TN and ATN - How Everyone is Different

I knew before my MVD that I had Atypical Trigeminal Neuralgia (ATN) sometimes referred to as Type 2 TN as well as Trigeminal Neuralgia (TN) usually referred to as Classic or Type 1 TN. They are very different things, ATN does not, usually, respond to an MVD surgery. However, it can help classic or type 1 TN. The medications used are usually the same for both, but there are some very significant differences.

ATN is a constant aching, drilling, throbbing, debilitating pain that NEVER goes away. It is present 24/7 but can vary in intensity at any point during the day. There are no pain free hours or pain free days, there is just PAIN.

Add to that the sudden, uninvited zaps that can be triggered by the slightest movement or the wrong environment and those zaps can keep going for seconds, minutes, hours or even days.

Life with TN or facial pain is different for everyone. They can be very well managed on medication and able to function at times, enabling them to work, socialise or simply make it to the shops. However, they continue to have flare ups with periods of dreadful uncontrolled pain, but it passes and they can continue living, but, with the fear that it WILL all happen again. Obviously there are many variations, but most are coping with multiple medications, the side effects, the impact on their lives and let's not forget, the pain! 

Others have severe, unmanaged pain that is constant and prevents them from functioning and having any quality of life, simply existing on a cocktail of medication and desperately trying to cope with environmental and physical triggers, but separated and secluded in many ways from society. This description is how it feels when you have TN and ATN. You may get a 'better' day, but that day will still consist of varying degrees of pain.
Of course there will always be variations, but life with TN is always dictated by pain or the various side effects of medications and treatments. Those 2 things are something all TN sufferers have in common, with the exception of the few who are unable to take medications due to allergies or serious side effects.

I asked other TN/ATN sufferers to describe their pain, life, environment, side effects (or anything else they choose) in one or two words. Here are a list of the answers I was given.

- Debilitating - Insufferable - Overwhelming - Prisoner - Unstoppable - Desperation - Hopelessness - Misery - Anguish - Unbearable - Relentless - Draining - Incapacitating - Continuous - Life changing - Hell - Excruciating - Challenging - Nobody understands - Shocking - Lonely - Invisible horrible pain - Nightmare - Agonising - Never ending
- Tormenting - Affliction - Punishing - Painful - Icepick jabbed in the forehead  -Constant - Unspeakable - Hellacious - Horrendous - Courage - Cruel - Homicidal - Evil - Torture - Possessed - Disorientating - Mind-blasting - Faith-testing - Suicidal - Limbo - Fear

I then asked TN sufferers if their pain was manageable, well managed or not managed very well or at all. These are some of the answers I was given. Names have not been included as I informed everyone that their answers would be anonymous.

• My pain isn't well managed at all despite taking Lyrica, Nortriptyline, Tramadol, Co-codamol, Clonazepam, Oramorph (for breakthrough), Meditation, Reiki, Crystal therapy and Relaxation. I've also had a failed MVD that has caused AD (Anesthesia Dolorosa) which cannot be treated. I have tried psychological input and acupuncture. I wear a snood, even in the Summer so I can cover as much of my face as possible and protect it from the elements. I try to avoid as much movement as possible because the pain escalates very quickly and then nothing but time will help.

• My pain is NOT managed well despite taking Gabapentin, Carbamezapine, Morphine, Baclofen, Toradol and Trazodone. I also had a failed Gamma Knife and a failed Rhizotomy. I am not a candidate for MVD due to previous interventions. I currently see my Neurologist for additional pain shots when necessary and I get Chiropractic massage and lazer treatment with heavy concentration on my neck and shoulders on my TN side. 

• Nothing controls my pain, I hurt everyday all day. I take a million pills a day and none of them help any more. My Momma has taken me for acupuncture. She had creams made for me and lots of surgeries....nothings helps.

• My pain is intermittently managed with Gabapentin. I try to calm the pain with a heating pad, and attempting to distract myself with my iPod or by going on line (until the pain is so intense that I can't deal with distraction).

• My pain is not well managed at all! I am on Neurotin and Hydrocodone and Oxycodone! I also use a TENS machine sometimes! It just depends on how bad it is!

• I think its managed with very high dose of Gabapentin and other meds I can't remember but they just have me believing the TN is under control ... It's certainly attacks whenever it wants to despite my meds x

• Hi Nikki Im one of the lucky ones my ATN is well managed on Lyrica and Metoprolol Tartrate. I've had a period of being symptom free which was brilliant. Haven't done any alternatives but found eating healthy, weight loss and exercise when able has helped feel more positive for the future ...never give up hope x

• My pain is fairly well managed at present: I am on Topiramate with Amitriptyline at night. I also take magnesium, calcium, vitamin B12, and zinc, Tramadol and Dihydrocodeine - both on stand-by if needed. The spikes are lessened to a fairly low level - but still can be felt, and I still can feel the the triggers and the TN responds to changes in weather pressure and so on. All this does is lower the degree - not remove. I also use my wheatie - heat pad zoomed up in the micro, drink loads of herbal teas, try to avoid caffeine as much as possible - it seems to set my TN off - as it did my migraines some decades ago - very little alcohol - doesn't suit. Avoid cold, wind especially - wear a snood pulled right up over my face with only my eyes showing!! Every so often I have a neck/back massage with aroma oils - esp lavender - really helps. I try to keep as fit as possible - swim about 1 mile a day 5 days a week - can't do running/jogging - impact sets off TN!! Sorry for the long answer Nikki!! Oh - I do a wee bit of yoga - more or the meditation sort - nothing with head down! And balances are really very hard, but breathing and mind-set very helpful!

