Let's Talk... if you can?

For me, one of the most frustrating things about IIH is the way that it affects my ability to socialize. I can't say I was ever a social butterfly before I had IIH but I did enjoy time with friends and small talk with acquaintances. Now I often feel as though I don't make any sense when I'm talking to people.

 I can hold my own just fine online or in text messages. There I have the ability to think before I answer and even edit myself before I post. But, if you put me in front of people and expect me to participate in a real life conversation you're asking for trouble. Of course, this varies based on how much pressure is in my head at any given moment. But I struggle with conversation even on the most average day.

First of all, the pressure seems to cause a general brain sluggishness. It can take awhile for me to process things, especially the spoken word. I'm like the person who laughs last at every joke. It's not because I don't get the joke it's because it can take my brain so much longer to process and understand even basic language.

Here's an example: Parlor City is a an ice cream parlor near our house that also offers burgers and tenderloins. Sometimes we eat there when other plans fall through because it's close and cheap. One day my husband said "Hey, do you think we could get lunch at Parlor City?" My brain went completely blank. I had no idea what he was talking about. I stared at him for some time before he said "if you don't want to go you can just say no." I shook my head and answered "I didn't say no I just don't have any idea what Parlor City is." He had to explain it to me before it clicked. Ohhh... the place on the corner with the ice cream and burger. Oh yeah.

I also have trouble speaking. I have started stuttering, I trip over words and even use the wrong words. If I had spoken that last sentence it probably would have sounded more like,

"I have... started straightening, I t-t-t-trip over words and even use the wrong words."

On Mother's Day I was having a conversation with some of my family. What we were talking about doesn't matter. I was trying to share my opinion and I wanted to use the word "sympathy" but I said "symphony" instead. I hurried to correct myself and loudly said "sympany!" I paused. Is that even a word? After that I was confused and couldn't remember what I was trying to say. My mom looked at me and gave me an encouraging nod before she said "sympathy". I was embarrassed but the conversation continued as if nothing had happened. I think my dad agreed with what I was saying but I'm not sure. I didn't try to speak anymore after that, it was just too hard to follow the conversation.

I fear I am developing a social anxiety because I fear messing up so much. I appreciate the friends who don't care if I say "cameo" instead of "candid" or wait patiently while I stammer over the word tantrum. Unfortunately, this is just the way I am now. I hope it isn't forever.

My Story: Finally Some Answers!

Missed a step? Catch up here!
Part One: The Beginning
Part Two: It Gets Complicated
Part Three: Turning Point

At my doctor's urging, my husband and I rushed off to an ophthalmologist after I experienced temporary blindness. I was a nervous wreck as we dropped the kids off with my mom and headed to the appointment.

Fortunately, I didn't have to wait long for some information. The doctor dilated my eyes and used his lens and light to look into the back of my eyes. He pulled away and explained that my optic nerves were swollen, a condition called papilledema. 

Papilledema can be caused by a few various conditions, some serious and some not so serious. The doctor said that since papilledema could indicate a medical emergency he needed to take pictures of the backs of my eyes and then I would need to head to the hospital to have an MRI done that night.

The pictures were easy enough if you don't mind blinding lights and holding your eyes open for long stretches of time. My mind was whirling at this point with thoughts of brain tumors and other unknown problems.

I was terrified of the MRI but it ended up being a pretty easy test, I actually slept through part of it! We waited for awhile afterward hoping to hear some results. But, in the end we were sent home without any answers. I was to return to the ophthalmologist the next morning to hear my results from him.

To say it was a long night would be an understatement. There was plenty of worry and not enough sleep but I also felt a bit of relief knowing how close I finally was to some real answers. Good or bad, a diagnosis would only bring a sense of relief after so many months of unexplained misery.

The doctor's first words to me that day were "Good morning. Your MRI showed no signs of a tumor". What a relief! It was then that I first heard the names Idiopathic Intracranial Hypertension and Pseudotumor. With sever optic nerve swelling and a clear MRI, it was almost certain that my problem was Intracranial Hypertension. 

From there I was referred to a Neuro-Ophthalmologist at University of Iowa Hospital in Iowa City. That appointment wouldn't come for another 2 weeks but until then I had an answer and some hope for healing in my future.

My Story: Turning Point

Missed a step? Catch up here!
Part One: The Beginning
Part Two: It Gets Complicated

My confusing symptoms continued in 2015: headaches, joint pain, blurry vision and hives and I added new ones to the list: flashing lights when I closed my eyes, neck pain, swollen fingers, facial swelling and a whooshing sound in my head that came and went.

As more and more trouble stacked on top of each other without any explanation I seriously began to worry about what might happen to me.

In January I saw Amy again for the last time.  She suggested that my symptoms may be "psychosomatic" meaning all in my head. She wondered if the whooshing sound and pressure feeling that came before headaches was actually anxiety. I do have a history of anxiety and panic attacks but told her this was completely different. I felt like she was tired of hearing from me and ready to wash her hands of me.

She referred me to an allergist and a rheumatologist. The hives and facial swelling combined alarmed her enough to think that maybe I'd developed an allergy to something in my house. And although my blood work hadn't shown an sign of auto-immune disorder but she thought that a rheumatologist would be able to rule those problems out more effectively.

The allergist tested me for countless allergies from pet dander to grass and everything in between but came up empty handed. She did explain to me that hives are an immune system response and sometimes they appear when the body is fighting an infection or otherwise stressed. So, I was diagnosed with idiopathic urticaria and facial edema (hives and facial swelling of unknown cause).

