New to This TN and it is AWFUL!

General General TN & GPN (Old Site)
1

I've just been recently diagnosed with ATN and this is awful. I didn't even know such thing existed. I have pain around my eye, on my cheek, and onto my jaw. I have a red face now too. I get the pain mostly on the right side, but does happen on the left side too. I get what I call mini-migraines and also full-fledged migraines, just from the TN. But, the hugest problem I have is the dizziness. I can't drive to work (35 miles) and can hardly get out of bed due the the dizzies. I've missed a lot of work (but work for a great companu) and am worried about not being able to stay at work.

I went to an ENT last November with cheeks pressure and pain. He scheduled all kinds of stuff: Sinus CT, nasal endoscope, Allergy testing, ear/balance testing, put me on antibiotic and steroids.

My neurologist (just diagnosed last month) put me on a couple of anti-migraine meds that just aren't doing much of anything. So, I will visit with her again to see what's next for pain management.

Any suggestions.

Please tell me I am not alone. This is very painful, emotionally and physically. All I can do is sleep (without pain).

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Also another thing... my congnition is impaired sometimes too. NOT due to meds, but the TN itself. My ability to type, speak, spell, recall and many other things are an issue! That true for you?

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When my pain is out of control then yes in answer to the question about speaking spelling etc.

I find regular taking of my prescribed meds, Neurontin aka Gabapentin is vital for pain control. Work can be hairy at times. I have great staff who help me out. My boss is good about my TN also, I know I am lucky.

I hope all the members and their discussions etc will give you a feeling of belonging with like minded people, I know I was so isolated before I joined here. I have come home.

4

Hi Sara! Welcome to the site. I'm new to this discussion group as well, and I've got to say, your story sounds so much like mine. I went to my dr because of pressure, vision problems in my left eye, and dizziness. They treated me for sinusitis, about 10 rounds of antibiotics. Went to an ENT, had x-rays, had the sinus CT scan, nasal endoscope, allergy testing, hearing/eardrum testing. Then they treated me for migraines with a couple of those meds - I told him I didn't know if the med was helping, or if it just made me no longer care. I stumbled out of work, I was so dizzy I didn't dare drive, and wobbled down the sidewalk nearly in tears because I didn't know what was going on. I spent about 2 months in bed - hit the wall when I got up to go to the bathroom. They put me on a round of cortizone to see if it would help what feels like swelling on the left side of my face/jaw. Another weird thing - I have a yuck discharge into my mouth, but it seems like it might just be my salivary gland along my upper jaw is whacked because of the nerve, and is always producing. Now I'm on Tegretol, but I can only handle 400 mg at this point, which I know is low, but it still makes me sleep about 12 hours. I'm off work on LTD because I can't function for an entire day. The Tegretol does help control the dizziness, though, and takes care of most of the pain along my jaw and cheek. It doesn't seem to keep swelling down, though. Monday I've got an appointment with a neurologist, so will see from there.

You are not alone! Hang in there!

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Yeah, My neurologist had it diagnosed in about 5 minutes. I'm going to see her again to get new meds (not just for migraines).

Lorraine said:

Hi Sara! Welcome to the site. I'm new to this discussion group as well, and I've got to say, your story sounds so much like mine. I went to my dr because of pressure, vision problems in my left eye, and dizziness. They treated me for sinusitis, about 10 rounds of antibiotics. Went to an ENT, had x-rays, had the sinus CT scan, nasal endoscope, allergy testing, hearing/eardrum testing. Then they treated me for migraines with a couple of those meds - I told him I didn't know if the med was helping, or if it just made me no longer care. I stumbled out of work, I was so dizzy I didn't dare drive, and wobbled down the sidewalk nearly in tears because I didn't know what was going on. I spent about 2 months in bed - hit the wall when I got up to go to the bathroom. They put me on a round of cortizone to see if it would help what feels like swelling on the left side of my face/jaw. Another weird thing - I have a yuck discharge into my mouth, but it seems like it might just be my salivary gland along my upper jaw is whacked because of the nerve, and is always producing. Now I'm on Tegretol, but I can only handle 400 mg at this point, which I know is low, but it still makes me sleep about 12 hours. I'm off work on LTD because I can't function for an entire day. The Tegretol does help control the dizziness, though, and takes care of most of the pain along my jaw and cheek. It doesn't seem to keep swelling down, though. Monday I've got an appointment with a neurologist, so will see from there.

