Type II Flares?

Can atypical bilateral TN come in flares? I’m not diagnosed yet. Neurologist appt is 7/31. I feel like I have some level of pain on a daily basis but sometimes it’s so mild that I don’t even notice it. Those days I wonder if it was really that bad and if this is all in my head. Ive had these flares for many years. The last flare has lasted around 2 months, with fluctuating intensity. Recently I’ve had a break from the severe face pain, but its been replaced by migraines and neck pain. If it isn’t one thing, it’s another. When I have the breaks from the face pain it makes me question the severity and my sanity. However i routinely say “i could easily go to the hospital right now, my face hurts so bad” I can’t even enjoy a almost pain free day anymore because I am so focused on what changed, why pain yesterday and hardly none today? What could it be? Is it this, is it that? Is this the “pre TN stage” I’ve read about? I just wonder what everyone’s experience is and if anyone has been through something similar?

Sara,

Absolutely. At least from my experience…I had unrelenting pain from Jan '12- first week of February…then, it seemed to back off a bit…for about a week…then come back with a vengeance and not leave for eight straight months. Currently, on my medication regime, I have break through pains and flares happen, but the meds lessen the intensity and duration a bit. When I think back about this time last year…it makes me grateful, fearful and cringe, all at the same time. I wish you a successful doctor appointment, and keep in mind: if the first doctor does not understand TN, keep searching. Don’t give up. Most doctors know very little about it, including diagnostic neurologists! I often get migraines and neck pain between flares, by the way…I think mine is stress from worrying about being sideswiped by a flare.

Saber

I have break though pain now and then, but its not bad. I will say this. If your not on meds yet for this, it can take some real work to get used to .

I kept stopping it, as I was so mentally sure I was going to get better, and this would go away.

Well, that dream is over and I realized that its the meds that are working. I hated the drugged feeling I had with it. I started just taking a larger dose at night, since my doc only gave me 100 mlg pills of gapapintin. My Nuro said I could take three four times a day. I could never stand that much. I take two at night, and now one in the morning, noon, and before supper and I have gotten used to it. It took a month, of working with it, to find out what works for me. Whatever they give you, if it bothers you, hang in there, and it will get better.

Well, I do not get the electrical type pain…mine is severe, unrelenting, sometimes throbbing…searing pain…but, I have it bilaterally and in ALL branches…I am just blessed to have a great team of docs, or I would have never made it through…

My pain is not electric either, more like somone takes a small hammer and smacks me on my cheekbone or just presses it hard on my jaw., or brow. Sometimes my teeth roots just ache, but my pains are only about thirty seconds at a time, just most of the time. I have lesser pain on my right, not often. Major short bursts of deep brain headaches, as well. Before I found meds for this, It really just wore me out.

I wish mine had ‘cycles’, like labor pains…when it flares, it flares 24/7… only relief is through meds, which after a few months of trial and error, do seem to help. I have recently gotten a topical, as well, but have not used it yet.

Yep! Well, I am very fortunate as I have never had both sides flare simultaneously…they seem to ‘tag team’. I went years with just the left side, then the right began. I totally get the ‘cold pain’ thing. I find describing the pain to be near impossible, but when anyone near me gets ‘brain freeze’ from eating/drinking something cold…I say, 'yep, but mine doesn’t go away and is 1,000x’s worse and all over. Lol.

I think most traditional meds will be hard to take and breast feed. I am so sorry that you are experiencing this as a new mommy. My son is 18, I do not know how I would have functioned with this AND a baby! You are in my prayers.

PS: about a month prior to my diagnosis, I also found the Wiki site…and was, “Holy shit, that is IT!!”

Hi Sara,

I understand how you feel! thank goodness someone had the idea to make it into a separate wikipedia page! Mine is bilateral as well.I can go for days feeling fine and I begin to think its all in my head and then i get flare ups which remind me that no unfortunately this is very real. My pain came out of the blue and intensified very quickly over a week of panic, scrambling to see all kinds of doctors, it was chaos and very scary because no one seemed to know what was going on and I finally diagnosed myself through wikipedia. The pain got so bad I was admitted into the hospital until we got it under control with gabapentin and clomipramine (an antidepressant, aka anafranil). It took a while for the meds to begin working properly but six months later I'm still here and knock on wood, doing well. I've travelled with friends, continued with graduate school, enjoyed things I like doing again but believe me six months ago i would have never imagined myself here today, so hang in there, stay positive ( even though its really hard, i know!) but the right mix and dose of meds can make all the difference.If you feel like the doctor doesnt get you, try not to get discouraged, just keep looking for someone else who does. It must be so tough dealing with all of this as well as having a baby to take care of, I really hope you find more relief soon, keep us updated! hugs

