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 I'm one big IIH Mess! Looking for guidnece

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Lainie
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PostSubject: I'm one big IIH Mess! Looking for guidnece   Thu Feb 09, 2017 4:42 pm

Hi All,
I'm sorry in advance if this post becomes a novel. I will try to keep it as short as I can. I was diagnosed Sept 27, 2016 with an opening LP pressure of 45, horrible pressure headache and grade 2 papilledema. No MRI was done. I had a CT with dye and it showed narrowing of my transverse sinuses. I was put on a 1000mg of diamox.
In the past 4 months I have lost 60 lbs and have 50 lbs left to lose to be at my ideal BMI. I have not tolerated the diamox very well. I have had to lower my dose over the past few months and now I'm on 250 mg a day. Reason being, it is causing me issues with my kidneys. Low biocarbonate, kidney pain. Crystals, protein, and blood in urine, yet no kidney stone to be found.. So I'm tapering off.
My papilledema has almost fully resolved in my left eye, however my right eye is still grade 1. Blurry vision, floaters, light flashes. ect..
My neuro-op brushes me off because he says I'm improving. I feel like I'm falling a apart and no one takes this seriously.
My headaches are horrible again since going down another pill to the 250 mg dose 4 days ago. Actually I have had only breif intermissions with no headahes. I usually have some sort of headache happening. Sinus pressure ect..I don't know if my headaches have been diamox headaches, low pressure, high pressure, I have no clue. Dr says, I may just have to live with it for the rest of my life. I won't subscribe to that.
I have not missed a day of work, no matter how bad it gets. I'm just desperately trying to hold on to my normal life. I have been proactive in losing weight. I am trying to stay positive and get myself to remission.
My questions are:
1- Has anyone else had to come off diamox for kidney issues, and if so, what were you given to replace it?
2- Has anyone ever had a stubborn papilledema that just wont resolve? If so, how was it treated?

Sorry for the long post! Thank you all for reading <3
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medmisfit
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PostSubject: Re: I'm one big IIH Mess! Looking for guidnece   Thu Feb 09, 2017 6:18 pm

Lainie, I'm sorry to hear that your neuro-ophthalmologist isn't more supportive! Do you have another physician that seems to listen or provide support? They may be able to provide referral to another neuro-ophthalmologist if you don't feel like this one is listening. It seems like you're doing all you can and losing weight isn't easy, so they should be congratulating you and talking about other options.

I did well with Diamox initially, but couldn't tolerate it the second time. It didn't affect my kidneys, but there are other options if the diuretics aren't good for you. It makes sense that symptoms are increasing as they decrease the Diamox because it's no longer keeping CSF down. Are they replacing it with anything?

Here's a link to other medications.. http://www.ihaveiih.com/t276-diamox-acetazolamide-lasix-furosemide-methazolomide. They can also do stents, optic nerve sheathing, and shunts. That info can be found in "Living with IIH" and "General Information" sections.

A lot of things can affect intracranial pressure..environment, weather, sinus, allergy, food, etc. You may want to keep a symptom log to see if you can detect some triggers. Here's an example of a log we provide.. http://www.ihaveiih.com/t59-i-have-iih-symptom-log

You may also want to talk to your physician about applying for FMLA, if you're in the states. It provides up to 12 weeks of leave each year that your employer cannot use against you. Send me a private message, if you'd like more information about it.

Keep us posted and let us know if you have any further questions.

Take care,
Julie
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Lainie
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PostSubject: Re: I'm one big IIH Mess! Looking for guidnece   Thu Feb 09, 2017 7:02 pm

