Hi everyone, I’m new here. I was diagnosed about a year ago and that’s when it all began. I’ve only been on one medication (gabipentin). I’m 19 and just looking for more information than I can find online. It’s not that helpful I ended up with more questions than I started with. Like why I have it so young, ways to ease the pain and I still can’t tell if I have ATN or what. I have migraines and a couple other issues, so I went to a neurologist and he just basically made quick note of the TN and ignored it after. I have had a CT and a MRI that came back normal so it’s not from a tumor.
I am pretty new too, my pain started 10 months ago and never really stopped for more than a few hours, but I will share what I do know. I am 24, not as young as you are, but in the "your too young for this" bracket. I am sorry to welcome you to our little club, I am glad you and I both found this website, it has helped me a lot.
The link here: http://www.pixton.com/comic/b1i49swv Is the best source of simple information I have found, I use it to explain to everyone why my life fell apart in the last year. Both forms of TN (TN1 or TN2/ATN) usually come and go in "episodes' or "attacks" but the type of pain is different and TN2 attacks generally last longer and cause pain all the time during the attack. It took 6 doctors and a dentist, 4 months to diagnose me because none of them had ever heard of TN2 (which I have) and so even when some thought it might be TN no one, including me, thought the symptoms fit.
Most of us sufferers have to try several drugs before we find one or a combination that works for us, I have tried 4 so far and have not found anything that helps without terrible side effects, but don't let that worry you. I have a history of strange reactions. If you are still on the basic starter dose of Gabipentin your doctor should probably up it, I doubled it twice before I saw any relief, but it is different for every person.
As far as the information I have been told and researched; unless you can tie your first TN attacks to an injury, or dental work, no one knows why some of us get TN young and some get it old, and most never get it. Also there seems to be little explanation on why some people feel TN1, TN2 or both types of symptoms. Maybe the moderators on here will be able to answer that but as far as I can tell it is down to luck and the mysteries of our bodies.
Pain levels can vary especially if you are on a medication to treat it, here is a chart I like to show my friends: https://s-media-cache-ak0.pinimg.com/736x/07/e7/c9/07e7c9915f52b1945603f0c83a48e4fe.jpg If you are on medication and the pain comes anyway (break-through pain) it will feel more mild, somedays I just am more mild even without medication. So, you don't have to assume that because it "isn't that bad" it isn't a TN attack.
I hope some of this info is helpful to you, good luck with doctors, and I hope you have many pain free days.
Thanks, Due to other circumstances my life fell part before this so any surport I can find would be amazing. My dose has been raised and on this particularly painful attack I am taking slightly more than normal which my doctor said was ok until I can get in but that’s not helping. This is my second one that’s been extremely painful without the meds I wouldn’t be able to handle it and its on the other side of my face, my left. Actually a month or so after it began I started to get the little shocks on that side and not much else to speak of from my right side. I get this burning sensation that kind of pulses, along with a stabbing that’ll be like one giant one or a bunch of hot little needles. Sometimes it barley hurts it’s just enough to notice.
I couldn’t imagine it being none stop. You are very strong. I hope you find the right combination soon. Thank you again
Welcome to a very supportive group. Make sure you check out the tab on Face Pain Info. You will find additional information there as well. Never be concerned about asking any questions you may have, we are all here to try and help each other.
You may also be interested in information from TNA Facial Pain Network, where you can also order the book "Striking Back", if you would like to.
My best advice to you, make sure you have a doctor that is listening to you and keep in mind at all times that they WORK FOR YOU. If things don't go well with a doctor, if they don't listen, if they don't answer your questions, etc., move on. Do what is in YOUR best interest.
Cathy In MD
Thank you, I’ll have to check that tab out. I get intimidated around doctors, I always get a “hmm that’s strange” something along those lines. I’m not good at describing my symptoms, it’s never exactly the same. I just can’t articulate the kind of pain it is, because unless it feels exactly like what I’m saying I don’t want to say it and I don’t know what lightning, or fire or being stabbed exactly feels like. I don’t want to say something wrong and get a wrong diagnosis. I question if I TN or its some exposed nerve in a cavity and by some random dumb luck it went away when they gave me the medicine. Then now I got another and its not working this time.
Missymutt, I've been there, done that! I would have attacks and be given something and they would stop and I would think, wow, I'm cured of whatever....(the illness of the day was). Years later, when my attacks became more frequent and lasted longer, I learned sometimes they just had to "run their course", so to speak. Then, mine became a more constant part of my life.
As for being intimidated by doctor's, don't be. They are humans that went to school for a long time. YOU know your body better than anyone else does. If your pain continues, trust me, you will learn to know how to describe your pain. I'm sure you do just fine now. You may not actually know what it feels like to be hit by lightening or stabbed, but I am sure you have had the displeasure of being struck by a sharp object without expecting it. If so, imagine it being stronger. You have certainly felt the pain of burning on your skin, so imagine the burning sensation also going under your skin. No matter how you look at it, pain is subjective and we each feel it in our own way. If you suspect your diagnosis is wrong, get a second opinion. That's what I did. I actually did it to make sure it was confirmed by a second doctor, I was already convinced.
