Saturday, December 31, 2011
GIANT CUPCAKE
I told you I would show you an awesome cake. Chocolate cake with peanutbutter chips and peanutbutter buttercream frosting.
Exploding Dog
So he drew this comic and it is almost like he drew it just for me. Sometimes that is what IIH makes me feel like. There are times where your head hurts, your neck and shoulders hurt, your eyes feel swollen, and you just want to lay on the couch and cry.
So thank you Sam from http://explodingdog.com. I love all of your stuff and I think you're great.
Surgery and Other Things
So we talked about acetazolamide. It is a terrible terrible drug, but it means I still get to see so I try not to complain. The other drugs used to treat IIH are all carbonic anhydrase inhibitors like acetazolamide. They are not used as often, but are sometimes used in conjunction with acetazolamide and when acetazolamide cannot be tolerated. So in essence, they're all pretty much the same.
Corticosteroids are also occasionally used but they are more for helping acute symptoms of swollen optic nerves. I was prescribed steroids to help clear up my double vision. They worked. They can actually cause a rise in pressure when they are discontinued.
There is also the good old fashioned lumbar puncture (spinal tap). This is actually a relatively painless procedure (thanks to the local) done to measure intracranial pressure and provide some relief of acute symptoms. It is not a permanent fix. To put it in perspective, I had a spinal tap on a Tuesday, my pressure was 60. I was back in the hospital by Thursday with a horrific headache and my pressure was already back up to 40. Cerebrospinal fluid builds quickly. Your body is constantly making it and if it is not being absorbed effectively it doesn't take long for that pressure to climb.
There are two surgical options for patients with IIH, but these are used only as a means of last resort. They are used if medication is not effective or if the patient is in imminent danger of permanent vision loss.
The first is an optic nerve fenestration. Pictured to the right a window is cut in the sheath that surrounds the optic nerve allowing fluid to escape putting less pressure on the nerve and therefore decreasing swelling. This is done when sight is in danger and is less about decreasing pressure than it is about saving sight.
The other surgical option is a shunt placement. Shunts help to drain fluid into another place in the body where they can be absorbed. The most common place in the stomach. Shunts can be placed in a few places
There is a third type, but it is only used when an LP or VP shunt is impossible.
When I tell people about IIH, they think to themselves well get a shunt and quit your complaining. Shunts are tricky little buggers. Some people have absolutely no issues while some (to the tune of 50%) of people have to have constant revisions. Shunts can become blocked causing infection and can also malfunction causing a build up of cerebrospinal fluid. Shunts can also take too much cerebrospinal fluid causing low pressure headaches that can lead to a bleed in the brain.
If you have gotten this far, I thank you. I will totally have cute cake pictures for you later!
Corticosteroids are also occasionally used but they are more for helping acute symptoms of swollen optic nerves. I was prescribed steroids to help clear up my double vision. They worked. They can actually cause a rise in pressure when they are discontinued.
 |
| Optic Nerve Fenestration (image credit) |
There is also the good old fashioned lumbar puncture (spinal tap). This is actually a relatively painless procedure (thanks to the local) done to measure intracranial pressure and provide some relief of acute symptoms. It is not a permanent fix. To put it in perspective, I had a spinal tap on a Tuesday, my pressure was 60. I was back in the hospital by Thursday with a horrific headache and my pressure was already back up to 40. Cerebrospinal fluid builds quickly. Your body is constantly making it and if it is not being absorbed effectively it doesn't take long for that pressure to climb.
There are two surgical options for patients with IIH, but these are used only as a means of last resort. They are used if medication is not effective or if the patient is in imminent danger of permanent vision loss.
The first is an optic nerve fenestration. Pictured to the right a window is cut in the sheath that surrounds the optic nerve allowing fluid to escape putting less pressure on the nerve and therefore decreasing swelling. This is done when sight is in danger and is less about decreasing pressure than it is about saving sight.
The other surgical option is a shunt placement. Shunts help to drain fluid into another place in the body where they can be absorbed. The most common place in the stomach. Shunts can be placed in a few places
 |
| Lumboperitoneal Shunt (LP Shunt) image credit |
This shunt is placed in the spinal chord and drains into the stomach where the cerebrospinal fluid can be absorbed.
 |
| Ventriculoperitoneal Shunt (VP Shunt) image credit |
A VP shunt is placed in the brain and most often drains cerebrospinal fluid into the stomach where in can be absorbed.
There is a third type, but it is only used when an LP or VP shunt is impossible.
When I tell people about IIH, they think to themselves well get a shunt and quit your complaining. Shunts are tricky little buggers. Some people have absolutely no issues while some (to the tune of 50%) of people have to have constant revisions. Shunts can become blocked causing infection and can also malfunction causing a build up of cerebrospinal fluid. Shunts can also take too much cerebrospinal fluid causing low pressure headaches that can lead to a bleed in the brain.
If you have gotten this far, I thank you. I will totally have cute cake pictures for you later!
Friday, December 30, 2011
Acetazolamide
I realized today that I haven't really addressed what the treatment for IIH is. I should probably do that.
Due to the lack of research there isn't a drug that has been developed solely for IIH. So we take drugs that have been developed for other conditions and use them off label. The drug that seems to work the best is acetazolamide. The name brand, Diamox, has been discontinued and now only generics are available.
I was going to try and explain to you how acetazolamide works, but I do not understand any of the sciency words so what I will tell you about are the side effects. They stink.
Acetazolamide is used to treat a bunch of things, but I am pretty sure it was originally developed as a glaucoma drug. Thus far it has proven to be the most effective in lowering intracranial pressure. It has been shown to lower it anywhere from 5-57%. That may sound like a lot, but my OP (opening pressure) was around 60 so even if I am lowered 50% that doesn't get me to normal (under 18).
Acetazolamide contains sulfa, which I am technically allergic to. So when I first started taking it I had to be vigilant and watch for any rashes or anything. The hospital neuro said that as long as my reaction to sulfa drugs wasn't super severe then I would probably be fine and so far so good. Although yesterday I wore a tank top that had just been washed and it made me itchy. I was convinced that I was having an allergic reaction to acetazolamide, which my logical brain and AH told me wasn't likely as I have been taking it for a month but you can't always listen to the logical brain. Taking off the tank top and putting on some lotion seemed to take care of it though so I was ok.
You also can't take acetazolamide when pregnant or nursing, although IHRF is doing some studies right now to learn more about this. I know we are incredibly far from that at the moment (if ever - I am thinking adoption would be better for people with our genes) but it is something to think about. What do you do when you're preggos?
This has gotten extra long. I will tell you more about alternative treatments and surgical options at a later date.
On my personal front I had a pretty great day. Head feels pretty good and I rode my bike for half an hour today! My plan is to increase by five minutes each week and today I was gonna up it to 25 minutes but I felt so incredibly great that I just kept going. I did get pretty sweaty though.
