New diagnosis of ES in Toronto area

So sorry that it’s taken you so long to get a diagnosis! Sadly not uncommon here :unamused:
Your symptoms could all possibly be caused by ES- there’s more detailed info in the Newbies Guide Section about possible explanations if you’ve not seen it, & @Isaiah_40_31 found ‘2 minute Neuroscience’ clips on YouTube which details different cranial nerves, they’re helpful too.
The styloid length can definitely cause more symptoms, & if it continues to grow then it can bring the styloid into contact with different nerves &/ or blood vessels. Often the styloids grow at an angle too, so this can cause them to poke & irritate the nerves. Symptoms can worsen as we age too- it’s thought that as the connective tissue weakens with age iy can be enough to shift the styloid’s position enough to increase symptoms. The neck is a very cramped space with many nerves & blood vessels, so even a millimetre or two shift can be enough to irritate nerves.
Some members have had symptoms one side only even with elongated styloids bilaterally. But after surgery it can sometimes cause the other side to play up & it seems to be quite common for this to happen.
There’s info again in the Newbies Guide Section about pain relief options- basically ice or heat can help, there are nerve pain meds like Gabapention, Amitriptyline or Carbamazepine (which could well be worth trying for the zaps of pain you experience). Muscle relaxers like Baclofen sometimes help, & some members have been able to get Lidocaine patches too. A doctor can do a Lidocaine/ steroid injection into the area, this has mixed results, but could be worth trying if you have a long wait for surgery… Sleeping propped up a bit can help too. There have been some discussions about seeing chiropractors or physiotherapy- it has helped some people but you need to be very careful as it could make the pain worse & cause alot of damage if someone doesn’t have experience with ES.
Barometric pressure definitely alters symptoms- again it’s been mentioned in past discussions so you could search for that.
If you think you may have vascular ES- & fainting is possibly an indication that it could be, then a CT with contrast should show if blood vessels are compressed, especially if you could get a CT done with your head in the position which caused you to faint.
The surgery isn’t a walk in the park, but is usually successful- most members go through surgery twice to get both sides done, so that should tell you it’s worth getting done! I had mine both removed a year apart & the surgery wasn’t as bad as I thought, the results have been really good for me as I was feeling very ill with bilateral jugular compression.
I hope this helps, & maybe have a read of this topic:
Surgery for Eagles is usually successful! - General - Living with Eagle

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