Hang in there and trust yourself! And remember, your doctor puts his pants on the same way you do :)
Cathy In MD
Missymutt said:
Thank you, I'll have to check that tab out. I get intimidated around doctors, I always get a "hmm that's strange" something along those lines. I'm not good at describing my symptoms, it's never exactly the same. I just can't articulate the kind of pain it is, because unless it feels exactly like what I'm saying I don't want to say it and I don't know what lightning, or fire or being stabbed exactly feels like. I don't want to say something wrong and get a wrong diagnosis. I question if I TN or its some exposed nerve in a cavity and by some random dumb luck it went away when they gave me the medicine. Then now I got another and its not working this time.
It seems like no doctor can agree with each other or they have no clue. I don’t think it’s wrong I just over think things and doubt myself a lot. I started this process with migraines, virtigo, a gut feeling that something else is wrong and determination I was going to figure it all out. Now, you can add the TN along with this numbness in my limbs, more questions than answers and I’m already starting to feel defeated. I’m not giving up just taking a break I guess is the best way to describe it. I know I’ll need to go back to all the specialists and tests again and to stand up for myself.
Thank you, both again for replying and good luck. I’ll be using this site a lot more now that I know there is caring people on here willing to give support and advice.
Missy,
I don't recall you mentioning numbness in your limbs before in any of your postings. This could be very significant and I hope you have brought it to the attention of your neurologist. It might help to make a list of things you will need to mention, questions you have, etc., before each appointment. As an example, I would ask him why he had written down TN in the first place and what it could mean for you. But again, numbness in your limbs is very important to discuss with your doctor.
Keep Smiling :)
Cathy In MD
I tried mentioning it but all he wanted to talk about was my migraines it took 6 months to get in in the beginning, then 6 months after for the migraine meds to kick in and be recorded. That appointment got cancelled by them, I over reacted and decided I’m not waiting another 6 months fir the rescheduled one. I don’t know if it would’ve been that long, but it felt like it. I was honestly only diagnosed by a ER doctor, who thought it sounded right and the gabipentin working. My GP agreed after and upped the meds. I got the attack a couple months before my first appointment and figured I should bring it up then. The ER doctor was like freaking out telling me I need to see one and he diddn’t know if I could wait that long. I need to find a different neurologist. Or find my voice, I had my mom there for “support” which diddn’t help at all. I’m also going to talk to my doctor about anxiety meds when I go this week.
Missymutt said:
Thank you, I'll have to check that tab out. I get intimidated around doctors, I always get a "hmm that's strange" something along those lines. I'm not good at describing my symptoms, it's never exactly the same. I just can't articulate the kind of pain it is, because unless it feels exactly like what I'm saying I don't want to say it and I don't know what lightning, or fire or being stabbed exactly feels like. I don't want to say something wrong and get a wrong diagnosis. I question if I TN or its some exposed nerve in a cavity and by some random dumb luck it went away when they gave me the medicine. Then now I got another and its not working this time.I was wrongly diagnosed for yrs. Finally I had a name for my condition. I had never heard of such a thing. Now however I am being bounced back and forth to different Drs. My family Dr didn't even know about this. I had to tell her what it was. I am having a lot of pain and can't sleep.. so I go to my Dr who says I need to see mental health to get antidepressants or pain or sleep meds. Still I have nothing that helps. I have been on Trileptal and then changed to Tegretol. The side affects are too mch for me. I am thinking of changing Drs. but I am afraid it will mess up the progress (progress ha) of my treatment so far. Seeing a neurosurgeon on Wed but I do expect her to do nothing like everyone else has. There are meds out there but I am finding that my Dr just doesn't want to gv me anything. So today I start looking for another Dr. What do you have to do to get them to gv you something to help you sleep or to deal w the pain when it is so so bad? I guess since my Drs don't know or won't do a thing I will just go to er. IT is the only way to get relief!
Missy,
Seeing a neurosurgeon so early in the process seems scary but may provide some answers. However, don't allow yourself to be talked into any unneeded surgery and make sure you get a second opinion if surgery is suggested. If you fail to get answers there, I would like to suggest a possible other solution. My actual diagnosis came from a Pain Specialist, it was then confirmed by a Neurologist. I admit though that the neuro is not as informed as I would like him to be and I am educating him.
Do your research and find someone that may have a background treating TN. Make sure you have any scans you have had done with you. I also always ask that the radiologist send me copies of the reports, I don't pretend to understand them but at least I have a background of my records when I move on to another doctor if needed. Keep in mind, don't read them and become alarmed by words you don't understand.
I am still very concerned about the numbness in your limbs and would be asking if they found any lesions on your brain scans. This is not to alarm you but to make sure you are on the right path. Neurology is so specific that I think it takes a lot of the patient's own research to find the way.
