Past few year i have been experiencieng dizzy spells on and off . Been to all possible specialists . Was suspected of having hypoglycemia initially , then came insulinoma , then paraganglinoma , then phecromocytoma . None of the noma s stood the diagnostic tests . In the mean while went thru all kind of cardiac check ups and alternative medicines for that. Come october 10th this year i had a terrible spell of dizziness which then evolved in to imbalance and abnormal gait ( I tend to deviate towards right ) Then some ENT guy made me go through MRI which again was normal . Blood work for thyorid panel and thyroid anti bodies were reported normal . He referred me UP to a neuro physician who did further testing like ENG, Balance assessment and it tuned out to be vestibular neuritis .
I am 43 , fairly active Male . This balance issue has pulled me down in a big way . I am unable to walk for a hundred memters without needing a course correction . People stare at me as if i have downed a few drinks . I am a vegitarian and have had no alcohol for last 10 years. I have a feeling that this thing is not going to end . The neuro guy says that this disease is self limiting and has put me on steroids along with threatment for vertigo and dizziness . He also added that 95% of the patients having this neuritis dont have a repeat episode . I feel so helpless and depressed . Been thinking of making a will . Despite the dr s assurances and confirmation from second opinions I still feel doomed . This is a cruel disease to have . Where every Dr says you ll have to give it a couple of months to resolve on its own . They also say that medicines for Vertigo ( cinnarizine etc) will delay the ultimate result as the brain is not allowed to compensate for the loss of balance . One has to try and keep following his routine so the brain gets a chance to compensate and retrain it self for new rules of balance . There are some parts of days that i feel very upbeat and then the dizzyness strikes and the cycle begins all over again . I feel exhausted all the time . Any body else is going through this hell ? Has any body tried any different approach like alternative medicines or some therapies ???
Hi,I m so sorry you are having to cope with this awful condition,my heart goes out to you as I suffer the same hell.i had it for 6 yrs.i have seen many doctors and had many tests that all came back clear.i was only diagnosed 3 yrs ago with uncompensated labythrinitis.Do you anxiety aswell?the only thing I can say to you is that you re not alone,I do the crawthorne cooksey method,it helps to keep my neck from feeling so stiff and stops the spinning feeling .i wish I could be more help to you
Hi I to feel sorry for you, I have bppv I've had to chuck my job in I can't drive or go shopping alone I must look like I've been drinking I hate going to bed coz that's when I get dizzy the most, I went to the hardware shop the other day I looked up at some lights and nearly fell over from being off balance. I'm told it will go but I honestly done know how other people cope, how the hell are you ment to work if you can't even drive my heart goes out to you and others with this it's not nice it has totaly put my whole life in turmoil
Hi Sarah,I m sorry that you are suffering aswell,can I please ask if you suffer from anxiety? I have terrible anxiety and I ve been told it's connected to my balance problem
Yes fudgeybear 1 i suffer from anxiety . Any correlation between the anxiety and the symptoms .
Yes sarah it feels awful to be unable to do simple tasks . Plus you become too concious about your posture , gait etc etc. I think we re all in the same boat which is rolling and rocking :p
Hi yes I have anxiety I also have vision problems I can't judge the ground very well somedays everything looks surreal it's taking a toll on my family money wise, I baby sit two days a week and my daughter is so worried somedays as she's leaving I can see in her eyes ( our you going to be ok ) I do have a partner to help but he has to look out for me as well now . I have had some nasty falls due to losing my balance so god knows when I can look for part time work again and I'm so scared it might come back and then what do I do about that job?
My doctor told me that when the signals in your ear become unbalanced it sends out the signal for the body to panic,hence the anxiety,there must be something in it as everyone that I ve spoken to who has similar problems with their ears also have anxiety
So nobody has undergone vestibular rehab exercises ? I was thinking of taking one . But the neuro didnt recommend . However most of the literature on net suggests that rehab exercises is the only way . Any ideas ??
