I have had symphony for at least 5 years. I usually average 12 to 15 episodes a year.. but the past 6 months it seems I am seeing them more often. I just had a episode that lasted 24 hours. they start in ear the around the eye/forehead... but what really kills me is the shocks to the top of my head.. not center.. but to either side that is going off. I get them on both sides.. I have no idea what the triggers are. I just know when they start.. life is going to be hell for 24 hours at the minimum. the shocks start and can range from once a minute to every 2 to 3 and this goes on for hours. I wouldn't have gotten this diagnoses if it wasn't for my wife seeing me squint from a shock so I went ahead and told her. We went to the emergency room right then.. and I am lucky that I saw a doctor that took my symptoms and he seemed to know right off the bat..they still ran through to make sure I wasn't having a stroke. He is going to refer me to a personal friend that is a specialist. He will call my by friday. Here is the other side.. I am currently waiting for a 4th back surgery, have had L 4-5 fused.. and I now have L 5-S1 and L 3-4 fused. my neurosergeon has taken me off Loratab 10 and since I have has so many surgeries I didn't ask for anything from the emergency room. I doubt Loratab can even help the shocks. I am waiting on the referal and see where I go from there. I currently take several anti depressants and it's my understanding that they are one of the meds prescribed. I hope to join in the discussions and contribute. thank you
one more thing.. the hair on which ever side I can't even touch one hair without jumping.. and even then the shocks stop.. like right now it's been 24 hours.. the hair on my right side is still sensitive.. unreal.. some may ask why I ignored this,, my filipino wife asked me.. weve been married 5 years and I have never told her let alone another person. I just figured since I am one that has had 3 back surgeries.. right should reconstruction.. both hands carpal tunnel syndrome.. you get this look as if your digging for pain meds.. also.. but the time I would think about a doctors apt.. the episode would be over.
Thank you Kc Dancer KC.... I take anti depressants due to clinical depression and due long term pain from several back surgeries/shoulder surgeries.. the doctor at the emergency room said since you are taking a couple that already help and I am still having attacks. He said he would let his colleague prescribe and I am happy he said he would personally call him for referral. KC.. I am in Oklahoma.. thank you for taking the time and the info. I am going to look that book up today.
I watching Dr Neil Martin video on youtube and I just found I may also have Glossopharyngeal neuralgia.. my freaking ear and throat on the right side was killing me during this last episode I couldn't drink or even swallow food and this was for about 6 hours during the last attack. that why in the past I may have thought this is a ear infection and never seeked medical attention.. the emergency room doc said my ear and throat were normal and states there was no infections. So I need to tell this next Doc about both Trigeminal and Glossopharyngeal neuralgia.
Hi Mickey, Welcome. You are not alone and you will always have friends and family here. This is your private sanctuary where you vent, scream and let everyone know what you feel and what you are going through because somebody will have had a similar experience. Most of us, like you, have travelled long roads with the devastating effects of TN. It often helps to know that you are not alone.
Keep writing to your friends. You are among family and you will never be judged and here you don't have to care that people will have crazy thoughts about you.
Hi Linda and dsm.. here I was pretending this was just a bad ear infection all this time. I had tubes in my ears when I was a child for years so I assumed it was from that. Over the years I have tried to take possible serious heath issues and play them off as common every day problems so I can excuse my self from going to the doctor. but this last attack and then allowing my wife to notice the pain I was in. After coming home from the diagnoses.. I am thankful I was able to find this site. My wife is filipino and she was able to read the pdf file that was emailed in the welcome packet and even though she is concerned.. she's happy that were not here scratching our head wondering what is going on. I have read many of the post here and amazed at many of the stories and the long roads people have taken. I say it's been 5 years but I really can't pin point when these started. again.. thank you guys for the welcome and the kind words.
Thanks KC.. I still need to discuss the GN on my next appt..