Yes, surgery is a long lasting and proven treatment, while Botox is neither.

Thank you for responding so quickly, very kind of you. I will avoid cost questions, as pain relief is priceless at this point after the misery i’ve lived with. But 3 months does not sound like a glowing review unfortunately. Is this something you still highly recommend for a lot of folks after 10 years of comments (wow!), or has it not shown the effectiveness you’d hope for? I read one study on NIH which I will link below (hopefully it isn’t removed) called “The Use of Botulinum Toxin A in the Management of Trigeminal Neuralgia: a Systematic Literature Review” that gave me hope. If Botox isn’t the long term answer, then maybe unfortunately i’ll need surgery, as I have to do something, my life is mostly staying indoors at this point and not eating much. Thank you again for taking the time to help people, you are really living up to your oath!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7393930/

There are no clear answers to questions about the use of Botox for trigeminal neuralgia because no controlled trials have been conducted. The relief, if there is any, usually lasts three months.
The cost is usually lower than when treating migraines because the amount of Botox needed is much smaller.

Hello Doctor,

I had a quick question that I hope you could answer regarding TN and Botox. As I will have to pay for this out of pocket, I was wondering (I researched for hours and haven’t found clear answers) what the frequency is of patients who have to repeat the treatment, and is it often just a second go-round at 6 months, or do people end up having to do this for the rest of their lives? I have been in pain for 2.5 years and would love to relieve it, and my dentist is willing to do the treatment, but wanted to compare this to surgery as far as long-term goes. Thank you in advance, it’s very kind of you to take time answering questions for people.

I would see a pain specialist rather than a neurologist – they are more likely to do it. Although the insurance is not likely to pay, the amount of Botox is relatively small, so it should not be too expensive.

I live in central Florida, and I have been to several Neurologists, and each has said that Botox is not FDA approved to treat Trigeminal Neuralgia (TN) and, therefore, they will not administer it. They only use it to treat migraines. Do you know if there is any movement or progress in getting FDA approval to treat TN? If you administer this in NYC, does medicare pay for the treatment?

I cannot offer individual advice, especially with such a limited amount of information. You are welcome to make an in-person or a virtual appointment.

I have suffered from BMS and what I belive is Trigeminal Neuralalgia after researching the symptoms. I have pain from the moment I wake up until I go to sleep at night. This pain started in my lower right jaw/gum after MUCH dental work (a crown, root canal that was done twice, the tooth pulled and then an implant put in. Do you think I should give Botox a try? I am currently on Klonapin once a day.

Yes, I’ve injected Botox into the gums and side of the tongue with good relief of pain.

can botox be used intraorally if you know the specific branch that is causing the pain?

Yes, Botox can be tried for any type of neuralgia. Facial expression is not frozen, but depending on the location of pain it can cause facial asymmetry.

Can Botox be given to ATN or TN2 patients? Does the use of Botox freeze the facial expression/face?

i seek a doctor in south florida or anywhere in florida to help me with Botox
Can anyone help . I have tried almost every surgery I read of ,nothing is working long term
or at this point very well . I have gone to Doctors in 4 states and traveled alot of miles.
Thanks

I would suggest looking for a neurologist outside your immediate area and calling ahead to see if he or she is willing to prescribe Valium for trigeminal neuralgia without frequent visits. It might help to bring your records as far back as you can find to document that you’ve been taking Valium for years without needing to escalate the dose. You may also want to search for a neurologist who offers telemedicine – video consults. It is possible that a family doctor may be willing to prescribe, especially if you provide documentation that you’ve done well for years on a stable dose.

1/11/18 Im a medically retired RN, BS. I was dx’d with left-side Trigem around 1998. Ive also had TMJS since the 80s & 2 whiplash injuries – 1981 & 1991- w/permanent cervical & muscle damage. All 3 conditions “feed off of each other.” I have NUMEROUS drug allergies which include: ASA, ALL NSAIDs, Vicodin, Codeine, Neurontin (so I won’t touch Lyrica!), ALL tricyclics, SSRIs, SSNRIs, SDRIs. – – I have used VALIUM at various doses for 36 years for all 3 diseases & IT IS THE ONLY THING THAT WORKS! I just lost my PCP who Rxd it for me. I live (not by choice) in a remote/rural area in the “central coast” area of CA with FEW drs, few options/choices & very substandard medical care. With the fake “opioid crisis” raging on now since 2016 & subsequent increasing hysteria & fear towards BOTH opiates & BENZOS … Im now unable to find a Dr willing & unafraid to continue my 36-yr Valium tx regimen. I’m on 5 mg qd … PRN. I don’t take it prophylactically. I’m old with not too much time left (20 yrs, give or take) … so I don’t understand the fear & reluctance of the few drs I’ve encountered. Without Valium I’m on my knees pounding my fists on the floor bc the PAIN is SO unbearable. Oh -there are only 2 Neurologists in the entire county & they split their time among… 4 counties total! Ive NEVER been seen by a Neuro & I bet neither one here does Botox injections or will Rx Valium. Any suggestions outside of moving back to civilization – LA County? Thanks.