Due to the lack of research there isn't a drug that has been developed solely for IIH. So we take drugs that have been developed for other conditions and use them off label. The drug that seems to work the best is acetazolamide. The name brand, Diamox, has been discontinued and now only generics are available.
I was going to try and explain to you how acetazolamide works, but I do not understand any of the sciency words so what I will tell you about are the side effects. They stink.
- numbness and tingling in the fingers and toes
- taste alteration (mostly carbonated drinks - the bastards)
- kidney stones (which I also get chronically - awesome))
- fatigue
- more frequent urination
- dehydration
- headaches
- blurry vision
Acetazolamide is used to treat a bunch of things, but I am pretty sure it was originally developed as a glaucoma drug. Thus far it has proven to be the most effective in lowering intracranial pressure. It has been shown to lower it anywhere from 5-57%. That may sound like a lot, but my OP (opening pressure) was around 60 so even if I am lowered 50% that doesn't get me to normal (under 18).
Acetazolamide contains sulfa, which I am technically allergic to. So when I first started taking it I had to be vigilant and watch for any rashes or anything. The hospital neuro said that as long as my reaction to sulfa drugs wasn't super severe then I would probably be fine and so far so good. Although yesterday I wore a tank top that had just been washed and it made me itchy. I was convinced that I was having an allergic reaction to acetazolamide, which my logical brain and AH told me wasn't likely as I have been taking it for a month but you can't always listen to the logical brain. Taking off the tank top and putting on some lotion seemed to take care of it though so I was ok.
You also can't take acetazolamide when pregnant or nursing, although IHRF is doing some studies right now to learn more about this. I know we are incredibly far from that at the moment (if ever - I am thinking adoption would be better for people with our genes) but it is something to think about. What do you do when you're preggos?
This has gotten extra long. I will tell you more about alternative treatments and surgical options at a later date.
On my personal front I had a pretty great day. Head feels pretty good and I rode my bike for half an hour today! My plan is to increase by five minutes each week and today I was gonna up it to 25 minutes but I felt so incredibly great that I just kept going. I did get pretty sweaty though.
Thursday, December 29, 2011
Lessons Learned
I have read that the worst part of this condition is that you look fine so people expect you to be fine and sometimes you are not.
I had a rough afternoon. Starting at about 4 and going until about 9 I had a headache and zero energy. It was frustrating. I was frustrated, Rob was frustrated, and Wills was frustrated because I didn't feel up to a carb binge. So I did what my body was telling me to. I didn't try and ride my bike, even though I felt like a lazy slob, I laid on the couch and watched reruns of my favorite prime time shows.
About halfway through The Office I realized that the headache was gone and the big head feeling was gone as well so you better believe I hopped on my bike and rode for my 20 minutes.
So, lesson learned. Take the opportunities when you can because this is a fickle condition. One minute you feel fine and the next your eyeballs feel like they're being pushed out of your skull. This might be difficult considering how much I love to procrastinate.
I had a rough afternoon. Starting at about 4 and going until about 9 I had a headache and zero energy. It was frustrating. I was frustrated, Rob was frustrated, and Wills was frustrated because I didn't feel up to a carb binge. So I did what my body was telling me to. I didn't try and ride my bike, even though I felt like a lazy slob, I laid on the couch and watched reruns of my favorite prime time shows.
About halfway through The Office I realized that the headache was gone and the big head feeling was gone as well so you better believe I hopped on my bike and rode for my 20 minutes.
So, lesson learned. Take the opportunities when you can because this is a fickle condition. One minute you feel fine and the next your eyeballs feel like they're being pushed out of your skull. This might be difficult considering how much I love to procrastinate.
Lemme See Your Lens Sack
One super cool thing I learned about yesterday was a fundus camera. This is the camera they used to take a picture of my optic disc. The terminology here has always confused me because some doctors were saying that it is my optic nerve that is swollen and some were saying it is my optic disc. What is the difference? Well, according to good old Wikipedia the optic disc is just the beginning of the optic nerve and actually the cause of the blind spot we all have. Since mine is enlarged my blind spot is larger.
One thing that wasn't shown in the picture I posted that I had in my own eye was some hemorrhaging from the excessive swelling.
Is it just me or does lens sack sound kind of dirty to anyone else?
I got these diagrams from this site. They also have a great glossary with all sorts of terms so you can learn about the parts of the eyes and whatnot.
As far as how I feel, kinda crappy today which is annoying because it is a bright sunny day. I have a big head and am incredibly tired. I woke up around 7:30 and then managed a two hour nap and am thinking about taking another one shortly. I need to get off my lazy butt and clean though because winter break is almost over and I have done no cleaning.
Wednesday, December 28, 2011
Your Nerves are Swollen
Look at this image on top. This is an optic nerve with moderate papilledema. This is kind of what my optic nerves look like.
Look at this optic nerve. It is normal. See the crisp edges around the egg looking thing there? That means it is normal. Mine do not look like this.
I went to the ophthalmologist today. He took pictures of my eyes and gave me a visual field test. Although my eyes are by no means back to normal he did not seen alarmed and seemed to think I was progressing pretty normally.
But wait, what is a visual field test? Well, it is awesome. You look into this dome thing and stare at a light in the center and click a clicker when you see a little light. It checks for blind spots in your peripheral vision. Although mine were a little bit larger that normal it was to be expected with the swelling I have. So nothing to be alarmed about.
All in all a pretty great appointment. He is faxing the visual field to my neuro as well as emailing the pictures of my optic nerves and the neuro will determine what to do next and how often I will have to see the eye doctor. It was all pretty cool.
Look at this optic nerve. It is normal. See the crisp edges around the egg looking thing there? That means it is normal. Mine do not look like this.
I went to the ophthalmologist today. He took pictures of my eyes and gave me a visual field test. Although my eyes are by no means back to normal he did not seen alarmed and seemed to think I was progressing pretty normally.
But wait, what is a visual field test? Well, it is awesome. You look into this dome thing and stare at a light in the center and click a clicker when you see a little light. It checks for blind spots in your peripheral vision. Although mine were a little bit larger that normal it was to be expected with the swelling I have. So nothing to be alarmed about.
All in all a pretty great appointment. He is faxing the visual field to my neuro as well as emailing the pictures of my optic nerves and the neuro will determine what to do next and how often I will have to see the eye doctor. It was all pretty cool.
Tuesday, December 27, 2011
Keith
If you are a girl and you want to watch a good movie you should watch Keith.
I am very proud of myself. I have ridden my bike for three days in a row. My legs are not nearly as sore.
I have had a big head all afternoon. Sometimes my head doesn't hurt, but it does feel like it is larger than normal. I call it big head syndrome.
