I've been reading the boards for a while now trying to find solace in other people that know what this is like, but figured I should just post.
Diagnosis: VN, since May 2013. I haven't had an MRI yet, tho I mentioned to all DR's I've seen that my sister was diagnosed with a GBM brain tumor @ 25 6 years ago. I am currently trying to get an order in for one.
My symptoms: I am not really dizzy anymore, this seemed to stop a week or so after it was at it's worst. The most constant thing is this feeling of being out of it/the dreaded brain fog. I can't seem to concentrate and constantly feel that I am not normal. Sometimes it feels like pressure, others just a haze. I feel like this for what seems like most of the time. It's like I am forgetting what normal even feels like. Is this normal for you guys? The other horrific symptom is the anxiety. I've never had anxiety/panic issues before, but for the last month it's consumed me. I did get a RX for xanax, which though I try my best not to use, seem to be taking often.
Background: I started getting dizzy around the end of May 2013. It would happen suddenly, usually in a store / after getting of the subway when WHAM, overcome with dizziness and was convinced I was going to pass out. It would pass (thanks to water and running home to sit down) and I didn't think anything of it. About 2 weeks later, a Thursday, I was getting dizzy every time I moved it felt like. Getting up, moving my head, etc would cause me to get extremely dizzy and panic.
I went home early that day and a few hours later, my heart was racing and I was so scared that I jumped in a cab to go to urgent care. They did an EKG and blood work and told me to just go home and schedule an appt with my GP. On Saturday, mid-panic attack, went to the urgent care. The dr told me he thought I had Labs and sent me to an ENT. After waiting a week to get in, the ENT sent me to get balance testing done. Another week goes by and I finally see him again with the results. He told me they couldn't rule out BPPV and sent me to VRT. In about 5 minutes she determined it wasn't BPPV and told me she thinks it is VN. While she told me that she didn't think it was something more serious (ie a brain tumor), I am still so worried that something else might be wrong.
So far, I've only been able to see her once. I've been doing the exercises at home (focusing on the letter and moving me head, walking and moving me head, balancing). Some days it feels better, others just awful. Today is one of the crap days. I am so out of it, especially after a terrible night of sleep. I am getting on a plane on Saturday to see my family which I know will be great, but I am also afraid of the plane ride and what it will do to me. Especially because I am not 100% convinced it's just VN. I guess I am mostly posting to write this all out, find allies in the community, and reassurance that my symptoms are all pointed towards VN and not something else. Thanks in advance if you did actually read it all!!
i am so sorry for all that you are going through. i myself have menieres disease which landed me in the hosp. for 2 nights with vertigo and non stop vomiting. it all is so very scary. i also do the exercises for inner ear disorders and i still get dizzy doing them. i have learned the patient has to be patient. i am on xanax for panic and anxiety which really helps. when/if i have another episode i have to switch to valium and zofran and ride the episode out. i am on a 0 salt 0 caffeine,0 chocolate diet which is the worst of all because, i love coffee, chocolate and salt is in everything and i mean everything! this is no fun that is for sure but so far the diet seems to help as does acupuncture and physical therapy.. i sure can relate to what you are going through...always waiting for the ax to fall...i wish you the best of luck and if you can not get a true diagnosis from one ent doc go to another. also do get an mri asap. good luck!
I have vestibular neuritis since October of 2012, ugh! When I write that, it really is such a long, long time. :- I've had the 'brain fog' as you say for that long. It seems I've forgotten what it's like to feel normal, so I empathize.
Some one said that part of it may be psychological as well as physiological. I don't know, all I know is that I don't want to get too used to it if this is true! There are only 'windows', glimpses of what it feels like to be normal. It's been a long haul. The anxiety accompanies it, like a very bad friend, that's for sure. I take a beta blocker to offset the panic that I feel. Even though I've never fallen, some thing tells me that my head is going to meet the pavement. It's never come close.
I actually have taken a plane ride, during all of this. In fact, in your neck in the woods, from the west coast all the way to the east coast!! You know what? It was absolutely fine. I've never heard anything negative with plane rides and dizziness yet with people but every one is different.
Hope you go through with the MRI, and go to an ENT doc soon, find a diagnosis soon so you at least know what you are dealing with. I went to rehab therapy for a few weeks as a referral after being diagnosed, and it helped a lot.
Hang in there, I know it's really tough right now, hope you get a diagnosis soon and get on a track to feeling better, whew, just like many of us!
I'm not sure if you're still checking these posts but I just wanted to ask how you both are feeling now?
I've had VN since July this year and I really can't seem to tell if I'm getting better as I genuinely don't remember how i felt a month ago i've had to start noting it down in order to keep a record of my recovery (if it exists)
Many, not all, symptoms of the last year have greatly diminished or gone away. I rarely have fierce head aches like I used to, brain fog, I don't struggle keeping my head up, and only on occasion feel swimmy, like I am on a boat.
That being said, it is still an every day struggle and usually it's a tremendous unsteadiness on my feet. I get very tired and these days have started to carry a walking stick or cane, especially on really bad days. Standing in one place is so difficult. The worst thing is in a supermarket line.
Like you, I have moments, and even days, of questioning whether I've really gotten better. I think recording it is a great idea! I've done written and by memory kept record, noticed the things that have gotten better amongst the huge struggle. I think with this illness we're not alone that it's hard to see how much progress we have made.
AmberWaves, thanks for your response. I'm so sorry to hear you're still feeling rough.
This illness gets so depressing, especially when you have downturns :S
My symptoms seem to have shifted sides overnight i.e. the pulling and imbalance sensation I used to get on my right seem to have moved to my left side now, the first of which I experienced today and it's scared me so much to think that everything is starting all over again
It's quite easy to lose hope with it all but we'll just have to hope and pray...