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!