I've been on Metyrapone for about 8 weeks now and much to my luck, it's still giving me sucky side effects. About 15-20 minutes after taking it I get a sudden wave of light-headed and dizziness and, as one woman described in her experience, 'eyes roll around my head like a smack addict on a fix'... then I get an overwhelming urge to sleep away the day. I also started getting those kind of headaches that you get if you're stuck in a stuffy car with a really bad driver, constantly. I'm usually not a headachy person at all, so developing a perma-ache really ain't my cup of tea. Oh and I've also started to get painful migraines that actually physically hurt and wake me up in the middle of the night more frequently. (recent life really has been joyus).
So my follow up Metyrapone day curve test was originally meant to be on the 21st January, but my Mum called my CNS worried about my headaches, drowsiness and the rash around my neck and chest getting worse, so they brought it forward to the 7th so they could 'check me out' sooner rather than later. That day I walked in and as soon as I was seen I got told 'lie down, you look ill'. (Cheers). But at least this meant I was given a bed this time... swings and roundabouts. I can't really tell you much about the day because I was quite literally unconscious the entire time. When my arse touched that bed and the curtain was drawn, I was out like a light. I can't really recall the outcome of when Jackie (consultant) and Patsy (CNS) came to see me. We spoke for ages but didn't actually say much. All I can really remember was that Jackie was relieved that Metyrapone hadn't induced my rash and it was there before, and that we should wait on the results to see what's going on to find an explanation for my symptoms.
About 10 days later my mum gave my CNS another ring because the side effects were only really getting worse. She suggested starting me on Hydrocortisone (a cortisol replacement) because it seemed like the Metyrapone was doing too much of a good job and my symptoms suggest that now my cortisol levels were too low. So that was that, another couple pills to add to my daily cocktail pot. I kept my fingers crossed that it would pump some energy back into me so I could actually schedule something that lasts longer than 3 hours into my day, but alas, no luck. I haven't actually felt any different since starting. In fact, one day I had a migraine all throughout the day and when I finally got up at 5.30 (pm) I was beckoned back to bed with the same pounding headache by 10.
My next appointment was a CT scan of my adrenals, just to make sure I wasn't double whammy-ed with a tumour on my brain and my adrenal glands. Another quite fun experience, except when they pumped the contrast through my 'teeny weeny veins' (as he ever so kindly put it), it gave me a sensation that felt like I'd wet myself. I felt wholly inappropriate talking to him trying to remain normal whilst down below, I felt like I was sitting in piss. Anyway, results from that came back and although I have enlarged adrenals (which is to be expected as they're doing more work than the average), there were no growths or abnormalities... hooray!
Next up was another day curve... another six glorious hours of doing nothing. The day before, my nurse called me and asked me not to take my hydrocortisone but I thought 'eh?' Wasn't this day curve test to check they'd balanced my medications right and to see if my cortisol levels were now at the right level? Anyway, she said she'd talk to one of the doctors and call me back with an answer... her answer was that I could take it. Turns out I shouldn't have. About half way through the day when I was seen by Dr Chris he said they weren't trying to see if they'd balanced it out right, they were still testing the effectiveness of Metyrapone, so by me taking cortisol replacement I've basically made all the results dud. whoopsy. He said he'd try and interpret the results anyway, but booked me in for a repeat day curve test the following week. This time with no hydrocortisone.
So the next week rolls around, and this time I brought my mum with me. She's better at understanding all those medical terms and is slightly more on the ball to ask any relevant questions. My nurse told me the week before to write anything I wanted the doctor to explain to me down, so I didn't forget, so we arrived prepped with another long list...
- Have I already started part of the recovery by weaning me off the cortisol?
Apparently, no... they haven't put me on metyrapone to avoid the shock of lower cortisol levels, theyve put me on it to prep my skin tissue for the physical impact of surgery. Apparently if they were to operate now, when they cut away behind my nose, stitching me back up would be like 'putting stitches in butter', and they need me to be firmer in order for me to heal. - Am I going to have a catheter in my pee hole?!
No... praise the lord!!!!! My mum had read somewhere that they can usually use a catheter as a way of monitoring urinary output as the pituitary gland controls some kind of hormone that controls the bladder or something. Turns out i just have to piss in a bed pan. (woo) - Would I be under the care of neuro or endocrine?
Technically neuro, but under the endocrine department of neurology - How long will I need someone to be by my bedside answering to every beckoning call?
I should be discharged in day 4 or 5 and I should be able to do things for myself straight away really, so having someone permanently by my side to do everything for me isn't entirely necessary (dammit). I'll just be very weak, slow and drowsy.
and typically, I can't really remember many of the other questions. One of the first things I did ask though was to see my MRI and be formally introduced to the shitbag that's decided to set up shop inside my brain. I can't say I knew entirely what I was looking at but here are a couple photos from the scan:
Anyway so at this appointment they continued to monitor my blood pressure and just my luck it was still too high, usually reading around high 150s over low 120s, they decided to increase my dosage of amlodipine to 10mg a day. This brought my BP back down to normal readings, which for me was a milestone... I'd never had that before! But since starting the higher dose I noticed my knees and ankles were getting swollen and itchy. Fab. Just what I need... headaches, drowsiness, nausea annnnd kankles to top it off! Being the shape of a tree trunk isn't my preference so I booked an appointment with the doctors to see what they could do. And then, when I was standing in the same position for about half an hour, I looked down and my feet were practically black and my legs had turned blue! When I started walking around the colour came back but it was weird looking down and seeing what resembled a dead body. Kinda gross, but kinda cool. Anyway, so I went to the docs and now I have to switch to Ramipril and go for a check up and blood test (to make sure it's not killing my kidneys) in two weeks.
Oh and they also said that the results of all my previous tests show that although the metyrapone is doing its job, my cortisol levels are still higher than average. The results from the test I did when I accidently took hydrocortisone showed my cortisol levels were in the thousands... So its likely that my dosage of metyrapone will increase... Im tired of feeling crap all the time from all this medication and really wish surgery would hurry up! But I have a meeting with a neurosurgical team on the 21st March which isn't too far away I guess and I think they'll set a (near future) date then. And I'm making a pie tomorrow, so I guess life still has its perks.
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