Hi all.
Re the comments on statins and remission: I took statins for some years before becoming sensitive to them, and taking several years out. It was during those years (while my cholesterol was really high) that I started with the TN - so the opposite experience, I suppose.
My TN (1 followed by 2) went into remission for about a year (just painkillers, which I take for other things anyway), then flared up last summer, so I started on carbamazepine. All quiet until the last few days, when I’ve had some very mild twinges and tingles, so I too am wondering if it’s all about to blow up…
When I was diagnosed, the MRI revealed a physiological reason for the TN (which was 'ignited' during dental work). The neuraligist recommended even after the TN subsided that I continue to take gabapentin every day. He said he had seen paitents who stop taking the med's, and the TN comes back with a vengance. So it has been two years next month since the TN subsided and I continue to take a low dose of gabapentin every day. If I 'think' I feel a 'twinge' of TN, I increase the night time dose. That's all I know at the time.
Mine slowly built up over time...but then it hit full force and I felt like I had been hit by a truck...It started out with a little stab here and there until one morning i woke up and couldn't even brush my hair or wash my face without being in tears.
I'm not sure there is remission. I have pain EVERY day, there are days when the pain might be a 4 instead of an 8 - 10 and that is what I would call remission for me. If you are pain free jus PRAISE JESUS and ENJOY that time. I live in New England and we have had a cold winter which seems to keep my pain at a higher level. CAN'T WAIT FOR SPRING.
I totally relate to what you wrote John. When I have level 4 pain days, I consider those my remission days. I'm in New England too, yes - cold winter, our yard is still like an ice rink. I got "hit" in the face last week coming out of a store by a gust of icy wind, the jolt of pain from it was so ferocious I almost dropped to my knees right there in the parking lot. I was carrying groceries and had forgotten to wrap my scarf around my face. I agree with you, can't wait for spring! I would like to experience remission one day too ... so far no luck with that.
John said:
I'm not sure there is remission. I have pain EVERY day, there are days when the pain might be a 4 instead of an 8 - 10 and that is what I would call remission for me. If you are pain free jus PRAISE JESUS and ENJOY that time. I live in New England and we have had a cold winter which seems to keep my pain at a higher level. CAN'T WAIT FOR SPRING.
Great question catwoman - so many interesting responses from people! When people say it's progressive, does that mean that the pain gets worse over time or that it spreads so that more nerves are affected? Or both? I'd have to say yes to both but that's just my own experience.
I am in New England as well (Maine) and it has been one long, rough winter. I have a question about triggers though. I'm pretty new to all of this and cannot locate external triggers. For instance, I'm a skier and the wind/cold on my face doesn't bother me (yet) but talking or eating will. Does anyone have only inside the mouth triggers and only get pain in the teeth? Is this because it's just the start of things? I'm on a BIG learning curve. :)
hi Catwoman - I have atypical facial pain (inc. ears), and mine flares up and reduces without any notice or apparent reason. Fortunately it has, so far, in the year I've had it, never gone back to the original suicidal three months. Best wishes for yours. Dove.
I didn't look at remission like this, but I agree, I am never able to taper back meds. Everything the same then the long painful days/nights begin. Sometimes the meds will start working again without changes however I also become more aware of how much sleep I get, how much I'm talking and any additional stress that is going on. The pain returns rather slowly for me until I am at the 10 level...where I am now is 10+ so lots of changes in with new
meds and dosage of current meds.
Mary A. Fazio said:
I was always under the impression, that you are in remission when you have gone without medication and have not had any pain for at least 3 months. If you are on anti-seizure meds for a long time and then the pain starts breaking through, thats not remission, that's the medications not working anymore and the dose either has to be changed or more meds added, etc. This is just what happens to me.
I live in South Africa where it's very hot for the greatest part of the year, and my TN is ALWAYS worse in heat.
John said:
I'm not sure there is remission. I have pain EVERY day, there are days when the pain might be a 4 instead of an 8 - 10 and that is what I would call remission for me. If you are pain free jus PRAISE JESUS and ENJOY that time. I live in New England and we have had a cold winter which seems to keep my pain at a higher level. CAN'T WAIT FOR SPRING.
Mine slowly built up over time...but then it hit full force and I felt like I had been hit by a truck...It started out with a little stab here and there until one morning i woke up and couldn't even brush my hair or wash my face without being in tears.
Curious to know what amount of Neurontin you take daily. My TN has been off and on for the last two plus years and just went away again for the third time. I was taking 2400 mg/day and now am down to just two 300 mg tablets every morning and hoping like heck it doesn't come back. Do you know of any long term problems with taking Neurontin every day forever?
TK said:
When I was diagnosed, the MRI revealed a physiological reason for the TN (which was 'ignited' during dental work). The neuraligist recommended even after the TN subsided that I continue to take gabapentin every day. He said he had seen paitents who stop taking the med's, and the TN comes back with a vengance. So it has been two years next month since the TN subsided and I continue to take a low dose of gabapentin every day. If I 'think' I feel a 'twinge' of TN, I increase the night time dose. That's all I know at the time.
Yes, it often gets worse both in length and intensity and for some it can start in another branch of the affected nerve or even to the other side of the face in rarer cases. When you do have remissions they usually are of a shorter and shorter duration as well. It's progressive. I'm in my 40's and it's a big concern of mine but then I think of those whose illness start in child hood....
Obsidian said:
Great question catwoman - so many interesting responses from people! When people say it's progressive, does that mean that the pain gets worse over time or that it spreads so that more nerves are affected? Or both? I'd have to say yes to both but that's just my own experience.
