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Just can't seem to cope

Posted , 14 users are following.

emma93780
emma93780

I've posted in here a few times and met some wonderful people with great words of advice however I'm still really suffering!

I don't know what to do or where to go anymore as I've had quite a few tests some that have come back normal and some that have not, I've had ct scans which are normal but never had an Mri, I have been having dizziness for about 6 months now with not very much let up or break, I have tried numerous things to try and improve it and nothing works.

I'm getting myself so worked up about it as I have 2 young children to look after and need there mum to be well, I have been to the doctors to many times to count and they don't know what is wrong with me I'm sure they think it's not as bad as it is but honestly it is, it's getting to the point where I can hardly stand up for long periods of time and I am having to walk holding on to walls etc, I even feel dizzy when I'm sitting down, yesterday I felt as if the blood was draining from my head to my feet and went all lightheaded luckily I was sat down at the time as I think I may have fallen otherwise.

I don't know where else to turn all I know is I just want to sit and cry it's that bad. Xx

1 like, 41 replies

41 Replies

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  • Mary_McAvoy
    Mary_McAvoy emma93780

    Posted

    Hi Emma. Jan and Gillian are right. A regular ENT isn't necessarily the specialist you need. They often stop at the first sign of it being difficult to diagnose. A good balance clinic that tests more than your ENT can be the answer. My physical therapist saved my life. It's an ongoing process and I am not done, but I am improving a little bit all the time. Before that I  had to take Valium every day just to function. Hang in there. I also wish I could give you a hug. No one can understand what we go through if they haven't gone through it themselves. We'll be here for you. 
  • Bestie711
    Bestie711 emma93780

    Posted

    Emma, hugs to you first of all. Apart from some of the great advice you've seen here, I also suggest that you do your own research on the Internet. As you research (and I know it's a pain in the bum), you will find that there are some things you can strongly identify with and others that you may wish to ignore. When you find something that makes you go, "wow, that sounds a lot like what I have", take notes. Write the condition down, what kind of doctor specializes in it and perhaps bookmark it so you can return. This will help you to narrow down who you need to see. 

    In my time, I have seen LOADS of doctors and some of them were uncaring, said belittling things and some just didn't have a clue, or did not believe me. One big-time surgeon here said, "hey, it's not so bad to feel what you're feeling once in a while". He made it sound like he was trying to be cool with me and that he did recreational drugs in his teens. I never forgot that. I hated the feeling which I had ALL the time. It could not be turned off. I'll never forget the doctor / prick.

    So, arm yourself with good info, then tell your GP to get you referrals to the right doctors. Not all doctors are good. I've seen some that left me thinking, "how the hell did you pass the exam? He must have cheated".

    Unfortunately, the initial stages means you'll have to go through lots of tests to rule out the dangerous stuff. Then you can zone in. You cannot expect doctors to give you proper advice if it's not their "thing", so you do your research and arm yourself, then go marching on!!

    As for an MRI, it was horrible for me too. Ask questions. I had my dad come in with me and occasionally stroke my foot to let me know he was there. See if you can get someone to "help you through" it. I know it's hard and I don't think I will ever go through another MRI myself!!. 

    Be strong. You can do it.

  • debbie82116
    debbie82116 emma93780

    Posted

    Hi Emma

    I wanted to add my two cents to these conversations.....first of all, hugs to everyone suffering with this nasty illness. Its like no other...and unless you've experienced it, you have no idea.

    It really sounds like you have labyrinthitis and/or vestibular neuritis. It is usually caused by a virus that damages the balance nerve. Once the damage is done, it is not reversible...HOWEVER your brain can learn to compensate so that you can function normally again.

    I had laybrinthitis in 2008...it lasted 2 years. It DID GO AWAY. I was fine for 5 years and it came back again but this time only for 4 months. I have been told it can rear its ugly head again and again especially during a stressful time or an illness that weakens the immune system.

    I UNDERSTAND how much anxiety this illness causes. I saw a therapist to learn coping techniques, i saw a rehab specialist who gave me exercises to do to retain my brain, i took anxiety meds, i saw a chiropractor for the neck pain and i took help from anyone who offered it...family members and friends.

    I cried every day and I was a different person. BUT IT DOES GO AWAY.

    I had every test under the sun, saw all kinds of doctors and felt alone and frustrated.

    I am still taking a very weak dose of anti depressants to stave off anxiety. I am living a normal life now but i know it can come back. See a vestibular rehab specialist and do the exercises you are given. They make you dizzy but eventually your brain will learn to compensate for the mixed signals it is receiving from your good and bad ears.

    Take extra vitamins to boost your immune system and dont be afraid to try something for the anxiety. You WILL overcome this!! Take care of YOU!

