Relieved to find fellow sufferers!

Hi everyone,

I joined this site today and thought I'd introduce myself.

I am 26 and from Scotland and have had ATN pains since January 2014.

My diagnosis was thrown off track due to having shingles and bell's palsy when I was 17 (March 2006), and was originally diagnosed with postherpetic neuralgia. Since it had been 8 years since I had the shingles and due to no anti-inflammatory, opiate or other analgesics helping the pain, a neuro consultant diagnosed me with TN in November 2014. I was sent for an MRI a few weeks later and it took 5 months for my results to come through, showing unusual signalling in the grey matter of my brain. I was told I would be sent a follow up appointment. This was in March 2015 and it is now July 2015, I still do not have the follow up appointment (this was on the NHS). My GP and I decided it would be best for me to go private and I have my first appointment with the consultant tonight.

I have tried around 7 different types of drugs including duloxetine, amitriptyline, gabapentin, carbamazepine, nortriptyline, pregabalin and 1 other (I can't remember name!) as well as painkillers like co-codomol and tramadol. These drugs either gave me terrible side effects preventing me from working or did nothing for the pain. I still take tramadol which does not help the pain but makes me feel a little less depressed about it!

I also had botox (I have synkinesis in my mouth meaning every time I blink, my mouth "smiles", it causes pain towards the end of the day, this was a result of bell's palsy) but this didn't stop the pain. I had 4 sessions of acupuncture and found the only helpful thing was what looked like a giant, lit cigar held up to the nerve which was very warming and pleasant. I've tried facial massages which again I only benefit from with the heat, not the movement.

My GP advised that the results of my MRI could indicate, but don't necessarily diagnose, multiple sclerosis. Has anyone else ever had results like this?

I am relieved having found this site as I have never spoken to anyone else with the condition before. Makes me feel much less isolated!

Welcome Heather, glad you found the group as everyone is very supportive.


Warm welcome Heather, so glad you found us.
You’re right it is a lot less isolating and there’s a measure of comfort knowing you’re not alone. How did your appointment go?

Hi Heather,am also glad you found this group.This has been a blessing to me for quite a few years. Until others reply back to you, just a suggestion, you could type in " ms and tn" in the search bar and see if any discussions come up.I also believe there is a group on here called “TN and MS” you should be able to find it by going to groups,sorry not a whole lot of help. I just remember before finding this group I thought it was just me and I thought I was going crazy for real, Heather, know your not going through this alone.I agree, this disease is very scary.Red is right, it can take awhile to tell if its helping. You will find what works for you to control this monster so that it doesn’t feel like our lives are nothing but terrible pain and you have a life besides tn. It sounds like you have been through plenty already in your young life. Wishing you the best hon, dawn

Thanks everyone!

The appointment went well, he's given me a prescription for oxycarbzepine, I have had carbamazepine before but not this one.

Also being referred to a neuro-suergeon and a second MRI (not sure what was wrong with the first!) sow I'll see how it all goes.

Fingers crossed for this drug!

Thanks Dawn, got your message after I posted that one. I will search for TN and MS - still finding my way round the site! The neurologist didn't see any phycisal indication for MS so fingers crossed :-) everyone has been so supportive so far, thanks for your message

Welcome Heather,

This is an excellent site; use all the resources offered here, including reading the research and the book, Striking Back. As others have said, it is comforting to know we are not alone. TN seems to be such a misunderstood diagnosis and it can be extremely difficult to find health care practitioners who have knowledge of or experience with it. I hope you find some relief for your pain and some answers.



Welcome to the site!

To be properly tested for MS, you will also need to have a lumbar puncture (spinal tap) to check for Oligoclonal Bands. If the spinal tap shows multiple bands, it will also be an indicator of MS, along with your MRI.

It is not uncommon to have MS and TN together. My daughter has MS, but fortunately she does not have TN. She had one MS attack and then not another one for 12 years. In the U.S., you have to have multiple brain lesions and multiple oligoclonal bands to be given a diagnosis of MS. Her second attack caused the second lesion, so that's when they did her spinal tap. I really wish they had done it sooner because she would have been able to start some treatment sooner. Her MS is now progressive.

If they suspect MS, perhaps you could ask that they do the spinal tap. Yes, it is painful but they can give medication so that you won't remember much afterward. At least then you would know what you were dealing with.

Good luck,

Cathy In MD