Another newcomer here

[tufty]

Not a club I wanted to join but hey ho:(
Mine started a few months ago after routine dental work. In hindsight there were signs before hand that nerves weren't right..I went to the dentist because of tooth pain in teeth that looked fine, culminating in unneccessary extraction.. no relief..pain spread. Doc have diagnosed me with TN, although I would say mine is not quite typical, I have more searing burning pain than electric shocks..for now. It sucks.

I am on amitrypitiline (building dose up..no real effect yet) and am about to start Pregebalin (Lyrica) Tried Carbamazapine and had to stop after only a week as it made me sooooo sick.Also taking 'normal' painkillers which do seem to help take the edge off a little.

I have four children and a full time job and am really struggling to cope as the pain is dreadful and I'm frankly terrified that this is is for ever.

I live in the UK and am awaiting a referral to a dental neuro, although I'm not sure what else he will suggest. Until this happened I never took any pills and am horrified at what |I'm having to take just to get thro a day.

Sorry for moaning, hope to meet people and espcecially is there anyone from the uk here who can tell me what the support is like?
Tufty

[gene1950]

Welcome to our fortress of solitude, a place mostly unknown to others except TN members, their friends, and allies.

[saraiderin]

I am sorry you had to join us but, know that you are welcome here.

I would check out the Trigeminal Neuralgia Assocation. They have a chapter in england. They can be reached at: www.endthepain.org

Sarah

[ToTs11]

Hi Tufty,
Welcome to the forum, though sorry you have to be here and in pain.
I am in the UK and I also work for the TNA here, If I can help I will do.
I can send you an application pack with an information booklet to help you.
We also have lists of neurologist who specialize in TN all over the country, so this maybe helpful when you ask for your referral.
Many of us here at the TNA suffer or have suffered TN, I myself have bilateral TN.
Nikki (FizzBw) on this forum is also from the UK and helps out on the email helpline at the TNA (help@tna.org.uk) along with two others Tina & Hilary, you may have already heard from them if you have used the new Uk TNA Website forum.

Everyone here on Braintalk is so helpful and often know more about this condition that the medical world, so ask any questions you want answering and if they can help they will and also offer support and kindness.

If there is anything at all I can do just drop me a line at Tots38@AOL.COM

Tracy x

[bilateral]

Hi Tufty,

Welcome to the forum, although I am sorry of course that you have TN. It must be very hard for you with a fulltime job as well as four children to look after.
Are your children still young? Do people at work show any understanding of the pain you are in?

You'll find the book on TN "Striking Back" really helpful! I think we probably all have copies that we keep referring to!

I hope you won't have to wait too long for the referral to the neurologist.
Let us know how you are going on?

Take care,

Anne

[LionPaw]

Hi Tufty --

You are not alone. I have the same type of TN you do, some call it atypical or TN 2. Mine also came on after a dental procedure. I also run my own business so work full-time and am responsible for handful of employees, too -- quite a challenge when it feels like a cigarette lighter is always on next to your face.

TN is a nasty thing to have, no doubt, but it will come and go (usually) and you will learn things to avoid to reduce the amount of acute pain. Balancing the side effects of the meds with the pain relief they sometimes give is a real challenge, and one I have not mastered after three years of trying to tame the TN beast.

Please know that there are resources and people who care and some who achieve total relief. There is hope. (I sometime need to remind myself, too.) You have landed on a good spot for support and information.

Take care,

LionPaw

[Pennyann]

Hello. I am pretty new here myself. My pain has returned after my surgery, MVD, 12 years ago. It is very frustrating especially when you are just starting out. Getting treated for things you don't have all the while still in pain.

[crysopac]

hello hello hello. How are you doing with the kids and tn? I am sure not that great in your mind. Well let me tell you that it takes a great parent to take the pills. To get up in the morning. To love them unconditionally. To do this normally makes you a great parent. To do this with pain makes you awesome. It is hard. I am not the only mom here that deals with TN and I think they would agree with me. You are doing great. You found a good place to come vent and ask questions. These people even let you talk about things totally unrelated to TN. I love these guys. Welcome to the family.

Crystalina

[allih]

I also have Type 2 TN and went undiagnosed for over ten years. In that time I had a root canal done twice on the same tooth, had numerous episodes of painful teeth that would suddenly get better, and CONSTANT pain in my cheek for weeks at a time.

It wasn't until my whole face was affected before we figured out it was TN. Neurontin (Gabapentin) works well for constant pain. I've been taking it for 2 years and it does keep 90% of the pain at bay.

I'm so sorry you had to join our group, but you've come to the right place. I've gotten more advice and information here than from my doctors.

Good luck
Alli