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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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  • gerald164
    gerald164 jason61983

    Posted

    Hi Jason, so sorry you have had this dreadful condition for so long.  I know exactly how it feels and the frustrating thing is that for others you look fine but they can't see the turbulant world we have found our selves in.  My one started in 2010 and since I have been having recurring bouts of this where I would recover, go to work but then relapse again after lots of stress and fatigue on the job. I work for a very busy NHS trust where there are lots of pressure to perform in the midst of serious cut backs in spending and increased workloads.  I know the anxieties of returning to work not fully prepared but forced to by the OT doctor employed by the trust.  You give it your best but things do get picked up that you are being slow and can potentially develop into a performance issue, thankfully it has not led to written warnings!  My advise is to continue the VRT physiotherapy exercises because it does help but it isn't a cure, in my case it offers mininal benefit until another bout occurs and you have to restart VRT.  If anyone out there knows what worked for them, what was helpful and what was not, please let us know so it can be shared within this forum.  Hope we all get back to normal soon. God bless.
    • anne05147
      anne05147 gerald164

      Posted

      Gerald, same here.  When I first took time off work as an NHS nurse aslo,  in the community, my managers first question was 'can't you retire'.  I was off work a month having tried not to take any time off for previous 7 months and struggling most days but as i need to drive when it got really bad i had to take time off cos' by then i was crawling around on the floor some days.  I know people can't see anything wrong with me outwardly but inwardly there are layers of symptoms and our consultant summed it up when i told him by saying 'that will affect you on every level'.  He was the only one who ever said something that appeared to understand how i was being affected.  I still have OK days and bad days but i do try to do things more slowly now, but as someone who use to do things rather quickly, no one seems to notice it as a performance issue as i am no slower than some of my colleagues who were working more slowly than i anywaysmile  I was told by my ENT consultant, who i eventually paid to see privately, as the waiting list was so long, 'just try and carry on as normal' and this is what i try to do because i want to adapt as best i can.  I don't hold out much hope of it ever going away now but you never know, maybe it will disappear as mysteriously as it arrived and burn itself out.  Best wishes to all that at least we can try to push through it and take rest and care of ourselves.
    • jason61983
      jason61983 gerald164

      Posted

      Hi Gerald sorry I took so long to reply. Sorry to hear that you are yet another one with similar symptops and for 5 years too. Well done for maintaining a job while suffering on and off. If I am offered VRT in April I am in two minds whether to go ahead with it or not. How often did you have to do VRT and for how long each session assuming you had VRT via the NHS. I will make sure keep everyone informed on here for sure.
  • jason61983
    jason61983

    Posted

    Sorry all. Daily moan....

    Less headaches past week or so and less severe when I get them.

    That was untill I walked the dog yesterday for 30 mins....

    I was dizzy and had a strained head yesterday morning but I felt much better than usual. I was a bit anxious about trying to get out and walk the dog but after contemplating it all morning I went out for a 30 min walk 12pm. I took is easy and walked slowly. I was dizzy and felt a bit unreal walking. Feels like my brain is on a pendulum. I have been very dizzy with strong head strain and headache ever since. After lieing down for a couple of hours I feel a little better but if I get up and do something for more than ten minutes I am very dizzy and my whole brain aches. Very frustrating as I love this time of year when it is sunny and fresh outside. I have plenty to get on with indoors but just making some food for 10-20 mins sets me back. The last time I walked the dog was 26 days ago and the same thing happened. Took a few weeks of staying in most days to see an improvement. I am beggining to think this is Vestibular Migraine and not Vestibular Neurits and I am thinking I am going to see the wrong specialist in April (Neuro-otologist). I have read that uncompensated Vestibular Neuritis over time can cause vestibular migraine. I think I should be seing a Neurologist instead. I hear that people who have VRT feel much worse and if I am this bad I do not think I wish to have VRT if they offer it to me. For the first 5 months of vertigo I was very dizzy and unstable on my feet but made sure I walked every day sometimes for upto 2 hours. It made me dizzy but I did not have headaches or such bad head strain as I do now. I wish I could remove my head and put it on a camera stabalizer when walking lol. I wish to ask my GP for a blood test to look at vitamin deficiency (B12, Folate, Iron) but they do not seem interested in further testing as they think some of my symtoms will improve when I have a trial of a cpap machine for Sleep Apnoea in March. My GP has recently told me that my thyroid has been a little low the past few blood tests. I have been fatigued and dizzy for a year and had many blood tests and the GP always reported my blood results as ok. After seeing many different doctors at my surgery at least once a month for a year now a doctor now chooses to look back at my blood test results and inform me my thyroid is a little low. My last test 2 weeks ago says my thyroid leves are improving. I had this blood test as the GP was thinking of putting me on medication for Hypothroidism and wanted to do another blood test before doing this. Hopefully now I do not need medication now I will find out on monday when I see the doctor. The quest continues.........

