The headache that changed my life

By Blake, Pituitary apoplexy, Hypopituitarism, Ireland, February 25, 2021

I guess I'll start from the beginning for me. I went to bed one weekend night but was woken up abruptly shortly after feeling a bad pain in my head. I'm not someone who suffers from headaches that much but as they go, this headache couldn't be matched. From when I first felt the pain it didn't take long for that to escalate to a much more intense headache. Throbbing, sharp, pounding are some words I've used to try to describe it, along with the high sensitivity to light, loss of appetite and just not wanting to move a muscle because staying still made it more bearable. 

This went on for a little over a day and a half and zero sleep since I had been woken up, before my local doctor was called, who heard the symptoms and thought there wasnt much he himself could do for me, so referred me to the hospital.

Slowly moved around and managed to have a shower which took a lot longer than it should have. Got driven to the hospital as I was in no condition to be able to drive, and dropped off at the Emergency Department of my local hospital where I entered alone due to current Covid-19 pandemic. A slow walk to the desk to inform them my doctor referred me there, a little wait and I was brought down to the medical unit. All while walking at a pace about 5x slower than my usual, wearing the mandatory surgical mask and blacked out sunglasses to avoid the bright ceiling lights in the hospital I looked like a scene from weekend at Bernie's.  

Once arrived I was asked all the usual questions numourous times by each nurse and doctor that saw me. Eventually I was given a cubicle and a bed where I could rest my head, still haven't eaten at this stage with the exception of a small yoghurt when I was still at home, and only drank water when it was accompanied by painkillers, which didnt do much for me. I spent all my time laying sideways on the bed away from any direct light, sunglasses on, clutching my head with both hands from the severe pain I was feeling, it never went away, it didn't come and go in waves, it was always there pounding non stop, any tiny movements would reset it. It had been over 72 hours by now and the pain had only gotten worse, this was my first worry that it wouldn't just be a bad migraine or something along those less sinister lines. 

The professor that was assigned to my case in the hospital had examined me and determined I needed a CT scan of my head. This was booked and I attended the next day. In between all of this I hadn't eaten any of the food offered, and maybe just a tiny amount of water as I couldn't bring myself to lift my head off the pillow it was too painful, the only time I did was when i had held my pee for hours and couldn't hold it anymore, so another slow walk to the toilet and what i would describe as a rusty brown pee colour due to the dehydration from not having anywhere near the amount of water i needed in my body. This was my second indication that what I was feeling wasn't your run of the mill headache, giving up on your core needs for survival like food and water because of a headache. 


The CT scan came back and I originally thought had been alright.  But the professor who ordered it spotted something that didn't look like a normal CT. Next course of action was a lumbar puncture to extract some of what's called CSF or spinal fluid to test for things like a bleed in the brain, meningitis. I downright refused first of all. I had been in the hospital alone for the most part. Hadn't eaten and not an amount of water to bother documenting. These are all excuses to be honest and I said no because 1) I was afraid of being told there was something amiss and 2) I didnt want a long needle traversed into my Lumbar spine on top of all the pain I was already feeling. But after a while and some talking to from my significant other I put on my big boy pants and informed the nurse in charge I'll consent to the procedure,  about an hour later a few doctors came to my cubicle and told me to bend forward over the bed and arch my back as much as I could. Anaesthetic needle went in, a sharp pinch but okay, the lumbar needle followed, I suddenly broke out into a full body cold sweat, felt a "pop" in my ears along with a jolt of what I can only describe as sciatica down my right leg, I told them to withdraw the needle, which they obliged, no sample in hand. Following this a brain MRI was ordered, just a more detailed version of what the CT scan captured.

I was moved up to an inpatient day ward in the meantime, a much more relaxed and attentive area compared to the acute medical unit I had came from. I was still in a lot of pain and it hadn't died down, this would have been 4/5 days in the hospital. I remember my first night in the ward, I must have driven the nurse on call mad with the buzzer next to my bed, "can I have some pain meds" "is there anything else you can give me". That night was probably the most painful where the other times the pain was an 7/8 out of 10 at the lowest, this was definitely well exceeding a 10/10, it was as if the pain in my head decided to peak and then just stay there, this left me holding my head with enough pressure to pull hair out,  tossing and turning on the spot, crying my eyes out, nurse came in and gave me some stronger pain meds, something in the opiate family. This ever so slightly resolved it, enough to help me sleep for about 2 hours. The most I had gotten in the last week. 