You are welcome to come to NYC for treatment- I will be happy to do it.

I am having a hard time finding a neurologist to treat my left sided TN pain with Botox.I want a Botox injection for treatment. After reading many studies it seems like the smartest way to treat this horrible pain. Please advise who I should go to. I can even go to another state. I don’t care where. I look forward to your advice. I can barely eat, drink, brush my teeth, touch my lips in any way or have any normal function with my mouth. I’m in pain nearly all the time.
Thanks in advance for a point in the right direction.

Robin

I am very happy that I could make a difference in your mother’s life and really appreciate you letting me know.

My Mother was diagnosed just short of her 90th. The neurologist, not particular helpful, prescribed Gabapentin and Lyrica, they didn’t work. Finally after 6 months it went dormant for about 2 years and then it started again and thanks to your column I called her GP and asked him if he would prescribe the oxcarbazepine and within a week she had very little pain for 8 months. She passed away August 2 at 94 of natural causes but thank God she found something that helped with the TGN pain.

Very few neurologists give Botox for trigeminal neuralgia, but you may want to check with Drs. Andrew Blumenfeld and Jack Schim who practice in southern California. Your mom may also want to ask her doctor if she reached the maximum dose of carbamazepine and if no, to increase it. If yes, she may respond better to oxcarbazepine (Trileptal) or another drug.

Hi, my mom was diagnosed with trigeminal neuralgia. She takes carbamazepine (tegretol) but doesn’t help much. I’m looking into botox for her ,but I’m having trouble finding a doctor in southern California. Does anybody know of a Dr. In southern California that injects botox for TN?.
Thanks in advance

I am in Winchester Virginia my mom has come to the end of the medications, recently toxic from the Tegretol. Additionally failed Gamma Knife & Glycerol Injection recipient. Is there any doctor you could suggest in the Winchester, Virginia area? Thank you so much for taking an interest in this horrible condition.

Yes, Botox is safe for a 93 year old. My oldest patient whom I still treat with Botox for chronic migraines is 98. There is no scientific proof that Botox is effective for trigeminal neuralgia, but because trigeminal neuralgia is a relatively rare condition, it is not likely that definitive clinical trials will be conducted any time soon.

A few months before my Mother’s 90th in 2014, she started having severe pain in the right side of her face. In the beginning they thought it was a dental issue and she had an extraction of a broken off root of a long ago gone tooth. She continued having pain and after several trips to the oral surgeon, he told her that he felt that she might have TN. At the time we’d never heard of it. Turns out her GP of 20 years Father also had the disease for the last 10 years of his life. We’ve tried Gabapentin and Lyrica, both made her unsteady and subject to falling in the home where she lived by herself. Soon after she moved in our house and those drugs really didn’t help. Eventually the TM calmed down and the pain happened less often. Now it is back and horrible, worse than before. She now is taking Hydrocodone for the pain, as little as possible, but it causes its own problems. I am trying cannabidiol now along with the HC and we think it may help but not much. I’ve started taking her to an acupuncturist as a last resort because I’m running out of options……..until a dermatologist friend suggested Botox last week and then another friend who has terrible migraines mentioned it this weekend. I am willing to try anything at this point. To watch her suffer, lose weight and become nauseous from the HC is almost to much take. Do you think a 93 year old might be a candidate for Botox treatment and if yes, do I look for a neurologist that specializes in this?

Ear pressure is also due to pressure by the tumor, which also causes secondary TN. Botox is worth trying since it is a relatively safe procedure, although it can cause temporary facial asymmetry. Gamma knife usually causes much less nerve damage than surgery, but it is less effective.

Dr. Mauskop, I have Trigeminal Neuralgia (5th cranial nerve on right side of face), Burning Mouth Syndrome and a new symptom of ear pressure as a result of a meningioma brain tumor pressing on the nerve as it grew and was finally found a year later by having an MRI. I wish more specialists would suggest an MRI since my support group has several other people suffering with neuralgia issues caused by a brain tumor and time is critical. I just added the TN symptoms 4 months ago and my tumor is now intertwined with the nerve. Is ear pressure common for TN or is it more likely caused separately by the tumor? Right now I take carbamezapine but the neurosurgeon says surgery/gamma knife/radiotherapy could make my symptoms worse or cause new problems. So I would be interested in knowing if botox is an option for me, especially if whatever procedure he suggests after the next MRI ends up making things worse. Thank you.

