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Headaches for 2 years now vertigo, losing hope!

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caroline62717
caroline62717

Hi, hoping to find some advice or anyone that's had similar as I'm losing hope and can only see things getting worse :-( So.....roughly 2 years ago I suffered a standard cold that progressed to an ear infection then spread to a chest infection then back to an ear infection, various antibiotics and steroids kept it moving around until it finally went.

Since then I've had constant headaches, medication I'm taking topirimate stops the tinnitus and migraines but the throbbing of a headache is constant.

I've been for an mri and given the all clear so the doctors have said its 'stress' headaches. This week I've suddenly developed vertigo, went to the walk in centre and given yet more medication.

I've been to the doctors on a few occasions but just been brushed off with its stress! Surely everyone's life is stressful but not everyone suffers headaches which develops into vertigo!

I'm asking for help/advice from you all as although I've only had it once, vertigo scares me and I'm worried about being told to live with it as I have with my headaches! 

Sorry for the the essay but thanks in advance 

0 likes, 19 replies

19 Replies

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  • alison17886
    alison17886 caroline62717

    Posted

    Ive been told to live with it ive had constant dizziness for a year now driving me insane got no quality of life having acupuncture at the moment and it has eased a bit also taking nortriptilene im hoping it will go been admitted to hospital 5 times and had a different diagnosis all the time i really dont think they know what is wrong even paid private to see neurologist which was a waste of money this site is fab tho cos you know you aint on your own hope you get better soon i know how you feel x
    • caroline62717
      caroline62717 alison17886

      Posted

      Thanks Alison, it's so frustrating being told to live with it isn't it! It is good to know there's other people in the same boat, fingers crossed you get to the bottom of yours too!x
  • gillian76726
    gillian76726 caroline62717

    Posted

    There is condition called MAV, Migraine Associated Vertigo, but I doubt you have that due to your earlier account of infection etc.  You may have aVestibular  problem, brought on by that scenario in which case you need to see an Otologist, or better still a Neuro Otologist. Don,t mess about with Ent,s as my experience and others on here rarely seem to,have any luck,with them. Just ask you GP for a referral to the above and cut ,to,the

    chase as,they will do extensive tests and are trained in this kind of problem more specifically . It took me 4 years to,learn this!

  • gillian76726
    gillian76726 caroline62717

    Posted

    P.s MRI,s rarely show much up unless it is obvious they are,. More,to rule things out
    • caroline62717
      caroline62717 gillian76726

      Posted

      Thanks Gillian, I've never heard of those specialists before I'll definitely be asking about them I guess I need to be more assertive with the doctors, you just assume they know best but did seem to lose interest after the MRI, I suppose if it ruled out anything serious they're happy to medicate x
  • lyn88241
    lyn88241 caroline62717

    Posted

    I am on topiramate (after trying every other med going) as i ve had migraines for over 18 months now following a "virus" It seems to have reduced the number of crashing migraines i ve been getting but since xmas i was very lightheaded and tired. Stress the gp said .. not surprising as i ve been struggling to work feeling ill for a year and a half. But turns out my blood pressure and heart rate are to blame and i ve now been diagnosed with post orthostatic tachycardia (pots) which explains it all for me any way. Have been taking salt supplements and drinking 2l of water extra a day for the past 3 weeks and havent had a headache and feel better than I have done in 18 months!
    • caroline62717
      caroline62717 lyn88241

      Posted

      Thanks Lyn, I'll be googling pots in the morning! Glad you're feeling better, I'll give the salt supplements a go it'd be nice to get rid of the topirimate if I can, not sure if there's side effects for long term use but don't want to risk it x
    • lyn88241
      lyn88241 caroline62717

      Posted

      While i was waiting for the salt tabs to arrive off the internet i was so desperate to feel better i got some rehydration sachets which you can buy over the counter at any chemist (dioralyte) they are electrolyte balanced salty sachets you add to water ... I started to feel markedly better with in a day or two of taking several of these. Really simple thing to try. Cant do any harm I am sure and who knows just might help. I ve managed to reduce the topiramate down to 50mg (1 tab) now.
  • vanessa69
    vanessa69 caroline62717

