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*