I have only been diagnosed with TN for about a month now and only had major pain for about two months. (Although I can think back over the last few months and have had some symptoms that I believe were early onset. I had numbness on that side of my face six months ago resulting in a subsequent hospital stay to test for stroke a few months back and tooth pain on that side off and on for months.) My TN is what most people on here call Atypical or Type II. My neurologist didn’t make the distinction. He just diagnosed me and scheduled an MRI, which I am going in for on Tuesday. My question now is, has any one that has ATN, developed Type I symptoms? I have been feeling sharper, stabbing type pains over the last couple of days. Usually I see/read descriptions of the pain as electric shock type pain and I can relate the pain to that in a way but it is more of a sharp twinge that sometime is quick and sometime feels like it won’t release for a minute and then I’m left with the same kind of pain I normally have afterward. Argh! Hard to describe…it is just new and different. I KNOW THAT! I am already on so many anticonvulsants that I am pretty sure that it would be a lot worse if I weren’t but still, these “shocks”, if that is what they are, are not pleasant. Has anyone else developed type I after having Type II? Can anyone give me a description of what their “shocks” feel like? Sorry for the long post. Lol
I have Type 1 and when mine was active the way I described it was as if the dentist was drilling on your teeth and hit the nerve. Now this was 30 yrs ago when dentist didnt use novacaine when doing fillings. Occasionally they would go too deep and hit a nerve. I would also get a vibration or twinge sensation sometimes prior to the severe pain starting. Pain was like an electric shock would last a second or two, stop, and them come back. If you have an artery pulsating on the nerve then the shocks kind of go in beat with your pulse. I would go weeks and sometimes months with this non stop pain. Unfortunately it is a progressive disease with more periods of pain and less of remission as time goes by.Number 1 is make sure you have a neurosurgeon/neurologist who has extensive experience with TN . That is crucial. Good luck and hope you get some answers soon...EDl
Hi Ana. I would think TN type 1 pain could develop after type 2 pain from what I have read I can see no reason why this would not be possible. Also many people describe their "shocks" differently. For me it is generally when I talk, eat or drink. Right now I have been pain free for about 3 weeks with 500 mg of Tegretol and 30mg of Cymbalta. this was after a period of 8 days of eating only smoothies, not talking and the worse- not being about to brush my teeth well. The pain was stabbing, sort of electrical feeling (a little bit like hit your funny bone). For me the pain was about a 9 (on a scale from 1 to 10) and occurred when ever the muscles in my right check moved. I could touch my face without pain however which surprised my Neurologist. I would highly recommend the book Striking Back (available US Amazon). My neurologist says she is absolutely sure it is TN but I keep hoping maybe it is some kind of infection that I could get rid of with antibiotics. I know that regular hydrocodaine did not help with the pain and the Tegretol did.but I am still not 100% convinced. I say this because I had weird episodes (on the right side of my face) leading up to this (several months ago) that were helped by antibiotics and steroids. Good luck with figuring out your symptoms. One test I might use on myself for your sharp TN type pains is taking regular aspirin, Tylenol or Advil. Generally this type of medications do not help TN pains. So if you are lucky and have relief you might be able to rule out TN. Read through the forum and see what other people are trying especially over the counter. You are going to have to become your own research scientist. Good luck and sending you the best. Tina
I developed TN 1 pains after javing the ATN pain for years.my TN1 pains felt like someone snapped a huge rubber band on my face. Triggers were anything, even a light breeze, touching my face. When I was on Tegretol I was close to being free of the shocks, but unfortunately I was allergic. If your pain responds to Tegretol, that is a pretty sure indication that you have TN.
Tina, I too have pain that is triggered by talking, eating, and brushing my teeth. I may need to try the smoothie thing. I have a nasty habit of just not eating at all. Actually, I have been practicing very poor hygiene on my TN side lately, so I risked it and waited about an hour after taking my meds last night and decided to floss. BIG. MISTAKE. I only did this because I am terrified of winding up in a dentist’s chair. That is a nightmare I do not want to endure anytime soon.
I have done the Tylenol, Advil, Aspirin, rotation thing and unfortunately Tylenol is the only one my poor stomach will even tolerate at all. I believe this is because I spent a lot of time downing NSAIDS during my desperate waiting period while I was being volleyed between doctors and dentists who didn’t take my pain seriously. I didn’t know what to do at the time other than to take Advil. I believe I damaged my stomach somehow. Now, every time I take it, I am sent straight to the porcelain throne. Excuse my bad taste. The bad thing is, I don’t think it helped at all for the pain. So I just kept taking more. I was desperate. Tylenol doesn’t help either.
I actually am almost through reading Strinking Back. I am so glad that I ordered it. How are you liking it?
Thanks for all of your wonderful advice.
Ana
ED- I’ve only seen my Neuro once so far and I really hope to learn more about him next time I see him. Can you recommend a way to find out about his experience with TN without offending him? Or do you think this is something I will just be able to tell?
you can go to same website and put in Atypical pain face or whatever - so many types of words for them and you can see what you are feeling
Its a little unsettling - I didn't look at pictures of real photos -- just the graphics of drawings --- then you can print and PROVE and show family and friends what the heck is in your poor head!