• Hi Nikki, mine is not managed well but I do have low pain days every so often. I take Carbamazapine,Gabapentin, Naproxen, Oramorph on stand by for bad days, Temazapam, vitamin B12 injections 3 monthly, folic acid and magnesium. I also have an alice band(material) which I wear across my forehead to avoid breeze lol x

• Amitriptyline works for me.

• Recently started amytriptiline again, headaches were horrendous to begin with, possibly breakthrough pain but seems to be calming down now, I take Co-codamol too. I dread winter, as cold wind gives me horrendous head pains. Stress can bring on the pain too, also have rhinitis so strong perfumes irritate my nose then triggering the nerve pain off too.

• Tegretol and no stress; my biggest trigger is fatigue.....so plenty of rest when I can.

• My pain is much better than without meds but it is also constant...always there! Heat helps sometimes. Sudden lightening jolts are managed, but now it is this burning that is sometimes so difficult to bear. On tegretol, baclofen, lyrica and nortryptilline, with dilaudid as needed. Meds leave me foggy and loopy but I will take that any day if it helps lessen the pain!

• Right now my pain is manageable. I am on Nortriptyline, Klonopine and Topamax. I am always at a 3. I have tried acupuncture and it helped a little. On bad days my pain gets up to a 10. I don't have pain meds. But I am going to a pain clinic next month.  I should add I do have to go to the ER at times when the pain gets really bad. When I do they give me Demerol, Toradol and Phenagren

• Never pain free and never below a 4, but would say pain is kind of manageable after stopping working... the daily challenge is to figure out how much can be done before pain gets to high (ATN/TN is just part of afflictions I have) ... some days I calculate with more pain the next day as I do activities that I know will raise it.... I'm allergic to anti seizure meds and opium derivatives so on no meds for the nerve pain... on Naltrexone 3,75 mg (LDN), Zopiclone to sleep, and allergy meds... and migraine tablets and regular painkillers (Paracetamol and Ibuprofen) when needed for other pain. Most effective for me is (sadly not to be able to work) deep breathing, some yoga and meditation.

• Hi hon, my pain is fairly well managed, I take lyrica and amitriptyline. Pain killers don't help but I have co-codamol. Heat is the most helpful thing for me, heated wheat bags and hot water bottles. I've tried other things but haven't included anything that isn't effective.

• Some days are managed while other days are unmanageable. I have tried Nuerontin, Carbitrol, Tegretol, Topamax, Nortriptyline, Lorazapam, many other meds including pain meds, acupunture, heating pads, yoga, exercise, rest, meditationI am only taking triliptel 3x daily pain hydrocodone twice day and lorazapam to sleep. My appt in in 2 weeks and he will load me back up again but sometime I just have to clean out my body

•  Tegretol is the only drug that works for me.

• Tegretol was the first one I tried and it worked unfortunately I was allergic to it which limits what I can take..currently taking lyrica 3 times a day which I need to increase from 400 total to 450. Also take Cymbalta.

•  Limiting ...either from pain or side effects from medications or lack of sleep.

• I am currently taking Oxcarbazepine and Tramadol. A "good" day for me (once or twice per week) is waking up to a level 3 pain and typically end the day at a level 6. Average day is waking at a level 3, having a few stabbing attacks throughout the day and ending with anywhere from a 6-8, depending on what other pain I have from my other issues. On very bad days, days when I'm also dealing with migraines, leg spasms from my MS, etc, it tends to set off the stabbing attacks of my TN even more, where I could have near constant stabbing for hours on end which of course raises the pain I have in between attacks. On those days I am just non-functional. I would say I have those "bad" days at least a week out of the months, not necessarily with the days being consecutive. So, to simply answer the question, I don't consider it to be as well managed as it should be.

• Managed with the help of Tegretol. Anxious, because I never know when th shock will come. The last one was drinking cold water. Lonely disease. If it gets bad like the last one, I have to have a Radiofrequency Lesioning again.

• I would say I'm managed as well as a person with AD can be - Klonopin, Morphine, Marinol, Dilaudid (for breakthrough, as needed), Robaxin & Tizanadine (muscle relaxants due to a total joint replacement I had in my jaw). I'm considering getting off the muscle relaxants & go with Botox. Stay on Marinol (this one really helps w the burning) & only use pain meds as needed. Although I tried to come down before & landed me in the hospital, my doc is very apprehensive. But I can't keep living in pain & still be taking meds!

• Not manageable I take Gabapentin, Tegretol, Cymbalta, Hydromorphone, Klonopin. I'm never without pain and it never is below a 5.

• Pain is not managed. I'm taking Gabapentin which makes me "weird" and off balance.

                                               Image by Nikki Samuel