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 Cluster Headache

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TSzero5177
post Jun 3 2025, 10:51 AM, updated 6 months ago

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Suspect got cluster headache, it came like alarm clock, if happen at 10am, everyday 10am
last for weeks

Strikes yearly, or sometimes few years once

Pain at left side temper/around eyes

Anyone had this and found any good specialist to deal with this?
TSzero5177
post Jun 3 2025, 12:45 PM

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QUOTE(hightechgadgets8 @ Jun 3 2025, 10:56 AM)
have you checked for tumors?
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QUOTE(Blofeld @ Jun 3 2025, 11:10 AM)
probably migraine

i used coffee as a relief. But it works because i'm not a coffee drinker

https://forum.lowyat.net/index.php?showtopic=5481056&hl=
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QUOTE(killdavid @ Jun 3 2025, 11:53 AM)
Temples and eyes.
Migraine issit ? Did you take medication for migraines ?
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It started since more than 10 years back, I haven't do MRI, previously went Clinic only they are not helpful some say migraine some say sinus then give panadol which is not helping at all, after some research online recently find it more likely cluster headache.

Tried Coffee, dark chocollate, banana all sort of stuff, recent finding from ChatGPT suggest use ice pack on temple & back of neck which does help relief the pain a little.

Will visit neurologist see, just got a reference letter from clinic, most likely they might suggest MRI I guess.
TSzero5177
post Jun 3 2025, 05:23 PM

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QUOTE(killdavid @ Jun 3 2025, 01:31 PM)
Panadol have no effect.
Need medication like Caffox.

Yes, best to get it checked by professionals
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Neuro prescribed Celebrex as he suspect the Occipital nerve inflammation, will follow up with him again next week

QUOTE(netflix2019 @ Jun 3 2025, 01:47 PM)
Your job requires u to tilt your head down and or sit on desk for extended period of time?

Recently changed pillow/bed?

I got migrain problem my whole life. Recently found out its because of posture problem. Now regularly do stretching and exercises. Improve posture. Really helps a lot reduce a lot of episode. Main reason sometimes those "kuat" painkiller worls, because its strong enough to cause muscle relaxation. Then your headache goes away.

Or u got sinus problem.

Check out this guy punya iG. @drjoedamiani
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My job mostly staring at screen and make calls, previous clicnic did suspect might be migrane, some say is sinus, but I think otherwise, thus I look for neurologist to see if they can solve my problem, now they suspect is nerve inflammation and prescribed me Celebrex

Nanti I check the IG see

QUOTE(hikashi @ Jun 3 2025, 03:42 PM)
Long time cluster headache sufferer here.

Alot people group migraine with cluster headache together but it is not the same.

Check your main trigger first.
Mine mostly dehydration. Not drinking enough water (cliche i know).

But there are seasons, cluster head comes like a unstoppable train. You can “feel” it is coming and if you dont do anything to abort it, the pain will shoot through the roof. Your eye socket (usually one side) will felt like being pull from the inside and will also start tearing up on that one side.

I still cant find cure to date. But can only manage the pain.

The trick is to abort the incoming cluster headache with proven medication - Sumatriptan.

It is a controlled medicine, and you have to get physician check up in order to get prescribed.

Mainly is to checkup if you have other underlying conditions like aneurism or tumor.

And yes, please do see a doctor first.
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Totally agree, a lot ppl thought is migraine, like u said I can feel it is coming, then it just peak on its own, tearing eye at one side, runny nose, and serious pain. Recently I find some small relief if I apply ice pack behind my neck at the affected side, temple, forehead, wherever the pain goes.

Any side effect taking sumatriptan?

QUOTE(Rusty Nail @ Jun 3 2025, 04:37 PM)
https://forum.lowyat.net/topic/4711051

Read his story, is your symptoms the same?
By the time you start losing balance, it's already too late
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yeah know this case pretty well, for my case doctor said should not be major because I have lived >10 years when I first got this and there is no other symptoms like vomitting/nausea/fainting, just pain alone, but really really serios pain at its peak, pain enough for u to have thoughts to give up living.

let's see how this prescription goes after a week.
TSzero5177
post Jun 4 2025, 11:03 PM

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QUOTE(hikashi @ Jun 4 2025, 05:11 AM)
The side effect sumatriptan varied from person to person. For me it is God sent. Only feel slightly tired from it and i still can be productive. No other medicine can abort my CH attack. I tried every class of medication, panadol, celebrex, naproxen, caffox and none of them as effective as triptan.

The problem with CH is you need to abort it early as soon as you felt it. Any later and your day will be ruined when the CH is on its highest strength and it is difficult to subside even on triptan.

Side note, triptan is really expensive. Each pill can go up to RM25-30 for ori brand (imigran-gsk). Generic is about rm5 each. A price to pay for quality of life.

Again, please do look for physician to rule out other possible underlying issue. Dont self prescribe the medicine.
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Just started Celebrex yesterday, 2x 200mg a day

But still yesterday night around 10pm my headache attacked again,

then this afternoon around 12pm my headache attacked once more.

Made me feel the cerebrex is useless, I read online that it will at its peak effect at around 3rd hour, I took med around 10am but 12pm still headache.

