Today popped a new symptom or new pain, or something unrelated, I am not sure. I had a sharp, piercing terrible pain that felt like a dagger that kept pushing through, in the back of my eye into my sinus area. Kind of like a sharp, terrible, ice cream headache freeze. This not the typical pain that I have had up to this point and am not sure if this is part of the TN madness, or if it is something else. I am trying to journal my pain so I can see if there is a pattern, if there are triggers, what seems to work, what doesn't. But I am also trying to weed out what is TN what is not as well.
Could you please share with me if this fits your own experiences. And more, can you share with me your own pain and what it feels like? This is such a new world to me.
While I do not (yet!) have eye pain I did put it in the search box and there are many discussions about it. There is also a group for eye pain where you could pose the question and see what others say.
My pain consists of feeling like I have been rewired to the mains. It presents in it's favourite tooth but sometimes feels sorry for a few others and visits them too! It brings me to my knees very quickly and I am either very mardy or the pain level is 9/10. It last for up to 2 minutes and I cannot do anything while I am having it. It is triggered by any mouth movement, even breathing. It has travelled up to just below the eye but that is more of a radiating pain from the intense spasm in my tooth area.
I am pretty sure I had some of that when I was on Tegretol, then they put me on Topomax too. I feel sure the Teg caused it. It also caused me to have more throat pain and jaw pain. Now I don't have it tho, and I take Effexor only. It was occasional when I did tho.
I have bilateral atypical TN. It favors (or curses) the left side mostly. I have had pain in the left sinus that feels like a sinus infection, occasionally both sinuses will hurt. I have had pain in my left ear. Also, in my cheekbone like I've been punched. Pain in one or more teeth that feels like sensitivity or a cavity. My jaw aches every night on both sides. sometimes, I get a tingling sensation on my lip or at the tip of my nose. I do not get the lightning strikes of pain or the spasms that plague so many, but my TN can set off a migraine headache. I can have one of the above symptoms at a time or all of the above together. Gabapentin keeps the worst of it away.
Sometimes the left side of my face appears and feels slightly swollen. That makes no sense to me, but I've had a doctor witness it, so I know it isn't my imagination. And, I think this is worth mentioning, sometimes I get a quick, sharp stabbing pain in my eyeball. It feels like someone stabbed my eye with a needle. It causes my hand to fly up to my eye. It's over in a flash, but I hate that feeling. I cannot confirm that this is TN, but it seems awfully coincidental to me and it has the feel and quality of TN pain.
I hope this description sheds some light on some of the atypical symptoms for you. BTW, you can have both typical and atypical pain. : ( I hope you feel much better soon.
That "ice cream headache" symptom is sometimes reported by facial pain patients who also have cluster headache. I think it might be wise for you to look up symptoms of cluster headache and see if there's a match. This disorder is less common in women than in men. Alternately, this could also be an unusually severe symptom of TN. Stabbing pain behind the eye is fairly common in TN patients.
Wow. I had a strange eye pain happen. This was before my journey into hell with TN. What happened was I started taking a new medication, Zyprexa. I assumed that this was why I experienced the eye pain. I had two separate incidents. I just wanted to take out my eyes it hurt so bad. I have had this eye pain only twice. If I recall correctly I think my head hurt as well. This was not the dry eye pain.
I started reading the insert that came with the medication and one of the things that needs to be taken in to account is glaucoma. I don't have glaucoma but my mother does and and I am supposed to be checked for it every year. The particular type they seem to be concerned with it the narrow angle kind but mother does not know which one she has.
I called the maker of the drug but all they wanted was information about the attacks. I spoke to my psyc. and she said I can take the drug as needed. I was so freaked out about this I went to to the eye doctor who could find nothing wrong.
Since I have not had another eye attack I have chalked it up to the unknown arena. I will be going to the Mayo Clinic and bring this up however.
All interesting replies. Jackie: My pain is most like yours, at least the beginning of it. I have a "favorite" tooth too. I get electrical shocks or zaps through it, they last only seconds, but this is how I know the second part of the pain is coming. If I touch that tooth on accident with my tongue, then the zap lasts a lot longer. After the onset of that pain, I have about 10, maybe 20 minutes and then it feels like someone is continuely beating me with a baseball bat on the side of my jaw, through the sinus area and through the upper and lower gums. The pain comes in waves. The worst of the pain is off the charts... I use to measure my pain being a 10 which would be childbirth, the most painful thing on earth to me at that time not knowing about TN -- Uh, whatever, that was innocent and naive.
That is a "typical" attack for me. I was in the hospital last night when the eye pain started. My dad had knee replacement surgery. It felt kind of like migraine's I have had in the past, but just enough "off".
I am being weaned of Tegretol right now because I could not handle all the side effects. I feel much better on the gabapentin. But I am not near at the amount I need to be pain free.
Because I am so new at this stuff, I don't know what is "normal" and what is not -- though seems there is not really a normal but just strains of patterns.
Lisa, your characterization of TN as a strain of patterns is quite apt. Individual patients have individual patterns, triggers, drug sensitivities and responses to surgery. This is seen in medicine generally, but I think especially so in neuropathic disorders and treatments. This can be another motivation for learning as much as we can about the range of conditions and issues that may affect us as patients and family members.
Oh and Jackie, thanks for the search box tip... It took me forever to find it, but I did. This place is unlike another support forum I am on. Still getting use to where everything is. When you said there was a search feature, I was like "where?" LOL. My brain does not move as quickly as it once did right now. But alas, I found it.
Red, I am approaching this new condition like I would a new legal problem and the first thing we do is look for patterns. While it is so different person to person, we can look into ourselves for patterns of pain. Helps me to identify triggers, reactions, pains, so on.... I keep looking for that magical thing that will head off an episode. For me, it seems that wind brings attacks and pain.... which is unfortunate because this time of year we have wind. So I am trying to figure out lots of ways to cover the face without touching my face.... scarves are and a jacket with a stiff collar in combination are becoming my friend. Keeping this journal is the BEST thing I have done and I so recommend it for any new patient or any at all. Plus, it is a written record I can take to my neurologist and doctor so I don't forget things, which I am apt to do right now due to either pain or the medication.
Parka jackets often help too, if they have a hood.
FYI, I'm talking with a couple of principal investigators who are beginning development of wireless on-line facial pain diary applications. I completely agree that such a journal can be a very constructive and helpful step in recognizing triggers and aids to shortening or avoiding pain attacks.