Trigeminal Neuralgia

Pull up a chair.  This might take a while.

Remember that twist I mentioned on Monday?  Well!!  Friday morning of last week saw me sat in the Accident & Emergency department of the local hospital for two hours.  I had gone to work as normal, taken children to classes, spoken to parents and taken phone calls.

I had tried to get an appointment for the Dr to phone me about pain management for the neuralgia (TN) in the side of my face.  I couldn't get an appointment as they were all filled and a Dr couldn't call me back as all those slots were filled too.  My only option was to call at midday and hope to get an appointment, that afternoon, at another local hospital.


Getting back to work, I popped into the front office to pass on a message, when I suddenly felt like I'd been hit across the head with a shovel.  The pain was excruciating.  It went along my jaw, up the side of my nose, through my eye and into my head.  I yelled something rude and keeled over.  It felt like the top of my head was going to split open. The ladies in the office were naturally alarmed and managed to get me into a chair, but I couldn't think straight, couldn't speak and I was in floods of tears with the pain.  And I had snot on my sleeves.  It lasted all of a minute, but was the most horrendous minute of my life.

I was taken back to my office where my friend called the NHS emergency line.  We spoke to a lovely lady called Nicola who took all my details and said that I needed to be seen within the hour.  She booked me a slot at the hospital and my friend took me up there.  Luckily it's only 10 minutes from work.

The staff at the hospital were amazing.  I saw the triage nurse within 10 minutes and the consultant 10 minutes after that.  Dr Abdulah was an international student from India and was very good.  He listened to my symptoms and took a history of the pain.  He then related all of that to Dr Ash, the consultant, who explained that it was Trigeminal Neuralgia.  (See link for details.)   A condition that can't be cured, only managed.

To start with they give you epilepsy medication and if that doesn't work there are several surgical routes you can take.  I'm hoping that the medication works, as I have enough going on at the moment, to add another op into the mix.

The pharmacy was extremely busy, so I had a 45 minute wait.  Time for a coffee and a spot of people watching in the hospital cafe.  It brought back memories of sitting there when mum wasn't well.  I chatted to a very nice lady who hadn't been eating properly the last few days and was really looking forward to her cup of tea and buttery toast.  

The pharmacist took the time to explain the medication to me, even though they were maxed out, and I was very grateful for that.  I have, since, read and re-read the leaflet that came with the tablets.

My friend came and picked me up and I went back to work.  I felt absolutely fine, so stayed for the afternoon.  The head teacher did tell me to go home but I said I would stay.  This is something I have to live with now so best start as I mean to go on.  I apologised for saying a rude word but he said that under the circumstances he understood!!

I felt washed out by the time I got home, so I had some dinner and flopped onto the sofa to watch All Creatures Great & Small, followed by an early night.

As my mum would say.... "These things are sent to try us".  And she was right.



Comments

  1. Oh Liz I am so sorry for you. That must have not only been painful but quite frightening at the moment. I think your swear word was probably the most appropriate thing to say at the time. Fantastic that you were seen so quickly. Let's hope that this medication does manage the pain. I for one could certainly take less of the things that try us for a few more of the things that make us joyful ... but still it could be worse, is what my Gran would say.

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  2. Thank you. I'm off to see the Dr later to find out what comes next!!

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  3. Oh my goodness how terrifying that must have been - you poor thing. I bet the ladies in the office were totally shocked. Thank goodness you were able to be seen and treated so efficiently. What a shame it is something that can't be dealt with and forgotten about, I wonder if in keeping a diary of how you feel you may be able to be aware when something may about to be happening again?
    My friend is on epilepsy medication for a severe back problem, I wonder if it is the same one? I know she has to be very careful about taking it properly. Hopefully a discussion with your doctor now you have had time to google your diagnosis will answer a lot of your questions.

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    1. The office ladies were shocked, as was the head teacher. Apparently he went grey!! The Dr upped my medication yesterday and, fingers crossed, all is well today.

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  4. ooooh i feel your pain, literally. i have had trigeminal neuralgia for many years. i have been on all of the medications, had a cyberknife treatment and then eventually had the nerve cut. the medication has only helped me some, but it is def better than it was!! i feel for you, it is so painful and shocking in the beginning, especially when you do not know what you are dealing with!! good luck to you my friend!!

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    1. Thank you Debbie. I seem to have spent a lot of time looking up information about how to help with the pain and the meds (Carbamazapine) seem to be working so far. The Dr didn't seem to think it was related to MS as I don't have any other symptoms but he will keep an eye on it. More research needed I think. I hope you're doing well :0)

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  5. the trigeminal nerve has 3 branches, my doctor only cut one branch so i am still experiencing some pain. i am taking neurontin and and carbamazepine right since cutting the nerve did not help completely!!

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  6. I can't imagine how painful that must have been and to find out it is something you have to live with. I hope the medication works. What a day.

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    1. What a day indeed. I'm now waiting for an MRI scan to see what's going on with the nerve and then we'll take it from there.

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