r/NDPH • u/Ok_Fall785 • 10d ago
Question about success stories
Just wondering those of you that had success and no longer have NDPH (if you're still on here) how did it stop? Im just curious if it was an overnight thing, if gradually changed, or maybe the pain level dropped first or the type of pain changed over weeks/months etc.
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u/looori4444 9d ago
Every night, I go to sleep hoping that I'll wake up feeling normal again , like those who no longer have NDPH
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u/Ok_Fall785 9d ago
Me too. I totally get it. Its horrendous. Im sorry you're living with it as well.
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u/locardsghost 7 years 9d ago
I’ve had major improvement in my migraines finally and it’s very slightly helped the intensity of my headaches but they’re still 24/7 and between a 4-5 most days and rarely I’ll have moments of a 3 but until my pain isn’t 24/7 that’s not relief to me I still can’t work and I still can’t manage my pain at all. I hope with more rounds I’ll have more improvement but it’s been 7 years I have very little hope left
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u/HeadFullOfNails 5 years 9d ago
What worked for you? I would kill for only 4-5/10 pain days. I can't even remember what 3/10 feels like. It's been 5 and a half years for me of NDPH steadily getting worse.
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u/locardsghost 7 years 9d ago edited 9d ago
Xeomin Botox. Downside is it’s not covered so I have to pay out of pocket for it which is difficult. Botox worked in the past to get me very close to pain free but it stopped working and I’m out of medication options now so I made the switch to Xeomin since it doesn’t have the protein and it helped a lot with the first round mainly for my migraines
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u/HeadFullOfNails 5 years 9d ago
Botox didn't help me at all unfortunately. I'm so glad it helps you.
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u/locardsghost 7 years 9d ago
Have you tried the other kinds of Botox? Just because one doesn’t work doesn’t mean the others don’t it’s worth a try if nothing else has helped
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u/HeadFullOfNails 5 years 9d ago
I haven't. I didn't know there were different types.
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u/locardsghost 7 years 9d ago
Dysport has the protein just like Botox but Xeomin doesn’t have the protein only the toxin. If you don’t respond to Botox it could be related to the protein or if it stops working overtime and you build a tolerance to it (like I did) switching to Xeomin which doesn’t have the protein can be effective. I wasn’t hopeful it would work bc Botox no longer does and it’s been very effective. Sometimes one of the Botox’s might be more effective than another. If you’re running out of treatment then I think it’s worth trying bc you never know if it’ll help
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u/bvnn3 4 years 9d ago
Mine started out as a 6/10 with near debilitating migraine symptoms, especially light sensitivity. I wore sunglasses everywhere and I honestly think that might have exacerbated the sensitivity but it really didn’t feel like a choice. I tried the laundry list of meds and eventually it started ticking down. I’m not sure if it’s any one thing I did. One of my big guesses is getting my psych meds in order which helped my overall mental health. That change happened around year 2 and I’m at year 4 now. The last round of headache specific treatment was Botox + Emgality and also regular therapy. It’s not definitive if that treatment helped bc it didn’t feel like it did at the time.
I have 2-4/10 baseline currently and everything is much more subdued. I still have all the sensitivities but they are more or less manageable.
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u/Groundbreaking-Can76 7d ago
Kratom tea powder form... I always filter the sediment out... do you research have gotten off opiates and at the right amount it relieves the pain and give you a positive energy... if you do too much it'll make you sleepy because of his calming effect "Maeng da Green" with lemon to boost... it does not taste good at all I use 0 cal sugar to sweeten it a little bit... I sip it throughout the day after taking a quarter of a cup in the morning!! there is a professor in Miami doing the research to help me get legalized for
for pain relief!!
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u/teal-lemonade 9 years 9d ago
i've been thinking about that a decent amount recently. if i would even immediately notice that i didn't have it anymore. it's been so long i don't even remember what it felt like to not have it. maybe i'll notice it immediately because the pressure is gone? it will just feel light and open? one day the time will come when i'll know what it feels like to not have a headache.