BTW - TN is rarely treated with narcotics, except for some people, I think for those that are more like to suffer from TN due to dental surgery (I'm not sure about that). Many people use a combination of drugs that may take time to figure out. Anti-depressants are often used because they can help for some and quite frankly, people in pain are DEPRESSED. It could take time to find the right combination.
Also, heat compresses can be very helpful when your pain flares up. I find that propping myself up more can help me sleep better some nights. Try different things, see what works for you. Also try and figure out what might set off your pain and avoid it whenever possible.
You are driving your own bus dear, you have to get informed. It can be grueling but first you need to find out if you are on the right road.
You are in my thoughts,
Cathy In MD
Cathy,
It’s not me seeing a neurosurgeon it’s moose. His post got jumbled with mine in a reply.
Umm my Mri last fall a month after the TN showed up came back clear I do have a dvd of the scan. The numbness is getting worse it was just when I was an awkward position they’d go numb faster than they ever did before. Now I can be laying flat and feel it in my toes but I do take topiramate for my migraines and that’s a side affect. Also I my pinky and ring finger up on my arms will will. My whole leg from my knee down if I’m not careful.
Sorry for my confusion, I get a little mixed up at times. A result of my own medical conditions and my own meds, LOL.
Missymutt said:
Cathy,
It's not me seeing a neurosurgeon it's moose. His post got jumbled with mine in a reply.
Umm my Mri last fall a month after the TN showed up came back clear I do have a dvd of the scan. The numbness is getting worse it was just when I was an awkward position they'd go numb faster than they ever did before. Now I can be laying flat and feel it in my toes but I do take topiramate for my migraines and that's a side affect. Also I my pinky and ring finger up on my arms will will. My whole leg from my knee down if I'm not careful.
It’s no problem at all, I have my days where I get mixed up too. From lack of sleep like today or my migraines can actually mess me up pretty good.
I was told by one of my docs that Gabipentin can cause swelling and numbness in my legs, so I would look into that there is also this handy tool i found online so that my mom could calm down about all the different meds I was taking at once. http://www.rxlist.com/drug-interaction-checker.htm it lets you check if any drugs you are taking could interact with each other. I do think the limb tingling should be talked about with a doctor, but first you have to have a doc that will listen, I'm hoping you can find a good one soon.
As for explaining pain, I made a visual chart, you might want to look into doing something similar. I took a photo of my face, and I put it in Microsoft paint and I drew on the areas that hurt, different colors for different pains, I will attach it if I can figure out how. I plan on taking it to my new doc next month, and it has helped my friends and family understand me better.
Ice packs behind my ear on the bad side is the only thing that has really helped me, beyond medication. Some people find heat works, most can do hot or cold, and the other makes them worse.
77-TNface.jpg (44.7 KB)
I Missymutt, I have had TN for going on 10 years now. I have had MVD etc. I have experienced just about everything you have mentioned except for the numbness. Have you been checked for MS which is multiple sclerosis. It is a disease that the patients will also develop TN as well as ATN. I pray that is not your case but might be a question you might ask your neurologist. These problems might not be diagnosed by an MRI are CT scan. Also, a friend of mine who has MS has never developed TN but as migraines and is aware that in the future she could develop TN because of her MS. Sometimes we have to ask the DR. if they could test you for these things ourselves. I know that they do not like for you diagnose yourself, but, it does not hurt to bring these things to there attention, they make mistakes to and sometimes, just might not be thinking in those lines. Good Luck, Linda
I’ll try that link, the last ones you suggested were very helpful. I’ll bring up the numbness when I find a doctor.
I know about the ms connection and that scares me, but I’ve also looked into Lyme disease because I’m 99% sure I was bite a few years back, I had a bullseye like rash and spend a lot of time in an area where ticks are common. I don’t know of a connection of Lyme with TN though so I don’t know if it’s be me just being that unlucky.
I thought MS was diagnosed by liesions seen on an MRI. I’ve got a lot to discus and look into. Thank you everyone for your concern.
Yes Missy, that would be the start of the diagnosis. One of my daughter's has MS. She has multiple lesions on her brain. The first one came on when she was about 15, so she could not be diagnosed. She didn't have her second attack until 12 years later. Then they found the old lesion and a new one. That was why I had asked you if they had seen any lesions. After they saw that she had multiple lesions, they had to do a spinal tap. With that you have to have multiple bands, whose name I cannot think of at the moment. She had 13. She was officially diagnosed at that time. I think you can safely rule out MS. Perhaps the numbness is a result of your meds. I know I feel better for you :)
Missymutt said:
I thought MS was diagnosed by liesions seen on an MRI. I've got a lot to discus and look into. Thank you everyone for your concern.
Thanks, I haven’t really thought about it since I had the MRI. That put my initial panic to rest. I’m sorry to hear about your daughter.