Hi guys,
I have had TN type 1 since 2005. I was able to manage without any meds until 2014 when I had a severe flare up.
Since 2014 I have been on and off on meds (Oxcarbazepine and Gabapentin).
Are any of you managing fine on meds, and if so for how long? I am hoping there will be many people who have managed okay for many years, a decade or longer.
Red, do you happen to have any stats / data on this? Unfortunately I couldn't find any research papers that address this.
Thanks!
I've unfortunately seen no published long-term follow-up data on the continuing effectiveness of medications in TN. That said, I've met quite a number of people who have been able to manage their TN pain for many years on Carbamazepine (Tegretol), Oxcarbazepine (Trileptal) or Gabapentin (Neurontin), with acceptable levels of side effects. My wife started on Tegretol almost 20 years ago, and switched to Neurontin four years later at her own request after she read about cumulative effects of Tegretol on the liver in some patients. She has been well managed on Neurontin for 16 years at 2700 mg/day (800 mg at mealtime plus 300 mg before sleep. Unlike some patients, she has no problems with short term memory or balance.
Please keep in mind that in a forum like LWTN, we are most likely to hear from patients who haven't had as much success managing TN with meds.
Go in Peace and Power
Red
According to your profile, chiropractic originally helped, which would suggest your neck was indeed the cause of your TN. My thoughts would hence be to concentrate on this aspect, you have a rare illness initially helped by chiro, why would the cause of a rare illness change? A worsening of the original cause, the neck, is more than likely, why not explore the other avenues available in this direction?
Regards, and hoping you have a better time of it soon.
Thanks Red, that would make sense. It does seem that a good amount of LWTN members may not be having much success managing with meds for a decent amount of time.
From your experience talking with people over the years, if you had to approximate it, the LWTN members or those who are unable to manage with meds long term comprise what percent of total TN patients? Perhaps 10-20% I am thinking?
Here is where I am scratching my head though- Dr. Ken Casey in that video of his mentioned that usually meds stop working after some time... and on the other hand, the neurologist at Stanford's facial pain clinic told me many people manage just fine with meds.... so I am trying to reconcile these seemingly contrasting statements and figure out are those people (for whom meds don't manage the pain long term) a MINORITY?
Thanks
Knowpain, because I have worked with and assisted people who are having a rough time, I've not been in a position to see others who sail through with the assistance of medications and who don't frequent support sites. Though I consider Dr Casey very authoritative, he likely deals with the same issue. Patients don't come to him regularly when they aren't in pain. If I had to guess based on thousands of correspondence conversations, I would say at least half of all TN patients find that a medication stops working after initial success. The number who are outright allergic or hypersensitive to TN meds in the anti-seizure family are likely less than 5% of people I've talked with.
Sorry I can't shed more light on this for you.
Go in Peace and Power
Red
If the initial cause is not addressed, which ever school of thought as the cause, which are degenerative in nature it would make sence that in the majority Meds would stop working at some point.
knowpain said:
Thanks Red, that would make sense. It does seem that a good amount of LWTN members may not be having much success managing with meds for a decent amount of time.
From your experience talking with people over the years, if you had to approximate it, the LWTN members or those who are unable to manage with meds long term comprise what percent of total TN patients? Perhaps 10-20% I am thinking?
Here is where I am scratching my head though- Dr. Ken Casey in that video of his mentioned that usually meds stop working after some time... and on the other hand, the neurologist at Stanford's facial pain clinic told me many people manage just fine with meds.... so I am trying to reconcile these seemingly contrasting statements and figure out are those people (for whom meds don't manage the pain long term) a MINORITY?
Thanks
Thanks Red and Aiculsamoth.
Upper cervical chiropractic (adjusting the C1 and C2 vertebrae) gave me okay/decent pain relief for many years. The thing is the relief was always temporary, and my adjustments would never 'hold'. From what I've read that is a frequent problem with chiropractic patients who have to keep getting re-adjusted every few weeks.
