I’m Back On Meds For Trigeminal Neuralgia After 4 Years Medication Free
A few months ago, I posted about how I managed my trigeminal neuralgia without medication.
As of this week, I am back on pain medication.
I have trigeminal neuralgia and if you don’t know what that is, you’re lucky. I have atypical TN in the left side of my face, so I’m in pain all the time. I’m also sometimes subjected to the typical TN shocks down the left side of my face too. I can go six months without feeling the strongest shocks, just with living with my day to day aching pain, and then have around four days of intense pain. I am used to being in pain every day.
The type 1, typical TN shocks being so far apart over the last 4 years has enabled me to come off my regular daily medication. I hated the side effects of my medication and I felt like I could cope with my attacks being spaced out quite nicely. During the attacks, I always feel like I can’t cope, but I somehow make it out the other side and knowing I didn’t have to deal with the strong medication made that worthwhile for me. It’s a decision I’m glad I made a few years ago. I’ve been able to work without feeling drunk every single day, I’ve been able to focus on caring for my baby and I haven’t had to go to bed early just because my drugs have knocked me out.
Over the last two months, I’ve had three bad bouts of neuralgia flare ups. I’ve had days where I’ve been unable to eat. I’ve woken up crying with a shock. I had an episode that lasted twenty minutes last week.
I have been really ill this year so far. I’ve had a cold, my daughter has picked up some kind of nursery flu and managed to give that to me, I’ve had an eye infection, a chest infection, I’ve been sick on multiple occasions for no reason at all and I’ve had the worst flu I think I’ve ever had. I ended up at the walk in centre last weekend, where they gave me some antibiotics for my chest infection and eye infection. My sinuses have been irritated, causing lots of pressure in my face. I’ve been stressed from being ill, stressed from being in pain and absolutely bloody knackered.
Several factors have contributed to my trigeminal neuralgia flare ups over the last couple of months. Stress has been a big one. The sinus pressure is another big one. Being ill and run down in general hasn’t helped. Having to blow my nose has triggered my pain, as has coughing.
My flare ups of pain have been horrendous.
I’ve been saying to my partner for a short while that I might consider going back on medication, but over the last week, I had the most intense feelings of hopelessness and knew I couldn’t last any longer if my flares were going to be this close together again.
I rang my (new – long story!) GP on Monday this week and she put me back on pregabalin (to fight the shocks) and amitriptyline (for my atypical pain), just like I was on before. My pain was so bad when I requested the call that I couldn’t find the words to tell the receptionist I had trigeminal neuralgia and I didn’t have the energy to explain what it was. The pain was so strong that I lost my head and only could spell trigeminal as far as ‘T R I’ and then my brain just gave up.
My GP has also, at my request, referred me back to my local pain management clinic, because I definitely need help deciding what medication I should be on and some support for myself, especially considering I run support groups for others. I definitely will want to change my medication, but I need to speak to some specialists in facial pain, not just my GP.
I’m working my way up from a starting daily dose of 10mg of amitriptyline and 50mg of pregabalin to the point where I can hopefully minimise the pain of the TN shocks. Medication has never fully taken away my pain, it’s just reduced the flares for me. This is my best chance at living this year fairly normally.
I feel pretty bad at the moment. I think I’m almost recovered from my chest infection, but I still don’t feel great in myself. I think I can handle the drunk feeling from the pregabalin when I increase my dose slowly over the next few weeks, but the side effects of the amitriptyline are just awful for me, even when I’m just on 10mg.
The side effects for my type of medication can start straight away, but it takes a while for them to build up enough in your system to help tackle the pain. I’m left with a dry mouth, extreme hunger, limited vision at bedtime, fatigue and (until the medication does something) a sore face.
I kind of feel a little defeated and disappointed that I’m back on medication, after having a few years free of the side effects, but I’m also glad of the help. I cried with relief a few days ago at the thought of not having to deal with the attacks to their full intensity.
So here we go again, I guess.
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I’m inspired by your strength and insight on TN. I have it too. I don’t think I could have the courage like you to stop the meds. Recently, I had to increase them after 10 years strong on a low dose. I look forward to reading more about your journey and advice on how to overcome a condition that can bring anyone to their knees. Stay sweet and remember kindness matters to yourself always.
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I feel for you so much. I’ve had Atypical TN on my right side, diagnosed in May 2020. I too have had moments where I didn’t think I could make it through a flare. The crushing head pain at my temple is the worst. I really hope you find relief, no matter how much. I have managed without meds since diagnosis, though I’ve used medical marijuana, but it hasn’t been easy. I live alone and that makes it very hard too. It can sometimes feel like I’m not living at all. I have a 25 yr old son and he is my “why” to keep fighting this nightmare. Hang in there, you are needed.