You are not alone! Hang in there!

6

Hey Sara!

I am sorry to hear you are having such a difficult time getting this under control...I understand; my MD had me diagnosed within 10 minutes of discussing my symptoms...I went to see a neuro after taking Tegretol 400mg for 5 months and NO relief...he was so surprised I was taking such a low dose; he immediately put me on Trileptol 300mg twice daily and I have had better relief with this dosage.

Do you have pain in your ear also? This was where mine started (thought it was a terrible ear ache that would not go away) and proceeded to move around to my lower left jaw (3rd branch) and then along to my cheek / nose area (2nd branch). This monster has no favorite places of hurting us; it moves around at will and keeps us guessing!

Try using heat to sooth your aching area, stress makes mine hurt worse too - please know you are so not alone! I have had this 'thing' for about 6 months and it truly feels like a lifetime already! This website has given me a place to 'voice' my frustrations in a safe place and gather wonderful info from people I can trust (since they live it too!) We are here for each other... :)

Cris

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You are not alone and I understand what you mean when you say this is painful emotionally and physically. It is truly wearing me down.

I am newly diagnosed with ATN and your story sounds like mine. I did a few rounds of anitbiotis for sinus infections that didn't exist and had a CT scan which showed inflamed sinuses but ENT says that's not what's causing my pain. I also went to the eye dr. thinking it had to be my eyes because it would feel like somebody was stabbing me in the eye at times and I had a pulling feeling. The eye dr. looked at me like I was crazy and said she never heard that before. I also recently began experiencing what I think are migraines but have never had them in all my 44 years so this is new or me.

My neurologist and the pharmacist where I go both said that Tegretol is the gold standard treatment for this and that's where one starts. I just started taking Tegretol yesterday and am not liking it but am desperate for some relief. Many on here have found relief with this so maybe you could ask your dr. if you could try it.

The only thing I have found is that when I put moist heat on my face that it feels a bit better. Sleep isn't even helping me at the moment because for some reason I now wake up multiple times a night and the pain is always there. Anyways, I'm not much help as I am struggling too but know that you're not alone and there is always the hope of remission.

8

your not alone...Am new to this also, I too saw an ENT and had pretty much the same tests done. Am off work at the moment and like you am worriied about being able to go back. I usually have a high pain thresh hold but this is turning my life upside down and all I want to do is sleep!! Am on tegretol and take strong pain killers, but not much help. I use a heated lavender bag a lot, takes the edge off for a bit.

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Wow! It does sounds like we newbies have way too similar stories (as I am sure it is true with many veterans of this disorder). Yes, it truly does help to know that there are others out there in the same position that I am in. Sometimes just venting helps.

I have used a small heating pad (my Mom makes the covers for them too) that really does help... while it's on! Then, when I take it off, the pain comes back.

I will discuss my meds with my neurologist as I am currently taking Relpax (a migraine med) and then I wake with a migraine. Uh, duh. Isn't it supposed to get rid of headaches, not give me one?

I, too, have a pretty high pain threshold. Also, when it is constant, it "grows" on me... don't like it, but it's there.

Yes, my ears hurt too. But, I've had ear issues over the last decade with my chronic sinusitis (that's why I thought this might be sinus related too). I had tubes in my ears twice (once in 2004 and the other in 2007) and so I have damage to my eardrums anyway.

My paid started in my cheeks and then it went up to my eye sockets and down to my teeth. I can hardly touch my face at all anymore and sometimes can only eat stuff like mashed taters.

I have also developed a few regular "twitches." One around my eye (three different spots) and the other above my lip on the right.

You can almost always tell by looking at the color of my face how much pain I'm in. My nose looks like Rudolph with Ragedy Ann cheeks.

