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dizziness, headaches, vision problems - help!

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fairlove1
fairlove1

This is my first post, I've never used a website like this before, I really feel like I need some help and advice. I have read a few discussions on here but would really like some feedback of my own.

For the past 8 months I have been suffering from dizziness, slow going at first and was manageable, but I am worried that it was a warning sign as things are getting worse.

When it first started I would get random dizzy attacks when moving my head (feel like the room around me was spinning or I was still moving when I wasnt) I went to the doctors and he explained it could be from my operation and my body getting over the anaesthetic, just a keyhole op to take appendix out. He recommended I wait and if it didn't improve within a month then to go back. I returned a month later as the symptoms hadn't improved and was put on some antibiotics to "relieve" the symptoms. When this didn't work I again returned only to be given a higher dose of them for a further month . I was then told to wait yet another month without them in the hope it would relieve the dizziness completely.

Then it started to get worse. My vision has changed and not become as clear almost a bit cloudy and I see flashing lights sometimes, I have had my eyes tested and even been to the hospital for a detailed eye examination -nothing. Then around 4 weeks ago I began getting migraines with aura and have had one a week since it started and the dizziness has become constant. I notice it really bad when I am still and concentrating and it feels as if everything around me is moving and also when I move then stand still a wave of dizziness comes over me and completely throws me off balance almost as if the ground is moving , I never fall but always feel like I am going to. I returned to the doctors last and have now been asked to get blood tests which are in 2 weeks ad have been referred to a neurologist which I have been told can take up to 8 weeks.

This week it has been extremely bad and has reduced me to tears a number of times as it really frightens me. I have had a constant headache sort of behind my eyes which feels dull and almost like there is pressure in my head, for the past 3 days and painkillers aren't helping. Every time I walk, move, or even am still the dizziness appears. It is affecting my work as I am unable to be at my computer a long time due to my vision. I was told to go back to the doctors should things get worse and plan to go tomorrow evening to out of hours. I really don't think that I can wait 8 weeks for a date to see the neurologist and feel it needs to be done sooner. I have been reading about my symptoms and have no clear steer on the possibility but I am really worried at the possibility of a brain tumor as a family member passed away of this last year.

I think it's important to note that I am 21, and generally eat well and exercise regularly (not as much as of late due to severe dizziness) At the end of last year I suffered from panic attacks, costochondritus and anxiety following the loss of a close family member. Once I went back to work January this year things improved hugely on that front. I understand that anxiety is often linked to dizziness but I am struggling to believe this has stemmed from that. I now only suffer anxiety of fear of these feelings returning.

If anyone could please shed some light on what they think this could be or if anyone is going through similar I would be so grateful.

1 like, 78 replies

78 Replies

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  • Makemebetter
    Makemebetter fairlove1

    Posted

    HI all, I'm 35 and feel like I've been reading my own notes. I've had all the visual dysfunction and 24/7 disorientation to the point of quitting my job (no one wants a dizzy dental hygienist).

    I have been to ENT, neuro, internist, acupuncture, massage etc. I'm currently taking verapamil and valium with little success. I have some fairly good hours and then several terrible days.

    They diagnosed me with vasospasm as they found ootic nerve damage with a cat scan of my eye. All other mri's and cat scans have been normal as well as my blood work.

    It's interesting to read all your info because I also lost a close family member suddenly in May. Maybe that is a common thread?

    I'm curious to know if any of you have taken your temperatures regularly? Mine seems to be elevated daily and curious if you all wee experiencing the same?

  • Makemebetter
    Makemebetter fairlove1

    Posted

    One more thing... before they found optic nerve damage, they had diagnosed me with continuous cervical migraine and vertigious syndrome just like you all.
    • brenda71967
      brenda71967 Makemebetter

      Posted

      Hello. I have been suffering from this horrible "disease" whatever it might be for 2 years now. I have everything you describe and more, all the tests you have mentioned and more and still No answers for me. Drs can't diagnose it. I am a hairdresser and let me tell you I fight thru days not to throw up on my clients.  I have had to take some days off due to it put me in bed. I have to say keep moving no matter how bad you feel, you have to fight and not give in to this. I have very few decent days and a whole lot of bad days. My sympathy to you. Please keep in touch. Prayers for all of us!!
    • Makemebetter
      Makemebetter brenda71967

      Posted

      Have you had an eye dr who has new age imaging equipment? Where they can do a CT scan of the eye?
    • Makemebetter
      Makemebetter brenda71967

      Posted

      Also, thanks to another gal on here, I cut caffeine, chocolate, and went paleo. I think without all the processed foods and sugars I've found some relief. And the valium seems to be helping, so I hate to say it, but we could be stressed to the point of physical ailments? Maybe talk to you dr about anxiety disorders? And think back to 3 months before this started, did anything happen that was stressful? Breakup, death, move? I feel it may be a common thread?
    • brenda71967
      brenda71967 Makemebetter