I got my mom a very pretty birthday present from IHRF. It came with a letter about how much IH sucks. It focused on a family who's daughter was diagnosed. She wasn't diagnosed and wasn't diagnosed and then woke up one day and she couldn't see. She had to have an emergency optic nerve fenestration to save her sight. She didn't respond to the acetazolamide and had to have a shunt placed. She has already had 5 operations to repair the shunt. It could always be worse.
There are times when I am angry but I realize that it is counterproductive. It's hard to stay positive when you're pissed. I am trying to channel it into something positive. I am trying to turn my anger into energy and try to spread awareness and help the next person to come along with this stupid thing, but sometimes when my brain feels like it's pushing against my skull that's hard to do.
And then I watch a movie like Keith. And it puts everything into perspective because I will not die from this. I might lose my sight, but I will be alive. I was not given months. I was not told to get my affairs in order. I was told it is manageable. I was told there will be good days and bad days. I was told that everything will be ok. And really, that's a pretty awesome prognosis.
God, I love this movie.
I am very proud of myself. I have ridden my bike for three days in a row. My legs are not nearly as sore.
I have had a big head all afternoon. Sometimes my head doesn't hurt, but it does feel like it is larger than normal. I call it big head syndrome.
I got my mom a very pretty birthday present from IHRF. It came with a letter about how much IH sucks. It focused on a family who's daughter was diagnosed. She wasn't diagnosed and wasn't diagnosed and then woke up one day and she couldn't see. She had to have an emergency optic nerve fenestration to save her sight. She didn't respond to the acetazolamide and had to have a shunt placed. She has already had 5 operations to repair the shunt. It could always be worse.
There are times when I am angry but I realize that it is counterproductive. It's hard to stay positive when you're pissed. I am trying to channel it into something positive. I am trying to turn my anger into energy and try to spread awareness and help the next person to come along with this stupid thing, but sometimes when my brain feels like it's pushing against my skull that's hard to do.
And then I watch a movie like Keith. And it puts everything into perspective because I will not die from this. I might lose my sight, but I will be alive. I was not given months. I was not told to get my affairs in order. I was told it is manageable. I was told there will be good days and bad days. I was told that everything will be ok. And really, that's a pretty awesome prognosis.
God, I love this movie.
Monday, December 26, 2011
The farthest away
My husband pointed out today that this is the farthest day away from next Christmas. We both sighed in relief.
In other news, I ate a whole pepperoni pizza today. It was phenomenal.
I am in a lot of pain today, but strangely enough not from my head. It's this bike. I think it might kill me. My legs feel like two pieces of stone. I even had to use some Icey Hot patches. I am starting off this week with 20 minutes a day and hope to increase by 5 minutes each week until I get up to at least 40 minutes a day. Ugh. The thought of that makes me want to cry.
I see the ophthalmologist this week. I am rather excited.
In other news, I ate a whole pepperoni pizza today. It was phenomenal.
I am in a lot of pain today, but strangely enough not from my head. It's this bike. I think it might kill me. My legs feel like two pieces of stone. I even had to use some Icey Hot patches. I am starting off this week with 20 minutes a day and hope to increase by 5 minutes each week until I get up to at least 40 minutes a day. Ugh. The thought of that makes me want to cry.
I see the ophthalmologist this week. I am rather excited.
Sunday, December 25, 2011
Speed Racer
My eyes were craaaaazy in church today. I don't know what their deal was, but they were nuts. I think there was some blurriness in the left eye and it felt like it did before the double vision started so I was of course freaking out. I took a migraine pill (because I had a headache too) and just relaxed and in about 45 minutes it felt better.
Mom and my step dad made a great breakfast! They even sent home left overs. Yummos.
Now we just hang out until tonight when everyone comes over for Christmas. Luckily I don't have to do anything at all.
Rode my bike today. I used the bike computer my brother got me and I went 3.838 miles in 20 minutes. I burned 115 calories so I think I will have another go in a couple of hours. Get ready for the holiday feast.
Merry Christmas!
Mom and my step dad made a great breakfast! They even sent home left overs. Yummos.
Now we just hang out until tonight when everyone comes over for Christmas. Luckily I don't have to do anything at all.
Rode my bike today. I used the bike computer my brother got me and I went 3.838 miles in 20 minutes. I burned 115 calories so I think I will have another go in a couple of hours. Get ready for the holiday feast.
Merry Christmas!
Saturday, December 24, 2011
Christmas Eve
Hohoho!I am sleeeeeepy. Christmas Eve dinner went off without a hitch and my headache didn't really take hold until everyone was getting ready to leave. So all in all it couldn't have gone much better.
I got some awesome stuff off of my wishlist from my father in law and his girlfriend as well as some cute things not on my wishlist. I am excited about tomorrow. My mom and step dad are making us breakfast and we'll go to church with them and then we will come back home and the mother in law will make us dinner.
We always get my niece at least two gifts so she has one to open on Christmas Eve and one to open on Christmas. So I present to you, the world's cutest Bears fan. Now we just have to teach her the words to Bear Down Chicago Bears.
Friday, December 23, 2011
Christmas Success!
I got my brother the best Christmas present ever.
Cerebrospinal fluid.
My brother expressed interest in acquiring some, but the doctor said that it was unsanitary or some other such nonsense. After the second tap I mentioned it again in a joking way and he gave me a urine cup with some fluid in it! Since they had tested the first batch and I wasn't diseased he gave it to me. They even gave me a bio-hazard bag to put it in.
He just got it today so I can FINALLY talk about it.
We are HORRIBLE at keeping secrets about presents in our family so this one was especially hard because I knew he would think it was so cool. And he did. Although he thought it was fake because it just looks like water. But it was real! Straight out of the lumbar puncture.
Today was busy! I made 44 cupcakes, three dozen cookies, sweet potato crunch, stuffing, cranberry sauce, coleslaw, and fruit salad. Tomorrow I just have to bake the crunch and the stuffing, make the taters, heat up the gravy, make the rolls, and cook the turkey.
Cerebrospinal fluid.
My brother expressed interest in acquiring some, but the doctor said that it was unsanitary or some other such nonsense. After the second tap I mentioned it again in a joking way and he gave me a urine cup with some fluid in it! Since they had tested the first batch and I wasn't diseased he gave it to me. They even gave me a bio-hazard bag to put it in.
He just got it today so I can FINALLY talk about it.
We are HORRIBLE at keeping secrets about presents in our family so this one was especially hard because I knew he would think it was so cool. And he did. Although he thought it was fake because it just looks like water. But it was real! Straight out of the lumbar puncture.
Today was busy! I made 44 cupcakes, three dozen cookies, sweet potato crunch, stuffing, cranberry sauce, coleslaw, and fruit salad. Tomorrow I just have to bake the crunch and the stuffing, make the taters, heat up the gravy, make the rolls, and cook the turkey.
Y U No Research?
I finally found an organization! Better yet, a research foundation! Sadly no one seems to be doing much research.
