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 Bothered/Vent post

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SyrahSux
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PostSubject: Bothered/Vent post   Mon Sep 21, 2015 5:49 am

Kinda bothered about some thing I was told when seeing the eye and ear specialists.

One of the doctors told me, "If you don't lose weight you'll go blind."
My eyesight is a big thing for me, I draw for a living, I use it as a tension release and therapy for myself, it's the only thing I am good at. Me being able to draw is literally my life and if I lost it I'd be useless.

I'm a habitual stress eater when I deal with my depression or when I'm bothered. Always do it, nothing else works better when I don't have the energy to draw.
Right now I'm munching on leftovers (well it was gonna go bad soon anyway and I hate wasting food with a passion, thanks growing up poor!), plus I'm drinking too much tea since plain water is giving me cramps.

I'm just blegh today and I want to cry.
I'm doubting everything I do and keep blaming myself for getting this thing.

Like the only person who says losing weight might not even help is my GP, while I've got the 8 other doctors(neuros and ophthalmologists) I saw telling me being overweight is a large contributor.
Who do I listen to? 
The GP who has known me since I came to Victoria? 
Or the specialists who have only met me once and don't know my medical history?

Are they just focusing on my weight?

I mean yeah I want to lose it, but I never thought I was that huge to the point where I could make myself sick.
Like, I've always been of big stature, always.
Never had a chronic illness due to my weight apart from migraines/icepick headaches, depression and anxiety. Those things being from when I was a kid.

So there's the added guilt of my partner having to be with me and being stuck with me, he should have way better and he deserves much better then me.
Today is a  censored censored censored censored day.



So yeah, I'm just venting, sorry.
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SyrahSux
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PostSubject: Re: Bothered/Vent post   Mon Sep 21, 2015 5:54 am

Oh, forgot to add!
Both of the sites where I had multiple cannulas STILL hurt. For some reason they love giving you a cannula "JUST IN CASE" the doctor want to give you meds.

They used them twice! Once for the CTA/CTV and the other time when I came in the give me fluids.

But for some reason, even after not using them for 2 days (Oh yeah, they took blood out of a new spot on my arm through a new needle, not even using the cannula, whats the point?)  they insisted on keeping them in and I had about 4 in total because the pain of having them in the crook of my arm was too much.

I mean I know they had to have them there for the scans, but couldn't they have used my hand for fluids or medication if I was only going to be scanned ONCE?

BLAH
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medmisfit
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PostSubject: Re: Bothered/Vent post   Mon Sep 21, 2015 4:49 pm

Oh no, you ARE having a bad day!!! I know IIH can be frustrating and, unfortunately, there are no easy answers. Most professionals focus on the weight because they are trained that IIH affects overweight women of childbearing age. That is the largest population affected by IIH, but it also affects men and children of all ages and sizes. Weight can attribute to symptoms, but weight loss doesn't help everyone. It's definitely worth trying, but NOT a cure all! It's also much easier once symptoms are under control, so the focus should be treating your current symptoms and saving your vision.

The main concern with IIH is vision loss and blindness, but really only an issue if left untreated or they're unable to find a treatment that works. You are taking medication to reduce fluid and pressure, so your vision should be improving. As long as they're monitoring your vision, you should be ok. If medication doesn't work, there are stents, optic nerve sheathing, and shunts..many options before permanent loss, as long as you're actively seeking treatment.

I think it's also important to understand that IIH and side effects from medications can both contribute to depression, so you'll definitely want to keep open communication with whomever is treating your depression and anxiety. This is another area where the symptom log would help. There is also an entire section on the site dedicated to depression, so look it over and let us know if you have any questions or concerns. Hopefully, you'll at least see that you are not alone!

As far as your partner and other people in your life, they'll either understand or they won't. Communication and education is important. Look over the Useful Guides and Printouts section for ideas on how to talk to your family and friends about IIH. And again, let us know if we can help.

We all have bad days and completely understand your frustration, so feel free to vent anytime. We'll do our best to help you through this difficult time!
hug
Julie
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PostSubject: Re: Bothered/Vent post   Mon Sep 21, 2015 6:24 pm

FYI, feeling that down on yourself and life is a symptom of ICP!!!  when I was really sick, I thought about death all the time.  when my ICP would come down, those feelings would just pass away, they were gone.  they are a symptom, they are not real.  try to look at them but not take yourself so seriously.

the docs don't know everything.  weight might not be a huge factor, although you don't know until you lose it, and you really ought to try to.  but no one can say that you made yourself sick and it's not like you knew you would when you gained the weight and it is ridiculous for anyone to blame you for it.  with the crappy processed food everywhere and the food additives and preservatives that mess with our hormonal systems, I don't even think that people are to be blamed for obesity.  many people with IIH have great difficulty losing weight once they start to try, as if there is a metabolic resistance to weight loss, meaning that IT IS NOT YOUR FAULT!

