Pseduotumor Cerebri, IIH

So I thought I should post an update on the medical issues that I have been faced with... 

On Valentine's Day, 2014, I went in for a lumbar puncture. I was nervous for the results.  Slightly worried that it would be obvious just from the appearance that something major was wrong and I would be sent off to the hospital, admitted immediately, no time to take care of things with the kids or anything. It was a ridiculous fear. I wasn't worried about the procedure at all. Just the results of the procedure. 

Justin met me at the Neurologists office that day. He was lucky enough to get finished with his clinic early enough to meet me for my noon arrival time.  I was so glad that he was there.  After taking my vitals, I was eventually led into the room where the procedure would take place.  The doctor came in, explained how everything would go, and then left the room while I changed.  It was a nearly painless process.  The worst of it was the local anesthetic they used to numb my back before inserting the giant needle into my spinal cavity... It was an odd feeling when it went it. I didn't feel pain, but I could feel when it went into in... The procedure took about 45 minutes.  The nurse held my legs, the doctor did her job and Justin sat across the room, doing who knows what, I couldn't even see him. As they were watching the dial go up and up and up, they were preparing to put an additional meter on, because my pressure was so much higher than normal.  But it eventually stopped and they didn't need to switch meters. Turned out the pressure in my Cerebral Spinal Fluid (CSF) was at 33, and normal is 20-25.  She said it is really high and that I should definitely start the medication to lower it. She was actually really surprised that I hadn't had any blurry vision from the optic nerve swelling.  My diagnosis was confirmed (Pseudotumor Cerebri OR Idiopathic Intracranial Hypertension) at that point and I finally had answers.  (though they were running tests on my CSF just to make sure there was no infection.) She showed me my CSF in the vials after she took it out.  It was completely clear.  Looked like water in the vials... They took about 5 vials I think out to run all their tests. I had to stay laying down for 45 minutes on the table in the office after wards. Then she said I had to spend as much time as possible laying flat for the next 24 hours. (So much for Valentine's day).

As I left the office, I got a call from my Neuro-Ophthalmologist who told me about the results and asked me to begin taking the medication on Sunday morning as long as I didn't have a spinal headache.  So I came home, and I laid on the couch the entire afternoon, evening and most of the next day.  I honestly have no clue how people on bedrest manage for more than a day.  I was going insane by the end of 3 hours! But I listened and with the exception of meals, bathroom trips and an hour sitting in the recliner to give my hip a break, I stayed laying down.  Sunday morning I woke up to hear Jaicie had been throwing up all night (how did I sleep through that, poor girl managed it all by herself), news of a friends baby in the hospital - which Justin rushed off to help, and me - dizzy if I sat up, and light headed and starting a new medication, which I couldn't drive on. YAY Me!  SO the kids and I stayed home from church. Justin visited our friend and their baby in the hospital. Jaicie slept most of the day and the other three didn't full understand why I was still laying down.

Monday morning I woke up to the absolutely worst headache of my life.  When they told me I would have the worst headache of my life after my spinal tap, this is what I expected - when it never came Saturday and Sunday I thought I had escaped it... If I lifted my head off the pillow it hurt more.  II spent the majority of the day laying down. But when I felt a little better, I decided to run a quick trip to the store and to pick up Collin's new mattress.  I needed some caffeine to take for the headache, because I hear my medication makes carbonation taste gross. I shouldn't have gone out, the headache was horrendous after the sun hit my face. But I was able to get done what I needed. Then I came home and laid back down and stayed the way the rest of the day (the kids were out of school that day) Tuesday the headache let up a little, but it was still awful, wednesday it was horrendous again.  I went in for my followup appointment with my Neuro-ophthalmolgist and found out a couple things: 1. the medicine is working, the swelling of my optic nerves has gone down. 2. the medication shouldn't be casuing my headaches - so i needed to go off the meds to make sure I didn't have a spinal leak (cause if I did, lowering it would make it worse and worse, not a good idea). 3. that nothing else is wrong with me, my brain just produces too much CSF and the medication will help that and the swelling will go down. 

So Wednesday night I skipped my meds, Thursday I had a headache, but nothing too horrible. Friday and Saturday I went the whole day with nearly no headache. It was delightful. Saturday evening I restarted the medication, but opted for a gradual build up to the regular dose.  Started with 1 pill 2 times a day. Today I will go up to 1 pill in the morning and 2 at night and Thursday I will go up to 2 pills 2 times a day. Hopefully, this will make some of the side affects (read headaches) stay away! 

So what are the side affects:  1. well, the headaches are listed as a side affect, so far since restarting the headaches I have only had very minor aches, nothing that keeps me down. 2. The tingling!  AHHH the tingling is AWFUL! Imagine your hands, feet and face all falling asleep at the same time and then the tingling starts as they are trying to wake up...you know the tingling I am talking about right? The pins and needles, prickley feeling that everyone hates!  Well that happens all the time to me.  Yesterday one of my feet was tingling so bad that it brought tears to my eyes.  Am I a baby, maybe, but it was truly an awful feeling.  I heard that potassium can help, but I HATE bananas. So I am attempting to drink LOTS of water, because dehydration can contribute to it.  3. Less water retention - who can argue with that...I am retaining less water, which hopefully will help with my weight loss... who knows! 4. Bad taste of carbonation. Um, I am too scared to find out how it tastes, because I want to be able to stomach the taste of it someday when I get off this medication.5. UPset Stomach... I have noticed the nausea feeling a lot lately, and I hate it. But it isn't so bad that I can't deal with it.  Just annoying.

No what it the long term plan... well, I go back in 3 months for a followup with the Neuro Ophtho. I will stay on the medication for the time being. I will continue to work hard to loose weight (which should contribute to lessening of the symptoms). The plan is that I will not always be on the medication. That we will get everything under control now and I should be able to stop taking it. I cannot under ANY circumstances get pregnant (darn, wasn't planning on that anyway) because the medication causes harm to the baby. I will go forward doing everything I can to get myself better, dealing with the side effects and hoping that my 14 pound weight loss thus far will continue and my brain will benefit from that. It has all been a lot to take in.  But I think we are on the trail to getting it taken care of. And it gives me a really good excuse to work harder...and maybe buy an elliptical or treadmill or something I can use to exercise at home! :)