Dizzy for the past 8 months

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. 

HI Kyle you juste discribe all my dizzynes at 100 pourcent i am 54 old men suffer now for 16 months . so 2 month ago i start to get more agresive whit my eye exersice .looking left and right 25 step in my one hour morning walk ,put one feet in front a other for 25 step .look up and down  25 step  and now the last week  i also do 15 step eye close  and start again 25 step look left and right etc  etc  for the full one hour walk . it help  not much BUT IT HELP .after my walk i feel sick for 30 minute or so . but i want to go back to work ,

Kyle, if possible, in addition to the ENT, you might want to see a Neuro to be worked up for MAV. I have MAV, and only rarely do I get spinning vertigo. Mine is more like a floaty feeling, feeling pulled to one side, and walking like I'm drunk. I do get one sided facial/neck pain and pressure as well as tinnitus, but not everyone will have the other migraine signs with MAV.

Whatever your diagnosis, I will say that it is very common to feel worse when out in open, busy places. In the past, I've had drs tell me it was anxiety. I now know that it was/is a vestibular, eye, and brain issue. If you have something that is affecting your vestibular system, the eyes and brain must compensate. My vestibular therapist and Neuro both explained that this becomes more challenging in open, busy environments. One exercise I do to help with this is to look straight ahead at a point on the wall several feet in front of you. Walking towards it, turn the head to the left and right over and over, all while keeping eyes focused on that same spot. You're supposed to do it just until you start to feel a little dizzy, then stop. I am to do this every day, until no dizziness. Then I am to start it in busier and busier environments. It is one thing that has worked for me. I also take migraine preventative meds, and avoid migraine food triggers. I am doing well now, but the rain season is historically bad for me. I was also determined to have a TMJ issue, and physical therapy greatly improved my pain and dizziness.

Good luck!

Hi Kyle

I'm also currently experiencing the same for almost 3 weeks now, it also came out of nowhere of July 22, 2016 @10 AM after I took a bath and 15 minutes later I feel this slight swing and I knew something is not right, I thought it's just a headache but it never left me since then, been taking SERC 16 mg then the Dr. increased dosage to 24 mg, whenever I have attack I took 1 tablet and it would seems the swinging feelings seems to subside but not totally gone, mine is not the room spinning but like yours its just dizzy rocky feeling as if you are a little bit hang over.

I have also notice my right ear 'popping' when I lie down upon breathing in and out. And some loud clicking/snapping what feels like behind my nose - not very often but usually when I lie down to go to sleep.

Hello Kyle16160,

Your symptoms are what I went through and similar visits to my doctor, didn't do the MRI, did a CT Scan. Went to the ENT Specialist and all the results came back normal. Went to my Dentist who introduced me to his brother (a retired Doctor) and was told about Vestibular Disorder.

I did my research, went on YouTube and did the exercises. I feel 95% better to where I was two months ago.

Some days I still feel a little rocky and off balance, but the dizziness is not there anymore.

I also started doing Yoga, which helps me to relax and practice breathing. This helped me a lot with the dizzy spells.

Hope this can help you somewhat.

Hi Kyle your symptoms sound very similar to mine, mine also came out of the blue although I had been looking after my grandson who had had chicken pox although the doctors would not be drawn on this I have seen an Ent specialist who diagnosed me as having vestibular neuritis like you I only get relief when I am laying down  it is bearable most days but some days I have to lay down I also have had an mri and was given excersises to do but don't feel that they made any difference. My specialist has said it will go eventually and it is better than it was at the beginning I was in bed for two months and feeling my way round holding on to the walls when I got up but it's been 19 months since it started can't remember what it feels like to have a clear head I sincerely hope you will feel better soon

Saw an ENT consultant today. Couldn't point to anything envious - recommended some proper inner ear/balance tests - but thought probably anxiety! Amazed it can cause you to be so disorientated!

i have the same problem its been like that for the past 3 months but has some what got better i havent had a actual room spinning episode in like 2 and a half months but the feeling like i am on a boat or like my body is swaying is still there but more at night when i go to bed or if i am really tired like now, but i also have itchy ears as a symptom and i have noticed a few times well i was taking a shower if i stuck a wet finger in my ear its bad through out the day i really wish there was something i can do to make it all go away it has taken my anxiety to a new level has made me really depressed, but know you are not alone in all this. 

hello Kyle, have you figured out what the problem is yet or solved it. Cause for lightheadedness started this year and its been going on for around about 10 months now and its been horrible and i've tried so many different options and they legit can't find the problem. 

Thanks Ross,

HI Kyle16160 ,I have same situation like yours...all the test that they,veg performed came out normal...I,m still waiting for my MRI appointment.I hope I get it soon..I hope that you can help me find the answers I need...I'm still wandering what is wrong with me....thank you.

Has anyone figured out what is wrong with them? I have had the same symptoms for 8 months now, dizziness (not spinning), headaches, trouble breathing sometimes, my eyes cant focus on one thing, nausea. I have been to an ENT, gotten a CT scan, hearing test, blood drawn, and im on the hunt for specialists in my area. I am 18 years old and this is having a huge impact on my social life, I had to drop out of college because I cant be on a computer for long and classes are via zoom, I am barely able to work and am just barely making my monthly car payments for a car I cant drive due to this. I am getting very depressed because every time the doctor thinks it could be something I get my hopes up and the results come back negative so then we go back to stage one. If anyone can please share their experience with me and what helped them that would be amazing. Im getting to the point of giving up. I cant take this anymore.