Well, Its been an interesting few months. I met with the ENT at Vanderbilt who is the "gatekeeper" for the Neurologists. She has been great to work with. We agreed that the drugs we had tried (Gabapentin & Amitriptyline) were not effective. They had little or no effect on the frequency and severity of my spasms and made me groggy and mentally foggy. She referred me to the neurology clinic at Vanderbilt.
The Neurologist with whom I met was positive and said there were several drugs we should try before considering surgery. I'm glad he did. He prescribed Trileptal (aka Oxcarbezepin). I started at 600mg per day (1 pill twice a day). The problem, of course, is that since I wasn't having symptoms at the time we weren't sure how effective the drug was. At the beginning of November I started having twinges - historically a sure indicator that more pain was on the way. He increased my dosage to 900mg per day (2 pills in the morning & 1 at night). By the end of the week my symptoms had stopped! That is a first in 8 years of dealing with this! Almost as important the side effects are almost non-existent. I have had no mental fogginess and the fatigue - even with the increased dose - is minimal. I notice it if I sit and try to read during the peak time for the blood level of the drug which is about 5 hours after I take the pills.
I am very encouraged. I hope this is of use or at least gives hope to those of you dealing with GPN.
Sounds like very good news, John. I don't take any meds but it's getting to the point where I have GPN pain most of the day and part of the night. Pretty soon I'll have to take something. It's good to know there are drugs that work without horrendous side-effects.
Just an update. I am still symptom-free after beginning the trileptal. I also have a cold now which has been a sure-fire way to begin an episode of spasms. The pharmacology is, of course, very individualized but I absolutely suggest discussing the use of this drug with a Neurologist. It appears that ENTs do not generally use it and therefore you need to talk to a neurologist about its use for GPN. Good luck to us all!
Good news John that Trileptal is working for you! I can just imagine the relief you must feel. I have GPN (left), but also have bilateral trigeminal neuralgia, bilateral occipital neuralgia, & hemifacial spasm. My new neurologist has recommended I try Trileptal. However, because he did not bother to review my complicated medical history prior to my appointment, he did not realize that it is guaranteed to interact with many of my medications (I have many health problems and take many different RX's so I am very diligent about checking into this ahead of time but doctors are not). Do you mind me asking if you are otherwise healthy except for the GPN or do you have other medical problems and take other medications in addition to the Trileptal? I know that is it is highly unusual for people to not have side effects from that drug and when reading the drug manufacturers prescribing information it is a very scarry drug (with regard to side effects and interactions) especially for me considering all of my existing issues but my doctors are not giving me any other choices since Gapabentin combined with several other meds are not treating the above problems along with the GPN (I am going through extensive workup for autoimmune diseases etc because I also have bodywide neuropathy, myelopathy.......have seen every "ologist" there is...lol.). Of course, my neurosurgeon who specializes in TN, GPN, ON, etc. is more than willing to cut me open at a moments notice even though there is no guarantee that this will cure the problems since they may be due to neuropathy, autoimmune disease, or a hereditary disease. Hearing from you about your health history and meds would make me feel much better about taking Trileptal if I am left with no resort but to try it. Thank you,
I am glad to share anything that might help. I am in overall good health and pretty active. My other medications include two for high blood pressure (courtesy of my genetics I think) - those are metroprolol succinate and lisinopril. I take simvastatin for cholesterol (also courtesy of my genes) and omeprasole for chronic heart burn likely thanks to the stress of the working world today. I also take a mega vitamin D2 once per week. I occasionally take OTC sinus tylenol and Mucinex DM when cold season rears its head. I've had both since starting trileptal and have detected no issues.
To-date I have had no adverse side effects to the trileptal except for mild drowsiness about 5 hours after I take it. According to my neurologist this is the point when the blood levels peak. It is not an issue though I do try to avoid activities which require me to sit still like reading or meetings - the drowsiness is strong enough to make it likely I will be dozing. Good trade for being free of GPN symptoms.
It sounds like your medical issues are a real gordian knot and I hope that you and your "-ologists" can find a way to cut through! Please let me know if I may provide further information.