Oh my dear, i'm sorry to say but it is definitely coming back.. It usually comes backs slowly and gradually gets worse,till you will know for sure,that it's back. I am so sorry.
that is what I don't get, cant the TN come back with a vengeance, as in, be worse than before, whether you stop meds during a remission or not??? TK, so you were told that there was something kind of off inside you and it was "ignited" during dental work and then the TN symptoms began for you. See , I have a very very hard time buying that. I know I have read in books that this can be the case and one can never 100% say that the dental work was the Cause of the TN. Why the heck not?? I KNOW mine was caused by dental work. I have numbness that has never gone away after I had that initial lidocaine shot during my upper molar extraction. I still have some numbness and I will have it for life. That numbness means I had an injury to the nerve. Now was this numbness" ignited" by the dental work??. Heck no. My oral surgeon did something wrong and now I have TN. I get so mad, when I talk to dentists or dr's and they imply well we don't know for sure if the molar extraction caused this. hell , yes we do, I want to scream. Please don't take this as an opposition to you TK, I just have a hard time believing there are all these humans out there walking around with these fragile trigeminal nerve branches that are just waiting to start official TN with the next normal cavity filling. I think its BS and a way the dentists can get off Scott free while continueing to injure more and more folks in the future and this way they don't have to worry about getting sued. Forgive me for going off the original topic of remissions....
Scared and angry girl, you have every right to be angry. Go for it and vent!! You have our backing. In fact, EVERYONE VENT! I promise I will listen and I will care.
I am just starting my third remission of type 1. I am going to be 74 years old in June. Each time I thought it was all over and I can't tell you why it came back. The remission was only for a few months, and I am just starting on my third year of having TN. I have cut back on my Neurontin to 600 mg/day from 2400 mg/day. Think I will stay on the 600 mg/day and see if maybe that keeps it from coming back this time. I also have done something interesting - and whether it is the reason for remission is a mystery. I read that our myelin sheath is made up of cholesterol and my cholesterol has been in the high range for most of my life. (above 200). So I have been on a statin drug to lower my cholesterol for many years. My experiment has been to stop the statin drug, and now that I have stopped statins, my TN is not bothering me anymore. It would be interesting if anyone else out there has ever had a similar experience, or has any information on how cholesterol maybe effects TN. It is also so interesting to me that no one in the medical field seems to know why remission happens with TN. Mayo Clinic has wanted to operate on me for the last year, and I have held off and plan on hoping to live the rest of my life without having to have the MVD operation. I have also worked hard to get back to optimum weight for my age and height, and wonder if maybe that has helped. I am taking a blood test next month at Mayo Clinic and it will be most interesting to see those results, especially as the blood test relates to not being on statins.
Golf Nut: If Mayo Clinic wants to do surgery - wow! I was there in Aug 2013 after a serious relapse to pain level 10++ (after a remission of 5 years where my pain was completely under control with only 30 mg of Cymbalta and 50 mg of Topamax per day). My local VA neurologist had increased my meds to 60 mg/day Cymbalta, 400 mg/day Topamax, and 100 mg/day Lamictal XR (all brand names medically necessary - and yes for TN brand names DO make a difference, to which I can testify, and for which my insurance co will pay), and I was getting no relief from 24 hour unremitting level 10++ pain. I could not even blink my eyes without triggering several minutes of stabbing pain, much less speak or eat or drink. Taking my meds in 4 doses a day was pure torture, but at least held hope that relief might eventually come as I titrated up to ever higher doses. But when my neurologist was fearful of higher doses, I went to Mayo - Rochester MN. As luck would have it, the meds finally started kicking in the day before I arrived at Mayo, but still with breakthrough pain. The Mayo docs were very candid about the very real and serious risks of all the available surgical, invasive, non-pharma options and advised not taking them until all possible pharma options had been tried. And the suggestion of eliminating all CNS stimulants such as caffeine was what ultimately eliminated the breakthrough pain - immediately. Common sense idea that nobody had ever before suggested and that I am embarrassed I had not considered before.
Now as to your question about statins. I have very high cholesterol (untreated - above 300, but that apparently won’t be the death of me, since I was diagnosed with stage IVb pancreatic cancer in Dec 2013). I was on statins when my TN first reared its evil head in Aug 2005, in a most dramatic way. Eventually brought under control with 1200 mg Tegretol taken 300 mg every 6 hours around the clock. After about 2 years I was gradually able to reduce that amount. Coincidentally I began to take 30 mg/day of Cymbalta to treat chronic depression (Effexor had lost effectiveness). I noticed that I was no longer getting those heavy, dense feelings in the jaw and teeth that were effected by TN shortly before my dose of Tegretol was due so I began to stretch the time between doses out a bit to where the dose was very low. Then in spring 2008 some blood work came back suggesting I had developed leukopenia and the doctor told me to immediately quit taking Tegretol and have the blood work redone a week later. Fortunately the blood work returned to normal and during that week I had absolutely NO TN symptoms. Eventually I began taking 50 mg Topamax and the 30 mg Cymbalta + 50 mg Topamax combo kept me pain free until spring 2013 my when my TN bean to relapse, I believe due to the cumulative effect of a series of stressful family situations, and their impact on my normally very low blood pressure. In looking back at my medical records I see that prior to and at the time my TN first arose I was on high doses of Zocor, a statin drug. My prescription expired and my GP had moved away and I did not find another GP, so quit taking the Zocor; this was about a year before my TN went into remission. Later I acquired a new GP who prescribed 80 mg/day of Lipitor, which is a very large tablet. Prior to my TN relapse that began gradually in March 2013 I had been trying to take this Lipitor as prescribed (and I am usually a very conscientious, compliant patient) but just found myself unable to do so consistently. My body just would not allow me to do so - many days I found myself literally unable to swallow this tablet, despite being able to easily toss down all 3 of the pills in both my morning and evening doses of TN meds in a single gulp. So I find it entirely credible that there might be a connection to use of statins and a TN relapse.