please start telling yourself nice things about yourself.  I am sure you are a much nicer person than I am because you even HAVE a partner, while I don't.

and remember that you can always go for an optic nerve sheath fenestration to try to save your vision, rather than waiting however long it takes to lose the weight and then find out it didn't make a difference.  don't take chances with your vision.  I understand your dismay regarding this illness taking the one thing that means so much to you.  my favorite thing was climbing mountains and singing at the top of my lungs when I got to the top.  with IIH, I couldn't sing without getting really dizzy, and the altitude change going up a mountain would give me a horrible headache.  I am better now, and you will get there too.
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PostSubject: Re: Bothered/Vent post   Tue Sep 22, 2015 5:09 am

I've read through the whole site and taken in what I can, there is lots of good information.

I am trying to lose weight. I've been in the process of trying to for years now!
I have begun eating 3 times a day in small amounts, like a glass of milk or a banana, rather than a small meal at dinner time like normal.
I put on 1kg after losing 3kg while in hospital, where I barely ate at all. Of course I need to account for all the water I'm drinking and such too, but it's really disheartening that I make my self feel sick eating when I don't normally, and it does nothing but put on the weight ridiculous amounts.
Which I know they say "You can't deny maths!" Because if you don't put enough (cal) in you'll lose it, but it really doesn't feel like that me.

Luckily my eyes haven't gotten any worse, and if there's permanent damage it's nothing glasses can't fix. It's more like I'm going through the 7 stages of grief right now ha, acceptance, anger, frustration etc.
It feels like it anyway.

Ever since I can remember I've had depression and anxiety, so it's something I deal with daily. Whether it's attributed to anything or not I dunno. *shrug* Not that I'll do anything silly, I can't leave my cats behind!

It's just the whole...I guess them blaming me for it. They haven't said it's my fault directly but it's how I've interpreted it, very hard not to see it that way. It's just really getting to me, more then anything would for me normally. Guessing I'm used to me blaming myself for something, but when it's someone like a doctor who's 'important' when it comes to health it's kind of a shock. I realize they aren't infallible gods who do no wrong of course but, ya know.

Sophiasmom - Having a partner can't measure for how nice you are. It just means we've learnt to put up with each other and decided to stick around each other for a long time. Us meeting was very by chance and it could have gone way differently.
I'm sure you are a very lovely person inside and out, because you seem like you radiate kindness and care. 

As with many of the people on this site. You all deserve the best in life.

I mean you barely know me and yet there is nothing but kindness and care coming from you all and honestly I think I'd have a worse time if I didn't have somewhere to vent to.

I'm sorry, I know this probably all seems so petty and silly,
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PostSubject: Re: Bothered/Vent post   Tue Sep 22, 2015 7:52 am

nothing is petty and silly.  please don't put yourself down.

please do a google search and review the modified Dandy criteria which are used to diagnose IIH.  please note that obesity is NOT a criteria for the diagnosis of IIH. 

nice to meet another cat person!  at least my cats like me, lol, right?

there are a lot of lifestyle issues that contribute to illness, and none of us can be perfect all the time.  all you can do is try to lose the weight.  my doc just gave me some meds to use that he says will help me lose weight.  one is an injection called trulicity, that appears to act as a sort of pharmacological gastric bypass by slowing down gastric emptying.   I haven't tried it yet.  maybe you could ask your doc to help you out with something like that?  that will put some of the onus on him to help you, rather than implying you are doing something wrong.
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PostSubject: Re: Bothered/Vent post   Tue Sep 22, 2015 8:20 am

My GP doesnt think I have done anything wrong, its all the doctors which saw me in the emergency ward which implied it.
They put me in touch with a nutritionist but I didn't learn anything new.


To be honest my GP's are angels, are very straight with me when they need to be and don't pussy foot around.

Yeah, generally animal people are good people. From what I've found anyway. Smile
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PostSubject: Re: Bothered/Vent post   Tue Sep 22, 2015 7:01 pm

This is definitely the place to come when you're feeling down and frustrated. Please don't feel petty or silly because we've all been there!!!!

Since I was young, I had been told that I was just depressed or it was all in my head. I was treated for "bad cramps" at a very young age and told I just didn't have a high threshold for pain. I just accepted it because they were the professionals, so by the time I was diagnosed with endometriosis I was unable to have children. I was even diagnosed with encephalitis at 16 without any tests and constantly treated for "sinus headaches", which they now think could have been the start of my IIH. Believe me, I understand!