Yes, Botox can still work. Her doctor is correct – it takes at least 5 days, and often longed for Botox to take effect. The relief she had the first two days was a placebo response. Botox never works so fast.

Hi there. My wife had injections of BOTOX for her th last Thursday. For about 15 hours she was completely pain free – after suffering from horrible pain for 2 years. She is 55. Unfortunately it has come back with a vengeance. Her Dr said it would take up to 10 days to take affect. Do you think it could still work or is that it? Thanks

Unfortunately, it is difficult to find someone who has injected Botox for TN because it is a rare condition. However, a neurologist who treats many migraine patients might have some experience with Botox for TN. You can find such a neurologist on Allergan’s website – https://www.botoxchronicmigraine.com/find-botox-specialist/

I have TN for 2 years now, and they come and go. It was gone for a good 4 months and I stop taking my meds and now its back. Do you know any docs that will do botox in the Phoenix/Gilbert AZ area.

If you do not hear from any other TN sufferers, you can ask your primary care doctor for a recommendation for a neurologist who is specializing in headaches and pain. You can also use American Academy of Neurology website to search for such a doctor – https://patients.aan.com/findaneurologist/

I’m living with TN and searching for a doctor in Honolulu area.

Check with Drs. Andrew Blumenfeld and Jack Schim in Encinitas. I know that they inject Botox for migraines and it is very likely that they would know how to inject for trigeminal neuralgia as well.

Recommendations in Southern California, Orange County, for doctors administering Botox for TN patients..? Thanks in advance

Regarding someone near Fairfax, VA, I have been treated with botox for TN for several years by an oral surgeon in Annandale. His name is Dr. Labriola. My pain is in my right lower jaw, gum, cheek area. If your pain is outside of the mouth area, this info may not apply, however.

I would look up Dr. Stuart Stark in McLean, VA and ask if he does it.

I live in Fairfax Virginia and have had TN since 2002. It comes and goes and I self regulate my Gabapentin. I have heard of the Botox treatments and it gives me hope. Do you know of any doctor in the Washington, DC area that gives these treatments?

Yes, pain relief was most likely due to Botox injections, especially because the effect lasted 3 months, which is typical for Botox. It is also typical for Botox to start helping after a couple of weeks. It is also common that each subsequent treatment will provide better relief, but I would not wait too long to repeat Botox. If pain worsens again, there might be less of a cumulative effect, although it should still help.

Hi Dr Mauskop, I have been suffering from post traumatic trigeminal nueropathy for a few years. The medications and a nerve block have been unsuccessful. The area in question is just below my two bottom teeth on the lingual side. I had a botox injection 3 months ago. Since then I had probably my best 3 months since the pain began – but it wasn’t a complete relief and I still had good and bad days. More good than bad which was a relief. Do you think this may have been as a result of the botox or something else? Also I remember it taking about 3 weeks to kick in (if indeed it was the botox that brought a better period). Is this possible? THANK YOU!

It is very surprising that a doctor would say that. Botox is definitely worth trying, as well as many medications, such as gabapentin, baclofen, tizanidine, memantine, and other, as well as a variety of supplements, including cramp bark and boswellia.

my sister suffers terrible pulling sensations on her face after a sensory nerve was cut during surgery to remove a tumour from behind her eye, is there anything she can do? her dr says it will never go away.
please help!

Thank you for sharing your experience. Gabapentin is a very mild medicine as far as side effects, but it is also not highly effective. You were very lucky, because it is very unusual for gabapentin to relieve pain of trigeminal neuralgia at such a low dose of 300 mg a day. Clinical trials for the prevention of chronic migraines used doses up to 3,600 mg a day. Prayer can certainly help, but if you are a non-believer, try meditation.

I checked out 4life web site and it looks like another pyramid scheme, similar to Herbalife. You can buy all these supplements for a lot less on Amazon.com (Doctor’s Best, Nature’s Way, Life Extension are some of the good brands) or Puritan.com.