      Posted

      I have not had a CT scan of the eye but I have seen 3 eye doctors. I have tried Valium but I can't take it because it makes my symptoms worse and I can't function at all. My anxiety is way out of control and my vision in my left eye is blurred and double. I had a Hysterctomy and 5 months later, this horrible disease happened to me out of the blue. I have had my hormones tested and have tried to get them regulated. It is hard to do that thiugh. I don't think God intended for us women to be without our parts. 
    • lisa31160
      lisa31160 brenda71967

      Posted

      Hi Brenda, are you feeling any better? Any answrs? Have you heard of vertical heterophoria?  I have had symptoms for almost 5 months now since my last vertigo (room violently spinning) episode (I've had the 3 in the last year). since that day, I've had a daily feeling of constant woozy, dizzy (not vertigo), imbalance, swaying, feeling worse with body motion, walking, turning head, looking down (not so much looking up) but better when I can sit down or lay down. Also a feeling of my body tilting to the right when I'm in any kind of store or room with lots of visual stimulation. Also, small rooms make me feel worse. I feel dizzier when looking down and reading, even in my sleep at night with eyes closed (moments, I just turn my head and go back to sleep) I have seen a multitude of specialists, neurologist, neuro-optometrists, neuro-otologists (neuro ENT). I have had MRI and multiple vestibular (vng (w/water), vemp, vhit) tests, vestibular therapy, vision therapy to no avail. All tests normal except this last test the eCog done by my neuro otologist. He said it was abnormal, meaning fluid in my inner ear structures he called it hydrops. My hearing is perfect and I don't have horrible tinnitus, or ear fullness (I can't recall if I had those 3 symptoms during my vertigo attacks) but treating it is with a low salt <2gm diet and a diuretic. if i had any hearing loss, major/roaring tinnitus and ear fullness then it wood be called ménière's disease, which is a form of hydrops. i may have atypical meniere's since i don't have hearing loss. i just started the diuretic a few days ago so we'll see if it does anything. i'm a little skeptical because my ears havent been feeling full. another thought is vestibular migraine (bppv is ruled out since none of the test reproduce nystagmus and i don't get spinning feelings with head movement, just woozy dizzy-like feeling, i guess like a light headed feeling to the 5th degree). if after 6 weeks out his diuretic i ve not improved we may start another medication, like verapamil (calcium channel blocker) or a try cyclic like amitrytiline or nortriptuoine or an ssri (antidepressants). i have to be honest, i have become anxious and depressed from feeling this way over time which i think is a normal reaction, i ty to stay updated for my family but it's heart. i've recently taken a leave of a scene from work because my symptoms would increase while they're (lots of standing, visual stimulation, looking up and down). there are only a few optometrists in the country who have been trained on the method to diagnose this. a persons eyes can be just slightly off and cause these symptoms because the brain is trying to compensate for the discrepancy and prevent double vision, dizziness, vertigo. some patients have blurry vision and some may only have dizziness. interesting to note, some people are born with vertical heterophoria, others develop it in their 40's after a lifetime of their eyes and brains trying to prevent double vision, etc. and some develop it after head trauma. i'm in denver and i've talked with optometrists here and they say i don't have it because i don't have blurred vision, that's supposedly th hallmark symptom, but not for everyone. well, i've rambled on enough, i'm still not convinced itw my ears causing my symptoms. good luck in finding answers. has anyone  answers? thanks for reading.

      emis moderator comment: i have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. if users want this information please use the private message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages diet="" and="" a="" diuretic.="" if="" i="" had="" any="" hearing="" loss,="" major/roaring="" tinnitus="" and="" ear="" fullness="" then="" it="" wood="" be="" called="" ménière's="" disease,="" which="" is="" a="" form="" of="" hydrops.="" i="" may="" have="" atypical="" meniere's="" since="" i="" don't="" have="" hearing="" loss.="" i="" just="" started="" the="" diuretic="" a="" few="" days="" ago="" so="" we'll="" see="" if="" it="" does="" anything.="" i'm="" a="" little="" skeptical="" because="" my="" ears="" havent="" been="" feeling="" full.="" another="" thought="" is="" vestibular="" migraine="" (bppv="" is="" ruled="" out="" since="" none="" of="" the="" test="" reproduce="" nystagmus="" and="" i="" don't="" get="" spinning="" feelings="" with="" head="" movement,="" just="" woozy="" dizzy-like="" feeling,="" i="" guess="" like="" a="" light="" headed="" feeling="" to="" the="" 5th="" degree).="" if="" after="" 6="" weeks="" out="" his="" diuretic="" i="" ve="" not="" improved="" we="" may="" start="" another="" medication,="" like="" verapamil="" (calcium="" channel="" blocker)="" or="" a="" try="" cyclic="" like="" amitrytiline="" or="" nortriptuoine="" or="" an="" ssri="" (antidepressants).="" i="" have="" to="" be="" honest,="" i="" have="" become="" anxious="" and="" depressed="" from="" feeling="" this="" way="" over="" time="" which="" i="" think="" is="" a="" normal="" reaction,="" i="" ty="" to="" stay="" updated="" for="" my="" family="" but="" it's="" heart.="" i've="" recently="" taken="" a="" leave="" of="" a="" scene="" from="" work="" because="" my="" symptoms="" would="" increase="" while="" they're="" (lots="" of="" standing,="" visual="" stimulation,="" looking="" up="" and="" down).="" there="" are="" only="" a="" few="" optometrists="" in="" the="" country="" who="" have="" been="" trained="" on="" the="" method="" to="" diagnose="" this.="" a="" persons="" eyes="" can="" be="" just="" slightly="" off="" and="" cause="" these="" symptoms="" because="" the="" brain="" is="" trying="" to="" compensate="" for="" the="" discrepancy="" and="" prevent="" double="" vision,="" dizziness,="" vertigo.="" some="" patients="" have="" blurry="" vision="" and="" some="" may="" only="" have="" dizziness.="" interesting="" to="" note,="" some="" people="" are="" born="" with="" vertical="" heterophoria,="" others="" develop="" it="" in="" their="" 40's="" after="" a="" lifetime="" of="" their="" eyes="" and="" brains="" trying="" to="" prevent="" double="" vision,="" etc.="" and="" some="" develop="" it="" after="" head="" trauma. i'm="" in="" denver="" and="" i've="" talked="" with="" optometrists="" here="" and="" they="" say="" i="" don't="" have="" it="" because="" i="" don't="" have="" blurred="" vision,="" that's="" supposedly="" th="" hallmark="" symptom,="" but="" not="" for="" everyone.="" well,="" i've="" rambled="" on="" enough,="" i'm="" still="" not="" convinced="" itw="" my="" ears="" causing="" my="" symptoms.="" good="" luck="" in="" finding="" answers.="" has="" anyone=""  answers?="" thanks="" for="" reading.="" emis="" moderator="" comment:="" i="" have="" removed="" the="" link(s)="" directing="" to="" site(s)="" unsuitable="" for="" inclusion="" in="" the="" forums.="" if="" users="" want="" this="" information="" please="" use="" the="" private="" message="" service="" to="" request="" the="" details.="" [url=http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts="">

