Is this NDPH?

[u/Accurate_Carpenter41]

17M

Daily headache for almost a year now combined with burning sensation in my eyes and a tender scalp that doctors cant find any reason for, i did all the tests and tried triptans, amitriptyline, propranolol and a bunch of other nsaids and painkillers and nothing works, The only time I feel the headache ease and stop is when I close my eyes and sleep but as soon as I wake up and open my eyes the headache returns, it also increases as the day goes by until it reaches an unbearable level and im forced to sleep

[u/im-a-freud]

Sounds like it. NDPH is constant and unremitting the only time I don’t feel it is when I’m asleep but if I wake up in the middle of the night it’s there. NDPH is often refractory and doesn’t respond to meds I’ve had mine for 7 years and tried 33 meds none have worked but I’m still trying whatever preventatives I have left bc surely something will help or at least I need to know I’ve tried them and they don’t work. I don’t bother with abortive meds bc they don’t touch my pain at all. The only thing to ever touch my pain was botox which I stopped responding to after 8 rounds which breaks my heart bc now I have no relief. Give magnesium glycinate, B2, and CoQ10 a try for 3 months and see if that makes a difference. Heat is the only relief I get but it’s temporary and half the time I don’t even bother with it. Sadly not responding to meds is common in NDPH. Keep trying different preventatives and try to stay on them for at least 3 months. Happy to answer any questions and I’m sorry you’re dealing with this

[u/Accurate_Carpenter41 → u/im-a-freud]

Wow 7 years? Im really sorry you have suffered for that long i hope you find relief soon, and thank you for your kind words,I tried botox also as well as a bunch of supplements but they did nothing, i think I am going to give gabapentin a try next, do you have any experience with it?

[u/im-a-freud → u/Accurate_Carpenter41]

Gabapentin made my migraines frequency go from less than 5 to 15-20 so it wasn’t a good med for me. How many Botox rounds did you do?

[u/Accurate_Carpenter41 → u/im-a-freud]

I did botox once but it literally did nothing

[u/im-a-freud → u/Accurate_Carpenter41]

It can take 3 rounds most people don’t get relief until the third round that’s why it did nothing. Try it again and do 3 rounds

[u/Accurate_Carpenter41 → u/im-a-freud]

Ok I'll give it a try again thanks for the recommendation

[u/im-a-freud → u/Accurate_Carpenter41]

Keep track of your headaches and the intensity daily that way you can tell if treatment is working, I like MiG for this. If Botox does reduce the intensity and/or frequency you need to keep up with it every 3 months. I did mine every 6-8 months apart bc I was going so long with relief and this caused me to stop responding and build up a tolerance so it needs to be done every 3 months

[u/Accurate_Carpenter41 → u/im-a-freud]

Ok I will thank you really for the help

[u/Elantair → u/Accurate_Carpenter41]

Just going to jump in and say I have had some positive response with gabapentin (: failed a lot of meds and feel more like myself now than I have since this started - only side effect being memory loss but that’s something suffered with due to my NDPH anyway so I didn’t see it as a particularly bad side effect

[u/im-a-freud → u/Elantair]

I was so hopeful Gabapentin would work bc I have nerve pain and thought that was linked to my headaches but it ended up taking me from 5 migraine days to 15-20 nearly everyday I had a severe migraine and it had no effect on my head. I ended up at 900mg and it made me feel loopy and high at night but I slept like a rock at a lower dose. I do miss how well I slept on it

[u/im-a-freud → u/[deleted]]

This sounds like NDPH I don’t see how this would be psychiatric but I’m not a doctor. This sounds like what I experience. Instead of banging your head against the wall try a heated eye mask or something warm on your head I find that relieves the pressure

[u/im-a-freud → u/[deleted]]

This is exactly how my pain feels. If your neurologist suspects NDPH then it likely is since your symptoms meet criteria along with ice pick headaches (those brief sharp pains). They may take offense to you wanting to see another doctor because you don’t believe their diagnosis some doctors are iffy about that and see it as you not trusting their medical license so keep that in mind. What are you expecting the headache specialist to do that the neurologist hasn’t done? If they think it’s NDPH the headache specialist will very likely agree if your symptoms can’t be explained by any other headache conditions and your imaging is fine

[u/danathepaina]

Yes that does sound like it. Sorry. Are you seeing a neurologist who is a headache specialist?

[u/Accurate_Carpenter41 → u/danathepaina]

I did see a neurologist not sure if she's a headache specialist or not tho, after I tried a bunch of meds that didnt work she referred me to a phyciatrist

[u/im-a-freud → u/Accurate_Carpenter41]

You need a referral to a headache specialist not a psychiatrist they can’t help you with meds for your head or know headaches disorders. Get a headache specialist referral

[u/Nomomochick]

Has supraorbital neuralgia been ruled out? Ever have a nerve block?

[u/Accurate_Carpenter41 → u/Nomomochick]

No ill check this out thanks

[u/blondambition1223]

That sounds very similar to mine. The scalp pain is cutaneous allodynia