I am back again, have had some trouble the pas 2 weeks, two weeks ago, after having a clean two weeks with no pain, my pain returned. I had been taking Tegretol extended release 100 mg 3x a day. One question I have is if I am taking this medication right, I know it is extended release but I am just going by the directions on the bottle, is this normal?? It worked great for about two weeks, then I started feeling break through pain. Another question, my pain is not in my face at all, however I do experience some numbness in cheek from time to time. My pain is solely in top left portion of my head. It is a constant feeling of a pressure/burning, could this be occipital neuralgia instead of TN? I have had an occipital nerve block but it did not relieve symptoms. However, the neurologist that I was seeing then made me suspect to whether or not she did it right because my scalp did not become numb whatsoever and that usually happens. Either way, the pain I am in now is very disheartening and I just wish this pain on the top of my head would go away. I am thinking about asking my neurologist next week about starting a triglyceride antidepressant, as I think I have either occipital neuralgia or atypical trigeminal neuralgia and have read on here where people have had success with these type of drugs. Like I said the tegretol worked great for two weeks but now just seems like I am taking skittle. Need help and insight being 22 trying to sift through this disease or whatever it is I have is tough and very discouraging. My last question, since I have just figured out how to post into the type 2 TN portion, does this dull burning pain in the top left portion of my head sound like a symptom of this, or does the trigeminal nerve even have nerve endings that run that far up into the scalp? Just looking for help.
hillsdale15-
First, I’m sorry for anyone who has to struggle with this pain. I can only relay information I have learned related to my experience.
Unless the pain is near the back of your head, it is not the occipital nerve. Different parts of the “top” of the head are innervated by various nerves. There are several nerves that innervate the face and its parts, but the trigeminal nerve is the largest. Every person’s experience is different, so two people with similar symptoms can have very different responses to meds and therapy. Having said that, Tegretol tends to be less effective for constant, burning type pain. Many people with constant, burning pain have had some success with the tricyclic antidepressants. They helped me, especially when taken in conjunction with Lyrica (pregabalin). The other treatment that really helped me (at least for a while) was acupuncture. It helped me survive the time while I was seeking a diagnosis and trying different med combos.
I wish you the best in finding relief.
mrl
All parts of my head crushing pain sharp pain feeling like i had gotten beat in the head with a bat as well as sharp pain behind my eyes,temples had crushing pain. Burning in all of my face, etc. I tried the anti sez meds they actually made me feel worse so i tried a anti-trycylic anti depressant nortriptyline which was my saving grace i take 75 mg a day hope this helps. Feel free to friend and message
I would observe that Tegretol extended release 100 mg 3x a day is a very minimal dose. You may need to be titrated up, acclimating to gradually higher doses over a period of perhaps a month. That said, the previous note on Amitriptyline is appropriate -- either as a primary medication of in combination with Tegretol. Be advised by your neurologist. I can also confirm that spiky or burning regionalized pain in front of the mid-line of the skull (a line passing just behind the ear) is certainly trigeminal in origin.
Regards, Red
hillsdale I'm always sad to hear of others pain. Let's hope you get through this fast. I'm in the northeast and the barometric pressures affect me. I'm also on Tegretol. I actually take the extended release 5, 100's every day. This was increased due to having an outbreak two weeks ago. I also take gabapenton. As the other poster said, each of us is different with different types of agony and we all respond differently to each drug.
My doctor said to surround ourselves with specialists that can all work together to help solve our pain. I go to an acupuncturist, get massage, find myofacial release therapist, see neurologist, good sleep hygeine, etc.
I hope that you have found some relief in the last few days.
Red, you seem to have a lot of previous knowledge as I go through different threads on this website, with my pain being in the top left portion of my head, would this pain be coming from the ophthalmic portion of the nerve, or possibly from the Mandibular, because I know there is a portion of the mandibular nerve that runs under you ear and goes up into the head behind the ear. Just trying to pin point which portion of this nerve is giving me my trouble. Thanks.
Richard A. "Red" Lawhern said:
I would observe that Tegretol extended release 100 mg 3x a day is a very minimal dose. You may need to be titrated up, acclimating to gradually higher doses over a period of perhaps a month. That said, the previous note on Amitriptyline is appropriate -- either as a primary medication of in combination with Tegretol. Be advised by your neurologist. I can also confirm that spiky or burning regionalized pain in front of the mid-line of the skull (a line passing just behind the ear) is certainly trigeminal in origin.
Regards, Red
The forehead is served by the opthalmic branch of the trigeminal nerve (V1). I've supported face pain patients for about 19 years as a webmaster, author, and site moderator, so I've read a lot of medical literature.See http://en.wikipedia.org/wiki/Trigeminal_nerve
Regards, Red
I do hope the pain gets better in the future, I have just started to try Herbal Remedies, I am trying a herb mixture called DANS-C, have you heard of this herb mixture and know of anyone who have had success with herbs and this terrible disease?
