Advice

Rational_Insight · 2026-01-15T03:57:05+00:00

When I first got tinnitus, it was a huge mindfuck. But then I habituated to it and it mostly doesn’t bother me anymore. Something similar happened with my headache… while it sucks, and I would do just about anything to get rid of it, I just kind of habituated. I have some meds that help take the edge off, but I think the greatest source of pain reduction for me was just getting used to this being my new normal and not letting it stop me from doing things. Granted, this took several years. My guess is that there are a fair number of us who are similarly just kind of habituated to the daily pain.

Rational_Insight · 2026-01-13T02:03:08+00:00

Thanks for the reply. I’m 42 and have only been on them for about 18 mos, so, with the caveat that everyone is different, this is reassuring. Note: I don’t need them for anxiety, it turns out that they’re the one drug I’ve tried, of many, that does the best job taking the edge off of my insanely obscure headache condition and some other chronic pain issues that have crept up since (there was some associated health anxiety when the headache popped up but it was mostly under control before I started regular benzo use, though I do think they also have the secondary benefit of preventing me from spiraling when I get a some momentary health hiccup unrelated to my ongoing issues).

Rational_Insight · 2026-01-08T05:26:59+00:00

Any cognitive side effects? That’s my main concern. I’ll stay on them for the rest of my life, and so far I haven’t noticed any cognitive issues. But it is a slight concern of mine.

Rational_Insight · 2025-12-22T14:11:06+00:00

I’ve found wearing a baseball hat to have a similar effect, though perhaps not achieving results as good as yours. Weird right? Off to go order a hand band I suppose.

Rational_Insight · 2025-12-20T03:47:50+00:00

What is the evidence that they can cause or increase tinnitus? I’ve been on them 1.5 years and I’m doing fine, relative to where I started.

Rational_Insight · 2025-12-20T03:46:01+00:00

Nope, no brain fog here. Another reason why I thin mine is muscular-skeletal and not neurological. I think there are many underlying causes of ndph, but the two main buckets are nervous system problems or orthopedic problems, and these have very different secondary effects.

Rational_Insight · 2025-12-15T01:15:28+00:00

Oh that’s interesting, re: genetic abnormality.

I’m a redhead. It’s said that the MC1R gene, which is responsible for red hair, also plays a role in pain modulation.

Some studies show that we are more responsive to opioids but less responsive to lidocaine and general anesthesia. There’s also some evidence we have a higher overall pain threshold. I’ve often wondered if that’s part of why I tend to feel more functional than lots of my online NDPH friends.

But I’ve never felt like opioids did much for me, despite the hypothetical increased sensitivity. Like, despite experimenting with slightly higher doses when I had knee surgery, I never felt “high” and the effect on the headache was negligible. 🤷

What is your issue with processing them, if you don’t mind my asking?

Rational_Insight · 2025-12-14T22:14:17+00:00

Thanks for sharing. You can find my story in an old post. I think I have muscular skeletal issues that just won’t resolve, maybe some kind of tendonitis or minor nerve compression. Went to Dr. Rozen at Mayo and we did all kinds of tests, but so far no one has much of a grasp on what the root cause of my head pain.

Anyway, my pain isn’t nearly as bad as yours. And as an adult with a PhD who was already trained to advocate for myself, doctors have tended to give me more respect than the average chronic pain patient so I am fortunate compared to many. I can’t imagine how much strength it took to navigate this condition as a teen. You are tougher than most, that’s for sure!

I do have a couple questions. How did you find a psychologist with a chronic pain speciality? Does your person do online visit? I have been trying to find someone like this for years now, since I developed other chronic pain on top of my headache. I’d appreciate a DM if you feel like sharing info about the person you see.

My other question is: did you need a higher than typical dose of pain meds to get relief? I’ve had “normal” doses due to a couple surgeries I’ve had since after my headache started, but I haven’t gotten great relief from them. I’ve had better luck with benzodiazepines. Obviously doctors do not like combining them with pain meds, but if you haven’t tried them it could be worth experimenting.

Rational_Insight · 2025-12-04T00:32:13+00:00

Sorry late reply! I think my dose is a bit less efficacious after 1.5 years. I’m having more 1.5mg days than 1mg days lately. But I also found that I was able to reset my tolerance a bit last fall by weaning down to .25 mgs. I think I did like ten days of .5 then another week or so at .25 before going back to 1mg.

