horrendous condition.  I was trying for early ill health retirement but NHS Pensions claims the condition is not long term or permanent although it first started back in 2010.  I think you have to be dying or have some months left to live before you qualify.  Has anyone experienced something similar?  I have appealed the case and submitted more medical evidence.  I believe NHS Pension have ignored to ask crucial questions in their assessment.  I have been searching for success stories so I can learn how others completely overcame finally but it feels like searching for a needle in a haystack.  I am glad you are doing better.  Reply back with what has worked for you.  Take care, Gerald
    • jason61983
      jason61983 gerald164

      Posted

      Hi Gerald. I am sorry that you have been suffering. You must have seen many doctors with all these issues. I have not been in full time work for a few years now due to bi-polar disorder and now these vertigo issues. I hope to get back to volunteer work if my condition improves. I know you don't wish to right yourself off but have you considered applying for PIP and ESA ?. As you have probably learnt already trying to find help with these conditions it is hit and miss. I had periods of giving up sugar, caffeine, sweetners, taking many suppliments such as vitamin B complex, B12 sublingual liquid for the fatigue, Q10 and Magnesium for the headaches, multivitamins and Omega 3 oils. At the moment I am taking a multivitamin, magnesium, omega 3 and Q10. I take them at night along with my mental health medications olanzapine and epilim chrono. I find more often than not my head is more settled during the night but these mental health drugs calm the mind and I am also sitting or lieing down all evening so that would help too. I found my headaches to be worse when I was taking pain killers everyday sometimes for head pressure when I didnt have a full blown headache. I soon learned that taking pain killers too often can cause rebound headaches and makes headaches more frequent and severe. When I first started getting headaches everyday I had headaches everyday for over 4 months. Around that time I was taking Co-Codemol. When things didnt improve I stopped the Co-Codemol and had withdrawl symptoms. I spent 3 days in bed shaking, had terrible depression and my head hurt just to breath. I think with this vertigo/migraine illeness we are much more sensitive to medication, the weather and our environment. One simple thing I am not doing enough is drinking plenty of water. When I have a very bad day with head pressure, bad headache and my ears are full with earache in both ears I take 400mg ibuprofen, 1g Paracetemol and 300mg aspirin together. I find it does take the edge off.
    • paula59
      paula59 gerald164

      Posted

      Hi Gerald, I belong on two other websites on facebook - MAV migraine associated vertigo and Vestibular Migraine Professionals.  They have been discussing disability and Im sure someone got it successfully.  Have a look on there.  For anyone who is interested there is meeting on 12 March 09.30 - 13.00 at Liverpool Medical Institute called MANAGING YOUR MIGRAINE where Dr Silver is speaking.  He is apparently the guru on all of this. 
  • jason61983
    jason61983

    Posted

    Hi all. I am still clutching at straws! I have been researching about sleep lately on and off. Mainly due to myself having sleep apnea but also due to the fatigue I suffer with every few months. Yesterday I was looking up studies on peoples sleep and rest on different firmness of mattress. Some research says that if a mattress is too soft the bodies weight will rest on our muscles instead of our bones. Resting on our muscles our muscles will not relax during sleep and the blood vessels will be dilated thus stopping our bodies from resting properly and in turn stopping our mind from entering the phases of sleep needed to get a proper nights rest. Also a mattress that is too soft will cause our spine to curve and in turn make our lungs smaller and stop us from breathing correctly. The best results were shown sleeping on a medium/firm or firm mattress. Basically studies suggest that being too comfortable using a soft mattress can stop us from getting a proper rest for our bodies, breathing and our minds. As my memory foam mattress was causing me to sweat too much at night I went out yesterday and bought a medium/firm sprung mattress. I did not feel as comfortable sleeping on the new mattress last night as it was much firmer than the old memory foam mattress. That said I did not wake as many times as usual, I did not sweat and my cpap machine reports that my sleep apnea was improved. Today I had the best day as regards to the vertigo/migraines I have had in a long while. With my symptoms up and down so often it is hard to tell what helps and what doesn't. I just thought I would share some info though it may seem a little random.
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