Do i have mav?

To all who doesnt want to read full story i will list the symptoms.

Laying down and getting up, head feels like there is some kind of rush and gets dizzy. Cant really explain it. Feels like maybe blood going back into the head after standing up and get dizzy for brief monent. It feels like its the back of the head. Feel dizzy after getting up and looking up and feel rocking sensation and feel like i wanna fall backwards. I am actually doing this right now to explain how it feels cant explain it. Tends to be more tense when i look up. Feels like tension on the back of the head and fluid. Could be electric zaps and my jaw vibrates when i look up after standing up and it feels like my ear feels muffled when i do and doesnt do inmediatelt. Its few sec later when i get up. More tenseful when i close my eyes and do it. I did this about 5 times in a row now to give accurate info as possible.

Balance. Sometimes walking and doesnt feel like im walking straight but wobbly.

Sesnsitive to light. I always had this after panic attack around 12 years ago.

Super super sensitive to sound like dishes, sometimes normal voice but sometimes the same noise doesnt bother me.

Sometines feel pressure on top of my nose and forehead. Sometimes my whole head like wearing a hat.

See flashes on the side of my eyes when the light goes out.

Trying to sleep and constant rocking sensation or wobbly sensation but stops when i open my eyes. Most of it at night. Cant sleep without xanex

Cant sleep at night. When about to fall asleep either falling sensation or zap wakes me up everytime.

Top of the temple pulsinates.

Right ear pulsinates when laying down sometimes.

Use to have ear fullness but seems like its gone but sonetimes have cracking sound.

Sometimes hear a gentel ringing in the living room but disappears if i go to another room

   I guess i should have started with this post as my first post on this forum instead of the other posts i have made and been reading here alot lately.

I am 37 and around mid September of this year (sudden weather change) i was playing a computer game in the morning before work (my normal routine). Then all of a sudden i got dizzy like spinning sensation and i had to drop to the floor to regain balance but it was for couple sec. i shrugged it off and tried to pla again but started to get nauseas little bit looking at the computer screen.

Few days later i went to a clinic and the doc said my ear was little red so she gave me antibiotics for 10 days and did some blood work. I adked to do chlosterol as well. Results came back and i had high chlestrol at like 270. I believe during that phase i was having balance issues? Like a drunk feeling when you are walking and you sort of tilt to the side. It wasnt all the time but i knew i wasnt 100%.

On the 10th day on my antibiotics(last day) i went to a same clinic but different location. The doc was reading over the notes of the 1st doc that i met. Original notes saids red and bulging whatt?? Whatever happen to little redness? The new doc saids ears look fine and gave me nasacort for sinus to clear whatever for the ears and also did the epiley manuever but no sign of crytals in the ear.

About 5 days later i went to a different clinic hoping for answers. He thought the same as he thought i had crytals maybe and gave me Meclizine for dizziness and referred me to an ent doc. It felt great being on meclizine, it would make me sleep for hours. Then one night i woke up middle of the night And my left arm was numb. I guess i slept on the arm to go dead. I stood up and waited for the blood to come back to my arm and when it did, i got dizzy suddenly for a sec. I was still drowsy from meclizine so i went back to bed.

1st time meeting ent doc, we did some test. Epiley manuever again and she didnt think its crystals. Did some more test and sent me to go get a hearing test. Test came out fine and said my hearing is super good. Audiologist did say my left ear canal looked shiny and my one looked dull. Met up with ent doc again to talk about the results. She said my heaing looked good except right one wasnt as good the left. Now she mentions a ct scan for possible bone interupting the ear or something. I told her that my right ear feels full or pressured and told her that i have sensitivity to sound. She said my ear looked fine and did the ct scan. Then met up with her again to talk about ct scan result. She said my ear looks super healthy but i told her that i still have fullness and some pressure and to add some cracking sound now. She said my ear looks fine though. I think this is when she said something about vestibular migraine and calcium chamnel blockers. I was like whatt!?? I didnt know what that was. I brushed it off abd i went my way and thought maybe time will heal this.

After about week and a half later, my anxiety got to me and i checked into a ER for answers. I explained the ear fullness, some pressure, cracking sound. Super sensitive to sound like, staplers, dishes banging, some peoples voice etc. cDoc is saying the ear looks little inflamed so gave me ear drops for otitis externa and wanted me to follow up with the ent doc.

I get a phone call from the ent office asking if i wanna schedule? I guess they somehow found out about the ER visit. I schedule and meet up with the ent doc few days later. Again i explain to her about the ear. She checks the ear and saids its little inflamed. I was getting fed up with back and forth answers sayings its fine, no its inflamed, no its fine. Ent doc said i have debris on my ear and used a machine to suck it out. After that i believe my sensitive to sound got worse. She again mentioned vestibular migraine. I told her i dont have a headache or migraine. She clarified that migraine doesnt mean headaches, just a general term for your head or something and wanted me to go see a neurologist. She was helpful and i explained my anxiety and prescribed me xanex.

I schedule a appointment with an neurologist. I explained everything to him and he doesnt think its mav. To make it short, he prescribed me with notriplyne and wanted me on physical therapy and take a mri. I took the mri this past wednesday and no results yet. With my sound sensitivty, the sound that mri machine makes wasnt that bad with ear plugs.

Looking back at this span of 2 month, i think i had a headache or migraine like 2 or 3 times on the right side of my head.

