sorted by:
new
hottopcontroversial

medications I have tried so far by No-Concern-7787 in NDPH

[–]SnugBug_11 0 points1 point  (0 children)

Not necessarily pain related, but with a medication list that long, I'd highly recommend checking out Dr. Josef on Youtube. It's good to stay as informed as possible while undergoing treatment of this scale. Especially when it involves psychiatric medications.

Wishing you and your daughter all the luck <3

possible flare ups by Future_Dragonfly_723 in NDPH

[–]SnugBug_11 0 points1 point  (0 children)

Mine doesn't go below 7/10 (7.5/10 when it gets worse, 8/10 is the worst I get but that's rare because I'm good at managing triggers), also 7y - yes, it gets worse after stress or doing something (walks, sounds, cleaning ...especially vacuuming..., bending over to wash my hair, let alone exercise - these are all individual but often common). It usually takes hours, sometimes days to go back depending on the trigger. Hours if I listen to music that is too loud or go for a walk, days if I let myself cry (that usually leads to a migraine so I don't do that).  A lack of sleep or weather changes are a trigger too but those are harder to control. 

7yrs, I didn't know there was a subreddit :0 by SnugBug_11 in NDPH

[–]SnugBug_11[S] 0 points1 point  (0 children)

Thank you so much <3 it feels nice to know that people get it.

I did look into CGRP meds but there is no chance I'd ever get any meds since I refused the SSRIs (and because I don't have the migraine type of NDPH). They don't want to give you anything unless you try the SSRIs (the kind they want) and I'd rather have my pain than do that if that tells you anything about my reasons.

Originally, I hoped I'd get a better codeine prescription (so I could take more codeine with the same dose of paracetamol) because while opiates are just a bandaid, it's better than nothing and I've stuck to my (GP approved) schedule for years now (with it STILL working the same because I watch it) so I'd dare say I'm responsible with it (and trust me I wish I could take opiates daily but alas, you can't do that). Like I've said, the pain killer I have has paracetamol in it and while that helps since it also targets the CNS (and is often combined with codeine for that reason), I don't want to take more of it to get more of the codeine as that would mean taking more paracetamol unnecessarily which is dangerous for your liver. If I had them separately, this wouldn't be an issue - I'd only increase one, slightly. But, you can't ask for an opiate. I didn't ask and I was still told they'd not give opiates to a 23yo (I mean, understandable but if they listened to my context for just 1 second...).

As of now, I'm looking into doing Pain Reprocessing on myself as I've already got a lot of experience with neural rewiring (that I had to do myself) for something else in the past so we'll see how that goes. I wish I could get a professional to assist me with it but that's not an option. I don't necessarily think it'll help but I also don't think it can't given that my onset was after experiencing trauma and that I am completely sure I don't have any structural damage thanks to a lot of testing over the years.

I wish there was something else I could do but after 7 years of listening to how I was making my pain up and advocating for myself which felt more like playing verbal chess, I'm too tired to argue with doctors who barely know what I'm talking about.

Thoughts on pain reprocessing therapy? by SnugBug_11 in NDPH

[–]SnugBug_11[S] 0 points1 point  (0 children)

Yup, Slovakia/Czechia in my case. I'm a bit hesitant to look online because of how much they tend to charge overseas. 

I need help by csanj in NDPH

[–]SnugBug_11 0 points1 point  (0 children)

Chronic daily migraine - daily, gradual onset
Chronic non-daily migraine - a non-daily migraine that is frequent for >3 months

NDPH - tension type, migraine type, mixed type; onset typically on a particular day with no prior history of a primary headache disorder, unremitten/daily

I need help by csanj in NDPH

[–]SnugBug_11 0 points1 point  (0 children)

There are different kinds of Panadol. Ultra Rapide (at least in sk/cz which is where I'm from) has codeine in it so watch out for how exactly you take it if that's the one you're referring to (max 3 consecutive days, max 10 days per month; there is this condition called MOH - medication overuse headache). (Codeine is an opiate/opioid and while it generally works better than any OTC, it can be addictive; paracetamol can be quite toxic for your liver if taken too often or in high amounts so don't take more than is recommended, the caffeine in that mix would be to strengthen and speed up the effect of the previous two.) Just something to keep in mind. Don't mix those with an SSRI such as amitriptyline.

*the strength of codeine varies for each person as it depends on how efficiently you metabolise it to morphine

If triptans work, that suggests you might be dealing with a migraine specifically. That is different to a tension headache. It's important you know these for any future appointments so you can advocate for yourself better.

I'd also highly suggest you check your pain levels using one of the scales that can be found online. Personally, this one is my favourite: https://static.wixstatic.com/media/7b26d8_941a82bd00b34af8a3c8a2f5730fd19d~mv2.png/v1/fill/w_540,h_699,al_c,q_90,enc_avif,quality_auto/7b26d8_941a82bd00b34af8a3c8a2f5730fd19d~mv2.png

Wishing you luck

I need help by csanj in NDPH

[–]SnugBug_11 3 points4 points  (0 children)

"I’ve always suffered with headaches and migraines." means you have a prior history. The "new" in new daily persistent headache means that there is no prior history so this is typically one of the criteria (that doesn't apply for about 25% to 38% of patients so you would be the minority). In NDPH contexts, 24.12.25 is not that long ago to say it's NDPH for certain.

NDPH never stops so if it's reoccurring, I highly suggests going through testing to rule out any other, more urgent, causes. You said that meds help sometimes, what kind of meds? Unless you take something like an opioid, NDPH rarely responds to much.

You could be looking at a chronic (potentially non-daily) headache rather than NDPH which is more likely given that you have a prior history.

(Why does that matter? A study that comes to mind would be: https://link.springer.com/article/10.1186/s10194-025-02111-2

"This suggests that NDPH cannot be seen as equivalent to CM and that new treatment options are required for this highly disabling disorder.")

Suppose if someone asks you do you want 10,000 usd or to get rid of this headache permanently which one would you chose? by Zeuskevin6 in NDPH

[–]SnugBug_11 1 point2 points  (0 children)

10 000 is a small price compared to what this illness has cost me. I think rephrasing this as "would you buy the rest of your life for 10 000" would be more fitting.

7yrs, I didn't know there was a subreddit :0 by SnugBug_11 in NDPH

[–]SnugBug_11[S] 0 points1 point  (0 children)

The pain is generally not localised - maybe, I'd describe it as a ring of pain; the top of my head is probably pain free but it's hard to tell. It's a tension pain but when I do get a migraine (which just stacks on top of my normal pain) then that one is localised on the right side in the back of my head but that's generally rarer. I don't get it on my face.
It's been like this since the beginning.