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[Poppi]

Hi,
I know this has been mentioned a few years ago but maybe there are other/new members who suffer from this? I won't go into my background of being diagnosed with this in 2015, but a fabulous GP spotted it after one visit to him (after about 4 to my dentist!) I have been on tegratol 200mg (3 a day) and I'm fine. Well, was fine until we went away on holiday on 21st Oct and accidently, I only took 2 a day for 7 days,  instead of 3 for 11 days. I didn't realise this until we had 5 days hols left and there were 3 pills left. Anyway, it was almost bearable with some paracetamol (I had no choice!) but on the way home last night the throbbing feeling of horrendous toothache+sore gums, earache was the worst pain I've ever had. In the house, one tegratol and 2 co-codamol 8/500 and I waited for some relief.............and waited.............we unpacked, cup of tea, texts to family then took my prescribed 3 amitriptyline (for degenerative disc disease) and pain gone by the time I was ready for bed at 10.30pm. Then at 3.10am, RAGING throbbing and pain so I took 2 tegratol and 2 co-cod again, pain went and peace+quiet till about 9am after breakfast. I took one tegratol+co-cod and felt dizzy, had blurred vision and the bloody pain again. Nothing more but I feel so tired, TN coming and going but bearable-ish (not taking anymore pills till maybe bed time when the dizziness and tiredness won't be so much of a problem).

Oh dear, what do I do? Mr. Pop has a bad cold - could I have a virus as well as TN flaring up again? If I'm no better over the weekend I will go to GP. My head is thumping but I'm scared to take co-codamol or paracetamol as the dizzy feeling is awful.

Thanks for listening ladies and in advance for offering any solution.
                      Poppi x

[Poppi]

Meant to say that I read a fab book on hols by a medic who was a dental student when he suffered this. It's also known as the Suicide Disease and needs either medication or a brain op, which is very dangerous but does offer relief (not always permanent!) It also is a sign or sympton of MS. Yes, it's scarey............................
                              Poppi x

[CLKD]

OOOHHHH it HURTS!!!  ........ the brain operation isn't as dangerous as you think!  My Aunt had it twice.  With good results.

Initially the Surgeon in London did a deep injection into the nerve root to see if the operation which be beneficial.  The operation took place 3 months later.  It is done with the patient asleep laying face down, on a specially designed bed.  The Surgeon went in from the back of the head and severed the blood vessel which traps the nerve.  As it pulsates across the nerve the blood vessel causes that sudden, intense, shooting pain in that particular area of the face.  This lasted over 15 years until she required a 2nd operation.

It would cause me to drop to the floor.  The shock and shooting pain was also un-predictable.  When I had lots of dental surgery years later it aggravated the nerve/blood vessel for about 3 weeks fortunately the symptoms settled.


Was the Tregral working?

[Taz2]

Meant to say that I read a fab book on hols by a medic who was a dental student when he suffered this. It's also known as the Suicide Disease and needs either medication or a brain op, which is very dangerous but does offer relief (not always permanent!) It also is a sign or sympton of MS. Yes, it's scarey............................
                              Poppi x

My cousin had the op for this three years ago. It was a great success. The side effects from the drugs she was on for the pain were so difficult to live with that she decided the op was the only way. I hope you feel better soon Poppi.

Taz x

[CLKD]

   Taz

[Poppi]

 Yes, the tegratol worked brilliantly, I feel so stupid and ashamed about taking too many to ease the pain. I took 2 co-codamol at 5pm and going to try to get extra out of my system then take 1 teg at bedtime.
Thanks for your answers, means a lot that you haven't said what an idiot Poppi is  xx

[Poppi]

Would the op be done privately?
     Poppi x

[CLKD]

As far as I know on the NHS.   A GP sends a referral and one gets the appt for discussion.  Then process if required.  Do make sure that an injection is offered initially so that the area can be targeted.

[CLKD]

TRIGEMINAL NEURALGIA is an extremely severe facial pain that tends to come and go unpredictably in sudden shock-like attacks. The pain is normally triggered, for example by light touch, and is described as stabbing, shooting, excruciating or burning. It usually lasts for a few seconds but there can be many bursts of pain in quick succession.

WE ARE Trigeminal Neuralgia Association UK (TNA UK). We provide information, support and encouragement to those who suffer this excruciatingly painful condition.
Our aim is to raise awareness of TN within the medical community and the general public at large. As a registered charity, TNA UK is entirely dependent on donations and annual membership fees in order to continue its work.

We receive no funding whatsoever from central Government or corporate organisations.

The London Clinic is mentioned in the quick search I have done.

[Poppi]

Thank you CLKD
I had the most strange night's sleep last night. Long story short, I slept for 10 hours last night and can't remember waking up with the pain, but think I may have done in a delerious kind of way?
I'm back on track with the regular dose of tegratol, just wish my dh would stop saying I seem in such a good mood today- he too would be over the moon to (hopefully!) be rid of TN!! (I can't compare it to childbirth as my 2 were c-section births 😀)

Thanks for highlighting the TN Association too CLKD, I'm going to look into that further too.
   Poppi x

[CLKD]

I've not given birth but at least once the babe arrives the pain goes away.  With TN it's so sudden  . Glad that you had a better night.