Is this even a migraine?
I'm not even sure what this is. I've had migraines since 2015 after the birth of my son. Over the last few years I was headache free. Flash forward to this year. In January I started experiencing a floating/dizzy feeling. Along with it I had:
Left side of face burny/tinlgy sensation (doesn't hurt just irritating)
Left eye feels like it's watering
Left side of mouth feels like its drooling
Weird fuzzy area in my lower left field of vision
Fatigue (though not everyday)
Headaches almost daily but nothing that hurts so bad I can't live life
Left ear will feel physical pain with certain high pitch, unexpected sounds
I've seen a neurologist, neuro ophthalmologist, ophthalmologist, optometrist, GP, ENT, and dentist. No one has offered any insight as to what this might be. In fact, after 5 MRI's with contrast, a sinus CT scan, all the eye tests possible, all the hearing/vestibular tests possible the only thing I know is that I'm perfectly fine. Except... I'm not.
The only relief I experienced is when I started wearing a night guard religiously and it's not long lived relief. This led me to believe there was something wrong with my TMJ joint or that I was compressing a nerve with my constant jaw clinching. The dentist looked at me crazy when I brought it up.
Does anyone have any idea where I can go to figure out what is wrong?
- I am so sorry to hear that you are going through such a difficult time. It sounds like you've been put through the wringer when it comes to doctors, guidance, diagnosis, and treatment. I think that the last thing you'd want to do is see another, but seeing as we can only give you our experience, as we are not doctors, we can recommend you do research in areas possibly causing issues and work in conjunction with a specialist.
Here is some information I can give you that may be helpful:
One thing I did want to ask is if you've been to see a headache specialist. As tough as it may be, the best thing I may suggest is to see an expert who treats migraine and headache disorders, not simply a neurologist. And here's why - neurologists may be fine doctors but have a difficult time being experts in one area. This is because they treat so many different conditions like MS, stroke, epilepsy along with many others. Migraine/headache disorder specialists are just that, experts in one area - migraine and headache - and have extra board certification in headache medicine whereas all neurologists do not. It's also important to note that all neurologists are NOT migraine/headache disorder specialists even though they may claim to be and all migraine/headache disorder specialists are not neurologists.
There is quite a bit of information on our site (or the internet) on the symptoms you are describing - which MAY liken them to trigeminal neuralgia or even maybe hemiplegic migraines. Here are some links to research and takeaway information for use in conjunction with a headache/migraine specialist to help you.
https://migraine.com/living-migraine/hemiplegic-awareness
https://migrainemeanderings.com/trigeminal-neuralgia-facial-pain?gclid=Cj0KCQjwmZejBhC_ARIsAGhCqnfVmB8TvHFBj_tqErfHx73S1mO5gLFBE_RgkAyWOjp3ArqG6v-L7oUaAkMNEALw_wcB
https://migraine.com/living-migraine/trigeminal-nerve
https://migrainemeanderings.com/migraine-symptoms-numbness-paralysis-pins-and-needles
I wish you well as you travel this journey to diagnosis, hoping for a resolution in troubling symptoms and better health overall. Hopefully, others on our site will chime in soon and offer up their experiences as well as offer a little hope and information to aid you in diagnosis and treatment. Warmly ~ Rebecca (Community moderator)