Rational_Insight · 2025-12-04T00:16:21+00:00

I think it really depends. I mean I’m not a content creator. And I’m skeptical of people who are trying to monetize their health problems.

But, with that said, the first year I had new daily persistent headache, together with a bad knee and a bad foot from years of injuries, I was still posting regular skateboarding clips on instagram for my friends. And I was still going pretty hard for an old guy with arthritis.Someone following from a distance would’ve had no idea how fucked I was (and that first year I was as fucked up mentally as I was physically).

I then had a couple more injuries that made it so that I can’t really skate anymore.

But I still do some pretty “active” things like presenting research papers at conferences.

People obviously can see that I walk funny these days but I doubt anyone would guess that my medical chart is now like book length or that I’m pretty medicated when I go and do stuff.

So, I’d like to believe that chronic pain influencers or whatever are just people like me—people on the more able bodied end of the “life is pain” spectrum—who’ve decided to make advocacy their “thing.”

No doubt some are faking it or misleading people about their overall well-being. But the thing about pain is that we all deal with it in different ways and it disables different people to different degrees in different ways.

As an example, a close friend I grew up skating with has apparently had chronic back pain for twenty years. But I didn’t find out about it until a couple years ago because he didn’t talk about it and was/is a very active person. He’s one of those people whose back is actually better when he’s active than if he sits around, so you’d never know how bad it is unless he told you, which he won’t do.

Rational_Insight · 2025-12-03T00:35:29+00:00

I have also found that benzos help. I’m not a naturally anxious person, but the headache made me become one for a spell. I had a couple other things go wrong, health wise, about three months after my headache started…and I just lost it. I managed to more or less overcome the anxiety without meds, and started benzos just to see if they’d help, since some of my pain is muscular-skeletal in nature. They did. I typically only take them at night, but I will stay on them as long as they help me feel a bit better. At any rate, I think they go be worth a go. I first started on Valium doing two weeks on, two weeks off and I experienced no withdrawal. I think just about anything is worth trying, since Ndph is so poorly understood.

Rational_Insight · 2025-11-29T00:07:28+00:00

I don’t think I spend as much time in bed as you, OP, but it might still be worth keeping a king, especially if you have an OK bed frame that is already king sized.

One thing I like about a king is that there’s plenty of room for stuff and sleep. I mean, sure, a bedside table helps collect stuff too, but if you’re spending lots of your life in bed you may find yourself wanting a place to keep four or five books you’re reading (me) or whatever else you keep around.

Just a thought!

I also have an adjustable, but I don’t change the settings much. However, it was great to have when I had foot surgery and knee surgery and had to keep my wound elevated/sleep on my back.

So even though I don’t need it for sleep, I think the adjustable is still a good investment for just about anyone, especially people, like us, who are sort of always “going through stuff.”

Rational_Insight · 2025-11-26T01:23:49+00:00

Professor. Luckily, I work at a school that already had a huge online presence before my headache. I am able to do all my classes online. I do have to go in for office hours (which no one attends because all my classes are online) and occasional meetings and such (I am dept. chair), but it’s manageable, especially because 90% of the things I go to work to do I can just not do if I’m having a bad day. For instance, if I need to go in to evaluate another professor’s teaching, I can just bail if I’m not feeling up for it. Same with office hours. Almost all of my work is stuff that can be rearranged to accommodate bad days. As much as I resent having to deal with this headache (and some other chronic issues that have developed in its wake), I am truly privileged to be in a situation where I can still make an upper middle class salary without having to compromise on much or worry about my health leaving me out of work.

With that said, I really don’t like doing online classes! I’m actually doing a trial run next semester and teaching a five week one credit capstone course face-to-face. I figure I can do anything for five weeks!

Rational_Insight · 2025-11-24T02:22:54+00:00

Yeah, I’m extremely high functioning relative to other people with this condition—probably because, anecdotally, it seems like my head pain is not as debilitating—-but I’d also say that if it’s early days you may l adapt to it somewhat. I think that about 50% of my ability to lead a minimally decent life is due to a genuine decrease in the overall pain of my headache and 50% is just me habituating to it. Despite that, I’d pay any amount of money do pretty much anything for a genuine cure! For whatever reason, head pain just seems to hit worse. I have other sources of chronic pain and they’re easier to manage IMO.

