Sunday, January 30, 2011

Today's battle

What a battle today with dizziness. It seems as though I've found ways to make the headaches manageable--atleast for right now, but I wish I could say the same about the dizziness. This is becoming a daily battle and it's getting scary. I went to visit my sister for her birthday and wasn't able to drive because I was so dizzy last night and then I got better for probably about 14 hours or so, and another dizzy spell hit again.

As I was spending the night at my sister's house (my cousin drove my car and obviously also spent the night), they were asking me about my pseudotumor cerebri. I just thought I'd post the questions that they asked and some quick answers--atleast from my experience.

When you get dizzy is it just a quick 15 minute thing and then you're fine?
Not usually. Usually, it ends up in being dizzy for several hours at a time and the only way of relieving it is to sleep through it.

What causes you to get dizzy--is it the headaches?
I have absolutely no idea. That's one thing that I wish I knew the answer to because I feel like I'd be able to combat the dizziness a little bit better.

Do you know ahead of time when it's going to come on (headaches or dizziness)?
Most of the time no, but I have been able to pay close attention to my body and when I begin to feel even the slightest headache coming on, I immediately run to the medication to take because I don't want to end up with a migraine or an IH headache.

What is the difference between an IH headache and a migraine?
Well, up until a few months ago, I hadn't experienced either. All my life I had been lucky in the terms of only getting the occasional headache and nothing that OTC medicine couldn't get rid of right away. The migraines are nasty headaches and occur usually on one side of your head. In my case (but probably not everyone's), it often times feel as though I am being stabbed in the head or even just have a knife sticking out of my head. The IH headache is typically a pressure headache. The way that I described it to the neuros this past week was that I felt like a bucket was on my head squeezing my brain into nothing. The IH headaches can be all over the entire head or located behind the eyes.

Signing off for tonight--dizziness has been cured for the evening--hoping it doesn't return!

***If anyone ever has any questions regarding my experiences or about pseudotumor cerebri, please post them in the comment section and I'll try to answer them in my next post. The only way you will begin to understand what your loved one is going through is by asking and by no means will I be offended with questions!***

iHope for a cure!

Saturday, January 29, 2011

It's a new dawn, it's a new day......and I'm feeling......bad. :(

Have to say, I am a huge Michael Buble song, so I couldn't resist the title, but wish I could have finished it with feeling good! It's the nature of the beast!

I am still dealing with the cold, but am slowly starting to improve.

Since waking up this morning I am extremely dizzy. I have been walking in to things left and right. I was hesitant to shower as a result, but knew I probably would feel better after I did, so I forced myself to do something good. In the shower I was horribly dizzy and almost fell over in the shower several times. Luckily I was able to catch myself, but it's getting scary.

My lovely father!
My dad came up to visit me today to help out with a few things including shampooing my carpet since my cats messed on it on Tuesday when I was at the hospital and I haven't been able to get it up with my small carpet cleaner. I am completely out of food in my kitchen and as much as I hate cooking to begin with, I know that I need to cook to eat healthier and lose some weight. I haven't been able to go to the store, I can barely walk from the couch to the bathroom without losing my balance, so there is no way that I am safe to drive today. My dad ended up going to grab me a few necessities to hopefully get through the week and then is going to pick up lunch for us as well. 

I would love to write more and describe more of what I'm feeling and thinking, but I have a horrendous headache right now and my head is spinning even just sitting down typing. It's sad that it comes to this, but it has.

This times ten!

Friday, January 28, 2011

A huge honor....

I have been given a huge honor. This blog is now going to be posted on the IH Brain Pain blog as well as mine. Soon you will be able to view my posts at

I am very honored to have the ability to write about PTC/IIH and hopefully help others begin to understand what it is like to live with this neurological disorder.

I am at the beginning of this long journey and knowing that as of now there is no cure, this is going to be a long blog! I hope that you are all in for the long much as I'd like to think it will end, it won't, but this is going to be the story of what I have to deal with on a daily basis.

For the past few months, I have been depressed and scared. The more that I read on the internet the more that I fear that since I have this sulfa allergy and am unable to take medication to help the spinal fluid from producing so much....that I will need to have surgery. It's a very scary thought to have to have brain surgery and so I am trying to take a very proactive approach. I know that I have to speak up for myself when I am at the doctors appointments and with family and friends and even at work as well. If I don't speak up for myself and my needs, no one else will. No one else knows what I am feeling.

