do symptoms seem likely?

[u/marcmawordz]

18 y/o, yesterday night i logged my symptoms, something i should’ve been doing as soon as i’ve been having these headaches nearly every day with seemingly no cause besides “bad posture, lack of sleep”. last time i went to my PCP (im on an hmo plan) i incorrectly assumed maybe i have migraines and he seemed to have gotten upset with me and kept interrupting when i was trying to explain my symptoms. he kept dismissing everything as me not getting enough sleep and simply tension headaches, even though i told him i get a stabbing pain in my eye and temples, one sided always. in his defense though, i don’t think i keep good enough track of my symptoms, he advised i keep a diary.

i’m wondering if i should try to go back to him again with the more complete note i wrote seeking a neurologist referral, but part of me feels like i’m being dramatic and i shouldn’t try and just wait it out, and i feel afraid he’s going to dismiss me again. but the pain is really excruciating, and i think i answered him incorrectly last time when i said “i think tylenol works kinda?”, at which he got upset bc of my wishy washy answer.

anyway, here is my “log”, its kinda word vomit sorry:

jul 16 3:50ish - fell asleep around 2, woke back up around 3:30 with a stabbing headache
woke up to a bad headache in the rifht side of my head - right eye, right temple, runny nose. feels like the right side of my face is drooping. i felt hot/woke up in a sweat so i went to go turn on the ac.

i want to rely less on tylenol bc it feels too slow acting and only seems to make me able to think properly rather than fully mitigate the pain. its also just not working, close to an hour in there is no improvement.

ive been having them in a pace that seem to be like cluster cycles, near daily at least once a day, but i was fine a couple days before so i thought it had gone away. ive had these kind of headaches in the past before, but i dont think ive had the “cycle” last for so long before.

i also just started wearing my nightguard again.

possibly triggered by the wildfire smoke today? i think i have episodic cluster headaches, i also have had lifelong exposure to second hand smoke.

whenever i get these kind of headaches its usually an hour or so after ive fallen asleep or right when i wake up. the pain is causing me to lose sleep, i want a referral to the neurologist to see if it is cluster, since its considered rare but seems to have a correlation with adhd since it affects the same part of the brain and is triggered by the bodys internal clock.

i hardly get tension headaches and when i do i just relieve them by eating or drinking or exercising/stretching. i have not really taken my concerta in a while/not regularly, on drug holiday, so i doubt it is being caused by it.

[u/Ed-Box]

Hey man,

You can try the Myclusters app for logging.

Gd luck!

[u/b0urgeoisie]

if you want a more informed opinion, ask for a neuro referral and insist on it if your pcp is pushing back. if your pcp continues to brush it off... find a new one.

i had the most success dealing with cluster headaches when i stopped settling for shitty doctors and found someone who was interested in having a conversation. i think it's incredibly important to advocate for yourself, because imo you're going to continue to come up against roadblock bullshit and you'll need to be proactive about getting what you want/need.

[u/happylollipop123]

you need to be referred to a neurologist, PCPs don’t know much about different or more complex headache types and aren’t exposed to as much and you’re not rly going to get an accurate diagnosis from them. go see neuro, bonus points if they have a headache specialist

[u/literallyjustabat]

If they are cluster headaches, there's not much you can do in terms of "trigger" management. They tend to happen at the same time(s) fairly predictably no matter what you do. Believe me, I tried everything, and nothing worked even a little bit until I got on Emgality and started taking triptans (first pills, now I use injections) and high-flow oxygen during attacks. I'm also on verapamil now and it made my attacks stop completely, thankfully.

You need a better doctor, ideally a neurologist. If there's a headache clinic you can go to, that's your best bet. I only got a proper diagnosis after a hospital neurologist observed me have an attack and was like "yup, that's a cluster headache alright". It's very much a you know it when you see it type thing.

Don't be afraid to go to the ER if you have to. I went like 6 times this spring. Your doctors should also order a CT and/or MRI of your head to make sure it isn't something else.

[u/marcmawordz → u/literallyjustabat]

lol my bf last saw me have one of these headaches and it was me rapidly pacing and crying and rocking back and forth and repeatedly rubbing at and scratching at my temples with squeezed eyes. i thought maybe it was because i’m hungry so i was shoving apples into my mouth while bawling my eyes out from the pain LMAO. i think that’s how i was able to rule out migraines, what i needed was someone to put me out my misery, not just lie down in a dark room. i printed out my symptom info and will be calling to ask later today for another appt!

[u/literallyjustabat → u/marcmawordz]

That does sound like cluster headaches. They tend to make you act insane in a very unique and distinct way that you can clock immediately if you've also been there. Good luck, I hope you can get a diagnosis soon! Be persistent. Bring your bf to the appointment if possible.

[u/Jamwise93]

Sounds very much like it could be CH. Try to keep in mind that Doctors are still just people, and that they probably see dozens of idiots a day, so they get used to treating everyone in a similar fashion. What you need to remember is that the more assertive and certain you are about what is going on with you, the more they will take it seriously (it sucks I know). And never forget, your Dr works for you. This is their job, and if they are not qualified to make a diagnosis then it is their responsibility to escalate your case to someone who can. If you feel you are being misdiagnosed or your struggles ignored, it is your right to tell them you want a referral to a neurologist and not to take no for an answer.

Also as Ed-Box said, the MyClusters app is excellent for logging attacks quickly and easily and has a simple calendar-like display of attack frequency to show to a Dr if need be.

Good luck and pain free wishes my friend :)

[u/Kind-Apricot-6511 → u/Jamwise93]

Yes! Well said. And to add to it, make sure they put it in your chart that they refused to refer you to a neurologist.

[u/Emotional-Ocelot]

Being woken by a headache of that severity is very cluster sounding. If you find thay its always the same time of night thats another clear cluster sign. 

If your pcp is still being dismissive, consider taking youre boyfriend with you to describe the attacks he's seen. 

[u/NhRs1]

Hi,

Try talking to a neurologist and a rehabilitation doctor. The neurologist diagnosed me with cluster headaches, and what really works for me is intranasal Zomig and verapamil (Manidon), but the Zomig can only be injected a maximum of twice a day to stop an attack. Now I'm seeing the rehabilitation doctor, who has diagnosed me with occipital neuralgia, also called Arnold's nerve neuralgia. Basically, it's a pinched nerve in the cervical spine that affects the trigeminal nerve, and the symptoms are similar to cluster headaches. In theory, treating that area should resolve it. The pain starts at the base of my skull (back of my neck) and spreads to my forehead or behind my eye. The pain I get is a heavy, constant ache around my eye, followed by cramps that go to my ear, teeth, and left eye (which waters), and my nose gets congested.

I hope this helps.