Hi it all started out of the blue 8 months ago. I woke up one morning and felt dizzy out of nowhere and it never left. I have constant dizzy lightheaded feeling from the moment I wake up to the moment I lay down in bed. The only time I don't have it is when it's dark in my bedroom and I'm laying down sleeping or watching a movie on my phone in bed. I have been checked for diabetes and I have had an Mri done , eyes checked and even tried chiropractic and acupuncture. My Docter thinks it's the inner ear and I am suffering from vertigo. But his diagnoses does not sit well with me because I have no feeling of the room spinning it's hard to explain its more loke lightheaded dizzy rocky feeling. I do have an appointment to see an ENT in a couple months but I have another doctor app comming up next week and wondering if there is any other test I can request in the mean time. The doctor did prescribe me serc 16mg I tried them for one day and stopped which I don't know if it was the right decision because I don't feel like I have spinning vertigo.
Not to sure how to edit my post but I also find my eyes feel like they have a hard time keeping up sometimes especially in busy places like a mall or when there is a lot of moving objects around me
I forgot to add my eyes have a hard time keeping up with things in busy places or if the is a lot of movement around me . But when I had my eyes checked the doctor said my eyes were fine.
The next time you see a physician, he or she should give you a good complete examination. This includes checking for eye movements, both in the light and in the darkness. He or she should also look at your eyes in different positions (lying down, on your left and right side). This is needed for diagnosis. I need to point out that "vertigo" is not a diagnosis, but a symptom. Vertigo has many causes, which needs to be clarified.
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
This sounds very similar to what I have been suffering from for the last 6 weeks.
I have a constant what I describe as 'spaced out' feeling like I have had several pints. Mine never goe but seems worse as night.
I was diognosee with labyrinthitus but I am sceptical. Initially I was bed ridden for several days. My eyes would sting/ache if I went for a walk or went to shops.
My eyes seem to have improved now but still very spaced out.
Im beginning to think mine could be linked to anxiety as my stress levels are very high - but not sure if the anxiety it a cause or symptom!
You may want to look into Verticle Heterphoria, it's a eye conditon but most eye doctors can't test for it. ALso look into vestibular migraines. Did you have a bloood test to make sure your B12, Vitamin D, Iron, and Magnesium are all good? When they are low you could feel off and by the way just about everybody's Vitamin D is too low so don't freak out if you see your number low.
When the Docter diagnosed it as vertigo he did do a test were I had to follow his finger with my eyes and he said he noticed one of my eyes twitch. It was in a well lit room. I will follow up with him when I see him on the 24th and try to get him to go more in depth with lighting and positions.
I haven't had my blood checked for that as far as I'm aware I will make sure he looks into this
Hi Kyle - I have all the same symptoms as you plus some more. Mine is Migraine Associated Vertigo but I also dont have the spinning. I am dizzy, it was 24/7 except when I lie down and have painful eyes. They were also jumpy and I had pins and needles on top of my head, headaches, ears feeling full, neck stiff and cracky, painful cheek, jaw, teeth. The back of my eyes felt like they were being pulled out. It took a year to get a diagnosis of MAV and then a further three years to find the right med to ease it. I am o n my third round of botox (to relax the trigeminal nerve) and gabapentin. Ive had about 9 other meds. Most of the head stuff has gone and the dizziness is only after about 8pm at night now. Apparently its caused by extra electricity in the brain stem and whatever it crosses, those are the weird symptoms you get. Ive researched it big time and there are a couple of sites on facebook that can help you. MAV SUPPORT and VESTIBULAR MIGRAINE PROFESSIONAL. I saw endless ENTs initially and a neuro surgeon and now I have two neurologists. One is a headache specialist. Its other name is silent migraine. All the migraine aura symptoms without the painful headache. Although i do get true migraines also.
Forgot to say Kyle, you need to take the serc. The sooner you get this stopped the better. The longer it goes on, the longer it goes on. It does sound vestibular to me so you are OK to take them. It might just stop it for you. Did nothing for me but you never know !!
You also get brain fog ! Meant to add, my eyes were jumpy and still are if I go into a shopping mall. Things too loud also. Lighting is a big problem as are crowds. Its over stimulation - all part of MAV.
Hi Kyle. I had a vestibular disorder for about 10 months. I'd like to say I'm now full recovered but stil occasionally get symptoms 'though nowhere near as bad as they were.After loads of hospital appintments with consultants, Gp's etc etc I had vestibular rehabilitation therapy and that was the turning point for me.
The reason I'm writing this today is because alarm bells rang when I read your post saying that you watch movies on your phone in bed.
