Hello everyone! My name is Cheyane and I am 23. I have Trigeminal Neuralgia in the right side of my face (T3/Mandibular Branch). I won’t tell my entire story as it is very,very long. I had a terrible reaction to the medicine called Carbatrol and I am in the process of weening myself down off of it per my neurologist. She also put me on Baclofen and gave me Klonopin for emergencies. I have been getting twinges for about 3 days, I’ve been taking about today and the twinges seem to be worse … whether it’s from talking or they’re actually getting worse…I am not sure. I guess what I wanted to ask was : in your experiences-- do twinges always lead to full blown lay-on-floor-and-cry attacks? I am very scared and I’m already an anxious/nervous person… so I’m sure that doesn’t help. Any information helps. Thank you so much.
No twinges don’t. Lots of folks with or without TN have twinges from time to time for all kinds of reasons. What will happen is that if you build anxiety every twinge change etc YOU WILL have a major attack… Nobody clearly understands the role of anxiety and pain beyond the fact anxiety does change the way you immune system reacts to pain stimuli. Anxiety is NOT the cause but it does feed the disorder. I could go into a long dissertation about the biochemistry that we do know but suffice to say EVERY medication that works for TN works on that immune response chemistry. The advance in treatment have not come from surgeons or even neurologists but rather Rheumatology and specifically Psychopharmacology.
When you are getting those twinges, there are some things you can do. For many mild exercise leading to aerobic effect help, others find solace in things like hobbies, volunteer work, medictation, prayer, sex, binge watching Netflix ANYTHING that reduces stress levels/anxiety and moves your mind elsewhere makes a huge difference Wondering if this the “big one” coming is likley to make it so.
Thank you so much. I very much needed to hear that answer. I am a very anxious person and I know stress is a huge trigger. I have been trying to find ways to keep my anxiety down as I do not get any medication for it (except for an emergency klonopin script my neurologist gave me) but I won’t take that unless I am having severe night attacks. I am going to concentrate on finding ways to lower my stress level. I’m so glad I found this community. I don’t feel so alone anymore and that’s such a blessing. Thank you, again.
Sometimes for me the twinge just means the nerve feels irritated. I see it as a little baby thats annoyed and sometimes calms down on its own over time. When I start to get twinges at times that is a messages for me to decrease stimulation so I might take it a bit easy, go to sleep earlier, and yes, reduce my stress level. I also saw a hypotherapist a handful of times. At first I resisted the idea, as I KNOW this is not mental. But what she did help me with was learning how I can turn down my facial and neck tension with the hypnosis we did. I listened to these tracks she recorded on my own. Now, when I feel a twinge or pain I immediately start focusing on my jaw, chin, neck and breath out, work to relax those parts of my face and neck. That helps me decrease the pain and tension and prevents twinges building into those electric shock sensations I get or increased pain. I also think its important to be in good contact with your doctor about your symptoms, have a trusting working relationship with him or her. Sometimes the twinge may mean you will have increased pain or nerve sensitivity. Meds can help, in addition to the relaxation strategies. When that happened to me due to a medication reduction I called my neurologist immediately and said “this new dose seems to be not working, I started to be feeling worse, what can we do?” I understand how scary these twinges are, they happen to me all the time when I am working and I find them distracting. Sometimes I freak myself out worse and I tell myself “Oh my god its getting worse” “Someone can tell” “You are going to have a shock soon” Then I get so tense my pain gets worse and worse and I do start getting more pain and shocks. Other times I surprise myself when I slow my breath, breath out, relax my face, tell myself its going to be OK. Sometimes I do have to take some medication when I feel more pain or more twinges, which my Dr. gave me the OK to take as needed, its not a pain med, more of a nerve med, called Gabapentin, Hopefully you and your Dr. can talk things through and figure out what feels intolerable and what you can work on coping with on your own (the anxiety part). I am so sorry you are having to deal with this Cheyene. I am sending you out good thoughts for healing and hope.
@shoshana302 Thank you so much for all that info! Only thing I want to say is… a twinge for me is a little shock… I don’t know if that’s a “normal” twinge or not. I consider “the twinges” tiny electric shocks I expierience throughout the day, and when I have attacks the shocks grow into 1-2 minute long shock/stab/burn attacks that I could have for 10 minutes or all day long. When I came out of remission this time I had severe attacks for 5 days …I couldn’t eat, sleep, talk, NOTHING. I thought I was going to die. I found an old perscription of carbamazepine THANK GOD! and 2 days later I was able to sleep. Then a week later I got into my neurologist… I think they should have emergency appointments! Anyways …sorry for writing all of that. I guess I just wanted to ask …what is a twinge for you? Does it hurt ? Or is it just a little tingling in that area? Like I said, mine is a little jolt…I have been getting them quite a bit throughout the day. I just try to relax and breathe…as I am a very anxious person and I’ve noticed if I get worked up it brings on more pain. I will take this pain over a full blown attack any day! I am trying to ween off medicine that gave me a terrible reaction. (Carbatrol) I want to ask my neurologist about Neurontin (Gabapentin) as I’ve read the side effects are a lot more mild than carbamazepine. Thanks again for the reply! You are so kind.
