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 Recently diagnosed with IIH

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PostSubject: Recently diagnosed with IIH   Mon Nov 28, 2016 5:34 am

Hey all.

Thank goodness for this site! I was so ill informed and now not so alone feeling anymore. I feel like I don't need to tell you that I've been through hell and back with this. I'm posting for 1. To share my experience thus far for anyone else new and 2. To maybe help me prepare for my first dr visit.
Last week I had a severe neck and shoulder pain (which usually has occurred in the past due to my line of work 'eyelash extension technician') but THIS TIME it got worse every day. It Started Wednesday evening. So I went for a massage. Had some relief until I started driving home. A whooshing in the ear (with pain still in the neck and shoulders). Followed by dizziness and good old vomiting. Then the dreadful pressure in my head oh my!! I was miserable. Besides everything I couldn't lay down. I was in too much pain and discomfort. I couldn't keep meds down (vomiting) so I ended up rocking back in forth until about 3:00 am and decided on the ER (I'm in the US).
They decided I had "a headache" and sent me off with pain meds. Ugh! Pain meds nocked me out for two hours. Up again. Same thing. Now I'm starving. Sleep deprived on top of everything. Turning yellow from the whole thing. Back I go to the ER BEGGING them to do something. MRI cat scan. The whole nine. They found NOTHING. Same thing more pain meds. "Go see your GP It's a "headache"". Ugh! Now we are at fri or sat and I havnt slept. I've Barley eaten and pain with pressure has stayed solid. A pissed off dad said "this can't be nothing!" Third time at the ER. I can't even speak at this point. The drs and nurses looked and acted so fed up and annoyed with me for being there AGAIN. They gave me a number to a neuro and sent me off with nothing but a couple IV fluids from vomiting.

Sunday pain subsides. Monday I saw the neuro. Neuro didn't even touch me. "I don't know why you're here...I've checked all of your paperwork and scans. It sounds like you're just having bad migraines ". She sent me off with paperwork on how to deal with migraines! Lmao I can't help but laugh in hysteria and this point.
I on my own decided to see an eye dr at some random eye care place since I was having vision problems in so many ways. It cost me $65 for this nice man who worriedly informed me that I have a possible IIH and something else starting with a P. And said to call a opthomologist.

After all that. I can't even believe it. I've been ok since (besides the whooshing and pain behind my eyelids). I call tomorrow morning to set up and appt with someone and I'm so so scared. Those needles freak me out! I've taken advice from every topic but hoping for more direction to help show my dr that I'm not going to be pushed around and I want it done right! Yes I'm over weight..I'm prepared for them to say it so that no one gets punched lol. Anything will help. Thanks for reading my novel!

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PostSubject: Re: Recently diagnosed with IIH   Tue Nov 29, 2016 4:12 pm

Hi Jess, and welcome to the forum! Unfortunately, your experience is not unusual. It does seem like they at least have you on the right track for diagnosis and treatment now, but sorry you had to suffer and experience such poor service. We are definitely our own best advocates, and looks like you've got a handle on that part!

I'm sure the optician was talking about papilledema, which is a swelling of your optic nerve from increase fluid (pressure). That's why your vision has been affected and a possible symptom of IIH, but not necessary for diagnosis. Unfortunately, it can take some time to confirm diagnosis and receive appropriate treatment, so hang in there! If ophthalmologist confirms, you'll probably be scheduled for a spinal tap (LP)..that's how they measure your cerebral spinal fluid (pressure) levels. Then, to neurologist or neurosurgeon for treatment. There are medications such as Diamox, Topamax, and Lasix that can be used to reduce fluid levels. It honestly depends on what you're able to tolerate and how it affects your symptoms. Some members are able to manage with medications, others need more invasive solutions like optic nerve sheathing, stents, and shunts. Some people have just one episode of IIH and are fine once treated, others have recurring issues. Everyone is different, which makes diagnosis and treatment that much more difficult. Feel free to check out the site and ask us anything. We'll do our best to support and guide you through the process.

Losing weight has been known to help some members, but it's not universal. We always recommend members try to be as healthy as possible, but understand that symptoms can sometimes make that impossible. Many people find that some foods, for me anything processed, makes symptoms worse. You may want to start a symptom log..track symptoms, food, sleep, etc. Here's a sample from our Useful Booklets and Guides link in Living with IIH section. http://www.ihaveiih.com/t59-i-have-iih-symptom-log. There are also guides for talking with family, friends, specialists in that section that you may find helpful.

Some members find a little relief with ice pack to back of neck or across forehead/eyes, others do better with heat. I personally find a "sweet spot" laying on my side at 45-60 degree angle, propped up with pillows. It's mostly trial and error, but whatever helps! You may also find that straining, bending, or any exertion makes symptoms worse, so just be mindful.

This seems like a bunch of random information, but I hope it was helpful. Let us know if you have any further questions and keep us posted on your progress.

Take care,
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PostSubject: Re: Recently diagnosed with IIH   Wed Nov 30, 2016 3:55 am

how incredibly sad that after seeing THREE ER docs and one NEUROLOGIST, that it takes a NON MD to actually examine the patient properly and detect the papilledema.  honestly I think you could sue all four of those docs for negligence and pain and suffering.  I am a doctor and one of the most important parts of the neurological exam when a person presents with a headache is the ophthalmoscopy.  how could they all have missed your papilledema?  did they even look in your eyes?  don't go back to that neurologist, that is just so unprofessional that he missed it.  I took my son to a new neurologist yesterday (we both have IIH) and I was surprised that he didn't do much of a physical exam, but the one thing he DID do is look in his eyes.
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Recently diagnosed with IIH

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