I'm desperate...My 12 year old son has had severe 24/7 Vertigo for 5 months now along with 24/7 nauseousness. He made a comment how he just wishes he wasn't alive and he cant handle it anymore. The ENT diagnoses him with Vestibular Neuritis and that only time will tell. The doctor also said he should be getting better by now...But my son is getting worse. If anyone can suggest the best top doctors for my son...anywhere. I'm desperate. Thank you
The best doctor/specialist for this type issue is a Neurotologist (Otologist). They only deal with inner ear issues. If he has vertigo is is more than likely an inner ear issue involving the otolith canals.
Where are you located? US or UK?
I'm so sorry your son is having to go through this. I agree with the other poster, that your son should see a neuro-otologist. Maybe it's not vestibular neuritis and a neuro-otologist will do testing to check the inner ear. Please help keep him strong. It is very hard to deal with this all the time. We completely understand. Please come back to let us know how things go. Didn't the doctor give any exercises for his eyes to help adjust? It's called vestibular rehabilitation therapy (VRT).
Does your son have 24/7 room spinning vertigo? Unable to walk? After 5 months he should not be like that with VN. These are my symptoms currently 8 weeks into VN. Lightheadness,dizzy when turning or tilting my head, trouble with balance in dim or dark places, bouncy out of focus vision,headache, nausea, horrible anxiety.i do not get the room actually spinning but my symptoms I listed above are with me all the time I never feel like my old self. There is a specialist that frequents this site and hopefully will see your post and give you some recommendations. I have not worked in 8 weeks due to this awful illness. How hard it must be for you and your child. I would definitely get another opinion. He should be getting some relief by now even if it's only slight. I am probably 20 percent better than onset. Slow recovery with this one. Prayers to you!!!!!
Where are you located, so that we may recommend someone?
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
I had VN for nearly 8 months so can certainly sympathize with your son. It was horrible and many days I felt like giving up. From what I have learned it is not that unusual for this to last months but it DOES end and he can get back to a normal life and be back better than ever. Please let him know he's not alone and that things will return to normal before he knows it and this whole experience will just make him a stronger person overall. Hang in there! You are all in my thoughts
Hello bilbo543. If you don't mind how long before you started to feel better able to work/drive? Did you do any therapy or take meds? I am 2 months in. Did you make a full recovery? Were your symptoms 24/7? Sorry with all the questions but it is so great with success stories and are few.
Hi Melanie, Do you get the derealization feeling where it feels like you're not really here? It feels like everything is unreal or that you're in a dream?
I was able to work and drive after about a month but basically just laid in bed for many months after that when I was off work. I saw a PT and did rehab therapy. I didn't take any meds l, as anything they gave me never did anything. I would say I'm about 98% better now.. I feel great but still feel timid a lot, almost like a ptsd kind of thing where I get scared of dizziness but it never really comes
Hi Melanie
I have those symptoms too ... I don't get the room spinning just the feeling of brain swishing like on a raft ...motion sickness..naseous headaches ...head pressure . I have difficulty being in restaurants ..stores.. I went to see new neurologist after seeing many doctors over the past 6 years and this Dr is the first one who said vestibular disorder and gave me exercises to do and also prescribed Zoloft. I already take topamax for headaches because they were unbearable..topamax was from previous neurologist. Praying that it all helps. That we all get relief from this ...especially this young 12 year old boy... I know how horrible it is for us adults and the anxiety stress frustration it causes .
Yes I know what you mean my anxiety has been so high. If I ever get over this I too will always be afraid of it. Hope I can work soon. I'm just so afraid to. My co workers will say I've had a ear infection before and I say no you don't understand this is wayyyy different lol Hate explaining the illness to those who don't know because you can't explain it.Did you also have the bouncy vision and unable to focus? I have a horrible time at night I can't be out after dark. My vision goes bonkers!!!!!
All the time Nikki! It is all day. Never stops.
Wow lily 6 years? I don't like to hear that. That's terrible!!! Can you work/drive?
Nikki it's like I have to focus on anything I do way harder now and forget going out into the night it is 10 times worse my vision really freaks out then. Awful awful stuff.
When it started in 2011 I had a difficult time working. Worked at a desk and I was miserable... not knowing what was going on . I've had so many MRIs I mean everything . I drive but I get anxiety and I feel weird in head at times but need to work
I have heard that even when symptoms start to get better the anxiety remains because you have had it so long and sometimes anxiety can mimic a lot of your original symptoms and make existing symptoms worse.😔
I believe it... anxiety comes out of no where. Even though I always had problem with anxiety but these symptoms makes it worse... my symptoms are an all day everyday thing . Even now... feeling that swaying / motion sickness..nauseous since this morning. Did some exercises... I'm in California
Melanie, How do you cope with the derealization? It's horrible in stores and restaurants.
Hi Lily, Are you just now starting the Zoloft? Can you please let us know how it helps you? I've heard good things about it. I'm on Imipramine but it seems to have stopped working because I feel anxiety badly about going out anywhere with my family. I was feeling a little better and was able to be in stores longer but things feel worse again so I'm considering changing meds if possible. Thank you.
PS-If you get derealization, please let me know if Zoloft helps rid this too. Thanks so much!!
Are you on any medication, Melanie?