Sunday, June 1, 2014


I have been trying to keep it together as far as this stupid disease goes, but I am so frustrated.  On the outside, everything appears to be the same.  I don't look any different than I did 6 months ago before I was diagnosed, but on the inside I am a total different person.  Here is a list of the changes -

  1. I have constant ringing in my ears.  It drives me crazy!
  2. Most nights I go to bed with some sort of headache.  Luckily they are typically mild, but I would love to go to be pain free once in a while.
  3. It's not just my head that hurts anymore, but my neck and shoulders constantly feel tight all the time too.
  4. I can't remember anything.  This morning I couldn't remember if I had taken my morning medication.  How awful is that?  Even Tessa is picking up on how bad my memory is becoming.  I was NEVER like that before...that I can remember.
  5. I have always been a smart ass, but this PTC makes me feel like a dumb ass at least 5 times a day.  I forget words mid-sentence.  I lose my train of thought.  It is embarrassing to be in a professional meeting and have to "wing it" because my brain isn't working.  The other day, I went to take the recycle out.  Instead, I emptied the bathroom garbage can into the recycle bin.  Talk about a brain fart!
  6. I have always had self-esteem issues, but this disease makes them 10x worse because I can't trust myself to not make a cognitive mistake and embarrass myself.
  7. When I have bad headaches, I am way more short and moody than I ever was or intended to be.
  8. I become frustrated at smaller things faster.
  9. I become nauseous for no reason.
  10. I find myself having a hard time regulating my body temperature.
I want to be healthy and be a fun mom and wife for Tessa and Broch.  I want to be able to make lifelong memories with them.  Tonight I learned that this disease has effected some to the point where they can't even ride the tea cups or merry-go-round without repercussions.  Talk about being bummed.  I LOVE riding rides, and I don't want to be the mom that is always sitting on the sidelines because of PTC.  I realize that everyone reacts differently.  This is just more motivation for me to get my butt out of bed earlier in the morning and get walking.  I am also going to start a new DDP Yoga class tomorrow night.  I am pretty excited about that as well.  I know that when it comes to motivation, I am my own worst enemy.  I need to get out of my own way and see what I can do if I set my mind to something.  I want to live life, not watch it pass me by.

Saturday, April 5, 2014


So, far Topamax has been working out pretty well.  I haven't really experienced any side effects with the exception of carbonated beverages tasting like metal.  But in all honesty, I could do without soda if I had to.  For the past two weeks, I only took 1 pill a day.  Today is the day that I up my dosage to 2 pills a day.  I am hoping that things continue to go as well.  I will keep you updated.

Sunday, March 23, 2014

Next Steps

On Tuesday, Broch took me to Peoria for my lumbar puncture.  Having had a pretty bad experience with my epidural with Tessa, I was pretty nervous.  Luckily, my doctor prescribed me a sedative to help with anxiety.  Once we got there and were checked-in, I was feeling pretty positive about the experience.  It really wasn't as bad as I thought.  They numbed the area on my lower back.  Then they used a fluoroscope x-ray machine to look at my spine.  That way the doctor would be able to see exactly where to insert the needle.  Although she did hit my vertebrae a few times (the space is really small between the vertebrae), it was relatively painless.

She had to take 3 vials of spinal cord fluid to send to the lab, and she was able to tell me my starting pressure.  The normal range is 20 and below.  20-25 is a gray area, and anything over 25 is considered elevated.  My starting pressure was 27.  I have read about people having starting pressure of over 50, so in the scheme of things it could have been a lot worse.  I was sent home and instructed to lay flat for the rest of the night.  That may have been the most difficult part - :)

Dr. Keung called me on Friday to let me know that my lab results were in.  Everything looked fine with my spinal cord fluid.  Since with psuedotumor there is no real tumor, we have to eliminate any other possible cause in order to positively diagnose with PTC.  Anyway, we have eliminated all other possible causes and now are 100% sure that it is PTC.  She prescribed me a new medication called Topamax to help lower the pressure of the fluid.  The medication combined with weight loss is the treatment plan.  So, I will take the meds and do my best to become healthier through exercised and portion control.  I need to call her back in a month to let her know how the medication is working, and then I will set up a follow-up appointment for sometime in May.

