Sunday, June 5, 2011

Last week of school and a few days until foot surgery....

My IH was acting up pretty bad in May, but seems to be a bit better with a doubled dose of the diuretic to help reduce the spinal fluid. I still haven't heard back from my neuro down at Rush, so I am giving up on her. She is moving to Washington state anyway, so I need a new neuro regardless. I tried getting in with a Neurosurgeon that a facebook IH friend sees at CDH, but he is out of the country for over a month and I know that I can't wait that long. I called my PCP and got a recommendation from her office for a neuro, so I am trying to get in with them. I'm having foot surgery on Thursday, so I don't think I'll wanna even pick up the phone. I haven't been feeling well with the heat the last few days....I've been feeling like I'm going to pass out a lot. I've been drinking water at work like crazy and have even been putting a huge box fan ON my desk to keep me cool if I'm feeling that bad. Didn't really feel like passing out in front of the kids. Who knows what would be tattooed in permanent marker on my face when I woke up! I've been resting a lot when I get home. I usually take a few hour long nap after work. The IH is really draining me of my energy but there are only 2.5 more days of work, so that's a bit encouraging.

Not a whole lot new. Atleast this time I haven't been to the ER twice for treatment! I've been able to manage the headaches better between the fioricet and the vicodin and they are not as bad now that they doubled the diamox.

I'm wishing all of my IH friends a pain-free week and please enjoy the sun and pool for me over the next month since I won't be able to swim from the surgery! :)

Sunday, May 29, 2011

Struggles of the last month...

It's been a very busy end of the school year (just a reminder--I'm a school teacher). My symptoms had been getting very bad and I spent one entire week calling me doctor every day trying to get a hold of her. I knew it was time for a spinal tap and I was trying to get a script from her to go get one. When she finally called me back on Friday, she sent me to the ER to get one. I get very frustrated with her, because when I feel like my vision is getting worse and fast, then I call her right away, but the problem is.....I wouldn't have needed the additional ER bill if she had done her job and gotten back to me right away. The spinal tap was almost two and a half weeks ago. I had called her back the following week to try and get an appt to talk about going to a larger dose of diamox and jumping on topamax which she mentioned to me on the phone. Well, the office has not called me back and I'm frustrated. Yet another doctor who doesn't return calls! (That's two neuros just since being diagnosed in December of 2010.)

The midwest has been a mess of storms and for the first time since being diagnosed my brain was a mess during the storms (and even when it wasn't). My pressure is so high again (less than two weeks after the tap) that I have been really having a difficult time. I went to the ER yesterday (Sat) and was given two rounds of dilaudid, but when I got home it had worn off and I was right back to where I was. The ER doc gave me another script for vicodin and doubled my dose of diamox since I was at a lower dose than what is considered "starting" dose. Only had the double dose last night (haven't taken my nighttime meds yet today) and of course haven't noticed a difference, but hope to soon. They offered another spinal tap at the ER and I declined. I had too much pain with my last one and unless they are going to use a general anesthesia, I can't keep doing this to myself. I'm going to call my PCP tomorrow (doubtful they are open, if not Tuesday) and ask them to call and get me an appt with a neurosurgeon immediately. I constantly have a pressure headache, but also have a spot on the top/right/frontal area of my head that feels as though there is a knife being stabbed into it. I am nauseous, constantly overheated, have the yellow spiderweb over both my eyes, have eye pain all the time, and have the whooshing/constant noise as well. To say the least I have been miserable. I've been pushing through work each day knowing I am getting down to the end, but it's been very hard to walk into work feeling like this.

Foot surgery in ten days, and summer comes in 9 days.
Signing off for now....

Sunday, May 1, 2011

What a hassle!

For the past month or so, for the most part I've been doing better. The headaches were not as often or severe and I could manage with them on my own. My PCP started me on Diamox to see if I was allergic to the sulfa or if my "rash" was from being in the sun on Diamox which I didn't realize I wasn't supposed to do and of course was on vacation in Mexico/California. I've been on the Diamox for over a month and have not noticed a single rash, I was on such a low dose just to be safe...and now we're going to up it. I'm on 250 mg a day right now. The past week (maybe week and a half) my headaches have been getting worse again. I feel like my pressure is up, but I'm almost afraid to tell my neuro because she will send me for another LP which means taking off of work (out of sick days=no pay) and going through the horrible pain. The last LP I had left me with a horrible taste in my mouth.....It was a two hour procedure and very very very painful.