Ok, I take that back, they are doing some.
I just don't understand why no one wants to find out why this happens. Everything I read talks about how PTC is rare and blah blah blah but it effects 1 in every 100,000 people. So how rare can it be? Still, no one seems to CARE about it. Some Dr.'s don't even know about it.
The Willsters and I are talking about planning a walk to benefit the IHRF. Maybe I will meet others with PTC and we can talk about how much it sucks.
One useful tidbit, the website said that my new found hatred of soda was from the Diamox. They said it would happen with ALL carbonated beverages. Does this mean no champagne on New Years? Travesty.
http://www.ihrfoundation.org/ There's the foundation. You should donate. They also have some cute stuff in their shop. Even little doggie shirts! They use the real name (Intracranial Hypertension) so their slogan is I Hope which I think is cute.
http://www.columbian.com/news/2010/jan/10/vancouver-family-combats-rare-hypertension/ That is a link to a very interesting article about how much this shit sucks. It was actually written by the people who started the registry.
Ok, I take that back, they are doing some.
I just don't understand why no one wants to find out why this happens. Everything I read talks about how PTC is rare and blah blah blah but it effects 1 in every 100,000 people. So how rare can it be? Still, no one seems to CARE about it. Some Dr.'s don't even know about it.
The Willsters and I are talking about planning a walk to benefit the IHRF. Maybe I will meet others with PTC and we can talk about how much it sucks.
One useful tidbit, the website said that my new found hatred of soda was from the Diamox. They said it would happen with ALL carbonated beverages. Does this mean no champagne on New Years? Travesty.
http://www.ihrfoundation.org/ There's the foundation. You should donate. They also have some cute stuff in their shop. Even little doggie shirts! They use the real name (Intracranial Hypertension) so their slogan is I Hope which I think is cute.
http://www.columbian.com/news/2010/jan/10/vancouver-family-combats-rare-hypertension/ That is a link to a very interesting article about how much this shit sucks. It was actually written by the people who started the registry.
Thursday, December 22, 2011
A MOTIVATOR MIRACLE!
I got my bike stand! My bike stand that was not supposed to come until January 4th arrived TODAY and it is PERFECT. I have it all set up with the bike inside and I was biking while reading today.
Also, I am drinking a soda and it actually tastes ok. Not great, but ok enough to maybe start drinking one every morning again. I have to chug it to get past the flavor, but at least I am getting the caffeine I crave.
I declare my slump officially over.
Also, I am drinking a soda and it actually tastes ok. Not great, but ok enough to maybe start drinking one every morning again. I have to chug it to get past the flavor, but at least I am getting the caffeine I crave.
I declare my slump officially over.
Oh Christmas
I am not at all in the spirit this year.
We just got done with our shopping. We had the nicest cashier. She told me I was smart.
We are lucky to only have one child in our family. Our adorable little niece. And adorable she is. She looooooves to play the piano over at Grandma's so we bought her a little cat keyboard. It is probably a little old for her, but for now she can just bang away on the keys and in the future she can record and use the preprogrammed settings and all that fun stuff. There is even a cat setting so it meows when you press a key. My brother in law hates cats. It is also loud, which is a requirement for anything we buy her. We try to troll her parents with our gifts for her.
Feeling ok today. I got some baking done this morning. I should have done more, but I didn't. I also need to get to work and start making everything for Saturday. I have no clue what I am going to make for dessert. I better get on that. I just have no energy these past few days. The weather is terrible, cloudy and depressing, so I haven't been able to ride my bike. I wish I had just sucked it up and spent the extra on two day shipping, but I was thinking I would be thrifty with the gift card. Now I have to wait until maybe after January 1st. Bleck.
I keep waiting to wake up one morning and have all of this be gone. I keep waking up and remembering that it won't.
We just got done with our shopping. We had the nicest cashier. She told me I was smart.
We are lucky to only have one child in our family. Our adorable little niece. And adorable she is. She looooooves to play the piano over at Grandma's so we bought her a little cat keyboard. It is probably a little old for her, but for now she can just bang away on the keys and in the future she can record and use the preprogrammed settings and all that fun stuff. There is even a cat setting so it meows when you press a key. My brother in law hates cats. It is also loud, which is a requirement for anything we buy her. We try to troll her parents with our gifts for her.
Feeling ok today. I got some baking done this morning. I should have done more, but I didn't. I also need to get to work and start making everything for Saturday. I have no clue what I am going to make for dessert. I better get on that. I just have no energy these past few days. The weather is terrible, cloudy and depressing, so I haven't been able to ride my bike. I wish I had just sucked it up and spent the extra on two day shipping, but I was thinking I would be thrifty with the gift card. Now I have to wait until maybe after January 1st. Bleck.
I keep waiting to wake up one morning and have all of this be gone. I keep waking up and remembering that it won't.
Wednesday, December 21, 2011
Cooking Marathon
Today marks the beginning of a cooking marathon. I have two somewhat large orders plus I am doing Christmas Eve dinner for my husband's family. I also have to do all of my Christmas shopping.
PTC can fuck off for about 4 days because I just don't have time for it. Have a headache? Shut up, rub some dirt on it, and walk it off (as my brother would say).
The most annoying part of this medicine is that my feet fall asleep constantly. One is asleep right now. It is these mini pins and needles that make me want to chop it off. It's not like normal falling asleepness where you can wake it up by banging it around. It goes away when it feels like it. I always wake AH up and tell him about it. I don't think he cares, but I feel as if someone should know.
PTC can fuck off for about 4 days because I just don't have time for it. Have a headache? Shut up, rub some dirt on it, and walk it off (as my brother would say).
The most annoying part of this medicine is that my feet fall asleep constantly. One is asleep right now. It is these mini pins and needles that make me want to chop it off. It's not like normal falling asleepness where you can wake it up by banging it around. It goes away when it feels like it. I always wake AH up and tell him about it. I don't think he cares, but I feel as if someone should know.
Tuesday, December 20, 2011
Rain, Rain, Go Away
My pressure is high right now. My eyes are being funny and my head hurts. I am watching and waiting. It is not double vision but they feel tired. Tired and like they can't exactly focus. I am now excited to see the ophthalmologist on the 28th although I am convinced he is going to tell me that I am going to go blind in a week.
I wish there was a meter but alas there is not. It makes it difficult to know when to worry. Since all of this is so new I don't know what to be nervous about and what is my normal. You can read online about other people's normal but everyone is different so their normal is not your normal.
The weirdest part about this whole eye thing is that you can actually feel which disc is swollen. Like right now I can tell that it is really my left eye that is giving me problems. When I had the double vision I could feel whether it was my right or my left eye that was the main culprit.