Btw have u ever tried inhaling oxygen? like those Portable ones we get 1000ml per bottle
TSzero5177
post Jun 5 2025, 10:23 AM

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QUOTE(hikashi @ Jun 5 2025, 08:35 AM)
CH treatment is split into two:

Abortive - used to stop the incoming pain quickly.
- high o2 flow
- sumatriptan (oral, spray or injection)

Preventive - used to reduce frequency of attack until 0.
- verapamil
- prednisone (high dose to low dose)
- high dose of Vitamin D

Quite frankly if your headache is really Cluster Headache, the doctor is wasting your time prescribing Celecoxib. It works for inflammation and arthritis but CH need fast acting treatment to abort the pain like o2 treatment or sumatriptan. If your doctor not actively ruling out other issue (mri scan or ecg), please go find 2nd opinion. Meanwhile log your pain diary.
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You have any specialist/doctor to recommend? I too felt like wasting time and continue suffering daily
TSzero5177
post Jun 5 2025, 10:33 AM

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QUOTE(Blofeld @ Jun 5 2025, 10:30 AM)
have u monitored your sleeping schedule?
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7-8 hours sleep daily, this morning woke up then att came
TSzero5177
post Jun 5 2025, 12:15 PM

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QUOTE(AriesChai @ Jun 5 2025, 12:09 PM)
Try this

Eat raw
Tumeric 2g-3g
Old ginger 2g-3g

Twice a day
every morning and before sleep

Can feel the instant effect
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Is this for Migraine or Cluster Headache?
TSzero5177
post Jun 10 2025, 06:34 PM

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QUOTE(Boomwick @ Jun 5 2025, 05:02 PM)
Did some parasite climb up ur brain ad ?

Cysticerosis

Tape worm larvae? Hookworm larvea
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I would say unlikely, but anyway I'm doing a CT scan tomorrow

QUOTE(AEROZ @ Jun 5 2025, 11:02 PM)
I highly suspected it's your work posture issue.
It had greatly strained your neck/SCM muscles, which can contribute to headache, dizziness, nausea, etc.
I recommend that you go for physio to get it checked.
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I'm not sure about posture because this occur before I get in to work, when studying around 19 years old.
Currently referred by doctor to check Sinus for any blockage, will do CT scan tomorrow

QUOTE(OnePiece999 @ Jun 6 2025, 03:57 PM)
Go do full body blood test, pay the maximum package one don’t cheap out, the usual 1000 to 2000 ringgit one, which do more than 100 advance sample blood test, from that then only see what to do next. Don’t go for cheap govt one also which they also cheap out the test to bare minimum.
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I take almost everything from Pathlab, that doesn't show any red flag including tumor marker.
Currently checking sinus via CT scan tmr to see if there's any lead. The prescribed Cerebrex doesn't work and they say this seems like a long way till I get to identify what it is.

QUOTE(ragk @ Jun 9 2025, 05:19 PM)
Other than headache, did u felt any tightness behind your neck?

I used to have migraine for many years, can felt the tightness inside my head like something pulling from inner part of my head, straining my eye sometimes causing me to have blur vision.

It's headache so i keep checking on my head, but end up it's something unrelated, it's my neck/back issue which is stretching my head and eye, physio and chiropractic resolved my issue in the end... I'm a programmer so I need sit and stare at monitor for many hours a day too.
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During headache, some of my muscle at neck is stiffer, I tried Chiropractic before who specialized on neck, but it doesn't solve my problem. Lets see CT scan tmr showing anything for Sinus.

TSzero5177
post Jun 11 2025, 09:54 AM

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QUOTE(ragk @ Jun 10 2025, 07:03 PM)
FYI, I start feeling it when i was 17, but i do have Sinus issue, so i always think it's causing by my Sinus, but it's not. The symptom getting worst as im gaining age.
Have u went to any massage sifu before? I can let u know u my whole experience of my problem, hope it helped.

In my older day when I still have very serious headache, on the most severe occasion I need to EL and rest at home, and almost everyday i wake up i've horrible headache.

I keep looking for solution by checking on my head until one day my friend suggest that it might have something to do with my neck/muscle, and he intro me to a Chinese massage sifu.

And the Sifu can tell which area of my muscle is abnormal/stiff by just touching on it, and from here my symptom started to mitigate. This Sifu can't cure my problem, but he identified my problem, because i can feel the improvement right away, i can see thing clearer thn usual, and after some weeks keep revisiting im getting better and better.

This Sifu is not the solution, but he clearly pointed out where my problem came from. So for the next few years, i keep visit this Sifu 3-4 times a month to minimize the impact, while also visiting different Doctor to find permanent solution.

My final solution is Chiropractic, i've minor scoliosis (proven by X-ray) which causing my back muscle to stay imbalance. Chiropractic didn't just cured me right away, I can felt some improvement on first few visit, and things stay stagnant for few months, not much improvement, and then I switch to Senior Chiropractor, thn things start to get better again until today.

Occasionally i still felt a little bit of headache, but I will say it's 95% better then older day. I still need to visit Chiropractor every 3 months now for maintenance, and I also worked with the Chiropractor to adjust my posture problem, change my bed, my chair, my working station etc, so that my condition won't reoccurred due to bad posture. That's lot of maintenance to do, but it's worthy.

Are u staying in KL area? The Sifu i mentioned above stay in USJ Area, if u are interested, i can pm u his phone number, u can find him to see if he can identify your issue.
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I'm going for specialist first for now to see if they can trace anything.

I would keep the massage/tit tar option open

Chiropractic I went for sessions like bi-weekly for 3 months and my headache strikes at end of session feeling it doesn't help much I aborted.

Pls PM and advise the cost involved

 

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