Am really struggling atm and wondered if anyone could help?
I have bad sle lupus which is quite well controlled but I have just been diagnosed with trigeminal neuralgia. The pain is horrendous luckily I have started some epilepsy medication with has helped a lot. But I haven’t seen my lupus doctors in quite some time. Is this common with lupus?
Does anyone else suffer with trigeminal neuralgia? If so how do you cope? Any advise would be great.
Thanks
Sarah x 😊
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Sarahjj87
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Hi Sarah, I have Sjogrens and get trigeminal neuralgia when a flare up begins. Like you say the pain is disabling and the only thing that helps me is a dose of oramorph ( fortunately received some when I had pneumonia!) I'm not sure a doc will prescribe and dreading when my bottle runs out but might be worth asking.
No just take hydroxychloroquine for Sjogrens, the trigeminal neuralgia only happens at start of every flare and thankfully only lasts day at most.i see rhemy annually but can ring secretary with issues in-between. I'm pretty well controlled presently but had 2 flare ups since Christmas, winter is worse for me.
Hi Sarah, I know it is not quite related but I did suffer from severe migraines several years ago which effected my right side of my head /face /arms /legs and my eyes . lost strength in my right side. and the pain in the head ,back of head and eyes were unbearable. I was eventually put on Topomax ( epileptic drug a non proprietary for migraines) . I am on a high dose of it it is controlled well until 4-5 yrs later I was diagnosed with SLE and put on Hydroxychloroquine is creased totally my migraines. I still do get the occasional triggers or flare up with it My flare up is during extreme bright days light , stress, tiredness and a very bad SLE flare up can trigger it. Most of the time I am functioning normally which is quite nice compared to what I was in 05/2006 - 2010
I find sleep and strong painkillers are the best ways to hit it. If you can be on nortriptyline would be good as well they are nerve pain but they do give you some pins and needles. it has worked really well for me initially during my bad spell As I took it up quite a high dose until it is stable then gradually tail it off slowly weekly and monitoring at the same time whether I get and signs of triggers or symptoms. I was also on volterol.and low dose of codiene(this was only taken if required ) due to constipation side effects which I did not want. But now on Just paracetamol and Tramadol with Arcoxia.
I hope you will be able to find a neurologist who will be able to deal with this effectively like mine did .
Thank you so much for your reply really appreciate it.I am on hydroxychloroquine I’ve been on that for nearly 8 years now.
I do have 30mg codeine for when needed but when this attacked me zero painkillers worked at all. They gave me tramadol which had zero effect and then diazepam which I think helped a little the next day.
It’s really funny you said it effected your right side. Sounds really odd but I keep drooling on my right side since it happened 🙈
Unfortunately can’t have volterol with the blood thinners am on.
But will definitely have a look into nortripyline I haven’t heard of that before thank you.
Thank you I hope you Manage to keep your tn and lupus under good condition x x
Hi Sarah. Sorry to hear about what you are going through I was in the process of being diagnosed with the same thing (lupus and TN) 2 years ago. I had all the symptoms and experienced almost unbearable pain. I also had some other flu/cold symptoms at the same time. After a while the docs figured out I actually had cancer and it was tumors that were pressing on the nerve. Really dont want to alarm you but you but if you havent already I would urge you to get a scan from your doctors. lupus patients have increased risk of lymphoma which was what I had. I was lucky and am in remission but the experience was not pleasant. Sorry for the morose post but just found it eerily familiar and couldnt not post.
Am really sorry to hear about your experience and am so happy you are in remission now.If am honest I have seen while searching the internet about tumours. There was some question of lymphoma with myself when I was first taken into hospital and then diagnosed with lupus. This was due to several areas of enlarged lymph nodes through out my body but when I started receiving treatment these did go down.
The doctors have referred me to a specialist but this was for tmj which they believed I had in the beginning. When I saw my usual doctor he told me to keep the referral as it’s the same doctor that deals with tn?? But I also read that they should scan me due to my age as am only 34??
Really appreciate your message thanks for the reply even if the subject is scary to think about x x
So sorry to hear you are still battling the system getting diagnosed. Its horrible when you are in pain like this. People that haven't experienced it dont really understand.
I was 38 when diagnosed . The doctors still dont know if I have lupus or if the lupus symptoms that I had (rashes and one instance of joint inflammation) and blood tests (positive ANA, AntiDsDNA) were actually caused by the cancer in the early early phase of it. There have been documented cases when cancer can produce those blood results although rare. Im still being monitored but after chemotherapy my anti-DsDNA results are back to normal range and I have no lupus symptoms at all.
Are you otherwise well? I had all kinds of other symptoms that were hard to pinpoint and blamed on other things. Reacquiring minor illnesses -colds and tummy bugs were said to be the result of having kids in nursery. My skin itched that was said to be due to the cold as it was winter. Night sweats that were blamed on the supposed cold or tooth infection depending on who I spoke to... I had one doctor convinced I had TMJ and wanted me to wait months for a specialist consultation. A dentist that was convinced I had a tooth infection and a second doctor that diagnosed me with stress. Finally a trip to AnE secured a scan and led to the right diagnosis. Sorry again for being alarmist but I have lost so much confidence in doctors after my experience. GPs in particular are so busy and often just want to process you though the door and dont really put deep though into your problems.
Really hope you get the help you need and manage to get the pain under control
I have had it so bad in the past. A mouth guard worn it night can be helpful as it stops teeth grinding. Is it in your jaw or through the nose. If in the nose the nerve can get inflamed and can be cauterised which is not painful.It is common in the jaw with Sjogrens syndrome and RA, sometimes warm cloth is nice
I get pain all through my jaw but teeth aswell feels like every tooth has an abscess under it. Not much over my nose but up behind my eyes and head and down the back of my head to the base of my skull.
I will try a warm cloth I keep using a hot wattle bottle.
I did try a mouth guard but I think it actually made my pain worse or could just be coincidence with the flare.
Hi Sarah yes I have trigeminal neuralgia and because I am on morphine for pain anyway it certainly eases the pain. I also have TMJ issues and at times of flare cannot open my mouth much at all. I hope you can get help for the pain xx
Am really sorry to hear about your pain. It’s horrible I truly haven’t felt pain like it before.I haven’t been able to eat since it started I find eating starts the pain again x x
When I was diagnosed I just felt real tenderness around my cheekbones and sharp pain shooting into both ears together with tingling, tooth ache in all my upper jaw. My GP says you have TJN I said I thought that was excruitiating? She said try stopping your morphine. Thankfully I am still on 10 mg twice daily. There is an operation for it if it is very frequent but it is quite drastic I think. I watched the op on a medical programme quite amazing really. Don’t suffer though get some help with it xx
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I was in the process of being diagnosed with the same thing (lupus and TN) 2 years ago. I had all the symptoms and experienced almost unbearable pain. I also had some other flu/cold symptoms at the same time. After a while the docs figured out I actually had cancer and it was tumors that were pressing on the nerve. Really dont want to alarm you but you but if you havent already I would urge you to get a scan from your doctors. lupus patients have increased risk of lymphoma which was what I had. I was lucky and am in remission but the experience was not pleasant. Sorry for the morose post but just found it eerily familiar and couldnt not post. 
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