    Hugs

    Debbie xx

    • emma93780
      emma93780 debbie82116

      Posted

      Thanks Debbie it's good to hear from someone who has recovered be it temporary and to shed some light on things, I just feel like I'm at a loose end and I've just been told it could be this it could be that etc with no definitive answer, I can't eat I feel sick with worry, I've got a banging headache and pressure in my head (I know it's probably stress) I've been told it's not this its not that etc so what is it?!? I've just got it into my head that it's the worse for some reason and I don't know why, I've had ct scans but then goggle stuff and ta dah all sorts comes up saying ct scans don't pick up brain tumours or only large ones which has freaked me out, I'm so p*ssed off (excuse the language) with feeling this way, if they told me for sure your heads ok it's your ear I think I would cope better but because they don't know what it is I'm stressing and googling trying to find out and in the meantime diagnosing myself with every incurable illness possible 😞 Xx
  • rocksolid
    rocksolid emma93780

    Posted

    I am on these boards a lot and I am going to give the same advice. Look up verticle Heterphoria, it's an eye condition. You average eye doctor can not check for this. ALso....do you still have your widom teeth? There is a board where people talk about have the same problems as us ( I have been spaced out for over 4 yrs non stop ) Once they took theor wisdom teeth out they felt better. I am going to have mine removed today.
  • rockymama
    rockymama emma93780

    Posted

    I saw your post and I definitely understand how you feel. I was diagnosed with idiopathic mal de debarquement (wasn't on a cruise or anything) about a year ago after being dizzy since July 2014. I still have dizziness (rocking on a boat feeling 24/7) but it's better. I think exercise is very helpful. Walking, running. I take amitriptyline which also helps. I take the lowest dose of Effexor. When I'm really feeling bad or if I need to travel I take a low dose of Klonopin. The illness is supposed to be self limiting meaning it will eventually go away but in some people that doesn't happen. I blame hormones. Some seem to feel better when they go into menopause. I would encourage you to exercise and try some of these hints. Remain active as it will help your brain sort things out. You will prbly feel worse at first but it will get better. Stay positive. Anxiety only makes it worse. I pray you feel better soon. As a mom of two kids myself I can empathize.
    • Gilly_flower
      Gilly_flower rockymama

      Posted

      Are you taking amitriptyline for the dizziness or for the anxiety this horrible illness causes , do you take it morning or night , I have been prescribe it just for night ,
    • rockymama
      rockymama Gilly_flower

      Posted

      It seems to help my dizziness. I originally got it for headaches but read that it can help w rocking dizziness and it does. Effexor has helped anxiety. Exercise has definitely helped as well.
    • Gilly_flower
      Gilly_flower rockymama

      Posted

      hi , thank you for replying , do you take it just at night , I'm trying to keep as active as I can , and hope the exsersises will help , but such a slow job , when I move around it's like everything around me is going to fast , my eyes feel so bad with this , strange feeling , I have had  them checked , nothing sinister going on , X 
  • david_inNC
    david_inNC emma93780

    Posted

    Hi Emma,  This is an very hard condition to deal with and I sympathize...it will get better.  Some things that you can do right away that will definately help.  Implement a low-sodium diet that incorporates a lot of anti-inflammatory foods.  Dr Axe (online) was a good source for me and finding a GP that looks at the whole body health.  Drink LOTS of clean/filtered water (or) bottled from a reliable source.  For me, changing to a really healthy diet and adding supplements really helps.   When you feel lousy you're likely to reach for "comfort foods" that may be working against you getting better.  As you start to feel better, incorporate as much exercise you can muster and definately do the VRT therapies as much as you can.  These will likely feel worse in the short run but are necessary for recovery.  When possible, get off the meds as soon as you can wean yourself from them.   A lot of these meds will impede the progress of VRT therapy.

    Hope this helps and good luck moving forward.

    • emma93780
      emma93780 david_inNC

      Posted

      I popped into the health food shop and they recommended a vitamin called Gingko Biloba which is supposed to help with blood flow through the vessels in the brain and neck and balance issues I was wondering if that would help x
  • deb39563
    deb39563 emma93780

    Posted

    Awwwww Emma it's ok things will get better keep on being your avakit look into everything from physico therapist to chiropractor inner ear is probably the issue keep digging you will find some answers it may take a while but it will happen
  • ella4447
    ella4447 emma93780

    Posted

    Hi Emma. It has been 10 months for me. In order to cope better with this neverending nightmare, my GP has recently suggested sessions with a phychologist specializing in CBT (Cognitive Behavioral Therapy). I plan to make an appointment soon, and I will post back to let you know if it helps. has recently suggested sessions with a phychologist specializing in CBT (Cognitive Behavioral Therapy). I plan to make an appointment soon, and I will post back to let you know if it helps.
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