I'm also sorry you're here but welcome. I'm with BMW after reading your symptoms. I have both TN and ON and I have a lot of dizziness, but its caused by the medications and some other stuff. My ON pain is in my neck, the base of my skull, and up over and around my head. It also goes into the forehead some. I get eye pain from both condtions, but the TN eye pain comes from the outside while the ON eye pain comes from inside the skull, if that makes any sense to you. It can be hard to describe for me. These are sensory nerves and the TN eye pain I get feels like I'm being stabbed repeatedly in the eye while the ON eye pain feels like a red hot poker is being stuck in my eye from inside my skull. Maybe thats a better description. I have had the trigeminal area in the jaw injected with long acting marcaine and that has caused the pain episode that you described that emanates from the jaw and also leaves you with a #^$# of a headache. The TN divides there into the three branches that serve the face. There is a diagram on the web which shows it. I'll try to find it and post a link. What confuses me is the other symptoms that you describe. Rapid eye movements can trigger my TN pain as can bright light. But then it also can trigger the ON eye pain too. I don't remember if you posted, but did you see a neurologist?

Hi EE03

I saw a neurologist few months ago. He thought it was some huge migraine and gave me the maximum dose of Steroid to break it. I took it for 10 days without any change. I told him about the concussion I had 3 years ago. He didn’t think it could be possible.

I’m seeing a physiotherapist for the stiffness in the back of my neck. It bothers me and I put ice often when I have those head ache. Like today! Moving my eyes to any direction is more painful. The pain is inside the skull right in the back of the eyes. At the top part in the back of the eyes. It’s really hard to explain. Hope this is clearer. It’s there all day long and getting worse if I’m exposing to lights or reading and other things.

When I have those head ache the paint is in the back of my neck were the neck and head meet, but nothing like burning just stiffness and if I move its worse. The frontal lobe right on top of the eyes is the most painful part of the head ache. I feel it right under the skin/hair like a pressure from inside. The eyes and head ache paint are on bolt side but the sharp pain when I eat is only on the left side. When I talk or sleep on that side I can feel something just over where is the jaw joint, closed to the ear.

I’m taking these medications.
The Novo-Betahistine 24 mg 2 to 3 times a day is working a bit. I try to stop taking it for couple days and the dizziness is getting worse. Taking it doesn’t make a huge difference but it’s better.

The Flunarizine 5 mg is supposed to help to prevent the head ache…At the beginning I had head ache all the time for 4 weeks nonstop. Now it’s more 2 to 3 times a week. They still are strong when they come but not as often. When I was trying to work these was getting worse, like at the beginning.

The Amitriptyline 25 mg is supposed to work on the nerve by slowing it…..not too sure about it but since I begin it, it makes the dizziness worse. The Doc said to continue it and the body should get use to it. She is the doc.

The last one is Garbamazepine 100 mg twice a day. I haven’t begin it. I want to make sure I need to. There is a lot side effect.

Thanks all to reply!
Steve

We seem to be on the same page with the ON headaches. I get sharp, shooting, burning pain which starts in the upper part of the neck which shoots upwards to the base of the skull and then branches off from there. If you've read up on ON, they talk about the ram's horn pattern and that fits mine. I also get random hot spots all over my scalp. If they're touched, they burn. I also get the random spots of pain that just hurt. Nerves have a life all their own. I get the constant throbbing headache in the base of my skull and it keeps me from lying on my back. The temple pain is a hard one for me to call as it could be attributed to either conditions and my Pain doc says there is a lot of cross communication between nerves, etc....I couldn't find the diagram I'm looking for since its in the Striking Back book, so I can't direct you to anywhere. Try googling images of trigeminal nerves and you might find one. There is a separate thread on here for ON which is worth checking out. I'm still confused about the dizziness and vertigo. Has anyone checked the 8th nerve (I think that one deals with the ear but my brain is in a fog right now)? Take care and hang in there. EE

I spend the last days to read when I can on the internet. Reading on the internet is hurting my eyes and get me dizzy. Now I’m more confuse than before. It can’t be O.N. because I have pain in bolt eyes and they aren’t red. Normally is only in one eye. Can someone confirm it! I have the blurry vision, movement pain and sharp pain in the back top part of bolts eyes. I try ice before and it hurt more so I will try hot and see if it can help. On top of that I have seen an optometrist, did some test and he said everything was find.

