Maybe.
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!
Hi my name is Melissa I'm 22 years old and live in Tampa Florida. I just wanted to say thank you so much for posting so much about your experience with pseudotumor cerebri. If you don't mind I'd like to share with you my experience. On April 30th 2011 I went to the eye doctor to get a new perscription for contact lenses and she noticed that both my optic nerves were swollen but that meant nothing to me at the time. I didn't want her to dilate me because I had to move a lot of furniture that same day so she stressed that it was very important I come back next week to be dilated to confirm that they were swollen. I forgot to go back until 1 month later and went back last saturday June 4th. She confirmed that they were indeed swollen and stressed how important it was that I see someone to find out the cause. She said it could be MS, a brain tumor, or some other crazy things that I can't remember. She gave me a referral to a neuro-ophthamologist, and a regular ophthamologist and said it was very important I see them soon. I called the Drs on the following monday (6th) and they were like $400 for the first visit and I don't have any health insurance so I started panicking a bit. I called my regular family physician who I see once a month for fibromyalgia. He said based on my symptoms and medical history he didn't think it was MS or a brain tumor he thought it was PTC and explained a little bit about it to me, which scared the crap out of me. He said I needed to get a brain MRI to rule out the MS and brain tumor though. He knows I don't have insurance and didn't really stress that it was that important so I called my eye doctor back and explained what my regular doctor said and she said it was very important that I get an MRI ASAP. So I completely freaked myself out and went the the ER after work. They did a CT scan and blood work and said they didn't find anything alarming and gave me an IV w/Dilaudid and wrote me a prescription for Percocet. BTW during the last few weeks my back, neck, and head pain have been getting progressively worse and I feel dizzy and nauseous a lot....
ReplyDeletecont'd.... On tuesday after work I went to a ophthamologist and confirmed that they were indeed swollen and they wanted to do a test but I can't remember the name of it but they use a laser that scans into the back of your eye and builds a 3d topographical map of your optic nerves. But after discovering that I didn't have health insurance the doctor decided it would make more sense to save the money and put it towards seeing a neuro-ophthamologist. So thursday morning I went to see the neuro-ophthamologist who once again confirmed that they were swollen but weren't really that bad but she did all these tests. She also did that neuro diagnostic test that tests where your blind spots are and I had the regular ones that everyone else has and she referred me to have a spinal tap which costs close to $5000 which I don't have. She then said I would probably still have to have a brain MRI because the CT scan doesn't scan the soft tissue in the brain and may have missed something. And then I would have to see a neurologist that would then diagnose me and start the treatment. I feel like I'm being pawned off from one doctor to the other and spending tons of money I don't have. They suggested I go back to the ER and convince them to do a lumbar puncture so that I didn't have to wait for an appointment. I am so lost, confused, and scared. My family all think I'm a hypocondriac and that I'm making this all up even though my mom went with me to one appointment and my boyfriend (now ex-boyfriend as of 6 hours ago) went with me to the ER and the neuro-ophthamologist. The headaches are excrusiating and I feel like my brain and spine or being squished. I haven't gone and got the spinal tap yet because I'm waiting to see if my mean boss will give me health insurance 4 months early even though he won't help pay for it, it will still save me from $5000 for the spinal tap and whatever other tests and doctors I have to see. I wish this was all so much easier. My immediate family are the only ones that know about this and I'm afraid to tell anyone else because I don't want to scare them or scare myself anymore than, I and the doctors, already have. I just want to know what this is already so I can start getting some relief from the migraines, back pain, dizziness, and nausea. But every single doctor I have seen or spoken with all think its pseudotumor cerebri. I'm afraid of putting the spinal tap off until I get insurance because what if that takes too long and then I'm afraid of getting the spinal tap now and not having the money to pay for it and getting myself more and more into debt. I appreciate all the posts you have shared with us and I am completely open to any advise or suggestions you may have for me. Thank you so much for your time. -Melissa
ReplyDelete