I wanted to get a feel from y'all about if you are working or not due to the pain and everything from glossopharyngeal neuralgia. I am a 30 year old, who has been teaching for 6 years. I am teaching a new grade this year and that has added stress on top of teaching 6th grade. I teach at a "failing" "urban" school. My question to all of you (not to be too personal) but

1. Do you work? or Did you work when you first diagnosed/going through everything at the beginning?

2. If you did not work- did you take a leave of absence? FMLA? Did you qualify for disability?

3. Are you aware of ANY forms of assistance to help a CRAZY teacher out who really just wants to start feeling better and take care of herself!!!


Any other advice is welcome!!!

I had a long history of mental illness (starting in early childhood), prior to developing glossopharyngeal neuralgia. This made is much harder for people to take the incomprehensibly painful sensations seriously, but allowed me to get on disability. It's very isolating being on disability. People think you're worthless. As a man, I'm not a strong provide, so people are extra judgmental as I've failed gender expectations, but survival is more important than being liked.

Assistance will depend a lot on where you're located. Which again would likely be more personal than many would want to reveal. In the United States getting on disability takes a long time. I got a bit personal there, as you used the word crazy. I know you're not crazy (neither am I in spite of mental illness) but if they won't take you directly for glosso-pharyngeal neuralgia due to the rarity and lack of understanding of the illness you might be able to emphasize your state of mind.

I was already struggling with suicidal feelings, and severe social phobias. Agonizing and incomprehensible pain on top is too much for many to bear. Get whatever you need to survive, but be prepared that when you aren't a 'functional member of society' as people like to call it, you get viewed through a different lens (that isn't a pretty one) and if the impairment isn't immediately visible, it's even worse.

As a quick follow up, if you ever do go that route, it would be very helpful if you have the diagnosis of glossopharyngeal neuralgia first for realistic treatment options.

This is due to a concept called 'diagnostic overshadowing' where problems can be attributed as 'psychiatric' if the patient has any history of psychiatric illness.


Hi Kelley. Hello from another teacher!! In 2011 I was a full-time Head of Spanish at a local secondary school and had been for 7 years. When my symptoms started that year I had so much absence it was unreal. By the end of 2011 I had to leave my job because I couldn't cope with the pain. Eventually I was put on Tegretol and during 2012 that helped control the symptoms somewhat that I was able to get a part-time teaching job which I've now had for 3 years....when I say "part time" I really mean it....I only work 8 hours a week and that's about all I can take not just to do with the constant talking but the medication which has dulled my mind and made me sooooooo forgetful. There's no way I could consider being full time again until I was pain free and off all the medication. Have just had my MVD done but still have some gpn pain, but can't reduce my medication until 6 weeks post-op to see if it worked or not.

I can't help with your other questions because I'm in the UK not US, but I do know that going part time saved my "brain"...I couldn't have sat at home thinking about the pain constantly.

1. Yes, I'm a little over a month in and took a few days off at the beginning. Then a few more for doc appointments. I'm now taking afternoons off everytime there is a med increase as it makes me drowsy and spacy. Working from home quite a bit as I can do things in the evening. My boss is very understanding and I am fortunate to have a generous amount of sick leave.

2. Talk to your HR about FMLA. Yes, this would qualify although every organization handles it a little differently. Don't hesitate to ask your doc about requesting "reasonable accomodations". Try to figure out what you need to feel comfortable and see if your doc can articulate it for you. Whether that's a reduced schedule, more breaks, time-off, it's a little different for everyone.

3.Some workplaces have banks of donated sick leave. Ours does but doesn't advertise it. Although you are not required by law to disclose your condition, being upfront can help.



I continiued working for the first 5 years in terrible pain, but by the time I turned 31 it got even worse and I had to stop. I am at home for close to 2 years by now and I hate it!!!

How to get around financial problems is for sure one of the major issues, but everyone`s situation is different and unfortunately I can not give any advice.

All the best.

Hi Kelley

I had to stop work once I started on Tegretol - talk about going to dizzy land! Unable to drive, I became a sickness beneficiary (= no money) and was careful to watch my (high) dosage to keep the pain attacks at bay. Eventually, after 5 years I had my MVD which was successful and now 10 years on, am very grateful for the Surgeons work. So grateful in fact, that 6 years later I was working beside him in Theatre (In Anaesthetics) as a testament to his work.

It wasn't till after my operation did I feel good again. The pain or threat of pain was like a constant shadow and really is a test of ones fortitude. Focus on positive outcomes because they do happen. All the best Kelley.