New to ATN

Hi all,

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,
Mike

Hi Mike
Glad you have found us and people here have some amazing info.
The go to book is called Striking Back .
I am new to this-just thought I would throw that bit out.
Some people have some success with B12 shots.
Start reading some of the moderators info and go to you next appointment informed and asking questions and writing the answers down-or recording if allowed.
I don’t have all the symptoms you were explaining-I am just trying to figure out me-but i thought I would welcome you in and hope to hear about the appointment.

Thanks for your response and your welcome, Ellen. I will definitely check out that book, and also look into B12. It seems that I have a lot to learn and think about.

HI Mike,
Wlelcome to the site, hope you can find some solace and maybe some help here. Many of us struggled for a while to get answers for what we were experiencing. I would echo that Striking Back (I believe the author is Weigel, just threw away my notes!) is the best book. In answer to some of your questions:

–No, I would not consider killing or cutting a nerve as a good option at all! It can lead to terrible pain, worse that what you have now. Sounds logical, but it isn’t a good idea unless all other options have been exhausted.

–I’m also very much of the “natural” route and avoiding harsh meds at almost any cost. Things I am doing include eating a very good diet (Paleo), avoiding neurotoxins via organic foods and other methods, and very good self care (no booze, etc…). I found a lot of good information on nerve care in the book The Wahl’s Protocol by Terry Wahls. I am very hopeful that nerves can eventually heal.

–I think most would agree that when you are calm and relaxed, that is when nerve pain is at it’s lowest. I get relief by lying down and relaxing, and fortunately at night it is almost nil. Heavy exercise makes nerve pain worse for most people. BTW–personally I do not believe it is necessary to exercise very strenuously to stay in good shape. Low level exercise such as walking is perfectly sufficient.

I have found quite a bit of relief through topical meds, in particular capsaicin, lidocaine and topical diazepam (as well as topical clonazepam). I think this is a great way to avoid systemic meds if it works at all for you. Most of the pain relief I have found has been by my own research–the doctors have not been much help! So I encourage you to not rely on doctors and do your own legwork as much as you can.
Sarah

Hi Sarah,

Thanks so much for your message and the information. I hope you don’t mind that I ask you (and anyone else who wants to chime in) a couple more questions…

  • Is caffeine also something you avoid? I assume it may be a trigger. It definitely makes me feel worse, but I can’t find anything else to give me energy/focus. I have it rarely, usually in a cup of tea. I hope the fact that I feel temporarily worse doesn’t actually mean that further damage is being caused I have no problem sticking to a strict diet (I am also on the paleo diet!) and giving up alcohol is also easy for me. I am just struggling with missing the occasional cup of coffee/tea, though.

  • Do the topical meds just numb your face so you don’t feel anything? Is it something you feel comfortable wearing all day, ie it doesn’t make your face sticky or have a strong odor or something? I assume each person responds differently to these. I am very interested in trying them first.

  • Has anyone had any luck using medical cannabis to treat this?

  • Regarding exercise, I agree with you that strenuous exercise isn’t necessary…the problem is that, ironically, I feel so much better mentally after an intense run or bike ride, despite feeling worse physically. It is a strange position to be in. I think it is very beneficial for my attitude and mental state in dealing with this – I just hope that intense exercise does not contribute to actually causing further damage. Actually, I just have to believe that increased blood flow is even helpful, despite the increasing crushing sensation I get…fingers crossed.

Thanks again for your response and it is good to meet you.
Mike

Hi Mike
I have a script for medical cannabis.
I find the indica oils and edibles help me stay asleep.I have not found any that works through the day.
I have sativa oil and it gives me energy but does not seem to block the pain.
Some people get some help with cbd oil but I have not.I find the higher the THC the better the response from my nerves.
I agree with Ziggy.The lower the stress the better.
For me being by a large lake with big waves is the most relaxing and I can put off meds for a couple hours and maybe even miss a dose-which is huge for me as I detest taking these drugs but am stuck (for now)

I have gained a lot of insight from reading your comments in this chat site. I can understand your pain as I have experienced the pains associated with the Trigeminal nerves. There seems to be many causes for activating our dilemmas. I have an inoperable brain tumor that causes my problem. I have been searching for other rhizotomy members but have not heard from any as of yet. Just like to know the outcome and how long they last for others. Good luck fellow TN and ATN members.
Gloria

Mike,
In answer to your questions–
–I gave up caffeine a few years ago, due to insomnia issues. That was before all my problems with ATN started, so I have no idea how caffeine would affect the ATN. I suspect it would make it a bit worse, but don’t know. I also have no idea if anything that makes the situation worse is causing more damage, but in general, anything that calms the nerve seems to help with long-term pain reduction also.

–The topical products I use are actually made for application to the skin and they are invisible and odorless. I mix products that are available over-the-counter. They do primarily numb the area. But my ATN is dental, so I use the topical on my gums and between teeth.

–I’ve used CBD oil, and it was not helpful. In fact it made the ATN worse. I’ve also tried high CBN (with a bit of THC) and I was very uncomfortable, I guess I have a low tolerance now. But many have have good luck with a CBD/THC mix.