I'm a member of an online support group for pseudotumor on If you are not a member, I highly recommend joining as I've found some wonderful friends, received some great support and advice, as well as being able to provide others with my own personal experiences. The past couple days, members have been posting regarding pseudotumor diet in order to reduce headaches and other symptoms. I'm still relatively new to this dx as I've only had it for about six months and on my good days I still pretend I don't have it (wishful thinking I suppose) which means I didn't really know from any of my doctors that we are/were supposed to reduce sodium intake. I know it's a given that we're supposed to eat healthy if nothing else to treat our bodies right, but geez. I took a look at a few websites and it's going to be really difficult to follow the diet. I know I need to lose weight and that will surely help, but geez, I have never had to watch what I ate before (ie glucose, sodium, etc.) and as it is I'm not one to suck it up and cook for myself. So, other than my goal of losing weight (which I've lots about 10lbs in three or four weeks), I really need to work on the foods that I'm putting in my mouth. So, I guess instead of focusing on losing weight, I will focus more on what I am actually eating as that will help the weight issue as well.

What a hassle it is going to be for me to try and take better care of myself. I've tried to do it before being dxd, and now of course I have a much larger reason for doing it. I know that I can do it if I put my mind to it, so I've got to focus on that.

We can do whatever we put our minds to, but yes, we really DO struggle with it. I am here for you, and I hope that all of you are here for me. Have a wonderful week to my family and friends (and whether I know you or not, you too)!

Together, we can do this!

Sunday, April 17, 2011

Two and a half weeks and......

no allergic reaction to the Diamox! So far so good. I am going to try and get a hold of the doc tomorrow to talk to her and see if I can up the Diamox and begin on the Topamax. I hate being on Diamox, but if it helps with the headaches, how can I not take it? It gives me nasty acid reflux, nausea, and makes me vomit. And the worst thing, I can't be out in the sun at all on the medication. It's not a huge deal yet, but I enjoy swimming during the summer. The headaches are definitely improving. I feel like I have made a huge leap forward. They are less in both severity and frequency, but I'm also trying not to take that for granted. I know they can come back at any time and with a vengeance! The whooshing sounds seem to be increasing a bit right now, so that leads me to believe that my pressure is up again. I'm hoping that doesn't mean another tap, but we will have to play it by ear (no pun intended!) and see. A little less than two months and we are done with school. The day after we finish up, I'm having foot surgery, so that'll put me out of commission for almost half the summer. As always, thanks for reading. It's nice to have the support and to also be a support for others with this disease.

PS. Anyone who is reading this and is on Topamax....there was a recall of more than 57,000 bottles of the meds because of a strange odor. So, do a search on google and immediately stop taking them!

Tuesday, March 29, 2011

This is NOT a death sentence!

It's been a long month, but I promise to update as fast as possible! I've been very sick with an upper respiratory infection and double ear infections. On top of that, we had to put my cat down, so I've been very bummed and missing her. In between all of those, I'm still trying to find a job for next year.

I'm on spring break this week (reminder: I'm a teacher), so I have lots of doctors appointments scheduled. Yesterday, I drove into the city (about an hour away) to see the neurologist. She thinks my pain levels are getting much better, I've gotten through the rebound headaches (FINALLY!) and the headaches are still there but less severe than they were. She said she felt like my eyes were doing better, but that I still needed to keep the neuro-opth. appt today (I'll get there next). She is going to double my dose of amitriptyline / elavil (used for pain). I also mentioned that I'm not positive that I'm allergic to Sulfa and she recommended I see my PCP to see if there is a test for it or if she's willing to monitor me more closely to see if I'm allergic or not. Things would obviously be much less complicated if I don't. I also mentioned that I've been losing a ton of hair lately, to the point that it completely stops the water in the shower from flowing down the drain. It seems to be coming out in clumps (no missing patches however). I asked if it could be related and she felt it was not, so I'm going to go see my PCP about that as well and see if I've got a thyroid issue going on.

