My Story

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.

Please feel free to share your stories, too….Pain-Positive-Tag1


6 thoughts on “My Story

  1. ScorpionGlow says:

    Look into bone scans and other testing because it’s quite clear something is wrong. Don’t take “No” for an answer, EVER. Doctors get paid, and therefore should be courteous of the fact that no one suffers for this long if “nothing’s wrong”. It’s possible it’s a systemic migraine, which are hard to diagnose, but DO exist as you described, so ask about your stomach, even if you’ve have no symptoms at all. It’s my understanding that if they can find the root cause, they can properly medicate it or stop them from being a daily issue.

  2. Toni says:

    Stomach? Interesting.. I will research. I haven’t gotten around to blogging it yet, but I have seen a new consultant this week who is much more open-minded and willing to investigate than all the others I’ve seen. We are going down the route of a combination of tension headache and migraine at the moment, but I am very interested in finding a root cause so as to treat that rather than taking drugs to mask symptoms. Thank you very much for your comment.

  3. mini2z says:

    I see you run the gambit of doctors and specialists. Have you tried a Chiropractor? I went through five before I found one that started to fix my issues . The 5th Chiro had me get an xray and asked if I’d ever had whiplash and I remembered that I had when I was 14 and almost broke my neck on a trampoline. after almost two years of adjustments my c-spine was finally getting better. The headaches and migraines were better. That chiro moved and another equally great one took over his practice. My only problem is he is studying to work mainly on concussion patients and is hardly ever there.

    I also took my daughter to see the 5th one (she saw him before me) his hands were as big as her. She was colicy and a little tiny manipulation and she slept for almost 8 hours that night. That’s when I started seeing him.

    I’ve had migraines since I was 24. The neuro said that there was NO way that they were brought on from me hitting my head. They start in the same place I hit my head on my dining room table and still get them today.

    I’m going to also suggest a complete Thyroid bloodwork (if you haven’t already) T3, T4, Free T3, Free T4, Thyroid antibodies and anti-ana as well. Check out symptoms of thyroid, there are over 300 symptoms.


  4. Toni says:

    Hi Mini,

    Thank you for your comment. I have seen both a chiropractor and an osteopath along the way. The osteo helped massively with neck and shoulder pain and got me through a particularly bad patch. I still use some of the tricks he taught me (eg. hula-hooping!). We did, however, reach an impass, where I was left with the headache / nausea / reading issues and he could only suggest where I go to next.

    Unfortunately, neither of these are available on the NHS, and I gave up my home to move in with my (amazing) parents in order to fund these visits. Having rebuilt my life somewhat, it isn’t an option for me now.

    (I’ve done the blood tests, too.)

    I’m glad you found a chiropractor who has helped you, it sounds like you’ve had quite a time of it, too. Best wishes :)

  5. Heather says:

    I have had what is termed Chronic Daily Headache where I had a low level headache all the time and then my migraines on top. a couple of years ago I had surgery to relieve this which worked but there are very few doctors that do this and you must test with botox first which I would suggest anyway. Also you should probably get someone, neurologist, to do nerve testing. have you gone to a pain clinic – i also got shots in my neck eventually and now for my neck i’m trying a spine stimulator.

  6. Ginnie says:

    I have been dealing with chronic daily migraine for 14 years and that diagnosis doesn’t even begin to describe the depth of pain and sensations of unrelenting spasm that had been a prison for me. Symptoms the same as your including IBS-C , chronic vulvodynia, facial pain and severe TMJ dysfunction. I have done the same route as many of you- seeing a variety of specialists and healers. I decided to take control over my own health 2 years ago. I began searching for answers, connections and diagnoses. Piecing it all together. I started on an autoimmune paleo diet which reduced my pain by eliminating inflammatory foods. Yoga, Qigong, meditation, mindfulness and nutrition have helped me reclaim my life! With some physical therapy and cervical traction and continued gentleness with myself, I hope to continue on my healing path.
    I was diagnosed yesterday as having craniocervical instability and Ehlers Dahnlos Syndrome. I’m glad there’s finally a name that I can give this beast. There weren’t any changes on my MRIs over the years- something that was dismissed as artifact, not even mentioned in any report, is now diagnostic of EDS. My MRI from 6 months ago was again read as normal by a different specialty hospital. The neurosurgeon that diagnosed me was someone I had met with one time 12 years ago and I decided to see him to have additional testing because he was the only doctor that seemed so truly engaged in my case.

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