For those of you interested in my personal headache story, here is the story so far… (make yourself comfortable, it’s a long one). Please do share your experiences, too – I’d love to hear from you.
In August 2012, I tried to read and found that the words were moving. I developed a headache, which over the course of a few days became overwhelming. My head, face, ears, neck and shoulders were in pain, with a particularly sharp pain across my right eye.
My life crumbled – this initial headache did not fade for a second until February, during which time, I was unable to work for longer than half an hour at a time. I gave up studying, as reading caused a pattern of instant nausea, headache, neck pain, shoulder pain and – if I persevered with the reading – I would collapse, then wake up feeling feverish and pass out again – this cycle continued over several hours. There was a strange sensation in my ears – sometimes a trickle, sometimes the sensation of a puff of powder exploding, sometimes my hearing would ‘shift’ from one side to the other. Occasionally, I experienced a ‘head shift’ feeling in which the world suddenly ‘moves’ to one side.
After 4 weeks, I visited my GP. Migraine was ruled out, as the symptoms were constant, rather than ‘migrainous’, however I was offered Propanolol (80mg 3 x day) which ‘took the edge off’ for a short time.
Naproxen and Cinnarizine had no effect. Metoclopramide caused tardive dyskinesia – it took nearly 2 weeks to feel normal again.
In September 2012, I visited the optician. I was given a prescription for reading glasses. I wore the glasses for 3 weeks before I returned to ask whether they should be causing dizziness and was told not to wear them any longer. (I have always felt, and still do, that my vision is perfect!)
In December 2012, I saw a neurologist and an MRI was requested.
In February 2013, I received a letter stating “your MRI brain didn’t show anything unexpected. Some so-called T2 high signal areas in the brain.. they are of no consequence to you and they don’t need further investigation”.
In mid-February, I saw a massage therapist who gave me ‘trigger point therapy’ for the sorest points in my neck and shoulder, which helped to relieve the pain but did not alter the reading / nausea problem.
On the 28th February 2013, I saw a neurosurgeon. I reported a grinding sensation in the spine at my neck, pain around my shoulder blade, almost constant nausea which was worst at night and after reading, a pins and needles sensation in the roof of my mouth, pain in my face and behind my ears, and ringing in my ears. He examined me and stated that there was “nothing wrong”!
On the 8th March 2013, I saw an NHS physiotherapist. I had 3 sessions over 5 weeks., was assessed for lifestyle and postural problems, and given some exercises to do at home. The physiotherapist had me lie on my back with my head hanging back off the edge of a table, which caused me neck pain for the next few days. I was given a session of neck and back massage. At the 3rd session, I was surprised to be dismissed because there was no improvement.
In March 2013, I visited the dentist to report face pain, and a pins and needles sensation in the roof of my mouth – he could not find a problem or offer any insight.
My GP considered that sinusitis might be the problem. I was given a course of antibiotics and a Beconase spray. They had no positive effect.
On the 25th March 2013, I saw ENT, who examined me and stated that sinusitis was not the cause. He mentioned myofascial pain and prescribed me a 6 week course of Dosulepin for 6 weeks, which had no effect on the pain, and unfortunately I was not warned about the effects of coming off them – I experienced uncontrollable crying and depressive thoughts, it was a terrible experience. (If you’re interested, see my original post The Dangers of Dosulepin.)
In April 2013, I had an MRI Spine Cervical – “nothing to report.”
At this point, I changed GP’s because my GP became exasperated and stated that he could do no more for me. My new GP prescribed Voltarol gel (Diclofenac) which I found effective for short periods on neck and back pain.
From July to December 2013, I had several sessions with an osteopath (I had given up my home and moved in with my parents to pay for it), after which my neck and shoulder pain were much improved. The nausea when reading remained.
In June 2014, I visited an eye clinic where the specialist stated that he thought that a gaze palsy may be the problem, but that he would need this confirmed by a consultant, to whom I was referred. Diagnosis: “Unusual symptoms which might localise to mid brain as some subtle horizontal eye movement disorder. I think they need to look closely at mid brain here.”
I requested a blood test, having started taking vitamin B12 supplements in an attempt to conquer tiredness, and after having read about a possible link with neurological problems. My first test showed “ESR 22mm/h” and a retest was requested after one month, which showed ESR “Normal – 5mm/h”
In October 2014, I saw a neuro-opthalmologist. The registrar conducted eye examinations and concluded that my right eye appears to move slightly slower than my left, and witnessed that when reading, I have difficulty with ‘catching’ the beginning of the next line. Another MRI was ordered.
In February 2015, I had a follow-up appointment with the neuro-opthalmologist, who stated that there is “no problem, no risk to my life”! (He was a charming fellow!)
At the time of writing (April 2015), my most prominent symptoms are;
Nausea and eye discomfort – almost constant in a mild form, increases dramatically on moving my eyes side to side, which causes instant headache (particularly over my right eye). I have what I describe as sinus pain across my nose and eyes.
Ear discomfort – I experience a ‘powder puff’ sensation, a trickling sensation, and occasional sudden hearing clarity (indicated by the TV / music suddenly sounding loud, or by a sensation that music is shifting from one ear to another).
Headache and neck ache – usually a constant low-level / forehead headache causing tiredness. A pain over my right eye becomes ‘sharp’, and there is an ache around my right eyeball, when I move my eyes / read for a short period of time. I experience a grinding sensation / sound (I have previously described this as the sensation of two bits of coarse metal grinding against each other..!). Sleep does not relieve the headache.
I am frequently lethargic and have trouble concentrating.