Just as a basis for my Atypical TN, I am on 100 mg Lyrica (twice per day), 10 mg doxepin (to help me sleep) and .25 mg Xanax (t0 help with anxiety created by pain). Here are my questions: Why has my blood pressure gone up since I started with this disorder in Jan 2011? I have had low blood pressure all my life and now when I go to the doctor, my blood pressure is consistently high - 135 over 95. Why am I experiencing more severe breakout pains on the Lyrica? I have less constant pain - just getting these strong, very painful pains intermittently during the day. Does coffee make you experience breakout pains? Why do I have a weird impression on the right side of my forehead? I have had this crazy wrinkle/line since this started and it never goes away. I also have swelling on the right side of my face - which is where my pain started and still is. My neurosurgeon said that my pain is so Atypical that I am not a good candidate for surgery. My MRI showed a distinct blood vessel on top of the trigeminal nerve. Since this was so definitive, why are my pains so Atypical? I have 2 doctors right now, one for myofacial pain and the neurosurgeon. Why don't doctors know more about this disorder? Is it that rare, or just not alot of research in this area? I am one of those anal/retentive people that has to understand every aspect of this disorder and I just keep looking and asking for answers. My doctors give me the impression that they don't want to treat this. My pain doc said not to reschedule an appt for 6 months after I saw him this week. (Maybe I'm being a bit paranoid on this, but seems that if they cannot fix my problem, they don't want to treat it) It is hard, very hard. Hopefully, all of you can help me.
A few thoughts, but only from my research, not any medical schooling.....
TN afflicts about 5 in 100,000. ATN is the rarer form of the condition, though I could not find stats on this. Because the condition is so rare, doesn't seem to be much interest in finding the cause or a treatment for the disease. Most research for medication come from the drug companies themselves. From a purely economic standpoint, there are not enough of us to make Pziser and the others any money.
Because we live in so much stress that another attack is happening, the blood pressure goes up. When we are in pain, the blood pressure goes up. I have ALWAYS had very low blood pressure, like 95/72. It is nowhere near that right now.
I personally can't chew as it triggers my pain. However, coffee (the heat) also has set me off a few times as well.
I have also read, though don't know how accurate it is, Lyrica is not good for consistently bringing this condition under control. Typically, it seems, the drug is prescribed in conjunction with a more traditional drug.
My other observation after talking to a neurology center, is that they will see me, recommend a course of treatment, and then send me back to my regular doctor who will take over my general care. When doctor has a question, he can all the neuro or pain specialist.
Hello! I feel like your story sounds so similar to mine. My pain is also considered Atypical. I experience 'typical' pain, ie: electrical shock/zinging pain etc but I have lots of aching, I also get swelling at the org. location of my pain (in my jaw, back teeth), crawling pain, numbness, etc. I started with Tegreol which helped but about 2 month ago I got a crazy outbreak of burning and swelling pain, so my neurologist added Lyrica. I am now on 300mg of Lyrica a day and weaning off of my 500mg of Tegretol to see what happens.
I don't think I have noticed high blood pressure, but I do notice that when I lay down to go to bed, I feel like my heart is racing every night until I fall asleep. I haven't noticed anymore swelling on my face since being on Lyrica. I use to ice my face multiple times a day before. I drink about 2 cups of coffee a day ... I prob shouldn't because I'm anxious all the time and I have read that caffeine doesn't help TN pain. But it's winter and it's cold and I'm tired all the time anyway from Tegretol so I'm choose coffee and I guess you just have to pick your battles :)
I also have a neurologist and neurosurgeon and they too can see in my MRI where a blood vessel is interacting with my trigeminal nerve BUT I'm also considered a slam dunk 100% cure for surgery either, do to the fact that I have more atypical pain. My neurologist said that the MVD surgery fixes the zinging typical nerve pain. He doesn't have an answer for my other pain, however he does seem to think that my atypical pain could very well secondary pains as a result of the initial typical pain (like my face is going nuts so then burning, aching is a result of the initial craziness).
My neurologist is the same — I got every 3 mo. at least but I find it so annoying that the solutions have been, here try this drug, see you in a few months. I'm sick and tired of that answer so I'm moving on and that's why I'm investigating MVD. My pain is under control for the most part, however I want this fixed and to get of medication. I'm young and ready to move on with my life and start a family, which I cannot do in my current drugged state. SO, my plan is to wean of Tegretol, see how I do on Lyrica alone until the end of Jan. I'm keeping a very detailed pain diary so I can better track what I'm feeling/when/where and at the end of Jan. At that point I'm planning off of weaning off of Lyrica and seeing what happens, drug free all together. If I'm experience more electrical shock pain (since I don't feel a lot of that now because I'm drugged) ... then I'm going back to my neurosurgeon and prob make a surgery decision. Mine seems to think that I'm a 75% good candidate (he does not want me to dot try any of the other options like gamma knife and such because all of those options partially damage the nerve) ...
