I am Delicate; I have neuralgia, also known as prosopalgia, the suicide disease

I am delicate

That is when I am not in complete agony

Neuralgia headache

Neuralgia headache

Initially my doctor thought I had sinusitis, which i am prone to since i have had hay-fever since childhood and a recent MRI scan highlighted that my right sinuses are blocked and will probably need draining soon, however the pain this time was not in my nose, but around my eyes and lower forehead, and as it became more intense it centred itself further into my left eye and my left cheekbone.

The pain was so intense on Thursday night I cried all night, trying to find a painkiller that would simply reduce the pain slightly.  It was dreadful.  I wanted to be taken to hospital and to be given a general anaesthetic to remove the pain.  I could understand people killing themselves over headaches. My hand was over my eye the whole time, I kept putting cold wet flannels on it, I thought it was going to burst the pain was so awful.

First thing on Friday morning we rang the duty doctor to ask for some different painkillers & the doctor also suggested antibiotics just in case, though I don’t have any symptoms of infection (temperature, feeling ill, achiness elsewhere etc).  By the time I got to the doctor to collect the medicines I was crying again and asked the receptionist to ask the doctor increase the dose again.  She told the duty doctor what a state I was in and I got to see my registered GP.  He took one look at me and said “right, lets start again”.

After talking with me for 20 minutes he established that the pain I have is neuralgia caused by a damaged, injured or over-sensitive nerve in the side of my face that is causing my pain.

The medication that I am already taking for my Fibromyalgia treats this type of pain as it acts on the same receptors, pain receptors on the nerve endings, so he has just doubled the dose, and then given me some intense anti-inflammatories as my cheek is swollen from the pain, and if there is pressure on the nerve this will help relieve it.

24 hours later already i feel better.  The new regime of painkillers is a much lower dose so I am not in as much pain, I can now brush my teeth again and drink cold water without wincing.  But i am still very fragile, delicate.  I need a lot of TLC!

These are the instructions I found on one website:

  • Eat soft foods.
  • Make sure your drinks and foods are not too cold or hot when you consume them.
  • Wash you face with lukewarm water (body temperature).
  • Use cotton pads when washing your face.
  • Rinse your mouth with lukewarm water after eating if tooth brushing triggers an attack.
  • Avoid known triggers as much as possible.

I have to wear a balaclava style scarf when I go outdoors, and I can’t wear any of my glasses as the weight of them hurts me, even though I have always had very lightweight frames with plastic lenses made for me, now I can’t wear any.

I am making an appointment with the dentist on Monday just to rule out an abscess which can often cause neuralgia like pain, but based on my history of fibromyalgia, it is much more likely to be a nerve problem.  The only niggling worry is that it might be the start of MS.  There I’ve said it.

Hopefully not.  I don’t think it runs in our family.

So it’s me that’s delicate… like this little flower we found growing between the cracks of lava in Lanzarotte

Delicate Flower in Lanzarotte

Delicate Flower in Lanzarotte

For a more pictorial representation of delicate have a look at my first attempt 🙂

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About Barbara

Born in Dublin, living in London with Peter, my two daughters, Wilson our Spaniel & Woordow our Malshih (Shih Tzu-Maltese cross)
This entry was posted in Fibromyalgia, Gabapentin, Lanzarotte, Neuralgia, Photography, Sinus headache and tagged , , , , , , , , , . Bookmark the permalink.

29 Responses to I am Delicate; I have neuralgia, also known as prosopalgia, the suicide disease

  1. Hello Barbara, I am so sorry to read this posting. Must be every day very difficult to be for you. I am really sorry.
    Best regards from Germany
    magdalena

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    • Barbara says:

      Dear Magdalena

      Thanks so much for your lovely lovely comment

      I have had a few dreadful dreadful days, but feel like I’m turning a corner now. My doctor has listened to me well and I feel like I have a better understanding of what is going on. His diagnosis matches what I am feeling, and the internet websites describing neuralgia are describing exactly what I am experiencing.

      It is lovely to have so much support even from people I haven’t met! xxx

      Like

  2. The purple flower is lovely. I’m glad to hear that you have a doctor who listens and that it looks like you might be turning a corner.

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  4. Grannymar says:

    I am a day late, when I should have been here to offer sympathy and TLC. Any pain about the face or head is horrible. When asked to place pain on a scale of 1 – ten, I always compare it with the dreadful earaches I had as a child. Nothing, not even childbirth ever tipped them!

    When unable to brush your teeth, try rinsing your mouth with tepid water with a few drops of white vinegar in, it does refresh it. Hope the new meds do the trick and you are back on top form real soon.

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    • Barbara says:

      That is what the pain reminded me of, the earaches I used to get too. Mum & dad used to take me to the doctor in the middle of the night because I wouldn’t stop crying with the pain. When I was crying on Thursday night, my head said ‘mummy’ Amazing how we believe that mommies can fix even the worst of pain.

      The only comparable pain I have ever had was a severe kidney infection, but that then they gave me an injection in my bum to fix the pain. I have been in A&Eva few times with that. Somehow I knew on Thursday that they wouldn’t give me an injection for the win in my head. The Doctor agreed

      It’s pretty bad this morning, but the painkillers haven’t kicked in yet….

      Don’t worry, I brush my teeth with warm water 🙂

      Like

    • Barbara says:

      PS this was a definite 10

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  5. Leanne Cole says:

    That sounds horrible Barbara, I understand your pain. I used to get migraines, but haven’t for many years. I hope you can get past it.

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  7. I don’t want to click like but I don’t know what to say. Our health is delicate. I hope they can find a way to manage or better yet, alleviate your pain.

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  10. eof737 says:

    {{{HUGS}}} Hope you continue to recover…

    Like

    • Barbara says:

      Thank you 🙂

      I really over did it yesterday. I was feeling a little better and decided my car needed cleaning. It has needed cleaning for 6 months, so it could have waited a few more days, but hey ho. Have gone back to bed this morning as feel rotten. Hopefully a few hours in bed will help! Xx

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  11. I am so very sorry you suffer with this.
    It’s the first time I’ve understood the symptoms, the pain, and the treatments.
    Bless your heart, I do wish the best for you.
    Lovely flower and beautiful blog.

    Like

    • Barbara says:

      Thank you so much. I have been shocked by how painful the neuralgia has been, and how long it has lasted. I have been in tears with the pain. I think it is so bad because I have fibromyalgia which means that all my pain responses are heightened. I am hoping it is getting now. It’s not so cold here now which really helps. Thanks so much for your kind words xxx

      Like

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  13. palmitoylethanolamide4pain says:

    Reblogged this on palmitoylethanolamide4pain.

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