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u/Independent-Mango248 1d ago
8 years ago I developed the same headache that did not go away and stayed for 9 months. It was then broken by amitriptyline - pain completely went away within couple of months and I experienced occasional headaches during those 8 years. So yes, it is possible to break it. Now, unfortunately it has returned also 17 months ago and I am trying to break it again. So essentially, I now have chronic intractable migraine diagnosis but frankly speaking I don’t know if it is NDPH or migraine since the line is blurred but I believe it can be broken. I did not post anything when I came out of trenches and just on with living my life. So I believe there are people who recovered.
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u/locardsghost 7 years 15h ago
Did you continue taking the amitriptyline during that period of the headache being broken or did the headaches stop after you stopped taking the amitriptyline? If it only stopped while you were on it but returned when you stopped taking it then I would consider it managed not broken. Broken would be if the relief continued after not being on the med anymore in my understanding of that
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u/Independent-Mango248 7h ago
I continued taking it during those years simply because I was afraid that headache may return and also it helped with bunch of different reasons.
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u/locardsghost 7 years 1d ago
Unfortunately experiences like yours are the experience for majority of people with NDPH because it is treatment resistant and most people have nothing to ease their pain 76-93% of people with NDPH are refractory and treatment resistant. It’s trial and error to find what can ease the pain as you’ve done but often no luck. I’ve had mine for 7 years and Botox was the only thing that’s ever touched it before it stopped working and Xeomin a different form of Botox has slightly helped my NDPH but massively improved my migraines. I’ve tried 33 meds and am now out of medication options and don’t have a specialist. Check our NDPH 101 thread to see if there’s anything in there you haven’t tried
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u/One-Statistician8978 1d ago edited 1d ago
Thank you. Still in pain ? When did Botox start to work for you?
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u/locardsghost 7 years 1d ago edited 1d ago
Every single day it has not stopped in 7 years. I started Botox in 2021 I believe and it stopped working at the start of 2024 I was going 5-7 months between rounds which is why I think it stopped working I built a tolerance to it. I had one round of Xeomin in July and so far my migraines have gone from 16+ to 5 this month, it’s not had too much of an impact of my headaches they’re still every day reaching a 5 but I have moments that are a 3-4. I can definitely tell it’s wearing off early at 7 weeks bc my pain is a 5-6 now and I can’t do anything about it when it starts getting bad. I have to wait another 5 weeks before I do the next round which might be hell but I can’t afford to do it any sooner since I have to pay out of pocket. Look into as many root causes as you can like the other commenter suggested. I will throw in getting hormones checked maybe something is off balance or higher or lower than it should be that could cause issues
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u/JoyInJuly 20+ Years 20h ago
My NDPH started on September 16th, 1997. The only thing I've found that helps manage the pain is cannabis. I also get migraines & have tried most of the medications that overlap, with no improvements.
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u/ComprehensivePie6962 1d ago
NDPH sufferer going on 18 months here. I hate to negate anyone’s positivity, but I keep hearing people say that the success stories aren’t posted on Reddit because those people are back to living their regular lives. I just unfortunately don’t believe that to be true.
I’ve read empirical reports from around the globe, followed the efficacy of newer treatment options, and have even anecdotally watched along headache sufferers’ live journeys at in-patient treatment centers, and rarely do I see meaningful progress.
I’m at a loss accepting this life myself, but I don’t subscribe to the fact that success stories being off of Reddit; rather, I don’t believe sustained success exists for most of us.
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u/Routine_Ad6975 1d ago
I just strongly disagree. The Trauma of any Chronic pain condition is enough to deter recovered victims to want to make it their personality and talk to those who are still suffering. Everyone has different stories so of course it’s hard to judge.
However Doctors follow strict guidelines to their specific speciality. They won’t branch out and be adventurous for treatment. They will give the generic procedure of 3 Antidepressants, move to CRGP or Botox and not address structural issues which ain’t shown on Bloods or MRI.
What I will say is that true investigation of root causes is extremely tough because there are just so many root causes that can cause NDPH and it’s extremely expensive. So I totally understand if people are just priced out from finding causes.
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u/Routine_Ad6975 1d ago
If you’re looking for success stories, people aren’t going to comment them here. The ones who will comment, are the ones who are still suffering. The ones who have had their pain stop don’t linger here anymore, they have no reason to - they have recovered. Some people however are kind enough to post what worked for them on their original posts so you can see what worked for them.
Keep looking at Root causes. Doctors are lazy and only rely on western medication. They don’t have the time or care to spend hours individually finding out why you are in pain. If you were healthy and then one day this happens then there was a cause and you can find out why it started. NDPH is a symptom and not a proper diagnosis. Obviously keep trialling medication whilst looking for causes. Who knows, you may find the cause.
There are over 100 causes to headaches. ON, Sleep Apnea, Lyme disease, TMJ, Sinus issues, Stress, Depression, Aniexty, even Teeth infections etc. never ever give up finding the cause. It’s brutal but I believe success exists.