Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group head symptoms of burning face, ears, scalp

Dear Askickers!

Has anybody experienced symptoms of burning and painful pressure in the ears, face, jaw and even temples? Or sudden shooting pains in their skull or eyes?

I have not found any old threads mentioning the symptoms aside from this post

Burning, pressure and pain in my head makes any pains in the rest of my body (aside from the neck) seem like a walk in the park. The sacrum and hips aches are very controllable by avoiding starch. But my head and neck symptoms do not respond to changes in starch much and they were the first and are the most chronic source of agony I have. Mind you it drives me crazy to sit for any length of time because my thighs will burn and ache. But I think that sore thighs are normal for all people, it just happens faster with AS people and old people.

The left temple and left eye socket almost always have a feeling of burning. The left eye wants to pull shut. If the symptoms get worse then pressure and burning go up and both temples are having a party. Even the left side of my face (the cheek) burns and aches. My eyes will feel like they are being squeezed and I will get random surges of pain in my eyes or parts of my skull as if a vasospasm just happened thus increasing the pressure in my eyes or blood vessels just under my skull. My eye muscles also easily get fatigued and if I try to look to the sides in that state then I get sudden painful spasm. The head problems are usually the worst in the middle of sleeping. This head problem seems to be waking me up thirty times a night.

You may know my history. Almost two years before strong symptoms of IBS and AS established themselves I had a "reverse blockage" accident during a scuba dive in August 2013. The only symptoms I had immediately after the scuba accident were mild scalp muscle twitching, the left eye twitch and some tingling sensations in my left maxillary sinus and nasal area. I was still eating anything and never experienced burning and pain in my hips, sacrum, feet, shoulders or hands. A month later there was throat inflammation。

I saw a doctor about the throat and he saw inflammation using a scope but did not see a cause. As the head pain became much worse a few months later I saw ENT doctors and neurologists. They did CTs and MRIs and saw inflammation but could not identify a cause.

Anyway, are these head symptoms ever found and understood as an AS symptom?

BTW: I am finally going to a different city in hopes that an internal medicine doctor with better listening (understands English) and cooperation (more culturally sensitive) skills will listen to my suggestion that it is a chronic infection. I also have suggested to a gastroenterologist and two rheumatologists that it is infections that are creating my symptoms of IBS and AS. When I have made such a suggestion to doctors I have heard responses such as:

• You're bigger than the bugs, you will get rid of the bugs (ENT #1)
• The probability that it is an infection at the base of your skull is very low (orthopedic surgeon).
• There is no association between AS and bacteria (rheumatologist)
• Yes, there are good bugs and there are bad bugs. I can get you to a doctor that can help you. (this head of rheumatology sent me to a psychiatrist!!)
• These bugs are normal, everyone has them (GI doctor #1 in a different "bug" context)
• The infection is probably gone by now (ENT #2 and GI doctor #2)

Sometime I feel like I am in a dream surrounded by demons having a good time torturing me. This situation with the medical system in a city of 10 million people is insane! There are over a hundred hospitals here.

I did one time in the past get jaw pain put it soon sorted itself out. Jaw pain is rather rare in A.S. but is still a recognised symptom.

Robin- years ago there were many of us who had tremendous jaw pain as a major symptom. Most of those threads have been deleted now I recognize now that much ofmine is from the vertebrea in the back between the shoulders. I also had teeth pulled because I thought it was something else.
When that thing slides our of place and send pain signals to the brain, it takes the fun out of life right now!
You are not alone. It is very real and can be quite individual in symptoms and pain.

Lon, thanks for the info.

mouth biofilms
About two years ago I had a filling replaced because three needed replacing. A dentist had observed that three fillings had gotten old, shrank and pulled away from the tooth allowing bacteria to collect in the crack. I've had two of the teeth fixed. No change.

You have inspired a post in Alternative Theories for Causation