Mar 30, 2010

It's Not What I Can See, It's WHERE

So a quick update about my visit to the neuro-ophthalmologist yesterday, because my eyes are still killing me tonight and I really just want to sleep it off.

I met with Dr. Harrington at TOPROSA and the first order of business was a field vision test, which is standard procedure. Basically you stare at a tiny dot and click a button every time you see a flash of light. When I realized I wasn't clicking very often I figured that I was in trouble, especially when I seemed to be clicking a lot more for the left eye. Back in February when I visited my optometrist for new glasses I had expressed concern about my field of vision going black in the left eye while staring and was told this was normal. Turns out, I was correct in thinking that it wasn't. By the time I had finished the test, almost 30 minutes later, my eyes ached and I knew I had failed that particular test.

Now let me say that I have worn glasses since I was seven and contacts since I was eleven so in all honesty I don't really know what it's like to have clear vision. Every time I started to get fuzzy I just saw the regular eye doctor and got new contacts/glasses. About 2 years ago or so I noticed that my contacts always seemed dirty, no matter if they were a new pair and I even had that sensation when I had my glasses on. This was due to my astigmatism, I was told. Wrong. I discussed this with Dr. Harrington and he said that was classic for papilledema, which is a swelling of the optic nerve caused by the excess spinal fluid built up in my brain - which is also causing my headaches.

He did a few more exams, once numbing my eye with these yellow drops that stung like crazy and then dilating my eyes twice to get a good look at my retina and such. He never told me what he saw, only that he wanted me to have an MRI done of my eyes and I have to take two more field vision tests down at Baylor University Hospital in Dallas. So tomorrow I have the MRI and then Monday I have the other tests. He basically explained everything I already knew about the swelling and we discussed an optic nerve fenestration shunt, which essentially drains the excess pressure from your eye into the fatty tissue behind the eye. From everything I've read it's a very common procedure for pseudotumor patients and pretty easy. If that's the route I take, I'll be anxious to see how much better I can see.

Today my eyes have ached because they strained so much yesterday but I did manage to get my contacts in. Between that and all of the staring at the computer I did today it's no wonder they hurt; imagine the worse sinus headache you've ever had and multiply it by 10 - that's how it feels.

At any rate, that's what's going on now. Thursday morning I have my repeat lumbar puncture and I can't wait. Sweet relief!

Love, KC

Mar 26, 2010

A Not-So-Good Day

Not-so-good is an understatement I suppose. More like IT SUCKED. I was rudely awoken from my sleep at 1:15am with a throbbing headache very similar to the one I had on Sunday. Only this time it was accompanied with horrendous nausea and for the life of me I couldn't fall back asleep. After tossing and turning for two hours I finally got up to use the restroom and that only seemed to intensify the throb. So two more hours in and I was still awake so I begged Brent to get me an icepack from the freezer. Normally that would help at least a little bit but no such luck. Finally just before 6:30am I woke him up and told him that I thought I needed to go to the emergency room - I was beyond desperate at this point. We got ready and I sat in my closet on the floor crying trying to put on my boots because I felt so ridiculous.

It was decided that we'd go to Baylor Dallas instead of a hospital in Fort Worth because I knew that my neurologist was on the board of directors there and I really hoped that would get me the help I needed. I didn't think I was going to make it there, I was soooo nauseated. When we finally arrived about 8am they checked me right in and as I'd been warned I got a "you have what?" when they asked why I was there. After explaining it to no less than six people they sent in a nursing student to give me my IV.

Now I know they have to learn somehow but let me tell you this poor girl was all nerves, couldn't find a vein in my right arm (even I can do that) and when she got to my left arm she butchered me. Poor Brent, he couldn't even watch. At any rate they gave me 2mg of Dilaudid and that really seemed to help - I'd never had it before but heard a lot about it on the DailyStrength board I've come to love. Only downside was that it seemed to make my nausea worse so they brought me something for it and couldn't get it in fast enough, I'd had nothing to eat so dry-heaving into the little blue bag was almost worse than actually throwing up. Whatever they gave me didn't work and so I really got sick, all over my bed. This frustrated me because we had to call three times to get a clean sheet but it turned out no one was ever contacting my nurse.