Hi Julie,

Thank you so much for your fast reply! I will check those links out. I have noticed certain foods trigger me, so I stay clear of them as I find them.
I live in Canada and there are not many neuro-ophthalmologists to choose from. My GP knows nothing about this disease, and has made no effort to learn anything about it. She has referred me to another neuro-ophthalmologist who does the stent surgery, but he refused the referral, stating it needed to come from my current N-O, so.. I feel stuck! We are trying another N-O 2 hours away from me, who also does the surgery and specializes in IIH. So fingers crossed that this one will accept the referral, and get me in soon.
My current N-O has not offered to replace the diamox with anything. He just said go down to 250 mg and I'll see you in 6 months! It was actually me who did the research on diamox and told him to check my blood to make sure my kidneys were tolerating it. He said it was unnecessary, but gave me the req anyways. Thank God for that because my bicarbonate was at 16, I was on the verge of metabolic acidosis. It also took him two weeks to call me to let me know that...
So.. until I can find a dr that understands this disease and takes it seriously, I am on my own. I do the research, then go back to the N-O and see what he says. He's usually agitated with me because I want a more proactive approach with regular visits and eye exams, and he thinks I'm questioning his skills as a dr. I'm just a desperate girl trying to get answers and get well, fighting against a dr's ego.
Very happy that I found this forum. Lot's of great info to read through.
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Sophiasmom
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PostSubject: Re: I'm one big IIH Mess! Looking for guidnece   Fri Feb 10, 2017 1:10 am

ouch!  find a different NO fast!  you should be on something to actively be reversing your papilledema, meaning if he's weaning the Diamox, he should be replacing it.  maybe ONSF would be a good idea.
congrats on that weight loss, that's amazing!
you may want to look into getting checked for obstructive sleep apnea, it's a high likelihood being overweight.  OSA can cause IIH or make it worse.  is anyone talking about the transverse sinus narrowing?  you might be a candidate for a stent.  it might be a good idea to find a neurosurgeon at a university to ask about this.
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Lainie
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PostSubject: Re: I'm one big IIH Mess! Looking for guidnece   Fri Feb 10, 2017 1:39 am

I have been doing research on the stent surgery. Trying to get into another NO has been difficult for me. My NO said the transverse sinuses were just a result of the IIH. No one has mentioned sleep apnea. I know at my heaviest I did have issues with that. I'm definitely at a dead end with this NO. Praying I can get into another one soon. 
What is an ONSF? 

Sorry. I'm a newbie. Lol
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medmisfit
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PostSubject: Re: I'm one big IIH Mess! Looking for guidnece   Fri Feb 10, 2017 9:03 pm

Hi Lanie! Unfortunately, I don't know much about the healthcare system in Canada. I hope the new referral works out and the new neuro-ophthalmologist is more supportive or at least knowledgeable. We do tend to have to advocate for ourselves and educate our physicians/specialists, so it can be disheartening. IIH is a rare and not life threatening, so not a lot of funds are allocated for research. It also seems like the majority of information they have is biased and out of date. The IHRF is the lead on research for IIH and you may find the most reliable/current information on their site (www.ihrfoundation.org).

ONSF is optic nerve sheath fenestration. They basically slit the optic nerve to help relieve some pressure and save vision. It's one of the treatment options available, like the stent and shunts.

We will do our best to support you through the process, so just keep us posted and let us know if you have any questions!
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Sophiasmom
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PostSubject: Re: I'm one big IIH Mess! Looking for guidnece   Fri Feb 10, 2017 10:58 pm

the transverse sinus narrowing can be secondary to the ICP, however, the collapsibility of these veins can set up a vicious cycle where the ICP is perpetuated by the fact that the pressure in the veins goes up from the compression. stenting these veins can be helpful.  it is worth seeing a specialist on this topic to determine if you might be a candidate.

ONSF is optic nerve sheath fenestration.  it can take the pressure off the nerves to prevent vision loss.  it won't fix the overall ICP, but it can spare the optic nerves.  

treating my OSA was the only thing that did anything for my IIH.  I couldn't tolerate the medications.  after jaw surgery, Lasix helps when I have mild symptoms, but I'm mostly in remission.  so if you know it's been an issue, I would recommend getting that checked.
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Lainie
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PostSubject: Re: I'm one big IIH Mess! Looking for guidnece   Mon Feb 13, 2017 3:23 pm

Thank you both for your responses and all that information. Going to get a referral tomorrow for another NO. Gotta keep fighting. Hopefully one day soon, I will be on this forum offering support to others from a knowledgeable and functional position :-)
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medmisfit
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PostSubject: Re: I'm one big IIH Mess! Looking for guidnece   Mon Feb 13, 2017 4:43 pm

Yes, I look forward to that Lainie!!!
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