  • jason61983
    jason61983

    Posted

    I am begining to think I am becoming obsessed with this condition but I realise it is the other way around. This condition is obsessed with me!.  Being like this I think I have too much time on my hands.
  • paula59
    paula59 jason61983

    Posted

    Hi Jason & Anne

    Saw my neurologist and he has taken me off zonisamide as I cant tolerate it.  Going onto some new drug.  Oh joy.  I was managing quite well in my new job until a guy came in and sneezed on me and I caught his cold.  Ive had it a week and it has floored me this weekend.  I had to give in and go to bed yesterday and by last night, I was so dizzy I was convinced I would die overnight and today in the postmortem they would finally find out what it is.  Anyway after being sick and in agony with stomach I fell asleep and I woke up today (obviously).  I think lying down all day made me worse.  I dont know why but Ive noticed if I give in to it, it gets worse.  I am dragging myself round and trying to do bits.  I am dizzy all the time when moving but it goes when I stop, well yesterday it was there all the time when I was stopped.  Hence so sick.  My neck, jaw, cheeks and forehead feel creaky and cracky and buzzy.  So hard to explain.  Top of head has pins and needles.  Hair hurts.  Ive managed to only have 3 days off in 2 1/2 years so will def drag myself in tomorrow.   I think work can take your mind off it slightly.  I too have decided this thing will stay for life so have to live with it unless one day it just isnt there.  Cant believe one day it wasnt there and the next day it just came.  It is hell, its some form of torture.  I try to tell my hubby its like being on a roundabout that no one will let you get off.  I hope it eases back to where it was when the cold goes.  I suppose you get a cold in your head so its bound to do something.  Neurologist stil sticks by silent migraine. 

    • jason61983
      jason61983 paula59

      Posted

      Sorry to hear your trialling yet another drug from the pushers. Do stick with it as some drugs work for some and not others. My fathers got a bad cold so I am staying well away. I definately know that scary feeling I too have thought I might die a few nights lately. Some days I am better moving about a little and getting on with things but some weeks I cannot stand upright for more and 10 minutes before things get worse. Some unexplainable feelings in my head and left ear more often now too. I hope there is an after life as I would love to be at my post mortem lol. Don't give in to this you are coping well beleive me.
    • anne05147
      anne05147 paula59

      Posted

      sorry you got the cold.  We've had it for months where i work.  I've had it for the past 6 weeks, someone told me their doctor told them it can last 16 weeks, sorry this isn't meant to make you feel more miserable.  I keep thinking the cold is on the mend then it's back the next day.  Last night i took an antihistamine in case it's no longer a cold but an allergy.  Today i felt all spaced out again ? the antihistamine.  I really think you ought to slow down with this cold malarkey.  I didn't but maybe that's why it's still dragging on, but i certainly agree that the less i do the worse i feel.  If i didn't have a job i think i might be worse off cos at least at work i can manage so far but on my weekends off when i have a lie in i always end up feeling more dizzy, wobbly, spaced out or hower to describe the layers of this condition.  My husband tends to forget i have vertigo unless i remind him that i have this every day and i don't want to keep moaning on about it, but feel he needs to understand that just because i don't mention it doesn't mean it's gone.
    • paula59
      paula59 anne05147

      Posted

      Cold much better today but given it to a colleague.  She isnt dizzy though so its just a cold.  I cant believe how much worse the dizziness was over the weekend cos I stayed in bed.  Must be something to do with irritating the back of your head, the old corrugator muscle again and the sodding nerve underneath.  Will have to send email to both neurologists tomoz while they decide which drugs Im going with. After that its the botox.  Yaaay !  Do you live in the north ?  Ive got my next appmt with the headache neurologist in april so not long to wait.  He might cancel the drugs and just go with the botox who knows.  Been a stressful day at work so head a bit worse this afternoon,  I can def feel the difference when Im stressed.  My new boss told me about his last temp who was wearing sunglasses with the light off in the office, he thought it was funny.  I didnt, he didnt know what he had said.  Good on her to brave going to work she was obviously really suffering.  He went down in my estimation and has been going further down ever since.  I think Im on the verge of leaving.
    • anne05147
      anne05147 paula59

      Posted

      Hi Paula, sorry to hear you are on the verge of leaving but understand.  When i took time of sick with this vertigo my manager just said 'can't you retire?', she was totally disinterested.  My more senior manager however told me to take whatever time i needed and was much more supportive.  There was no concern that i was struggling and had managed not to take the previous 7 months off since all this kicked off one night when i went to bed OK and woke up with the world spinning.

      Thankfully i managed to get back to work after 4 weeks off but i really thought my job was finished.  My cold has now gone into my sinus but hopefully will eventually go.  We have air con in our office which affects it.  I started back on my pain relief today as my neck/shoulder pain is returning, i was trying to get off the meds as really don't like taking any meds except as a last resort. I would rather just have the botox without trying their different meds but i suppose you have to play along to get the treatment.  Hopefully the meds might work.  Did you tell your boss you have vertigo?  I had to tell mine because my job as a community nurse involves driving and when i went off sick it was because i felt too unsafe to drive.  I have made an appt today to see my GP and see if i can get a referral to neuro otology and also have my B12 checked. Apparently the best way not to frown is to keep smiling.  Keep smilingsmile  this too shall pass. 