As soon as I got sick the Dilaudid wore off and so they gave me 2mg more and the cycle repeated itself, this time with Zofran for the nausea which still didn't work. My pain level was down to about a 7 so I felt okay to go home if they'd just keep me from throwing up a fifth time, so they said it was okay to take more Zofran and Darovcet and I got to leave about 3pm. Riding home was horrible but we made it and of course, when I got home I couldn't sleep so here I am. :-)

In the midst of all this I did manage to call both my neurologist and my LP doctor. Thankfully I'll be getting another lumbar puncture at 8am on Thursday and I am so ready, even if it only helps for a few days. The hope is that this one will reboot my system into recognizing what a normal CSF pressure is, otherwise I'll meet with a neurosurgeon to discuss the shunt surgery option. I have to say that the pain that I had Sunday and today seemed to be the worst yet so I hope it wasn't caused by the LP.

Sorry if this rambled but I am drugged and tired and hungry at this point. Let's just pray that tomorrow is a better day.

Love, KC

Mar 24, 2010

A Definitive Diagnosis

Yesterday morning I had my follow-up with Dr. Herzog, my new neurologist. Actually we met with Josie, one of his assistants, and she was equally great. We were a little late because of traffic so it took us almost two hours to get there. I have been incredibly nauseated since Sunday and so riding in a car is not fun for me at all.

Speaking of Sunday, it was horrible. We had to take LB home which is bad enough but I woke up with a headache. Well Saturday I woke up with a headache and severe nausea so I took a Zofran and went in to work at the store. The headache never got any better or worse but the nausea let up just a smidge so I could go to my baby cousin Jack’s first birthday party. We got to bed early Saturday night after a rough evening with LB and I didn’t sleep very well, hence the Sunday morning headache. Like an idiot I chose to drive the entire way to Perry, all 4.75 hours of traffic when I knew I needed to pull off but couldn’t find a good on/off exit. Brent wasn’t happy with me.

When we finally got to Perry and when I got out of the car I was swimming. I took LB to use the potty and as soon as I squatted down to help him it felt like I was hit with a hammer. It’s bad when a three year old asks if you’re okay. When we finished I ordered some sweet tea and sat down at the table so we could discuss visitation with LB’s mom. We didn’t wind up leaving until 5:30pm and I could’ve sworn I was dying. I know I can’t die from this but I wasn’t sure that I couldn’t have a seizure – that’s how bad I was hurting. No clue what a seizure is like but that had to be the next step, and I refused to take pain medicine for fear of a rebound headache and besides that shit doesn’t work anyhow. I strongly considered having Brent drive me straight to the ER at Baylor Dallas and begging for a lumbar puncture but felt bad about leaving the dogs longer than necessary (my priorities are too motherly). After some meditated breathing I finally dozed off.

Monday morning was the same scenario, extreme nausea but a slightly less painful headache. I made the drive into work and after walking into the office I became extremely dizzy. This continued on all day until I really got scared at lunchtime, too scared to drive and feeling too weak to even make it to the deli downstairs. So I called Brent and begged him to come get me, and my wonderful husband did just that. Driving would not have been safe for me or anyone at that point. We drove home and I rested on the couch for a bit while he ran an errand and then we took Stormy to the vet for her shots. It was miserable. We went back home and I tried to sleep, incredibly anxious for my appointment the next morning.

Back to yesterday – Josie confirmed what I’d been suspecting since early February. I have pseudotumor cerebri or more correctly known as idiopathic intracranial hypertension. In laymen’s terms my body is fighting a brain tumor that doesn’t actually exist. I have an abundance of spinal fluid that is creating undue pressure on my brain and causing immense pain that medication won’t touch. We were really hoping the relief from the lumbar puncture would’ve lasted longer than it did.

So what’s next for me? Unfortunately I am unable to take the commonly prescribed medication, Diamox, because of the adverse reaction I had to its sister medication, Topamax. Diamox is much stronger than Topamax and it’s just not considered safe for me. That leads me to have another lumbar puncture, a fact which I am very excited about. I can smell the relief already, even if it’s only for a couple of days again. Also, I’ll meet with a neuro-ophthalmologist on March 29th to have my vision tested and make sure my eyes aren’t in trouble. After that I’ll meet back with Dr. Herzog on April 22nd and he will refer me to a neurosurgeon to discuss possible surgery.
Throughout all of this I have been optimistic. I knew what was wrong before the doctor confirmed it so I’ve had time to do a lot of research and come to terms with it. Honestly I feel pretty at peace with the entire thing – I know my options and what the limitations are. It can be a lifelong battle but I will prevail. At this point I will do just about anything for relief. There is an awesome support group on DailyStrength that I have found that have been wonderful, particularly one girl who lives close to me and is about the same age and has been through hell. Her story is very inspiring and she is so strong. While I certainly hope that surgery can be avoided it’s almost a certainty and I’ll just deal with it when it comes.