Ana, If you do the smoothie route to get food down without triggering pain get a trusty straw and a hand blender like the Cuisinart Hand Blender. This hand blender has been great.. no pulling out a large bulky blender that needs a bunch of cleaning. I notice with TN that little things make a big difference in my frustration level and happiness. I try to reduce all frustrating things when the pain starts. The only place I can find big straws in at some local fast food places. The big straws seem to trigger less pain and are good for thicker smoothies. I was surprised that going to smoothies was fairly easy adjustment. Losing the ability to brush my teeth has more traumatic... on the level of not being able to talk. Of course I am retired and had my husband speaking for me. And a handy pen and paper. It is funny the adjustments we can make to live life. To try to clean my teeth I resorted to taking a Qtip and putting on baby toothpaste (because you can swallow it without danger). Also I learned that I could stick out my tongue and brush my tongue without triggering the pain. This was a life saver. I also learned out to use mouthwash without spitting but taking the mouthwash into my mouth lightly oh so lightly swishing it and then pursing my lips around the straw and letting it expel the mouthwash. And those little paper thin breath mints were great in the morning. Oh boy! I hope you are not as bad as I was. But keep creative and trying things. You may not have to keep doing them once the pain recedes but it is great to know you have these techniques. If you are finding hard to do certain things mention them here and I am sure people have developed hundreds of tips and tricks. Good luck Ana! Tina
I wouldnt worry about offending him. If he gets offended or wont answer your questions he is probably not the surgeon you want working on you. I would have no hesitation in asking him how many MVD's he has done and any other questions that you have. Write down all of your questions so you dont forget anything. Good luck ..Ed
Ana Soosani said:
ED- I've only seen my Neuro once so far and I really hope to learn more about him next time I see him. Can you recommend a way to find out about his experience with TN without offending him? Or do you think this is something I will just be able to tell?
Cleo–. For the longest time I blamed everything on the root canal. But the hospital stay was long before the root canal. My whole left side of my face was numb. But no pain. And the numbness went a way. Then I had intermittent tooth pain attacks for a few months and then had a root canal two month ago and the real pain started and I have numbness now too along with it.
Tina-thanks for the Smoothie advice. I will definitely be looking into that blender and straw idea. I have been skipping meals and I am ashamed to say not just lunch or dinner but sometimes entire days of not eating. I don’t even drink sometimes. Then I force myself to drink an entire Gatorade in what I assume will help with dehydration or restore my electrolytes. I don’t know if this really helps at all. I just worry about my health. I have two small children and I can’t keep up with them as it is with these medications, let alone without eating or drinking properly and therefore depleting what little energy I have left. And my children are VERY ACTIVE!! Lol
P.S. just a side note: does anyone else think about things like how wonderful this forum is because our insides are screaming out in pain as we type or read these posts but we say things like lol. Just the things I think about… It takes our mind off of it for a few minutes at least.
Ana- I played a little game with myself when I was at my worst pain especially to force myself to drink water and at least drink an ensure or other type drink 3 times a day. I gave myself mental gold stars with each little positive act. So when I first got up if I pulled up the sheets to make my bed I got one gold star. Then as I put my night brace away another gold star. Turned off the bedroom fan another gold star. I told myself the only thing that I HAD TO DO was to drink a glass of water (or Gatorade) when I first got up, and for each meal and before bed. I mean I really believed that was the only thing (along with taking my medication). Because I should not take my medication without food that helped as well. Can you imagine having a wave of pleasure wash over me just because I had accomplish the task of drinking water. LOL I really felt my survival was at stake so I drank the water even though at some points it was painful. Also when drinking water through the straw once I started I would not stop until the glass was empty. This was only when the pain was really bad and I was afraid I would not drink anything. Ana you must drink water (or Gatorade)! You are scaring me if you don't. Could you be suffering from clinical depression? One of the good things about Cymbalta is that it helps with nerve pain and depression. This all could be very overwhelming for you - just recently diagnosed, young children, confusing symptoms. Keep reaching out to us Ana!!!!
Cleo–Do you think that I may still have some infection that the dentist missed? A missed canal? I would love it if that would explain away all of this. Unfortunately, I’m terrified of going to the dentist again. But of course I will do what I need to do. Have you heard of TN symptoms being caused by an abscess that goes untreated?
Tina–yes, I am definitely struggling with depression. It is really getting to me. I am trying to keep my head above water but it is really hard sometimes. I thank God for you guys because I haven’t had much support (mostly just blank stares) from my friends and family. It’s tough to deal with this THING and still function. I appreciate you all more than you will ever know.
Yes they did X-rays after the rc. The numbness I had in the hospital was like my whole entire left side of my face. It felt like I had been numbed up with novocaine. I expected to look in the mirror and see my face drooping or Bell’s Palsy. But it was just numb. No tingling, no crawling feeling, no sensation. The numbness I have now is coupled with the pain. It is in a specific spot. A line running from my eye brow to my eyelid down through the corner of my eye, and along the side of my nose, a little bit of my cheek as well. It feels like paresthesia I guess. Sometimes like crawling. No pins and needles. But yes, a definite, different type of numbness than before the root canal.