Saw ENT specialist, probably Vestibular Neuritis, almost 2 months in.

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2 months ago - I had a common cold. A few days later I had extreme discomfort in my left ear followed by fullness, irritable bowels, feeling sick, sometimes faint and my hearing was not perfect. Over the next month or so, I had lightheadedness and general unwell feeling, but it seemed to have improved. I saw a GP – I had blood tests done, ECG – all fine. I saw an ENT specialist a week ago – suspected VN. I have been doing the catherwine-cawksey VRT exercises. They seem to have helped the lightheadedness. However, I am still having general sickness, have more than frequent bowel habits, feel more thirsty, lethargic. Has anyone experienced these symptoms? I am not sure when I am going to get better? Also at night time I my throat gets very congested and get the urge to cough.

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  • Posted

    In my experience an ENT , neurologist,GP do not know enough about vestibular disorders.  I kept being told I would get better and I didn't.  My ENT admitted to me that we were going outside her expertise.  She booked me an appointment with an otolaryngologist. He was amazing and the specialist I wish I had seen in the beginning.  I am now getting better. Have been diagnosed with vestibular migraines.  These disorders all somewhat overlap each other.  My first dx was BPPV, second vestibular neuritis, I was somewhat disabled and couldn't work consistently or take care of myself. I am on meds now that have helped with most of the symptoms.  I truly suggest trying to get an appointment with an otolaryngologist or a neuro-onlogist (others on this forum have seen this specialist) with these doctors you may get the right diagnosis. And it could be VN but there are others that should be ruled out. Plus-vestibular PT is very helpful.

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    • Posted

      Hi Hmoosey. thanks for your reply. The ENT consultant I saw is also a specialist in Otology and dizziness - not sure if you think that is at all useful information.

      My feeling with this changes daily. I sometimes feel awful and don't want to do anything, whereas other times I am able to run a 17 minute 5k like I used to before I got ill.

      Going to crowded places such as supermarkets and busy trains makes my symptoms worse. I had to get off to train to get more water yesterday.

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    • Posted

      hi ry

      i think thats the right specialist for this. and yes- its a strange symtom to have trouble in the grocery store. even though most of my symptoms are gone, i still am afraid to go to the grocery store. all the carriages, lights, going up and down aisles moving your head. nope. i am trying my best to stay away. my husband has been doing all the shopping. i went this weekend with him just to try to see if i was better. i was, it did flare some symptoms. but when i got home i was fine versus before i started the meds i would be so dizzy for days after. so progress. i couldnt even think about public transportation. i can drive fine now but cant be a passenger. its a weird disorder that i had never heard of. the only thing i can say to you is to talk to your doctor about why he believes it VN versus other vestibular disorders. they all seem to overlap with the symptoms. did you get put on steroids for VN? i did, gained 20 lbs and didnt do much else. but then again-it seems to be the migraines for me.

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    • Posted

      Hi hmoosey

      i was given betahistine but i stopped taking after 2 weeks of no help.

      Nothing else taken.

      i am 2 months into this, and felt good at the weekend, but now feel back to usual with twitchy calf muscles, heaviness in my left ear and not feeling myself.

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    • Posted

      hi ry

      did your doctor actually prescribe you anything? or you are just taking a betahitistamine over the counter? i really cant imagine that being helpful with this. have you been taking notes as to when your symptoms flair? i started doing this- this is what helped me figure out that i was getting headaches (along with this site with people who described vestibular migraines) i started to realize that i would get brain fog- after talking too much, working, ect. some days i would feel ok-but it was always in the back waiting to come out. i think you should go back to the dizzy clinic the otology and ask for some different treatment. mine went on for months before i finally got the correct diagnosis. try to think- when you start to feel dizzy off brain fog- do you have headaches? do you have aches behind your eyes? i am on norotriptiline and over the counter magnesium and B12. i have always taken betahitimine- so i was taking that when i was really sick. did nothing. i would make another appointment.

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    • Posted

      also can you get a referral to a vestibular PT? your system is so messed up, that a PT helps with balance, eye and head movements. doyouget dizzy just moving your eyes right to left or up and down? i did- and the medication immediately stopped that.

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    • Posted

      Only betahistine was prescribed by the GP but my ENT specialist said it doesnt help.

      My main symptoms right now are lightheadness ( but this has improved recently), heaviness in my left ear/left side of head, more than frequent bowel movements, muscle twitches in my calf muscles.

      I am not really 'dizzy' right now.

      I am worried because i have a flight to catch on Saturday and not sure how my ear will respond to this.