This morning, I went to the podiatrist because my plantar fasciitis that I have had for three years is not getting any better, just worse. I spoke with him about me losing insurance and we both agreed that it's time for me to have surgery, so I go back again in two weeks for a check up and we will schedule a surgery date at that time.

After that appointment, I raced back downtown to see the neuro-opth. Had my visual fields test done and it was better today than it was last month. Odd, but good news nonetheless. When he looked in my eyes, he said that they were "98% better" than they were when he first saw me. WOOHOO! More good news! And then instead of seeing him next month, he doesn't want to see me for 2-3 months. He said "I know I don't have to worry about you. You know how to get a hold of me if you feel there is a problem, you know the warning signs, and you're on medication that should regulate this from now on. There's no reason for me to see you as often." It felt great to hear that.

One more visit this week--on Friday. I'll see the PCP to see about the Sulfa allergy and see if I've got some thyroid issues going on, but overall, I do feel much much better.

I just have to say......This is NOT a death sentence. My life is not over and darn it, I will not stand by and let this disease get the best of me.

Tuesday, March 8, 2011

Can I sail through the changing ocean tides?

Took my love and I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Well, the landslide brought me down

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changin'
'Cause I've built my life around you
But time makes bolder, children get older
I'm getting older too, well

Well, I've been afraid of changin'
'Cause I've built my life around you
But time makes bolder, children get older
I'm getting older too, well, I'm getting older too

So take this love and take it down
Yeah, and if you climb a mountain and you turn around
And if you see my reflection in the snow covered hills
Well, the landslide brought down

And if you see my reflection in the snow covered hills
Well maybe, well maybe, well maybe
The landslide will bring you down

Yes, yes, I did steal those lyrics, but they truly sum up how I'm feeling right now. I feel as though my life is in shambles and it seems to all come down to one thing--my illness.

Went to the neuro-opthalmologist about a week ago. My eyes are improving. The way that I understood him (but who knows because he doesn't know how to break down the medical jargon for me!) was that I still have papilledema but that it's much better. He wanted to see me in two months and I wouldn't agree to that--I'll be back there in three weeks for another visit and visual fields test. However, this visit frustrated me to no end. It's nice to know that my eyes are getting better, but they did not seem concerned about my double vision at all. The doctor told me that if it happens when I'm driving to just close one eye. How comforting! Also, if my pressure is getting better, which we saw by the lower numbers in the tap that it is, why are my headaches getting worse? Why are they getting completely unbearable. I thought they were bad before and now they seem atleast five times worse. I wonder if they can get even worse than they are now. I'm worried that if we can't get the pain under control soon that it will get much worse and really be debilitating. Which leads me to....the day prior to my NO visit, I found out that I lost my job. I don't know how soon I will lose my health insurance and it's very frightening. I am going to break my lease or buy out of it and move in with my parents to in the long run help save money and it'll be nice to have the extra support on my bad days, but they obviously can't provide me with health insurance. I don't know what I will end up doing. Back to the pain that I am having....I had to call my neuro on Friday. I hate calling her to bug her since I know she is busy and working at two different offices and has her own life to deal with, but I had to have her paged. I'm sure in time, I will feel more comfortable speaking up for my needs, but I have never been one to feel comfortable asking for help or inconveniencing someone else. I have always tried to put others first and it kills me now that I have to try to put myself first at times. Where was I? Ugh. I have to go re-read and try to figure it out. Oh....the phone call. Anyways, I told her that I've been having trouble going in to work because of the pain and now lost my job and all of that. She is trying me on a new medication to try and reduce the pain because the fioricet doesn't seem to be working anymore as my headaches are getting much more severe. The new medication is called Elavil. It's typically used as an anti-depressant but I guess is supposed to help relieve migraines. I'm not really sure how it'll work, so we will have to wait a few days and see how it goes. My thought though is that pseudotumor headaches are majorly different than migraines. To me, it's like comparing a broken leg to tendonitis, yes they both hurt, but are not the same pain nor do they have the same cause but yes we call them leg pains, right? I don't know, but hey, if it works, I'll be happy. At this point, I'm willing to try just about anything to avoid having a shunt.