Hi Sara So sorry to hear of your problems. I was recently diagnosed with a condition called Hemicrania Continua, This comes in flares with lesser pain in between although in recent years the flares were almost continuous. Just wondered if you get any other symptoms such as blocked nose, sinus problems, watering or swollen eye. I'm glad you have a Neurologist appointment soon. If HC is suspected Indometicin completely gets rid of all the symptoms. I have botox now as Indo cant be taken all the time. It works really well for me. I hope your Neuro gets this sorted. You have been in pain far too long

I don't have ATN but symptoms of HC are somewhere between ATN & cluster headaches hence I ended up here. I was only diagnosed in March so spent many years researching and came upon this support group. It was thanks to some advice from Red that I finally realised what was wrong with me. This support group has offered me more help, advise and support than anywhere else so you've definitely come to the right place! Hang in there and keep positive. There are so many different drugs available now to help I'm sure you will get something to suit you. If you don't get the help you need from one doctor then go to another one and insist they help. Unfortunately, with these conditions we are finding that we have to battle a bit!. I hope you are out of pain really soon, take care

Sleopard41, just read your post about the "cold pain" thing. I have bilateral facial pain, ATN, atypical GN and I do get cold sensation pain and wow it is maddening. You are the first sufferer I have found who gets this too. Also, you mentioned a cream, what one are you using? I tried one but it did not help, my cold sensation worsened. What meds are you taking? Thanks, Sharon
Sleopard41 said:

Yep! Well, I am very fortunate as I have never had both sides flare simultaneously...they seem to 'tag team'. I went years with just the left side, then the right began. I totally get the 'cold pain' thing. I find describing the pain to be near impossible, but when anyone near me gets 'brain freeze' from eating/drinking something cold...I say, 'yep, but mine doesn't go away and is 1,000x's worse and all over. Lol.

I think most traditional meds will be hard to take and breast feed. I am so sorry that you are experiencing this as a new mommy. My son is 18, I do not know how I would have functioned with this AND a baby! You are in my prayers.

Sharon,

It is maddening! I just recently discontinued Lyrica, as I saw no real appreciable benefit. I take Baclofen, Hydrocodone and a very low dose of a much stronger pain killer. My topical has numbing agents and ketamine. It works wonders! It is made at a compounding pharmacy and I really do not know all that is in it, but please keep trying! They can work! I have cut my oral meds to a third and may eliminate them all together!

Saber

Thank you for your reply so quickly. I do believe the numbing cream I got does have ketamine in it but unfortunately it made my face burn. I also take a low dose of baclofen, percocet, and a stronger time-released pain med low dose, I suppose they all help all together. I do tolerate gabapentin, but it is also a low dose, to high and my legs swell. I don't think I am at the therapeutic level but I think low doses of all the things I take are the best option without losing your cognitive function. Oh yes, lyrica made me batty and swelling was terrible within 10 days and the effect waned as the side effects increased. I was very hopeful about the compounded cream but I am reluctant to put it on my face. My skin has always been sensitive to creams, even sunscreen, so that is just me. Very glad it has helped you. I bet you hate winters and I live in Florida but still the cold winds are horrible, Thanks, Sharon

Sleopard41 said:

Sharon,

It is maddening! I just recently discontinued Lyrica, as I saw no real appreciable benefit. I take Baclofen, Hydrocodone and a very low dose of a much stronger pain killer. My topical has numbing agents and ketamine. It works wonders! It is made at a compounding pharmacy and I really do not know all that is in it, but please keep trying! They can work! I have cut my oral meds to a third and may eliminate them all together!

Saber

Okay, called the compound pharmacy and got all of the ingredients: ketamine 10%, clonidine 0.20%, gabapentin 6%, amitriptyline 3%, mejenamic acid 3%, lidocaine 2% and Hydrocodone 1%…that is the topical. Hope that helps!