I feel for anyone that is going through the horrific pain of trigeminal neuralgia as I’ve had it in the past in two separate occasions and each lasted about three months. I must admit I’m not one to take prescription drugs because of all the side effects, but it got so bad I gave in to taking Gabapentin 100 mg 3 x per day and it worked in just a few days. Eventually I was able to reduce the dosage to 2 x per day and then 1 and now it’s been five months I stopped taking it completely. I started taking natural remedies as I believe that this is all caused by high levels of inflammation in the body and daily stress as we age we need to replenish our bodies with nutrients. I’m 65 years old and I take the following natural products from a company called 4life.com :
Recall
BioEfa
Río Vida
Aloe Vera
Stress Formula
Transfer factor-tri factor formula

I had also prayed to God to help me find the way to take this awful pain away. I must say Thank you Lord and AMEN! This so far has worked for me and I hope that it will help someone too. I’m not a sales person and I’m not saying this will work for you but if you would like to try it you can go to the website 4life.com you may want to order with this number: 7464735

I received botox injections all over my face, and they did absolutely NOTHING to my trigeminal neuropathy.

I usually inject Botox superficially into the skin over the painful area rather than into the muscles, which minimizes (but does not eliminate) the chance of “drooping”. The effect of Botox on pain and chronic migraines is thought to be due to blocking of the nerve endings rather than relaxing muscles.

Which muscles did you inject with good effect. I have trigeminal neuropathy, my doctor injected masseter, but he says if he injects other muscles, it’ll droop my face. What muscles can you inject?

Hi Adam, I also have ATN. If you live in Sydney try Dr Stephen Tisch at St Vincents Hospital (Public), Darlinghurst. I had my first botox injection today and am yet to see if it is successful. Best of luck

I am a 50 year old male with tn I have been tormented with this issue from 2007 I have tried it all pretty much all suggested meds from neurologist and I mean all, gamma knife is the key to this issue I swear by it night and day difference it works not micro vasculare decompression surgery witch is more complex it worked

No problem – have your neurologist call. Botox injections for trigeminal neuralgia is even simpler than for migraines.

Thank you for taking the time to share about your experiences with TN patients and botox. I have had TN and nerve damage for 23 years and have been treated with Trileptal and Amitriptyline for 20 years with fair results. I am not a candidate for a MVD because of the nerve damage. Breakthrough pain persists and has progressed dramatically over the years. My neurologist has suggested botox treatments, and although he has many migraine patients he is treating with botox, he has not yet injected anyone for TN. As such, he does not know how to perform the procedure for a TN patient. He needs to know where the injects should be located and the amount of botox that is necessary for one treatment. Could I have my neurologist contact you via email to discuss the procedure with you?

I would suggest contacting Dr. Christina Sun-Edelstein, who worked at the New York Headache Center and now lives and works in Melbourne. She injects Botox for chronic migraine headaches and it is possible that she may be able to give Botox for your trigeminal neuropathy.

Hello Dr. Mauskop.
I am a 43 year old Australian male, that has slowly progressive ‘idiopathic trigeminal neuropathy’ – 2nd and 3rd branches, right side. I know this condition is minor compared to others with severe trigeminal disorders, but it is slowly taking toll on my life and family.
I have been trying to discuss the idea of Botox injections to relieve my pain and aching, with various Australian Neuro specialists, but they all dismiss the idea.
Have you heard of Botox being used to treat Trigeminal Neuropathy (constant, chronic symptoms) and do you have any contacts within Australia that may be receptive to the Botox idea?
Thanks for your time!

You may want to check with the manufacturer, Allergan, who has a website that lists the names of doctors who are trained to inject Botox for chronic migraines. Call these doctors to see if any of them have experience injecting Botox for trigeminal neuralgia.

Dr. Mauskop,
Do you know of any doctors that perform this near San Francisco or the West Coast? I am searching for someone for my dad who has been suffering for years and now can not take codeine anymore. If not are you taking patients?
Thank you.

I have trained several Toronto neurologists in treating migraines with Botox, but I don’t know if they would inject it for neuralgia. Trying contacting Drs. Christina Lay at University of Toronto, Dr. Ian Finkelstein or Dr. Marek Gawel.

Hello Doctor Mauskop,

I live in Ontario Canada. Do you know of any doctors that perform this near Oshawa, Ontario or even Toronto? I have had ATN since September of 2006 and have had gamma knife surgery with Dr. Hodai. It was unsuccessful. I am too scared to have an MVD as Dr. Timyanski told me that that I am not a good candidate for the surgery and there is only 60% success rate. He also said there are things worse than death with an MVD and that was enough for me to hear to avoid it. I have left sided ATN with burning and shocks in all three branches. Would Botox be something that may help? Even if the burning could be lessened I would be happy. I can be reached at my email address if you have names of doctors in my area. Thanks so much.