Love to all,

Mar 16, 2010

And They're Back . . .

. . . with a vengeance I might add. After my lumbar puncture on Thursday morning I did not have a headache at all, until Sunday. Even then they were just little fingers of pain that came and went, never a full blown headache but just letting me know it was still around. So when I woke up yesterday morning I was not expecting to have another headache. It wasn't as severe as they tend to be but just aggravating enough and by the end of the day I was pretty miserable.

When I woke up this morning, it was like I'd never been away from the pain. Nausea had returned, I could barely stand, so I ran through a quick shower and hopped back in bed for 20 minutes willing it away. Even that didn't help, so here I sit at the office frustrated and squinting at my screen and staying as still as possible.

Might I add that the fact that I am trying to get my profit sharing finished ASAP probably isn't helping?

Tonight I go for my sleep study and I'm not looking forward to it. For one I can't sleep without my husband, and secondly I'm very used to hearing the baby monitor at night so I never sleep deeply. Maybe I can talk him into calling me, putting it on speaker and just letting it run all night. Desperate times call for desperate measures, after all.

Love, KC

Mar 11, 2010

Testing, 123

Today I finally had my lumbar puncture done. The one that my old neurologist said was not necessary and my new one wanted done first thing (I knew I liked him!)

We arrived at the Swiss Avenue SurgiCenter at around 9:10am and were both a little skeptical at first - the building looked old and run down and like no one had been there in years, but as we rounded the corner it was a new modern building that was much more comforting. They whisked me right in and checked my blood pressure and oxygen, which was a little lower than normal so they immediately made me put those stupid things in my nose. Ugh. I got changed into a gown and little puppy feet socks and settled back, answering the same questions three times for three different nurses.

When the time came for my IV, I was really hoping for it to be in my arm and not my hand, but no such luck. I didn't even get numbing medicine, and then she didn't think she got the needle in the vein that was so large even I could have gotten it and proceeded to wiggle it around!! Agh!! Finally she got it in and taped down, in the process causing me severe discomfort. The anesthesiologist came by and I told her how I always got sick after going under so they gave me some Zofran and wheeled me to the OR. They had me scoot over to a different table and lay on my left side, and that's the last thing I remember!

I woke up about a half hour later and felt wonderful, the best I've ever felt after going under. I sat up and talked to the nurses and drank my tea, waiting for them to let me see Brent. Instead, after about a half hour, I was allowed to get dressed and leave. It was so cool. We drove home and here I sit, feeling great and just a little stiff from being on my back all day - and extremely bored!! Oh, and I have a tiny cute little bandaid, right in the middle of my tattoo.
So, the good news - my opening intracranial pressure was 360mm/H20. The normal acceptable rate is 200mm/H20, and anything over 250mm/H20 is considered high. They drained out 160mm to make my levels normal. My levels were well over what is considered high and just confirms what I've thought all along - Idopathic Intracranial Hypertension. Doesn't sound like good news? Well I think it is, because it means I have a diagnosis. To me, that is a blessing.

We'll see Dr. Herzog on Tuesday, March 23rd at 8:30am. I am so excited to hear what my next step is.

Until then, KC

Mar 5, 2010

The Migraine Saga, from the Beginning

I’ve had headaches for as long as I can remember. My mom thought it was probably just my vision, because I’d been wearing glasses since the first grade with my eyesight constantly declining. And honestly, that probably was part of the problem. I can first remember them being particularly bad in the fourth grade, when I’d ride the school bus home in the afternoon. It was hot in Texas up until November sometimes and I was the last kid off the bus, so an hour of riding with the windows down on dirt roads did not help me. I’d come home nearly every afternoon with a headache, and my mom would explain it away as growing pains or my eyes. I think that maybe she thought I was becoming a hypochondriac because of how often I complained, but it hurt. One particular incident, when I was maybe 13, we’d been at the pool in Gainesville swimming during the summer and for some reason as we were driving home that afternoon I was hit with one of the worst headaches I remember of my teens. We were driving southbound on I-35 and the sun was directly above me, and the pain was unimaginable. I thought I was dying. Looking back now that was probably the first migraine I ever remember having, though I didn’t know it at the time.

