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Chronic pain

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Original poster

Trigeminal Neuralgia

19 replies

wingliner · 07/07/2022 00:46

Hi.
I have recently being diagnosed with trigeminal neuralgia, I have been prescribed tablets which are normal tablets for seizures or bi-polar but they also prescribed for nerve pain.
The tablets are already working and I have been pain free for 3 days - I feel like a new person! May I pray this continues.

I fast between 12-15 hours for weight loss, which is working so I don't want to stop but I have to take the tablet twice a day - any advice?

Also I wanted to know if anyone has any tips if the pain comes back and has anyone had an operation for the condition which was successful?

All help is much appreciated - thanks.

OP posts:

Hapoydayz · 07/07/2022 00:55

Hi, my mum has this and so sorry to hear you had that level of pain. She managed great for years on meds then they seemed to stop working. She had an op and has been pain free for 5 years. Life changing. There was a time she was collapsing in pain but now back to a normal life. Keep up with the meds and go back if not working to change type/dose. The 3 day relief must feel great!

Original poster

wingliner · 07/07/2022 01:00

Hi. I had it for a number of years, and health experts couldn’t work out what it could be. Originally they thought it was teeth related - the normal wisdom teeth etc but no it turned out to be this.
I have been put on waiting list for an op but I am looking at a 47 weeks wait - 47 weeks! You know what it doesn’t matter I have suffered a long time and now that I have the medication life seems brighter again.

The pain was so bad, so so bad. It used to make me miserable when it was really bad, I didn’t want to go out, speak, eat - anything really. This medication is truly amazing - like I said I feel like a new person! I wake up and I am like ‘I HAVE NO PAIN!’

Can I ask what level of operation did your Mother have? Plus did they ever get to the bottom of what caused her nerve damage?

OP posts:

RockinHorseShit · 07/07/2022 01:02

I can't help on your first question, but my tip would be to see your dentist & ask for X-rays to show any deep infection. My TM has turned out be caused by a pocket of infection under a poorly done crown, when I'm run down, this was causing the lymph gland under my ear to swell & pinch the Trigeminal nerve, causing TM. I haven't had the surgery on my jaw yet, but now I know about the dental, I'm managing with extra vitamins etc to boost my immunity & lessen the infection flare ups & so lessens the TM flare ups,

Glad you have pain relief that's working, TM is nasty 💐

Original poster

wingliner · 07/07/2022 01:10

Thanks for messaging.
my dentist has done every X-ray under the sun and he cannot seem to find anything.
I did get punch in the right side of my face which is where the pain was, the punch was a few years ago and was from the father of my child but other than that when they asked about trauma that’s all I can think of. I haven’t had any falls or car accidents, which is what they also asked about.

Are you on anything kind of medication or just vitamins.

Honestly I thought I was going mad. When they diagnosed me it was such a relief.
What will happen with your crown???

OP posts:

RockinHorseShit · 07/07/2022 01:24

Are you on anything kind of medication or just vitamins.

I have other health problems that means I don't tolerate many meds well, I tend to get the worst of any side effects. I do have codeine which I have used for TM & it does help quite a bit

Honestly I thought I was going mad. When they diagnosed me it was such a relief.

I had the same, endless trips to doctors & 3 to A&E. 3rd time they spotted the swollen lymph gland pressing on the nerve. They didn't have a clue why my gland was swollen though. I learnt that more recently after changing dentists

What will happen with your crown??? the pocket of infection is in the jaw under it & has apparently damaged the bone, so apparently it all needs taking out, cleaning the infection away in the bone, packing out & putting the tooth back... I didn't ask too many questions as I'm not a fan of dental hospitals after having a bad experience when I was younger. They are sending me to Kings College in london for the surgery, which I think will be fine, but I'm not wanting to know too much tbh.

Starrr123 · 05/08/2022 21:18

@wingliner Hi! How are you now ?
mine started from getting covid!

what caused your TN? X

Original poster

wingliner · 05/08/2022 23:32

I don't actually know.
The doctors and dentists have traced but through my medical history but they can't seem to find anything at all

I don't even know what kind of things can cause TN

Do you?

