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 New Member Introduction - diagnosis in progress

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JacobRosen
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PostSubject: New Member Introduction - diagnosis in progress   Wed Apr 02, 2014 5:01 pm

I'm a 51 year old male living in western NY.  Married nearly 25 years with 2 kids (16 and 13).  I have previously been diagnosed with high BP and obstructive sleep apnea.  While not specifically diagnosed, I fit many of the parameters for metabolic syndrome (High BP, high triglycerides, low HDL, abdominal obesity).

I went to eye doctor 2 weeks ago due to increasing changes in vision - blurry areas, spots & lights which worsened with standing up or sitting/lying down.  Field of vision tests showed enlarged blind spots.  Diagnosed with papilledema.  Immediate MRI has shown no structural issues in the brain.  Referred to neurologist who did a visual evoked potential test and ordered a lumbar puncture.  I'm still waiting for the lab results from those but my opening pressure was measured at 320mm.  So I'm quite confident about the IH part, now just waiting to see if there is an identifiable cause or not.

I did just receive the textual result of the MRI evaluation and one thing caught my eye:

There appears to be low T1/high T2 signal in the posterior sella
which may represent a partially empty sella, however the sella is not
optimally evaluated.


I've started researching Empty Sella Syndrome.  It appears that the increased CSF pressure can affect/squeeze the pituitary gland making the sella appear empty.  There seems to be a strong correlation between those pituitary effects and the other metabolic syndrome symptoms.  I'm just not sure yet which is cause and which is effect - does the high BP and apnea cause the IH?  Does the IH cause the other stuff?

I've suspected low testosterone for a while (lethargy, fatigue lowered libido etc) and that factors into this also.  Discussions with my primary care physician are ongoing.

I'd be interested in hearing if any other guys diagnosed with this have any of the same stuff going on, and I'll update this as I hear more.
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JacobRosen
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PostSubject: Re: New Member Introduction - diagnosis in progress   Wed Apr 02, 2014 6:08 pm

As I read through other people's stories here on these boards, I feel like I'm actually pretty lucky so far.  I get the occasional mild headache but nothing like some of those I've seen described.

Thought I'd add that as we wait for results from the LP, my primary care has added lisinopril as another med for my BP.  I've been taking hydrochlorothiazide, a diuretic, for that for about a year.  Considering diuretics seem to be the first course of IIH meds and I've developed the symptoms of it while on one I'm not sure what effect they'll have.  I do however have real reservations about installing a shunt if that is the way they end up going.
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Heidi
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PostSubject: Re: New Member Introduction - diagnosis in progress   Wed Apr 02, 2014 6:21 pm

This topic has come up before and you can find it here [You must be registered and logged in to see this link.] which you might like to read. Has a shunt been suggested? Usually they shunt you when the CSF is causing vision loss or they can't manage it with the usual medications. I think they most likely want to treat you with medication first to try and bring your symptoms under control.

If you have any questions no matter how many please do ask, we're more than happy to answer them.
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JacobRosen
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PostSubject: Re: New Member Introduction - diagnosis in progress   Wed Apr 02, 2014 7:19 pm

Heidi, no shunt has been discussed yet I'm just thinking ahead to the probable initial course of treatment, and the fact that I'm already on a diuretic and having the symptoms I have.
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Wylee
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PostSubject: Re: New Member Introduction - diagnosis in progress   Wed Apr 02, 2014 7:29 pm

Hello Jacob and  Welcome 

So glad that you have found this website.  There's a great deal of info available here, as well as being able to talk to otters who understand what you have been going through.  We don'y have that many male members, but that may be because IIH tends to affect females more often, or so it seems.  That may be just being misdiagnosed.  Some of our guys were told they can't possibly have IIH just because they are men.  Even the doctors have a lot to learn about this one.

You are indeed fortunate to not be dealing with the headaches which are very common with IIH.  Visual disturbances often dictate course of action.  Your vision can change rapidly due to the internal pressure, so a close watch is required.  Are you seeing a Neuro-Ophthalmologist?  They are often the best at dealing with Paps.  And Diamox (acetazolamide) is the most common diuretic prescribed to help get that pressure down, to save your vision.

Looking forward to hearing more from you about your journey with IIH.  Oh, we do recommend keeping a medication/symptom log which will help you and your docs to figure out what works, what doesn't.  There are some on this site.  They can be found here:  [You must be registered and logged in to see this link.]
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medmisfit
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PostSubject: Re: New Member Introduction - diagnosis in progress   Wed Apr 02, 2014 8:25 pm

Hi Robert, welcome to the group! Unfortunately, IIH is such a rare disease I think they're still trying to figure out the cause and effect aspects. It has been linked to hormones and other systems, so I'm sure many of our members will be very interested to hear anything you learn!

Although your current medication has a diuretic in it, it's potency doesn't compare to the medications used for IIH treatment. I take a similar medication for blood pressure and was prescribed 2 other diuretics at one point. They'll start slow and increase doses as long as you can tolerate the side effects. If IIH continues to effect your vision or side effects are unbearable, they may suggest a shunt. It can be a long process, so let us know if you have any other questions or concerns.