My TGN is kept at bay with botox. My doctor prescribed different medications to deal with the nerve pain. These were not successful. He then prescribed Oxycotin which at least would let me sleep. Finally my local doctor did the Botox shot and told me it should last about six months. It typically lasted about eight. The last shot I had was about two years ago and its only been in the last couple of months that it has been creeping back. The local doctor left so now I have to wait for a referral to a new doctor who will administer the botox. I do not take any other medication for my condition and wish I could share with more people my results!

Millie,
I cannot make any specific recommendations since I don’t know you or the particulars of your case, but in general it is reasonable to try Botox injections before considering surgical treatment since Botox is so much safer. I assume that your neurologist has already prescribed drugs such as Tegretol (carabamazepine) or Trileptal (oxcarbazepine), Dilantin (phenytoin), baclofen, and other. If not, you may want to try those first.

I am a 78 year old woman with tn what would you recommend to relieve pain? Would you recommend mvp? Do you know a surgeon in MO? My family is insisting I look into botox. What are your thoughts?
Thank you,
Millie

You may want to ask your neurologist about trying other drugs for trigeminal neuralgia, such as lithium and topiramate, although they also can cause side effects. In the US neurosurgeons rarely inject Botox, it is usually done by neurologists. If you cannot find a neurologists you may want to ask a dermatologist who injects Botox for wrinkles, although they usually have no experience injecting Botox for migraines or trigeminal neuralgia. I must stress that Botox has not been proven to relieve pain of trigeminal neuralgia, there have been only anecdotal reports that it works. So, I don’t want anyone think that it is proven to work. Even in chronic migraines, where it is definitely proven to work, it does not help everyone – 70% improve and 30% get no relief.

I m 32 yrs old suffering from Atypical trigeminal neuralgia. A female after extraction of wisdom wisdom tooth.I m from indian origin. Wanna botox treatment but in india here there is not any single neuro smurgeon who knows about botox treatment for trigeminal neuralgia.so plz reply me what should I do. Fed up and got rid of taking carbamezpine,gabapantin and pregabalin.

The more the better. So, if you can find someone with more experience.

I met with a neurosurgeon and am considering MVD for my trigeminal neuralgia. He has done 40 of these surgeries. You mentioned you should use a surgeon who has done this procedure many times. Do you think 40 is a good amount?

If Botox helped I would suggest continuing them every 3 months, but if they stop working the real curative procedure for trigeminal neuralgia is microvascular decompression, which is performed by a neurosurgeon. Because this is a very delicate operation, when looking for a neurosurgeon it is very important to find one who has done this procedure many times.

Hello I am 37 years old I was diagnosed with Trigeminal Neuralgia September 14 2011! I have had 7 procedures to cure this TN Disease.. Nothing has relieved my pain.. I need some more options. My pain Dr in Winston Salem NC states I have one of the worse case of TN he has seen in 30 years of his Practice of being a Pain Doctor.. My pain treatments I have had with With Dr Ellis 1 procedure — Gamma knife, 6 procedures Dr Kaprual Phenopalatine Ganglion block with a needle on the face , Phenopalatine Ganglion block through the nose, 3 ketamine infusion brain coma procedures where you are hooked up to IV and medication is dripped from your body slowly and you lay there and looks like you in a coma, and with Dr Christine Hagen, Botox injections. All procedures were experimental. I’m still having some pain.. I’m not in as much pain or having as much facial electric shocks however I’m still having nerve irritations.. Any suggestions would be appreciated Thank you

Yes, it is possible that with continued Botox injections headaches and pain will improve further.

Hello,

I am 49 years old. I have ehlers danlos hypermobility, orthostatic intolerance, and have dealt with headaches most of my life. I was recently diagnosed with occipital and trigeminal neuralgia. My MRI is clear. I take topamax, Pristiq, and trileptal daily. I also my greater occipital nerve ablated a few years ago.

Trigger point injections worked wonderfully at first, but then I had a reaction and my headaches worsened. I recently tried Botox. Although Botox helped the excruciating nerve pain over my eye and temple area, I am still experiencing headaches – nausea, pain behind the eye, etc.

Can further Botox injections help with the actual headache? My daughter has an occipital nerve stimulator (she has EDS hypermobility and POTS).

Thank-you!

In some patients who had microvascular decompression for trigeminal neuralgia recurrence of pain indicates that the teflon patch has slipped out from between the blood vessel and the nerve. In order to avoid repeating the surgery, Botox is a reasonable treatment to try even though no large trials have been conducted to prove that it works. We only have reports of small numbers of patients benefiting. However, Botox is a lot safer and cheaper than doing another surgery. Having Botox after gamma knife should not pose any problems, but it is a decision your doctor has to make.