Right now I have a call in to my new neurologist asking about two different diuretics that I have been researching. *I have no medical background at all, so this is all research done on the internet.* I want to give that disclaimer so that no one thinks I know what I'm talking about. I'm merely asking about these two diuretics to see if it's possible for me to take one of them to help reduce the fluid--both of these I believe are non-sulfa based diuretics. I would much rather take and try a medication to see if it will work to help reduce the optic nerve swelling and reduce my CSF (spinal fluid) than have to go and get another spinal tap. Granted the doctor that performed the spinal tap on me was amazing. She was as soft as she could be and did complete it as quickly as she could knowing that it was painful for me and that I deal with anxiety (especially with needles!). However, I was crying during the procedure despite the numbing agent they used. It's not a fun situation, not that anyone expects it to be, but it also wasn't the worst pain I've ever been in. It's more uncomfortable than anything else. Another thing that I am trying to bring up to the neurologist that I forgot in my last appointment was the fact that I believe I may have sleep apnea. The last few months I have been losing a lot of sleep and rumor has it from my family that I snore just a bit (this is definitely me downplaying the situation). Over my winter break from teaching, my parents, sister, and I went on a vacation and shared a hotel room. My poor sister was sharing a bed with me and because I was snoring so loud due to the difficulty breathing.....she ended up sleeping on the bathroom floor in the hotel. I still feel bad about that, but it's a good thing she loves me. This was only a few weeks after my diagnosis and she knew how bad I was feeling and it's a great feeling to know that she cared about me and my sleep more than her own. She easily could have tried making me sleep in the bathroom on the floor. The poor thing, I still have to find a way of making it up to her.

Today was a somewhat rough day for me as far as my symptoms. The headaches were present, but not as bad as they could have been, however, from the minute I woke up until now I have been so dizzy. This morning I was actually walking into things and I feel as though I have completely lost all sense of balance. I will be in the middle of teaching and walking around the classroom and all of a sudden, I find myself completely losing my footing. At the age of 26....that's not normal. My students (8th grade) have been wonderful throughout all of this. I have been keeping them updated as to what is going on since I have been out sick a lot between the headaches and doctors visits, testing, etc. and it's been a huge blessing to have their support. One student even bought a get well card and had the entire class sign it for me. I just thought it was the sweetest thing and even teared up a little in front of them. I was completely touched.

Another thing I have noticed is that I have no memory at all anymore. I will do things that don't make any sense at all. This morning, I went into my refrigerator to get the milk for my cereal and guess what I found....the ice cream container from last night. There goes that ice cream! Luckily it didn't make a mess but man oh man do I want ice cream tonight and have none.

One thing that stinks about all of this is that I feel the need to talk about it, and with it being so rare, there aren't many people to talk about it with. I have been lucky enough to find support groups online and wonderful websites talking about PTC/IIH and how to deal with it, but there is no manual for this. And speaking to someone over the internet is not the same as having support from your family and friends. Don't get me wrong, I have the best family and friends possible. Each and every one of them loves me unconditionally and will do anything for me, and more and more I have been discovering that lately.

Right now I'm dealing with a horrible head cold which makes the headaches much worse than normal. I ran out of my pain medication yesterday and just felt the need to vent a little. I ended up posting a new "status" on facebook about how I felt too sick to go to the store to even get the medicine filled. My aunt who lives about two hours away saw it, called my aunt who lives ten minutes thing I know, she's calling me up telling me she is on the way to go pick it up. I felt horrible and would not let her help me out. I hate feeling helpless.

I wish I could add a video blog right now, but I am not technologically advanced enough to be able to figure that out. I think seeing someone talk about it out loud and their facial expressions really helps to describe what is or is not happening.

One of my biggest frustrations is the fact that I don't look sick. A chemo patient loses their hair. An IIH patient looks healthy but has the same symptoms as someone who has a brain tumor. Granted it's a much better diagnosis than cancer and I would never wish that upon anyone, but it's hard for someone to understand what they can't see and what is part of the unknown. You wouldn't believe how many doctors I've seen that don't know what PTC/IIH is or how to treat it. Or....if they have heard of it, it's just from their medical books. They've never seen a case of it and if you can't take the regular medication for it, they don't know what to do.

I guess I'll begin to wrap this up for tonight, but I want to leave it on a positive note, because that is the only way that I'm going to be able to cope with this. So.....

One good thing that happened today was that I had a decent day at work with my students and with my lesson. The lesson went well despite feeling dizzy and when I was too dizzy to stand up, the students stepped in and I almost think it was better that way--it was rewarding to see them be able to grow as students and take more responsibility for their own learning. It was really cool.

