Tuesday, 12 April 2016

Back to work!!!!

It's only day 2 of being back at work and already I know I can't manage!!!!
I even woke up with head pain this morning and that rarely happens. My head has continued to build in intensity and pressure all day and I literally can't stop the pain, no matter what I do.

I have caused such a scene at work, refusing to teach certain age groups and getting things made as manageable as the role can be....so I need to try and do as much as I can.
I think when I get an operation date, then I will feel like it's actually happening and I can begin to plan how I will make it to that date and what I can cope with having had that worry eased a bit.

UPDATE: 19th April 2016
So I've been back for a week and a half and I thought the pain and panic was beginning to settle and ease. The dull constant head pain is lower but this evening I have had a terrible sharp pressure pain at the top of my neck when I bend my head forwards. 
I can only put this down to the amount I would use this position of my head at work, talking to young children.

I have also had really sharp almost continuous pain around the battery area once again. It has been like this the past 2 days and is really uncomfortable and disconcerting.

I am battling through with work. Part of me wants to prove to myself that I can do this. Time can only tell, but no matter what I am counting down the days until my next operation. It's April now so not too long to make it until May!!


  1. Dear unluckygal,

    (Sry - I mistakenly posted this under your Dec. 2016 post, so I have cut and pasted it here where it belongs)... My name is Kevin and I live in Chicago. I have occipital neuralgia starting very mild in 2004 but becoming disabling in 2010, causing me to leave a career that I loved as a Director of Research & Development for a large electronic communications company. I have recently found your blog, but I am only at August of 2014 in my reading. However, I jumped ahead to this most recent entry to see how you were doing. Not so good, I see. So sorry. Your too young to be suffering so. I had frightening symptoms very similar to yours', but have been able to get them somewhat under control. I have had over 100 needle-based procedures since 2004 (most having been done since 2010.

    You sound so desperate, and as I have been there, I wanted to make a quick suggestion that has been very effective for me. Twice each week I take 30 mg of prednisone (three 10 mg tablets, also very cheap, < $10). Anywhere from 8 to 24 hours later my pain is cut in half for about 24 - 36 hours. It is a powerful anti-inflammatory, and presumably reduces inflammation around the C2 & C3 nerve ganglion, bringing pretty remarkable relief, at least for me, and I so hope for you. Knowing that I have this source of relief available is very calming for my outlook on life. And there is flexibility regarding the days that I take it, which allows me to time it to be "good" for important events. I would think you could take it on Sunday to get you good for Monday/Tuesday at school, and Wednesday to get you through the rest of the school week.

    You will need to see a rheumatologist to get a script written. Most medical professionals have a knee-jerk reaction about taking prednisone on an ongoing basis, and recommend against it. And you will read all kinds of warnings about it, but my Rheumatologist tells me that 60 mg per week is very low dose and he has had rheumatoid arthritis patients on it for decades without issue at this dose. You'll need to get a bone "dexiscan" when you begin taking it to establish a bone density benchmark that is repeated every two years. This is like getting an MRI. I know that your government provided medicine is realIy screwed up w.r.t. getting new procedures done, but this test is important. I have been on prednisone for 3 years with zero change in bone density (that's good, because bone loss is the main concern). Medical people may push back on this, but hell, they can't understand what it's like, can they? It's like I no longer fear dying because at least the pain would stop. That said, I plan to make a 100 yr because I have two beautiful daughters and and an amazing wife ;^) I was glad to read that you have a boyfriend... ON is too difficult and isolating to face alone. If you are interested in discussing this offline by email I'm sure that we can find a way to exchange emails. I have another medical suggestion that might help you. Empathetically Yours, Kevin

  2. Two additional points regarding taking prednisone. I take calcium/Vit D supplements daily to lower risk of bone loss. Also... a disclaimer... I'm just a patient trying to find a way out of the nightmare that occipital neuralgia can be. I'm obviously not a medical professional and I only pursue treatments that my physicians recommend. So please take my comments not as advice, but as a starting point for a conversation with your own physicians and advisors.