On the upbeat front, I got a bike trainer today! Now I will be able to ride my bike indoors. This is awesome. I am also on a quest for pink sparkly shoes on amazon as my dad got us a rather generous gift card there. I say us, but AH is being kind and letting me use the whole thing. Do you have any idea how difficult it is to find pink sparkly shoes for an adult. I guess the manufacturers are trying to tell me something.
<3
I wish there was a meter but alas there is not. It makes it difficult to know when to worry. Since all of this is so new I don't know what to be nervous about and what is my normal. You can read online about other people's normal but everyone is different so their normal is not your normal.
The weirdest part about this whole eye thing is that you can actually feel which disc is swollen. Like right now I can tell that it is really my left eye that is giving me problems. When I had the double vision I could feel whether it was my right or my left eye that was the main culprit.
On the upbeat front, I got a bike trainer today! Now I will be able to ride my bike indoors. This is awesome. I am also on a quest for pink sparkly shoes on amazon as my dad got us a rather generous gift card there. I say us, but AH is being kind and letting me use the whole thing. Do you have any idea how difficult it is to find pink sparkly shoes for an adult. I guess the manufacturers are trying to tell me something.
<3
Monday, December 19, 2011
Cupcakes!
The Daily Headache
Today has been pretty great thus far. I made mom some peppermint hot chocolate cupcakes for a birthday party at work and everything went off without a hitch.
I went for a bike ride down to a pond near my house and I was able to sit with the sun on my face and listen to the water. It was glorious. I did have to walk my bike up a steep hill, but that's ok with me. It all burns calories. I took a meandering ride after that and it was so nice to be out in the sunshine!
But the absolute best part of today (besides the scalloped potatoes) is that I have had a headache all day. I went to bed with a migraine last night. I ended up having to take two pills at once. That is actually the suggested dosage, but I usually only have to take one. When I woke up I had a very mild headache. If I were working I would have taken a pill right away because the last thing I want is a migraine at work, but since I am off and with really nothing to do after baking those cupcakes I figure I would see what happened. Nothing! I was able to get everything done and the only thing that held me back were my sore legs from my bike ride yesterday. Woohoo!
I went for a bike ride down to a pond near my house and I was able to sit with the sun on my face and listen to the water. It was glorious. I did have to walk my bike up a steep hill, but that's ok with me. It all burns calories. I took a meandering ride after that and it was so nice to be out in the sunshine!
But the absolute best part of today (besides the scalloped potatoes) is that I have had a headache all day. I went to bed with a migraine last night. I ended up having to take two pills at once. That is actually the suggested dosage, but I usually only have to take one. When I woke up I had a very mild headache. If I were working I would have taken a pill right away because the last thing I want is a migraine at work, but since I am off and with really nothing to do after baking those cupcakes I figure I would see what happened. Nothing! I was able to get everything done and the only thing that held me back were my sore legs from my bike ride yesterday. Woohoo!
Sunday, December 18, 2011
Strangemedicalmaladies.com
Today is Sunday. Today is Bears football. Today is cheesy nachos from Taco Bell. Today is doing nothing. Today is riding my bike. Today is glorious.
Today is not worrying about my silly head and what might be inside of it. Today is not worrying about whether I will lose my sight. Today is not baking (not even one chocolate chip cookie). Today is nothing stressful.
I'll worry about all of that another day.
Happy Sunday! : )
Today is not worrying about my silly head and what might be inside of it. Today is not worrying about whether I will lose my sight. Today is not baking (not even one chocolate chip cookie). Today is nothing stressful.
I'll worry about all of that another day.
Happy Sunday! : )
Saturday, December 17, 2011
Change can be Terrible
There are many things that have changed since I was diagnosed with PTC. Most of them are not awesome.
1. I am tired. This is getting better. I have been an early to bed kind of girl since college but now 9 pm hits and I just want my shower and my sleep. There is really no other option. Waking up is interesting though. I remember waking up prior to PTC and just dragging through my morning. I never really felt like sleep was restful. That has changed as well. I wake up feeling so much more rested.
2. I can barely remember my own name. I feel like my brain is working slower. Like my thoughts are moving in slow motion. I space out more as well. I have a theory. Cerebrospinal fluid gives the brain nutrients. My brain was getting extra nutrients which made it smarter. Now those nutrients have been taken away so I am dumber. I must ask my neurologist about this.
3. AH and I aren't communicating as well. This is the most depressing part of the whole thing. He has a lot going on right now as well, but I feel like he doesn't really understand how I feel. On the flip side I am not making as much of an effort to understand how he feels. This really sucks as he is my absolute best friend and normally can read me so well
4. I cannot drink soda. This is a tragedy.
I guess I should make a list of positives as well. Keep things balanced. Four positive things in my life...
1. I have the best friends and family anyone could ask for. I have been showered with love and concern since this whole thing started and my support system is amazing. I am incredibly lucky.
2. I can still work. The migraine medicine and I get along really well and I am able to take it at work and still function incredibly well.
3. I am taking less and less migraine meds as the days wear on and the Diamox works to stabalize my pressure. This is excellent news.
4. I am learning to read my body. I am starting to understand what it feels like when my pressure gets high. There really isn't anything I can do about it, but at least I can kind of track what is going on with the weather, time of day, etc.
5. It was way easier to come up with the positives than it was the negatives. <3
1. I am tired. This is getting better. I have been an early to bed kind of girl since college but now 9 pm hits and I just want my shower and my sleep. There is really no other option. Waking up is interesting though. I remember waking up prior to PTC and just dragging through my morning. I never really felt like sleep was restful. That has changed as well. I wake up feeling so much more rested.
2. I can barely remember my own name. I feel like my brain is working slower. Like my thoughts are moving in slow motion. I space out more as well. I have a theory. Cerebrospinal fluid gives the brain nutrients. My brain was getting extra nutrients which made it smarter. Now those nutrients have been taken away so I am dumber. I must ask my neurologist about this.
3. AH and I aren't communicating as well. This is the most depressing part of the whole thing. He has a lot going on right now as well, but I feel like he doesn't really understand how I feel. On the flip side I am not making as much of an effort to understand how he feels. This really sucks as he is my absolute best friend and normally can read me so well
4. I cannot drink soda. This is a tragedy.
I guess I should make a list of positives as well. Keep things balanced. Four positive things in my life...
1. I have the best friends and family anyone could ask for. I have been showered with love and concern since this whole thing started and my support system is amazing. I am incredibly lucky.
2. I can still work. The migraine medicine and I get along really well and I am able to take it at work and still function incredibly well.
3. I am taking less and less migraine meds as the days wear on and the Diamox works to stabalize my pressure. This is excellent news.
4. I am learning to read my body. I am starting to understand what it feels like when my pressure gets high. There really isn't anything I can do about it, but at least I can kind of track what is going on with the weather, time of day, etc.
