I started with trigeminal neuralgia (‘TN’ from now on to save my fingers) back in 2008. I had MVD 2 years later, in April 2010 when I was 22. I consider it a successful operation, giving me 10 years of pain-free relief.
In August 2020 my pain started again. For a month I coped as best I could. I didn’t want to go back on the medication because I remember how bad the side effects were. I started back on 1-2 pills per day of carbamazepine (tegretol), 100mg each. I’m currently waiting for an appointment to see my surgeon to discuss next steps.
During this time (it’s been since September since I initially reached out to my surgeon’s PA; so with COVID, I have been waiting 4+months) I have researched a LOT of different at-home remedies to try to alleviate the pain as best I can (in addition to the carbamazepine) and wanted to share them, to hopefully reach someone who needs help.
The remedies I’m going to talk about are split into these areas:
- alternative therapies
- mental health
- food, drink & vitamins
Some of the suggestions are weird – but take it from me, they WORK. I’ve also added YouTube videos, Amazon (product links) & website links supporting my suggestions where relevant. None are sponsored or endorsed in ANY way.
Warning: I’m not a doctor, nor am I suggesting you come off any prescribed medications. I am a TN sufferer/survivor. I want to share what I’ve found because they have helped me – my pain has reduced from ‘unbearable’ 12/10 to ‘good’ 3/10. If you decide to try something, try it carefully – don’t go in all guns’a’blazing, just incase it isn’t for you. My contact details are at the bottom if you’d like to chat first 🙂
Towards the end of October I was desperate for relief. I found research online where people got relief from acupuncture, so I found a professional who I’ve been seeing weekly. He believes my TN has returned because my body is in a constant tense state (from the TN pain & waiting for the pain).
For years I’ve had shoulder and back pain – both on my left side (also my TN side). My acupuncturist (“Mark”) believes if he can help to relieve my shoulder pain, he can start to chip away at my TN pain because they are connected. It’s a form of Chinese medicine, where your whole body is connected through qi (pronounced ‘chee’). Qi needs to flow smoothly through all parts of your body in order for you to have good mental & physical health. I have blockages of qi, so that’s what Mark is helping me fix. He puts needles (very small; 2 inches long but he puts about 3mm in my skin) in certain parts of my body, mainly my feet that connect to my whole body. He says he is drawing energy from my head (where my TN is) using acupuncture in my feet to relieve the blockages.
Some of what he tells me I think, “okay that’s too far out for me to believe”, but honestly, my neck, shoulders and back have never felt better. He’s shown me how my posture is also having a negative impact on my health. From leaning too far forward, it’s forced my neck to support my head, instead of my head being supported by my spine. This has caused a wealth of other problems that I won’t go into.
I don’t think at this point, he’s directly impacted my TN pain, but by helping me feel more connected to my body and reducing other pain, it has massively helped my mental health and my ability to cope with the TN pain.
Seeds for acupressure
I believe this practice has single-handedly reduced my TN pain more than anything else. It is the process of tapping into acupressure points with seeds. Yep, I completely agree this sounds NUTS, but the 1 day I forgot to do this before bedtime, the next day I had TN pain back to unbearable levels of 9/10. The day after (when I then remembered) my pain was back down to 3/10 – coincidence? I think not!!
Whilst researching acupuncture, I found this video on YouTube – it’s an Indian doctor showing how to use seeds & magnets to reduce TN pain. The video isn’t in English but he shows you what to do. At first I thought it’s a load of rubbish, but then I read the comments – people are actually writing to tell him, “thank you” for relieving their TN pain. I decided to have a further look into it – why the hell not?
I couldn’t find the magnets anywhere so I bought the seeds he mentions. I actually bought 2 types, both from Amazon; fenugreek seeds (£6.99, here) and these seeds, called ‘ear seeds‘. People use them for all places so I don’t know why they’re called ‘ear seeds’… but anyway. Each night I add both sets of seeds to my left hand (my TN is on my left side). I add the seeds directly on specific acupuncture points, which provides a tiny bit of pressure for as long as I keep them on for (sometimes days). The ear seeds are enclosed in a tiny plaster, so they stay on for days. I use a bigger plaster to enclose the fenugreek seeds on my skin, covering both fenugreek and the ear seeds. I put both types of seeds to the same areas. I’m hoping this explanation makes sense; I’ve added pics below so you can see what my hand looks like.
I also add the ear seeds to the side and below my left ear, after some research showed these particular pressure points also helped people with TN pain. This is the article which says that acupressure points SJ17 & SJ21 are important, so I add the seeds to them.