Anyhow, sorry for rambling and over sharing ... I'm also extremely anal retentive and have researched the hell out of TN and my pain and have tried every other thing I can do besides medical intervention. I find the whole 'try this drug and we'll see you in awhile' a bunch of BS. I think the idea of my atypical pain to be secondary pain to make pretty good sense. My neurosurgeon does the MVD surgery several times a mo. and says that he has seen cases exactly like mine over and over and MVD is successful for them — but that pain wise and nerves and such, they just don't have answers for everything.
Alrighty, there's my story ... Cheers, Jessica
Lisa has just about all of the story spot-on, if I may say so. I'll add a few things around the edges of her observations, hoping that she doesn't mind. I'm not "correcting" here, because she's already given you a good start.
1. Incidence of TN pain is higher than once believed and reported in the Rochester studies of the late 1980s. Two excellent large-population studies in Holland and the UK published results in the range of 12-28 new cases per hundred thousand per year (the studies are referenced in our Face Pain Info article). But that's still pretty rare. And I have no doubt that as Lisa has indicated, the small market is definitely a factor in decisions by Big Pharma to put its research resources elsewhere. That said, there are a few promising developments in research, including one fascinating study in the UK that may have isolated a gene which controls chronic neuropathic pain but does not directly affect acute reactive pain that we all need as an early warning system in the natural human environment.
2. While 135/95 might be considered "borderline hypertension" by some doctors, it's still not in the range that most doctors treat with medication. The increase to that level bears monitoring, but probably wouldn't be considered dangerous in itself by many doctors.
3. Caffiene in coffee will raise your blood pressure further, on top of whatever effects pain itself has on you. Higher blood pressure frequently seems to cause increases in breakthrough pain.
4. Lyrica is indeed used more often in fibromyalgia than in trigeminal nerve pain, and it is not generally considered the first line of exploration in medication. Tegretol, Trileptal, and Neurontin are more commonly prescribed, followed by or combined with one of the tricyclic anti-depressant drugs for Atypical TN. There are several other drugs that may be added in to promote the effects of the primary anti-convulsant drugs.
5. A "physical impression" on the forehead and/or swelling in the face might not be directly related to facial neuropathic or neuralgia pain as such. Your neurologist can separately explore these issues, though I doubt most GP doctors will have the training or background to do so.
6. Many patients have both typical and atypical trigeminal neuropathic pain. Removal of a compressing blood vessel during MVD will tend to aid the typical components (volleys of lightning strike stabs) much more effectively than the atypical components (deep achy, burning, boring, searing 24/7 pain). Probability of complete pain control by MVD is considerably lower for ATN patients, and many surgeons outright recommend against the destructive procedures such as Rhizotomy or Gamma Knife, for anyone whose pain is dominated by ATN symptoms.
Regards, Red
Thank God for all of you. Red, you are such a wonderful source of information and knowledge! Just as an FYI, I tried neurontin for about 6 weeks and it threw me into such a severe depression, state of confusion and an almost complete inability to concentrate, that I had to go off it immediately. I simply could not function on it. That is when my neuro put me on the Lyrica. Are you kind of saying that the Lyrica probably won't get my pain level down to 3 or 4 over the long run? I work in an extremely stressful job, and after 10 hours of work (at least 3 days per week), I am in terrible pain each night. I thought it might be that my blood pressure rises during the course of a work day and therefore, more pain by the end of the day. One doctor told me that neurontin had the least side effects. Since I can't tolerate the neurontin, what else can I try? My doctors seem to think I have pretty much exhausted anticonfulsant choices. Have I? I could go to 3 of the Lyrica per day, but since that is not generally effective for ATN, would it be a waste of time and money? Still confused, I guess. I'm actually hoping this fat soluble B1 will help in conjunction with the Lyrica.
If you were thrown into a depressive state, I wonder why they did not put you on a low level antidepressent? Neurontin is actually a mood stablizer.... so if you were in a depressive state, it means you probably do not have mood disorder --- so, I guess that is good news out of all of it! There are other drugs... Tegretol, and another one that starts with T. Then the are the trycilic antidepressants that can be used, I think in conjunction WITH the Lyrica.
