I cant take much more!!

Posted , 6 users are following.

Diagnosed with VN in March 20015 Along with MAV had VRT for a while seemed to be getting better very slowly with good and bad days 

but since Dec 2015 feel like ive gone backwards Every morning wake up feeling a preasure in my head which seems to get worse the more i move about lightheadedness aswell very stiff neck and shoulder muscles the strange thing is it seems to clear as the day moves on and by the evening i feel 90% back to normal .

Then the cycle starts agian the folliwing morning its seems if my heads bad my neck is very tight.

Had appointment last week to see nuerotologist but she was saying its MAV and then just gave me more pills i know its not the problem but im becoming depressed with all this now to the point i just want to sometimes not wake up.............. im not that sort of person  but after nearly 2 years of this its becoming unbearable.

i sometimes wonder if ive been misdiagniosed or i have this for life any advice or hope would help

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  • Posted

    Have you done any research of your own on this condition?
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    • Posted

      over the last 20 months yes loads but where do you actually start 

      sometime its like i have a band runnung from the centre of my forhead across the top and down the back of my neck aswell

       

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    • Posted

      Yes i get that too sometimes, i. Fact had it,today after an afternoon sleep. an audiologist tried to say,i had MAV but i didn't (i isually treatnit woth a cold pack,around the back,of neck and painkillers.) Have you looked at TMJ, that causes the band and neck feeling.  also the Occipitals (Muscles right at top of spine in lower skull area.

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    • Posted

      Its the Mandibular joint on your jaw. It can caus a lot of,problems. If you just google TMJ,,problems etc  you will b able,to,go from there.  Alsomgoogle the Occipitals, as that can be v. Informative too!
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  • Posted

    Hi Steve,

    you sound the same as me..I coming up 2 years. I've been told I have MAV and MdDS - I had a surgery that went wrong. Lost hearing in one ear and 100% vestibular function on deaf side. I wake up every day hoping the head pressure, tinnitus. out of body feeling will lessen but as time goes on it doesn't ...I am losing hope of any quality in my life. 

    Are you able to go to a public place i.e restaurant? Coffee shop? music venue? dinner party with more than 4 people. Walk down a busy street?

    go into a shop with music on? Do the shopping in a supermarket?

    if your answer is yes,  there is hope for you...90% at the end of the day is great, try using voltaren ( anti- inflamitory gel on your neck/ shoulders -it works -try massage and acupuncture for stiff shoulders. 

    Pills haven't worked for me. Walking and yoga helps me cope

    good luck - it's tough!

     

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    • Posted

      Hi Lynne yes its just so unpredictable 1 day its liveable the next its just terrible there seems no trigger ................on good days i can do all the above when im not good i can do them but feels like im not actually there if that makes sense

      Just cant understand why i always wake up with this feeling but eases as the day goes on

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  • Posted

    I feel very light headed/ strange... totally out of body all the time but when I walk at least I feel like I am doing something, as my favourite position is on the bed. I feel like I'm not on planet earth. Disconnected. It's hard to believe in today's advances in medicine I'm told there is nothing except trying different drugs to find something that ' maybe' can help.

    Most of the time I wish I could have my head amputated! ..but hard call to live without it!

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    • Posted

      Yes agree!  Someone i know has been trying Bowen therapy (Muscle manipulation basically) and had some success with it,mso i am going to,try it when i can find a therapist as i feel  that general medicine wheels out the same old stuff and no one i know has got better from it!!
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    • Posted

      I've been feeling the same way. I've had it for almost 2 week's now. It's really depressing. I'm also, very fatigued, though I don't know if that's associated with the "disconnected" feeling. Sometimes, I turn my head too fast, and it feels like I'm going to fall over...

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  • Posted

    My girlfriend had a series of Bowen theory treatments for migraine headaches. We were really hopeful they would help but the treatments made no difference. I'm reluctant to go down that path. I'm going to give hypnotherapy a go, maybe if my brain is "getting wrong signals" as the vestibular specialist said I can change the signals. ....that is how desperate

    i am...I've tried everything else. lol ??

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    • Posted

      Actually hynotherapy is t such a bad idea.  There's a dr here in Uk,who specialises in our problems (Sadly i cant afford him!) and he uses hypnotherapy apparently (As well as other things)

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  • Posted

    I thought i replied earlier, but dont see it here. So pardon me if this is redundant.

    I have MAV/migraine. And i also second the tmj idea, especially if you are feeling worse in the mornings and/or have facial pain. You could be grinding or clenching your teeth at night. My neuro told me that tmj can mimic some types of migraines and cause dizziness. I was skeptical, but went to physical therapy for 6wks on my jaw, neck, and occipital and I feel so much better! I hardly have any dizziness/ head pressure at all now. I do still have to watch my diet for preservatives and sodium tho.

    Have you been checked for sleep apnea? Morning headache can be a symptom of this. There is also a rare condition, intracranial hypertension, that causes morning headache and head pressure. But it's rare, and has other symptoms like blurry vision.

    It also could be that the particular meds you take for MAV are not working and you may need a different one. And finally, I would take a look at any meds you are taking to see if these things are potential side effects. A pharmacist could help with that.

    I hope you feel better soon!

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  • Posted

    Forgot to say... sleep apnea can make any chronic condition worse or cause flair ups. Tiredness during the day is one sign. And you don't have to be a snorer to have it.

    Also, my physical therapist explained to me that the nerves that become irritated by a dysfunctional tmj start other nerves firing, ie, the get confused. Which is how this condition can cause tinnitus and dizziness. My jaw didn't really hurt, but my neck, shoulder and back of head sure did.

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