5. It was way easier to come up with the positives than it was the negatives. <3
Aaaaaachooooo
Well, it is not even 10 and I have already made dozens of little peanut butter and white chocolate candies. Although they are by no means beautiful they are incredibly tasty! I have to run to the store and then I think I am going to make some bird's nests and haystacks as well as some homemade caramel. I have to get a pretty tin as well because these are a gift that my mom is giving to her neighbors for Christmas. Kadybug the Baker's no bake Christmas package.
I was excited to wake up to snow this morning! I was not so excited to wake up to the neighbor's dog barking. I try not to get annoyed about barking dogs because I have two, but I don't tie mine out at 7 am and let them bark away while I am out sweeping snow. Add that to the city's plow trucks getting ready to get their day underway and sleeping past 7 really wasn't an option for me.
Head feels good today but I think I am getting a cold. I am a little nervous about having excess cerebrospinal fluid as well as excess snot all gathering in the same general area. Still, nothing feels better than a good sneeze.
I better get this non baking going. I am going out with mom around 4 so I want to have it all done by then.
I was excited to wake up to snow this morning! I was not so excited to wake up to the neighbor's dog barking. I try not to get annoyed about barking dogs because I have two, but I don't tie mine out at 7 am and let them bark away while I am out sweeping snow. Add that to the city's plow trucks getting ready to get their day underway and sleeping past 7 really wasn't an option for me.
Head feels good today but I think I am getting a cold. I am a little nervous about having excess cerebrospinal fluid as well as excess snot all gathering in the same general area. Still, nothing feels better than a good sneeze.
I better get this non baking going. I am going out with mom around 4 so I want to have it all done by then.
Friday, December 16, 2011
Rum Punch
I had a glass of rum punch tonight. I didn't eat so it hit me pretty hard. I am not sure if my headache is due to the rum or the lateness of my pill taking.
I am in a slump. It has been evident since this all started that things are really not going my way. Little things as well as big things. We got a flat tire, the battery died on the other car, Rob keeps getting crazy low blood sugars. Everything just feels like it is against me. The only time I feel somewhat normal is when I go out. When I am with other people I don't feel like crazy head girl with shit going wrong every day. I feel like the old me. So this Rum Punch party was pretty much awesome. There was a bad moment when I couldn't get a hold of Rob and he was late so I was convinced he was low and passed out in his chair (true), but I decided I wasn't going to worry and could totally catch a ride with the girl who lives in the next town over. And low and behold, my mom was able to get a hold of Rob for me and everything worked out.
I think that is what I need to start working on. I need to learn to let the control go. Just live a little. If everything doesn't happen on my exact time schedule that is ok. I don't have to do everything. I just don't have the energy to be Superwoman anymore.
For the first few days after my diagnosis I refused to let anything change. I went back to work too soon, baked a whole mess of cookies, and just tried to keep every single one of my commitments. I just wasn't ready to let it win yet. I think I am finally ready to let this stupid thing win sometimes and that is more than ok. I have to realize that while I am absolutely committed to living a normal life there will be times where I just have to lay on the couch and sleep the headache away and that is ok. It is not a sign of weakness.
Rum and I have never really gotten along.
I am in a slump. It has been evident since this all started that things are really not going my way. Little things as well as big things. We got a flat tire, the battery died on the other car, Rob keeps getting crazy low blood sugars. Everything just feels like it is against me. The only time I feel somewhat normal is when I go out. When I am with other people I don't feel like crazy head girl with shit going wrong every day. I feel like the old me. So this Rum Punch party was pretty much awesome. There was a bad moment when I couldn't get a hold of Rob and he was late so I was convinced he was low and passed out in his chair (true), but I decided I wasn't going to worry and could totally catch a ride with the girl who lives in the next town over. And low and behold, my mom was able to get a hold of Rob for me and everything worked out.
I think that is what I need to start working on. I need to learn to let the control go. Just live a little. If everything doesn't happen on my exact time schedule that is ok. I don't have to do everything. I just don't have the energy to be Superwoman anymore.
For the first few days after my diagnosis I refused to let anything change. I went back to work too soon, baked a whole mess of cookies, and just tried to keep every single one of my commitments. I just wasn't ready to let it win yet. I think I am finally ready to let this stupid thing win sometimes and that is more than ok. I have to realize that while I am absolutely committed to living a normal life there will be times where I just have to lay on the couch and sleep the headache away and that is ok. It is not a sign of weakness.
Rum and I have never really gotten along.
Thursday, December 15, 2011
Double Post Day!
Oh man. I just sat down for the first time all day. Weeooo. I am not even making half of what I planned due to forgotten ingredients and a serious lack of motivation. Although I am not done yet, I am in the home stretch and I have a little bit of time to put my feet up.
The cake is super cool though. 7 layers of super thin cake all separated by frosting and caramel on the top. Mmmmmmm.
The librarian at school recommended a book to me. It is called Out of My Mind by Sharon M. Draper. It is about a girl who has severe CP. She can't eat on her own, talk, walk, and can only move her arms and hands slightly. Since she can't communicate no one knows how smart she is, but it just so happens that she has a photographic memory. She has been doing the same preschool level curriculum her whole life because she can't communicate. Yet another example of how it could totally be worse as well as a stark reminder to treat everyone like a person. You don't know what complicated thoughts and feelings are going on in their heads.
Tomorrow is the last day of school before break and I am pretty much the most excited person on the planet. I have a ton of baking to do, but otherwise I plan on cleaning my house and relaxing. I will nap. I will nap copious amounts.
On the PTC front pretty good day over all. I have been achy across my shoulders, but I did sleep on the couch last night to keep my head a bit elevated so that might have something to do with it. A more comfortable lazy boy might need to be in my future.
<3
The cake is super cool though. 7 layers of super thin cake all separated by frosting and caramel on the top. Mmmmmmm.
The librarian at school recommended a book to me. It is called Out of My Mind by Sharon M. Draper. It is about a girl who has severe CP. She can't eat on her own, talk, walk, and can only move her arms and hands slightly. Since she can't communicate no one knows how smart she is, but it just so happens that she has a photographic memory. She has been doing the same preschool level curriculum her whole life because she can't communicate. Yet another example of how it could totally be worse as well as a stark reminder to treat everyone like a person. You don't know what complicated thoughts and feelings are going on in their heads.
Tomorrow is the last day of school before break and I am pretty much the most excited person on the planet. I have a ton of baking to do, but otherwise I plan on cleaning my house and relaxing. I will nap. I will nap copious amounts.
On the PTC front pretty good day over all. I have been achy across my shoulders, but I did sleep on the couch last night to keep my head a bit elevated so that might have something to do with it. A more comfortable lazy boy might need to be in my future.
<3
It is too early to blog!
Oh man. It's only 6:41. I haven't even had breakfast.
I would like to blame PTC for my lack of progress on my holiday baking but alas, I cannot. I can only blame my lack of motivation. I have absolutely zero holiday spirit and am now in a position where I need to make a cake (paid gig YAY!) as well as Christmas presents for everyone at school. Well shoot.
