First symptoms - Alicia: My Battle with Wegener's Disease book excerpt

Over the next two weeks  am going to publish excerpts from my book Alicia: My Battle with Wegener's Disease. The e-book is available for Kindle via Amazon.

This chapter is about Alicia's first symptoms.

In the face of pain there are no heroes.
— George Orwell, writer, essayist, journalist and critic - 1984

Although she didn’t realise it at the time, Alicia’s first symptom of Wegener’s Granulomatosis began with headaches in late 2004. They mainly occurred at work in the Register Office so she was referred to Occupational Health and they thought she might be suffering from menstrual migraines. Coincidentally, she was on her period at the time, so it seemed to fit. 

There was also another link. Alicia’s Mam, Christine, had suffered from menstrual migraines throughout her life. When an attack came on she would have to lie down in the dark and would be unable to do anything for 48 hours. She had extreme sensitivity to light and sounds.

She didn’t have all of the classic symptoms though, and this meant that it took a long time for them to be correctly diagnosed. Christine never saw the flashing lights that most sufferers report. Instead she had the terrific pain and couldn’t bear bright lights. Christine took to wearing sunglasses when the migraines were brewing. She would feel sick but would rarely actually vomit. 

Christine described the migraine as dull, constant ache in her head. It was far worse than a regular headache. An aspirin or paracetamol wouldn’t take the pain away.

The worst of the migraines lasted two to three days. If the migraine came on on a Friday night, Christine would be unable to function for the whole weekend. Christine learned to go to bed to escape any sensory stimulation. Stephen would pull the curtains shut in the middle of the day so that the room was in total darkness. He would comfort her as much as he could, bringing her cups of tea, but there was little he could practically do. It was a case of waiting for the pain to pass.

When Alicia described the pain she was experiencing, Stephen initially thought that they were menstrual migraines, the same affliction that Christine suffered from.  

The headaches were so severe that Alicia was sent home from work. Her vision was affected and she went to have her eyes tested. The optician found a slight weakness in one eye so she left with a pair of spectacles with a slight prescription for her left eye and an anti-glare coating. They suspected that using a computer screen continuously in her new job may have brought on the headaches and that she should wear the glasses whenever she was at her desk. Up until this point, Alicia had never worn glasses in her life.

The glasses seemed to help and the headaches seemed to recede a little.

Nevertheless, Alicia was ashen faced and very drawn. This frightened Stephen. As time progressed he realised that these headaches weren’t migraines.  They were something different.

Alicia: My Battle with Wegener's Disease

Alicia: My Battle with Wegener's Disease

Meanwhile, on the run up to Christmas Alicia went on a meal replacement diet. She was hoping to lose weight for the Registrars Christmas party and fit into her party clothes. At the time Alicia weighed 13 stone (182 pounds). Her target was to lose half a stone (seven pounds) in a couple of weeks. 

Alicia felt awful when she was on the diet. She would have a liquid lunch, soup usually, with shakes replacing other meals. She was shattered all of the time, tired and fatigued.  She hated the diet.

Once she has decided on a course of action she is rarely put off though, and Alicia attained her target weight loss. She weighed in at 12 and a half stone (175 pounds). She went to her Christmas party and then partook of the usual Christmas indulgences of eating too much rich food and drinking too much alcohol.

Just after Christmas Alicia began to feel unwell. Her headaches returned worse than ever, and her nose started running. Alicia also had a sore throat and a cough. She was also tired all the time. She felt generally rough and out of sorts.

Even though her nose was blocked, Alicia had a runny nose on her left side only and it was unusual for a cold because it ran a clear fluid continuously. Alicia ended up stuffing a tissue up her nose and leaving it there. She once jokingly said to her Mam ’it’s my brain leaking out.’ 

Alicia was having nosebleeds too. Alicia had had nosebleeds as a child but as she grew older they happened less frequently until she began to think they wouldn’t ever happen again. Now she was having regular nosebleeds, but Alicia also had dried blood in her nose, and whenever she blew her nose there would be blood. 

The symptoms worsened so much that Alicia found it difficult to sleep at night. Her headaches in particular were bothering her more. Alicia had to stay away from work on sick leave.

Alicia went to her General Practitioner (GP) Dr Kaura, and he thought she had a heavy cold, so gave her antibiotics. Her GP wouldn’t normally prescribe antibiotics for a cold but her symptoms were so bad he made an exception. They had no effect on any of Alicia’s symptoms.

As well as the antibiotics Alicia was taking the maximum doses of paracetamol and ibuprofen to fight her constant headaches. They weren’t touching the pain.

A week later Alicia went back to see Dr Kaura and he gave her stronger pain medication in the form of codeine. She took this in addition to the paracetamol and ibuprofen. He also gave her a nasal spray to try and control her runny nose and nosebleeds.

The pain began behind her left eye, deep in her cheek and at the top of her nose. It soon spread to the left side of her forehead. These were like no headaches Alicia had ever experienced. The pain was so overwhelming that she was struggling to function day-to-day. Alicia had had bad headaches in the past but nothing like this. She went back to see the doctor again.

Doctor Kaura suspected that Alicia was suffering from cluster headaches. Now he prescribed Tramadol, an opiate based painkiller, to be taken on top of the other medication.

Initially Alicia felt that this dialled the pain back a little, and dulled it down. However, by then Alicia had learned to function a little despite the pain, so it may just have been that she was dealing with it herself and the drugs weren’t helping at all. She doesn’t know for sure.

That's all for today. If you want to read much, much more please check out the book.