    Posted

    Caroline therr is many exercises out there for vertigo of you go on u tube.but you got to kno what Verizon you have.i understand completely what your going threw cause I've been dizzy for bout 4weeks now after going threw blood work ekg etc.they said it was vertigo.i am on medicine for it which helps some.but I have been doing exercises and walking and it's helps a real lot.i would day I'm 60 percent better then I was! It will eventually go away.dont get your self upset or anything its makes it worse! Hope I gave you some advice
    • caroline62717
      caroline62717 vanessa69

      Posted

      Thanks Vanessa, glad you're feeling better and soon get to 100% I'll look for excercises as soon as I know which type it is x
  • paula59
    paula59 caroline62717

    Posted

    Hi - Ive had dizziness/vertigo now for two and half years.  It started when I came off HRT and had a bereavement at the same time.  It just came on and Ive had it ever since.  Had an MRI, seen millions of ENT, one neuro surgeon and now got two neurologists and a migraine specialist.  Had all the drugs under the sun and nothing made any difference.  I did have jumpy eyes but I had botox and that seemed to solve that one.  I get a funny creaky cracky neck from time to time, headaches, pain in my cheek and when I go in shops, I feel like my eyes are being pulled out from the front.  Its a really horrible odd sensation and is agony.  I did have trouble with my PC but that was when I was having panic attacks because of all this before the diagnosis.  Stress makes it much worse so the more relaxed you can be the better.  Which is easier said than done.  Sometimes my ears feel full and then that will go.  I find noises hurt too.  Ive been diagnosed with silent migraine or MAV.  They have now decided to put me back on HRT to see if it goes, just for three months.  We all live in hope.  I have found going back to bed doesnt really help in the long term and its best to try and keep going. 
    • caroline62717
      caroline62717 paula59

      Posted

      Thanks Paula, I get the ears feeling full too sometimes feel like they're going to burst! Hope the hrt works for you and you've been diagnosed correctly, fingers crossed for you x
  • VEDA
    VEDA caroline62717

    Posted

    Hi Caroline,

    Many people who are diagnosed with vestibular neuritis (which happens after an ear infection) get better after a few weeks, but others, like you, have ongoing symptoms. Most doctors are not familiar enough with vestibular disorders to diagnose the complicated cases. It's so important to a) educate yourself about vestibular disorders so you are an informed patient, and b) see a vestibular specialist (i.e. an otolaryngologist with specialized training in vestibular disorders). There is an excellent educational resources section at vestibular.org, as well as a provider directory. Good luck!

    • caroline62717
      caroline62717 VEDA

      Posted

      Thanks Veda will check that link out there's so much information out there it's hard to know where to start x
  • Terry6872737
    Terry6872737 caroline62717

    Posted

    Check out symptoms of Basilar migraine
    • caroline62717
      caroline62717 Terry6872737

      Posted

      Thanks terry, those migraines don't sound like mine thankfully the auras it describes sound scary x
    • Terry6872737
      Terry6872737 caroline62717

      Posted

      Only 2 of these need be present to constitute the aura according to Helpforheadaches web site:

      Aura consisting of at least two of the following fully reversible symptoms, but no motor weakness:dysarthria (impairments or clumsiness in the speaking of words due to diseases that affect the oral, lingual, or pharyngeal muscles)

      vertigo

      tinnitus

      hypacusia (impaired hearing)

      diplopia (double vision)

      visual symptoms simultaneously in both temporal and nasal fields of both eyes

      ataxia

      decreased level of consciousness

      simultaneously bilateral paresthesias (abnormal or unpleasant sensation often described as numbness or as a prickly, stinging, or burning feeling)

      At least one of the following:

      at least one aura symptom develops gradually over five or more minutes and/or different aura symptoms occur in succession over five or more minutes

      each aura symptom lasts five or more and 60 minutes or less

      headache meeting criteria Migraine without aura begins during the aura or follows aura within 60 minutes

      The throbbing seems to indicate a vascular issue such as Migrane.  Just my thoughts though as I am not a physician by any means.

    • paula59
      paula59 Terry6872737

      Posted

      Hi Terry - youre very informative its really helpful.  My aura stuff is there all day every day and sometimes the headache follows, sometimes not.  But the dizziness never goes.  Its been there two and a half years.  The docs keep giving me preventative stuff but what use is that when its already there,  I need something to stop it.  I cant believe it just appeared one day and is still here.  I live my life around it  Ibut I cant go out at night.  I wish someone could do something. Interesting that the throbbing is a vascular issue. 
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