Are vestibular exercises the ones where they lie you down on your side then sit up quickly and lie on the other side?
My eyes can t always focus Sarah,I can t even think of working at the momment,I feel guilty because I m not looking after my family the way I would,I just want yo be normal
Are vestibular exercises the ones where they lie you down on your side then sit up quickly and lie on the other side?
Hi not sure but I saw a dizzy spell specialist and she did do that to me I felt better for two days then I woke up with it again, I think you just have to try anything I even tried earplugs in my left ear. Sleep half up
HI
I have had this since January and I too like you have felt my world turn upside down, I try to remain positive and used to be a really outgoing confident person, I get very upset when i talk about this irritating problem and sometimes start to cry, i think pull yourself together woman ( am i depressed ? why do i cry ? ) I used to love walking at weekends but all that has stopped so no exercise for me !!!! i couldnt walk on the uneven ground. At first i giggled and made fun of it saying look no alcohol cheap way of being p**ssed but then its got more serious, and i like many others i presume begin to question whether there is light at the end of the Tunnel. I am awaiting my MRI results next week but anticipating that it will be normal. I went to physio yesterday at Derby Royal and she was really helpful and explained it in more detail thats its nerve damage following the virus. I wish i had broken my leg rather than having this. I too find shopping in a supermarket or anywhere stressfiul and begin to panic and want to get back in my car, again like many others have mentioned. I used to love browsing on my own. I dont know if others try to explain it like i do , i say when i walk on even ground i feel like my head is separate to the rest of me , i feel like one of those nodding dogs you sometime see in the back of cars??? i also fnd i am forgetting things but is that my age ( 53 and female ) I also sense memory loss and cannot bring things i used to like names etc instantly to the forefront, which again upsets me. I have began a new business so not off work due to being self employed and hope i can make the business grow. I was just curious if anyone was getting disability or is it called PIP these days. I am still managing to drive ( thank god ). I also have found that i have had to slow everything down like walking. It is most annoying and upsetting and i am glad there is a group like this on here, it has helped me by reading what everyone else is feeling or going through. We are still normal and i do think there are people worse than us ( me trying to stay positive )
Aw sue,you ve just described everything I would have said,I loved shopping!!i was never in the house,if friends were going away I d be the first to say I m coming 😄 my thoughts can be confused( I am 45 female ) but when the doctor explain about signals in my brain were struggling with my ears I now just think that my brain is working very hard trying to my ears out it effects my thoughts my eyes can t always focus either if I m having a really off day.i claimed PIP the lady had to come to my house because I find it hard travelling I told her all my problems and how hard it is to live a normal life and I recieved £21 a week.i wish I d never bothered,I can t work at the momment and I ve never claimed benefits.the whole thing is degrading
no thats the epley Manoevre
£21 a week !!!! what a waste of time !!!!!!! Dont they realise how debillatating this thing is ? Again its only us who suffer who realise how it ahas turned our lives upside down !!!!! Cant work but cant claim anything !!!! typical
I know,that's exactly how I feel,I m sure people think we re just a little big dizzy,I get people saying,just power through,get yourself a little job,or words similar.i d be over the moon if could just go and have a little shopping trip with my little girl
Just hang in there i to have vision problems it must be part of it all. It's hard for others to understand unless they have had it, we don't look sick sometimes my partner says to me you better now coz your hanging up the washing, he doesn't know I'm spinning out while I'm doing it or if we go for a walk I'm focusing so hard on the path I end up with a headache. I woke up feeling great some mornings have a shower go to wash my hair and it comes back for weeks. Try and think you can to suppress it
Hi sue I know exactly what your saying I had to resign From my job in a warehouse my income protection wouldn't cover vertigo nor would government benefit they said to me vertigo will go away, he said it could been gone by tomorrow two months on I still have it,if I want help I would have to go on newstart and wait 12 weeks coz I chuck my job. I had to pull my super to help us out. Anyone with any sort of illness must pull there hair out