This picture was taken about three weeks after I was diagnosed with pseudotumor cerebri. This was taken on our vacation and I just have to share a picture of my lovely family that has been so helpful and loving.

Thursday, January 27, 2011

Intro continued

Picking back up where I left off...

I spent a half hour crying in my car and called my dad. I needed someone to talk to! He didn't have too much luck calming me down, but off I went to grab a quick bite to eat and then headed to Condell to go get that lovely MRI. I won't go into details on the MRI, it was rather uneventful--a typical MRI it was of the brain and orbits (eyes). And off I went. I had to wait a week to find out the results because that was the soonest I could get in with the neurologist.

I made my dad take the day off of work to come with me to the neurologist. Despite being 26 and an adult, it's a scary thing to go through and I needed that support, so he was more than willing to come with me and ask the questions that I couldn't get the courage to ask. The neurologist didn't spend a whole lot of time with me, took a look at the MRI results and after hearing my symptoms said he felt I had something called pseudotumor cerebri or idiopathic intracranial hypertension. However, in order to be officially diagnosed, I needed one more test to confirm his hypothesis....I needed a "lumbar puncture." And you know, I just figured it was some other easy test but that's the new word for a "spinal tap" and I swear they do that so they don't freak you out. But guess what....having a huge needle go into your back regardless of the name SUCKS. My opening pressure was 36 and it's supposed to be somewhere around 10-15 I believe. Now, after I have researched this through various websites 36 is high but is certainly not the highest ever been seen, but it's enough to cause extra pressure in your brain and be horribly painful.

So, I guess I'll take a few minutes to really explain what PTC/IIH is. Pseudotumor Cerebri directly translated is a fake brain tumor. No, I'm not crazy and think I have one, but my body is crazy and thinks it has one. I have the same symptoms as someone who has a brain tumor does, but there is no actual tumor present. There are MANY different symptoms that can be presented and no two people with PTC/IIH have the same exact symptoms which makes this a very difficult diagnosis. It's a very rare disease....about 1 in 100,000 people get this, primarily overweight women at a childbearing age. This describes me perfectly--overweight and 26. PTC/IIH if left untreated will cause blindness and vision loss, which is scary! What can I say? This sucks. But, after lots of crying and stress, I'm starting to process what I'm actually dealing with and learning lots about it through research on the internet. There are many great websites out there that describe what PTC/IIH is and information on many different treatments.

My case of PTC/IIH is different than most because I am allergic to sulfa. Thank you daddy. There are basically three steps of treatment....1-a diuretic to help reduce the excess spinal fluid that is pushing on my brain. 2-constant spinal taps to reduce the fluid. 3-some form of surgery to reduce the spinal fluid. Well, we tried step one....that was how I found out I was allergic to sulfa. It runs in my dad's family, so I knew there was the option for it to be there, but had never encountered a problem before. I was on this sulfa-based diuretic for two weeks and it really helped the headaches and dizziness that I had been experiencing, however, I quickly had horrible acne and rashes all over. Luckily it wasn't a more serious reaction, but it still sucked. I called my neurologist back at that point and he told me to stop taking it, but put me on prenisone (a steroid) to assist in reducing the optic nerve swelling. I realize that I'm kind of missing some points here, but I'm not a doctor and can't explain this the best, perhaps if something is confusing to you, you can go to one of the websites and read up about it more.

Most recently, I went to Rush University Medical Center on January 25, 2011 to see a Resident Neurologist. I had a laugh when I heard her name because it was Bernadette and that would be my aunts name--never knew anyone else with the name....but that meant she must be smart! She spent an hour listening to me and my family with our concerns, examining me, and then when she noticed a few odd things with my eyes and felt it was necessary to call her attending neurologist. I keep thinking back to Grey's Anatomy and was hoping Dr. Shepherd would walk in, but he didn't. No Patrick Dempsey for me! The attending doctor spent a half hour with me as well re-examining me to make sure he agreed with the resident and see what they felt the next step would be. At this point, he called the ophthalmologists office two floors down and got me in immediately with a neuro-ophthalmologist to make sure that the optic nerve swelling was not too excessive and that I didn't need emergency treatment. After hours of eye testing with lots of bright lights being shone in my eyes and trying to find the blind spots in my eyes, overall, they said it wasn't horrible. This was a relief. I do have some blind spots in my eyes, but nothing that would at this point prevent me from living a normal life. However, with being allergic to the medication, it's something that needs to be constantly monitored because it could change any minute.

*sigh* Long winded, I know.

