New Guy here

Hello everyone,

I am new to this forum and I was looking for a little feedback to help me try and finally get a diagnosis for what is going on with me.

Quick back story, 6 months ago I returned from a long flight feeling a little off. It was mainly just a jet lag feeling but the next day at work I had trouble focusing on my computer screen and had a brief moment where I was walking and everything went black and I thought I was going to pass out. That lasted about three seconds and then I was fine. For the next 10 days I felt fine but still had trouble with the computer screens and fluorescent lights. Then one morning i woke up and felt off balance. I could still walk and fuction but it felt like I was swaying from side to side and that I was falling backwards when I walked. It wasn’t 24/7, just eposides like a force was pulling me. I waited a few days for it to go away until one afternoon I was in line at a soup place and I experienced true vertigo. I went to the ER where they did a CT and Chest scans, blood work and neuro testing. They were all clear and sent me off with Dehydration. I rested for a week and started to feel better. A week later I had no symptoms, but then the loss of focus came back with brain fog. I did the doctor tour and got tested for lyme, B12, thyroid, blood sugar, blood pressure, calcium all of that stuff, all normal. I then saw a cardiologist, two ENT’s and a Neurologist. I had an ENG, Sonogram of my heart, MRI, Hearing test and all normal. I started feeling better again for the next few months and my symptoms improved.

However, I still feel off. My symptoms now are

trouble focusing on computer screen and in bright and dark lighting
Feel unsteady when standing still
Jittery/anxiety
Occasionally true vertigo with visual stimulation
Occasional feeling of unsteadiness when walking.

I h must say that all these symptoms are mild. I can walk, run, workout and pretty much do everything I normally did, It just feels off. I have had no other symptoms, no headaches, nausea, muscle weakness or twitching. I do feel better than I did 6 months ago and no doctor can find anything wrong with me. Does this sound like it could be MAV? I am seeing a Neuro-otoligst on Monday and I want to bring this up.

Thank you

Deekon

Sure could.

Thanks David. Did you ever get lightheaded from it and feel like you might faint? that’ keeps happening to me.

Hi Deekon,
lighheadedness is my biggest problem. I am always lightheaded in the morning, and this starts about 40 minutes after waking up and then it lasts until about midmorning. Taking a small amount of Clonazepam has helped me with this. It is a horrible feeling - Lisa

Thanks Lisa, I am sorry you get this too. Mine only lasts a couple seconds and then I gain my balance. Eating something usually helps. What’s weird is I have been getting lightheaded at the same time of the day every day this week. Then I eat slowly start to feel better and then exercise at night at feel great. I am so all over the place with this. It only started 5 months ago out of the blue and it just comes and goes. No other symptoms though and it’s mild. I think my brain hates me. I tried to make amends by eating some cookies but nothing! Hope you feel better tomorrow

Deekon

if eating helps have you had your blood sugar levels checked?

Hi Deekon,

I agree, check your blood sugar levels, get a glucometer from the chemist. You may have Reactive Hypoglycemia. I have it.
Symptoms can be shivery cold, or pouring sweat (especially if you eat after the bs levels have been low), feeling feint, wobbly weak legs, black haze, shaky, dizzy. Mornings are generally worse. Your BS should drop slowly to base level after eating (base level is morning level without eating or drinking) over 3 or so hours. With me, when I first eat, it goes up, then shoots down below base level within three quarters of an hour, thats when I get the symptoms.