On the bright side my lovely and amazing husband is going to the store for me today while I am at work so I can get right down to business. I have a feeling it is going to be a late one.
On the brighter side the Stinker's family gave me a very generous Christmas gift so all baking will be free today.
In PTC news I am now a walking barometer. I woke up this morning feeling faaaaaaar better than I did yesterday and when I checked the barometric pressure, 29 and climbing. It is actually kind of funny because when Rob's grandmother passed away we somehow managed to become the repository for all of her barometers. Every time someone would find one at the house they would pass it along to us and now we don't even need them!
I haven't woken AH (short for Amazing Husband) up yet. I am a little nervous about what he might say to me this morning.
And today. Today is sweatpants day. All must be right with the world!
I would like to blame PTC for my lack of progress on my holiday baking but alas, I cannot. I can only blame my lack of motivation. I have absolutely zero holiday spirit and am now in a position where I need to make a cake (paid gig YAY!) as well as Christmas presents for everyone at school. Well shoot.
On the bright side my lovely and amazing husband is going to the store for me today while I am at work so I can get right down to business. I have a feeling it is going to be a late one.
On the brighter side the Stinker's family gave me a very generous Christmas gift so all baking will be free today.
In PTC news I am now a walking barometer. I woke up this morning feeling faaaaaaar better than I did yesterday and when I checked the barometric pressure, 29 and climbing. It is actually kind of funny because when Rob's grandmother passed away we somehow managed to become the repository for all of her barometers. Every time someone would find one at the house they would pass it along to us and now we don't even need them!
I haven't woken AH (short for Amazing Husband) up yet. I am a little nervous about what he might say to me this morning.
And today. Today is sweatpants day. All must be right with the world!
Wednesday, December 14, 2011
Insane in the BRAIN!
Today was completely and totally insane.
Insane.
I woke up with a floater which my ER neuro said was hospital worthy and my real neuro didn't mention. It had pretty much cleared up after my shower but I wanted to be sure I had minutes on my phone in case anything funky started going on. So I go to wake up my lovely husband to see which account I need to use and he starts rambling on about how someone at his dentist office has been murdered and he needs to call them so he can solve the murder. He was quite concerned about the paperwork associated with the murder. He seemed to think it was going to be a nightmare.
We had an ugly sweater contest at work today and while I didn't participate because I was unable to find one to borrow I did get to see some hideous creations. It was pretty awesome because it is the only day of the year that you can compliment someone on how horrible they look.
The rain caused some rather heinous headaches today and I was incredibly grateful for my migraine meds.
Oh, and I left the radio on in my car all afternoon and came out to a dead battery. That was special.
Something a little uplifting. I went to church with my mom and step dad and that was nice. They do an Advent dinner on Wednesdays and then a service. Although I am not the most religious person I felt the need to head to the big man's house and thank him for sparing my sight and the fact that it wasn't a tumor. I also wanted to thank my mom's church friends who have been so concerned about me over the past few weeks. There was also baked mostaccioli there. Spell check wants to change that to mustachioed. I might be able to support this.
Did I mention I wore my fuzzy clogs and my feet were wet all day?
Tomorrow is sweatpants day. I am going one better on the scale of laziness and wearing a pair of my husband's. I am pretty excited. I am also going to wear the Patch shirt that my Willie brought over for me. It will be delightful. I will not wear furry clogs. It is supposed to be clear tomorrow. I am thinking a bike ride is in my future.
<3
Insane.
I woke up with a floater which my ER neuro said was hospital worthy and my real neuro didn't mention. It had pretty much cleared up after my shower but I wanted to be sure I had minutes on my phone in case anything funky started going on. So I go to wake up my lovely husband to see which account I need to use and he starts rambling on about how someone at his dentist office has been murdered and he needs to call them so he can solve the murder. He was quite concerned about the paperwork associated with the murder. He seemed to think it was going to be a nightmare.
We had an ugly sweater contest at work today and while I didn't participate because I was unable to find one to borrow I did get to see some hideous creations. It was pretty awesome because it is the only day of the year that you can compliment someone on how horrible they look.
The rain caused some rather heinous headaches today and I was incredibly grateful for my migraine meds.
Oh, and I left the radio on in my car all afternoon and came out to a dead battery. That was special.
Something a little uplifting. I went to church with my mom and step dad and that was nice. They do an Advent dinner on Wednesdays and then a service. Although I am not the most religious person I felt the need to head to the big man's house and thank him for sparing my sight and the fact that it wasn't a tumor. I also wanted to thank my mom's church friends who have been so concerned about me over the past few weeks. There was also baked mostaccioli there. Spell check wants to change that to mustachioed. I might be able to support this.
Did I mention I wore my fuzzy clogs and my feet were wet all day?
Tomorrow is sweatpants day. I am going one better on the scale of laziness and wearing a pair of my husband's. I am pretty excited. I am also going to wear the Patch shirt that my Willie brought over for me. It will be delightful. I will not wear furry clogs. It is supposed to be clear tomorrow. I am thinking a bike ride is in my future.
<3
Tuesday, December 13, 2011
Losing Control
I think this is the worst part of PTC. There is no reason. There are conditions that people who get PTC seem to have and apparently obese people are more prone (which is a total confidence booster let me tell you) but there really isn't a reason why your brain decides to do this so there really isn't anything you can do to prevent it.
I think this has been the hardest part for me, realizing that the medicine I am taking won't "cure" me because there is no cure. It is strictly maintenance and if I stop taking it the symptoms will come back. I have no control. I know there are so many people dealing with things like diabetes who have had to face this reality, but I haven't had to face it before and it has been a little daunting.
My neuro told me that PTC can go into remission and that fact actually frightened me. How do you know? How do you tell the difference between remission and the meds working? And when we decide it's remission apparently I just go off of the meds and wait for symptoms to appear. Uuuuh, that doesn't really sound appealing to me. I will deal with the tingly hands and feet and the hatred of soda if it means that the double vision and blind spots won't come back. Again, the lack of control. I don't really do well with that.
We had a cloudy afternoon. It was almost misty. That didn't do anything for my state of mind. I had to take a migraine pill for the first time in a while and it just made me feel like I was moving in sloooooow motion. Luckily the Stinker leaves early on Tuesdays and there aren't really any pressing projects this close to winter break. Thank goodness for a quiet afternoon.
This is not a very uplifting entry.
I guess the silver lining is even though I had what I would consider a "bad" afternoon it was still manageable. I still got done what I needed to get done.
Only three days until winter break and I don't have to wear real pants for a single one of them.
I think this has been the hardest part for me, realizing that the medicine I am taking won't "cure" me because there is no cure. It is strictly maintenance and if I stop taking it the symptoms will come back. I have no control. I know there are so many people dealing with things like diabetes who have had to face this reality, but I haven't had to face it before and it has been a little daunting.
