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 New to IIH and a male sufferer

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Vernor
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PostSubject: New to IIH and a male sufferer   Thu Feb 21, 2013 4:32 pm

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I have been suffering with pulsatile tinnitus for 3 years. I have been trying to find an underlying cause but had been unsuccessful. I saw ENTs a Neurootologist, tried intrtympanic steroid injections, had MRIs, MRIs, a temporal CT scan with no diagnosis and no improvement of symptoms. I had multiple possible diagnosis of cochlear hydrops (mennieres), auditory nerve compression etc.. A neurologist's PA suggested that the problems I was experiencing were made worse by depression and emotional factors. Well duh - experience life with your heart beating in your ear 24 hrs per day 7 days per week - experience daily headaches etc and it certainly will have an a psychological and emotional impact. The ignorance was maddening.

I previously suggested IIH but all of the physicians I had seen insisted that it could not be IIH because I was not a pregnant or overweight female. They also insisted that I did not exhibit all of the symptoms. I finally got someone to listen to me and a lumbar puncture was ordered. The opening pressures were not abnormally high but were higher than normal. After the lumbar puncture the tinnitus went away for a short period of time - which is consistent with the literature. The only other symptoms that I experience is the headaches, some light headedess and some issues with my vision.

The cruel irony is that I am an Audiologist - testing for hearing loss, vestibular evaluations, hearing aids and ALDs. I teach at a University so I am fairly familiar with disorders of the ear. I have done ALOT of research in causes of pulsatile tinnitus and eliminating the common causes based on the test results. I had to be the one that suggested possible causes. If left to the doctors - I would still be struggling to find out the cause. IIH stood out as a possible cause of my symtpoms.

I am not happy with the diagnosis but it is somewhat of a relief to at least know. I am starting a course of Diamox and of course trying to drop a few pounds - watching salt intact - trying to limit stress (good luck on this one). I am also trying some holistic things like meditation and relaxation techniques. I am not sure people are aware of IIH and find it hard to explain it to my employer. I look fine on the outside but some days it is hard to function at 100%.

I am not a candidate at this time for a shunt - so the med route is the current approach that I am following. I encourage those that are still looking for a cause for their symptoms to keep looking. It would also be nice to hear from other males with similar diagnosis.

Glad to join this discussion group.

Vernor

Happy to join the group and hope to get clue about this disorder. Lets pray for a cure.

Vernor
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MarkyMark
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PostSubject: Re: New to IIH and a male sufferer   Thu Feb 21, 2013 9:03 pm

Hi, Vernor,

Welcome to the forum! I can empathize with the fact that the medical community does not want to believe that you have IIH because you do not fit the profile. Too bad we couldn't beat the lottery with these odds, right? ;) Seriously, though, the only real measure of IIH is that the pressure is too high for YOU. I have talked to some people who had very few symptoms with an OP over 35, yet some have terrible issues with an OP in the low 20s. The fact that the tinnitus went away with the LP makes me think that your pressure was too high.

I am curious about the visual issues, as that is my dominant symptom, along with the associated eye pain and difficulty moving my eyes/diplopia. What do your headaches feel like? Where do they start, and where are they focused?

Have you found any triggers for symptoms or anything that works or definitely doesnt work for you?

Once again, I am glad you found this forum. I'm sorry you have IIH, but happy that you are here!

Feel free to ask questions or just vent.

Mark
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Wylee
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PostSubject: Re: New to IIH and a male sufferer   Thu Feb 21, 2013 11:03 pm

Hi Vernor, so glad that you made the trip. We love our site over at adjunction, but the traffic is still very limited over there. While we work with Babby to help bring those stats higher, this site is usually very busy, and, as you have seen, we have active male members as well.

I hope that you will keep actively trying to get the medical community to work with you, to think outside of the box, so that just maybe you guys can get some much needed attention too. When I first got sick in 2008 with what turned out to be Ramsay Hunt Syndrome (Shingles of the ear), the three ER's I went to all said the same thing..... Bell's Palsy and Cellulitus. They were unable to connect the dots and see Shingles in the ear plus facial paralysis equals RHS. So I did not get the antivirals that could have stopped the virus from attacking my head. I often wonder if "long term" elevated ICP has the same type of cumulative effect.

I just know you will find all kinds of useful info here.

Welcome aboard ;)
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medmisfit
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PostSubject: Re: New to IIH and a male sufferer   Fri Feb 22, 2013 3:49 pm

Hi Vernor, and welcome to the group! I've had IIH for almost 15 years, am an overweight woman of childbearing years, and still can't get doctors to listen or understand..I can only imagine what men w/ IIH endure! IIH is different for everyone, but the core issues are the same..no matter your gender, size, or age.

I would encourage you to check out the site..especially Useful Guides and Print Outs section. A lot of our members have also found a symptom log very helpful.. especially when starting new meds. It will help you track symptoms for the doctors and hopefully identify some patterns or triggers. You can find examples in this section. Feel free to post anywhere or PM any of the Moderators or Admin w/ questions or concerns. We'll do our best to help you through this difficult time!

