Having to live with vestibular conditions

Posted , 8 users are following.

Is there anyone that I can talk too that also has to live with these conditions?

Mine started last year in July when I woke up and went to get out of bed and fell over, violently sick and constantly dizzy. I was on holiday and had to come home, went to doctors and said i had labryinthitus was in bed for 7 days as couldn't get up. Without boring you with everything I have had a lot of episodes since, have had MRI scan and CT scan, bloods, lumber punctures, hearing tests, literally every test possible. All they can say is I have vestibular migraines or vestibular neuritis. I work as a veterinary nurse and have 3 children and am finding it extremely difficult to live with this. I can't spend days in bed when I have children to look after, doctors just want to give me anti sickness tablets and say it will pass. But it keeps coming back every couple of weeks. The doctors have done all the tests they can so no point in going back to them again. I just don't know what to do and hope do others live with these conditions.


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  • Posted

    hi Kath... I too used to live with these symptoms yes. Turned out I had a form of vasculitis. Went through the whole process you are talking about. When I ended up getting joint pain and being so fatigued I was almost diagnosed with chronic fatigue syndrome I finally was referred to a rheumatologist. She recognised immediately that I had an underlying inflammatory disorder. I was finally diagnosed by an immunologist in London. 

    I am wondering what other symptoms you may have?? Any stomach/bowel issues?? Any joint problems. Muscle cramps? So many symptoms really they are too numerous to go through all of them but these are pretty key ones. Also dry mouth or eyes or any kind of skin problems. Not many people have all of the symptoms. Mine were almost all neurological in nature but also always had stomach issues (gastritis misdiagnosed as IBS initally). Anyway, I know what your'e going through. Very disheartening when no one knows what on earth is going on and no one seems to be able to help. 

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    • Posted

      Thank you for your quick reply but no i don't have any other symptoms. The only other thing doctors found out about me was I had an over active thyroid and also i had a slight curve in my spine. I also have chronic asthma.

      The children have got colds and coughs and now I have started again with this so the doctors keeps saying it's viral etc but in our household with three children and a husband there are always colds etc.

      Kath x

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    • Posted

      Hi and yet thyroid issues are part of an auto immune profile #thingsyourdoctor doesn't tell you.  I too have some spine issues. The opposite to curviture but also with prolapse discs and dehydrated spine. I think you need an auto immune workup tbh. 


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    • Posted

      Long time Terry but I guess I would say they got worse decade by decade. 

      My story is complicated as I had something the same really from birth. I think I had a diagnosis early in childhood but...long story short....my medical records were lost when I moved from Scotland to England so all that history is gone. But I went into a long remission aged about 7 til early 20's. From there it took 20 years really to be diagnosed. Symptoms went fro mild to severe and by early 40's I was kind of desperate. Had to leave work. Oh and people kept trying to treat me for asthma which I didn't have! Very annoying. It would not respond to asthma treatments and in the end it was discovered I didn't have asthma anyway. Wheezing caused by inflammation in chest. 

      Anyway symptoms increasing year on year. Something new would come along. All seemingly unconnected. Then my great gp who was about to diagnose chronic fatigue, said she wanted to investigate all options and sent me to a rheumatologist. She referred me to an oral immunologist (she thought I had Sjogren's). And then the light came on. I don't have Sjogren's but another form of vasculitis. All so similar in terms of symptoms. 

      Treatment - so tried mycophenolate. Made a difference yes but didn't touch the neuro stuff. And then I went on a drug trial with interferon and bingo. Two injections later and I am normal. No neuro no migraine no nothing really. Complete remission for 6  months of the trial. They wouldn't prescribe it after the trial. Work that one out. Then I went to a different specialist and he did prescribe it. Had three courses now the last one being 3 years long. Blessed remission from all of it. Stopped taking it a year ago. 

      Symptoms creeping back butt interestingly no neuro stuff. Pain in my feet and some gastritis oh and sinus inflammation. But now been given plaquenil and that has settled these symptoms a lot. Hello normal life. Thank god. I will always have a dodgy immune system. These illnesses are incurable. But cotrollable. There are lots of meds out there that can be used. 

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  • Posted

    Please don't be panic and don't stress too much 

     I am living with this situation from 2010 

    I have worse situation ever during my job in a mountain and I had many many days in traveling by road and by air . A lot of factors disturbed my life and I don't have any problem in blood aur any diagnostic after CT scan aur MRI . Now living with lybrinthitus ,

    There is no medication for this remember but there is a treatment . 

    Poor immune system and not enough oxygen to my brain is a cause with me . 

    I just avoid few things and over come of this doing few things . I was depressed in first few months but I am not now . I can handle this 

    These all good for me as bellow , 

    No liquor 

    No worries 

    A lot quality time / happiness 

    Make a lot fun with family friends 

    Make your self busy almost all the time 

    Excercise at least pump your blood once a day .

    Try to forget once a day that you don't have this problem . Believe me it will work . 

    Avoid excessive salt 

    Avoid soft drinks any 

    Avoid beer and toxics 

    Water fall or river sound sleeping music 

    Will help to heal ,try this most of the time if you can . 

    Eat Raw green excessively 

    Boost up your immune system with various source by the doctor . 

    Drink hot water early in the morning with empty stomach .

    No coffee no tea.  

    You are not sick but you have situation . 

    Not all immune boosters are benefitted in every season . 

    Any pressure to brain will disturb your balance . Imbalance situation occurred with me when I have pressure in my ear or fullness ,only one ear making me staggered . 

    Pressure cause by weakness 

    Pressure caused by spoiled stomach 

    Pressure caused by hunger or gastric situation will disturbed badly and make you imbalance . 

    kind of built in in my inner ear that is default 

    Pron to imbalance or dizziness

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  • Posted

    I'm suffering from dizziness/imbalance for almost 7 years. Mri result are normal.but I have a non working gallbladder and gatritis. Having a bland diet and exercise helped some out with dizziness/imbalance. Also my vitamin B12 levels was so low, taking 1 shot per month also helped. But doctors say there is no relationship between noon working gallbladder and dizziness, but all this started when I run in to severe digestion issues. So only removing my non working gallbladder will tell if the dizziness is due to that or not.

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  • Posted

    I had my first episode about a year ago. It's been a rough journey for the last year. I would be glad to talk to you about this life altering issue(vertigo).

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