The problem is that it is so difficult to diagnost / pinpoint the cause. I will probably try Prolotherapy next. The two prolotherapy doctors I know (one is a DO, the other is an MD with physiatrist specialization) both say that ligament laxicity / instability of the C1 / C2 vertebrae due to weak / loose / damaged ligaments can cause those nerves to be agitated. Those nerves can also refer pain into the face.
However, that does not address the issue of a lack of inhibitory action (where the appropriate neurons stop the excessive electrical firing once it starts). That is what Dr. Allan Basbaum is currently researching at UCSF, where they have successfully implanted stem cells into rats that interweave into the existing neural structures and start inhibiting the excessive firing of the neurons.
I have also tried cranio sacral therapy / manipulation by a DO but that didn't help over the 3-5 sessions I attended. Chiropractic gave the best relief although temporary, but now it has literally STOPPED working. That worries me. Perhaps chiropractic had helped treat a trigger of the pain, but the underlying cause may be different. Who knows.
Aiculsamoth, I read your Cervicogenic Model paper, I think that may very well be a factor in this TN overall. Any suggestions on what I can look into next? Apparently the neurologists / neurosurgeons never talk about the neck and C1 C2 vertabrae ever in relation to TN pain.
How could I forget to mention. I had two teeth pulled (one of left side, one on right side) on my upper jaw. (I think they were bicuspids??). This was what my orthodontist at the time (he was old and retired soon after) suggested to do, to make more space in my mouth before he put my braces on. All the newer dentists / orthodontists these days say it is VERY BAD to pull teeth just for braces....
Interestingly enough, my TN pain started 1-2 years after that.......
What a confusing disease this is.
One method that might help to partially figure out the cause or trigger is to get a local anesthetic injection into my upper cervical area and see if that alleviates or stops the pain in the face. If indeed the neck nerves are referring pain up through the ganglion that connects them to the trigeminal nerve, then it might reduce the TN flare up pain.
I will mention that when I go to the pain clinic and see what they say.
Not an easy one is it, hence this forum and existence.
I don't actually agree with ' the holding of adjustments', not about to explain now but there is so much more to neck/ cervical therapy than adjustments. If your neck would appear to be the original cause, then I would follow that line. My concern being prolotherapy, though I'm not anti, just that it should be used with reasonable justification. Ligamental laxity does/ can cause what your DO describes but most of the time it is due to connective tissue disorders present, e.g. Rheumatoid arthritis and many others, Without additional symptoms, of a connective tissue disorder it would literally seam a stab in the dark. What reasons are there to suspect laxity?, treatment for such without justification would seem off.
Unless I am short of an explanation of inhibitory mechanisms, Dr. Allan Basbaum research seems limiting in it's nature. I'm open to the idea that said inhibitory mechanisms might exist, but these would surely be counter productive against the original reaction of Do Something. If I stuck my hand in the fire I wouldn't expect a inhibitory mechanism to keep it there. I see the logic for the potential argument, but I don't see nature in it's method acting that way- supplies a warning, no action, we'll cancel it?
I agree the neck could be a trigger, of an already oversensitised trigeminal complex, and hence could be a trigger for TN, but what sensitised it the first place in the absence of overt pathology? Certainly we have hormones and diet influences as demonstrated by numerous studies into other trigeminal complex complaints, in this instance the neck if not a direct factor could be the straw that broke the camels back, hence can be a consideration in treatment along with the preceeding issues.
knowpain said:
Thanks Red and Aiculsamoth.
Upper cervical chiropractic (adjusting the C1 and C2 vertebrae) gave me okay/decent pain relief for many years. The thing is the relief was always temporary, and my adjustments would never 'hold'. From what I've read that is a frequent problem with chiropractic patients who have to keep getting re-adjusted every few weeks.
