Hello everyone. I have ATN on the left side and would like to know if anyone else has a very sensative sensation in their ear. I have pain and pressure in my left ear most of the time but have noticed that I can hardly use that ear when talking on the phone. Initially I thought it was due to the areas the phone was touching but I have notice even when holding the phone away from my ear a little bit it still seems to really flare up the nerve pain in the left side of my face. I have also notice it is even worse when using my cell phone. Does anyone else have this strange symptoms???
Other than that I have the "typical" symptoms of ATN. I have a contant pain, pressure, aching & sensative sensation over most of the left side of my face, from my lower jaw to just above my eyebrow and from my nose over to my temple and ear. On most days I am at a moderate pain level but have some severely painful days at times and even have some mildly painful days on occasion - I pray for those days!!! On many days I find it even difficult to wear my glasses, thank goodness I can wear contacts but do have to take them out at night - due to dry eyes, which is actually another symptom that started along with the ATN - dry eyes and dry mouth. Seems at times my saliva glands don't seem to work properly. The lack of saliva issue was very severe a couple months back but seems a little better now. I think maybe the dry eye vitamins I am taking may be helping with the dry mouth as well. Does anyone else have either of these symptoms?
Mine is also on the left, and I also can't use the phone or computer headphone or earbuds. I also seem to have a non-functioning saliva gland on that side. My ear is very tender and it also feels like an ice pick being jabbed very deep over and over. I'm just thankful I don't have the burning that so many have. I feel so bad for those who have burning. I can't lay on my left side of my face either. So strange that even to pull my earlobe a bit to put in an earring, hurts. I think we are unbelievably strong, but then there is no other choice, is there?
Thanks for your reply Sheila. I had not come across many people who have the ear issues although I do not have the deep jabbing pain you speak of, thank goodness, that sounds horrible. I do have the constant burning - mainly in my cheek - feels like it is on fire. Like you, I also cannot lay on the left side of my face. You are so right about being strong. It is sometimes so difficult to stay strong especially on those REALLY bad day but like you said we really have no choice. I am so glad I found this group it really does help to have people that understand and have similar symptoms.
I'm another "icepick-to-the-ear" person. I also get the same sensation in my eye. All left-sided. I'm also itchy & burn-y. Ugh. I can lay on that side...but the wind blowing on it is EXTREME pain.
I have a lot of pain, pressure, tenderness and sensativity around my eye but not the icepick pain, thank goodness. I also have what I call a visual disturbance, not blurry vision but dim vision in the left eye. Cold wind hitting my face bothers me. I learned the hard way not to put ice packs on my face either, I had read that for some people it numbs the pain but it really flares mine up. I can use a warm moist heat though, that seems to at least relax the muscles a bit. I have a moist heat pack that I lay over the left side of my face just before going to bed....seems to help me go to sleep...LOL.
Dawn
Pambo117 said:
I'm another "icepick-to-the-ear" person. I also get the same sensation in my eye. All left-sided. I'm also itchy & burn-y. Ugh. I can lay on that side...but the wind blowing on it is EXTREME pain.
Dawn, Sheila, and others: "ice pick" pain in the ear is the primary symptom by which a professional neurologist might diagnose Geniculate Neuralgia. The causes and treatments of this type of pain are much the same as for classic trigeminal neuralgia, although the affected nerve is slightly different. As a reasonable precaution it wouldn't be a bad idea to be checked out by an Ear Nose and Throat specialist for inner-ear infection, though that doesn't sound like what's going on for Dawn. Trigger zones for facial pain can exist in the ear, among many other places.
Can I just add to what Red's red, and also mention glossopharyngeal neuralgia as a contender for the ice pick to the ear stuff, it's glosso I have, which for many people is predominantly in the tonsil/throat/ but the upper branch of the nerve can affect the inner ear causing attacks there. The problem when it comes to this type of pain in the ear, is that it could be TN, GN, or GPN and it's a matter of determinining which it is and its not always going to be straightforward in finding out, just something else to add to the mix.
Grace is correct of course in identifying Glossopharyngeal Neuralgia as a candidate. From what I've read and heard from my own spouse who first presented with this disorder, most often when GN is felt in or near the ear, the pain is more of a burning and aching, not a sharp ice-pick stab. But the overlaps in symptoms can be substantial.
Just thought it was worth mentioning, it's amazing the overlaps that can occur between the conditions, and the things that can muddy diagnosis. For me the with the GPN problem is the lightening bolts, and although they have hit my tonsils in the past they are generally confined to zaps deep within each of my ears.
I'm unsure of the burning/aching that goes along with GN, but certainly there are a few GPN sufferers that experience atypical symptoms in the same manner as as they are experinced with ATN.
In GPN "generally" the zaps dont come so often as they do with TN, and for some they could have one attack and it never return, others among us aren't so lucky, I'm nearly at 4 years and have both sides active on a daily basis and haven't had a remission yet, but I seem to be the exception rather than the rule.
