So my symptoms began…well actually since being here I’m not sure when a lot of them began.
Last July i reacted to fly spray with a cough and that’s when my globus started. It was horrendous as I also had a lot of catarrh. The catarrh has subsided but the globus remains, and I’ve been waiting for a referral to ENT since. Last week my throat blew up on one side and got really sore. Muscles, tendons all painful. Not a classic sore throat. That’s when I decided to poke my tonsils as i read that stones can cause similar pain. That’s when I felt a styloid poking through the wall of my throat!
So I suspect Eagle’s after a bit of Googling.
Today I got given some Gabapentin and an expedited referral.
What I would like to know before I speak to ENT is if a knitting needle- like projection in my tonsilar fossa can possibly be anything else? Is there any other bit of our anatomy that could be there? I’m struggling to see what, if anything. I’m guessing this is the place to ask!
Hi Rebeckett, & welcome to the site!
As far as I’m aware, there’s no other bone that could be pushing into your tonsil area. The best way to confirm ES is to get a CT of your head & neck- hopefully the consultant will agree to that for you.
We do know of one doctor in Wales who’s familiar with ES, Mr Cellan Thomas, University Hospital Wales, Heath, Cardiff (Max-Fac surgeon on Head & Neck Cancer team). If your CT does show ES then it would be a good idea to get referred to him if possible. Here’s a link to the Doctors List as well:
Doctors Familiar With ES Countries Outside US Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
There’s lots of info in the Newbies Guide Section, for example symptoms & possible explanations, which might help you see if there’s any other symptoms of ES you have. Here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
It’s a good idea to get as informed as possible before your appt too; as ES is quite rare, many doctors aren’t familiar with it & can be dismissive.
I hope that the Gabapentin helps; it can take a couple of weeks to build up enough to work, so be patient!
Thank you! I actually contacted a mate who’s a radiologist to ask as I couldn’t find any skull diagram which matched what I was feeling in my mouth. She was quite dismissive! Told me to see a Dr- fair enough. So I have. So now I await my referral and I shall report back. The Gabapentin does appear to be working already. A welcome relief to the jangling pain in my head.
I’m glad you are having results from the gabapentin already! I hope it doesn’t give you any bad side affects like the previous medication you took. Jules is a great resource for our UK members because she lives there, too. I’m in the US so am not as knowledgeable about the doctors & medical system in your country.
We’ve had members from Wales, & one in particular that you could try PMing is Pumpkin. Here’s a link to a thread where she’s posted. Just click on her name as it appears above one of her posts & you’ll be able to send her a PM. She had surgery there with a good outcome. Brain fog and fatigue - #3 by Pumpkin
That’s great. I shall contact her. Today I woke up with a blocked eat and I am hoping it’s something else. I opened a tab where I’d been reading about ES and "blocked ear " symptoms jumped out at me. I’ve been having issues focussing my eyes too, now I think of it…
One of our members was doing a bit of research into the fact that there seemed to be a bit of a cluster of cases in Wales, but haven’t heard anything back. At one time we had a few members, Pumpkin has had surgery, so might be an idea as Isaiah suggests to try messaging. Really surprised that you’ve been able to get an appt brought forward, the NHS doesn’t seem to be doing much outside of Covid right now…
Well …it was originally an emergency referral last August. I found out it had been downgraded by calling a patient support line. I emphasised the fact that my throat had really swollen, the styloid feeling like it had almost perforated my throat. I seemed to have had an infection in the wall of my throat. Pressing my styloid seemed to exacerbate my already raging menstrual migraine. I didn’t get those until recently but as I’m 45 I guess I’m in for a whole heap of fun in that respect too. Argggh
For what it’s worth, my pre, mid & post menopausal symptoms were not serious. The worst thing for me was I went through 3-4 months of extreme breast tenderness early in the process, but when that passed, a hot flash here & there was annoying but not a problem then things calmed down.The whole process took a couple of years for me so it was very gradual. Maybe that’s why my symptoms weren’t so bad.
I hope you’re able to get in to see a specialist ASAP.