Fast forward a couple days and as I was sitting in my bed minding my own business, the curtain swings open and the professor from the medical unit arrives in, along with another man in a suit, and three maybe four students behind them, as this was a university/teaching hospital. At this point the only thought in my mind was "[email protected]&K". The professor pulled up a chair next to me and introduced my to the suited man as an Endocrinologist in the hospital.  At the time I didnt know what that meant, other than he was a specialist in some sort of field. The professor then looked at me and explained the MRI on my brain revealed a mass on my pituitary gland, a tumor, or adenoma, which is a non-cancerous tumor. Not only that but the reason I'm in so much pain was because the tumor started to bleed, suddenly enlarged and burst, lost its blood supply, and permenantly damaged my pituitary gland in the process. Pituitary apoplexy is the clinical term, and it affects a very small percentage of people who have known pituitary adenomas, even less for people who have no pre-diagnosed disorder, which was my case. This, in turn, left me with another condition called Hypopituitarism,  which is when the pituitary gland fails to produce one or more hormones throughout the body, in my case, Three. 

You know when you're watching a movie and someone receives some bad news and the actor just stares into space, it's really like that, at least it was for me. I completely zoned out, dont even think I blinked for the duration. My brain couldn't keep up with the amount of racing thoughts flying through my head. My body pretty much went into shock and the only thing I could manage to do was cry, a lot, for a long time.

The endocrinologist had returned to my room and asked me some questions, which resulted in me immediately receiving some Corticosteroids due to an insufficient ACTH hormone produced by the adrenal glands. This was the first medication I was put on as I believe can be life threatening if it's not corrected and cause something called an adrenal crisis. This was my saving grace because one hour after I had been given the dose of the steroids, the pain pretty much vanished, I couldn't believe it, I had spent well over a week in absolute agony being on 3/4 different pain meds every day and they did nothing. That level of pain hasn't returned since, so I'm very conscious about taking my meds on time. I had some blood tests done and it was explained to me that I'm also deficient in TSH which is your thyroid stimulating hormone along with Testosterone,  I was given medication for each which presumably I will be taking for the rest of my life. It was a strange scenario to wrap my head around because the separate glands around my body are perfectly fine, it's the master gland that tells them what to do is damaged, so those hormones are not being secreted and the signals arent being sent by the pituitary gland. 

My condition involves me having to be in the care of two specialists, an endocrinologist and a neurosurgeon, a third if surgery is required, that being an E.N.T specialist. As a result of this I was transferred to another hospital just for a day to meet with the neurosurgeon because there are only two neurosurgeon departments in the country, and my hospital was neither of them.

This is where I got confirmation that the tumor had actually stroked out and killed itself as the neurosurgeon described. Which gave me some relief, although theres a chance it could regrow but for now, it wasnt the worst news I could have received on my birthday. Transfer back to my own hospital where I was continually monitored. I was discharged the next day, one day after my birthday and 11 days altogether in the hospital. I don't know if it was from the imbalance of hormones or side effects of the medication,  but it was an emotional moment for me. 

You take a lot for granted when you're confined to a hospital bed for a number of days, like standing in crisp fresh air, so I didnt mind waiting for 15 minutes to be collected at the hospital entrance. On the trip home I had never looked out the window at the scenery as much, the whole experience made me more appreciative of what's around me. Puts things in perspective when your mortality is in question. 

Since I've left the hospital I've managed to stick to a healthier lifestyle of eating and exercising,  something I've never been able to maintain for very long. Although the first couple weeks home were slow and rough each day is a small improvement over the last, sometimes I get slight pains in my head but I was told that is to be expected as the tumor shrinks from its lost blood supply. And just the fact that it's still there. 

So this is my story, I may have left details out along the way, stuff that was either too personal or just strayed from the whole point of the story which is to raise awareness of this condition.

For anyone stuck in limbo going through all this, there is light at the end of the tunnel, I struggled to see it, but it's there, and while it may be a rare condition there is still research being done and new things being discovered. Educate yourself on what's going on in your own body it'll help ease the frustration and make you realise you can still have a good quality of life. 

For anyone reading this who is in good health, my only advice is to visit your doctor with anything that seems out of the ordinary, I was always one to put it off, and looking back in hindsight there are things now that seem out of place and could have been attributed to the tumor and all the hormone deficiency it can bring. There's a chance it could have been detected earlier and I could have avoided all that pain.

Thanks to anyone who endured reading all of my story, I didnt expect it to be this long. That's all from me now I'm late to take my meds. 

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