What is also MAYBE worth bearing in mind is that the GPN can be caused by elongated bones/calcified ligaments in the throat know as eagle syndrome, if the bones are too long they CAN cause compressions rather than the normal vascular kind, HOWEVER, the research shows that although taking these bones out can help if you have the neuralgia in the region of your throat, if you get the pain in your ears and surgical intervention is eventually required, an MVD is likely to be the only option for effective pain relief.
I just thought I would mention it, because I had so much trouble with my own diagnosis. If anyone's wanting to chat about eagles or GPN any further though, Ben has set up livingwitheagle.org and also livingwithgpn.org. as designated communites so you would always be welcome to drop in. :)
I also have the ear problem when on the phone, and it's worse with my cell phone. I have the shooting pain and pressure in my ear for long periods of time but it calms down at times too. If there are loud/high-pitched noises it hurts my ear too. My eyes are dry but I didn't contribute it to ATN. Never noticed the dry mouth. I hope you have a pain-free/pressure-free night:)
Well, although I am so sorry others have the ear problem when on the phone, it is kind of good to know I am not the only one. I was beginning to wonder if I had another nerve problem involved in addition to the trigeminal. I have a huge list of symptoms that just seem so crazy and confusing. At some point I am going to try to write out my entire story since this all began in 12/09. I am so glad I found this group it helps make since out of most of the strange symptoms.
Hello! I also have the stabbing ear pain, but in both ears. My TN started on my right side, but before that I started having the ear pain. Sometimes it’s a “whoosh-whoosh” sound and sometimes it’s the ice pick stabbing pain and sometimes I get the electrical shock pain. That went on for a little over 6 months before I started presenting with TN. Then the TN pain wasn’t “atypical”, but I was experiencing “episodes” of 9/10 level pain in which all I could was scream. These episodes would last up to four hours and NOTHING helped. The pain was in all three branches of the trigeminal nerve, the ganglion, deep inside my ear, and behind my ear. A few months after that I started getting the tongue and roof of mouth pain, as well as pain in the front area of my throat and my tonsils. It wasn’t until I came to this site that I realized it could be GPN pain, as well. I also have occipital neuralgia (and fibromyalgia). In my opinion, that is WAY too many algias!
Anyway - now, a year after I first started presenting with TN on my right side, I have it on both sides - with ATN on my right side. I have the stabbing and electric deep ear pain on both sides, as well. In addition, my ears always hurt! I have trouble laying down so I use a very soft, squishy pillow. I also have trouble using phones (too loud) and anything else that seems too loud to me - including the microwave (because it beeps). Sometimes the sensitivity to noise isn’t so bad, but too many times any noise at all will bring me to tears because of the pain.
I also have the dry mouth and dry eyes, but I figured that was from the medication! If not the meds, what could cause that?
Red, I take so many medications! Vicodin, Zanaflex, Neurontin, Celexa, Mobic, Fioricet, Tegretol, and Xanax are the ones I can remember off the top of my head. I know the Tegretol causes dry mouth and dry eyes, but I had those symptoms before I started taking it two months ago.
Jessibee, with this combination of many meds, I would strongly recommend that you do a medications interactions review with your supervising physician, ASAP. It is beastly hard to manage side effects when there are so many active ingredients in your body system. Your physician may want to consider scaling back some of your meds in favor of others.
I go over my medications every time I see my doctor, which is about once every 6 weeks. The main interactions with the meds is increased drowsiness and sedation. The problem with scaling them back is that they help with each of my different medical issues. As I mentioned before, ATN isn't my only chronic pain issue. Along with all the algias (that's the term I use to lump all my diagnosed pain issues), I have spinal problems and chronic back pain for the past 17 years.
I do worry about the effects of the meds I take and make sure my doctor orders liver and kidney function tests about twice a year, and I should be getting CBC test (due to the effects of the tegretol) in about a month or so. The docs want to do that one every three months. If you can think of any other test I need to push for, please let me know so I can add it to my list.
When you have the CBC done, it would also be advisable to have blood levels for Tegretol or other anti-convulsant meds checked. In the US, your blood levels would also be verified as consistent with your prescription dose levels, for any opioids -- but that is a policy requirement of our US controlled substance hyper-phobia, not a requirement for health and well being of the patient.
Hi Dawn,
I also have ATN on the left side, and yes, I also suffer from those very same ear problems. My left ear almost always feels achy, have the same trouble speaking on the phone, and in addition to this I also have trouble laying on the affected side, it almost always brings on a flare. Does anyone else here have trouble laying on their affected sides??
I have alot of scar tissue on the right side. I am on the supra-orbital nerve which gives cheek, nose, lip pain. I have pain on the right side, right ear and neck, which leads to extremities. Someimes I have a dry palate, but again there is scar tissue in this area. I eliminated all drying meds.