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 Newly diagnosed, unsure of what tests to ask for and questions to ask

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jenjones1901
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PostSubject: Newly diagnosed, unsure of what tests to ask for and questions to ask   Fri Jun 24, 2016 8:28 pm

The ophthalmologist discovered papilledema in March and I had an MRI at the end of April. Last week I was formally diagnosed after having a LP with a pressure of 35. The doctor performing the LP reduced the pressure to 14 during the procedure. During the reduction of fluid I got the most horrible pain in the front of my face, behind my nose, but it went away pretty quickly. The following day, the neurologist started me on Diamox 500mg 2x/day. The medicine made me so sick to my stomach, dizzy, tired, and actually made my headaches worse (but different if that makes sense – again it’s behind my nose like during the LP, forehead, and at the base of my skull). I took the Diamox for about a week, in which time my boss asked me if I was impaired at work, I lost over 10 pounds from not being able to eat, and basically slept whenever I wasn’t at work. I called the neuro’s office Monday morning and left a message in tears. They called back on Wednesday saying they wanted a CT to check for a brain bleed. I think all of this is related to the Diamox, so I declined the CT. I’m no doctor, but I would think if they suspected a brain bleed it would have been a little more emergent! After stopping Diamox cold turkey, it only took a day for my IIH symptoms to return, but I’ve been dealing with them for so long it seems easier to function with that than with the side effects of the medication.

The neuro office is horrible. It took 6 weeks to get in after my MRI and they didn’t schedule a follow-up from the LP for another 4 weeks. Plus getting anyone to call me back from there is a nightmare. I’ve gone to the Emergency Room but all they want to do is drug me up and I DON’T WANT DRUGS! Those pain drugs make me want to crawl out of my skin. I’d really like to be prepared with all the information I can next time I see the neurologist.

Has anyone else had similar issues with Diamox? I’ve read a lot about side effects but it doesn’t seem that most people get the killer headache that I get. What other questions should I ask, and what additional tests could I ask for? I’d really like to find out if there is a physical cause for this and if it can be fixed instead of just treating the symptoms with medication. Any advice would be much appreciated!
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medmisfit
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PostSubject: Re: Newly diagnosed, unsure of what tests to ask for and questions to ask   Fri Jun 24, 2016 10:16 pm

Unfortunately, your experience is fairly typical. They may have suggested CT to rule out other issues such as a brain bleed, but many members have had issues with Diamox. I tolerated it fairly well the first time, but couldn't take the side effects when my IIH came back.

We talk a little about medications and tests in the General Information section, but here's the link to diagnostic testing [You must be registered and logged in to see this link.]. There's also info regarding Diamox in General Discussions at [You must be registered and logged in to see this link.]. In the Living With IIH section there's also a guide on talking to your physician [You must be registered and logged in to see this link.]. There's actually a lot of good information on the site, if you feel up to perusing.

It can be very overwhelming and unfortunately not even the experts know a lot, so try to educate yourself and advocate the best you can. Maybe keep a symptom log to track any triggers or patterns. Some members are affected by foods, environment, times of day, etc. IIH affects everyone a little differently and as do the treatments, so it's a little trial and error.

You will find other medications and treatments listed in the General Discussions link above, so just know Diamox isn't your only option. The best advice I've every received was basically 'you know your body better than anyone, so keep looking until you find someone that listens'. It's not always easy depending on your location and insurance limitations, but at least get a second opinion if you're unhappy with the service.

Also, you may want to contact Human Resources at work and look into FMLA coverage until you get symptoms under control..[You must be registered and logged in to see this link.]. It basically gives you up to 12 weeks worth of leave over the course of a year and protects your job, if work in specific settings and meet criteria. If they're starting to question you, at least take a look at the PDF to see if it may be available to you.

Let us know if you have any questions or concerns once you've reviewed the information. And please look through the postings for possible suggestions on alleviating symptoms, etc.

I hope this helps!
Take care,
Julie
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jenjones1901
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PostSubject: Re: Newly diagnosed, unsure of what tests to ask for and questions to ask   Fri Jun 24, 2016 10:24 pm

Thank you Julie! I have been trying to read over the various topics and posts since becoming a member a few days ago. There is just soooo much out there, which is wonderful knowing that we're not alone in this but some of the stories are pretty scary too. It's all been very overwhelming, and I haven't gotten any information from my doctor yet. There are only 2 neurology practices in town, the one I wanted to get in with isn't accepting new patients and this was my second choice. Thanks again for your reply.
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medmisfit
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PostSubject: Re: Newly diagnosed, unsure of what tests to ask for and questions to ask   Mon Jun 27, 2016 3:34 pm

You're welcome, and I completely understand. The links I provided should take you right to the info you had requested. And remember, most people that post are looking for help because they're still suffering. There are many people with IIH that is controlled, so they have no need to post in these forums.

Unfortunately, I and many other members travel quite a distance for good care. My current trip is 3-3 1/2 hours one way for surgeon, but luckily my neuro-ophthalmologist is local. I would check in nearby cities, if you're not finding relief.
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