Health thingy

[Barry Admin]

This is embarrassing to talk about such personal stuff for me, but I've spent the past week fretting that I've caused people to worry unduly, so need to clear it up.  My head was absolutely spinning when I got out of the hospital last week, with a possible "probably benign tumour" in the noggin, and all the mad stuff they said about how complex it was compared to everyone else they see, and that we'd "get to know each other very well and would see each other all the time."

I was trying to avoid it as much as I could, but had trouble reading threads on here over the last two days, so had to bite the bullet and do some research.  I really hate asking for help but probably do need some advice or input on all this too.  Being avoidant is just stressing me out more now.  It's also a lesser known thing, so maybe it'll help others.

So the basic thing is I've really struggled to sleep for the past few years, and it's got worse and worse.  I don't have so much trouble getting to sleep these days, it's more staying asleep; I wake constantly for a piss during the night. I have barely any drive to do stuff, and I fall asleep during the day anyway, just doze off like an old man. There's more, but this is the essence of it; the stuff that's really driving me mad.  I struggle with motivation and focus and memory anyway, but those things are all totally fucked now, it's very difficult. I'm sorry if I'm even worse at correspondence now, I fret and worry about that shit all the time, but I just have very limited energy or focus.

So anyway I'm getting a barrage of tests, and the MRI is next.  I got another letter today from the hospital and it reaffirmed what they said last week - they think it's possibly a tumour, on my pituitary gland.  The other tests I got last week made them want to push ahead with this idea. I didn't think this was a possibility as I don't feel I've had any problems with my vision, beyond the occasional symptomless migraine etc.  But as I said, I struggled to read a thread on here two nights ago, and have been finding it a bit harder to focus on posts on my phone.  So that's really shit me up a fair bit. It seems like there's some chance of permanent damage to vision if I have this.

That's it really. My vision seems blurry again today so I'm wondering if it's anxiety or an actual problem, feels more like an actual problem, over the past few days. I mean, suddenly I'm trying to find the reading glasses I've never actually used since I got them lol.

[bgmnts]

Going through very similar things over the past decade or so, culminating in health stuff myself, so can only say you're not alone and I hope you get better soon.

[Endicott]

All the best Neil. I hope it turns out to be something simple and benign.

[Schlippy]

The vision thing may just be age, I'm pusing 50 now and my vision has fallen off a cliff in the last 2 years. I used to use a single pair of distance lenses for everything and I now need 3 different pairs for reading at different distances because of how shite my eyes have become.

Maybe get a sight test and check that the blurriness isn't just age-related macular degeneration or similar? You can usually get one with a day or two's notice, should at least help with the anxiety.

Edit: and obviously lack of sleep is going to exacerbate strain on your eyes, even if only temporarily.

[Schlippy]

From a two minute read on pituitary tumours they're most likely to cause double vision or loss of peripheral vision, not blurriness, as they put pressure on the eye and deform it's shape. Blurriness is down to the muscles within the eye that focus the lens getting weaker over time. Get yourself an eye test, chief.

[Barry Admin]

Thank.  And you too bgmnts.

The vision thing may just be age, I'm pusing 50 now and my vision has fallen off a cliff in the last 2 years. I used to use a single pair of distance lenses for everything and I now need 3 different pairs for reading at different distances because of how shite my eyes have become.

Maybe get a sight test and check that the blurriness isn't just age-related macular degeneration or similar? You can usually get one with a day or two's notice, should at least help with the anxiety.

Edit: and obviously lack of sleep is going to exacerbate strain on your eyes, even if only temporarily.

This is out of nowhere. My vision has got worse with age, which is why I agreed to get the reading glasses with my 2 for 1 deal a year or two ago.  It's been coming and going the past two days tho, this blurriness.  I dunno if it's just me worrying or not.  I actually rang the consultant an hour ago and left a message re: an eye test. If I'm due another free one then it seems like they can possibly look for the tumour, going by something I read online.  Waiting for confirmation, as the MRI process can take forever, even though these guys are trying to rush everything through, which I'm very grateful for.

From a two minute read on pituitary tumours they're most likely to cause double vision or loss of peripheral vision, not blurriness, as they put pressure on the eye and deform it's shape. Blurriness is down to the muscles within the eye that focus the lens getting weaker over time. Get yourself an eye test, chief.

Interesting, thanks.  I don't think there's anything wrong with my peripheral vision which is why I didn't initially think they were right re: a tumour. 
As well as blurriness, there's a sort of lack of contrast that's making it harder to read.

Anyway I think I'll go and phone them, thanks for the info.

[Kankurette]

Hopefully it's nothing serious. It might be a dermoid cyst? I had one removed from near my left eye in 2012, it was a bit gross (it had teeth in it!) but benign.

[Milo]

You could download and print an Amsler grid if you want to get some sort of objective idea of any visual disturbances. The brain is very good at filling in the blanks so it's not easy to be sure when there's something wrong. Plus a million things can affect vision, most of them nothing unpleasant.