One ( rather peculiar!) thing Ive noticed since all of this began )in exactly the same way as you BTW) is that looking at my mobile phone or laptop for any length of time would make my symptoms 10 times worse the next day. Weirdly ( and it's happening right now!) I get ringing in my ears after being on my laptop. It seems to bring it on out of nowhere. I know we're all different but I really wouldn't advise you to spend long periods staring at you phone or your computer. Hard I know but I don't think this will be helping you with your problem.
Did you feel spaced out ??
What was your vestibular problem?
I am spaced out all the time for the past 6 yrs.
I am spaced out all the time for the past 6 yrs.
And you havnt got to the bottom of it ??
Nope, My new nuero thinks it Vestibular migraines and I had 1 round of Botox injections. Still waiting to see if it will help, but I don't have an answer as to why I am spaced out and it never stops for the past 6 yrs 24/7.
I started 6 weeks ago - I felt 'dizzy' and not with it. My eyes were weird and would ache when I did anything.
To cut a long story short I'm still constantly spaced out as if I'm dreaming - does this sound familiar ? I have notice me it seems to go worse at night or if my anxiety levels rise. Mornings when I wake seems to be best but it's still there.
What do you take for vestibular migraines ??
Hi Kyle, I think there's a bunch of us that have a Nerve / Neurologiacal condition that gets confused very quickly, and runs down an Inner Ear diagnosis, and treatment path.
I have tried many Meds, incl Serc / Betahistine, been to Vestibular therapy, nothing making a difference, untill i started instisting that i was NOT "Dizzy" and did Not hever vertigo (Or any Inner ear symptoms)
Once I started describing this as "Extreme Light Headedness" "Distorted / Unstable Vision" We started a new rung of tests. After previous Echo's, Brain MRI's, CT Scan's, Heart Monitors worn for days,
My condition, started with a Pre Syncope episode that came out of no where, and I've had 3 more in the last 8 Months, and it has progressed to Numbness in the face, and I feel like the Center of my spine gets a little numb.
I went in for a Cervical Spine MRI W/ Contrast, which with all of the other tests, came out "Normal", but I did a Tilt Table test, and after 27 minutes standing on the table, I lost conciousness.
They put me on LOW blood pressure medecation (Although my BP always read Normal in the ER or on Dr. Visits) "On the Table" my heart rate dropped below 30bpm in 4 seconds, and my blood pressure dropped DRAMATICALLY.
So I get a reasonably Uncertain Diagnosis "Neurogenic Syncope" that no one really knows anything about, and I'm put on Fludrocortisone to keep my BP from dropping below a certain place, but the meds Amplify my Symptoms, soI stopped taking them, and my Face is less numb.
The tilt Table, after $15,000.00 of Tests (2015 and 2016's $7500 Deductible) was the ONLY test that was actually Conclusive, (As far as results, but no real "Treatable Dignosis yet)
The way it was described to me, is that the nerves in my Spine aren't coomunicating the proper requests for Blood flow regulation, and blood may be staying in my legs.
I'd urge you to have a Tilt Table test, and see if it could be a Nerve / Spinal / Strange Blood pressure fluxuation (Even with normal readings) I had my BP taken 200 times in the last 7 months, all read completely normal, till I finally passed out "Under Supervision" hooked up to instruments that measured it, on the tilt table.
I have
- Extreme Light headedness (Always "Falling / Never Spinning)
- Tinnitus in Both ears (Onset w/ this condition)
- slightly Numb face
- Slight Pressure in my Jaw, side of my neck, around My Carotid Artery (Which I've had checked w/ Echo)
I'm actually going to an appointment right now, and asking to be tested for Lymes, a Complete PET scan, a complete top to bottom Spinal MRI including Contrast, a referral to a Cardiologist to talk about the Tilt table from a different Perspective / knowledhe base. FULL cancer screening etc...
Obviously can't "Let this go" I'm trying to live my life, as active as I can, and just work, and socialize through it, but my quality of life, and my Energy level, from this, has diminished drastically in the last 8 months, I'm on an extreme health regime, doing light cardio, resting Twice as mich as I ever did (Till 8 months ago) I'm 46 years old, and I basically felt the exact same, from when I was 8 years old, untill "One moment" 8 months ago, then, since I stood up from my syncope episode, everything's been very different. I really thought I had a Stroke, but was cleared for that.
Good luck Kyle, keep searching for answers and tests, and don't let them wait a month between check ups, you'll lose a whole year of your life doing that. I'm going to start getting more tests and opinions every week.