I will do my best to keep you updated as we continue this journey.  Thank you so much for your support!

Sunday, March 2, 2014

The Good, The Bad, and The Ugly

On Thursday, mom and I traveled down to Peoria to see Dr. Keung (pronounced Kern).  We arrived early, so I was able to get a series of tests done and out of the way.  I had to do a peripheral vision test, have pictures of my optic nerves taken again, have my optic nerves measured, as well as the regular eye chart exam. 
 When we saw Dr. Keung, we were able to see my MRI photos.  It is so weird seeing your brain and eyeballs from all different angles!  I was talking to doctor about all the side effects from the Diamox.  She suggested we stop the meds for the next 3 weeks.  We also decided that the best way to proceed is to go ahead and have the lumbar puncture completed.  There was concern after the MRI about having it done because of the positioning of my brain (my "tonsils" of my cerebellum are positioned a little lower than most normal brains).  There is a 1 out of 1000 chance that the lumbar puncture could cause them to shift even more.  Dr. Keung and the radiologist spoke about it and feel comfortable pushing ahead with the puncture. 
So, Dr. Keung ordered a series of labs and scheduled a lumbar puncture for March 18th.  She assures me that they use an x-ray to help them guide the needle.  They will numb the area, and I should hardly feel anything.  I just hope that she is right!
It has only been 3 days without the medication, and all the side effects are gone!  Unfortunately, the headaches are back.  :(  I certainly hope that I can get them under control using over the counter medications. 

Monday, February 24, 2014

Side Effect Hell

Sometimes I wonder if the benefits of my medication outweigh the side effects - little to no energy, tingling in my feet and sometimes hands at random times, metal taste in my mouth, numb lips, and mood swings that change more often than the weather in Illinois.  This will be one of the biggest issues that I discuss with my doctor on Thursdsy.

Wednesday, February 5, 2014

Things I Have Learned So Far...

Below is just a list of things I have learned about PTC in the past 2-3 weeks.  

  1. PTC is also called IHH (Idiopathic Interacranial Hypertension).  Basically it is like high blood pressure, but it is high spinal cord fluid pressure in my brain.
  2. Only 1 out of 100,000 people suffer from PTC.
  3. Although there is no real known cause, it does tend to occur more often in women of child-bearing age who are overweight.
  4. Every journey is unique.  After reading about some people's struggles online, I believe that my case was caught very early.
  5. IF PTC goes untreated, it could result in vision loss.
  6. You can't really cure PTC.  You control it through medicine and weight loss; however, surgery may be needed in some cases.
  7. Some people have lumbar punctures regularly to relieve the pressure.
  8. While others have surgery to have a shunt placed to have the access fluid drained into another area.  

