On Friday, I wrapped up (I hope) a series of daily appointments at the University of Minnesota with a visit to an ophthalmologist.
Something happened while I was waiting to be seen. Actually, something was brewing the week before, but I wanted to deny it was happening, or would get worse. I think it has reappeared after more than five years because this is the first time since July 2011 that I have not had any successful shunt surgeries for 8+ months, and my brain/brain stem are getting seriously stressed.
Normally my symptoms resolve and I can open my eyes all the way when I’m laying flat. That’s the result of cerebrospinal fluid moving away from wherever it’s pooling and pressing on the brain stem and the nerve roots leading to my face. However, the tremors do not resolve with laying down. I remember being in an MRI machine in August of 2010 and the techs yelling at me to hold still because they couldn’t get clear pictures of my neck. I had absolutely no control over the tremors. This time around, for about a week I could feel the tremors in my neck when I laid down to sleep at night. I hoped it was the worst they would get.
Unfortunately, I have not been spared. The tremors are exhausting. And it’s bad enough that the world is already swimming around me – but the tremors really scramble my brain. They make my head constantly nod “yes.” I asked the resident doctor examining me for the ophthalmology test to document the tremors, since they started when I was sitting in a waiting area close to the examining room where I would be seen.
The reason why I insisted on seeing the ophthalmologist is that I wanted to have my vision problems documented – and not how they wished I could see, but what I could actually see. It’s going to take 12-15 months for me to get a hearing with a judge for a disability determination; I want to load the judge up with proof.
A tech took me through a ptosis vision field test. In the great scheme of things, it was pretty benign; no one had to stab me with needles or get me to take my clothes off. First they do the test without altering the eye to “see” what I can see. Then after that eye is done, the tech has to tape the eyelid so that at least 20% more of the lid is lifted. Have you seen the “tape game” by Jimmy Fallon? This is what it felt like. For extra special fun, my head was nodding so much that the tech had to grab my head and hold it in place for the test.
The Sick and the Dating 
I had some of those test done, I feel like the did the, she is like we want her to be thing. I hade been on medication for a bit, I haven’t had to have a shunt. Heck now the doctor’s don’t even talk about it, Im complicated. I fuctuate too much. It goes too high then I have blow outs and it goes too low. My body kind of regulates itself, but when it gets close to and when it blows out I get really sick.
But the doctors…they gave up trying. They think they get the meds right then I blow out anyway and I crash hard.
I’m sorry you have to go through this. I’ve never had the tremors from Intracranial Hypertension, but the headaches and vertgo….oh my golly. They are horrendous. I know I get those anyway, but a pressure headache is different. It feels like my brain is being squeezed or pressed against my skull, it is weird. The vertigo is really bad, violent. That happens with a blowout.
Glad I was able to come over today, thank you for coming by and checking on me even though I haven’t been buy in a long time.
Thoughts for the best.
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They’ve taken away my diagnosis of intracranial hypertension/pseudotumor cerebri, but you and I share some of the same symptoms. One shunt leaked for 10 months and I felt as if I were being beaten by a crow bar. The low pressure headaches feel that way because your brain is having the cushioning fluid taken away so that it does bump up against the cranium bones.
Being rare SUCKS.
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If they took that diagnosis away, what did they give you? Why the shunts?
They ignore that diagnosis of mine too, can’t even find it on my records, but that’s what the dr told me it was.
Why do I keep having this crap? Why the meds?
I was surprised to hear you aren’t on diability yet. I had to wait a long time for my hearing too, all because they didn’t understand the date. It was so stupid. I finally got in around 2 years after my initial file date. Then it was less than 2 months before I got approved and got back payment, that went back to 2 year before I filed, my date of disability was Nov 22, 2008. Why that was a big deal when they weren’t paying from then makes no sense to me. The hearing was pretty easy…and I was scared, big time.
Good luck on yours…yes bog them down with info.
Oh, ND when I have high pressure it is being sqeezed, sucks.
Yep being rare does suck.
Menieres is still considered rare because so many people are misdiagnosed. And it has so many different causes it could be different things. Sucks.
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Thank you for telling me about how your disability process went, because I think you are the closest person of reference that I have to my case.
The reason why I got shunts placed is because we initially thought it was IIH/pseudotumor, but at around surgery 4, we figured out it wasn’t. I know that I have to have CSF pulled off of my brain because my symptoms resolve when I actually have a working shunt – we figured that out because I had two taps four days apart, and my symptoms went away for 12 hours. Now I have IIH/pseutotumor, normal pressure hydrocephalus and communicating hydrocephalus as my “placeholder” diagnoses (basically for insurance purposes), but no real diagnosis – and I’m up to 46 doctors now.
I had a friend in Cincinnati who was diagnosed with Menieres, so I’m already familiar with it. That one is no joy ride, that’s for sure.
Thanks for all of your info and input, I truly appreciate it!
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