Christine

Thanks guys, I have had blood sugar checking and everytime it’s normal. I may be on the wrong board because I don’t really know if I have MAV, but my symptoms are similar to a vestibular migraine. I have never actually had a headache, and only very brief moments of someone true vertigo. I have two different symtpoms. One is where I just feel off balance and anxious. I can’t seem to stablize my feet. I don’t fall anything, in fact my coordination is fine. It just feels like I had too much coffee. The only symptom is when I can’t focus my eyes and when I walk into a place with a lot of visual stimulation, it starts spinning and I feel like I could faint. It’s very brief and passes. It also only happens when I am standing still, like in line for something or in big stores. It also doesn’t happen all the time and hasn’t been prevented me from doing anything. I just feel terrible doing it. Most of the time I feel fine, at home I feel fine, outside fine. It’s really weird and docs can’t find anything. I am seeing another neuro-otolgist on Monday and maybe I can get some answers. I’ll take any diagnoisis at this point. If this doc can’t see any vestibular issues, I will go back and look at blood sugar… again! But thanks for taking the time to talk about this, no one understands and they think I am crazy.

Deek

Deek,
is sure sounds like it could be migraine related. When I first got my diagnosis I thought it was a bunch of bull, since I had never had a headache in my life. But the underlying hypersensitivity of the brain is what causes these problems…I believe. The meds for most any of these conditions are similiar. Whether it’s true MAV, or migraine or anxiety, I think it comes from some suspect brain wiring/chemical stuff that causes different symptoms in all of us, with a lot of them being
similar…if that makes sense.
Good luck to you.
This site is a great place to get educated, meet caring people, and know you aren’t alone.
Kelley

Hi Deekon,
I’m new too, but have found this a very welcoming place. I hope your appointment goes well on Monday and come back and let us know your diagnosis. Good luck.

I sure will let you know what I find out on Monday. I seem to have a little bit of everything, some MAV symptoms, some Mdds, some anxiety, some inner ear. It could really be anything. All I know is that I don’t feel like I used to. But it’s nice to have a place to talk. I’ll keep you posted.

— Begin quote from “Deekon”

Thanks David. Did you ever get lightheaded from it and feel like you might faint? that’ keeps happening to me.

— End quote

Dizzy and out of it is more my take. And, when really stressed–at least whilst I was still using caffeine–spacing out entirely.

Thanks all, again I am undiagnosed, but today was bad. I woke up and felt fine. I went for a run and then went out to run my errands for the day. I felt a little off but nothing too terrible. I walk into a Duane Reade and almost faint. I was very shaky, couldn’t focus and anxious. I swear I almost went to the ER. Thinking I might be hypoglycemic I ate something and continued to walk around. I felt a little better in a couple stores I went to but not great. Then I went into a BuyBuy baby to get a gift for my brother’s wife’s baby shower and boom I had to hold the counter to brace myself. I walked home in an anxious panic laid down and now I feel better. I just went into another store and felt better. Again I have no idea what’s going on with me. It might be all anxiety, or blood sugar. It might be something vestibular. I can make cases for both. Sorry for the rant. I will let you know what my doc says on Monday. I just feel so helpless sometimes.

Hey Deekon,

Don’t give up hope…I suffer mostly from the dizziness aspect of the MAV rather than the migraine part. I do have headaches all of the time, but they are so often that I don’t even notice them now. What bothers me the most tho is the constant uneasiness. When you walk and take steps you seem off balance and also when you walk into smaller spaces, like feeling like you are going to faint up at a counter when ordering a coffee or something. Yea, it happens. I don’t know why but I think MAV does have a definite anxiety side. I wish doctors could somehow diagnose this better…it seems to go right under the radar and get totally overlooked. I feel like I suffer from something that doesn’t exist.

Keep your head up tho…it will get better, just know that nothing really serious will happen to you…it’s just an uncomfortable feeling that will pass.

Ryan

Hi Deekon and welcome,

  1. You don’t need to have headache to be a migraineur (I rarely do)
  2. Great that you have had heaps of tests (i.e. rule out other nasty things)
  3. Great that you are seeing a neurotologist
  4. Do you have any family history of migraine? Could help with diagnosis
  5. I have reactive hypoglycemia and it can aggravate migraine symptoms and also feels very similar to migraine symptoms (shaky, jittery, confused, panicky etc) - I try and carry food (like museli/fruit bars) with me so I don’t get caught unawares and also eat regularly.

Good luck at the doctor’s tomorrow and keep us posted.

Vic