Can I sail through the changing ocean tides?
I don't know, but I'm sure as hell going to try!

Saturday, February 26, 2011

Spinal Tap #2

It's been a very busy month for me between work and dealing with all of the symptoms of ptc.

The bronchitis and cold-induced asthma made me miserable for atleast two weeks, and even now, at the end of the month, I still don't have my voice fully back despite feeling ok.

I contacted my doctor about two weeks ago and told her that I had been dealing with LOTS of double vision. I hadn't fully put two and two together to realize that what I was experiencing was double vision. I just thought I was overtired, which I was, however, had never dealt with that before. The double vision felt like I was crossing my eyes, and then they would shake. The problem with this was that my eye muscles could not pull my eyes back to the proper position they should be in. I am actually seeing my neuro-opth. on Tuesday so this is something I am going to discuss with him when I go in. It seems to be getting worse.

When I spoke to my doctor (neuro) she felt that I should go and get another spinal tap to help reduce the pressure in my brain to see if that would help the double vision. Not the answer I was looking for, but I knew this was probably what she was going to say. I scheduled the tap for the friday before a long weekend so that I had time to just sit and relax or sleep to help recover.

The tap was HORRIBLE. Much worse this time than the first one I had had. I hate to speak poorly of a doctor, it's not my field of expertise and as a teacher, I hate it when someone talks bad about another teacher that isn't in the field and doesn't know what they are talking about, however.....I truly do not feel as though this doctor was experienced enough with doing taps. Normally a thirty minute procedure turned into a two hour procedure. The doctor had to give me two local shots to help numb me, and even using the floroscope machine (xray) he still could not find the right pocket to get the fluid. He ended up doing a tap four times!!!!! Luckily this was my second experience and not my first, because I think if it was my first, I would have really freaked out. It was obviously a painful experience. I handled it better than the first one I had, but I think part of that was that I knew what to expect. It's been over a week now, and my back is still very painful. I find it hard to stand for a long time, I get stiff easily and it's been hard to teach!

The good news about the spinal tap was that my pressure went down from the first tap I had. Opening for my first tap in December was 36 and this time it was 29. So, I am hoping that is due to the diuretic working. My problem is that sometimes I forget the diuretic or don't take it on purpose. It's difficult to constantly be running to the bathroom all the time and with my schedule at work, I can't just get up and go when I need to. Someone has to watch the kids! Ugh.

A few days ago, I ended up going to get a sleep study done because I feel that I have sleep apnea and I know that isn't helping me in dealing with the ptc. I haven't gotten the results of that yet, but should get them in a few days and then begin to move forward with a cpap machine. Kinda stinks, but I feel that my health is important enough to try and get a good handle on it and I know that if I am better rested from better sleep at night, it's going to make it a lot easier to deal with the headaches, etc.

Well, today has been a rough day with headaches, probably because I had been overdoing it all week with testing and work and it is finally catching up with me. I am supposed to be going to my sister's house this afternoon (an hour away) to celebrate my sister's and dad's birthdays and I'm nervous about driving because I've had some nasty headaches although they are better now, I'm worried that if I drive there and it gets bad again, I won't be able to drive back. It's frustrating because I am not close to my family (distance wise) and it's difficult to get the help I need sometimes. *sigh*

Friday, February 4, 2011

Good news?

Hope so! I was just kinda re-reading some of my earlier posts and noticed that I was commenting several times about how I was really dizzy and losing my balance like crazy.

Since I've been on that new diuretic, I haven't noticed walking into things (other than a snow pile today that was not from losing my balance but the fact that I wasn't paying attention to what I was doing) or a major battle with dizziness.

Not to get graphic, but my toilet and I have been becoming closer lately, and I wasn't sure if it was because I was pushing fluids since I'm really sick right now (bronchitis and cold-induced asthma) or if it was the diuretic, or perhaps even both. But now, I'm thinking that the diuretic is working. It hasn't touched the headaches, but I know that a lot of the headache pain right now is from being so sick and coughing and congestion and all that crappy stuff.

So, I'm hoping that once I kinda get past this flare up of bronchitis and asthma I'll see more of an improvement with the headaches. That would be a huge blessing.

