Hello! I’m new here but I wanted to share some of my symptoms or possible symptoms and see if anyone relates. I have been reading about other’s stories and I have found my symptoms seem less severe in the form of facial and ear pain. I grind and clench my teeth 24/7, partially because of anxiety however I have to wear mouth guards because of this. I get occasional stabbing pain in my ears, jaw, or throat, but it is not debilitating. I get tinnitus and I do have trouble swallowing (I believe I have gerd, though it’s not bad except for the pain aspect). My neck area has always been tight and sore. Sometimes my neck will get locked when I stretch it as well. I’d say my worst symptoms are chronic migraines and headaches and syncope. However, the syncope could be due to extremely low blood volume from chronic dehydration. My syncope attacks felt as if my body was a soda can, and I had jerky seizure like movements. My face also started burning right before it happened. The weirdest thing is this only occurred when I was sitting down, when I had done nothing. However, I do think it had partly to do with my heart rate because I could sometimes calm my heart down with deep breaths and avoid most of the attack. I still get dizzy or my heart starts racing (especially if I’m lifting or doing a physical activity) but I’m hoping that building up my blood volume is the proper treatment. If you’re curious why I was so dehydrated, I took adhd medication that repressed my appetite and I didn’t think much of drinking a few mouthfuls a day. I wasn’t aware before today that syncope could be part of ES which makes me a little worried that some of it was not caused by dehydration.
Vagus nerve irritation from the styloids can also cause heart arrythmias, just thought I’d throw that in to the mix! Migraines are a common symptom, there have been quite a few discussions about this which you could use the search function for.
I think as surgery is a big decision, and not without risk, you’re wise not to rush into it, so if you can keep yourself hydrated & see if you have any more episodes then that’s not a bad thing… If it doesn’t stop the fainting, then I’d suggest that you get a CT with contrast, as it could be that your carotid artery is being compressed or irritated, that is something you could be looking into in the meantime otherwise, if you have a doctor who could refer you for this?
I will definitely monitor this then! I could probably ask the tmj specialist I’m seeing if he’s worried or if he knows anyone!
@Jules mentioned that the vagus nerve can cause heart arrhythmias, but it can also cause gastrointestinal problems so what you think may be GERD could just be your vagus is irritated.
I had a very similar heart/dizziness problem when I exercised - heart would race & I would get very dizzy. I finally figured out what was happening was my blood pressure was dropping instead of elevating w/ exercise so my brain wasn’t getting enough oxygen thus my heart would race to increase the blood flow to my brain which would make me dizzy. I fully believe that was also a vagal response. I know my vagus nerve was irritated by my elongated styloids, & once they were gone, the crazy heart rate & dizziness when I exercised stopped. I’ve been pretty good at staying hydrated when I exercise but that didn’t start w/o a lot of prompting from coaches & trainers I’ve known over the year. I now try to drink 70-90 oz of non-surgary, non-carbinated, minimal caffeine fluid/day. I feel my best when I consistently get 90 oz in but 70 is more my norm.
I have similar neck, jaw pain and have ehlers danlos syndrome - hyper mobile type. Also GERD many of the others things you speak of. Was diagnosed with dystonia in my neck/jaw and get regular botox to real the neck/jaw and temples. You speak of low blood volume and syncope. Sounds like you may have POTS (Postural Orthostatic Tachycardia Syndrome). My daughter has it and was tested and found to have 30% deficit in her total blood volume. She gets weekly saline infusion to boost her blood volume. The vagus nerve issues can come with ES however you mentioning worsening symptoms with heat and exercise. These can be classic POTS. Often POTS is diagnosed as anxiety instead. It is not, it is the heart racing.
PCP can do some simple blood pressure / heart rate monitoring to see if you fall into this realm. First take heart rate and BP after lying down 10 minutes, then after 10 minutes sitting upright, then after 10 minutes standing. If your heart rate jumps more than 30BPM standing, you are falling into POTS territory. Often they don’t want to do the first two more than 3 minutes. The important thing is what happens when you stand.
Might want to consider salt tablets?
Its worth checking out. Hope that helps
Thank you so much for the advice! I will keep that in mind for my next appointment. I did find someone else who treats ES in Kansas City and I have a consult later this month. I will let you guys know how it goes.