Hi, I’m sorry this is so long
I found this community through a search of my symptoms and are seeing people have similar strange symptoms.
I have had on and off “dizziness” for year. It comes and goes. My most recent episode started 2 weeks after COVID and has been the worst one yet.
After COVID I started getting bad headaches. Then I started getting pain isolated in the left temple. Here’s a list of my bizzare symptoms
pain and pressure in left temple pretty constantly.
floaty off balance feeling
pain and high pitched ringing in both ears more so in the left
constant twitching in left lower eyelid ( this actually has subsided)
feeling like I’m walking tilted to the left
feeling like I’m walking in potholes
feeling like my right leg is going to give out under me while walking
feeling like someone’s pushing me down into the ground when walking
irritating when nodding up and down
nauseous all the time
slept on the wrong pillow the other night and a noticeable difference when moving head up and down causing off balance wierd feelings
I have been dealing with this for almost 9 months now and I’m literally going insane
When I go to the Dr they think I’m anxious or just depressed I think because I can’t stop crying to tell them my symptoms
I’ve had an MRI in 2019 and nothing. I have had vng/caloric/ rotational chair testing but don’t know the outcome. I’m too scared they will tell me nothing is wrong and I’m at square one
Amytriptlyine helped but not any more
Taking 3-4 Advil a day seems to keep symptoms at bay but the past few days it’s not helping
I am so sick of this constant pain in my left temple. I need answers. It’s hard to go to work, to do anything really. I’m on edge and stressed cuz of this all the time and think I have a fregon brain tumor.
I go over my own MRI obsessively trying to see if they have missed something, anything to explain these symptoms.
I’ve been diagnosed with vestibular migraine for now, and another doc thought possible tmj& migraine in 2019. Waiting on the current testing.
Does anyone have any ideas. Does any of this sound/fit in any box
I’ve had my teeth checked, my eyes checked, my hearing checked, been to an ENT, neurologist, and no explanation
Hey Jessica, welcome to the board! Sorry to hear you are suffering. No need to apologise about length: get it off your chest. You are in the right place and everyone here is very friendly.
I am no doctor, and I encourage you to follow up with one, but the symptoms you describe certainly sound like you are on the migraine spectrum, with vestibular migraines to boot.
Many folks here who have had COVID-19 report an exacerbation and change/addition in symptoms following infection.
Everyone is different - some find medications that work while others (I’m in this category) are left with nothing but our own good humour and tricks & tips that help us.
This board is a wonderful source of information, support, and community.
If it helps ease your mind i have vestibular migraine and all the tests i had were normal. That’s typical with migraine, it doesn’t show up on any test. Just cause your tests haven’t found anything doesn’t mean there’s nothing wrong. Migraine can have other symptoms such as light sensitivity, sound sensitivity, ear fullness, changes in body temperature, changes in mood like anxiety , sadness, irritability or euphoria, so if you have any of those it can help with the migraine diagnosis but you don’t have to have those symptoms, not everyone does. If your MRI was fine then you don’t need to worry about a brain tumour. You’ve had all the right tests done, and if you’re seeing a neurologist then you’re in the right place. Try to stop obsessing over it, i know how awful and debilitating it is but you are on the right path doing all you can for now. Stress makes migraine worse so try to relax and let things unfold in their own time.
Your story sounds very familiar to a lot of us here. I particularly relate to crying everyday unable to talk.
9 months is long enough to deal with this without a real plan forward so that’s your first step - get an action plan.
you need to see an neuro-otologist - someone who specialises in this very thing. Where are you based?
you’ve had the right tests but didn’t find out results. You must! Don’t be scared of not finding something. You might actually get some answers too.
medication is your best bet. There are numerous options and what works for one might not suit another. Start trialling so give you the best chance of improving
having a clear MRI is normal for us here. Put that away.
with the right approach you’ll feel better. This will be fast tracked if you find a way to manage your anxiety. Lots of tips on here if you search for them.
Settle in and read up. You might find something that helps. X
Thank you everyone for your responses. I just found out my rotational/ear studies were all normal. Which is great but not at the same time. Because it still leaves me without a clear cut answer.
The amytriptlyine is no longer helping so I will have to try another medication. I am just so sick of this temple pain. It’s getting so bad Advil is no longer helping either and it’s just constant. It actually kept me awake last night. And I noticed it immediately when waking up.
I just don’t understand how you can have a migraine every single day like this. How is that possible?. I have read about a shot people have had great success with. Is this for vestibular migraine or just regular migraine?
Other things; could it be neck or tmj? I’ve noticed some serious issues with my neck lately. A lot of cracking and pain in the back and front of the neck.
I’ve asked my Dr for a neck MRI and brain. The last MRI I had of the brain was in 2019. That’s 3 years ago. Maybe something has changed? I just have trouble accepting VM until all tests have been completed.
I just want to feel normal! I’m so sick of feeling like this every day. I am worried I will have to take a leave of absence from work soon if I can’t get a handle on it.
Thank you all for your kind words and support. I’m sick of feeling like a crazy person all the time with these wierd symptoms.