Hello,

I had MVD for Trigeminal Neuralgia on left side 4 yrs. ago after mediction stopped working on pain and had immediate, complete relief of pain. During the late Spring this year, I began having little nerve twinges in left face and over the next few months, pain increased though it manifested somewhat differently this time. I had severe nerve pain in a tooth that radiated into cheek and side of nose area. An MRI showed another area near the one I had MVD on and i had Gamma Knife this past Thursday. Have you treated patients that have had another problem area develop?
I was also considering Botox injections for cosmetic reasons in the area between the eyebrows and the side of eyes. Are there risks since I just had Gamma Knife?
Thank you.

I will be happy to see you. Please call 212-794-3550 for an appointment. If you have any difficulty getting through yo can email me at drmauskop@nyheadache.com

Hello Dr. Mauskop,

Is there any possibility of scheduling an appointment with you? Finding a neurologist locally in Minneapolis who will do this procedure.

To find a local neurologist who injects Botox go to Allergan (Botox manufacturer) website – http://www.botoxchronicmigraine.com/find-botox-specialist There appears to be 5 doctors in Huntsville who give Botox injections. I would call them first to see if they are willing to inject Botox not for chronic migraine but for neuralgia.

This is a very moving video. I’ve had several patients with equally dramatic response of their trigeminal neuralgia to Botox injections.

my mom suffered from severe trigeminal neuralgia, she found relief from botox injection. Here is her story

My son is 15 and has had ATN and Geneculant Neuralgia for 4 yrs. he’s had two MVD’s ( one on each side ) by Dr Jannetta and he had the DREZ by Dr Casey. He got meningitis after the last surgery and ended up with Hydrocephalus and now has a permanent VP shunt. We live in Huntsville, Alabama, I desperately want to try Botox injections on him. I am having trouble locating a Dr nearby who does them. Do you know of anyone close to here that does this procedure? Vanderbilt, UAB, Atlanta????? He takes large doses of meds that don’t give him much relief. His teeth are killing him and he’s been on Homebound for 4 yrs. I will try anything to help get his life back. In school, and hanging with friends! Thank You, Leslie

Unfortunately, it is not likely that Botox will receive FDA approval for its use in trigeminal neuralgia any time soon. The main difficulty with obtaining such approval is that trigeminal neuralgia is relatively uncommon. While migraines affect 12% of the population and chronic migraine 2%, trigeminal neuralgia only 0.05%.

Hello Dr.,

Will botox ever receive insirance coverage woth a doagnosis pf TN? I otherwise have to take imitrex which causes expressive aphasi, this, iay not ne in pain , bit am still out of comission. When I can afford botox. i have no episodes. Are thete any upcoming studies?
My job as a speech pathologist demands fast thinking etc. Ir is practically impossible to work with TN.
Sincere Regards,

Heather

You may want to check Allergan.com website for doctors who inject Botox for chronic migraines and then call those doctors in your area to see if they are willing to inject for for facial pain. You may also want to check with dentists who specialize in TMJ disorders since some of them do inject Botox.

Dr Mauskop,

HELP! My wife has ATN. She suffers constant, debilitating toothache type pain in her jaw at the site of a tooth extraction, she has referred pain up the left side of her jaw and at the gasserian ganglion.
She’s had tests to rule out infection, surrounding teeth removed, ALL of the meds have been tried with no success.
She has seen many neurosurgeons in the hopes of getting a percutaneous RF rhizotomy, but surgeons only willing to do gamma knife.

Gamma knife had no effect.

HOWEVER, she is able to be locally anesthtatized with lidocaine. Her endodontist was able to relieve her pain with a small amount of lidocaine injected into the peripheral nerve that went to the now missing original tooth. (this only lasted 2hrs).

HOW CAN I FIND A DOCTOR IN TEXAS WILLING TO TRY BOTOX INJECTED into the site of her pain peripherally or in the trigeminal ganglion?

You would have to discuss this with your doctor since he knows exactly what is wrong with your vertebrae, but the injections of Botox for TN are given in the face and should not cause any effect on the neck.

Dear Dr Mauskop,
I am 42 years old and was diagnosed with trigeminal neuralgia when I was 21 years old and have been living with it since. I have had the Janetta procedure done 14 years ago but unfortunatly it did not work for me. I manage the pain with medication. I am thinking about botox but have a twisted vertibrae in my upper neck (3rd or 4th vertibrae down). Would botox still be safe to be injected around that area with a twisted vertibrae?
Thankyou Kathy

Unfortunately, there is no way to determine if the patches slipped or not. You need to discuss this with the neurosurgeon. Yes, the amount of Botox that is needed for trigeminal neuralgia is often less than a third of what is used for migraines.