Richard A. "Red" Lawhern said:
The forehead is served by the opthalmic branch of the trigeminal nerve (V1). I've supported face pain patients for about 19 years as a webmaster, author, and site moderator, so I've read a lot of medical literature.See http://en.wikipedia.org/wiki/Trigeminal_nerve
Regards, Red
Also, I am wondering if you have any knowledge of what seems to be a very under studied thing called supraorbital neuralgia, as I believe this is ultimately the nerve portion from where my pain is coming, as it says this nerve ranges from the forehead nearly to the back of the head. I am sorry for so many questions, my neurologist in Lebanon, TN just doesn't seem very educated in this kind of stuff and its tough for me to get referral's to neurologists in my area who seem to have some sort of back ground in dealing with these neuralgias.
The forehead is served by the opthalmic branch of the trigeminal nerve (V1). I've supported face pain patients for about 19 years as a webmaster, author, and site moderator, so I've read a lot of medical literature.See http://en.wikipedia.org/wiki/Trigeminal_nerve
Regards, Red
As I read medical literature, the supraorbital nerve can be regarded as a branch of V1 in the Trigeminal nerve. Whether TN may result solely from compressions of this branching of the nerve isn't as clear to me. The following full text article from Pub Med may add more details:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3304207/
You may need to find a better educated and experienced neurologist, Hillsdale. You might consider getting referral for a second opinion at Vanderbilt University Medical Center. Dr. Peter Konrad and Dr. Paul Moots have both been recommended by our members.
Regards, Red
In answer to one other question: no, I have never heard from anyone who could trace a long term cessation of pain to the use of herbal remedies. However, that answer needs to be qualified: particularly in the early stages, TN may be characterized by spontaneous remissions and reoccurrences of pain. This makes determining exact cause and effect difficult at times. Herbal remedies "probably" won't hurt you, but you should let your primary physician know you're using them because some will interact with meds. Likewise, be aware that the great bulk of the supplements industry is unregulated, and it is unusual for content of such supplements to be consistent or even accurately represented on the label.
The US TN Association in the past has advocated non-inflammatory diets, even going so far as to advertise a book on diet in their bookstore. Unfortunately for their case, the prominent TV personality doctor who wrote a forward for that book has recently admitted to outright fraud in some of the representations he has made in his own books and on the air.
Go in Peace and Power,
Red
I have discussed the use of this herb with my neurologist and also primary care doctor, they did say it could help and ultimately it could not help but with the medication I am on it will not hurt to try. I am beginning more and more to think that my pain is stemming from my supraorbital nerve, which ultimately does root from the trigeminal nerve, however since I have not had pain in the other two branches of the nerve at all, I am leaning towards believing this is some type of neuralgia strictly of the supraorbital nerve or to the occipital nerve itself. I do know that me trying to diagnose myself is ultimately silly, however, I am going to discuss this with my neurologist as I have another appointment this Wednesday, and I have also asked my primary physician to refer me to Dr. Peter Konrad, who was one of the doctors listed on the find a doctor tab on this website. One question I have though, is with him being a neurosurgeon, will his only medical advice be for me to have some type of surgery. Since I do not believe that surgery is a road I need to go down right now, as my pain is not intermediate, as it is almost constant. I do just believe my fear of living with the disease my entire life and being in constant never-ending pain is scarring me the most. However, I should trust that many people I see on here have found medication combinations that work great for them, and also some members of this website have ultimately stopped posting because their medications have helped them so much. I guess I just need to try and relax more, and have faith.
Richard A. "Red" Lawhern said:
In answer to one other question: no, I have never heard from anyone who could trace a long term cessation of pain to the use of herbal remedies. However, that answer needs to be qualified: particularly in the early stages, TN may be characterized by spontaneous remissions and reoccurrences of pain. This makes determining exact cause and effect difficult at times. Herbal remedies "probably" won't hurt you, but you should let your primary physician know you're using them because some will interact with meds. Likewise, be aware that the great bulk of the supplements industry is unregulated, and it is unusual for content of such supplements to be consistent or even accurately represented on the label.
The US TN Association in the past has advocated non-inflammatory diets, even going so far as to advertise a book on diet in their bookstore. Unfortunately for their case, the prominent TV personality doctor who wrote a forward for that book has recently admitted to outright fraud in some of the representations he has made in his own books and on the air.
Go in Peace and Power,
Red
Talk with your neurologist about V1 Trigeminal Neuralgia. I've talked with other patients who got relief from this distribution of pain by having an MVD done -- where the impacted nerve was down near the brain stem, not in the forehead reason at all. Sometimes a compression can be felt as sensation considerably down-stream from the compression site.
When you contact Konrad's office, you might also ask who they would recommend in neurology to see you first.
I think pain patients will consistently tell you that stress and tension generally aren't good for pain. But there is always an underlying physical process or cause, apart from the stress. I've talked with a LOT of people over the years who have found long-term management with various meds. My wife is one of them. She's had almost no side effects from 2700 mg/day of Neurontin since 1999,and gets reasonable pain management from the compound. Of late, however, she's facing dental work for pain localized to a tooth. So we're still not certain whether the TN is progressing.
Regards, Red