Something that I’ve written about a few times is the pain and pins and needles covering my face and scalp. It’s been the best way I could describe them but the phrase, pins and needles has never seemed to explain the severity of what I’ve been experiencing.
My first experience of them was a horrendous new symptom. The tingling began just before I started to lose my hair and gradually spread down my face and neck. A constant burning, tingling sensation was made worse by wind, make-up, earrings, hats or scarves. At times they were manageable and I was able to be outside and try and bear the sensation. But it was affecting many aspects of my life and along with hair loss, furthered my lack of confidence.
I saw countless doctors and even a private neurologist. I tried several different, nerve targeting drugs, I tried patches on my head, had scans and tests but ultimately no doctor could get to the bottom of them. They were invisible and was told to just hope they would go away. I was told it was paresthesia which essentially, is pins and needles.
The pain would get so bad at times; once I even took myself to A&E I was so desperate. I waited and when I was eventually seen, within five minutes I was out again, having been told that if a neurologist couldn’t diagnose, an A&E doctor wouldn’t be able to. Sorry, but go home, we can’t help you.
Then, I had my second bout of shingles and was on a course of anti-viral tablets. One morning I woke up with the most horrendous ringing in my ears, followed by what felt like my ear drums bursting, and, just like that, the pins and needles dissipated. Gone. Just like that. I made a doctor’s appointment to check my ears as I was convinced that the burst had caused some damage, but no, nothing, and again was told, be happy they’re gone, don’t question it.
I then had a blissful twelve months without them. Until early November 2019, I was at a very low ebb, a bad M.E flare up and I could feel them creeping back across my face. I didn’t tell anyone to begin with, it was too crushing to discuss and I hoped they would go. But over time, they got worse, much worse than before. Lockdown 2020 arrived but in all honesty, regardless of lockdown, I’d have still been locked down. They are so bad I can’t lay my face on a pillow, the sun or wind is so excruciating it brings me to tears. Showers are having to be quick and with as much of my face out of the water as possible because it feels like electric shocks under the water stream. Hugs from loved ones hurt. When friends come for socially distanced visits in the sunshine, I have to sit inside.
I honestly can’t explain in enough words the pain they cause.
Gradually, a combination of things led mum and dad to be worried enough to reach out to my GP once more in desperation. I signed the letter but honestly expected nothing. They couldn’t and didn’t help before. A top neurologist ran out of options. A&E couldn’t help. What would be different now?
Well, it seems a lot can be different. I had a phone consultation a week ago and my GP asked, had anyone ever mentioned Trigeminal Neuralgia to me? No. No, they hadn’t. Well my goodness, if you Google it like we did, it explains my symptoms and experience to a T.
“Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.”
“Trigeminal neuralgia is usually caused by compression of the trigeminal nerve. This is the nerve inside the skull that transmits sensations of pain and touch from your face, teeth and mouth to your brain.
The compression of the trigeminal nerve is usually caused by a nearby blood vessel pressing on part of the nerve inside the skull.”
It is a very rare, chronic illness that affects only 10 in every 100,000 people in the UK. If you have A Typical, the type that affects the entirety of you face, it’s even rarer…I mean, it would be me wouldn’t it?! What was even more interesting was the fact that the symptoms can disappear, a form of remission, for several weeks, months or years but can then be triggered again and return with a vengeance…another tick to my experience.
Granted, there are no tests that can show this up, it is diagnosed by a patient who explains their symptoms; I still find it staggering that it’s taken five years for anyone to have made a link.
And here’s the good thing, although there isn’t a cure, there are treatments to try! I have started a low dose of anti convulsant medication..I’ll let the NHS explain it for me…
“An anticonvulsant medicine called carbamazepine which is often used to treat epilepsy, is the first treatment usually recommended to treat trigeminal neuralgia. Carbamazepine can relieve nerve pain by slowing down electrical impulses in the nerves and reducing their ability to transmit pain messages.”
Over time, I will be building this medication up but it has to be done slowly. The side effects I’m experiencing already aren’t much fun – unsteady on my feet, even more fatigued, feeling like I can sense my brain pulsing in my head…it’s very bizarre but as always, I will try ANYTHING. And the good news is, if these don’t help or continue to not agree with me, there are some other options – including surgery to open my skull and remove any blood vessels that are compressing the trigeminal nerve!! (Really don’t fancy this option so if you could keep your fingers crossed for the drugs, I’d appreciate it!)
I’m still learning about this condition. I can’t tell you the relief that I have a proper name for it: pins and needles always seemed so flimsy and never conveyed the pain that riddles me on a daily basis. But now, I don’t feel like I’ve been imagining or exaggerating the feeling. In my research, it’s described as one of the worst pains an adult can experience – so it feels like I am justified in having been locked down, not worn make up, turned down trips out, not enjoyed a single minute of the sunshine this year..it is real and it is recognised by medical professionals.
I’m publishing this blog today because apparently October 7th is Trigeminal Neuralgia Awareness Day, haha I am chuckling to myself because I really don’t want have another string to my bow in chronic illnesses to raise awareness for but, I know so many of you have followed my “journey” and might find it as interesting as we have.
So, this is just the very beginning of trying to treat them. I will keep you updated and let you know how it all goes…I mean, skull surgery would make for a great blog post wouldn’t it?!
Keep safe and well,