Thank you! Mine is similar, 4 of the 7 ingredients are in it, ketamine, clonidine, gabapentin and lidocaine. I need to find the one that makes my face burn and eliminate it. My ears as in ear lobes get very painful along with earache, yesterday I put mine on my ear lobes where it does not bother me...going to do that. These creams are very expensive but if you can find a combination that works without a side effect I am willing to try it again especially since your combination helps the cold pain. Have a great day Sleopard41 and please keep me informed of anything else you try in the future...you are the first sufferer I have found that gets the cold pain in the face. The trigeminal nerve does control temperature sensation but when I have told my neuro or pain doc about it they look at me like I have 2 heads! Sharon

Sleopard41 said:

Okay, called the compound pharmacy and got all of the ingredients: ketamine 10%, clonidine 0.20%, gabapentin 6%, amitriptyline 3%, mejenamic acid 3%, lidocaine 2% and Hydrocodone 1%...that is the topical. Hope that helps!

Hahaha, yes, Sharon, I know that ‘look’ well. I get both burning pain and cold pain. Weird. My neurologist never quite grasped the pain involved so I sought out the top pain specialist in Houston. As soon as he read my diagnosis his eyes filled with tears and he said he would help me. We have been working together for almost a year now and he has helped me, tremendously. I hope you find a doctor that has really studied TN and knows the pain involved.

I feel you, and can relate to exactly how you are feeling! I too questioned was it "in my head" but as time has passed, and I've grown stronger, I realize this is not my fault (with the help of this support group and family/friends). It's not in your head, stay strong! And don't let any doctor make you feel it is your fault or you are the cause!

The pain for me is 24/7 and can get worse with stress, heat and when I am still and stop moving is when I really notice it!

stay strong and get as much support as you need!


kerry, yes, I got that "Do you need to talk to someone" from my neuro's PA who I see between botox. I almost wanted to slap her, she is very young but it was what I was thinking I would have liked to have said to her, "I think you need to go back to school." My neuro believes me, when I see him next I am going to tell him I get nowhere with his PA. But I have been tried on 4 different meds, even got some relief initially but then it waned and side effects made me stop. Both my neuro and PA are trying all the meds that are usually prescribed, it is not for lack of trying, but when I don't get better I very much dislike the response, "Do you need to see a psychiatrist?" My neuro has never said that to me, just this PA. I get it all talked out with this support group.

Also, very true when I am feeling somewhat better staying active like spending time with my grandkids helps me perceive the pain differently. It is true, when I need to get off my legs because of all the failed back surgery, my legs begin to feel better but this pain won't allow me to rest, I do notice it more.

The only way I get it down is with the combination of low doses of everything I take, a short nap and for minutes when I first wake it is calmed down.

I do like to paint but haven't been at my table for weeks, I do like to swim but have not been keeping consistent, the exercise is good for me. Today I will swim. Yesterday I sketched out my next painting. I get bummed when I get off track doing the things I enjoy, my grandkids, painting and swimming. Just this week I have had a mild cold, it does worsen the facial pain. Next week will be better...thank you kerry and Sleopard41 for your feedback. I have been using the cream I have on my ears and some of the cheek area where I can tolerate it and found it to be somewhat helpful.

On my way to the pool! Sharon
kerry said:

I feel you, and can relate to exactly how you are feeling! I too questioned was it "in my head" but as time has passed, and I've grown stronger, I realize this is not my fault (with the help of this support group and family/friends). It's not in your head, stay strong! And don't let any doctor make you feel it is your fault or you are the cause!

The pain for me is 24/7 and can get worse with stress, heat and when I am still and stop moving is when I really notice it!

stay strong and get as much support as you need!

That is so horrible about the PA. I Am lucky to have found a skilled psychiatrist who has also dealt with chronic pain, and puts the behavior of these medical “professionals” in perspective for me. So I don’t in fact- go crazy! He calls it the “mother hen” phenomenon at the doctors office. Whomever answers the phone and has to deal with us requesting more narcotics for our pain is to give us a hard time, be rude, ignorant, and protect the doctor from having to deal with us. Welcome to our bureaucratic society where the government dictates our treatment and doesn’t leave it up to the doctor because there have been to many “Dr, Feel Goods” abuse the system. I’m trying not to be jaded but I’m so sick of being harassed by my doctor’s nurse about why it is I need pain medicine! I’m not the drug addict, this is not enjoyable, it’s painful and I just want to get through my day with as much normalcy as possible, and not deal with you on too of this debilitating disease! Since one of my doctors nurses took it upon herself to play doctor I just ask for him to return my call or his other more compassionate nurse so it’s less of a headache getting a refill of the Percocet or pain patch.
Thanks, that’s my rant!