I live in a place called Denial :)

Here is my story. I am sure I will ramble on but here goes

About a week before my 39th birthday I started getting this weird sensaton in my ear and face. It's hard to explain how my ear felt except to describe it as a full/hollow feeling in my ear. The facial issue is much easier to describe. It started in my upper jaw area and just felt like almost numbness/tingling/buzzing feeling. Then I noticed my lip and left side of nose felt the same. Almost like when you are coming off of the shot you get at the dentist office for numbing. All of this was happening on just the left side of my face. I was convinced where I had had a root canal was abcessed. My dentist took several xrays, and sent me to a specialist who both couldn't see anything. ( I do suffer from anxiety and OCD). So I made an appointment with my doctor to see. I am typing about this calmly but rest assured I was having panic attack after panic attack envisioning a head full of tumours. In fact when I was in my doctors office I was having a panic attack. I mean half of my face was freaking out and so was I.

The doctor just confirmed that is was probalby my anxiety and changed up my medication. So that didn't work. For the next year the symptoms would come and go and I was still freaked out but just thought it was anxiety and I would have to deal with it.

A friend at work had gone to a new doctor and was raving about how great he was and took the time to listen to her problem. I made an appointment as these sensations starting now moving to my tounge area. I have to say my now doctor was amazing. He spent over an hour going over all my symptoms and we came up with a plan. We would treat the symptoms in various ways to elimate what it could and could not be. He upped my dosage of anxiety medicine and told me to follow up in about 2 to 3 months. I went back telling him that I was still having symptoms. So he did a neurological test and said that went well. Said he thought it was TN but would wait to give an official diagnosis until we tried some other things. I went for an MRI and it came back normal (much to, what I was sure would be a tumor riddled, brain) suprise. He then said yes it was TN. I started on 100mg twice a day of the tegrotol and a follow up appointment a month later.

At the follow up appointment I told him there was no change and he said good because the dose was low to make sure I didn't have any side effects. The he changed my dosage to "theraputic" levels 200mg twice a day. It's been about two weeks and still haven't seen much of a change, but i also forget to take it sometimes. I have noticed a tenderness when I touch the left temple. And my eye area around my left eye gets that numbing/tingling feeling too.

So here are some of my questions.

Can it really be TN if the medicine isn't seeming to help it?

Should I see a neurologist?

Will the pain get worse?

I have asked my dr some of these and had a whole page filled with questions that he already answered. I go back in two months for more lab work.

Feeling anxious and scared about how this is going to progress. For the most part I have been lucky. I have only had the numbness and burning sensations that people have talked about with very little stabbing pains. And have had a headache on one side of my head. I can handle this it's not a tumour and it won't kill me but I get freaked out thinking about having to feel like this for the rest of my life.

Does acupuntiure help?

Can the Sciatic Nerve affect the Trigeminal Nerve?

So many questions.

Any advice or information would be greatly appreciated.

I have been recently identified as TN2. I am also still in the state of denial. I can't accept the fact that my life has changed. I am often crying. Looking at my kids face. I have lost smile on my face since last 5 month.

Sorry to hear that. What also throws me is the fact that I feel like since there is no outward sign of this affliction people don't believe me. Most people haven't heard of Trigeminal Nerve let alone Trigeminal Neuralgia. And until i was diagnosed with it I had never heard of it either. So I think that is part of my denial. I look fine, and for the most part I feel ok, but under my skin there is a jumble of feelings going on tingling/numbness/burning/ and sometimes stabs of pain that no-one can see or tell that its happening. I don't talk about it cause i feel like people wiill just think it's in my head. Like I am making it up or over exaggerating. I was joking with my dr and asked him about getting disability and he laughed and said I was too cheerful for anyone to beleive that anything was wrong with me. Therein lies the problem.

Same here. I never new there is something called TN also a dental issue can create such serious disease. I was always neglecting my teeth and never took a good care of them nor my parents ever told me. By the time I realized that I have so many cavities I was too late. But when I got this TN2 from tooth extraction, I couldn't believe it. I also had a cyst inside sinus chamber which probably happened because of infection. I also did a major sinus surgery to romove the cyst since I thought no I can't have these nerve pains and all. Because I was in the state of denial. Now I am accepting the fact that it may stay with me life long.Do you have TN or TN2. What medication are you taking? Ar e you in USA?

Yes I am in the USA. I have TN I am currently taking Tegrotol 200mg twice a day. It makes me so tired though. I literally sleep most weekends now and always feel tired during working hours. It is nice to get sleep but I never feel rested. My doctor says I should get used to this in about a month. We just changed my dosage. Those are the only side effects I am having right now.

Also going to the Eye doctor today to see about switching to contact lenses as i think the leg of my frames are pressing into my head too much and causing headaches. I still would like another opinion but don't know if I even need to see a neurologist at this point.

I too am in a state of denial.

And don't even like to comment because I think it cant be me.

I do have the numb, tingling ,burning pain over the whole top of my head and my whole palate top and bottom in my mouth.

And think maybe it could be Burning mouth syndrome. Whatever it is it must be some sort of

neuralgia but not TN or possibly TN2

Hi Cubby..

It's hard to say as I'm not a doctor by any means. But I can tell you, nothing was helping me until they upped my meds to the maximum dosage. Which wasn't good.I was up around the 1200mg per day dosage:( For almost 1 1/2 years. Then, it was getting slowly worse so I talked with my doctor and decided to get the MVD surgery done. Been a month now and still no pain:)