      No headaches, no eye pains.

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    • Posted

      I am doing better but terrified of the thought of flying. GP dont know a thing about this stuff. have you seen a neurologist? They dont know much either. nuero-ontologist or Otolongologist is who you should see. do you have access to these specialists? Do you have a dizzy clinic in the major city near you? I cant imagine betahistamine would do anything at all. lots of people including myself took mecclazine (Over the counter Bonine) for the foggy brain and dizziness. this does help but you shouldnt overdo it because your brain needs to be active to fix itself. why dont you buy this at the pharmacy for your trip?

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    • Posted

      Hello. I am now 4 months in, still no real change. I saw a neuro-otologist, did brain mri and nothing came of that. The consultant said to carry on as normal. I went on a plane to Amsterdam, was fine.

      I just don't know how/if ever will this vague, lightheaded feeling which is aggravated by environments with visual stimuli such as shopping centres. I played football (soccer) on Sunday, I felt ok but i felt like my brain was running at a much slower tempo that when i was normal. I run, but i get tired and don't feel as strong.

      There must be a way...

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    • Posted

      hi ry

      are you walking ok? you say your running- there was no way i could do that when i was so ill, i could barely walk straight. keep track of what causes your lightheaded feeling, brain fog. shopping at the grocery store\ mall can cause serious problems. this is important information. all the lights, noise, the going up and down ailses moving head, can send someone in a spin when you walk in and feel fine at first. i know my doctors did the MRI and catsan to rule put strokes ect. so now you know its not life threatening, you have to keep track and try to narrow down what it is you are doing right before you get dizzy brain fog lightheaded. for me- a light bulb went off that i was always looking for tylenol for a headache. my advice is to keep active as much as possible but if doing sports sends you over, dont do it right now. the ENT may not be the specialist you need. they can only do so much but can your ENT order the caloric testing, its spinning and water in ears ect. it helps determine if you have any inner ear damage. this should be done. you should also have a hearing test. if they havent offered, i would ask. if they dont do this, i would run and find a doctor that can. did you google dizzy clinics in your area? you should you might be surprised that there is one close by. 4 months is plenty long enough to need expert help

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  • Posted

    Hi,

    I too had dizzy, but my one was mostly on a particular side. suffered a lot of imbalance, vomitings , headache.

    i had to go for CT brain and the doctor said everything was fine.

    He gave me spin free for three days and then its gone. now it is more than 3 months and i am fine now.

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  • Posted

    Hello RY1991, If you are having too many Bowel movements that means you are losing water. That could be why you are losing water and get real thirsty. You could also be diabetic. When you get too many BM's you need to take anti-diarrheal meds.

    Have you been checked for diabetic problem? That also can make you real thirsty. I always carry a bottle of water with me when I go out and I drink a lot of liquids at home. Sometimes at night time when I urinate at night too many times my mouth gets real dry. Has to do with losing too much water in my body.

    Regarding the vertigo: I have always been light headed and dizzy since I was in my 30's. Now I am an old senior. My doctor gave me anti-motion sickness pills that you can also buy over the counter. During the day I take Antivert generic 12.5 mg. or 25 mg. if I feel I need it more. At night time I take benadryl to make sure I don't wake up with a serious spinning vertigo.

    I have noticed that certain foods also cause problems with allergies and they make me feel dizzy. I can feel my ears hurting when I eat or drink something that is not compatible with my body. When I wake up in the mornings with too much mucus from my nose I have to take anti-mucus relief to help to get rid of the dizzyness.

    I get a flu shot every year. It has nothing to do with my vestibular imbalance problem.

    My advise is what problems I am having and how I have to deal with it. I am not an expert so you need to do what is best for you. Do your own search on Youtube to help you see the type of exercises that people are doing to help get rid of vertigo.\

    I will be seeing a vestibular therapist to teach me how to do the exercises to help me.

    One last piece of advise: When I go out to eat at a restaurant I take two tablespoons of pepto bismol to protect my intestines from bacteria and also to stop any type of diarrhea. A doctor a long time ago told me to do that. I keep it in the fridge to keep the pepto bismol cold because it taste better. Plus, I also take emodium 2 mgs. I have been doing that for years. I never know when I will get the diarrhea all of a sudden.

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    • Posted

      Thanks for your detailed reply. I think I had a cold last week which made my throat need more water.

      I am trying the VRT but not sure if it is helping, 2 weeks in.

      I had a health check last week, i am healthy, not diabetic issues.

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