I had the opposite effect of the Neurontin... I had no side effects whatsover that were bad for me in the long run. I feel "up" and good... Can't sleep and don't want to eat, but I can work with those two.
Had to smile over Lisa's input (for which my appreciation!) Not in pain -- just loopy and slim... Not a bad trade, I'd say.
McGinnis, given your reaction to Neurontin, I'd say it is time to discuss tricyclic antidepressant meds with your medical care provider. However be aware: patient response to EACH medication may be highly individual. And B1 does not have a record of successful outcomes against neuropathic pain or ATN.
Talk with a licensed doctor about your options, please...
Regards and best,
Red
Red - since I am already on doxepin, which I believe is a tricyclic antidepressant, what other tricyclic antideprssants should I ask about? If I just take one doxepin, I sleep okay. If I take 2 (neurologist recommended 2), I wake up every couple of hours because it causes very vivid dreams. So, I just take the one at bedtime right now.
There is an article from Brewer Science Library on the B1 use for stopping and reversing Neuropathy. The article points out that benfotiamine has been used in Germany for 10 yrs to treat diabetic neuropathy, as well as sciatica and other nerve related problems. I agree that there is no evidence or research supporting the use of B1 to treat TN, but figured I had nothing to lose by trying it. I only take the minimum dosage.
Thank you for reponding to my questions today. I have an appt with my neurosurgeon in a couple of weeks, so trying to figure out what I should ask about or try next.
Lisa (iamrite) said:
If you were thrown into a depressive state, I wonder why they did not put you on a low level antidepressent? Neurontin is actually a mood stablizer.... so if you were in a depressive state, it means you probably do not have mood disorder --- so, I guess that is good news out of all of it! There are other drugs... Tegretol, and another one that starts with T. Then the are the trycilic antidepressants that can be used, I think in conjunction WITH the Lyrica.
I had the opposite effect of the Neurontin... I had no side effects whatsover that were bad for me in the long run. I feel "up" and good... Can't sleep and don't want to eat, but I can work with those two.
Lisa,
It is amazing to me the different reactions that people have to the same drugs!!! I felt that my doctor did not monitor my use of neurontin close enough. I started on one 100mg pill for a week, then went to 2. I thought that I was doing so well, and it was working on the pain, so I asked if I could go to 3. About 2 weeks into taking the 3, I started crying all the time. I could not handle any kind of stress at all. I just cryed and cryed all the time. Everything made me cry - even dumb commercials! I finally realized that it was the neurontin. I was taking a tricyclic also (doxepin) at the same time, but it had no effect on the depression. I am usually a really upbeat person, very articulate, and a very high IQ. I became totally scatter brained, completely out of touch, fuzzy, and forgetful on the neurontin. I would give anything to have the anticonvulsants work for me. To be out of pain, would be a dream come true. As far as eating goes, I have been "skinny" all my life and any side effects from drugs that make me want to eat, I welcome! However, on the neurontin, I did not want to eat either. I sleep because I take the doxepin and the Xanax at bedtime. Thanks for the input. Are you on high doses of neurontin?
I am at 1800 mg's of neurotin right now and for the most part, it is controlling it. I have break through pain about once a week, but it is controllable (usually) with some narcotics. I still have low level sensitivity and numbness in my face. Once in awhile there will be pressure in certain parts of my face. But the pain daily is bearable. Nothing that stops me from living life like before.
I will say that I sit and wait for the other shoe to drop. Before I got the TN diagnosis, the diagnosis was frequent sinus infections and TMJ. I would have a few really painful weeks, then nothing for a few weeks, and the cycle would continue. Strangely what hurt the worst during those times were my ear. I kept going to the doctor thinking I had an ear infection. Anyway, needless to say, I am not convinced I am out of this yet...... Though going from daily pain to once a week, that I can live with.
D McGinnis,
I agree with Red that you should consider talking to your doctor about trying a tricyclic antidepressant. I know you're on Doxepin, but it hasn't been proven (or dis-proven) to work as well as some of the others. Both Amitriptyline and Nortiptyline seem to be the most widely used for the 24/7 aching pain.
I'm sure I sound like a broken record to those who keep seeing me write this -- but I really suggest you talk to your doctor about taking Amitriptyline. I have 24/7 pain in my teeth, and I tried several meds and nothing worked. I was in unbearable pain and was in a major crisis. But once I reached a therapeutic dose on the Amitriptyline, my pain levels went down and I started getting days that were only a 3-4, compared to the 24/7 level 8 pain I had been enduring.
