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Headaches another cause..IIH
#174435 05/13/10 07:41 PM
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Hi everyone.

I have ankylosing spondylitis and intracranial hypertension. Intracranial hypertension is a nasty disease that causes a person to have too much spinal fluid and in response to that gives the person lots of headaches. I have notices the amounts of headache complaints that people have posted on here and I have been wondering if maybe this could be the case. IIH is very underdiagnosed. Lupus is one of the autoimmune diseases known to bring it on and according to the Intracranial Hypertension Research Foundation they told me they cannot rule out AS as a cause of my IIH because it is also a systemic inflammatory autoimmune condition not unlike that of Lupus. I am just curious has anyone been diagnosed with this condition? It was once called pseudotumor cerebri or idiopathic intracranial hypertension.

For more info you can visit www.ihrf.org it's intracranial hypertension research foundation

I have had AS since I was 16, but the IIH was discovered 2yrs ago when my eyesight started to go and I gradually started to go blind.

Thanks
Stacey


Re: Headaches another cause..IIH
svogrinec #174442 05/13/10 11:09 PM
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I have IH... I've had it since I was 26...now I'm 40... I'm sure many doctors would say that weight is a factor. But many of them who have IH are not overweight. I did lose 160 lbs due to weight loss surgery and it seems to help... But I do still check in with the neuro-ophlamologist every year... so far, since the surgery in 2008, I've not had eye problems or high "spinal pressure"--- but once in a while if I eat really salty foods, my left eye would be "cloudy" for just few minutes on and off.


1998-2004 Rheumatoid Arthritis, remission 2004-2010, March 2010 to May 2014 (RA, AS, Inflammatory Arth, PsA) Enbrel user-use 25 mg pre-mixed 3x a week.(pre-mix has no latex)(Allergic to "Sure Click Enbrel"-has latex) Remicade June 2014 to current (Grandfather had AS, PsA) "We will intuitively know how to handle situations which used to baffle us."
Re: Headaches another cause..IIH
diehardhusky11 #174453 05/14/10 01:23 AM
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I am currently having problems with my eyes. I am losing vision rapidly. (went from a 20/20 script to 20/30 in four months and also have intermediate damage to both optic nerves.) So far they can't tell me why. I see the optic neurologist on May 27. I have a lot of pain and pressure behind my left eye and get wicked headaches that last for days. Also am very sun sensitive during these times. Does this sound familiar to you? Any info you can give would be helpful. The link you put up didn't work.

Thanks and God bless,
Nisey


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Re: Headaches another cause..IIH
nisey #174456 05/14/10 02:21 AM
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I'm am SO glad you posted this! I have had that pulsing sound in my ears since I was itty bitty! I used to think someone was walking outside my bedroom window! As I grew older - I began to find a little comfort when i'd hear it, particularly at night. It was a familiar sound/feeling. you know? I always wondered what it was. My eyesight has dimished a LOT over the last several years. And of course I've had severe headaches since I was 16 (so 21 years now). I checked out the other symptoms and they really seem to fit a lot of things that I'm going thru - and may be an answer to why the rheumys can't find a good solid diagnosis for me? I don't know. The next step for my neuro anyway was a lumbar puncture - I go back and see her the first week in June - so I'm definitely brining this to her attention! I've mentioned most of these symptoms but never mentioned the whooshing sound in my ears! Thanks for posting this!

Re: Headaches another cause..IIH
melaniej #174780 05/19/10 08:14 AM
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Hi Again!

Sorry my link didn't work, I forgot I had to type out the word "foundation".. here is the link again.

http://www.ihrfoundation.org/

It is rather interesting to see how intertwined our issues can be... I was just put on prednisone over the weekend and my IIH has seemed to lessen a bit. I see my neuro-optho tomorrow so I plan on discussing this with him.

I think that the IIH causes people to be overweight with the extra added fluid retention. I have noticed and provided the IIH registry with feedback every year from my doctors with my health information about my weight and swelling symptoms vs. IIH symptoms. My weight goes up in tandem with the increase in the pressure in my head and the symptoms of the IIH. I also experience alot of fluid retention and peripheral swelling as well as swelling in my abdomen when the pressure is high. When I am treated with mega doses of Diamox and other diuretics the weight falls off dramatically and then I see the IIH gradually start to resolve/lessen. I lost 60lbs very fast, in a matter of a few months from excess water retention without any change in diet or exercise. So I do not in my opinion think that this is a disease of someone who is just from being fat. I think the disease causes us to be fat and I told the registry this and in the last news letter I received they have found evidence to this as well. Only time will nail it down though...more research is needed they say!

Any how...I was just curious how many of us with AS might have IIH too since it is an inflammatory disease like Lupus which does have a known connection to IIH. I do think AS is my connection to IIH. As a matter of fact I am now positive it is.

By all means, if any of you think you may have a connection with IIH do look at the website I posted and see if you have any symptoms that match. A lumbar puncture is the only way to get a definitive diagnosis and they are not much fun, especially to a patient with AS. I have had to have 2 of them before I knew that I had AS and they both ended up with horrible low pressure leaks requiring emergency blood patches (most painful time of my life). I have been advised to NEVER get them again and to only rely on MRI for my IIH monitoring (I have an empty sella/flat pituitary, if pressure was normal my pituitary would not be flat causing an empty sella).
Do get checked out by an eye doctor immediately. This condition is very serious, if you think you may have this condition..

I would be interested in following your stories, please keep me informed....

Best of luck!
Stacey

Re: Headaches another cause..IIH
svogrinec #175793 05/29/10 01:27 AM
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Saw the nuero-opthalmologist on Thurs. He freaked out when I described how my headache and eye pain stopped after I had a bunch of clear fluid running out of my left nostril for a couple days! It eventually stopped. He immediately sent me for MRI and sent me to ENT stat. I seem to have had a rupture of the spinal fluid into my sinuses. Caused by too much pressure. ENT examined and said it must have healed up and closed off for the time being, but it would do it again if something wasn't done. (Thank the Lord I didn't get a brain infection while it was open!) I now have an appointment with nuerologist next week to have spinal tap to check pressure. If too high, I will probably be getting a shunt. Well, that's it for now. Just thought I'd update.

Blessings,
Nisey


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Re: Headaches another cause..IIH
nisey #175795 05/29/10 02:09 AM
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oh my God nisey!!! i am so very sorry, you have all my prayers sister. do you know not a month ago i saw this very thing on the mystery diagnosis on tv?!!! i cannot recall what the fix is. but it didn't seem too bad,certainly not as dangerous as having the leak. honestly my friend, you have been so suffering. the prayers will keep coming until this is resolved. please have someone update us if you aren't able to!!!

love, sequoia

Re: Headaches another cause..IIH
#175797 05/29/10 02:15 AM
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OMG is right, that sounds so nasty, I hope the shunt and everything works out for you

Re: Headaches another cause..IIH
winelover #177240 06/16/10 12:38 AM
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I have also been diagnosed with AS and IIH.I will undergo shunt surgery on 7/2/10.

Re: Headaches another cause..IIH
wyndys #177243 06/16/10 01:09 AM
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After reading up on this from when it was originally posted - I wondered if I might have it as well. (particularly since I have the pulsatile tinnitus and have since I was young). I had sort of hoped for an LP to rule it out (or confirm). But then the neuro said no to the LP and also said that some people are "just more sensitive to their heartbeat" (hearing it). Ugh. Answers! Why can't they be easy??


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