I’ve been brainstorming about what could have accelerated the progression of my symptoms. I had a tonsillectomy during my childhood, but didn’t have symptoms until 2 years ago (I’m 26 now). In hindsight, I may have had some mild symptoms since my teens, but nothing disabling. I’ve read that root canals can be a trigger - I hadn’t had one until over a year after the onset of my symptoms, but it definitely made things worse:(
I honestly think my progression started after a high ear piercing (a helix) on my symptomatic side. Beginning within 24-48hrs after the piercing, I saw a sustained drop of about 10-15bpm in my resting heart rate (I had been wearing a Fitbit for years at this point so I had a good idea of what it had always been). I’ll attach the graph from my Fitbit at the end. Within a few months, I was having progressively worsening headaches, and it was all downhill from there. I now have a list of 20+ symptoms (see my first post).
Has anyone else experienced something like this? I’m wondering if it has something to do with the healing process from the piercing (it takes 6-12 months for a helix to fully heal). My jugular vein compression is worse on the side that I had pierced, and my styloid looks longer and thicker on that side. I mostly only have symptoms on that side despite my other side looking pretty rough too.
That’s really interesting, I don’t think we’ve had anyone mention this before! I don’t know much about helix piercing at all, but from a quick read, it sounds as if more pressure is needed that normal ear lobe piercing, so I wonder if maybe you were a bit tense or had your head at an awkward angle & this could’ve aggravated the styloids? Otherwise maybe it’s a nerve flare thing , perhaps as ES can cause inflammation and if the vagus nerve is irritated by the styloids this can cause a heightened nervous system response (heart rate or BP spikes), maybe having the piercing aggravated that? This is pure guess work only!
Yes definitely more pressure - it took multiple attempts from the piercer, and he said that my cartilage was the thickest he had ever pierced lol. I thought that was kind of odd because my joints are hypermobile, but I guess my cartilage is quite stiff. I’m sure I was tense also because it was my only piercing so I was nervous.
I know it may be a coincidence but it correlates perfectly with the onset of my symptoms, and I know that my body can be weird about healing sometimes, because my pelvis was full of scar tissue from ovarian cysts before I even developed endometriosis. I’m have a list of questions to ask Dr Costantino regarding scar tissue/healing if he offers me surgery
@carina - There are things that can be done during vES surgery to help protect the IJV from getting recompressed by scar tissue during healing. One of those is to wrap the IJV in surgical grade sheep tissue to reinforce it & help it not be as easily squashed. I don’t know what Dr. Costantino does or if he does anything like that, but it’s sure worthwhile asking him.
Your situation w/ the ear piercing is interesting to say the least. I like the explanation @Jules provided as it makes sense, but we aren’t doctors, as you know so we can only speculate about the causes of unusual responses to things that seem pretty normal.
This is a good point, I will ask him if he could potentially use any sort of barrier if he thinks it’s necessary. I have many stem cell barriers that were surgically placed between my organs in my pelvis because they were all frozen by scar tissue from my endometriosis, so I know that those ones seem to work ok for me. Thanks for the idea!