All in all, I think that the diuretic is working to reduce the CSF at the moment. Spironolactone, I love you. Please keep working for me.

 Crazy picture of me from the cruise--but this sums up my thoughts right now. :)

I'm feeling very hopeful. Maybe this will help me get over the cold faster too!

Wednesday, February 2, 2011

The worst 12 hours of my life?

It's been a few days since I've posted an update, so I figured it was about time to update you guys.

I have this lovely cousin who has been a huge encouragement to me. She is a year younger than me and when I moved away from my parents (and north an hour and a half--ten minutes away from her) we got very close. She had also just graduated college and was getting her masters and applying to Dental School. Well, she got into Dental School out in Arizona and this semester she is taking pharmacology. What a blessing it has been to have her around! Even though she is about 1,840 miles away, she has been so helpful with different medications that I've been put on. If she doesn't have the knowledge about it, she has been willing to look it up for me. When I told her that I was allergic to sulfa and could not take the diamox to reduce the spinal fluid she told me it was such a common allergy that there HAD to be something else out there to replace it. After that, I began doing internet searches and finally after two weeks of searching, I found four different diuretics. I put a call in to my neurologist and told her about the four medications I found and asked if she was able to look into them and see if any of them were possible matches for me. Luckily, one was and today was my first day taking it. So far, I haven't noticed a difference, but it obviously needs time to work and it's been a rough 24 hours for me....which leads me to.....

The Chicago Blizzard of 2011.
We had heard for a couple days that we were going to get hit with snow, and we knew it was going to be bad, but little did we know that it was going to be 20 inches of snow with winds gusts at 70 mph. WOW. About 7pm yesterday my power went out. The power was out for a total of 12 hours and the temperature in my apartment had to have gotten down to about 50. The roads were horrible and completely impassible so it wasn't a possibility to head to my aunt and uncle's house to keep warm. How did this effect my pseudotumor? Not in a good way, I'll tell you that much. I have had horrible pressure headaches the past couple days first off. I've also been battling that cold, which was made worse by sleeping in the cold. Then, when the power went out the smoke alarm began beeping about every ten seconds to let us know that the power was out and it needed power. Well, my smoke alarm would not come off. I had to get up on a chair several times trying to fight with it to disable it. Every time I was up on the chair I was horribly dizzy, lightheaded, and the headaches just increased with the way I was staring up at this darn thing and then of course it was very painful on my eyes to stare so far up. Well, throughout the night, it stopped beeping and began going off constantly. The only salvation I had was the ability to close my bedroom door, but the smoke alarm was a foot away from the door, so I could still hear it. My headache was so horrible, it kept waking me up throughout the night. I was getting over the cold, but now it's back in full force from last night and long story short, I'm a complete mess. I hate to even admit this, but I haven't even showered or changed clothes yet today and it's 8:30 at night. I've been dealing with bad headaches still, despite taking my medicine to help get rid of them. The pressure buildup is amazing. The power came back on a little after 7 this morning, so I had some breakfast, took some more medicine and then ended up going back to bed. I spent the entire day in bed today trying to recoup from the 12 hours of no heat and the headaches and everything. Even now, I'm still not rested, my eyes hurt, and I just feel beaten to the ground. Luckily school was cancelled for today and is cancelled again for tomorrow. I'm almost hoping for Friday as well. It's been hard to "dig out" when you live alone and I can't tell you how difficult it was not having heat for 12 hours when you've got a cold to begin with and deal with such difficult health problems. I obviously took a few pictures from the safety of my apartment. The picture is from about 7am when it was still snowing pretty bad. I haven't even gone into the hallway to look out the front door to see what the apartment complex has done, and I'm afraid to see the state of my car. I know it's going to be a huge challenge for me to be outside in the cold shoveling my car out of the parking spot with these headaches. I seem to notice that the headaches get much worse in the cold. I don't know what the temperature has to do with the spinal fluid and pressure on the brain, but I'd sure like to know. I feel like the more I know about pseudotumor and the more I understand about it, the easier it will be to fight this. But, I'm not going to lie, it depletes me of all energy I have and it's hard to fight something with no energy to do so!

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.**