On the rare times that I feel close to normal... I sit going, "Ok, when's it gonna hit." But, the dizzies are the kicker. Just minding my own business (sitting, standing, or lying down), just KaZaam! I'm dizzy. I'm almost amused by the times that I'm just waking up and I get dizzy. Really?? Dizzy in bed, not moving or anything. LOL

One thing I've learned are my triggers. My hair is one. So, I'm trying to be very diligent about it. I have long, thick hair (most of the time, this is a good thing) and cannot wear it in a pony tail anymore. I try to cut down on my singing to the radio... cuz it hurts. But, I talk on the phone at my job, so I can't stop talking. The cold air, another trigger. Living in Nebraska, I can't avoid it (even with warm winters as this one has been). I just try to make my trips outside quick and wear a scarf if needed.

I gotta say... just know what this is, is a huge relief. Then, to know there is no "fix"... ARGH!

Another frustrating thing... I lost 30 pounds and then gained it back. So, I want to lose it again (before I am 40 - next February). I walk it off. However, since this... no energy, too much pain, etc. Any suggestions on exercising with not too much stress to my face??

10

I have tried swimming and it seems ok, as long as I keep my face out of the water and take my time. I am not a swimmer more of a dance and Zumba girl, but cant do those any more, the noise and the jumping around trigger all sorts, plus dont have the energy and am often to dizzy. I also do Tai Chi to try and 'clense the body' and to give me some peace of mind

The meds have stopped the majority off my twitching, like you around the eye and on the lip, is your twitching painful?

I am learning to avoid my triggers, but some you cant avoid all the time as they are part of life! I dont eat much any more and if I do it is soft Like yoghurts and bananas. Social life gone out the window too!!

Sara Greiner said:

Wow! It does sounds like we newbies have way too similar stories (as I am sure it is true with many veterans of this disorder). Yes, it truly does help to know that there are others out there in the same position that I am in. Sometimes just venting helps.

I have used a small heating pad (my Mom makes the covers for them too) that really does help... while it's on! Then, when I take it off, the pain comes back.

I will discuss my meds with my neurologist as I am currently taking Relpax (a migraine med) and then I wake with a migraine. Uh, duh. Isn't it supposed to get rid of headaches, not give me one?

I, too, have a pretty high pain threshold. Also, when it is constant, it "grows" on me... don't like it, but it's there.

Yes, my ears hurt too. But, I've had ear issues over the last decade with my chronic sinusitis (that's why I thought this might be sinus related too). I had tubes in my ears twice (once in 2004 and the other in 2007) and so I have damage to my eardrums anyway.

My paid started in my cheeks and then it went up to my eye sockets and down to my teeth. I can hardly touch my face at all anymore and sometimes can only eat stuff like mashed taters.

I have also developed a few regular "twitches." One around my eye (three different spots) and the other above my lip on the right.

You can almost always tell by looking at the color of my face how much pain I'm in. My nose looks like Rudolph with Ragedy Ann cheeks.

On the rare times that I feel close to normal... I sit going, "Ok, when's it gonna hit." But, the dizzies are the kicker. Just minding my own business (sitting, standing, or lying down), just KaZaam! I'm dizzy. I'm almost amused by the times that I'm just waking up and I get dizzy. Really?? Dizzy in bed, not moving or anything. LOL

One thing I've learned are my triggers. My hair is one. So, I'm trying to be very diligent about it. I have long, thick hair (most of the time, this is a good thing) and cannot wear it in a pony tail anymore. I try to cut down on my singing to the radio... cuz it hurts. But, I talk on the phone at my job, so I can't stop talking. The cold air, another trigger. Living in Nebraska, I can't avoid it (even with warm winters as this one has been). I just try to make my trips outside quick and wear a scarf if needed.

I gotta say... just know what this is, is a huge relief. Then, to know there is no "fix"... ARGH!

Another frustrating thing... I lost 30 pounds and then gained it back. So, I want to lose it again (before I am 40 - next February). I walk it off. However, since this... no energy, too much pain, etc. Any suggestions on exercising with not too much stress to my face??