My teenage daughter had two teflon patches inserted through surgery last year. The procedure did alleviate the pain for a couple of months, but it then returned. I read your comment dated June 4th regarding patches slipping out of position. Is there any non-invasive way to determine if this has happened? Medication has done little to stifle the condition. I have approached her doctor about trying botox. He has used it on migraine patients, but told me the cost is significant due to the amount needed. Just to clarify, you are saying the amount needed for TN is much smaller?

Dear Dr.
I have AD caused from a Gamma Knife Surgery. It is on my right side and mainly in the V3 area. I have constant burning pain. This is inside my mouth, my lips, cheek. The outside area is my lips and my chin and cheek. Do you think the botox would help and where would you inject it. Would it cause any facial doopey etc.
Thanks you
Cheryl

You can try finding a neurologist who injects Botox for chronic migraine at the manufacturer’s website http://www.botoxmedical.com/helpful-resources/find-a-doctor/ and then calling the doctors to see if they would inject Botox for trigeminal neuralgia. Your insurance may not cover Botox for TN, but unlike for chronic migraine, the amount of Botox needed is very small, so the cost should be a lot lower.

I have Trigeminal Neuralgia on both sides of my face. I was just recently told it’s not on the left side. The pain is almost constant, and the attacks of pain last up to four hours, and come at all times of the day and night. I live in northern California and wonder if there was a doctor here that would consider me for botox. The pain is dibilitating and has affect my job and my life. I’m desperate here.

Dr.Mauscop,I wanted to ask you if there is any is any relief for TN by using herbal oils like peppermint or cinnamon or mastic for local rubbing of the trigeminal path?
Thank you!

I’ve treated only a handful of patients with similar pain and for some Botox was very effective, but we do not have any rigorous scientific studies to prove that Botox indeed works beyond the placebo effect. However, considering the safety of Botox, it is worth trying it.

Dr Mauskop,

My wife has had trigeminal neuropathy (of the maxillary branch) following a tooth extraction about 12 years ago. The pain is not intermittent like TN, but constant. She had several sphenopalatine blocks that provided a few months of about 50% reduction in pain. There was an attempt at neuromodulation that failed. She has been tried on all the standard anticonvulants and tricyclic AD’s for pain, most of which were intolerable or ineffective. She has had modest benefit from opiates for years, but still has considerable pain. Do you have any experience in treating a case like this with botox? Many thanks.

Thanks Dr.Mauscop for your prompt reply !! Another question,do you think there is any relief for TN by using herbal oils like peppermint or cinnamon or mastic for local rubbing of the trigeminal path?

Yes, Botox could possibly help trigeminal neuralgia due to multiple sclerosis, although there is not enough research to definitely prove its efficacy. On the other hand, Botox is much safer than most medications, including those used for trigeminal neuralgia. And no, Botox does not cause facial numbness, although it can cause weakness of the facial muscles that are injected, potentially causing temporary drooping of one side of the face. This depends on the amount and the location of injections and the doctor should be able to tell you what is the risk of such weakness.

Dear Dr.Mauscop,my name is Andreas and I am from Cyprus.My wife is 42 years old and was diagnosed with multiple sclerosis in 2000 ,She has been doing quite well up to now with no major ms crises,About one year ago she presented with trigeminal neuralgia on the left side of the face. we tried several medicine combinations and she is currently on Trileptal 300 mg b.d and Lyrica 100 mg b.d. However there is not much improvement of the pain which prevents her from eating,speaking or washing her teeth normally. Our neurologist suggested that she should do the botox treatment.Is it effective in people with ms and would it cause face numbness or other permanent side effects?Thanks !

If Botox is helping I would continue it and to find a doctor who would inject it into the area of the trigeminal nerve. Since you live in Ohio, I would go to the Cleveland Clinic. Also ask the doctor about an occiptial nerve stimulator or a vagus nerve stimulator. It is not surprising that microvascular decompression did not work because it works only for typical trigeminal neuralgia or hemifacial spasm.

