Vestibular Neuritis??! Please help!
Posted , 9 users are following.
Hi Everyone!
I'm really looking for some input and advice... and maybe stories from those who are suffering with Vestibular Neuritis or who have gone through this in the past. I feel so alone, anxious, hopeless and depressed. 
I'm actually not really confident if this is even what I have, but so far two GP's seem to think so. Here's a brief history of me.. I'm 34, female, always been physically healthy, my diet is pristine (no dairy/gluten) and I'm very active. I have always struggled with hormonal issues (extreme PMS), health/general anxiety and depression. I have struggled with mild vertigo/dizziness 7 years ago and then again 5 years ago when I was pregnant. Both times sent me to the doctor but the symptoms went away after 2-3 weeks max. I have also had a few episodes of dizziness here and there over the years but only lasts a day. So here's my story... forgive me if this is a bit long.
Almost 6 weeks ago after an evening run I felt dizzy... non spinning. Just like my equilibrium was off. This has happened before, so I didn't think much of it. It went away shortly after that. The next two days (Thursday/Friday I got a few minor dizzy spells, but wouldn't last long. My period was due to start, so I assumed it was from that. Anyway, that Saturday at 1 AM I started my period. I went back to sleep and woke up with a really bad one sided headache/neck ache... worse than my cramps! I got up had breakfast, took some pain meds and then got back in bed. A couple hours later I felt hungry so I got up... that was the moment my nightmare began. I was SO beyond dizzy... it wasn't spinning vertigo. More of a swaying, loss of balance, whirling sensation. I also felt very lightheaded and anxious. I felt like I was going to vomit or pass out. I got back into bed and my husband brought me some food, as I felt like maybe I needed to eat. It seemed to subside after that. But every time I got up the same thing would happen! I went to my GP that Monday and at first she thought it was my iron, as I have suffered with this before... But I take an iron supplement and my blood test was fine. She she then thought it was BPPV. Sent me to a physical therapist... who said that I didn't test positive for BPPV. So, my GP did some more blood tests and wanted to order and MRI. Went to another GP for a second opinion and he said the same thing. My MRI and all blood tests came back perfect. So, they both now think it's Vestibular Neuritis, referred me to a Neurologist and want me to take 15 days of a steroid (prednisone.) Which I'm reluctant to start. I feel like I can function more than I could 6 weeks ago, but I'm still debilitated.
These are the symptoms I'm feeling on a daily 24/7 basis....
1. Non spinning Dizziness... more like a swaying, head whirling sensation. Sometimes I feel like I'm being slightly pushed to the right or pushed forward. Pressure in my face and a heavy head. Like it's going to fall off. It's way worse when I move my head or when I'm walking around. When I'm lying down relaxing, it literally almost completely subsides. I do feel it when I turn over in bed, but it's not severe.
2. I literally feel like I'm BUZZED/DRUNK! This is actually the worst symptom of all. I literally feel like I've had a couple glasses of wine and I'm waiting to "sober" up but it never happens.
3. My eyes can't focus very well at all... I don't really experience bobbing or double vision. They just feel heavy, pressured and tired like they are moving faster than my head. I have a tendency to close my right eye because for some reason it helps me focus better. Looking in the mirror feels weird. Again, like I'm drunk or maybe even stoned.
4. Brain fog, lack of mental clarity and exhaustion is unreal. It feels like I haven't slept in days or I'm living in a dream.
5. Right sided neck pain and headache... sometimes it radiates behind my eye. It's not severe or anything and not always present.
Things that make it worse are anxiety, if I'm hungry, grocery stores/shopping, alcohol/coffee, if I get upset or cry (which I've been doing everyday for the past 6 weeks) or if I'm extra tired. My symptoms always seem to be worse in the morning and start to subside a bit later in the day...
I'm a bit reluctant to believe it's VN as I didn't have a cold or any type of virus before this all started. I also haven't had any ear pain, fullness, pressure or ringing. I thought it could be hormonal as this all started the day my period started. But my GP seems to think it's just a coincidence. I also thought that it could be my blood sugar as I feel way worse when I'm hungry. But she did a diabetes screening which came back perfect.