Take care,
Julie
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JacobRosen
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PostSubject: Re: New Member Introduction - diagnosis in progress   Wed Apr 02, 2014 8:27 pm

Thanks, Wylee.

Otters? Smile

And yes I've seen where IIH mostly affects women in their child-bearing years.  I'm very much the opposite of that.  That's what has me wondering about the low-testosterone aspect though.  If found (I have blood testing set for next week to check on it) maybe we've actually found a cause and I'm not idiopathic after all.
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JacobRosen
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PostSubject: Re: New Member Introduction - diagnosis in progress   Thu Apr 03, 2014 12:33 am

[You must be registered and logged in to see this link.] wrote:
Hi Robert, welcome to the group! Unfortunately, IIH is such a rare disease I think they're still trying to figure out the cause and effect aspects. It has been linked to hormones and other systems, so I'm sure many of our members will be very interested to hear anything you learn!

Although your current medication has a diuretic in it, it's potency doesn't compare to the medications used for IIH treatment. I take a similar medication for blood pressure and was prescribed 2 other diuretics at one point. They'll start slow and increase doses as long as you can tolerate the side effects. If IIH continues to effect your vision or side effects are unbearable, they may suggest a shunt. It can be a long process, so let us know if you have any other questions or concerns.

Take care,
Julie

Thanks for that info, Julie.  Yeah, my primary care (fairly young) Dr is reading up on it having never come across it before.

I've been researching acetazolamide.  As somebody with a previous allergic reaction to Sulfa, I think that one is probably off the table for me.
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medmisfit
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PostSubject: Re: New Member Introduction - diagnosis in progress   Thu Apr 03, 2014 3:15 pm

There are several options available (Diamox, Lasix, Topamax, etc). You can look through the IIH and Medication section for more info. I'm glad your primary physician is educating themselves..at least it shows they're making an effort!
 
I was diagnosed by a neuro-ophthamologist, so he monitored medications at first. I was eventually referred to neurologist, who took over medication management when neurosurgeon wasn't involved. I'm sure you'll get a referral once they review test results, but you can always request one if needed. They use LP to confirm IIH diagnosis, so hopefully it's just a matter of time.
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JacobRosen
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PostSubject: Re: New Member Introduction - diagnosis in progress   Tue Apr 22, 2014 7:44 pm

UPDATE:  LP analysis came back normal.  Additional blood work also came back normal except 1 test (the one I was least worried about) - Vitamin A.  Normal range 20-50, I came in at 77.  Considering I don't each any organ meat and don't take supplements I was not worried about it although I knew it has a known correlation with IIH.  SO...  started low dose of acetazolamide to make sure I could tolerate it.  Went on low fat, low sodium diet and increased exercise.  It's been about 10 days now, and I'm down 10 pounds.  I know most of that is fluid weight but I'm still pretty psyched about it.  Had an MRV taken which also came back normal.  I've gone from 250 mg acetazolamide to 500 mg / day and not seeing any allergy type issues so apparently it's different enough from sulfa that I'm not reacting.

I've got a goal of cutting weight by 10%.
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Wylee
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PostSubject: Re: New Member Introduction - diagnosis in progress   Wed Apr 23, 2014 4:28 am

Excellent report.  I too am allergic to sulfa but am able to take Diamox without issue.  I've been on it since August 2010, doses varied depending on what we were trying to do.  Weight loss is reported to be a welcomed side effect of Diamox.  Glad to hear it is working for you.
Please keep us informed.
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JacobRosen
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PostSubject: Re: New Member Introduction - diagnosis in progress   Thu May 22, 2014 5:01 pm

Latest update:  I'm not quite 6 weeks into treatment.  I'm doing yoga, walking 3-4 times / week, and golfing twice/week.  The change in diet is going well.  I'm down 20 pounds now - first goal is only 7 away.  They've had to cut my BP meds, as my last measurement by my primary care was 102/70 - I'm continuing to monitor.  I'll be starting a cardio/workout program here in the next week or 2.  My more aggressive goal is now to be back at (or below!) my wedding weight by my 25th anniversary on 9/16.  24 more pounds gets me there.  My visual symptoms have pretty much cleared up, and no more rushing in the ears either.  My next follow up with the neurologist is in 2 weeks, and we'll see where we go from there.
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Heidi
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PostSubject: Re: New Member Introduction - diagnosis in progress   Thu May 22, 2014 10:30 pm

So good to hear you're doing so well. It is always great news when a members progress with IIH is so positive and productive. Well done on the weightloss!
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Wylee
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PostSubject: Re: New Member Introduction - diagnosis in progress   Fri May 23, 2014 2:09 am

woohoo  woohoo
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medmisfit
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PostSubject: Re: New Member Introduction - diagnosis in progress   Fri May 23, 2014 4:28 pm

That's great news!!! I'm glad the weight loss and treatments have helped..thanks for sharing!

 :well done
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