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 Intro - Diagnosed 2015

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SyrahSux
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PostSubject: Intro - Diagnosed 2015   Wed Sep 16, 2015 1:58 pm

Hello, I'm Jane!
I'm an aussie, 23 year old student.

I've had constant pressure in my head, along with headaches, not sleeping at night, nausea and stomach issues like reflux and upchucking, the feeling of a blocked sinus, tinnitus (though to be fair I've had it for YEARS and YEARS), lethargy and a whole other handful of problems for most of this year.
Seeing the doctor didn't help, I had many brain scans over the past few years and nothing came back on those.
He treated the symptoms and they kept coming back, so both of us were rightly confused.

Anyway, in a routine eye checkup, they noticed my right optic nerve was swollen, so I was referred out to a specialist. It took about 1-2 months to get in to see them, and another $120 for tests/scans/photos I didn't get to take home! (Damn you medicare)
When I got to the eye clinic was diagnosed with papillodema and IIH, went to a nuero-opthamologist friday where they confirmed, went into Emergency Saturday night because my right eye started to lose vision.

Long story short, I got prodded, poked, those awful CT scans which make me feel like I'm having a panic attack, and finally on Sunday I got my first LP. They failed it and spent a good 40 minutes poking around the nerves in my back unable to get to the sweet spot.
Monday I got a second LP, they got it first go, and apparently the pressure was normal? Though they said I could have been leaking due to the failed LP the day before.

The CT was also normal, and I'm being booked in for an MRI as an outpatient to check up on my brain. The CT scans came back normal or clear with no proof of fluid buildup either. All in all I'm very confused.
I have the symptoms, and diagnosis, but the results of my tests say otherwise, apart from the LP.

That said how long till I can sleep on my side again, or intense exercise? They didn't tell me anything apart from "Lay down for 2 hours flat and don't move." Though I bent over too much in the shower today and felt that fluid headache coming on.

So, all that in the span of a week or so.
That said I feel blessed to hve gone to the hospital I did, the nurses and doctors were absolutely amazing and super supportive!

I'm thinking of requesting the results of the tests to try and understand it. But so far I've just been told it's because I'm fat(160cm, 94kg), which I can understand.
You wouldn't believe how scared the doctors are of offending you when it comes to weight! I mean, you can't be fat without knowing it right?

So, now I'm on 500mg of Diamox a day and they're weaning me up to a higher dosage next week. I can already feel the pressure in my head returning, along with the eye pains.

How long does Diamox take to do it's job of reducing pressure?

Mostly about all this, I'm bummed out I did this to myself by not losing weight when I could.
On another note, it's good to know I'm not crazy and all these feelings aren't "In my head.".

Sorry, I'm rambling, I'm just really excited that I'm not alone or crazy and this site is full of some wicked resources.
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medmisfit
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PostSubject: Re: Intro - Diagnosed 2015   Thu Sep 17, 2015 10:13 pm

Hi Jane, welcome to the group! I'm sorry to hear you've endured so much in such a short period of time. I honestly can't believe they did the LP's so close together and can almost guarantee the results were affected.

I also wanted to let you know that weight loss has helped some members, but it doesn't always help. IIH affects people of all sizes, genders, ages, etc. There are even some of us that didn't gain the weight until after we became sedentary with IIH..please don't beat yourself up! We try to encourage members to be as healthy as they can, but all know it isn't always easy. If vision is affected, you have to get pressure down any way you can and quickly..that's the main priority. You can address weight once vision is stable and symptoms have improved.

The MRI and CT won't show anything, if you have IIH. Really the only way for testing at this point is the LP. They recommend resting for 24 hours following a LP, but that varies based on the experience. The pressure range should just be used as a guide because everyone's "normal" is different. It also fluctuates. I used to need my pressure to be below 10 to get relief from symptoms, but now I function better when it's at 20. They confirmed my diagnosis because my symptoms went away after they drained some fluid, but my opening pressure was only 18 at that point. I luckily had a very supportive neuro-ophthalmologist that advocated for IIH diagnosis and treatment because my symptoms went away when they reduced my CSF level.

Unfortunately, treatments affect everyone differently. We recommend keeping a symptom log because it can help you identify any triggers, improvements, or worsening of symptoms. Here is an example  http://www.ihaveiih.com/t59-i-have-iih-symptom-log, if interested. The medications have side effects that some members can't tolerate. Here's a list of medications most often used and links to more information regarding each one http://www.ihaveiih.com/f28-information-and-resources. You can find more information throughout the site.

Let us know if you have any questions or need further information.

