I have had severe cluster like headaches for 10 years now. But I also have had odd side effects with my headaches

Over heating
Fake thirst boats
Odd cravings for fruits
Eye movements , at night, all led lights in The room wiggle
Desire for Isolation
Occasional super enhanced smell

My headaches lasted from 3 minutes to 36 hours

They are vascular and respond well to triptans and Advil.

I went to the Cleveland clinic for their 3 week headache course and they saved my life by getting me off sumatriptan 3 times a day which was going to stroke me out. But they did not diagnose me.

A nurse said try pot. It works! Seems to convert the brain freeze pain of the headache to feeling like someone is pressing on my forehead with their fingertips, which is odd, but not painful.

I went to a gland doctor for my prostrate and we stated talking about my headaches and he diagnosed me. So now things add up. The crazy list of associated problems are listed for pituitary malfunction.

I thought I had cluster headaches for years.

I am now on clomed, a woman fertility drug. Odd results. Half my off symptoms are worse and half are gone. Headaches changed pattern from three days off and three days on, to up to 5 days off, but short worse headaches. clomed is not fun to take. It makes me, a 58 year man old cry a lot.

Can anybody tell me where to find someone with the same pituitary malfunction headache? I am tired of being alone in this.

Also, I had had to explain my head ache so many times that I found if I wrote a poem about it, people would actually understand my problem, so here it is


The alien at night
It whispers in my head,
not a kindly touch of care
But a whispery touch dread

It’s tendrils stoke my inside brain,
Waking eyes strain for light
The headache wakes inside my mind
In the middle of the night.

Consciousness congeals
Red numbers on the clock
I know I have been awaken
By the alien at 3 O’clock

This familiar type of pain
In the center of my brain
It wakes me with its touch
At this level, it isn’t much

But like a spark into a flame
This demon has a game
It always ratchets up
To a level higher up
My life will never skip
It’s ascendancy of KIP

I fumble and bumble like the dead
For the bag beside my bed
The medicines for strife
That live in the “bag of life”

I sit up and try to assess
The level that I am at
If it’s just a touch of the devil,
Indomethacine for that

But if pain strikes deep
Into the left lobe, sharp and deep
Then time is a ticken
To take that sumatriptan

I know I am gifted here
Because at an earlier date
The doctors had removed
All my turbinates

This allows a direct nasal shot
Two milligrams is minimal
With the nasal spray that I got
It directly hits the triginimal

Game over for my sleep
I dress and shower for the day
This is the life I keep
The headache has its way

The black tital wave behind me
Broiling dark and deep
A huge shadow at my back
And frothing at my feet

Headaches come in all shapes and sizes
Like models of a car
Some don’t fit the categories
To allow diagnosis from a far

Migraines mixed with cluster
Confound my neurologist
He does not have an answer
So he simply goes down the list

You take too many drugs
You make your own rebound
It’s simple to accomplish
It’s a trick that I have found

Fear is not a simple thing
For a man to understand
But anyone facing level 10
Treads on hallowed grounds

When pain and wrath will take its grip
And strip you of your sentience
It forces brain acceptance of
A near death experience

I think myself a tough old man
But for reasons I don’t know why
Just the thought of a level ten
It makes me start to cry

I imagine that I look at myself
from a corner of the ceiling
I know my brain is manipulated
To overtly express its feelings

My pain is like a block of cheese
For a squeaky door mouse
Food for the demon in my mind
Drawn by my hypothalamus

Brilliant pictures of the colors that I see
Segmented Sparking cables that are wagging free
Excited by both sight and sound
In a blackened room on a blackened ground

...interesting post Weum....a few thoughts....

....total speculation here but i've always suspected that a "wonky hypothalamus" may only be part of what is behind ch...and that what caused the wonkiness may well have affected other glands/neurological tissues....causing all kinds of issues which may or may not be related to ch at all..

...in my case, my pcp (who knew nothing about ch) used to test me for hypothyroidism on a disturbingly frequent basis...never found, but there must be coincidental symptoms with ch...

...speaking of symptoms, several of those you listed are fairly commonly reported here and elsewhere by clusterheads, including myself: overheating (controlled by the hypothalamus), desire for isolation (boy howdy), and occasional enhanced olfactory response (made my living with my nose so highly noticeable and not a negative in my case)....

...3 min to 36 hrs does not sound like ch,...

...advil and other nsaids rarely have any effect on ch..

...sorry you went so long un/miss diagnosed...we can relate....making a talented diagnostician extremely critical ...i despair that so many of us have no access or opportunity with a headache specialist....

...re pot and vascular headache...that's one of those black and white things...some clusterheads report relief...others say trigger....since a vasodilator, i cannot imagine why it would work...but we all be different..

...thanks for the cool poem!

best

jonathan