[Schlippy]

Specsavers in Belfast have multiple appointments available for this afternoon. If you're over forty and tell them one of your parents had glaucoma (doesn't matter if they did or not, they won't check) the test is free. They do an additional 3D imaging scan for a tenner which will show the entire internal orbit of the eye along with any pressure-related issues.

You can book here:

https://www.specsavers.co.uk/book/belfast/appointment-type

[Barry Admin]

I just rang them, it's not free til the 1st of July as I had one in 2022. Thanks anyway man. I'll see what the consultant says when he gets back to me, as to whether or not it's worth doing anyway.

[TrenterPercenter]

Understandable that you are feeling anxious but worth remembering most of these things are benign and even then it's not always the case you would actually need treatment (it could be as simple as there are lifestyle changes that combat some of the symptoms).

For your situation right now anxiety is going to be playing a big part, all of the symptoms you've described; motivation, focus, memory, sleep and night pissing (over active bladder) are very much symptoms of anxiety/depression (you don't have to be consciously feeling down all the time to be suffering with depression it can be response to anxiety led).  Your vision stuff I'm inclined to go with anxiety again at the moment has this started since you've become aware of vision problems with pituitary tumours - you'd think that if it was that it would be progressive and permanent not changeable also I thought it was peripheral vision (though obvs I'm not an expert on these things).

Looks like they are trying to eliminate things you'll know more after the MRI but remember then even if they did find something then they might just say we just want to keep an eye on it and treatment might just be taking some meds rather than anything more invasive.

Whatever the case time to be kind to yourself and relax as best you can.

[Barry Admin]

Thanks, but I'm not depressed.  And there are hormonal issues driving all this. Not going into further detail on it, but it's certainly not all down to anxiety.

[Blue Jam]

Anxiety can have a hormonal cause:

I've really struggled to sleep for the past few years... I don't have so much trouble getting to sleep these days, it's more staying asleep... I have barely any drive to do stuff, and I fall asleep during the day anyway, just doze off like an old man...  I struggle with motivation and focus and memory anyway, but those things are all totally fucked now, it's very difficult... My vision seems blurry again today... anxiety

I've had all of these issues and more lately, including worsening vision (it's honestly not from etc) and in my case it turned out the cause was starting perimenopause a bit early and I felt a lot better with HRT. While you're obviously not perimenopausal, the hormones involved include luteinising hormone (LH) and follicle-stimulating hormone (FSH) which are secreted by the pituatry in both men and women.

Interesting to note that you have so many similar symptoms, and as you are probably aware now there are hormonal and hormone-blocking drug treatments also available specifically for pituatry disorders. HRT sorted out a lot of my hormonal issues and made it feel like a cloud had been lifted, I hope you can get some comparable help for any hormonal imbalances you may have.

It's scary but you'll have answers soon, and there are ways to sort this. All the best for the treatment and recovery xxx

[TrenterPercenter]

Thanks, but I'm not depressed.  And there are hormonal issues driving all this. Not going into further detail on it, but it's certainly not all down to anxiety.

Sorry I'm not saying it is I was just talking about if you are worried about things it is likely exacerbating your symptoms and making those symptoms seem worse.  Your tests suggest there is something that needs investigating so best of luck with it all and all the best.

[shoulders]

Hopefully they can diagnose and fix this Barry, in the meantime take it easy and look after yourself without punishing yourself if that makes sense.

[buttgammon]

Hope all goes well and it turns out to something that can be sorted easily.

[Minami Minegishi]

Really sorry to hear this.

I don't want to make this about me but sleep is easily the biggest problem in my life, or at least the symptom that is most impactful. I have access to medical journals and I get pinged when there is anything related to sleep. I've also been to sleep clinics etc.

I have advice and tips if you want them, but for now please know that accumulative sleep deprivation, or are least accumulative unhealthy sleep, will knock-on to EVERYTHING. Appetite, mood, anxiety, paranoia, getting on with people and just doing things and giving a fuck about anything. Absolutely an all-encompassing monster that compounds any issue, and also stops you doing all the things that will help you sleep.

[Mister Six]

Fuck, Barry, that's shit news. But I'd wager your sleep/focus problems right now are more to do with stress and the massive psychological shock to your system of this possible diagnosis than anything to do with your pituitary gland.

Talk to your doctor about getting some trazodone or something to knock you out at night, and if you can, get a therapist so you can get some of the worries rattling around in your head out there. Talking stuff through can be really useful, I swear.

And for what it's worth, you have us. Lots of love, man, for real.

[Blue Jam]

Eyesight problems genuinely can be hormonal! Scary but true, ask any perimenopausal woman.

Would it be worth starting yet another glasses thread? By coincidence I have just booked an eye test myself and ordered some frames to try on at home. Might be helpful for anyone needing advice on the most cost-effective options too.

[tookish]

I don't have any advice but I'm sending you so much love. We're always here for you, pal.

[Barry Admin]

Really sorry to hear this.

I don't want to make this about me but sleep is easily the biggest problem in my life, or at least the symptom that is most impactful. I have access to medical journals and I get pinged when there is anything related to sleep. I've also been to sleep clinics etc.

