Botox for trigeminal neuralgia: additional case reports
Several of my patients with trigeminal neuralgia (TN) responded to Botox injection (although some have not). My previous post on this topic four years ago discussed a study involving 40 patients with TN, of whom 68% responded to Botox. Recently, two new cases of TN successfully treated with Botox have been reported and in the past month I’ve treated three additional patients. Two of my patients had excellent relief and one had none.
One of the case reports was presented at the recent meeting of the American Headache Society in San Diego. This was a 65-year-old woman who suffered from very severe electric shock-like pain typical of TN. She did not respond to a variety of medications, including carbamazepine (Tegretol), but did respond to Botox injections. Botox did not eliminate her pain, but the severity of it was reduced by 50% and this significantly improved the quality of her life.
The current issue of Headache contains a report of a 60-year-old man with severe TN who also did not respond to any medications. He did obtain complete relief from Botox injections and Botox has remained effective for over 2 years.
With any new treatment we usually hope to see large double-blind controlled clinical trials and eventually an FDA approval. FDA approval usually compels insurance companies pay for the treatment. Botox injections have received approval for chronic migraines, excessive sweating, twitching of muscles around the eyes (blepharospasm), and several other conditions. Unfortunately, it is not likely that Botox will receive approval for the treatment of TN because it is a relatively rare condition, which will make it difficult to conduct a large blinded trial. Fortunately, the amount of Botox needed to treat TN is much smaller than what is used for migraines, making a little more affordable. We use 100 to 200 units of Botox for chronic migraines (the FDA-approved protocol calls for 155 units injected over 31 sites) and only 20 to 50 units for TN.
Thank you very much for your reply. Clara and I visited your clinic this morning and booked an appointment to see you this week (Thursday) and discuss her case.
We are looking forward to meeting you.
Kind regards,
Valeria
Yes, I would be happy to see Clara, give her Botox and possibly make some suggestions. After the visit, I am available for telephone or email follow-up consultations.
Dear Dr Mauskop, my 20 year old daughter Clara,has been suffering from headaches for 1 year and a half. She had many appointments with GPs, Neurologists, orthopedist, Temporo Mandibular specialist, etc. Also, had 2 MRI, X-rays and all the possible exams. All the exams are fine and nothing seemed to have worked, except 2 botox treatment she had last year in Brazil, in September and again in December. Since the botox expired in mid March 2016, Clara has been seeking different alternative treatments with magnesium tablets, feverfew and also is doing acupuncture with a well recommended Chinese Doctor here in London,which she had a little relief in the first weeks but the pain is back strong.
We don’t know what else to do to help our daughter and as we are going to be one week in NY I was wondering if it would be recommendable to visit your clinic in case you think you could help her. The problem is that we live in London and in this case I am not sure how it would be possible for any possible treatment in terms of continuity…
Many thanks in advance, Kind regards, Valeria
Among the alternative therapies, which can help pain and headaches, I would consider magnesium, Boswellia, and alpha lipoic acid supplements, as well as acupuncture and meditation.
Thank you for your quick reply. Any other suggestions for me to consider? It has been 26 yrs of (relatively brief) periods of acute pain with the more consistent (chronic) burning and at this point in my life, I’m considering other alternative solutions. Maybe I just have to learn to live with it – but how? /k
There is no way to know if Botox is going to help because there have been no controlled studies of Botox for this type of pain. Because this condition is rare, it is unlikely that such studies will be done in the near future, if ever. However, considering that Botox is very safe and appears to help other types of pain, it is definitely worth trying. The main obstacle to using Botox for chronic migraine is its cost, but you may need a relatively small amount – probably less than half of what is used for migraines.
Have you ever heard of Botox relieving neurotrophic pain (the incredible burning, tingling, prickling feeling) resulting from treatments FOR trigeminal? I had MVD in 1990; followed by glycerol rhizotomy in 1991; and RF in 1993 – that left majority of right-side of my face numb (including cornea). All has been relatively stable till 2008, then increase in TN pain – so another RF followed by Gamma knife procedure. Recently (past year) neuropathic pain is increasing from daily level of 2 to 8-9. Does not feel like TN pain; not penetrating electric-shock style. More incredible burning. My PCM thought it sounded similar to (diabetic) neuropathy so she wondered if Botox would help. I was sent to a neurologist and he said it wouldn’t. But I question because he also said Botox isn’t used for TN either. Suggestions for treating (at least reducing) the neuropathic pain?