–If exercise makes you feel good mentally, that’s a good reason to keep on. We need all the help we can get to keep out spirits up.
Sarah

Hi Gloria
Have you started your own thread on the rhizotomy?
I try to only start blabbing on about stuff that I have had some little experience with.
Brain tumors suck so bad.My mom had one but it was on a spot that made her happy all the time.It was so strange-but at least she was not in horrible pain.I could not imagine having that pressing on the nerve.
From what I have heard rhizotomies can cause more pain than they stop.My family doctor suggested one for me but the neurosurgeon pretty much ,very clearly ,forbade it.Not from him or anyone.If you have not read the book Striking Back -might be a good time.Libraries should carry it.or you can reach out to a trigeminal neuralgia group in your area.Not sure where you live-I could look it up for you if you want.
Are you getting any treatment for your tumor?
Please ,please start a thread-I am guessing there are others with a similar problem.

Hi Sarah
How did you do the clonazepam ointment?I have crushed a couple pills and have waited for weeks for the stuff to disolve in oil but it is still chunky.I end up with little orange grains all over have my face.
What’s the trick?

Thanks ellen5, I sent communications once asking about rhizotomy recipients, but as of yet no replies. Yes there are still side affects with the rhizotomy but it far out weighs the terrible pain I was having. I’ve had it a little less than a year now and just wanted to get some feedback from others. Thank you for your response. Gloria37

Ellen,
I dissolved the pill in just a bit of water. If you have the orange ones by Accord, they should dissolve quite well in plain water. Then you can mix that into a lotion of some sort. I never used a lotion, just a q-tip in the water mix for my dental issues.
Sarah

CWelcome New to ATN…no it isn’t nice to have it is a horrible painful and sometimes debilitating isn’t it ? I have had TN for almost 20 years too but I had a doctor at the time who hit the nail on the head by her diagnosis of it when I told her my symptoms. She sent me to a specialist who sent me to have an MRI nothing showed up. I have had Neuralgia since I was a kid and my younger years I am 65 years of age now and I have been taking Carbamazapine (Tegretol) since diagnosed by my doctor and she started me on 50gm in the morning and 50gm at night. It was ok for a while then I retired and moved to another state and seen 3 doctors who didn’t treat my TN but the 4th new one has treated me well by upping my dosage twice I have been taking 100gm in the morning and 200mg at night and sent me for another MRI which again showed up nothing.
She took me off my morning tablet 100mg and it was a mistake so she let me take it again after 1 week I had been in agony. When I didn’t know that I had TN I couldn’t stand light I would go to bed until the pain became tolerable and the light. I now have trouble driving at night beacause the street lights and traffic lights all had a yellow glow and the car lights would blind me so I haven’t driven at night unless it is a short distance around the town I live in. You are not alone this website is the best thing that has been started and going for years for people like you and me any many many more with ATN and TN so I hope that you get and keep getting good information and make lots of friends to be able to talk to about your pain. I still get the pain and where the side of my head and face feel numb and the electric shocks in my gum where I have no teeth so I have to take extra pain killers to settle it down to get to sleep. As I write this I am in that situation. Good luck and see you on living with pain. Cheers

Mike, etal:

Sorry you have to join us. I am the support group leader for the Sacramento, Ca area. First, as others have said, the bible is “Striking Back”. You can buy it on line or go to the TNA/FPA web site where it is for sale. It was co-authored by Dr. Ken Casey, perhaps the most knowledgeable neurosurgeon in the country regarding TN. He is in Detroit. He is writing the third revision of “Striking Back” now, which is currently being edited. You can get a lot of info and support by contacting the TNA/FPA in Florida and also find your closest support group.

Each patient is different. Acupuncture works for some, just as there are different responses to the various medications, Tegretol (Carbemazepine) being the best and often diagnostic although not all tolerate it well. Of the surgical options, in my opinion, the MVD (microvascular decompression) is the best but also the most invasive. Natural approaches work also depending on the patient. ATN, or type TN-2 as it has now been redefined, can be approached, surgically, but the success rate is not as high as TN-1. Killing the nerve is not the best solution as it will leave you numb and can also cause loss of pain sensation in the cornea and you can have corneal damage and not know it. The other surgical procedures, such as Rhizotomy, Balloon decompression, glycerol injection ( not used much anymore), Gamma Knife ( radiosurgery) and Cyberknife all damage the nerve to one extent or another. Exercise is always beneficial as it releases endorphines in the brain which are the “feel good” chemicals. Besides you can’t neglect the rest of your being because of the facial pain.

A lot of neurologists are excellent at a host of problem such as movement disorders, migraines, back and spinal issues, etc. However, you need to find one that is totally up to date and interested in treating an, admittingly difficult diagnosis to make and treat, such as TN. I no longer use a neurologist because I know more about TN than some of them do.

Finally, are you confident, and is your doctor is confident of the diagnosis of ATN or TN-2? The fact that he/she calls it ATN instead of TN-2 makes me leary of how up to date your Doctor is on the subject.

Just as an aside, has anyone considered that your pain may be from cranial arteritis, an inflammation of the arteries? Hope this helps you a little…Allan

P.S. V-B12 is theorized to help rebuild the myelin (the coating on the nerves, or insulation if you will). I, personally, had my MVD years ago but the pain returned after 4 years. I was on Tegretol, Baclofen and Neurontin for years and, suddenly, went into remission almost 12 years ago. I take large doses ( 5000 mcg) of B-12 daily, sub lingually (under the tounge). I can’t prove it works but I wont stop taking it as I am convinced it has helped me stay in remission.