The problem is that it is so difficult to diagnost / pinpoint the cause. I will probably try Prolotherapy next. The two prolotherapy doctors I know (one is a DO, the other is an MD with physiatrist specialization) both say that ligament laxicity / instability of the C1 / C2 vertebrae due to weak / loose / damaged ligaments can cause those nerves to be agitated. Those nerves can also refer pain into the face.
However, that does not address the issue of a lack of inhibitory action (where the appropriate neurons stop the excessive electrical firing once it starts). That is what Dr. Allan Basbaum is currently researching at UCSF, where they have successfully implanted stem cells into rats that interweave into the existing neural structures and start inhibiting the excessive firing of the neurons.
I have also tried cranio sacral therapy / manipulation by a DO but that didn't help over the 3-5 sessions I attended. Chiropractic gave the best relief although temporary, but now it has literally STOPPED working. That worries me. Perhaps chiropractic had helped treat a trigger of the pain, but the underlying cause may be different. Who knows.
Aiculsamoth, I read your Cervicogenic Model paper, I think that may very well be a factor in this TN overall. Any suggestions on what I can look into next? Apparently the neurologists / neurosurgeons never talk about the neck and C1 C2 vertabrae ever in relation to TN pain.
Who would be able to diagnose / figure out whether someone has connective tissue disorders? I've heard a lot about viral causes but the medical community doesn't seem to support it or believe it. It is mostly alternative practitioners or MD+alternative combo practitioners that look into it....
I'll explore any method that sounds reasonable... I have been a bit hesitant to try Prolotherapy because I have a hard time understanding the theory - how a simple dextrose injection into the ligaments induces inflamation and causing the body to strengthen the ligament itself.... but I am not a doctor nor a medical researcher.... what caused the ligament damage in the first place? Some people say repetitive chiropractic manipulation itself weakens ligaments and makes them loose (I've have my C1/C2 adjusted 75-100 times over the last 6 years)
One reasoning for the inhibitory mechanism is that TN responds so well to anticonvulsants. Epilepsy seems to be related to an inhibitory problem as well. The pain signal or warning in the first place in TN is wrong. It seems to be a false warning, but then the shocks keep going/firing, so you can see it either as a warning problem, or an inhibitory problem I guess. I think I see what you are saying. You can read what Dr. Basbaum says here
The other question I've always had has also been mentioned before. It there is any artery / vessel compressing the nerve root, then why does TN go into sudden remission sometimes? Does the nerve automatically heal itself for 2 months of no pain, and then suddenly it gets damaged again by the compression and the pain comes roaring back? I am no scientist, but when neurosurgeons and everyone says the compression addresses the problem, I don't quite believe that. I think there are a lot of confounding effects at play.
In my case, the pain after about 10 years has suddenly gotten worse. I see the same chiropractor who does the same adjustments every time. I've even been xrayed again so he can see if the neck subluxation is the same or different. So in your opinion, what else should I do to follow this 'neck clue' that helped me for at least 10 years?
Thanks
I was on Neurontin for 14 years and did fine on a pretty high dose, 3600mg a day. I’m on a trial off it now after weaning off.
I am wondering if anyone has tried acupuncture? I was going to make an attempt with it, but after reading this I am wondering if chiropractic adjustment might be the better choice?
Hi Anna, that's good to hear! Hopefully you can continue without it or with the dose lowered!!
Did you notice any trends during the 14 years on it? I'm assuming you had to increase the dose over time? Did your body start getting used to any side effects, and did the pain change in any way positively or negatively?
Anna Willard said:
I was on Neurontin for 14 years and did fine on a pretty high dose, 3600mg a day. I'm on a trial off it now after weaning off.
Hi Alli,
I have tried acupuncture, along with homeopathy, ayurveda, chinese herbs, chiropractic, and dental splints.
Nothing gave me immediate relief except for UPPER CERVICAL chiropractic. However, I would advise you to be careful with chiropractic though. I would recommend also trying acupuncture though to see if it helps you.
