Is this even a migraine?
I feel desperate at this point.
I started experiencing migraines in 2015 and went many years without an episode. In January of this year I started experiencing a floating feeling, fullness in my ears, a weird tingly sensation on the left side of my face (to the point I would check the mirror 100's of times a day to see if I had bells palsy), and even the sensation that my eye was watering and mouth was drooling on the left side. I even get physical pain in my left ear with certain sounds.
I have headaches almost daily but nothing that keeps me from living life. Mostly its a constant dull pain that never seems to go away. Occasionally it can get painful.
I've seen: an ophthalmologist, a neuro ophthamologist, a neurologist, ENT doctors, my GP, and my dentist with no help. I've had 5 MRI's with contrast since 2015 and let me tell you, my brain is fine. My eyes are fine, my hearing...excellent.
I'm at a loss of where to even go at this point. Any suggestions?
Hi. My heart goes out to you, it's scary and frustrating to have these weird symptoms and not know why.
Of course, I am not an expert and can't give you medical advice for your own safety. That said, I do wonder if hemiplegic migraine might line up with what you're going through. It can often mimic the symptoms of a stroke and can involve eye and ear symptoms.
Here's a link to our archives, where you can see a lot of the articles and past discussions we've had about it:https://migraine.com/search?s=hemiplegic%20migraine
Whenever possible, we encourage our members to work with a headache or migraine specialist. These doctors are different from neurologists, who often have a broad focus on many conditions (including migraine). Headache specialists can be neurologists, but they focus on treating headache disorders and have additional training. If there's not one near you, you may be able to have a consultation via telehealth, or they can consult with your existing medical team.
Here are two directories for headache specialists:https://americanmigrainefoundation.org/find-a-doctor/
https://headaches.org/resources/healthcare-provider-finder/
Let me know what you think about all this, okay? We're here to brainstorm with you and support you. I hope you can get some answers soon! -Melissa, migraine.com team
Thanks for the information. I did get referred to a neuro ent to check out the weird ear stuff. I’m waiting for him to review my case and see if he will take me or refer me out to someone else.
Where is that dr house and staff when you need them. Lol
Glad to hear that you potentially have a referral to the neuro/ENT doctor. I can understand why you would feel stumped with this combination of symptoms, and I hope that someone helps you find some answers soon. Try not to give up in your search until you get to the bottom of it! You deserve some answers 😀.
Warmly, - Cody (Team Member)
How long are you having to wait for this appointment? And how have you been faring in the past week? Thinking of you- Holly (migraine.com team).
I still feel very dizzy/floaty and I’ve had a consistent dull headache for a long time now that hasn’t gone away. I have a virtual appointment with the headache institute today. I am hoping that they can either confirm I am having migraine related issues, or inform me of who would be best to talk to.
Okay- thanks for letting us know. So glad you have an appointment today. If you have time to let us know how it goes, we would love to hear. Really hoping you get some good and helpful information today. We are thinking of you. Warmly- Holly -migraine.com team.
Hi
- I'm really sorry you are going through this. I see labels on your post that say cluster headache which is a different primary headache disease than migraine. I have both and they are quite different, but as I read your post, I'm wondering if you've heard of the trigeminal nerve? I wrote an article explaining it's link to migraine & cluster headache and I also have trigeminal neuralgia. I hope your appointment goes well - being able to explain to the doctor about how long the episodes last (if there are escalations) or if it's pretty constant what all symptoms you get like you expressed in your post. After your appointment if you are up to it, update us - I hope your doctor listens well. https://migraine.com/living-migraine/trigeminal-nerve - Anna (Migraine.com Team)