Take care,
Julie
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SyrahSux
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PostSubject: Re: Intro - Diagnosed 2015   Fri Sep 18, 2015 5:29 am

Thank you for the warm welcome! <3

I've always tried to be healthy, and technically I am. I'm overweight but have no issues from it, stamina wise an all that. Though they (the neurologists+ophthalmologists) think it's the weight that caused it, at least they heavily implied it.
My GP on the other hand thinks it's not the weight that did it and it's not even guaranteed to help if I lost it.
I'm so glad he knew about it when I him today! When he asked what medication I was put on he knew straight away I had IIH. Plus he was really knowledgeable on it. He says the puncture site looks good and I might still be achey for a bit. All my stats are very normal.

So I got referred to the dietitian though it will be a while before I can see them since there's a waiting list.

I noticed after the LP my head felt so, so, so much better, no pressure in my ears, sinus or head. It felt so good. I still got the low pressure headache behind my eye for a little if I stood up to quick, but I think it was my body getting used to it.
I cant blame the dude for messing the first one up, it was a very cramped and busy space. The second one we had more room for movement. But yeah, kinda bummed that the results were inconclusive. So, whether I get another one depending on how treatment goes or not, I'll see.
Anyway thank you for all the helpful information!

Luckily the Diamox isn't bad right now, though I'm only on 500mg a day. I admit the first day I took it the tingling was really bad (even in my teeth! I didnt know they could tingle! Plus the nose tingles were weird), but right now I don't notice it.
The pressure is a tiny bit less but my eyes are still hurting, so I'm guessing that fixes in time.
My GP said to wait until my vision is better before doing more intense exercises, since he's worried I could trip and fall a lot.
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Sophiasmom
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PostSubject: Re: Intro - Diagnosed 2015   Sat Sep 19, 2015 5:51 am

sleep apnea can cause insomnia, and it can cause IIH.  AND it can cause papilledema in the absence of an elevated ICP while awake.  the ICP can spike only while sleeping during apneas, and cause the optic nerve swelling.  and people with sleep apnea are worse if they sleep on their backs.  if you are such a devoted side sleeper that you mention it here and worry about when you can sleep on your side again, you have to consider this.  sleep apnea is very prevalent in people who are overweight.  one study I read said about 35%, but I think it's closer to 100%.  so, losing weight can help both OSA and IIH. but, losing weight didn't help me.  my airway was about 1-2mm in diameter, so weight loss did nothing.  my IIH went into remission when I had jaw surgery and got my airway up to 14mm.

next time you have an LP, make sure they do it under fluoroscopy.  that should prevent all the blind poking around.
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SyrahSux
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PostSubject: Re: Intro - Diagnosed 2015   Sat Sep 19, 2015 7:05 am

The place I got my LP done at didn't have the facilities to do fluoroscopy. I was booked in somewhere that did for in the next week or so, but since I had a sudden decrease in vision I went to emergency and they did it in the hospital where I went instead.

My ma says I have sleep apnea, but I have no idea if that's the case. She never had me tested as a kid or anything, she says it because I used to snore a bit or will choke when I'm on my back sleeping. It's no where near like that anymore, and I just avoid foods that trigger the snoring now, and I have no troubles Smile
I will admit shedding a few kilo has helped a tiny bit with that too, but mostly it's my sleeping position since I drool in my sleep, the choking and snoring is from that.

I think I will ask my GP about a sleep study though, just to check and see, since I do have trouble sleeping and was always fatigued BEFORE the diagnosis for years. Hopefully he will have all my discharge notes soon so we can discuss things and I don't have to keep running after 6 different doctors!

Thank you for the advice!
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Sophiasmom
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PostSubject: Re: Intro - Diagnosed 2015   Sat Sep 19, 2015 8:08 am

OSA causes mouth breathing and drooling, and mouth breathing causes OSA.
the choking and snoring is from OSA.
you can have UARS and NOT snore.
certainly do all you can not to sleep on your back, as it will be worse like that.  do all you can to keep your nose patent so that you do not mouth breathe.  dr. steven park has a lot of info on his site about it.
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SyrahSux
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PostSubject: Re: Intro - Diagnosed 2015   Sat Sep 19, 2015 12:49 pm

Sounds good! Thank you so so so much.

I see my GP on Monday so we can discuss a sleep study then.
I've found I can sleep on my side if I put a pillow under my hip so my back stays straight, otherwise after 10 minutes or so it'll get achey. Otherwise I sit up and sleep. Smile

Honestly the worst part about hospital is sleeping on my back cause I got a curved spine like my ma.
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medmisfit
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PostSubject: Re: Intro - Diagnosed 2015   Mon Sep 21, 2015 4:28 pm

I'm glad to hear your GP was knowledgeable and supportive! Weight loss and sleep apnea treatment has helped some members with their IIH symptoms, so it's always worth a try. Honestly, anything you can rule out helps narrow down the cause and treatment options.

Good luck with it all!!! Please keep us posted Smile
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