I never made it to the rheumatologist. My son woke up screaming in the early morning hours of February 6th. I rushed out of bed but was shocked and frightened to realize that I couldn't see anything. It was like a gray curtain had been pulled in front of my face. My vision cleared after a few seconds and I went to my son's room to settle him (he had fallen out of bed). I went back to bed hoping that my temporary blindness had been some sort of fluke.

Unfortunately, when I woke up in the morning and stood up I was temporarily blinded again. I got my kids up and fed them breakfast while trying to decide what to do. My vision was more blurry than it had ever been before and I went completely blind every time I bent over or stood from sitting.

Finally I put a call into my GP to ask him what I should do. I did not want to see Amy again but I was hoping my old doctor would have an action plan for me. After leaving a message for him I called my husband and asked him to come home from work.

The nurse from my doctor's office called back before my husband made it home. My doctor wanted me to get in to an ophthalmologist (an MD who specializes in eye care) as soon as possible. He sent in a referral and I was scheduled to see the eye doctor the same day.

Next - My Story: Finally some answers!

My Story: It Gets Complicated

This is Part 2 of my IIH story. Read the previous chapter - My Story: The Beginning

Things started to get more strange for me in November. First of all, I started to notice small hives on my arms and legs. I say hives but at the time I didn't know what they were. They didn't itch and they each only lasted about 12 hours. In addition, I was in and out of the doctor's office for various illnesses from ear infections to GI troubles.

My GP was cutting back on hours and often wasn't available so I mostly met with his physician's assistant instead. We'll call her Amy for ease of use. Amy was nice but I found it difficult to talk to her about my troubles. I felt like she brushed a lot of my complaints off. Every time I went in I told her I was still having headaches, joint pain and I showed her my rashes but she focused solely on the main complaint that had brought me into the office.

I don't remember how many times I was in the doctor's office between the beginning of November and the middle of December. It was a lot. I felt like I was falling a part and so I kept pushing for answers. My hives were steadily getting worse, they were itchy and much more noticeable. I was also experiencing blurry vision that came and went in addition to the headaches and joint pain. Eventually, Amy decided to do some basic blood work. Everything came back clear except for my CRP which was extremely high. High CRP can indicate an infection or inflammation.

3 days before Christmas Amy prescribed an extra strength antibiotic to hopefully take care of my GI issues. On Christmas morning I woke up with hugely swollen lips. Assuming it was a reaction to the antibiotic, I skipped my morning dose and called the on call doctor after my kids were done opening gifts. I was told to stop taking the medicine and to call 911 if I started having trouble breathing. Merry Christmas!

The good news was that my stomach troubles did improve after only 3 days on the antibiotic. I now know that those troubles weren't caused by the larger issue (IIH), it was just a nasty bacteria that got involved and confused things. Unfortunately, I would also later find out the facial swelling wasn't caused by the antibiotic. I still deal with facial swelling that is kept at bay with medicine.

I ended 2014 more confused than ever regarding my health. The stomach problems were gone but I still had head aches, joint pain, unexplained rashes, facial swelling, blurry vision and fatigue. Things would only get worse in the new year.

Next - My Story:Turning Point

My Story: The Beginning

August 2014 - December 2015

I went to my General Practitioner to talk to him about some problems I'd been having. My main complaints were headaches, fatigue and joint pain. He ran some blood tests to check for diabetes and thyroid problems. When the blood tests came back clear he suggested that my problems were caused  by being overweight. Since I was overweight I figured he must be right and resolved to lose weight.

My doctor wet me up with a nurse who specializes in helping people lose weight. The problem was, she mainly works with patients with diabetes and she treated me in a similar way. Carb counting was too  much for me and as I have done with other diets, I eventually fell off the wagon. And so summer turned to fall and my troubles persisted. Since I knew the problems were my own fault I did my best to ignore them as I continued to try to lose weight.

I didn't know it then but the headaches and joint pain I was experiencing were very early symptoms of the pressure that was building in my skull. It wasn't at a critical level then and couldn't have been diagnosed but it was the start of my journey with Idiopathic Intracranial Hypertension.

Read On - Part Two: It Gets Complicated

Bringing Awareness and hope!

I started this blog as a way to bring awareness to a rare disease with two different long, hard to pronounce names: Idiopathic Intracranial Hypertension (say that 3 times fast). It's also known as Pseudo Tumor Cerebri although doctors are wanting to retire this moniker. Me? I just call it my fake tumor. More on that later.

In order to educate about this disease I'm going to be sharing my own journey with IIH/PTC as well as the few research studies I can find. I also hope to have some guest posts from other people who have the condition. My own story will be told in a series of several posts and will continue indefinitely since I still deal with this condition on a daily basis.

My reasons for bringing awareness to IIH are two-fold:

Although IIH/PTC is rare, affecting only 1 in every 100,000 I hope that someday I will meet someone who recognizes the name when I mention it instead of looking at me like I'm speaking a foreign language. I want people to understand what it is and what it means when someone they love is diagnosed with Idiopathic Intracranial Hypertension.

IIH is currently incurable. There are treatments available to reduce symptoms but there is no cure. I hope that continued awareness will help bring more funding for research on this life changing condition.

Want to help? Click ---> IIH Awareness

First blog posts are awkward, aren't they? :) Anyway, thanks for reading. I'll be starting with my story soon!