This post was flagged by the community and is temporarily hidden.
So sorry that you’ve had a big flare up- it’s weird; at times you can pinpoint what you’ve done to trigger worsening symptoms, other times they just happen…for me having my neck turned for long could, cycling affected it, & also things like if I had any other virus or infection, it made ES symptoms worse. Diet can cause inflammation, worth trying an anti-inflammatory diet maybe. As for sleeping position, everyone’s different, but sleeping semi-upright does seem to help quite alot of people. I used a wedge pillow & a V shaped orthopaedic pillow which helped.
Nerve pain can be helped by certain antidepressant or anticonvulsant medication; like Carbamazepine, Gabapentin, Amitriptyline. How long have you been on Lyrica? If a while it’s worth trying something different, they can take a few weeks to build up enough to help though. There’s more info in the Newbies Guide Section about that. Some people have found that the steroid/ lidocaine injections into the area can help, although not always- might be worth a try.
Most people find pushing on the styloid from inside their mouth really ups the symptoms, so I wouldn’t do that again if I were you! It can be snapped too which could cause even more pain…
Have you seen the Doctors list; sounds like you’re not getting very far with getting help? Here’s a link:
If travelling’s not an option, I’d suggest trying a skull base surgeon/ otolaryngologist, a head & neck cancer surgeon or a neurovascular surgeon who specializes in the head & neck area.
I hope that things settle down for you really soon, thinking of you & sending you a hug…
The Irish health system isn’t great
Covid has delayed many non essential appointments, and the surgeon who specialises in Eagles has retired from public duty, only private.
One consultation is €250.
And due to a smashed femur and one year off, learning to walk again meant cut backs, and our medical insurance was unfortunately cancelled.
So I wait for a surgeon in Limerick, who has treated Eagles before, to write to me with an appointment.
Getting diagnosed is so difficult.
One of my Gp’s refused to put his finger in my mouth to feel the styloid.
He said he would write to a ENT specialist (last visit he sent me to the dentist, who removed nearly all my teeth on the right upper jaw.)
I found out two weeks later, that he went over my file and thought that I was delusion, and never sent a letter, delaying the process even more.
I will call the GP tomorrow and talk about pain management.
That is all they are fit for, hand out pills like they were smarties.
Thanks for your reply.
I have had a read of some stories today on this here, it is nice to know that I am not going insane.
Sleep beckons me and I must go.
Amytriplene? Has hold of me
Whatever you do mate, don’t even think of trying to break off the styloid process by yourself. If you look at the skull diagram, you will realize you might very likely end up with damaging the temporal bone at the place where the styloid process connects the bone. I’m not a doctor, but I guess the consequences might be from damaging your inner ear and losing hearing with that ear to damaging your brain. And that’s assuming that the broken styloid won’t cut/pierce the arteries/veins and cause rapid internal bleeding. So better don’t do it.