The current plan of action is to see the neuro-optho in a month and re-do all the testing and compare the tests to see how it's progressing. In the mean time, I am taking fioricet for the headaches and it does provide relief, but certainly does not take the headaches away. I am being weaned off of the prednisone that I have been on for two months since it's making me gain weight and I am completely bloated. I have major moon face! I did research a bit after seeing all the doctors on Tuesday and think I may have found a couple diuretics that do not have sulfa, so I've got a call in to the neurologist to see if I can take one of those and have the same results. I also want to talk to her because I think I have sleep apnea and need that to be dealt with as well.

Right now I'm dealing with a nasty cold. The prednisone has completely killed my immune system and I can't seem to get healthy, so I'm really looking forward to coming off of that medication. The problem though is that there is a chance that the headaches and optic nerve swelling will increase as I come off of it, so that's a little worrisome. I have cold-induced asthma, so it's been difficult to breathe the last couple days. I'm very congested and since the pressure in my brain is already double what it should be, the coughing, sneezing, and blowing my nose makes the headaches very bad right now.

The good news is that I feel like I have hope of getting better. I know there are lots of horrible days ahead of me, but that's the nature of the beast. There is nothing I can do about that other than taking it in stride and attempting to make the best out of the situation.

So, that's my least the last three months worth. My goal is to write in here to keep my family and friends updated and hopefully be somewhat of a support for others who have PTC/IIH as well.

This is something I am going to live with the rest of my life, but it will not be the end of me and it will not kill me.

I am going to make it.

Friday, January 21, 2011

Intro to me

Ah, where to start....

My name is Laura and I am a 26 year old female. I work full time as a teacher. I love to swim, enjoy traveling and spending time with my family and friends. All in all, I'm the typical adult....or am I?

After two years of teaching under my belt and several years or neglecting my eyes, I decided it was time to hit the eye doctor to get new contacts. On October 2, 2010, I had my normal eye exam with a new eye doctor since I had moved when I got my job. The doctor did his thing, but during one of the tests he noticed something strange on my eye. He called it a "hole" and told me in a long drawn out speech that it was serious but not serious enough to do anything about at this time. He said that if we didn't keep an eye on it, that it could eventually cause blindness. What?! I was very nervous to hear that and knowing that I have diabetes on both sides of my family, my eyes need to be taken good care of. Basically, he told me that it was likely caused by some sort of head trauma. We ended the appointment by ordering new glasses and contacts, and then made a follow up appointment for October 23rd.

October 23rd came and I went and picked up the glasses and contacts. The new contacts took a little getting used to since it was a big script change and a different type of contact, but I liked them. Throughout the three weeks between appointments I had started noticing what I call a yellow spiderweb in my field of vision, but for some reason it didn't alarm me. It was a very slow onset and didn't full click in that there was a problem until a few weeks later. At the appt. I told the doctor that I was very uncomfortable with just waiting out this eye problem and would like to get a second opinion. He referred me to a doctor that my aunt actually had seen for a similar problem, so I was comfortable going to the eye specialist. However, the earliest I could get in with the doctor was a month away.

I waited the long month and the yellow spiderweb appeared in my field of vision more, but again, it didn't alarm me too much because of the slow onset. When things happen so slow over time, you don't fully notice it. Hind sight is 20/20, right? On November 23rd, I saw the eye specialist. One of his assistants dilated my eyes and also used a numbing drops so that the testing he would do would not be too painful. The main testing done included me laying on the chair that was elevated to his height and having a very bright light shone into my eyes through glass. At this time, he saw that my optic nerves were swollen--something completely different than the reason why I went in. He brought me to another room for more testing. The next test--called Humphrey's or a Visual Field test was to take close pictures of my eyes and what I was or wasn't seeing. They took a series of photos and then injected dye into my blood and took another long serious of photos. This confirmed that my optic nerves were swollen. The doctor at this point was kind of avoiding me which made me nervous. He told the receptionist to call a neurologist and get me an appointment immediately--meaning later that day. After waiting in the waiting room for an hour while she tried to get me in with a neurologist, I finally had to know what was going on. I asked her if I could speak to the doctor again. She told the doctor and he took me back into his room. "What is going on? What do you think is wrong?" He said "I think you have a brain tumor. It's important that you see a neurologist today. We shouldn't wait." At this point the receptionist told him that she wasn't able to get me in later that day and asked what he wanted to do instead. "Get an MRI of the brain and orbits with and without contrast." I got the script and walked out to my car. I sat in my car and just cried. I was alone and scared.

**My headaches are getting bad right now, so I will have to stop and continue the introduction in my next post, hopefully tomorrow.**