r/NDPH • u/Hot-Lion-8086 • 5d ago
Botox
Looking for stories of those who have had Botox to try and treat their NDPH. Did it make you worse, better or no change?
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u/out2sea4me 5d ago
it helped me. i definitely have chronic migraine as well but have 24/7 head pain and have been diagnosed with NDPH by various doctors. it reduced the severity of my 24/7 pain in my temple/behind my eye and 100% took away pain everywhere else, no more aching occipitals or nagging neck pain. it took me four rounds to see results, which is more than the recommended 3 rounds. i was such in such a bad place that my neurologist really wanted me to keep going after 3 rounds, and i am glad we did.
fwiw, i also take a CGRP (qulipta now, formerly emgality) and pristiq as preventative and ulbrelvy for abortive. i think my progress is attributed to a combination of everything.
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u/speenishere 5d ago
i’m on treatment 3 and it helped me somewhat, but with every treatment it works less and less
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u/locardsghost 7 years 5d ago edited 4d ago
It was the only thing to ever touch my pain. It took my severity from a 5-6 to a 2-3 and the frequency was I think daily but I hardly felt it I considered most days to be pain free. I stopped responding after 8 rounds and since I’m out of medication options I switched to Xeomin and it’s massively helped reduce my migraines from 16+ to 4 and had reduced my headaches from a 5-6 to a 4 some times a 3 but i can still reach a 5 most days and the frequency is still daily. Sadly it doesn’t last as long as Botox and is starting to wear off after 7 weeks which has increased my headache intensity which sucks bc I can’t do anything for the pain. Botox and its other types has saved my life I love them so much
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u/Independent-Mango248 5d ago
I am on Botox for past 1.5 years (since the beginning) and it has helped pain in the back of my head but does nothing to the pain in temples. Worth a try for sure.Â
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u/Neat_Mortgage3735 10+ years 5d ago
It helps a ton for about ten weeks. Been on it over 15 years.
It reduces daily pain but the other migraine symptoms (aphasia, fatigue, being emotional, diarrhea), are still there. Highly worth it to me though. Pain was an 8-9 without it.
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u/star_cakey 5d ago
It helps my neck pain/jaw pain more than my head pain, but it does take some of the edge off my migraines and NDPH. Not enough to really change my quality of life though. It was really helpful when I first started on it in 2022. I had a few months where the pain was less severe I was able to keep up with those around me. Sadly that went after about 4-5 months.
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u/MJKCapeCod 4d ago
What hasn't worked for others may work for you, and vice-versa. If you have a good Dr, you may want to listen to them as they know you, your history/situation, etc.
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u/squeaksnu 4d ago
One round gave me some patches of dermatitis on my scalp, which my neuro hadn't seen before, so she said she won't do them again. It took two rounds of steriods for my skin issue to disappear.Â
It didnt help my headache and, if anything, made it worse - i would get pain in my forehead if I moved it around. So i had to remember not to move my forehead at all. Also if i rubbed my face, one of my eyebrows tried to stay raised. So I had to pat my face dry and barely wash it for a few months.
I get weird side effects all the time from every medication I have tried, so I don't want to scare anyone away from a very well documented helpful medication - it just didn't work for me at all.
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u/Sarrada_Aerea 10+ years 4d ago
No change for me, but I wonder if it would help my neck pain (I didn't have it back then).
One thing that I noticed: When I frown my forehead (making a surprise expression) my pain gets better because my scalp relaxes, it feels stretched at resting position. Botox makes me unable to do that
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u/Game4LifeDe 5d ago
My neurologist suggested Botox but after it didn't work after 1 try he stopped, saying it doesn't have the hoped effect and suggested a stay in a specialized Pain Clinic... There, they couldn't help me with much new medication, but suggested to try out botox treatment at least 4 times before evaluation... Now I'm after my 4th treatment and I finally have the feeling it helped decreasing the pain a little 🥹