I just spend the last 5 days with a big migraine with eyes pain. I read about post concussion syndrome and I can’t find answer to this question. After full recovery can suddenly the symptoms come back 3 years later? I had couple big concussion in 2006, but they when away. After these episodes, I when back to my normal daily routine. I continue to race quad and car without a trouble. A lot of symptoms I have are matching it. At the beginning I wasn’t able to walk without falling down. It took me a month to be able to walk a little bit more freely. I learn to walk with the felling to be on a boat all the time. But still today when I get dizzy I need someone to help me to walk but I think it’s a normal when you are dizzy to not be able to walk straight. Dr normally will give Novo-Betahistine and your dizziness will get better. For me it did not much. If I stop them I fell a little worse. So I think they are helping a bit.

I don’t know anymore about the trigeminal. I have that sharp pain when I eat and often when I talk I fell a pain radiate around the jaw joint closed to the ear but it isn’t a sharp pain. Just a continuous pain of a 5/10 on the scale of pain! One thing I know was that everything begins after I when to the dentist. That sharp pain that radiate through all the left side when the syringe needle touch something and the burning tongue for a week. I read couple post that people have just V1 pain and not TIC sharp pain all the time. Can some with V1 explain to me your pain and your symptoms please? Or maybe refer me to someone, forums or any article that is specific to V1.

Thanks everyone to take times to read it and to comment!

Hi ALIFE,

Here are my experiences:

I have Trigeminal Neuralgia but not the typical one. It is atypical. That means, it is coming from somewhere else. In my case I have got two information:

1. It is from the neck muscles (there is levator scapula, the muscle)
2. It is from sinusitis. Again, sinusitis is from the neck nerve, called suprascapular.
As I have all three neuralgias: Occipital, Trigeminal and Suprascapular I have studied them.
Trigeminal nerve is divided into three branches:
1. V1 - ophthalmic (over eyes and eye browses)
2. V2 - maxillary (on the face and maxillary sinus)
3. V3 - mandibular (bellow chin).

I have pictures of them but can't post so long as I didn't write at least 10 replies.

I have TN 1 and TN 2.
V1 is over the eyes, comes from frontal head and makes terrible pressure into my eyes. I feel very sleepy and tired. Beside that I have always eyes pains, most of the time the right eye.
V2 is maxillary nerve and is connected with my maxillary sinusitis. There are pains in the nose mucus membrane and between nose and mouth. Very strange is, I am swollen just there. I taught for long time that is from sinusitis, but there is no sinusitis, because there is no hole.
Beside those pains I have also jaw joint pains and right ear pains. When I eat, I have after that pains in the eyes, sinusitis and jaw bones. Doctor in Pain Centre told me, that TN is going into Occipital area and Suprascapular area.
There are pills: CLONAZEPAM 2 mg (we call them RIVOTRIL) they can help. They help me only in the evening together with Naproxen and Sanval (the last one is for better sleep). During the day I take Ephedrine pills but have got high pressure, so I have to find something else.
When I was in Spain they have Rivotril Drops and they did help me also during the day.

Hope, to help you with my experiences.

Bozena

Hi everyone

Thanks to all of you. It's rely helping me. Here is what new since last time.
The Tegretol is working a bit. I'm at 400 mg and I see a difference. I still have pain when i talk or eat but it's really better.

For the eye it didn't change much. I still have huge headache. I stop taking the Novo-Betahistine. I don't feel any different. Since I begin the Tegretol my dizziness is worse. I'm barely able to cook if someone else is in the kitchen. It's really weird!

Another good example is we received a lot of snow. I try to help my wife to shovel the snow but looking at the shovel and the movement of it, make me feel everything is spinning around me. The same is happening when many car are passing us at the intersection. Every time I want to jump out. Make me feel crazy!

I haven’t been driving since July 2009. I miss my 2006 Subaru STI and all my ATV ’s.

Thanks against everyone!
Steve

Hi there,

The dizziness might be worse from Tegretol because of the side effects. Give it a couple of weeks to get in your system hopefully your dizziness will stabilize.

We're glad that you're starting to feel a little bit better. It is quite unusual actually because it can take up to a couple of weeks to start working. But then again, everyone is different.

Keep us posted!! we're here for you!