Best wishes,
John
SDCalifGirl said:
Good news John that Trileptal is working for you! I can just imagine the relief you must feel. I have GPN (left), but also have bilateral trigeminal neuralgia, bilateral occipital neuralgia, & hemifacial spasm. My new neurologist has recommended I try Trileptal. However, because he did not bother to review my complicated medical history prior to my appointment, he did not realize that it is guaranteed to interact with many of my medications (I have many health problems and take many different RX's so I am very diligent about checking into this ahead of time but doctors are not). Do you mind me asking if you are otherwise healthy except for the GPN or do you have other medical problems and take other medications in addition to the Trileptal? I know that is it is highly unusual for people to not have side effects from that drug and when reading the drug manufacturers prescribing information it is a very scarry drug (with regard to side effects and interactions) especially for me considering all of my existing issues but my doctors are not giving me any other choices since Gapabentin combined with several other meds are not treating the above problems along with the GPN (I am going through extensive workup for autoimmune diseases etc because I also have bodywide neuropathy, myelopathy.......have seen every "ologist" there is...lol.). Of course, my neurosurgeon who specializes in TN, GPN, ON, etc. is more than willing to cut me open at a moments notice even though there is no guarantee that this will cure the problems since they may be due to neuropathy, autoimmune disease, or a hereditary disease. Hearing from you about your health history and meds would make me feel much better about taking Trileptal if I am left with no resort but to try it. Thank you,
I am glad to share anything that might help. I am in overall good health and pretty active. My other medications include two for high blood pressure (courtesy of my genetics I think) - those are metroprolol succinate and lisinopril. I take simvastatin for cholesterol (also courtesy of my genes) and omeprasole for chronic heart burn likely thanks to the stress of the working world today. I also take a mega vitamin D2 once per week. I occasionally take OTC sinus tylenol and Mucinex DM when cold season rears its head. I've had both since starting trileptal and have detected no issues.
To-date I have had no adverse side effects to the trileptal except for mild drowsiness about 5 hours after I take it. According to my neurologist this is the point when the blood levels peak. It is not an issue though I do try to avoid activities which require me to sit still like reading or meetings - the drowsiness is strong enough to make it likely I will be dozing. Good trade for being free of GPN symptoms.
It sounds like your medical issues are a real gordian knot and I hope that you and your "-ologists" can find a way to cut through! Please let me know if I may provide further information.
Best wishes,
John
SDCalifGirl said:
Good news John that Trileptal is working for you! I can just imagine the relief you must feel. I have GPN (left), but also have bilateral trigeminal neuralgia, bilateral occipital neuralgia, & hemifacial spasm. My new neurologist has recommended I try Trileptal. However, because he did not bother to review my complicated medical history prior to my appointment, he did not realize that it is guaranteed to interact with many of my medications (I have many health problems and take many different RX's so I am very diligent about checking into this ahead of time but doctors are not). Do you mind me asking if you are otherwise healthy except for the GPN or do you have other medical problems and take other medications in addition to the Trileptal? I know that is it is highly unusual for people to not have side effects from that drug and when reading the drug manufacturers prescribing information it is a very scarry drug (with regard to side effects and interactions) especially for me considering all of my existing issues but my doctors are not giving me any other choices since Gapabentin combined with several other meds are not treating the above problems along with the GPN (I am going through extensive workup for autoimmune diseases etc because I also have bodywide neuropathy, myelopathy.......have seen every "ologist" there is...lol.). Of course, my neurosurgeon who specializes in TN, GPN, ON, etc. is more than willing to cut me open at a moments notice even though there is no guarantee that this will cure the problems since they may be due to neuropathy, autoimmune disease, or a hereditary disease. Hearing from you about your health history and meds would make me feel much better about taking Trileptal if I am left with no resort but to try it. Thank you,
Christina
Thanks John for the reply....so kind of you to be willing to share...really does help with my decision making...I take metoprolol too but for a different condition (chronic tachycardia due to autonomic nervous system dysfunction). Glad you are able to function and work on the Trileptal and be relieved of GPN symptoms! Thank you, Christina