TN

Hi Paul

It must be a very worrying time for your daughter and family to be confronted by TN especially at her age.

First rule of getting to know TN is RESEARCH, MORE RESEARCH and when you are almost done DO SOME MORE! If YOU don't keep abreast of what is/can/will happen then there aren't many out there doing it for You.

Explore every little snippett and read between the lines and get yourself a collection of sites and forums and the like all as reference material to start.

Unfortunately there is NO ONE FITS ALL solution out there and very little clinical experience in the profession despite so many people suffering world wide.

I started with a slight irritation to the skin to the left side of my face at eye level. An regular eye test for spectacles had the technician quite disturbed that my left eye would not blink or close. The local GP wrapped me up in the 'Bell's Palsy' bag and to wait for it to go away.

I changed to a different GP, I researched the treatments being offerred and fed him what I thought were sites worth investigating. Lickily for me he got on board and worked our way through to what was the best treatment (containment) level for MY condition. I use the word "MY" intentionally and you should be doing so with your daughter and HER treatment.

I ended  up LYRICA (nasty bit of kit but effective pain control of the trigemal nerves. 150, 150, 200Mg spread evenly for the waking hours)

ox carbamazipine (less side effects for me) at 600mg FOUR TIMES A DAY

Topped up with Oral Morphine as necessary for the really bad headaches.

That allowed me to function in a daze really but the alternative was nothing at all

I was lucky enough to have other issues and these brought about the complete removal of the PAROTID gland on the left side of my face. They took with it ALL of the nerves that passed through it and with them went my problems...well most of them.

I have to get going but I will get back and add what I can when I can.

NEVER GIVE UP AND "DEMAND" YOUR GP/SPECIALIST HAS THE SAME ATTITUDE

Paul, I am 67 years of age and I am a retired nurse and I was diagnosed with TN 7 weeks ago.  I understand what you and your daughter are going through.  The carbamazepine took my pain away initially but when the doctor increased the dose I could not tolerate the side effects, plus I was getting break through pain.  I was switched to gabapentin which I am tolerating much better, but we are gradually increasing because I still get break through pain.  I could not have worked during the past 7 weeks, I have tried to keep up with my normal activities and I have the support of good friends and a great husband.  Sorry I am going on and on ...what I am trying to say is that in the past couple of weeks it has gotten better.  I know what to expect when the meds are increased...first day I am hyper, second day my gait is really bad and the second and third day the tears come for no reason....then things settle down.  The people at the national TN association have been very helpful.  They told me and so has my doctor that I need to take my meds every 8 hours to control the pain.  I am currently on gabapentin 600 mg three times a day.  I am booked in two weeks for an MRI with dye and hopefully it will show thenerve compression.  If it does then I will go on the waiting list for MVD surgery.  Research this for your daughter and if you proceed with this have it done in a centre of excellence.  To me MVD is the only answer to this horrible disease.  But in the interim it takes time to find the right dosage of meds and to adjust to the side effects. And I personally have decided I will never have any of the destruction procedures which is all most neurologists and neurosurgeons can offer.

check out dr. Kaufmann in Winnipeg Canada and his website ....best site for info.  Stay in touch.

Hi,

I am sorry to hear of your daughter's problems. But, there is light at the end of the tunnel.

My story is long and involved, simply put, though, I had migraines since my teens (much older now, sadly) and about 10 - 12 years ago they changed, still on the left side of my head but seemed to be focussed in and around my eye. Coupled with a few othe seemingly related symptoms I thought it must Cluster headaches. Spoke to the GP, got nowhere so initially I just lived with the episodes of pain. Then about 9 - 10 years ago I had some major problems with my health following an ear infection, vertigo and a fall leading to neck and shoulder injuries. Still got nowhere with GP so changed surgeries about 3 years ago. Within six months I had my health issues dealt with. My frozen shoulder was fixed, my lady problems fixed and I thought 'great, back to normal'. However, all the aches and pains and feeling generally awful didn't go away, they got worse. So back to GP, blood tests and referral to Rheumatology and ultimately a diagnosis of 'something auto-immune' like Lupus but I don't tick all the right boxes. Needless to say the Eye headaches were put on the back burner, until they got worse.

Over the last 18 months the pain intensified, spread and was lasting much longer. I also started to get tingling, like a spiky-footed spider crawling across my cheek. I also got pain in my cheek, teeth, jaw and ears on both sides of my face including the other eye and stabs of pain in my scalp. I resorted to taking my husband's morphine and Tramadol with no effect. So in desperation after experiencing these episodes of ever worsening , more frequent, and longer lasting pains I went back to the GP. He straight away said it's TN. My existing medication was increased and I was started on Carbamazepine.

I have had to go really slowly in increasing the dose to an effective level due to the fact of my other medication also potentially causing liver problems. BUT, and here's the good news, I have had far fewer stabs of pain on a daily basis. AND, the horrendous episodes of eye pains are much shorter in over all duration, barely a day now rather than the 6 - 7 days previously, Success!! I still have a long way to go to be completely free of pain but there is an improvement. I currently take 700mg of carbamazepine a day in divided doses. What with the other health issues (aways something new and interesting on an almost weekly basis) and all the medication I take I am very fortunate not to have developed any serious side effects, except sleepiness, but that's a bonus in my case!

As Baudwalker says, research everything. and persist in your efforts to find a combination of medications that work best for your daughter. If she has difficulty with her studies until her medication has taken effect she may well be able to defer for a year. She should discuss this with her tutor/university. 

I wish her the best of luck in all regards.

Hello Paul,

As a parent and as a fellow th pwrson, I would tell you try whatever you can, this is the important part, the treatment benefits must out way the risks. Repeat that in everything you learn online schooling, doctors, pain management etc. If the low doses are working and you have read up on all their pluses and minuses, try h ollistic and keep in mind this is a nerve problem. Nerves do not know that stretching, hot rocks and meds you put into the digestive track are for them. Some of the best advice I had was contact mayo clinic for trigeminal neuralgia and ask for someone close to you that has HAD good out come from procedures and meds for this and if you can also get a second opinion or tests to localize the nerve root do you know what's to come. Again as a parent, protect her, ask all the questions until your satisfied and stay strong and helpful, she's going to need help & understanding to all she's experiencing. All my best Paul, I'll keep you in my prayers.