Trigeminal neuralgia

[Sami13]

Does anyone with systemic sclerosis and overlap conditions suffer from trigeminal neuralgia or neuropathy?

[Hidden]

I do - it's one of my more horrible symptoms, along with widespread small fibre neuropathy and autonomic dysfunction. However I suffer from Sjögren's with secondary Raynauds rather than Scleroderma.

The main treatments I've tried are the antidepressant and anticonvulsant families that are also used for relief of nerve pain, such as Amitriptyline and Gabapentin. But I can't tolerate these or other pain relief at all - so I just take Mycophenolate to hopefully tackle my small fibre neuropathy at source and use some tiger balm and Vicks sparingly over the affected areas.

You have my sympathy.

[Sami13 in reply to Hidden]

I have just got my diagnosis letter and I shave sicca syndrome as one of my overlaps when I looked it up it like or the same as sjorgens I have had tn for about 8 years. Didn't have a clue it could be connected until I started looking on the internet. It is by far the worst part of it all. What bad luck we have !

[Hidden in reply to Sami13]

Yep. For me Sjögren's caused chaos and facial pain, amongst other issues, on a daily basis 💩 😏

[Hidden in reply to Sami13]

This might be of interest: hopkinssjogrens.org/disease...

"2. Trigeminal neuralgia and glossopharyngeal neuralgia

Sjögren’s syndrome can cause numbness or burning of the face, called “trigeminal neuralgia.” Pain in the back of the throat, which may worsen while swallowing, is called “glossopharyngeal neuralgia.” Patients with trigeminal or glossopharyngeal neuralgia can have agonizing mouth and facial pain. These neuropathies may co-exist with other neuropathies in different parts of the body. For example, up to 20% of patients with a “small-fiber” neuropathy may also have trigeminal neuropathy.

Medicines which may help alleviate symptoms in small-fiber neuropathy may also have efficacy in trigeminal neuralgia. Such medications may include a class of agents which are typically used to treat seizures, and include gabapentin, topiramate, andpregabalin. In seizure disorders, paroxysmal and irregular bursts of electrical activity in brain nerves may lead to propagation of seizures. Similarly, in Sjögren’s neuropathy, irritative electrical signals produced by nerves in the skin instead of the brain, may similarly contribute to pain. Just as anti-seizure medicines can dampen electrical activity of brain cells, the dampening of electrical activity produced by pain-fibers may ameliorate burning pain. It is important to note that use of these symptomatic medications does not target the neuron-inflammation which may be contributing to neuropathy. In such cases, judicious use of immunosuppressant medications should be considered."

[Sami13 in reply to Hidden]

That is amazing thank you so much twitchyroes. I really hope that the methotrexate for the systemic sclerosis and other things can somehow change the pattern of my trigeminal neuralgia. I take nortriptyline. I have tried all the others but can tolerate them. I have atypical tn so I'm never for one minute pain free. Makes me a really joy to live with 😂.

Thanks again for the link

Sam

[Hidden in reply to Sami13]

Ah I'm sorry Sami. I too have an atypical TN - it mostly affects my gums and lips and is same as in my peripheries. Like someone's wired me up to a pylon!

Mine started just after a few years on Methotrexate - which they took me off in case it was the cause. But as it made me v sick I then moved on and tried 3 others until I got to Mycophenolate. The only thing that really did help was six months on steroids but the price was high as I gained a lot of weight. I can't say I'll ever get used to it and my neurologist wants me to try Nortriptyline now too. But I've just started Sildenafil in case the Raynauds is the cause of my pain. I will only agree try one new drug at a time! I do so hope the Methotrexate works for you. I'm to raise dose of Mycophenolate to the max amount to see if it achieves the same results as steroids - so far I've been in more pain than ever since starting it 6 months ago. Just waiting for my liver ALT to go back down first. X

[LouSkel in reply to Sami13]

Hi, did any of the drugs you've mentioned help with your TN?

[LouSkel in reply to Sami13]

Hi Did any of the meds mentioned above help with your TN pain? Thanks

[Moirawest in reply to Hidden]

I managed to get Pregabalin accepted by my body only by staring on 25mg per day and increasing it every 3/4 days by another 25mg. I take the max dose of 600mg and it has/is so helpful. Neuropathic pain still affects me but I have to cope with this as like you opiates are out of the question. Some medicines make me as high as a kite and I cannot cope with this. Cannabis chocolate made me sick but I would be prepared to try medicinal cannabis when it is available in the UK.

[Sami13 in reply to Moirawest]

Me too. I'd try anything

[Moirawest]

Hi

I have MS with intermitent TN and neuropathic pain mainly in the legs and feet. I also have hypersentitivity noise/vibration and pressure. Other problems in clude Rauynaud's and I need to find out if I also have other problems linked to this because symptoms have worsened. Temperature has always been a problem.

[Sami13 in reply to Moirawest]

Temperature is my enemy too. Too cold raynauds too hot erythromelagia Can't win ! Loud noises and vibrations are really painful. Things like high pitched noise or sirens make my tn worse. I find going on a train and the vibrations very painful. I have started to get the same sort of pain in my toes on one foot and am wondering if it's the start of something.