And the Journey Begins

My journey began very simply at an regular eye doctor's appointment on Monday, January 13th at Illinois Eye Care in Spring Valley, IL.  It had been 2+ years since I had been to the eye doctor, so I was way overdue.  I hadn't noticed a change in my eyesight, but I was looking forward to updating my frames.  :)
When I got to the office and filled out the paperwork, I was offered an additional test that my insurance wouldn't cover.  It was a picture of my optic nerves that was "highly recommended" by the doctor.  The additional cost was very minimal, so I went ahead and agreed to it, and boy am I glad that I did!  When the doctor came back in to go over the pictures and the rest of the tests, she informed me that my left optic nerve appeared inflamed and swollen while my right looked normal.  At first she told me I needed to get in to see my regular doctor as soon as I could, but then she decided to refer me to an ophthalmologist.  They called later that night and told me I had an appointment on Thursday, January 16th with Dr. Finkelstein.
Dr. Finkelstein was very nice.  They ran the same battery of tests that Dr. Klein did the previous Monday.  They also took pictures of my optic nerves again.  I was there for 2 hours and was the last patient to leave.  Dr. Finkelstein agreed that it was odd that only one optic nerve would be inflamed.  He said it could just be the way my eyes have always been, or it could be something more serious.  He did mention the possibility of a pseudo tumor, but he thought I may be too old for that.  So, he referred me down to St. Francis in Peoria to an Dr. Kattah and his partner, Dr. Bonnie Keung.   Dr. Finkelstein said I needed to get down there either tomorrow (Friday) or the following Monday.  I said that Monday, January 20th worked best for me since we were already off of school that day.
By that time, I am already freaking out.  Everything had been moving along so fast, so of course I jumped to the worst conclusions.  That Friday, I heard from Dr. Finkelstein's office.  I had an appointment for Monday, the 20th at 3:30.  Dr. Finkelstein even called down to set the appointment up himself.
Luckily, Broch had Monday off as well so neither of us had to miss work.  My parents were kind enough to spend the day with Tess while we were in Peoria.  We got down to Peoria early and had lunch then headed over to the hospital.  Once we checked in, it wasn't long before we were called back.  Again, I had to go through the same battery of tests and have pictures taken of my optic nerve. Then they dilated my eyes.  Having had this done 3 times in a week, I was pretty use to it by now.  Dr. Keung came in a looked at my eyes and the pictures.  We decided that to get to the bottom of this we needed to do an MRI.  She wanted pictures of my orbits (eyes), brain, and the blood vessels at the back of my neck.  I could either have it done in Peru or in Peoria.  I opted for Peoria so that everything was done at one place.  They said they would call with an appointment time after getting pre-approval from my insurance company.
So, unfortunately we went home without any new information.  She did mention pseudotumor cerebri again, and said that if the MRI was clean then next step would be a lumbar puncture to see if there was a lot of pressure in my spinal cord fluid.  After having such a difficult time with my epidural when I was in labor with Tessa, I did not like the sound of a lumbar puncture.  She did say that she would call us 24-48 hours after the MRI was taken.  She said no news was good news, and if we hadn't heard from her by day 3, we should call.  I got a call later that week saying I had an appointment for an MRI on Monday, January 27th.
As luck would have it, we had a cold/snow day on that Monday.  So, I didn't need to take off work again.  My mom went with me so that Broch didn't have to miss work, and Tessa went to daycare as usual.  When we got to the clinic we were told they were running about an hour behind.  I was able to get my blood tests done while we were waiting.  I was so nervous!  I went to the bathroom 5 times before they called my name to go back.  Once they called me back, they said it would take about 1 1/2 hours to get all the pictures.  I was NOT excited about that.  I was prescribed a sedative to help with the anxiety of the MRI, but it didn't really help.  Because they were taking pictures of my eyes and brain (my insurance didn't approve the MRI of the blood vessels), I had to have this mask thing over my face.  It was kind of like a catchers mask, but only on the lower half of my face.  I was able to listen to music, but the noise of the machine kept giving me headaches.  I was getting really anxious.  After about 50 minutes they pulled me out.  I was so excited!  I thought I would be able to sit up and calm myself down, but I was wrong.  I had to stay lying down so the pictures lined up.  They only pulled me out to put in an IV of contrast so that they could take about 30 minutes more of pictures.  I was almost in tears by the time it was done.  My anxiety level was so high!
I didn't hear back from Dr. Keung by Thursday, so I put a call into her office.  She called me back shortly after.  She said the good news was that there were no tumors anywhere.  However, both of my optic nerves were curved probably from the pressure of my brain producing too much spinal cord fluid.  This was also probably what was causing my headaches.  Typically the next step would be a lumbar puncture as a final piece of evidence to back up the diagnosis of PTC, but the MRI showed that the gap between the bottom of my brain and my spinal cord is smaller than usual because my brain is tipped back.  It's just the way God made me, I guess.  Anyway, a lumbar puncture may make the brain tip even more making that space even smaller.  So, she didn't want to take the risk.  She did put be on 250 mg of Diamox twice a day.  So, far I am experiencing a lot of side effects - numbness in my feet (sporadic), numb lips (sporadic), feeling of weakness and being tired, metallic taste in my mouth when drinking anything carbonated, and diarrhea.  I am hoping these go away as my body adjusts to the medication.  I've only been on it since Thursday, so only time will tell.  :)