Dr. I have suffered from Atypical Trigeminal Neuralgia for 17 years. I have had MVD in 2007 with no relief. I have had every kind of block you can think of with no relief I am seeing a pain management doctor who is doing Botox on me but will not do the trigeminal nerve because he says it is for muscle not nerve so I do get a lot of releif from what he does on me I also have major occipital right-sided pain which is sometimes relieved by the Botox but he won’t do the trigeminal nerve. How can I find a doctor that will do the trigeminal nerve I had that MVD by Dr. JANNETTA and Dr. Sekula and I just don’t know where to go to find a doctor that will do that for me, to you have any suggestions? I live in Ohio Will travel wherever I need to go in order to feel better. Also wanted to add that I went as far as having my infra orbital nerve removed to see if that would help and it did not so therefore I have numbness permanently in my face which was the worst thing I could’ve ever done because I got no relief and have side effects from that. I’m currently on narcotics and Trileptal that does give me about for five hours releif but not long-term relief and I am exhausted with this pain.

Yes, it would be droopy on one side, if it happens, but there would be no numbness.

Thank you, Dr. Mauskop. How long would the “droopy” last on the one side? Also, would I be trading off pain for a feeling of numbness? Thanks, Jan

Botox might help and it should be injected into the area of pain; I sometimes inject inside the mouth as well. There is no chance of Botox causing a frozen face or any other permanent effects. It can weaken the muscles and cause the face look droopy on one side temporarily, but it does not have to happen with a good injection technique.

I have neuropathic pain in the left side of my face due to an endodondist making an injection error. It is constant and been there for over 4 years. Will Botox help with this problem? If so, where might it be injected? Any chance that that the Botox would migrate and I would end up with a frozen side of my face? Thanks, Jan

DR. Thanks for getting back to me. I’ll keep you posted on my progress, this is defintely been hell. Joe, Philly

It sees that Botox did work for your neuralgia – you are “pain and spasm free”, which is great. You may need to have Botox injected every three months until the strange sensation in the area goes away.

Dr. I’m 45, was told at 30 I had TNA, treated with all the drugs until 2004, it got so bad I had a MVD done and thought I was cured. Well the symptoms and tics came back in 2009, they were managed again with meds until this april. My Neurologist sent me to therapy and put me on higher doses, he also said something strange he does not believe it’s my tri geminal nerve, he thinks it is my auricular nerve that is causing me all the, tics and pain spasm. I have had 4 Botox shots 3 in the problem area which is right in front of my ear and one in my neck. my questions is does it take a while for the botox to kick in. I have been pain and spasm free, but still feel weird in the area, and am afraid th e ticks and pain spasm will come back at any time. Joe, Philadelphia Pa.

Kathy,
Can you tell me where you received your Botox treatment? My son (23) has suffered for almost 6 years and we are desperate to find a new treatment for him.
He has had 2 MVD surgeries as well as numerous other procedures including ketamine infusion therapy.

I had a large trigeminal swannoma removed three years ago. The trigeminal pain continued but much less after the tumor was removed. I have complete relief from the head, eye & teeth pain after Botox injections. I require no meds and would recommened this to anybody suffering from trigeminal neuralgia. The Botox lasts about five months.
Kathy, Newport Beach Ca

Yes, I have injected Botox for trigeminal neuralgia with good results, but only in a handful of patients. Only a large double-blind study can confirm whether Botox works for trigeminal neuralgia and in what percentage of patients.

Dear Dr. Mauskop, I have been suffering with Trigemina Neuralgia for close to a year. I have tried almost all the drugs out there with none to little relief. The pain is at the eye area so it covers 2 sections. Have you ever done Botox for a situation like this? Do you have any suggestions or think this procedure would help as I am getting very frustrated with the lack of relief?

In the large series of over 700 patients published by Peter Jannetta, who pioneered the placement of a teflon patch between the trigeminal nerve and the compressing blood vessel, all of the patients whose pain returned had their teflon patch slip out. Putting the patch back restored pain relief. So, it is possible that your relative’s trigeminal neuralgia may improve not with removal but with replacement of the teflon patch. But it would be reasonable to try Botox before undergoing another operation.

Dear Dr Mauskop, A close relative was diagnosed with TGN (lhs) 2years ago. 15 months ago surgeons in Marseille inserted a teflon separator to alleviate the symptoms. For 12months she was able to function normally. 3 months ago symptoms returned and the consultant in Marseille has concluded the teflon separator is now aggravating the condition. They are suggesting to remove the teflon. Do you think Botox injections in this situation would be an effective treatment? Sincerely, Bill Begg

No, none of our patients had bilateral trigeminal neuralgia, which is very rare. Because it is rare there is no research published on this condition, but the same treatments should work – epilepsy drugs and possibly Botox.

Were any of the patients in your study suffering from bi-lateral Trigeminal Neuralgia? I suffer from the condition bi-laterally and have had a very hard time finding any good research info on bi-lateral treatments.