Lupus and Trigeminal Neuralgia.: I've been ill for... - LUPUS UK

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Lupus and Trigeminal Neuralgia.

larryuk
larryuk

I've been ill for around 12 years now (I'm 59) and now diagnosed with Lupus. But an accident 3 years ago brought on TN. I've been on Gabapentin for the face pain, I take around 20 tablets a day in total. I thought last week I'd cut the Gabapentin out to see if I'd be ok without it now. What a mistake. After one missed tablet It flared straight back up. Half of my face. Plus my Lupus seems to have flared up too. It gets overwhelming. I'm single and my sons (33/36) just give me abuse and can't see that it's not in my mind.

13 Replies

Then your sons should be ashamed of themselves! 😡 one is the most important things is to have understanding this make me feel sad for you 😘xx

larryuk
larryuk in reply to Olibop

Like many other people. If they can't see an illness, it must be in the mind or easily remedied. Thanks for the reply.

Olibop
Olibop in reply to larryuk

I know it is hard for our family’s to cope with too xxx

Lisacp
Lisacp in reply to Olibop

I don't think anyone believes my tn is a real thing! I don't have Lupus but have Sarcoidosis among other things...could the tn come from it?

Olibop
Olibop in reply to Lisacp

I don’t know sorry xx

I think that its a man thing having this idea that everything should be fixed.

I also have trigeminal neuralgia & take carbamazepine . When is the last time you saw a neurologist ? Perhaps you could get an update on your meds ?

It is awful the cocktail of medication we all take for one thing & another but need to find out & keep the ones that are working for us & with our lupus meds

Hi larryuk

I'm so sorry you are suffering so badly.

I don't know a much about TN. However, I have 2 acquaintances (one church member, one walking group member), who suffered TN. The two ladies do not know each other, as far as I am aware. Yet, they have each described to me their memory of the 'worst imaginable pain ever'! I cannot believe it is a coincidence! I BELIEVE YOUR PAIN IS AS BAD AS YOU SAY.

it is very, very sad, that your son's don't believe you, and cannot empathise. Again, the two ladies I refer to said the same about their families. It doesn't help when consultants appear to provide endless pain relief meds, without offering better solutions. Thus, families and friends, just think, it can't be that bad. This I know, from my own autoimmune disease experience. What the eye can't see.....

One of the ladies, decided that she could bare the pain, no more. She used half her monthly state pension, and booked an appointment with a specialist. At first appointment, she was offered an operation to release the T nerve.

Luckily, she had the opinion on the NHS. Has been pain free since.

The other lady, told me the pain subsided naturally, after a gruelling eighteen months.

I urge you, to ask your GP to get you refer for a 2nd opinion. And, please ask GP and specialist, about the operation.

Both ladies told me, the pain is unrelenting, severe, and causes serious depression. Both ladies, are otherwise, as strong as an Ox. I bet you are too. Find that strength, and see your GP asap.

I will be thinking of you, and pray you too, get a good outcome.

Good luck. X

TN is known as the suicide disease as up to 25% of sufferers commit suicide. I got hit in the face accidentally with a piece of wood. Within a few days I had neuralgia. It was all teeth in the left side of my face with toothache and the pain branched up into my cheek, nose and forehead. I'd be walking around my garden at 2 am biting on a toothbrush. I eventually broke two teeth and now have a brace for bed. The biting is called 'Bruxism'. I was first put on two Gabapentin a day, but that was too much. I was like a zombie. So I dropped it to one a day. I have morphine for my back pain (disc problems from 45 years in the building trade) which also helps with face pain. But trying to explain all this to people makes you look like a sympathy hunter. But I'm not. I just live in pain. Thanks for listening folks.

Why don’t you ask your son or sons to accompany you on your next appointment, the doctor may then relay what you are going through.

You so need the support right now.

Your sons should be ashamed of themselves. I hope they don’t live with you! It’s awful to live with someone who expects you to continue as usual when you feel so ill. I hope you find some relief and know that there are people who do understand.

I also have lupus and have had attacks of TN which were treated successfully with CARBAMAZEPINE. The pain was so bad I considered taking an overdose. It also affected my eye and cause uveitis on the same side of my face that was in pain. I haven’t had it the TN for a few years now thank God. When I get a slight twinge I increase my prednisoline to a massive dose and that stops it.

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Larryuk,

Welcome to the LUPUS UK HealthUnlocked Community. I am glad that you have found this forum, we have a lovely community on here that are always willing to share tips and help each other!

I am sorry to hear that your sons are not being supportive at this time, have you thought about giving them some literature to read about lupus and its effects? We have a ‘someone you may know’ booklet which explains lupus – you may wish to give this to your sons to read. This booklet is included in our free information pack which you can download or request here: lupusuk.org.uk/request-info...

Would you like someone to speak to? I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk with your name and address.

Please keep us updated, wishing you all the best.

I feel ur pain especially the EMOTIONAL pain when ur loved ones have no friggin' idea what ur going thru - so disheartening. I hope you get some relief knowing at least ur not alone on this horrible nightmare...persevere & try & keep the ole chin up 😓

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