Sorry to hear what you have been through. Everyone’s story is as winded a yours with many failed doctor visits. Vestibular migraine is a waste basket diagnosis involving ruling out other stuff. The CT scan was probaby for superior canal dehiscenece. The MRI to rule multiple sclerosis and vestibular neuroma. Try the notrpityline can help with symptom management. I am on Amitriptyline a sister drug to nirtriptyline and helps with symptom management.

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Thank you. I made a post about the notriptline how the doc got me on 25 mg as a starting dose and im anxious about it.

Start at 10. Do one week on 10. If all is well bump to 20 and stay there as long as you like. If you feel you can handle 25mg go for it.

Thank you. I will have a talk with the doc tomorrow

Are you sure this was a panic attack? Could this have been vestibular?

Im pretty sure it was a panic attack after smoking marijuana after not smoking for like 7 months. My heart was racing, couldnt breath, felt surge of adrenaline and anxious.

ah! that may explain it - interesting

I made a post (but flagged for deletion) and reread your opening post. I thought your entire symptoms for VM were brought on by a bout of marijuana, but I was mistaken. I was going to say an edible is what kickstarted / created my adventure of VM.

oh that’s very interesting too!

At a young age it must be particularly hard to injure the brain (the ear is sooooo much more exposed) but if you can upset brain chemistry enough I could imagine migraine threshold could be impacted. Could ONE bad experience with marijuana be enough though?! I can imagine chronic use of marijuana is very dangerous for the brain - I know a habitual user who ended up mid 40’s with motor neurone disease (I don’t know if there is a proven link though btw!!!) which killed him. Very tragic - he was one of the best skaters I’ve known and ended up in a wheelchair. AVOID MARIJUANA.

The edible was much much much much more than what I’m used to when I ever did smoke.
The prior time I had 1-2 puffs and was fine.

Yeah, that first night after taking it was incredibly scary. Instant vertigo for a good 6 hours or so. I felt shocks in my ears, felt like inflation of eyes, swelling of my tongue, throat, shocks in stomach and they all kept going back up and down from one organ like the stomach then back up to throat, mouth, eyes and ears.
I was crying a lot cause I was freaking out.
I drank so much water that night. It kept feeling like my throat was trying to close.
After I woke up after the 6 hour period about an hour later that’s when the dizziness still occurred. The titling walls-- the whole Shabam.

And you ate it, not smoked it? Sucking on something could impact ears. In fact people with fistula’s are told NOT to use straws for this very reason (and they mustn’t smoke).

That seems a very obvious connection, to be sure. There must be a link. Something which affects brain chemistry could also affect ear chemistry btw. The ear is a set of delicately balanced osmotic chambers.

In any case, poor you, that must have felt awful!

Correct, ate it. I rarely smoke before that. Roughly 5-6 times a year.

I did notice tho my ears (both) were hurting just days after this incident. Pinching sensation as noted in my story. And that’s when I started getting the leaking feeling I believe in both ears too. As of now I only get the leaking feeling really in my left ear (noted a couple weeks ago the leaking feeling occurred in my right ear too), which the neurologist noted that ear to be somewhat weak.

I really hope I come out of this being normal again because I surely miss chocolate and peanut butter and just then not being worried if I’ll have vertigo or the inflated head feeling/motion sensitive/imbalance.

Just wow, that’s quite a reaction. There HAS to be a reason?

You didn’t fall and hit your head, no physical trauma?

I’ve been leaking for 2.5 years and its only just coming to a near stop. My injury was a physical one though.

If somehow your inner ear pressure caused hydrops/fistula’s then maybe in time it will settle, but this can take a LONG TIME.

PS doesn’t look like you are the only one, there may be something to this:

Nope, didn’t hit my head.

There was a plane ride I had coming back from Washington state (west coast to east coast) in late March. It had 2 connectors. The last flight descending down back into CT my left ear (I think that ear) wouldn’t unblock for a good 2 seconds and I had vertigo mid flight. My first time ever having vertigo and it freaked me out badly. I thought we were going to crash. I was told by my mother that she takes Afrin before ascending and before descending to avoid any blockage issues.

There was a time I smoked 3 big hits in late April and had vertigo from it and imbalance, but I laid down and the vertigo stopped and I fell instantly asleep. I was a little bit off for the next couple of days (slightly imbalanced) but then fine soon thereafter, doctor said it was an ear infection supposedly.

Then I smoked mid May the 2 small puffs and felt good / was fine, then in the end of May I had that edible which was roughly 10-15mg which caused everything I’m dealing with to this day. Extremely too much for me and apparently I’m one of the people who are sensitive to marijuana.

And what’s funny is how everyone is like “you shouldn’t feel that way-- pot is harmless”. The neurologist told me otherwise but they don’t want that stuff getting out because it’d be harder to legalize it.

I always tell people now that marijuana is a drug like any other drug, some people may have side effects that are not of the norm. In this case, I picked that special lottery unfortunately.

Life is a lottery in general. Don’t feel bad about it. Let’s all move on and heal.

This is significant too.

And yes vertigo is freaky.

I havent smoked marijuana ever since after the panic attack 12 years ago. But indont think ihave headaches or migraine but some pressure on my top of my nose and forehead when i lay down and constant rocking sensation and electric zaps when im trying to sleep sometimes keeping me awake. When i take xanax, it calms everything down even with my arms little of trembling sensation and on the back of my head. Sometimes it feels like its because too much visual stimulation from my phone or other source of light and extreme stress but i dont think my head hurts or anything though. As im wrting this in the dark on my phone and when i close my eyes, i see flashes.