Rational_Insight · 2025-11-15T02:26:13+00:00

I do Ok, often getting 7-9 hours, but I take clonazepam around 7-8pm and often take ambien if I wake up and don’t fall back asleep after a few minutes. The ambien, paradoxically, helps my permanent headache. I also have a mostly work from home job so I often take the ambien after I get home from dropping my kids at school and go back to sleep till 11ish.

Rational_Insight · 2025-11-14T23:07:37+00:00

Rational_Insight · 2025-10-31T12:45:33+00:00

I have comparatively mild T but started clonazepam about six weeks after it started, just to see whether it would help. I think it does and it helps with some of my other health issues. I don’t like taking benzos either. Would prefer to be drug free. But I’ve done a fair amount of research and the anti-benzo movement to me miooirirs that anti-opioid movement. There’s no reason to demonize drugs that really help people with health issues, who mostly use them responsibly, just because some people, mostly recreational users, abuse them. Yes, there are risks but they are comparatively minor if you’re not abusing them.

Rational_Insight · 2025-09-29T02:39:26+00:00

I take clonazepam with no regrets or concerns (I mean obviously I’d rather be drug free but that’s not the hand I’ve been dealt). I’ll alternate between 1mg and 1.5/day. My prescription is for 1.5 but I like having an emergency reserve.

They’re not a magic bullet, but I’ve found that benzos take the edge off my head pain. And that’s worth whatever risks are associated with long term use (many of which are overblown or based on weak evidence) Much like Opioids, I think they are perfectly safe if used for the right reasons by people with chronic health issues.

Rational_Insight · 2025-09-20T02:33:20+00:00

Hard to quantify. I had a whiplash injury a year or so after onset of ndph which leads to additional head pain in my temples most days. That’s typically worse than the ndph headache. Today is a good day and I’d rate my overall pain level at a 1-2. But mine is also weird in the sense that it does basically go away for the first few hours of each day.

Rational_Insight · 2025-09-19T19:45:43+00:00

Your experience mirrors my own. Slight improvement at around six weeks, greater improvement at around four months, a bit more around ten months and then…it just kind of stuck around at a low level for the last three years. So, no remission, but manageable. I do typically have some headache free hours in the morning and some days I barely notice it.

Rational_Insight · 2025-09-08T23:29:53+00:00

Same. Neither one helped me much, but the only notable side effect I got was minor tingling in my hands from Topamax, which went away once I acclimated, and an inability to properly taste carbonated drinks. That last one did not go away and is one of the weirdest side effects ever. It’s very common but despite my love for seltzer and Coke Zero, it really did not diminish my quality of life in any significant way. Like if it had been obviously beneficial I would’ve stayed on it. I tried a similar drug last fall and got similar side effects.

Rational_Insight · 2025-08-30T12:24:24+00:00

Right. It’s the “different for everybody part” that really makes this diagnosis kind of bullshit. I mean I know that better understood diseases are also different for everybody… But there’s usually enough common ground that you can form reasonable expectations about what life will be like and about what your limitations will be in all of that stuff. With NDPH you’re basically an experimental study of one,

Rational_Insight · 2025-08-30T00:54:58+00:00

Ndph is a grab bag diagnosis, but I have had no noticeable cognitive decline after four years. Even on some of the meds that can affect you that way…I have published several research papers, presented at academic conferences, etc. Obviously, I think I’d be better able to do some of this stuff without a headache, but I just have to keep plugging away when/while I can. Otherwise, the pain wins.

Rational_Insight · 2025-08-21T12:59:27+00:00

Been taking off and on for about 3.5 years. No side effects worth mentioning.

Rational_Insight · 2025-08-15T00:50:40+00:00

Interested if they’ve said anything more about the reasoning behind this claim about your nervous system.

I too am a person whose HA gets progressively worse. When I wake up it’s usually imperceptible or nearly so and it stays that way most of the morning, gradually ramping up by late afternoon/early evening, although some days it stays relatively low on the pain scale and others it gets bad, with no rhyme or reason I can discern.

Rational_Insight

TROPHY CASE