I feel like I'm at a loss and I'm going to feel this way forever. I just don't know what to do. My anxiety and especially my depression is at an all time high. I dread every day. Could an inner ear problem really cause all this? I went from being an active person to barely being able to wash the dishes. I feel so guilty because I'm a stay at home mom to 2 kids and I feel useless.
Anyway, any advice or input would be much appreciated!!!
2 likes, 5 replies
michael22645 alexandra_87402
Posted
It's dec26th I've been sick since dec 2. Was the first ER visit.They gave me prednisone but that worked very minor.Then another doctor a week later have me dexamethasone.That picked me up right away. it took 75% dizzy ness away. Still haven't been able to go back to my job. Going get fired. Try dexamethasone.
michael22645 alexandra_87402
Posted
scott80786 alexandra_87402
Edited
I have been on proclorazine which appear to reduce the dizziness or feeling sick but do not make it go away!
I also tried betahistine but they made me feel really sick. Also seen a neurologist who like all the doctors have just said that it’s vestibular neuritis and will pass with time!!
The worst thing for me is the constant foggy ness. It’s like living in a bad dream
I am due to see an ENT specialist but how long til the appointment comes through is anyone’s guess.
I truly feel your pain and anxiety as this is the worst thing I have personally experienced.
The only positive from what I understand is that it will go away, it’s just a matter of time.
I am back at work but am fortunate in that I can use time owed and work from Home on occasion.
Stay positive and I wish you all the very best.
wayne24802 alexandra_87402
Edited
Hi Alexandra sorry about your illness .. you've basically described everything I've gone through for years now .. at first when mine started I thought it was brain related.. then allergy related and so on and so on ... it took several ct scans .. allergy tests .. bowel screens and basically years of doctors telling me it was all in my head .. then one day a specialist recommended me to a balance specialist who done certain tests via something similar to 3D goggles to diagnose me as having vestibular neuritis which in a lot of cases is untreatable.. however with certain exercises things can improve a hell of a lot ... if you need any info you're more than welcome to contact me .. don't despair
jack11633 alexandra_87402
Edited
Hugs Alexandra! I have had all this too exactly but this is my second round with this....This second time I have muscle pains and TMJ. (I never actually recovered from the first time, just symptoms mellowed right out) my new doctor thinks its more an autoimmune disease..haven't had an mri yet for MS yet but just did blood work for Epstein Barr/ Lyme's disease, and shes checking my cortisol levels I think for adrenal glands, not sure if your doctor checked for all that? Also I have learned from all of the people suffering from similar things like us that some never even had a cold or flu prior...which is the same with me...I still have a hard time believing its my ear or VN. Have you read anything about the virus that comes out when you are stressed? Related to herpes? thats another thing I read about. I have one child and have been hardly able to be a mom/wife since November. From what I have observed is stress/anxiety/depression makes this worse and this illness gives you all three...so far I went on dairy/gluten free diet (you live like that already) and taking lots of turmeric for inflammation, and garlic pills, I also read from a lot of posts that CBD oil works amazing..so I got some and low and behold I really feel progress from it, I just reordered it so I don't run out. I keep telling myself this will pass and that I will really make it up to my son and husband when I am better..I know this illness sure gives me perspective on valuing my health, family and not taking anything for granted. I also read somewhere that when you surrender to this dizzy illness, just accept it as your new normal instead of constantly searching for answers it will simmer down...I think I have been able to do this in the past two weeks..with the help of my CDB oil ( I am not into pot so I was super hesitant but after reading about it I realized it was just my own ignorance, lots of testimony on its healing abilities)
Joining a facebook support group was really helpful too! Just getting support from people who know what your life is like is awesome..because until you have had this illness nobody knows what its like and can easily said its all in your head! Keep us posted on what you find out! I find that the most frustrating part is finding posts on line of similar situations and then they never come back..