I strongly believe my TN has reappeared partly because of the amount of stress I’ve had in 2020. It has been the most stressful year for me, ever. Stress has a massive negative affect on the body; your body releases chemicals which puts your body into the ‘flight or fight’ mode. This makes your body tense, which is great for small bursts when needed (such as getting out of a dangerous situation) but too much, too often, leads to burn-out and all sorts of other bad health risks. I won’t go into detail here, but Google it to find out more.
I have been doing these things to help me cope better with my TN with regards to my mental health by alleviating stress:
More sleep – I’ve been sleeping more anyway because of the meds (a lovely side-affect) but going to bed earlier has really helped me remain less tired. One factor for me is when I get tired, the TN pain hurts more so it’s often worse at night. I believe this is due to my coping ability and how it’s been depleted throughout the day. For example, pain in a morning I can cope with more, because I’m less tired so I can put more energy into getting through the pain.
No booze – the booze doesn’t make my TN pain worse, but it makes me suicidal the day after I’ve had any because of the medication I’m on. This is yet another side-effect of the medication. Just before Christmas last month, I had a virtual Christmas party with my work colleagues. We each had our favourite booze to drink whilst enjoying the party. During the evening I had 5x 500ml Kopparberg Rose Ciders, so I wasn’t drunk but I was tipsy. The next day, I hardly got out of bed. My mood was the lowest it had ever been – probably ever. I was suicidal.
Tapping – yep, you read right. Tapping aka Emotional Freedom Technique (EFT) is holistic healing that’s becoming really popular. It’s similar to meditation in the way it calms down your body. You tap certain places on your head, face and chest, known as ‘meridian points’. I first found a guy called Brad Yates on YouTube and this video that I watch almost daily is only 8 minutes (it’s had 315K views). I’ve since downloaded an app by The Tapping Solution that I use as well as Brad’s video. The videos help me calm down, focus my energy and I genuinely feel so much happier, calmer and ready to take on the day (even if lots of pain is on the horizon). Try it; it’s only 8 minutes, you’ve got nothing to lose.
Food, drink & vitamins
Caffeine – there aren’t any studies (that I’ve found) that say caffeine affects TN pain, but I’d personally stay away from too much. It stimulates the nervous system, which cannot be good for people with nerve pain. I have 1 cup of coffee in a morning, then switch to decaf for the rest of the day. I used to drink 3-4 per day, but slowly started to reduce and switch it with other nice drinks, so I don’t feel like I’m loosing out on a nice drink.
Alcohol – I’ve mentioned this in the ‘mental health’ section too. I stay away from alcohol as it affects the medication (carbamazepine) I’m on.
Capsaicin & Capsicum – “Capsaicin is an active component of chilli peppers, which are plants belonging to the genus Capsicum”. I came to research these after reading the book, Foods that Fight Pain by Neal Barnard. Both are mentioned several times throughout. In simple terms, they make the nerve fibres unable to transmit pain messages. I’m currently taking Holland & Barrett Cayenne pepper pills, (£6.99) twice daily, which massively reduces my pain. It contains naturally occurring capsaicin. I take 1 in a morning along with a carbamazepine, then another in the afternoon. Then I don’t need another carbamazepine until I go to bed. Be careful though – they support weight loss (too much & you’ll be visiting the loo!).
Capsaicin – ‘a quick fix for TN’ – this doctor describes how he’s cured his TN by using capsaicin as a liquid form in his mouth & leaving it there for a short time (it’s very hot remember; consider this a warning!) – See his YouTube video here.
CBD Muscle Balm containing capsicum – also from Holland & Barrett but instead of something to swallow, this is similar to Tiger Balm in that you rub it on like a balm & it targets muscle/joint pain. At first I thought it wouldn’t help my nerve pain because my problem is at the trigeminal nerve behind my ear, deep inside my head. But this balm helps numb where the pain is; at the left of my lip and cheek. I cover these problem areas (carefully) at night, and in the morning, plus throughout the day when I remember. It makes my eyes water because it’s a strong smell, so I don’t use too much, but I couldn’t be without it now – I 100% believe it is contributing to my reduced TN pain. I got the bigger tub £19.99/100ml but they do a smaller version, £8/50ml.
B12 vitamin – this is widely reported to support nerve pain, but I have found it makes mine worse when taken in large doses. Always check the label. The B12 vitamins I was taking were 40,000% of the daily recommended – far too much! I now take a daily B Complex vitamin, which gives me just 100% of what I need, plus the other supportive B vitamins.
I genuinely hope you find pain relief from something I’ve written here. If I find anything else, I will add to this. If you want to chat to me, I’m very much open to helping others – email me here (remove the spaces): hello @ rachrobinson.co.uk