      emis moderator comment: i have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. if users want this information please use the private message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

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

  • Guest
    Guest fairlove1

    Posted

    As others have said on here, the symptoms you describe relate to Vertigo. Or BPPV. Caused by displaced crystals in your middle ear.Google it, you will see lots of information. Also refer to the Epley Manouevre. An exercise which has a high success rate or moving the crystals back to their correct position. There are lots of youtube videos that demonstrate this practice.

    Very surprised if Doctor has not mentioned this as a possible cause of your condition. Look it up, try it - and hope you gain relief.

     

  • julieta50659
    julieta50659 fairlove1

    Posted

    Thats exactly what appening to my mom am so afraid can you plese tell me a wa to stop maing her feel like that i ask her how she wasfeeling and she start ocr when she opens her eyes. She says shehas he same thigs as you posted can you please help PLEASE!!! I cant hold seeing he cry because of suffer!!
    • Olizzieo
      Olizzieo julieta50659

      Posted

      Stemetil can help with dizziness symptoms if your mum feels like the room is spinning, until the doctor can diagnose the problem. You will need to see the doctor to get a script. 
  • Olizzieo
    Olizzieo fairlove1

    Posted

    If you can find someone that does balance testing, you have much more chance of work out what part of the balance mechanism is causing your dizziness/ vertigo/ unsteadiness etc. The balance specialist (usually an audiologist) can then look at your results and guide you to a diagnosis with the help of an ENT/ neurologist/ endocrinologist etc
  • Taya21
    Taya21 fairlove1

    Posted

    Hi fairlove1.

    I am also 21 and have the same symptoms you have.

    A few months ago I was told I have a brain tumour and then I was told it's not a tumour but a cyt. I don't quite know the difference between the two but I have to spend most of my day in bed because of my symptoms and the neurologist where I live can't do anything for me. So please go for an MRI because your symptoms are exactly what I'm going through.

    I am married for 2 years and with what I'm going through now makes it difficult to be the loving newly wed bride and I can't even watch TV.

    So don't wait for 8 weeks till you see a doctor because this is very serious and like I heard can cause death.....

    Good luck with you health

    • ronnika411
      ronnika411 Taya21

      Posted

      I was just wondering how are things I been on line for months searching symptoms and reasons I really need a piece of mind I'm loosing it I don't know what else to do I've been back and fourth to Doctor no answers I've had a ct they saw nothing it's months off to see a neurologist I'm just in a bad place in life I'm 29years old and feel like my life is coming to an end I try to stay positive but how can u when u feel like this on a daily basis it's been going on since July I just don't wanna live like this
  • steve00381
    steve00381 fairlove1

    Posted

    I've been going through the same for the last 15 years,used to come and go but for the last couple years it's been constant.wad diagnosed with vertigo a few years back but the meds they gave be never helped,started seeing another doctor he thinks it's something else,just ordered a Mri on my brain,had one back in 2011 that showed nothing,good luck and if you figure this out let us know please,just sucks from the time I get up til the time I go to bed,dizzy!
    • ronnika411
      ronnika411 steve00381

      Posted

      It's a terrible feeling I'm loosing it I can't sleep eat think work I'm in bad shape I'm begging to get we'll find the problem I'm going to doctors and still no answers in just overwhelm wit the possibility of getting better I don't know what to do but I can't let this win
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