I finally found a GP in the 90's that told me no one knows my body as well as I do, so I should just keep trying until someone finally listens. He also reminded me that I'm the one paying for the service, so I need to question the diagnoses and move on if they're unable or unwilling to back up their claims (I know this isn't always possible depending on your insurance and health system, but the point is stand up for yourself..you are your own best advocate!!!). It took us several years to get diagnoses and even longer to find specialists that knew appropriate treatments, but that was the best advice I have ever received! Only YOU know how you truly feel and whether it's better or worse than your normal.

I think the majority of overweight people with IIH struggle to lose weight. A lot of us have exercise intolerance because any strain brings on symptoms. They're also looking at the way Vitamin A and different things are absorbed in our systems, which may attribute to weight gain. Not to mention the relationship between IIH and hormones. These are all things that would only be known by people who are knowledgeable and keeping up with IIH research. As for the ER, Urgent Care, and general population of "specialists", I think they're taught if an overweight woman of childbearing years presents with IIH symptoms the first form of treatment is weight loss. This takes any responsibility for treatment or follow up off of them..it's the lazy way out, and completely NOT YOUR FAULT.

Most importantly, you need to take care of yourself and find relief from your symptoms! Once you're feeling better you can work on some of the other things, like losing weight. Just be as healthy as your body will allow for now and make small changes as you start feeling better. I'm sure that you're ongoing issues with anxiety and depression don't help matters, but hopefully you can make adjustments to your treatment or at least have someone that's helping you manage those symptoms.

IIH can be tough and a difficult adjustment, so just be patient and kind to yourself while you're working through it. Hopefully, treatments will start helping and you'll work your way out of this funk soon! If not, we'll always be here to listen and support you..
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PostSubject: Re: Bothered/Vent post   Wed Sep 23, 2015 5:16 am

Mmm, I'm getting my birth control out on Thursday, and I'll ask if he thinks it may help and what birth control I should switch to instead.(if any)

Having kids isn't the worst thing for us, but it wouldn't be the best time for the child with us both studying. I'd feel terrible if I had a child and they grew up in a bad home because we don't have enough money.

Then there's the other thought of, what does IIH do to your body when you're pregnant? That time of the month already puts me out of action until it's over as it is.

Would a sign of IIH be me being really "clucky"?
Over where I am, we use that word for someone who wants children really bad. It's been like that lately and my partner has to calm me down. I don't know what comes over me but I just get this intense feeling of "BABIES, NOW", it doesn't really go away.
Like, yeah I'm scared for what could happen but it doesn't take away the want of children.

I can exercise ok, I just can't push myself as hard as I'd like to. Otherwise I'll get dizzy and start getting massive icepick headaches. I know as soon as I feel better from this LP I'm gonna have a run, or at least play with my cats for hours on end. They've been begging me to play fetch and to chase them!

I think the Diamox is helping anyway, I still get the pressure feeling in my head and the eye pain but I'm at a low dosage and am meant to switch up higher sometimes this week. It's nowhere near as bad as it was.
Just having trouble sticking to taking them on time!
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PostSubject: Re: Bothered/Vent post   Wed Sep 23, 2015 5:55 am

Medmisfit - 
I'm sorry! I just realized I read you telling me you were unable to have children then I went on about wanting them! I'm so so so so sorry I don't know why I did that.
Really I'm sorry for your circumstance and that I was so insensitive towards you.
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PostSubject: Re: Bothered/Vent post   Thu Oct 01, 2015 8:32 pm

Not a problem at all..it's been a couple of decades now, so I've come to terms with it. IHRF actually has some good information regarding IIH and pregnancy(http://ihrfoundation.org/hypertension/info/C27 ), as well as other info regarding IIH and research.
They really are a good resource!
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PostSubject: Re: Bothered/Vent post   Fri Oct 02, 2015 4:27 am

I found my discharge papers!

It noted that my pressure was 25, I think that's borderline? I'm not sure. They didn't find anything else and my outpatient appointment is on the 26th. Were trying to catch up with the doctor about what dosage I'm supposed to be on now. It's in the papers but it's a very big jump from 500mg a day so he wants to double check.

I've lost weight, about 5kg since this whole thing started. I don't feel any better but hey, progress!
My eye pain is still there, but I think it's the photosensitivity from the Diamox, since it eases up when I close my eyes and am in the dark.
It makes it hard to study and work though.
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PostSubject: Re: Bothered/Vent post   Mon Oct 05, 2015 4:52 pm

I tend to do better when they slowly increase/decrease medication, so hopefully stepping you up to higher dose. It at least gives your body some time to adjust, but if vision is in jeopardy they've started me on larger doses too.

It's good that you found the discharge info and you have somewhere to follow up!

I hope you continue to make progress and symptoms improve soon Very Happy
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