@ModSupport What are twinges for you? Mine are little shocks throughout the day. Is that a normal twinge? Or have I been using this term wrong the whole time?
Hi Cheyane, Good question to clarify. When I heard twinge for you, I think you and I have the same kind of symptom. I have constant pain (TN Type II symptoms) which is burning, pins and needles and pain that feels like I have had or am having a root canal in my teeth, usually left side only but lately right side is involved So that is my usual. On a bad day I too get the twinges, which for me are little shocks or stabs. I can also bring them on by certain positions of my neck, certain noise exposure (like a drill), or extended touch. Early on in my diagnosis I had episodes like you described (Type I I believe), especially until my Trileptal medication got to the correct dosage over the two month period. I was literally in bed or on the couch, subjected to little or big shocks all day, crying, feeling like my body was a torture machine. It was indeed something that made me not want to live anymore. Now, the trileptal keeps these symptoms down to a low roar. So I too get these little jolts/twinges, I can breathe, relax, untense my face/neck, and most of the time nothing happens. Sometimes if I get a number of them on top of each other, and I’m also having lots more facial pain, I pop a Gabapentin. If I don’t, then sometimes I have a BIG SHOCK. That might mean in public, at work, and if more than one comes I sometimes start to cry a bit out of control. The crying sometimes feels almost neurological, meaning after 2-3 big shocks I can’t seems to stop the tears, it feels very intense and primitive, the need to cry and shake, its awful.
The gabapentin seems to really help but I wanted to be clear I don’t take it to substitute for the Trileptal (Oxcarbazepine), its on top of that seizure med. Its not a cure but it seems to work in about 20-30 minutes. I get a bit drowsy though. At my very worst I was taking up to 6 a day, mostly worse pain was at night. Side effects made it hard to think and drive and remember things, so for me that medication wasn’t a good one to take at high doses.
Sorry I am writing so much, its just amazing to write to someone who GETS the suffering. Its been over 2 years since my diagnosis and I still can’t believe this is happening to me. Its such a crazy crazy thing to have these shocks and this constant pain. I’m so sorry to hear about your relapse.
I am so sorry you are experiencing so much pain from your TN2…that sounds like pure hell.
I have “Classic” Trigeminal Neuralgia… when I come out of remission … if I’m not on medicine I get shocks all day long … eventually turning into full blown knees-to-floor-excruciating pain attacks. I am weening off the Carbatrol as it gave me a horrible reaction to the point I broke out in ulcers all through my mouth… so my doctor has told me to get completely off and start baclofen and gabapentin… I’m down to one capsule of carbatrol a day and I have shocks all day long … even though I would take the shocks over full blown attacks… they also hurt like hell and scare me to death! I am starting my gabapentin today over top of my carbatrol, then maybe by the time I’m off the carbatrol the gabapentin will have built up enough to work! I hope you find relief some way, and do not ever apologize ! It’s a wonderful feeling knowing there are people who know how much pain you’re in and that you’re not alone. I’m always here to talk … as I have been pretty much bed ridden with this pain! Talk anytime.
how true! love it thanks for sharing
I’m thankfully in “99% remission” (it’s always lurking) and currently med-free. I occasionally experience what I call “electrical fluttering”. When I’m in full relapse and on meds, my electrical fluttering (in V1 branch) can be a signal that my “electrical power plant” is gearing up to viciously attack me in about 15-30 minutes, but not always. My V3 attacks never warn me. I just fall to the floor and scream and cry for anywhere from 3 minutes to an hour. That would be when the disease earns it’s nickname. Having dealt with this on-and-off for 5 years, both sides and mostly V1 and V3, and having talked with a lot of people from around the world, no two people experience the exact same symptoms. Good luck to all. Stay positive and enjoy every painfree moment of life!
Be strong my friends. So sad to read all of your experiences. I’ve had TN left side for 10 years. I have what I call zips, zings, stabs, on a regular basis. The full out, fall to the floor is the most horrible experience. My current situation is the beast is sitting in my left jaw. Talking is tough, eating, drinking, smiling, etc. It came out of remission about 3 months ago, the longest ever! Be calm, I know its very difficult.
Hello there - you have so much support here! Sometimes my twinges do lead to attacks and sometimes they do not. I would suggest that you monitor your twinges and keep a record of what they feel like and what happens later on. I’m on ten years now bilateral and I’ve learned to observe the twinge and what type of twinge to help predict or at least be aware of what is to come. It’s not an easy road that we walk but you do not walk alone- many of us are here for you. Sending strength and blessings to you!
Watch the klonopin is addicting. I am 74 and deal with it everyday.
I would like to know what your treatment is or was. Thanks. Male 74 years old. I have been in remission once and was great but in early 2020 it returned. Now on gaba and oxycarbazedipene and in an adjustment period with neurologist