Actually I am not “new” to ATN itself – only new to the discovery that this is what I have. I have had a low level, crushing pressure sensation in my forehead and scalp since 2009. It is continuous – literally has not stopped for eight years and counting. It never gets better, but is often made worse by ANY facial movement (chewing, talking, smiling, eye movement, etc) or touch to my forehead, and even fluctuates throughout the day for no apparent reason. Pain killers do not have any impact on it. When it first appeared in 2009 I had sudden facial twitching/convulsions along with it, but those stopped after a few weeks and only the continuous crushing sensation remained. So, I suppose maybe at one point I had both TN and ATN, but now I believe I only have ATN.
Despite how terrible it is, I must say I am ecstatic to discover this is an actual condition with a real diagnosis. I have felt alone in this for years and no doctor has ever been able to figure out what I have. I still have not received an official diagnosis (I have an appointment with a Neuro next week), but I am incredibly certain that this is what I have. I found the condition by just googling my symptoms the other day, something I have done often over the years, but this is the first time my searches have ever led me to TN and ATN, the first time I have come across something that exactly matches what I have been living with for years. I know I shouldn’t self-diagnose, but it is a near perfect match.
I find it crazy that I have never come across the condition before in my eight years of searching for answers. I find it even more crazy, and quite frankly unacceptable, that no doctor has ever even CONSIDERED to tell me that this is what I COULD have. I have seen countless neurologists over the years. I even traveled across the country to the Mayo Clinic and spent a week working with the neurology department there. All of the neurologists have either been baffled and offered no answer, or misdiagnosed me with musculoskeletal issues. Even after presenting them with my whole story, including the facial twitching in the beginning which seems to be the hallmark of TN. I mean…WTF? Again, I am very excited to feel closer to some answers, but also a little angry that it took me this long. I wonder if this could have been resolved sooner had I gotten an early diagnoses…
Anyway, I should instead focus on the future. The first step is meeting with a new neurologist and hopefully getting a confirmed diagnoses. Then I am sure I will have tons of questions for all of you as I explore my options. I actually have a few for starters:
Is there a go-to source for legit information on ATN? Any books you’d recommend? I have a lot of research to do and am not sure where to start.
I am very interested in trying natural treatment methods FIRST (isn’t that the way it should be?) Has anyone with ATN had success in managing their pain by natural treatments? I do get acupuncture, but it doesn’t really do much for me. I’d like to avoid pharma drugs and surgery, though would consider them after exhausting all of the natural options
If I do go the route of drugs or surgery, what is the most successful for ATN? I see a lot of “TN” talk, but through the research I’ve done it is difficult to pinpoint the best options for ATN…so…are there ANY!?
I’ve seen people discuss surgeries that “kill” the nerve. Does this really help people feel better? Is the face numbness not just as uncomfortable? Can you still move your facial muscles normally without issue? Aren’t nerved needed to innervate muscles?
The pain I have is only in my forehead and scalp…but it gets worse when I move any part of my face. So, I have no pain or discomfort in my jaw/nose/eyes, but when those things move I get pain in the forehead/scalp. Does that make sense for ATN?
I’ve seen some people say that exercise helps them feel better. This is interesting to me because, though I love to work out, it actually makes my head crushing sensation much worse. Am I the only one?
One last oddity I have, also related to exercise: whenever I work out, or even if I have an intense moment of anxiety, the worsening crushing sensation is accompanied by a “pounding” in my head and protruding veins in both my temples and forehead. Before this happened the veins in my head have never protruded this much. It is clear to me that something is going on with the blood flow into my head. Is this related to ATN? Is it a coincidence? Basically, whenever the crushing sensation is at its worst for a long period of time (if I went for a run for example), it is always joined by protruding veins and an intense “pounding” in my head.
That’s all I have for now…I understand that every case is probably different and that the first step is to meet with the doctor - and that I still have tons of research to do. But I’m very excited to find this community and just wanted to get those questions out.
Thanks to all – and though I am sorry to see that others are struggling with face pain, it is enormously comforting to meet you,