Yesterday I was diagnosed with Trigeminal neuralgia and waiting to be put on carbamazepine (waiting for it to be in stock) but instead of looking myself and possibly seeing some scary things I was wondering if anyone has had any problems with taking these? (Like side effects?)
Also I was told by my GP that due to being young (25) it is most likely caused by MS (although not fully diagnosised yet) as it’s more common in people over 40 if MS is not the cause. Is this the case will it be due to MS? I’m not sure how these things work.
Thank you in advance!
Hi,
I’ve previously taken carbamazapine for sharp stabbing (ice pick) head pains. The usually last for around 10 seconds and I believe its similar to TN.
The only side effect I remember is having a very dry mouth in the morning.
You say you are not fully diagnosed yet. Has your GP referred hou to a neuroligist? Or for an MRI.
TN is quite common in patients with MS although there can be other causes. Do you have/ had any other symptoms?
That sounds awful, I’ve got a shooting pain (electric type) from behind ear to top and bottom of jaw and also after the attack which lasts a few seconds I have a feeling like water dripping down my face/jaw.
I have CIS at the moment and I’m under a Neurologist but he didn’t want to make a full diagnosises too soon as my symptoms only started a year ago in April.
My onset symptoms where, headaches, blurred vision, vertigo, fatigue and I then went on to get funny feelings down one side of body and recently had trouble with memory, speech and this TN.
I had an MRI which showed multiple leisons on my brain, spinal MRI showed nothing and LP was negative. Recently MRI in November showed no difference in brain MRI.
I see my Neurologist again in April.
Hope you are well,
Thank you so much for your reply to my worry. I started the medication and so far so good although hasn’t helped ATM but I know it can take a few weeks to kick in.
Beth
Hi its an autoimmune condition When its mild it causes dry mouth and eyes but can be severe and present just with neurological symptoms peripheral neuropathy numbness and one of the main symptoms is trigeminal neuralgia sjrogens can easily be mistaken for MS but need different meds
Hi Beth I’ve just read through your messages and your diagnosis of CIS but as I understand it clinical isolated syndrome means one attack and just once the fact that you are still getting symptoms and still ill means there must be more going on I would request a Rheumatology appointment where you can be tested for auto immune diseases
I haven’t had TN, thank goodness - I am sorry that you have it - but I have taken a short course of carbemazepine for stabbing pain arising from an MS relapse. It definitely took the edge off the pain. I have to say the medication also knocked me clean off my feet with fatigue, which was a reasonable trade off at the time. I’m sure that doesn’t happen to everyone, and I have heard that the body gets accustomed with a longer course and the side effects lessen over time. My experience is that it is a pretty effective drug, and I hope it brings you relief.
@mully
Would that be a blood test? I had a blood test at the hospital when I saw the Neurologist for autoimmune disorders and they came back negative? Not sure if this is the test they do to check? I’ve never really got over fatigue and even if I have a good day I’m still completely shattered within a few hours. Not too sure really why that hasn’t gone
Oh bless you, I can’t stand being in pain. What MG of Carbamazepine where you on? They’ve put my on 100mg which is a small dose I think which has taken the stooting pain away but left me with the funny feeling down my cheek/jaw line so not sure if I need them up or whatnot. I hope you are feeling and doing well.
Hi Beth sjrogens syndrome for some people is dry eyes and dry mouth but for other it begins out of the blue with the symptoms you describe especially excruciating Trigeminal neuralgia but all of the lesions you describe could also be MS It depends what they look like Sjrogens are often multiple small white hyper intensities but I may be wrong but I believe Ms lesions are bigger and generally more identifiable to MS The blood tests need to be specific for sjrogens syndrome So I think you need to find out what blood tests you had I had low dose carbamazepine as my first medication for my TN low dose which I believe has to be increased weekly until the pain is gone but I only lasted one week on it as I developed hyponatraemia so had to come off it now I am on high dose Gabapentin which keeps the pain away but makes me feel awful I hope you get an answer horrible isn’t it? I am having a special MRI in February to look specifically at the Trigeminal nerve as a normal MRI is not detailed enough to diagnose TN properly I think if your pain continues you should demand a proper MRI you can also contact the TN society they also have a helpline with fellow sufferers Good look I hope you start to feel better soon x