One morning, during our time in alternative accommodation, as I took my first mouthful of breakfast, I experienced severe nerve pain in my right cheek. I had no warning signs, no niggles and it didn’t stop. I experienced persistent shooting pain through my cheek. That evening I took 60mg Co-Codamol (prescribed for Endo pain), which had no effect. By 10.30pm I decided to take anti-inflammatories to enable me to get to sleep. I am not supposed to take these because of my Hyperaldosteronism. However, at this time I weighed up the pros and cons and decided it would be better to decrease the inflammation the abscess was causing. I only ever take them as a last option. I didn’t want to call 111 or get an out of hours doctor appointment. I knew it was an abscess, as I had one a couple of years before.
I arranged an emergency dental appointment the next day for 3pm. I managed to drive into town with minimal pain meds. My daughter was very helpful and didn’t speak much as she knew it was painful for me to speak and even more difficult to concentrate than normal.
On examination the pain was on a tooth which already had the nerve removed. Although the x-ray showed a grey area above the tooth behind that. The dentist prescribed antibiotics and told me the pain would eventually localise.
On the third day (Saturday) I started to experience double vision and an increase of fatigue. My walking was unsteady, feeling as though I needed crutches to support me. I also had increased sensitivity to light and sound.
On waking on Sunday my hands were feeling bad. I needed help to make the tea as I couldn’t lift the kettle or bottle of milk. The muscles in my hands were trembling. My hands were visibly shaking when I held them up. I’m unsure if my increase in neurological and fatigue symptoms were due to pain, taking NSAIDS or because I’d increased my Amitriptyline dose (in an attempt to control the pain). However, I increased the Amitriptyline AFTER experiencing double vision. To put the pain in perspective, this was the worst pain I have experienced since giving birth. Although during labour the pain subsides when contractions stop. This pain was constant with no break. It became worse when speaking, eating and brushing my teeth. I never increase a dose of anything to more than I have ever taken in the past, that was prescribed by a GP. Finally late on Sunday my face pain began to decrease noticably. I was able to fully close my mouth and fully open it without causing pain. This was a huge relief as I was able to decrease my intake of pain meds. When the pain got worse it wasn’t as bad as it was initially. The pain never fully went away in the first six weeks. I managed it by juggling pain meds, being mindful that codeine is very addictive. I tried to take as little as possible each time, just enough to dull the pain and enable me to tolerate it.
It is scary when severe fatigue symptoms return. I manage/pace so well that I have it under control. I greatly disliked the return of such severe face pain. I experienced this during my first experience of fatigue (2003/2004). It used to take an hour for me to eat dinner. More than anything I never want to return to being so fatigued that any activity is the same huge challenge it used to be. It’s easy to feel you’re on the slippery slope to losing all you have worked years to gain back. What leaves you in a day or a week can take weeks, months and sometimes years to regain. I’m sure everyone who has experienced any level of fatigue will understand my aim to remain as free from fatigue as possible. My heart goes out to those who remain as severely fatigued as I was previously, with no hope of improvement.
I am so relieved this was an acute situation which gradually improved. The reminders of neurological pain and fatigue helped me to realise how well I am now. Even though I still experience chronic pain with endometriosis and I still have mild fatigue. But compared to my past experience it is much, much easier to deal with. I know how my body works and how it reacts to things. This has taken me many years, a lot of mistakes and some negativity from others. But we know our bodies better than anyone. Because I’ve had an understanding family supporting me, I have been able to rest as necessary, without feeling guilty.
As the post is published I am just over a day away from having the second part of the treatment. This is going to take an hour. Unfortunately, my pelvic pain is at it’s worse. I will take my full dose of pain med in the hope it enables me to sit for that length of time in as little pelvic pain as possible.