I have advice and tips if you want them, but for now please know that accumulative sleep deprivation, or are least accumulative unhealthy sleep, will knock-on to EVERYTHING. Appetite, mood, anxiety, paranoia, getting on with people and just doing things and giving a fuck about anything. Absolutely an all-encompassing monster that compounds any issue, and also stops you doing all the things that will help you sleep.

Yeah I totally agree with you, it's a huge issue for me. I get off to sleep better since I started listening to music again every night in bed, but the inability to stay asleep for more than an hour or two - over the course of a few years now - has been a nightmare.

I really hate sleepers and how addictive they are, but am reconsidering trying them again now, to see if they might knock me out for a bit longer.

[Barry Admin]

Fuck, Barry, that's shit news. But I'd wager your sleep/focus problems right now are more to do with stress and the massive psychological shock to your system of this possible diagnosis than anything to do with your pituitary gland.

Talk to your doctor about getting some trazodone or something to knock you out at night, and if you can, get a therapist so you can get some of the worries rattling around in your head out there. Talking stuff through can be really useful, I swear.

And for what it's worth, you have us. Lots of love, man, for real.

Thank you <3 I'm actually in CBT at the minute due to the kneecapping I got dragged into a couple of years back and stuff like that. It's a bit frustrating that I've spent years trying to get this, and now struggle to wring the most out of it due to brain fog and my memory being particularly bad now cause of all this. But it's helping and it's good.

I agree with Trenter and you that anxiety isn't helping any of this, but the root cause is certainly hormonal problems. So there's genetic testing and all kinds of things being done, but the main theory now is a tumour.

[Mister Six]

Sorry @Barry Admin, don't mean to deny the underlying medical issue, was just thinking that if things have gotten worse over the past week since the pre-diagnosis it could well be stress related.

[Bartholomew J Krishna]

Unfortunately I have nothing to offer but my best wishes.

[Minami Minegishi]

Yeah I totally agree with you, it's a huge issue for me. I get off to sleep better since I started listening to music again every night in bed, but the inability to stay asleep for more than an hour or two - over the course of a few years now - has been a nightmare.

It's brutal. That feeling that you managed to get to sleep by some measure of effort, and then it's 2.30am and you're wide awake. It's so frustrating and you really feel like the world is against you, which is a slippery slope to actual depression. It's good that you have found music helps. I do visualisations with podcasts and music to sleep. It's too embarrassing to talk about in detail, but if there is something that helps with immersion then sleep comes soon after for me. If I can occupy my horrible brain then I have a chance to sleep.

I really hate sleepers and how addictive they are, but am reconsidering trying them again now, to see if they might knock me out for a bit longer.

I use zopiclone as a last resort to either reset me or the night before something important. If you can manage them healthily then that's great, but it sounds like you know how they start to control sleep completely.

I have flower and oil prescribed for C-PTSD and it's affects on my sleep, but I'm reluctant to encourage people down that road.

Quick Edit: given what is hanging over you it is perfectly fucking normal for your sleep to be wrecked. That would be the case for even the best sleeper. I dunno, give yourself a break?

[Blue Jam]

Ever tried melatonin, @Barry Admin ? It's not licensed for sleep problems in the UK/EU but it's very easy (and perfectly legal) to order from the US. It's frustrating because it's a safe synthetic hormone that promotes natural sleep and isn't dangerous or addictive like sleepers. Used to take a lot of zolpidem myself but I wouldn't touch it now.

Ever tried CBD? I've tried those Trip drinks and they're nice but I suspect the active ingredient is chammomile. Been thinking of trying some high-strength CBD oil but reports of its effectiveness are mixed.

[Minami Minegishi]

Ever tried melatonin, @Barry Admin ? It's not licensed for sleep problems in the UK/EU but it's very easy (and perfectly legal) to order from the US.

I've been taking this for years and find it incredibly useful. In fact I have an entire spare jar if Baz wants them.

[Zetetic]

Hope the tests point to a useful next step, @Barry Admin , whatever that needs to be.

[Schlippy]

It's prescription only, but Modafinil is an alternative that promotes wakefulness during the day instead of using hypnotics to knock you out at night. Doesn't have any of the dependency-forming issues of hypnotics, but obviously anything you're taking that fucks with brain chemistry isn't great in the long term.

Maybe ask the quack if they'd be prepared to give you a short term prescription to see if it can help level your sleeping patterns out?

[Blue Jam]

Incidentally, melatonin is produced by the pineal gland rather than the pituatry, but there are things you can do to regulate its production. Its release is stimulated by low light levels and in theory you should start to produce more around sunset to prepare you for sleep but the process can be disrupted by artificial light sources, especially blue light from screens.

If you're in the market for some glasses it may be worth getting some lenses with the blue light filtering coating, and in the meantime maybe try the eye comfort settings on your phone, laptop etc. It could also be worth shopping for light bulbs with more of a natural colour temperature and replacing any which have a cooler (ie, more blue) colour. A SAD lamp may also help with sleep/wake cycles in the darker months.

I find that I really need daylight to feel properly awake, and I often find myself starting to yawn around 3.30pm in the depths of our Scottish winters. Good lighting makes an absolutely huge difference to me. It's like I have a pineal eye (which would definitely be the name of my prog rock band).