My neuro told me that PTC can go into remission and that fact actually frightened me. How do you know? How do you tell the difference between remission and the meds working? And when we decide it's remission apparently I just go off of the meds and wait for symptoms to appear. Uuuuh, that doesn't really sound appealing to me. I will deal with the tingly hands and feet and the hatred of soda if it means that the double vision and blind spots won't come back. Again, the lack of control. I don't really do well with that.
We had a cloudy afternoon. It was almost misty. That didn't do anything for my state of mind. I had to take a migraine pill for the first time in a while and it just made me feel like I was moving in sloooooow motion. Luckily the Stinker leaves early on Tuesdays and there aren't really any pressing projects this close to winter break. Thank goodness for a quiet afternoon.
This is not a very uplifting entry.
I guess the silver lining is even though I had what I would consider a "bad" afternoon it was still manageable. I still got done what I needed to get done.
Only three days until winter break and I don't have to wear real pants for a single one of them.
Monday, December 12, 2011
Oh Noes... I have PTC
I was diagnosed with Pseudotumor Cerebri (Idiopathic Intracranial Hypertension is it's newer name) on November 29th of 2011. I started to experience double vision on the 26th but was told by the urgent care doctor that it was probably an ocular migraine and would most likely go away. When it didn't I called my primary who referred me to an ophthalmologist who I saw immediately. Both of my optic discs were swollen (papilledema) and she sent me down to the ER.
Luckily for me she called my primary prior to sending me and he is amazing and wonderful and had a neurologist waiting for me in the ER. After doing a neuro exam he explained that I would have an MRI which would most likely come back clear because I probably had something called Pseudotumor Cerebri. PTC is when your brain doesn't effectively absorb the cerebrospinal fluid it makes.
Everyone's body makes cerebrospinal fluid. It surrounds our brain and spine and does all sorts of great things. It gives us nutrients, takes away waste, and protects those important things from injury. Normal people are constantly making and absorbing this stuff, I on the other hand just continually make it. I am special, but not in a good way.
Once my MRI did in fact come back showing only insane amounts of fluid in my brain we got prepped for the spinal tap. Oh, did I not mention that? There are two indicators of PTC, papilledema and increased pressure during a spinal tap. Awesome. A spinal tap is also a way to relieve the elevated pressure. They do the tap and my pressure is off the charts. Their little gauge goes up to 55 and my pressure is over 60 (we had to do some math). When he was done it felt like my head was actually lighter. Below is a picture of spinal tap number 1.
So he sent us on our way with a prescription for some meds to keep my pressure low. Here I am thinking that this all done now. I take these pills and everything will be ok. How wrong I am.
Two days later I was back in the hospital with the worst headache I had ever experienced. They admitted me, gave me a CT because they were afraid I had bleed in my brain (I didn't) and then did another LP (lumbar puncture - aka spinal tap). My pressure was already up to 40. That was when I realized that this wasn't something that was just going to go away. I was sent home the next day armed with migraine pills and a much more somber outlook on things. And below is spinal tap number two. That little tube is hooked up to the needle in my back and then the long thing he is holding is the gauge.
I started researching online. Everything I read that had been posted by people with PTC was horrifying. They couldn't work, they were getting headaches everyday, they had been shunted and were still in horrible discomfort. I was petrified. In addition to that were the people complaining about the Diamox (the medicine used to keep pressure under control). It makes you tired, your feet and hands tingle all the time, it is impossible to function while on it. I mean, I understand that everyone has bad days but it seemed like these people lived bad days.
So I started making a list. Things I could do with PTC and things I couldn't do with PTC. At first there were only two things on my list... bake 8 dozen cookies and stand in my kitchen and cry but they were both on the CAN side so I was heartened. So far, my can't side only has three things on it, drink soda (side effect of the meds), sleep in bed (this has actually been moved to the CAN side), and head bang.
So I guess what I'm trying to say is the point of this blog is to prove that it IS possible to live a normal life with PTC. I know it has only been twoish weeks but things are already starting to get better. I have a nearly full bottle of migraine meds to prove it. For me, the Diamox is working and although I get home from work and pretty much want to conk out at night even that is getting better.
So, let's get this shit managed I guess... : )
Luckily for me she called my primary prior to sending me and he is amazing and wonderful and had a neurologist waiting for me in the ER. After doing a neuro exam he explained that I would have an MRI which would most likely come back clear because I probably had something called Pseudotumor Cerebri. PTC is when your brain doesn't effectively absorb the cerebrospinal fluid it makes.
Everyone's body makes cerebrospinal fluid. It surrounds our brain and spine and does all sorts of great things. It gives us nutrients, takes away waste, and protects those important things from injury. Normal people are constantly making and absorbing this stuff, I on the other hand just continually make it. I am special, but not in a good way.
Once my MRI did in fact come back showing only insane amounts of fluid in my brain we got prepped for the spinal tap. Oh, did I not mention that? There are two indicators of PTC, papilledema and increased pressure during a spinal tap. Awesome. A spinal tap is also a way to relieve the elevated pressure. They do the tap and my pressure is off the charts. Their little gauge goes up to 55 and my pressure is over 60 (we had to do some math). When he was done it felt like my head was actually lighter. Below is a picture of spinal tap number 1.
Two days later I was back in the hospital with the worst headache I had ever experienced. They admitted me, gave me a CT because they were afraid I had bleed in my brain (I didn't) and then did another LP (lumbar puncture - aka spinal tap). My pressure was already up to 40. That was when I realized that this wasn't something that was just going to go away. I was sent home the next day armed with migraine pills and a much more somber outlook on things. And below is spinal tap number two. That little tube is hooked up to the needle in my back and then the long thing he is holding is the gauge.
I started researching online. Everything I read that had been posted by people with PTC was horrifying. They couldn't work, they were getting headaches everyday, they had been shunted and were still in horrible discomfort. I was petrified. In addition to that were the people complaining about the Diamox (the medicine used to keep pressure under control). It makes you tired, your feet and hands tingle all the time, it is impossible to function while on it. I mean, I understand that everyone has bad days but it seemed like these people lived bad days.
So I started making a list. Things I could do with PTC and things I couldn't do with PTC. At first there were only two things on my list... bake 8 dozen cookies and stand in my kitchen and cry but they were both on the CAN side so I was heartened. So far, my can't side only has three things on it, drink soda (side effect of the meds), sleep in bed (this has actually been moved to the CAN side), and head bang.
So I guess what I'm trying to say is the point of this blog is to prove that it IS possible to live a normal life with PTC. I know it has only been twoish weeks but things are already starting to get better. I have a nearly full bottle of migraine meds to prove it. For me, the Diamox is working and although I get home from work and pretty much want to conk out at night even that is getting better.
So, let's get this shit managed I guess... : )
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