I have seen 6 different chiropractors, and although I don't like making blanket statements, I would say in my opinion most might do more harm than good to your neck / spine. First of all, I wouldn't go to a full spine chiropractor. Go to one that specializes in the neck. This includes the Blair technique, atlas orthogonal, and a few others you can google. They all fall under the "upper cervical category". You can look into this.
Out of the 6 that I saw, only 2 really helped my pain here in northern california. Sometimes it is hard to find a good chiropractor. The others methods seem quite harsh and don't seem to be very specific or precise in terms of adjusting the C1 C2 vertebrae. For a serious condition like TN, it is important to get specific adjustments from someone who knows the neck well.
Alli said:
I am wondering if anyone has tried acupuncture? I was going to make an attempt with it, but after reading this I am wondering if chiropractic adjustment might be the better choice?
Greater occipital/ cervical nerve blocks have been shown to reduce TN, and can be diagnostic.
Sada Teresa Ovalle et al. Probable relationship between trigeminal neuralgia and cervical spine pathology.
Case Reports. Rev. Soc. Esp. Dolor v.15 n.5 Narón (La Coruña) jun.-jul. 2008.
http://scielo.isciii.es/scielo.php?pid=S1134-80462008000500004&...
Occipital nerve block is effective in craniofacial neuralgias but not in idiopathic persistent facial pain
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3311831/http://www.ncbi...
A recent research paper of interest reports a correlation between migraine and TN concluding
"Migraine is a previously unidentified risk factor for trigeminal neuralgia. The association between these conditions suggests a linked underlying mechanism, which is worthy of further exploration. "
http://cep.sagepub.com/content/early/2015/12/20/0333102415623069.ab...
Considering Migraine has been shown to also be relieved with neck/ cervical nerve blocks, would also seem to add to the above association.
http://www.ncbi.nlm.nih.gov/pubmed/20464617 - greater occipital nerve block in migraine
knowpain said:
One method that might help to partially figure out the cause or trigger is to get a local anesthetic injection into my upper cervical area and see if that alleviates or stops the pain in the face. If indeed the neck nerves are referring pain up through the ganglion that connects them to the trigeminal nerve, then it might reduce the TN flare up pain.
I will mention that when I go to the pain clinic and see what they say.
Mod support,
is, not wanting to ask, knowledgeable in this direction, and might want to offer his input, way better than I might, which would be a poor effort, in comparison.
knowpain said:
Who would be able to diagnose / figure out whether someone has connective tissue disorders? I've heard a lot about viral causes but the medical community doesn't seem to support it or believe it. It is mostly alternative practitioners or MD+alternative combo practitioners that look into it....
I'll explore any method that sounds reasonable... I have been a bit hesitant to try Prolotherapy because I have a hard time understanding the theory - how a simple dextrose injection into the ligaments induces inflamation and causing the body to strengthen the ligament itself.... but I am not a doctor nor a medical researcher.... what caused the ligament damage in the first place? Some people say repetitive chiropractic manipulation itself weakens ligaments and makes them loose (I've have my C1/C2 adjusted 75-100 times over the last 6 years)
One reasoning for the inhibitory mechanism is that TN responds so well to anticonvulsants. Epilepsy seems to be related to an inhibitory problem as well. The pain signal or warning in the first place in TN is wrong. It seems to be a false warning, but then the shocks keep going/firing, so you can see it either as a warning problem, or an inhibitory problem I guess. I think I see what you are saying. You can read what Dr. Basbaum says here
The other question I've always had has also been mentioned before. It there is any artery / vessel compressing the nerve root, then why does TN go into sudden remission sometimes? Does the nerve automatically heal itself for 2 months of no pain, and then suddenly it gets damaged again by the compression and the pain comes roaring back? I am no scientist, but when neurosurgeons and everyone says the compression addresses the problem, I don't quite believe that. I think there are a lot of confounding effects at play.