Take care,
Julie
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Wylee
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PostSubject: Re: New to IIH and a male sufferer   Wed Mar 06, 2013 12:56 am

Vernor, how's things going? Are you feeling any better?
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Vernor
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PostSubject: Re: New to IIH and a male sufferer   Thu Apr 04, 2013 6:40 pm

Sorry I have not been very active with the group. The last few months have been up and down. Lots of stress at work and home. I am the primary caregiver for my elderly mother which adds to the stress. My vision has been going back and forth - some days it is spot on others I have difficulty focusing especially the computer - is this typical?

I started the round of Diamox and then the Dr told me to stop until they do a carotid angiogram. Didn't make the appointment because of the weather which is now rescheduled for May.

As others I just want a diagnosis of something - not that I want anything but at least I can put a name on it and deal with it.

I am trying to lose about 20 lbs and am watching my salt intake - attempting to kick the caffeine habit. I read some interesting articles linking sleep apnea and IIH so a sleep study is in my future.

Like alot of people I just try and wake up everyday and deal - not always easy. I am ashamed to say some days require some assistance (diltiazem) but I try and be very careful not to make it a habit - literally and figuratively.

I keep trolling the internet for any new information. I would like to find a Dr that has some experience with
this disorder. I do appreciate the guy I am currently seeing but it seems like we are just eliminating possibilities.

Well I am off to teach - thank you for the inquiry and support. ;)
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MarkyMark
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PostSubject: Re: New to IIH and a male sufferer   Thu Apr 04, 2013 7:35 pm

Hi, Vernor,

If you don't mind me asking, what was you opening pressure on your LP? I'm just curious, as you know that ICP can range up and down during the day. I was just curious if your pressure was in the low to mid 20s.

Anyway, the vision changes are typical for me. I have a lot of them though, along with the stiff, hard-to-move eyes and soreness. But focusing can really be a problem sometimes. Usually, I will take breaks and just rest my eyes. Also, I recommend getting a flaxseed eye compress off of Amazon; it will make your eyes feel better.

Let us know the results of the angiogram. It sounds like you are doing the right things in terms of losing weight, lowering salt intake, and kicking caffeine. I might also suggest lowering your sugar intake and cutting out alcohol and see if you get some relief.

Is your problem mostly due to headaches or eye pain, or is it fatigue that causes you the most problems? I got to where I would hit a wall during the day. That has gotten a lot better recently.

I hope you get some relief soon! Let us know how things are going and if you need anything.

Mark
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medmisfit
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PostSubject: Re: New to IIH and a male sufferer   Fri Apr 05, 2013 6:42 pm

I'm not sure where you live, but there are aging programs that may be able to assist with your mother's care. Eldercare Locator (800-677-1116) is a nationwide service that may be able to provide you with contact info for services in your area. Most areas have meals, transportation, emergency response systems and some form of home health services. There are also disease specific foundations that may provide support to you and your mother. It's not much, but may be something to think about. Even the National Caregivers Grant may be able to assist on short term basis if you find yourself to sick or overwhelmed to care for her.

Take care of yourself and let us know if we can help.
Julie
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DMajorly
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PostSubject: Re: New to IIH and a male sufferer   Sat Apr 06, 2013 4:31 am

Vernor,
you describe it so well in your first post about listining to your heartbeat in your ear 24/7.... its horrible in its self, along with the pain its exausting! That is the only way i can put it. A lot of people ( in my case), including co workers and managers havent taken a second to research my illness to know what I/ we are going through. Its horrible to feel like you are trying so hard to be normal and the stress of people not understanding makes it hurt deeper in a different way... i guess I just feel like if the shoe was on the other foot, I would want to know about what someone was feeling before making any comments.
People on this forum really do feel your pain. Just reading your story makes me feel so much less alone. I too had to seek help for pain but also for anxiety. I have also been looking into meditation. has that helped you? there is a temple near my house so I am going on Monday. Smile
we all need help at times, im so glad we can come here and know we are not alone! I hope all is well with you!
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Vernor
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PostSubject: Re: New to IIH and a male sufferer   Sat May 25, 2013 3:17 am

Again it has been to long for me to post a reply. I started a response to MarkyMark - saved it to finish later and cannot find it.

My opening pressures were high 20s. The referring physician decided that based on the pressures that I did not have IIH so at that point that was it. I was still looking for a cause of all my symptoms. Approximately a week later my neurologist who had made my referral to the other neurologist (I know "who's on first etc") called me to say that he had a discussion with the other neurologist who had referred me for the LP. The possibility of IIH was again discussed.

I personally question the reliability of the test results of the LP as I experienced severe headaches. I had to undergo several blood patches to seal the hole created by the LP. The Drs that performed the blood patches both commented on the needle size the radiologist used. The LP was done at a small backwater hospital (I had no choice) so again I am unsure if the results were accurate.

