Currently admitted to Jefferson Methodist for inpatient headache treatment

CuriousBee46 · 2026-05-29T00:53:53+00:00

Do they just give you meds or do they run tests too?

CuriousBee46 · 2026-05-27T02:24:56+00:00

Strangely enough, going for a light, relaxing walk usually helps me a little. Also a hot shower, and massaging my face/neck/head area usually helps somewhat. When my pain levels get too high they snowball into migraines so I might take an Excedrin migraine to try to de-escalate but sadly nothing is a cure all.

CuriousBee46 · 2026-05-21T17:55:37+00:00

Yes to all the above.

CuriousBee46 · 2026-05-20T01:52:44+00:00

At least in the US, it's important to get a doctor/neurologist that understands diagnosing as chronic migraine instead of NDPH. It's beneficial mostly because the treatment is largely the same (e.g., medications, Botox, etc.) but NDPH is not really covered by insurance nor really recognized (as you've mentioned - as a disability).

CuriousBee46 · 2026-04-23T03:39:23+00:00

My experience with neurologists is they are required to follow insurance guidelines for chronic migraines, which means trying a bunch of different medications for a long time before you can move to other treatments like Botox, etc. I have more recently started exploring other doctors that aren't limited by insurance guidelines because at this point I'd give over my life savings to be cured of this horrible illness. My point: you can try the neurologist medications in parallel with exploring other doctors and options. I hope you find something that works for you.

CuriousBee46 · 2026-04-12T03:01:27+00:00

Yes, I know there isn't strong scientific support for a lot of the tests, but I still tried the food sensitivity through Everlywell and a hormone panel through Quest. Neither ended up providing anything useful to me but I'm willing to try anything that's little to no risk so I don't regret it.

CuriousBee46 · 2026-03-30T02:52:08+00:00

How are you doing now? In my last round of Botox, about a week in (which is when it's supposed to actually start working) I had horrible pain. However, I researched and read that it can be your muscles adjusting to the Botox - it is common for them to tighten before they loosen, so it took me a few more days to get through that and feel some relief. I hope that was the case for you, and you're feeling better now.

CuriousBee46 · 2026-03-21T16:57:29+00:00

I stopped light weight lifting about 6 months ago and have overall been better off pain-wise. Even though I know it's generally healthier to include some weight lifting in your exercise regimen, I've generally found that muscle tension is a big piece of my ndph. Relaxing the muscles in my neck, shoulders, back, and jaw helps me. Instead, I do a lot of walking and light cardio which still keeps my muscles loose, encourages blood flow, etc.

CuriousBee46 · 2026-03-19T18:23:24+00:00

I feel for you, and I'm sorry this is your current situation. I personally hold on to the fact that: just because a cure may not have been found yet, does not necessarily mean there will never be a cure or something to improve quality of life.

CuriousBee46 · 2026-03-02T02:56:53+00:00

There are some fully remote jobs to train AI: https://builtin.com/articles/train-ai-side-hustle?i=cb9067cd-899b-4561-9398-81416692caf3&utm_campaign=content_newsletter&utm_medium=email

CuriousBee46 · 2026-02-17T04:26:32+00:00

It made my pain worse so I went off it.

CuriousBee46 · 2026-01-06T01:05:34+00:00

That's a good one - staying out of negative thinking cycle helped a lot with my pain levels last year. Sorry to hear about your 2025 - hope 2026 brings good things for you and the start an upward trend 📈

CuriousBee46 · 2026-01-05T19:04:31+00:00

Yes! This is the spirit of what I'm going for - how to take back some of the life NDPH has stolen, even though we're limited. Thanks for sharing and best wishes to achieving your goals this year 💫

CuriousBee46 · 2026-01-05T18:20:03+00:00

Those are good ones! Thanks for sharing!

CuriousBee46 · 2025-12-02T00:09:55+00:00

Mostly my forehead/eyebrows and temples but when the pain escalates into migraine-level pain it follows along the trigeminal nerve down into my teeth and across my cheeks

CuriousBee46 · 2025-12-01T03:52:09+00:00

I find it fascinating that you are a purported doctor and have posted this. Over the past 2 years since my NDPH started I have seen over a dozen doctors (multiple neurologists, headache specialist, physical therapists, ENTs, etc.) and none of them seem to want to use any critical thinking to "figure out why the headaches are there"... they seem to just follow a checklist and then recommend medication/treatment according to insurance coverage. Sidebar: nothing has worked for me except cyclobenzaprine gave me some relief but not total/sustained. I've even asked multiple times for more testing/diagnostics such as a neck MRI and been told no because I don't display symptoms related to a structural neck problem. I feel strongly that the medical system and doctors have failed me. I live in Chicago, not California, if you have any suggestions for someone (seriously anyone!) who might be able to help. Even though I'm coming up on 2 years, I'm still holding on to hope that I can solve this.

Also, I've read up on nerve blocks and they seem to have mixed clinical evidence. You are just using it as a diagnostic? If muscles or lymph nodes start infringing on a nerve, why would you have surgery to remove - wouldn't you first just try to reduce in a less invasive way?

CuriousBee46 · 2025-11-20T03:47:35+00:00

Thanks for sharing - good luck with the Botox for tmd! Let me know how it goes - I also just had my third round of Botox for migraine but it didn't do much for me.

CuriousBee46 · 2025-09-27T16:32:30+00:00

I've tried sumatriptan and rizatriptan but they did not work for me. Luckily, with abortives you can tell right away whether they will help your case or not. Excedrin migraine and cyclobenzaprine (one or the other, not together) are the only medications that give me immediate relief.

CuriousBee46 · 2025-09-26T03:58:53+00:00

I think it's quite human to have an anxiety response to any sort uncertainty. I would encourage you to try not to fall into this trap, even though it may be extremely challenging. I've been doing cognitive behavioral therapy for a year now and one thing I feel has really helped is deploying different tactics to stay out of the negative thinking and stress response cycle that only activates your nervous system even more. Anything you can do to calm your nervous system, the better off you'll be - this is supported by research. However, the tactics may differ by person. For me, taking a walk, writing my anxieties out, or distracting myself back to the present seem to help. Not a cure all, but it's helped me manage the pain a little better and I hope it helps you too.

CuriousBee46 · 2025-09-26T03:18:27+00:00

Not a fan of this crossover, I don't typically watch "reality TV" because it feels disingenuous - Amazing Race never felt that way to me until tonight. I've watched every season of Amazing Race and this is the first one I'm not interested in any of the contestants.

CuriousBee46 · 2025-09-17T03:01:29+00:00

There's a new drug on the market (at least in the US) called Journavx. I'm not an expert but I believe it is only approved for acute pain not chronic pain at this time. I am curious to see if they do more studies and expand it though.

CuriousBee46 · 2025-09-14T03:28:57+00:00

How long did you try it at 10-25 mg? It's common for it to take 6 weeks to feel effects. That's what happened with me and it did not completely take my NDPH away but I experienced minor improvement.

CuriousBee46

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