    • paula59
      paula59 anne05147

      Posted

      Yep have to play along.  I havent told my boss about the migraine, hes a wierd one.  Im his sixth temp.  Feel like anne boleyn.  He micro manages and has pulled me up every day for the past four weeks Ive been there over something ridiculous.  Ive been a PA for over forty years.  He has a problem, he acts like a six year old.  Luckily he isnt based in the same location as me and the other half of my job working for someone else I really love.  I have mentioned it to him but not the dizziness.  He thinks I just take anti migraine tablets.  I had to explain why I had a hosp appointment.  I had to leave my last job as it went full time and I cant manage full time with this.  Four days is enough.  Im so tired thats all I can manage.  The housework doesnt get done though as Im so wiped out.
  • jason61983
    jason61983

    Posted

    Really bad day today. Been trying to keep busy. Woke this morning with a very strained head and it has got worse by the hour. Very strong head strain and heavy head, very dizzy and a little sick. I don't often feel sick with this it only happens when I am at my worst and is short lived. GP this morning said how good I looked lol. Ordered a load of vitamins this weekend. B12 sublingual 1000mg liquid, folic acid, iron. Magnesium glycinate and Q10. I am already taking multi vitamins, vitamin C, vitamin D3 and Omega 3 fish oil. Not getting my hopes up but anythings worth a try at the moment. Keep thinking I may be going insane and all this in my head but then reality hits me and I realise this thing is in my head. That's the problem.
  • jason61983
    jason61983

    Posted

    Just some observations on past few months. Noticed that every few weeks  I have a couple hours where I feel much better (still dizzy and slight head pain, left ear sensitive, fatigue). After the brief period of feeling some relief I get worse than ever. Calm before the storm!!! My symptoms the past few months have been more and more unpredictable and and can change at the drop of a hat. Last night after lying down most of the day I was feeling much better and positive with no headache for 4 hours. Woke today extremely dizzy and heavy headed with the worst headache in weeks. Took 2 Co-Codemol and Ibuprofen (crushed co-codemol and dissolved in water) and drank large caffeinated coffee (first real coffee in months). Also took all my many Vitamins, Omega 3 and B12 liquid. Struggled to do dishes, hoover, tidy up and shower. I expected to get worse and be incapacitated for the rest of the day. 1 hour after still dizzy but headache gone, head strain much better, less fatigued. Scared to admit feeling some relief as the relief is usually short lived. Not complaining as any relief is great and It's a lovely day outside today. I won't push my luck and go out but nice to have the windows open and get some light and fresh air. Hope some of you have glimpses of some normality too. We live in hope my dizzy friends x 
    • paula59
      paula59 jason61983

      Posted

      Hi Jason - dont know why - maybe because I didnt lie in, had to get car to garage, but I was up early on my day off and Im having a good head day too.  Sun is shining and its lovely.  Can turn my head easily without the creaking and cracking and feel pretty good. Still slightly dizzy when I move my eyes but all in all a good day. Bit dizzy when I move my head up and down but side to side much better. 
    • jason61983
      jason61983 paula59

      Posted

      Glad to hear you had a better morning today Paula.  Mine was short lived yesterday but can't complain. Equilibrium completely out of whack today. Strange isn't it. I get much dizzier tilting head to side or tilting head back. Right now if I tilt my head back the pressure, strain and swaying in my head is unbearable. Maybe I should stop doing it! rolleyes

      Just stood on one leg with eyes closed and head tilted back. I wouldn't recommend trying this. It was horrendous and my head was spinning not just swaying. The morning I saw specialist and did balance tests was the least dizziest I had felt in months. Still can't wait for a proper diagnosis. I still find it very hard to believe that a nerve in the head can cause so much discomfort and upset for this long.

    • anne05147
      anne05147 jason61983

      Posted

      Hi Jason

      what nerve in your head is this? 

      I have often felt that there is some nerve at the back of my head that is tender.  I caught it with the brush one and it sent a sharp pain up the back of my skull, wondered if it is the same one.

      Anne.

    • paula59
      paula59 anne05147

      Posted

      Hi Anne - its the trigeminal nerve with the corrugator muscle over the top if its the back of the head.  Unless you are referring to the one thats involved with the SCM muscle.
    • jason61983
      jason61983 anne05147

      Posted

      Could be the greater occipital nerve at the top or the lesser occipital nerve at the bottom
    • anne05147
      anne05147 jason61983

      Posted

      Hi Jason/Paula - thanks

      I'm referring to what you said Jason

        'I still find it very hard to believe that a nerve in the head can cause so much discomfort and upset for this long'

      and i was wondering what nerve you were referring to.  Thanks for the link.

      Hope you're moving forwards now you'v seen he specialist.

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