I have been referred for a cerebral angiogram to rule out - well I am not sure what they are looking for - but to rule out something. I was unable to have the angiogram done because a bad snowstorm prevented me from traveling the 21/2 hrs to the hospital. I am now scheduled for June 4th.

April was a lousy month - headaches - bad tinnitus - lots of stress. I had a few good days but overall it was a bad month. Now that the students are gone for the semester hopefully the stress will lessen. I also ended up in the ER on an unrelated problem.

I think I mentioned in a previous post that I had started a round of acetazolamide - the Dr discontinued the med until a firm diagnosis was made. I was not on it long enough to experience anything other than a metallic taste while drinking carbonated beverages. Assuming the angiogram shows nothing and a diagnosis of IIH is made - what can I expect with regards to side effects of the medication.

I also would like to know if anyone has experienced a hearing loss as a result. I have experienced an asymmetrical hearing loss in the right ear. Since hearing testing is in my scope of practice I am a loss to explain it. I have not read anywhere that hearing loss is part of IIH but I may be wrong.

Well sorry to ramble on - hope all others are doing well. I try to keep the faith :roll: Any comments are appreciated.
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Vernor
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PostSubject: Re: New to IIH and a male sufferer   Sat May 25, 2013 3:27 am

To DMajorly

Yes I think the tinnitus is the worst part of this disorder at this point. It gets very bad at times. Keeps me awake
and generally makes life miserable. The tinnitus was the first symptom I experienced and as time has passed I have experienced all of the other symptoms. As I have posted previously - the most frustrating part is the IGNORANCE of the medical community. I have been passed over by many physicians - I had to initiate on my own and travel 2 1/2 hrs from my home to get a physician to listen to me. I feel for those that cannot find anyone to listen to them :cry: . I pray for the day my tinnitus goes away.
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MarkyMark
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PostSubject: Re: New to IIH and a male sufferer   Sat May 25, 2013 5:20 pm

I have the bad tinnitus but apparently not as bad as yours. Mine doesnt keep me awake. Unfortunatel i have heard of hearing loss associated with iih. My ears feel full all the time but so far my hearing tests have been ok. I do get waves of intense pressure and pain in my ears at times. Unfortunately most doctors are not knwledgeable about iih. My gp still puts down my diagnosis as normal pressure hydrocephalus lol yet still mentions ptc in the same conversation. Sigh.
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Wylee
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PostSubject: Re: New to IIH and a male sufferer   Sat May 25, 2013 8:00 pm

Vernor, I hate the idea that your second neuro is stuck thinking inside the box. Those numbers are NOT set in stone. You need someone who is willing to think outside of the box. Someone who "gets it"! Any chance of changing to a third neuro??
What the intracranial pressures can do is force the cranial nerves to move out of their "normal" position. A neuro-ophthalmologist that I spoke with a few years ago at the ihrf conference said that sometimes the nerves can touch each other and cause a short circuit. They found that if you surgically separate and insulate the nerves, they go back to acting normally. That includes those of us who have facial paralysis, tinnitus, hearing loss, dizziness and vision issues. The really only definitive test for IH, is after fluid is drawn off during a lp and your symptoms improve, you have IH. If your symptoms improve after having fluid added, you have low pressure.

Is there somewhere that you can go that would be able to get you a better lp? If your docs are so dead set about using those numbers, the least they can do is make sure they are using good data!
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Vernor
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PostSubject: Re: New to IIH and a male sufferer   Mon May 27, 2013 1:08 am

Fortunately the 2nd neuro that was actually the one with the open mind. He referred me to the 3rd neuro that closed his mind to IIH. The 2nd neuro actually initiated the conversation with the 3rd neuro who conceded and ordered the cerebral angiogram. I think the 2nd neuro really cares and is willing to explore all of the options. Thank you for letting me know what the angiogram is looking for.

I know there is something wrong. I spent most of the day in bed. This is NOT me.

I did have an ophthalmology exam. Nothing has shown up but my vision changes from day to day - probably the most scary part.

THANK YOU all for the support. On one of my worst days last week one of my coworkers said how good I look - they just don't understand.
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Heidi
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PostSubject: Re: New to IIH and a male sufferer   Tue May 28, 2013 9:25 pm

Vernor I totally sympathise, it seems most people seem to think that when you're ill you should look gaunt, pale and frail, when we know that this is often not the case. I think the saying "never judge a book by it's cover" is appropriate here.
Fingers crossed that your 2nd Neuro will succeed where the other has failed.
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Wylee
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PostSubject: Re: New to IIH and a male sufferer   Wed May 29, 2013 12:20 am

Hey Vernor, hope you don't live near Whiteface Mountain. With the snowstorm they just had, this close to June, well, I would hate to think you would have weather issues again that would prevent getting that next test done. I am hoping that the test might show a restricted artery?? That could explain the fluctuating vision, which, I am having too. My eye doc had no explanation, just to keep watch and see if it gets worse. There are days my eyeglasses are a must in order to read. Other days, like today, I have to take the glasses off, and voila', I can see perfectly.

Please let me know what you find out. Maybe we can help each other on this one ;)
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