3 days ago I started having sharp pains in my left ear. The pains lasted about 2-3 seconds, but happened frequently, like every 4-5 minutes. Thinking that I had an ear ache, I went to my doctor and she told me immediately that I had TN, which could be treated with an anti-seizure medication. I was in shock, especially after I started to read up on this terrible illness and what people go through. I also read here where many people don’t even know what they have even after several months of suffering.
I am not totally convinced I have TN though. The first day, the pains settled down, and disappeared toward evening. I was able to sleep all night without pain. The second day, they were frequent in the morning for about an hour, but disappeared. A few twinges woke me up that night. The third day (today) I have a dull twinge in my left temple occasionally.
Is this how it happened with you? Or was there constant pain all the time? I’m hoping it could be something else more curable. Maybe I’m in denial.
I have not started on the Tegretol. I am not the type of person who likes to take pills. I can’t even finish a course of antibiotics. I have a job where I need to be alert and aware, and can’t be a zombie.
If you have never had symptoms like this before it does seem odd to be diagnosed so quickly. Normally to be diagnosed you do x Rays, CT scans, and MRI to eliminate any other reason. Yes the anti seizure medicine is also a sign but if you haven’t taken any then you don’t know if it has had any effect on your pain. When it comes to the pain everyone has different levels and areas the pain is. Don’t take or do anything that you feel uncomfortable about. If the pain comes back I would ask for test so you can at least be sure it isn’t anything else. Good luck and I hope good health in your future.
The Drs usually give you Tegretol as a way of diagnosing TN as if the pain goes when taking it then it could well be the problem. If the pain worsens or becomes more regular I think you could try them.
Ear pain could be GPN( glossopharyngeal neuralgia) or, more likely, geniculate neuralgia rather than TN. Treated the same way and, if this continues and there are no abnormalities with your ears, a MVD works on these neuralgias also. It is the same mechanism at work, i.e., nerve compressions.
It only took me 21 years to get diagnosed with TN2 and told more than 20 different kind of doctors that my trigeminal nerve was involved. If you have TN and are lucky enough to have a knowledgeable doctor recognize it so quickly, you are a very lucky person.
With TN2, when it was at its worst and I was bedridden for about 4 months, it was the only time it felt like someone was constantly jabbing an ice pick in my left ear which is usually my worst side. If I had to live with that permanently, I wouldn’t be around long. But I also learned a great deal about what did and didn’t cause pain during those 4 months of extreme misery.
Hi. I had the exact same symptoms and went to the doctor thinking I had an ear infection as well. It turned out to be GN not TN. GN is geniculate neuralgia. I did have an MRI of the brain to rule out a tumor and MS and also ruled out dental issues as well. I am currently on 5000mg of spirulina daily, which is an herb. 98% of my symptoms are gone! No other drugs. I had been on a higher dose of spirulina, but over time was able to lower it. How did I end up learning about the magic of spirulina when it comes to dealing with TN and GN? Well, my horse has equine headshaking syndrome (EHS) which is essentially TN, but in a horse. The world’s foremost veterinary researcher re EHS at UC Davis, Dr. John Madigan, has a great website devoted to the subject of equine headshaking and potential options to try… though there is no cure. Spirulina is mentioned on his site. There is a TON of crossover between equine and human medicine. Vets often speak at human medical conferences and vice-versa. If you decide to try the spirulina… and I really hope you do!!.. get the horse wafers sold at Springtime Inc herbs. The wafers are big but easily break into 2-3 pieces so you can swallow them. Springtime has strict mfg controls. Do not get any old brand at your health food store. Having GN or TN is pretty rare. EHS is also super rare. Somehow my horse and I were meant to be together so I could save him from being put to sleep, and he could save me from a life of pain, taking drugs or undergoing serious surgery. I wish you the best of luck. I have helped MANY horse owners and people by sharing the spirulina story. It is believed (though not known for sure) that the long chain omega 3s (DHA) in spirulina, which are a known anti-inflammatory, are the key to why it works. You can also try adding melatonin or magnesium if the spirulina alone does not work. Check out John Madigan’s website.
That is somewhat encouraging as GN seems more manageable than TN. I
haven’t had any of the ice-pick sharp pains in my left ear since the second
day (last Friday) I did NOT start taking the Tegretol. I do occasionally
have a quick throb in my left ear, and my left temple hurts sometimes, as
well as the back of my head. But maybe because I’m being hypersensitive to
all this since I did all that reading about TN. I work for an
ophthalmologist and know that optic neuritis is associated with MS, and I
haven’t had any bouts of that. Cross my fingers its not that. I am trying
to self diagnose myself, which is bad. I’ve read that TN affects 4 in
100,000 people, but found out recently that I know someone well who lives 6
miles away from me that has TN. At least I have someone to talk to about
this. I have an appointment with a neurologist in a month, and will ask
many many questions because I’ve learned so much reading other people’s
posts here. Thankful for each an every one of you.
Hi, First I am so sorry that you are joining the TN group. At first hearing your diagnosis it is such a shock. You will at times be willing to do anything to get rid of it but get a very good and people oriented neurologist. They are the partner you need.
The pain is like a shock. It comes for 30 seconds but then it can keep coming for 4 hours of 30 seconds. It can come across your eye brow, your cheek, your nostril, your teeth and in your ear. Your face muscles get tired of the flair up and get sore too.
But you can find ways to live with it. I have it barely in the summer and horribly in winter. I keep reminding myself summer is coming. Many people here will discuss different meds, procedures, Etc. They may work and they may not. Don’t try stimulation because that is what is wrong with us. Don’t let people or hair or things brush your skin, it will start trouble. Touch your face firmly not barely when you need too. Read National Institutes of Health TN information or the UKs version for news on potential new drugs. You do have to take drugs. It’s a crummy part of this and they can make you forgetful, fatter or sleepy but after many months they may not.
I send you a giant hug and thought: we are here when you need us. Oh, and skip reading about suicide discussions. It isn’t good for us. They are good options for managing and we don’t need fear or anger. They do not help. You will learn to love and tell yourself this is going to stop in a few seconds, hours, days, months because it does. Enjoy those moments like mad!!
I had my neurology appointment today and he said he does not think I have TN. Since the pain was just in my ear, and there was only one episode, he thinks I probably have otaligia. It’s my understanding that there will be ear pain and I will probably need to take something, such as Lyrica. The MRI is scheduled for sometime in the near future. Has anyone here been diagnosed with otalgia?
I had my MRI last week (with and without contrast) and they were negative. I’ve never had any of the sharp stabbing pains I did those two days back in August. I’m not on any medications. It’s always in the back of my mind though. Hoping the pains never ever happen again, but at least I’m more educated on what to do. Just thought I’d update.