OP posts:

Starrr123 · 06/08/2022 09:20

@wingliner Viruses, dental work and things like MS. Even a tight neck could be making things bad.

im currently on Amitriptyline, but my pain went away for like 4-5 months. Now its back but ive been super stresssed! Which can make it worse! Xx

Starrr123 · 06/08/2022 09:23

What is the meds called that your on?
and how it your pain? X

FlorianImogen · 06/08/2022 09:33

I had this for well over a year after root treatment on a back tooth. The tablets you describe made me feel weird so I lived on paracetamol. It only went after I had the tooth pulled out.

IncessantNameChanger · 06/08/2022 09:41

I had this. Neurology thought it was a weird migraine but I'm not so sure. Was on amitriptyline for months then onto epilepsy medication. I had a MRI for a brain tumour while on the epilepsy drugs and when I stopped them it never came back.

I personally think it was a misfiring nerve that needed to reset. Think high blood pressure started it as it started after I got pre eclampsia. No injuries. Bloody horrible

AnnaMagnani · 06/08/2022 09:54

Check with your pharmacist whether the tablets have to be taken with food, they more than likely don't.

In terms of if the pain comes back - the most likely thing is to up the dose of tablets. Or try different tablets. There are a lot of different options to go through before surgery.

I've met a lot of patients with trigeminal neuralgia and never met one who had surgery.

SierraSapphire · 06/08/2022 09:55

How old are you? I was misdiagnosed with TN and told that lots of women got it around the peri menopause as your blood vessels change with age they can then press on your nerve. The op people have is called micro vascular decompression and they put something between the blood vessel and nerve. There's a UK TN Facebook group that may help you with questions.

RosyDawn · 07/10/2022 15:18

I was diagnosed with it in Feb 21 (aged 49). It’s the same place where I had shingles over 15 years ago but they think TM not post-herpetic neuralgia.
I took carbamazepine (Tegretol) for about six months, a fairly low dose. Have been off it for around a year but am getting some twinges atm and wondering whether that means another bout is coming. And therefor whether I should go back on them.
Will call the doctor but interested to hear what others do who are off the med when an odd twinge appears.

Starrr123 · 08/10/2022 07:27

@RosyDawn by a twinge how would you describe that? Xxx

B1pbop · 08/10/2022 07:39

Check out Alan Gordon - book ‘The Way Out’ and he is alantgordon on Instagram - he’s part of the Curable app crowd. Also look up his podcast ‘Tell me About Your Pain’. If the pain has come out of nowhere it could be an indication that it’s neuroplastic pain rather than anything structurally wrong. The Curable app talks about how to reduce/eliminate this sort of pain and has a lot of information - it does cost, but there’s also a lot of information free online. Also see Nicole Sachs’ website and her podcast ‘The Cure for Chronic Pain’.

RosyDawn · 11/10/2022 08:01

Starrr123 · 08/10/2022 07:27

@RosyDawn by a twinge how would you describe that? Xxx

It’s not the kind of relentless stabbing I had with a full on Trigeminal attack but I can feel there’s a bit of a headache in the same place that occasionally has a sort of pulse that hurts a bit more.
Interestingly I decided to ignore it and it’s more or less disappeared now so perhaps it was a common or garden headache.

whirlyhead · 01/01/2023 17:49

i had it for 6 months many years ago and it was horrendous. The worst pain ever. My doctor put me on gabapentin which worked brilliantly as I had no more pain. I also had a consult with a dental specialist and it turned out that a wisdom tooth was leaning on the nerve. I had the tooth removed and have had no problems since (15 years ago now). You all have my sympathy.

Original poster

wingliner · 31/12/2024 00:00

@whirlyhead

I am still on the various medications they have given me, they muck around with the dosage every now and then. It can be the worst pain ever! Strange enough I had a very sore ear and clicked when I rubbed it, used some olive oil and a hold load of wax come out over the coming days. The pressure released itself - think it might be something from that pushing on my nerve. Hasn't completely gone which is a pain!

OP posts:

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