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Cluster Headache Help and Support >> Getting to Know Ya >> Hypopituitary http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1603638066 Message started by Weum on Oct 25th, 2020 at 11:01am |
Title: Hypopituitary Post by Weum on Oct 25th, 2020 at 11:01am
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 |
Title: Re: Hypopituitary Post by AussieBrian on Oct 25th, 2020 at 5:17pm
For so long now here at ch.com we've been stressing the necessity of getting a firm diagnosis, knowing full well how difficult that can be, though I admit it's usually the other way around. Genuine ClusterHeads being bundled off with some other disease and poisoned with treatments that are useless for this dread affliction.
There are even some of us who have more than one headache syndrome and then things can get mighty interesting, I can tell you. I'm really glad you're getting somewhere at last and able to have at least a little hope for the future. Full steam ahead and damn the torpedoes!!! Brian down under. PS Loved the poem. |
Title: Re: Hypopituitary Post by jon019 on Oct 25th, 2020 at 7:19pm
...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 |
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