I have TN2. Has anyone had Botox for it. If so did it work, how long did it take to work and did you have any side effects. Thanks.
I have had Botox. It can only be applied every 3 months and it is generally covered by insurance if it is used for Migraine headaches. It is cumulative so it takes a few months to have full effect. It varies by person. My experience has been great. It takes about 1 to2 weeks to have an effect and it ends before the 3 months is up.
The side effects depends on the person. It could affect eyes, stomach as well as bladder. It is different then cosmetic Botox as one is under the skin and the other is inter muscular.
Good Luck, Michael
I’ve had TN for 17 years, tried MVD, Gamma x 2. I have not tried Botox bc my neurosurgeon was against it. I did go for percutaneous rhizotomy on May 4th 2023. It was a pretty simple procedure , out patient. So far I’m not having pain like I did. I’ll keep you posted on my progress. Good luck, living with this pain is awful, physically and mentally. I hope the Botox works for you.
I tried Botox many years ago. I have TN 1&2 and ATN…I didn’t have any reduction in pain. It did stop hemifacial spasms, which was nice…I hope you get some relief. Please keep us posted.
" It varies by person." Is accurate My experience after 3 weeks was no relief, but my left eye lid crashed for a month. I have had ATN for 12 years and have tried many things. You should because " It varies by person."
See my long reply under Larry2.
I have TN but I don’t know if it is 1 or 2.
I was first diagnosed in 1999. I currently use Botox and Emgality to treat migraines. The combination has been used since January 2023. So far, I have no problem with migraine pain.
I wish there was one solution that fits all; but it doesn’t seem to work that way.
Just keep trying until you get the right neurologist with the right treatment plan that works for you.
I’m sure you’ll find it.
The National Organisation for Rare Disorders references type 1 as:
TN type 1 (TN1) is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and/or other areas on one side of the face.
They reference type 2 as:
TN type 2 (TN2) is characterized by less intense pain, but a constant dull aching or burning pain.
Some patients can have symptoms of both 1 & 2 occur together.
There is another diagnosis known as ATN or Atypical Trigeminal Neuralgia. Depending on the medical opinion (or who you talk to) TN2 and ATN are the same thing. Some are of the opinion that ATN has traits of both 1 & 2. Some are of the opinion ATN has it’s own set of symptoms.
I too was given a diagnosis of ATN as my symptoms don’t fit just with one or two. My diagnosis was post neurosurgery and the trigeminal nerve was bound to be disturbed/severed during surgery. I can have a stabbing pain (type1) that’s constant (type2) directly behind my right eye, seems this is not ‘normal’ for TN, so the diagnosis was ‘…must be ATN…’
The neurologist professed about this fantastic treatment. They shot me full of botox over a period of about 9mths (every 3 months), neck, shoulders, back, and face, 30 shots each visit. I didn’t have a headache when I went there, but I sure had one, sent from the gates of hell, when I left. There was no way I could drive home after treatment. But after 9mths, I may have had a wrinkle free neck, shoulders, back, and face but the headaches hadn’t improved. The neurologist who administered the stuff was annoyed with me “Well, it’s worked for everybody else. It must just be YOU…” I was not happy.
I completely agree. This is not a ‘One-size-fits-all’ type scenario.
Merl from the Modsupport Team
Thank you for responding.
Does the Botox help with your TN?
Yes. Botox definitely helps a lot with lessening the pain. It is administered once every three months. Its effect starts to wear off the closer it gets toward the end of the 3 months.
Emgality is used every month.
Together, I just don’t get migraines anymore.
Botox has helped me, but it takes several treatments to get the full effect so it took me a full year to see it actually work. We have been doing this since 2016 for me and not necessarily life changing in terms of management but boy do I once when it is time for my next treatment. I get it over the entire head and down my neck. I am not convinced the neck is all that crucial but I definitely tend to hunch when I have attacks so I go with it.
It lasts about 9 weeks for me including the first week to take effect. I always get a pain treatment when I’m there with a mix of immediate pain relief (toredol usually) a muscle relaxer, a mix of vitamins, magnesium, and sometimes other things based on how miserable I am from the previous weeks of being out of effect. We are trying Dysport now for the longer effects and we have added in an alternating Vyepti infusion in the middle between the injections. I also do a post treatment of warm compresses and or cool. I can’t do too extreme in either direction but it helps.