The Go to Girl

I have been in pain for 5 years….. What is it…..

About 5 years ago I went abroad to USA on the most amazing holiday, we stayed at a great hotel and went on all the rides at all of the Disney parks. It could not have been a better holiday until…… we went into the hot tub or so i thought.
After we came home from holiday i started having pain in my ear, not knowing what it was i went to the doctors. My doctor said i had an ear infection and what had i been doing? I said i had just returned from holiday he asked if i had been swimming. Well i had and i had been in the hot tub, i had after all been on holiday, who does not go swimming when they are the holiday.
He said i may have got water in my ear which could have caused the infection. He gave me some antibiotics and off i went. A couple of weeks later the pain was still there so i went back to the doctors, he checked my ear and said the infections had gone and he did not know why i still had pain in my ear. He gave me pain killers and again off i went. The time went on and the pain steadily got worse and lasted for longer periods.
After several more trips to the doctors i was finally referred to the specialist at my local hospital for an MRI scan. The results came back, eventually, apart from a problem in my neck i already had been diagnosed with they could not see any problems with my ear and said it must be a problem with my sinus. Ok, what do i do with this information.
I was given a steroid spray to use and also a saline spray to keep my sinus clean. Use this every day i was told. I did as i was told and hopefully this would be the answer i was looking for. No. This made absolutely no difference to the pain i was suffering. Again i went back over and over and hen it happened. I went to see a new doctor at my local surgery, he who shall remain nameless was a breath of fresh air. Right he said we are going to get to the bottom of this.
Great i said after about four and a half years of suffering. He booked me in to the local hospital again for a CT scan. This would show once and for all if it was my sinus causing all the pain. The day came and off i went for my scan and a hearing test weirdly enough. I went home full of hope of a cure for my pain at last. I waited for the results an waited and waited.
No results came so after about a month i called the hospital, i am behind with the results said the lady on the other end of the phone as if my pain meant nothing to her i was just another number. I was very annoyed by her tone so i thanked her before i said something i should not and put the phone down. I went back to see my doctor to tell him of the phone call. He said he had been researching my symptoms and thought he may have the answer.
Trigeminal neuralgia he said. what on earth is that i asked. Basically nerve damage in my face. He asked if i would be willing to let him try treating me for this and see if this made a difference. What did i have to lose? So i accepted his help and started on a different medication. Although it did help me sleep through the night without waking up in pain but it did not remove the pain during the day. In the mean time i received an appointment to go to the hospital, i did not now why so i called to ask.
It was for the results of my CT scan. Oh ok then and again off i went. I arrived and waited to be called by the specialist, finally i went in not to the specialist but to his associate….. I don’t know what that means either…
Her diagnosis my sinus was slightly swollen but nothing more than a normal person would have and the diagnosis Trigeminal neuralgia. My doctor was right and I was already been treated for this. WOW 5 years and my doctor diagnosed me before the specialist…
So I have told you my story now i have a question
Does anyone know what Trigeminal neuralgia actually is, I have read the pages the doctor gave me but as my readers are all over the world please help me with my question. Also if anyone knows anyone who has also been diagnosed with Trigeminal neuralgia and they have been successfully treated, i heard about chronic pain cream! Has anyone tried it?
PLEASE tell me in the comments below as I cannot wait another 5 years to get rid of this pain as the treatment i am receiving although in a trial stage, is not guaranteed to work. Does anyone know what or how to treat this successfully.
Still loving being me just with bit of hidden pain……
Love thegotogirlsblog xxxx

59 thoughts on “I have been in pain for 5 years….. What is it…..

  1. I had a friend who had this…it did go away…it seems like it was triggered with a weird in the way his teeth fit together, not a bug bite. I hope it improves. I am a multiple morbidity handicapped/pain patient. Pain in the head is difficult to ‘set to one side’.

  2. I’m so sorry to hear about your struggle with such constant and horrendous pain. I can’t imagine what that must be like. I wonder if you have pursued the medical marijuana route? I have heard that it works wonders for pain. The website, offers a wealth of information and recommends as an excellent source to obtain the CBD oil. I have no idea whether they will ship to the UK, but if nothing else, you’ll find the site informative. My friend is giving it to her dog to help with cancer pain and while the cancer remains, the dog is comfortable. Blessings to you, and I will pray for your release from pain! BTW, many thank you for following my blog ( Yours makes me want to go traveling!

  3. Hello, I have an entire blog dedicated to my Atypical Trigeminal Neuralgia, and your pain sounds very similar to mine. I am 28 in the US, my pain started for no known reason in November 2014. It took 4 months for me to get a diagnosis, which was still to long, but good, because my pain was so severe I was sleeping less than 4 hours a day, waking to the sound of my own screaming and likely would not have lasted more than a year.
    Atypical TN is a constant crushing, achey, and/or burning. Normal TN is electric shocks that come and go. There is no cure, but some people can get some relief from medications, and if you qualify for certain brain surgeries you might get relief for several years, but ATN is less likely to have a good surgery outcome. A few good info sources are the forums, and the Trigeminal Neuralgia association of the UK. My blog is maskingthepain on WordPress. Feel free to message me or reply to this comment if you have specific questions, I’ve tried nearly every treatment and medication available in the last 4 years and still have daily pain (though at a lower level than pre-medicines.) I get the horrible stabbing ear aches, as well as tooth pain, and nasty aches in my cheek, chin, nose and eye brow, all on the left side. I wish you the best of luck, and sorry to hear you’ve joined our 1% of the world face pain club.

    1. Thank you for your reply I will definitely have a read of your blog I have recently been diagnosed and am currently trying epilepsy tablets so keep your fingers crossed and I will let you know how it goes xx

  4. I deal with chronic pain everyday the only thing that I have found that works is medical marijuana and the supplements that I take doctors only like to treat you if they can fix you quite frankly to me Dr aren’t helping me they just frustrate me and make me angry

  5. Going through pain for such long is frustrating since it hinders your happiness. I pray your doctor will find solution to this for you to have relief so as

  6. Good grief, how frustrating is that, some relief in diagnosis, but perhaps hope for the future, Talk about stickability! Amazing.

  7. Hey! Out of curiosity, what medication are you on? Also, did you ever have chicken pox as a child/teen or get the vaccine? It’s not something I know much about as a final year medical student except that it’s loss of some of the nerve sheath (myelin) around the trigeminal nerve as it exits the brainstem or could be caused by compression from something else or previous head trauma. The cause isn’t always clear but I think you already know all that. Since it’s nerve pain, regular painkillers like panadol/tylenol, brufen, cataflam and such won’t help. I imagine you may be on something like gabapentin, carbamazepine or lamotrigine.

    1. They gave me carbamazepine and I had chicken pox when I was about 27 I think why do you ask? Yes your right about the pain killers they sometimes work temporarily when I take dyhydracodeine four times a day xx

      1. Oh I was wondering about shingles since that can cause trigeminal neuralgia but then you’d have a rash too I guess + it wouldn’t be constant pain so I guess that’s out. Hope the carbamazepine gives you some relief! Glad you finally got what sounds like a correct diagnosis too.

        1. Thank you at least with a bit of help with my pain I can concentrate on getting myself and my blog running better and start working towards bei being a full time writer xx

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