In my case, the pain after about 10 years has suddenly gotten worse. I see the same chiropractor who does the same adjustments every time. I've even been xrayed again so he can see if the neck subluxation is the same or different. So in your opinion, what else should I do to follow this 'neck clue' that helped me for at least 10 years?
Thanks
Evening Red,
We've been in discussion about the neck and coexisting head and facial pain, and wondered if you have any thoughts on the above/ below. I believe it strengthens my opinion on a connection. As devil's advocate ( meant with best intentions), any thoughts?
aiculsamoth said:
Greater occipital/ cervical nerve blocks have been shown to reduce TN, and can be diagnostic.
Sada Teresa Ovalle et al. Probable relationship between trigeminal neuralgia and cervical spine pathology.
Case Reports. Rev. Soc. Esp. Dolor v.15 n.5 Narón (La Coruña) jun.-jul. 2008.http://scielo.isciii.es/scielo.php?pid=S1134-80462008000500004&...
Occipital nerve block is effective in craniofacial neuralgias but not in idiopathic persistent facial pain
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3311831/http://www.ncbi...
A recent research paper of interest reports a correlation between migraine and TN concluding
"Migraine is a previously unidentified risk factor for trigeminal neuralgia. The association between these conditions suggests a linked underlying mechanism, which is worthy of further exploration. "
http://cep.sagepub.com/content/early/2015/12/20/0333102415623069.ab...
Considering Migraine has been shown to also be relieved with neck/ cervical nerve blocks, would also seem to add to the above association.
http://www.ncbi.nlm.nih.gov/pubmed/20464617 - greater occipital nerve block in migraine
knowpain said:One method that might help to partially figure out the cause or trigger is to get a local anesthetic injection into my upper cervical area and see if that alleviates or stops the pain in the face. If indeed the neck nerves are referring pain up through the ganglion that connects them to the trigeminal nerve, then it might reduce the TN flare up pain.
I will mention that when I go to the pain clinic and see what they say.
I'm uncertain which of us is the Devil's advocate, Moth. Perhaps the central question is this: IF (and I have very strong reservations about this premise) compression or damage to the trigeminal nerve roots in the cervical spine is associated with some cases of TN, then what specific treatment protocol would seem to be indicated, and where is the medical evidence that it works without harm to patients?
Red,
Sure, who is 'Devil's advocate', basis of previous debates. On the balance of previous, you're a hard nut to crack, considering previous evidence presented, with regard to the neck and TN, although at this point you should be wavering despite your previous dogmatic responses.
With the evidence, on the whole, you would seem to be arguing against alot of intelligent people previousley quoted as authors in the references provided.
In asking the question "then what specific treatment protocol would seem to be indicated, and where is the medical evidence that it works without harm to patients? ", would seem to be asking that I remove the corners of the square to invent the wheel, already done ( otherwise patent pending!).
A medic should consider the neck as a possible cause for TN, as the trigeminal nerve complex extends to the upper neck, indeed the lower neck can influence the upper neck and as such may be also implicated. Evidence has shown this.
As such, there would be no specific protocol beyond any other that would treat neck dysfunction/ pathology/ problems.
The majority, I believe, of medical interventions, for cervical/ neck dysfunction have already established risk factors in the research literature, those that could be argued haven't, would not find it hard to compete wth recognised risk factors for MVD- death.
Medics up and down, are performing procedures for cervical/ neck dysfunction with evidence. The approach for suspected TN due to a cervical cause should be little different for cervicogenic headache for example.
Patient narrative,consultation, differential diagnosis, examination, further diagnostic procedures if required ( blood tests, imaging etc.), diagnosis, treatment, reassessment; continuation of treatment or referral, is adequate for TN ( if considering the whole trigeminal complex including the neck), but is unfortunately ignored by many medics, due to ignorance of the anatomy, or preconceived ideas.
Feel I've removed the third + corner of said square, we should soon be rolling.
Moth