I'm a huge advocate of using Amitriptyline for the 24/7 aching pain. If anyone ever wants to speak about this med in more detail, please message me. And always talk to your doctor, I'm just here to share my experience.
You are not a broken record Crystal. Nortriptyline and Amitriptyline are worth looking into for pain control of ATN. They can work for many people. It may be worth asking one's doctor about!! :)
Wow! It’s been interesting reading this thread. I have bilateral TN that started on the right with 24/7 boring pain. MVD a year & half ago, pain reduced about 80%. Suffered through all the the drugs settling with neurontin now @ 3600 with the occasional narcotic for the breakthrough pain. I have had some great doctors who had no idea how to treat this mysterious disorder. Now that I’ve had he experience I feel I could teach any doctor the ins & outs of TN. At the same time (with the left ramping up) I feel like I could be done with it completely anytime an attack comes on. And it’s often. So we all can relate to the frustrations and fortunately we have this site & Red to turn to.
Min C said:
You are not a broken record Crystal. Nortriptyline and Amitriptyline are worth looking into for pain control of ATN. They can work for many people. It may be worth asking one’s doctor about!!
I can also vouch for Amitriptyline working for me. After a TN attack I was unable to wear sunglasses as my face ached from ear to eye. The glasses felt so heavy on my face and made my face ache. Also I found sleep difficult as I was unable to lay on one side as I had a boring pain in my temple. If I tried to sleep on the other side then my face still felt squashed. I started on just 10mgs of Amitrityline which did nothing, i increased to 20mgs and it did the trick. I can now sleep and wear glasses without any problem. Glasses still feel heavier then they did but this i can live with . ( I think i have neuropathy rather then type 2).
How did you get over the incredible sleepiness of Amitriptyline? I was prescribed this once years ago for insomnia. The next day was like one long hangover sequence... I was on it for 3 weeks and finally begged to be switched to something else. So it scares me that neurotin is not doing anything, but that I am having a break from the pain that I have had for months... that it is repeating some pattern. and then I would need to drop to the Amitriptyline.... As an uninsured person I would not be able to afford Lyrica, anyway.
I also belief that I am Type II..... I was told I had TN, but that was in an ER. My GP confirmed but said I should see a neuro to determine further..... so here I sit. But the more I read the more I believe I have type 2. yes, I get the electrical current feeling in my teeth.... which is HORRIBLE. But to me, the more painful part is the jaw/ear/cheek, gum pain that feels like my face is being repeatedly crushed. To add insult to injury, then the current comes in and makes it feel like it is exploding out of my tooth. During one episode, I actually thought my tooth had blown apart..... Fun times. Not.
A thought for Sabrina: if anyone should be credited for the activities and forums of Living With TN, it's not me. It's Ben and Scott. I appreciate your acknowledgment, Hon. But this place really is NOT "about me". It's about you and others like you who labor in pain. I contribute what I can from 16 years of experience as the spouse of a pain patient, and over 40 years of professional work as a military officer and intelligence analyst, operations researcher, training developer, teacher, webmaster and network manager. But believe me please, when I acknowledge that I often feel inadequate to help or lend comfort. There is enormous value in the contributions and support of those here who are doing this journey of pain for themselves "from the inside". I am often humbled by your bravery and grace.
Go in Peace and Power
Red
I too have Atypical and the doctors have pretty much threw up thier hands. I did start on new meds the generic for Keppra. So far it has seemed to help, but they all seemed to help at first then effects wore off and pain returned. I wish the doctors could experience our pain for one day, then they might want to help us more. My doctor has yet to give me anything for my nerves and depression and I don't understand why. I am going to a different doctor to get 2nd opinion. judith
A second opinion is always appropriate, Judith. By "for your nerves", may I interpret that you deal with anxiety at times? If you do, then you might find that one of the anti-anxiety agents (Xanax?) turns out to promote the effectiveness of your primary pain med. Keppra is an anti-seizure agent used off-label for pain (like Tegretol and others). I don't hear it mentioned very often as a first drug of choice for either TN or ATN. It can also worsen depression in some people, as can the other anti-convulsants. See http://www.drugs.com.
Regards, Red
Lisa, I am taking large amounts of steroids for a different illness, which means I only sleep for 4 hours then wake up wide awake and buzzing to go. The Amitriptyline helped me have a couple more hours sleep, but once awake I didnt feel sleepy. The first couple of days i was laying on the sofa feeling drowsy, but I became ok after that. My greatest benefit for being on them, I take them an hour before bed, is they help me drop off without feeling the sensations of my face on the pillow.