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 Not overweight when diagnosed?

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pleasehelp29
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PostSubject: Not overweight when diagnosed?   Sat Mar 30, 2013 11:13 pm

Not overweight when diagnosed

I am considered (by most physicians) an atypical IIH patient in that I was not overweight when diagnosed and have even lost 30 pounds since my diagnosis.

I know there must be more people out there who, like me, fall in this category.

If you do...would you please leave a response below and perhaps briefly mention your medical story?

Or even better, could you send me an email so that I can correspond with you easier?

My father is a physician and he and I (especially him) have been studying IIH extensively for over 3 years, looking hard for the mechanisms behind high intracranial pressure, especially for people who are not overweight.

If either of us could help you, answer a question, or do anything at all for you don't hesitate to send us a message! Sometimes it just helps to have a medical doctor's perspective.

my email is [You must be registered and logged in to see this link.]

all the best,
Austin

P.S. My medical story with pictures, imaging, etc is here: [You must be registered and logged in to see this link.]



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sammyjo
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PostSubject: Re: Not overweight when diagnosed?   Sun Mar 31, 2013 12:04 am

my iih is not because of being over waight but because i was brutaly beaten 10yrs ago by a big gand and the sponge things at the back of my head got damaged and my brain could then not get rid of fluid x
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Heidi
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PostSubject: Re: Not overweight when diagnosed?   Sun Mar 31, 2013 1:05 pm

I wasn't overweight when diagnosed it was caused by pregnancy. Investigations led to the trigger being found to be hormonal.
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PostSubject: Re: Not overweight when diagnosed?   Sun Mar 31, 2013 5:10 pm

Hi, Austin.

I have talked to you and your dad, so you probably know all this. I am 5'10" tall. I was 180 lbs when diagnosed. When i became symptomatic, i lost about 20 lbs. my ptc is probably secondary and was most likely triggered by an antibiotic levaquin.

Mark
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pleasehelp29
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PostSubject: Re: Not overweight when diagnosed?   Mon Apr 01, 2013 11:54 pm

sammyjo, I'm sorry that you had to suffer such brutal trauma.

Heidi, that makes sense considering the affect the hormones play with IIH. I wonder if intra-abdominal pressure possibly causing obstructed venous return could have caused your IIH? Have you ever considered that idea?

hey Mark, I agree that Levaquin was probably the culprit in your case.



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PostSubject: Re: Not overweight when diagnosed?   Wed Apr 24, 2013 9:45 am

My 25 year old daughter was not overweight - she only weighed about 105 pounds at 5'3". No one has been able to give any reason for her to develop this condition. I post her picture so people can see she was a petite thing! Since having it - she has now put on weight! Does the condition make people gain weight? But she has had 6 surgeries in 10 months for shunts, shunt revisions, meningitis and shunt removals... Very sick. This is a very sad disease.

Hope you are better.
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Meganw
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PostSubject: Re: Not overweight when diagnosed?   Sun Jun 02, 2013 10:14 pm

Hello I was recently diagnosed but have been suffering for 16 years. We have no definitive reason for my IIH but I did have head trauma from a car accident and my headaches started after that. I also have a particularly virulent form of endometriosis that is resistant to treatment and have surgery annually to remove as much of it as possible. If IIH is linked to hormones this could be related. I am 5' 10" and weighed145 at time of diagnosis. My weight has fluctuated over the last 16 years from 135-170 which was overweight but I immediately lost the weight. I still don't think weight was an issue for me as the high point of my weight was the year after I was married and I lost the weight soon. I would love to know why I have this condition.
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Wylee
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PostSubject: Re: Not overweight when diagnosed?   Tue Jun 04, 2013 1:50 am

Megan, it is believed that the "usual" IIH patient is an overweight female of child bearing age. That being said, we have many members who were thin when their symptoms first started, and some post menopausal. And then we have our guys. So, for many, there is no known reason, hence the name idiopathic, which means exactly that, of unknown cause.
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sherry52
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PostSubject: Re: Not overweight when diagnosed?   Wed Aug 07, 2013 4:34 am

Yes! I was diagnosed when I weighed 158, I am 5'11" and was 58 when diagnosed.  The neurologist looked perplexed and said "You don't fit the profile, you're not overweight."  And I said, "and I'm not young"  All we could figure was it might be a result of a car accident that twisted my neck pretty severely.
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Sophiasmom
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PostSubject: Re: Not overweight when diagnosed?   Fri Aug 09, 2013 8:07 am

obesity is not one of the modified Dandy criteria.
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chemistrygeek
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PostSubject: Re: Not overweight when diagnosed?   Fri Aug 09, 2013 10:42 am

I was recently diagnosed, and am actually quite underweight(I am 5'8" and weigh about 110 pounds). I got my IIH from a bout of meningitis. My first neuro(I'm on my second now) didn't believe it could be IIH when I was clearly showing signs of pressure isssues(visual problems, headache that gets worse when laying down or coughing, etc.) simply because I wasn't overweight.
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MarkyMark
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PostSubject: Re: Not overweight when diagnosed?   Fri Aug 09, 2013 2:43 pm

I have recently had discussions with several of the guys about this. It seems as if most of us have secondary causes, medications mostly. There, of course, is no way of knowing how much SIH has in common with IIH, since, by definition, the cause is unknown for IIH. However, I suspect that what happens is that we each have a number of drainage pathways for CSF. As more of the pathways get clogged or shut down, the CSF pressure builds. Those of us that are susceptible to this thing most likely have physical attributes or had traumas that shut some of the pathways (e.g. sinuses, veinous returns like the jugular, lymph, etc) down. Then, when the pressure increases because of intra-abdominal pressure, medications, or whatever, any small perturbations set off an increase in pressure that our bodies cannot handle. Then, we are stuck in a vicious cycle.  Just a guess of course
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Sophiasmom
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PostSubject: Re: Not overweight when diagnosed?   Sat Aug 10, 2013 2:42 am

I think that sounds logical, I suspect you are on to something.  it would explain why many of us had mild symptoms going back years as if you could look back in retrospect and see it coming but it was only the last insult that pushed us over the edge.
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Wylee
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PostSubject: Re: Not overweight when diagnosed?   Wed Aug 14, 2013 8:17 pm

I wonder if the overweight is just it's connection with higher blood pressure?  I find that my body feels the difference when I gain 5 pounds, including increase in headache frequency and intensity.  Now that I am on Verapamil, used for blood pressure and migraines, my head feels better.
And, as Mark explained, I am one of those who has SIH, the docs know the cause of my raised pressure, they think anyway.  For me, it was the zoster virus that plugged up the drainage holes in my head.  Like a stuck thermostat, my pressure builds to a point, which is higher than it should be, but does release the spent fluid which may be why my symptoms fluctuated.  Having a shunt seems to keep things at a more even keel.  Just as not everyone develops pap, not all IIH'ers are female, or overweight, or of child bearing age!!
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Sophiasmom
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PostSubject: Re: Not overweight when diagnosed?   Thu Aug 15, 2013 2:30 am

well overweight does more than increase BP.  it increases something else too.  the IHRF actually DOES talk about it in their 2011 conference.

Mark and I have wondered if antihypertensive agents would help by decreasing central venous pressure.  thanks for posting about your response to Verapamil.  I've heard there is another woman who had significant improvement in IIH with Verapamil.  I think that Inderal helps me.  also, in the presence of a dysfunctional blood-brain barrier, arterial pressure can be transmitted to CSF pressure.
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