When you have headaches, at first you don’t think to document any sort of pattern. I was a kid and headaches were my “normal”. As I got older they continued and doctors thought that maybe my sinuses were to blame, along with my eyes still. It wasn’t until 2004 that I was first diagnosed with migraines. My doctor at the time thought they were probably stress related, as I’d been recently divorced, working full-time an hour from home and I was barely 19. She gave me a prescription for Relpax and told me to relax. Taking that medication was an experience that I will never forget. I’d gotten home early and was going to cook pork chops for my mom and stepdad for dinner. It probably wasn’t 30 minutes after I’d taken it, as I was putting the pan on the stove, I felt like someone had dropped a 100lb weight on my head. My head was crushing my neck into my body and I couldn’t even stand up. Somehow I managed to make it to my bedroom where I lay crying for the next two hours. When my mom came home finally, I don’t think she fully understood the extent of the pain I was in, more from the medicine than the migraine itself. She’s always been the tough love type and as a parent now I understand that, but it’s frustrating when they don’t believe you. Just ask her about the time I broke my fingers in 2nd grade.

Over the next two years the migraines came and went, not very frequently but I seemed to always have a headache of some sort. After a really bad bout of sinus infections my primary care doctor sent me to see a neurologist. As the headaches had worsened I’d been having a lot of difficulty sleeping, so he thought maybe that was the issue. A sleep study was scheduled in June 2006 and it was found I woke up around 24 times every hour. No wonder I was exhausted! Turns out that I had sleep apnea as a result of my tonsils crowding my throat, a problem which I’d had since I was very young and my mother lobbied to have them taken out as a kid but no doctor would. So I had them out at 22, in a children’s hospital, complete with puppy feet socks and an orange Popsicle. To be truthful that was probably the best and worst experience of my life. Being the optimist I am I wrongly assumed I’d be back at work in a week; in fact, it was 22 days of sheer hell. Sleeping was impossible because my throat would dry out, and I had nothing but liquid hydrocodone and water for about 17 days, as well as excruciating headaches. And somehow I only lost 15lbs . . .

Having my tonsillectomy seemed to help for a while, probably six months. Then at the end of 2006, things went from bad to worse. For some reason the migraines came back with a vengeance, worse than ever before. My neurologist decided that it was time for a preventative medicine and started me on Topamax. Now, I’d heard horror stories of this stuff but given the small dosage I was on really didn’t think it would bother me. WRONG. Within a week, I was stuttering and forgetful; by the end of a month, I was illiterate. Seriously, my 141 IQ dropped about 40 points. Terrified I was going to lose my job I quit taking the medicine and asked for something else. That’s when I got to try Atenolol, a beta blocker that is commonly used for patients with high blood pressure. Since my pressure was already low by nature they were careful of how much I took, and at my highest took about 150mg a day until my blood pressure was dropping to around 90/60 and I was feeling woozy all the time. All in all the Atenolol worked for well over a year and then quit suddenly when my blood pressure got so low.

It is important to note that I was living the typical lifestyle of a 22 year old kid in Dallas at that time. I had started working for a band called Exit 380, I was out late and partying and drinking on the weekends and paying for it later. There is no doubt that this attributed to my headaches at the time, but I was either ignorant of the fact or just ignored it entirely. My guess is the latter.

Just before the summer of 2008 the neurologist decided to try me on a drug called Zonegran, which is in the same family as Topamax but with less side effects. Gradually my dosage increased over the months until the point I was taking 200mg a day because the headaches had returned, presumably because I’d started taking birth control again. During this time I met my husband and in August 2009 I quit taking the medication and the birth control so that we could clear my system entirely and try to have a baby. Making sure I avoided all possible triggers, I took vitamins daily and only had a few migraines through the end of the year. I had quit drinking almost entirely after a really bad case of pneumonia in January 2009 and had a glass of wine maybe every three months. Our wedding was planned for January 18, 2010 and I really had no stress in my life at all; I was blessed and blissful.

Whatever it is about the first of the year I couldn’t tell you, but it hates me. On January 3rd I’d planned a really nice meal for my husband of grilled lamb shoulder, steamed carrots and homemade sparkling juice. Within 15 minutes of eating this meal I had a severe migraine and I knew exactly why – carrots. One of my favorite vegetables and every time I eat them I pay for it, especially if they’re cooked. I grabbed my handy icepack from the freezer and retreated to the bedroom as my husband put our son to bed. Icepacks always seem to numb the pain, or just replace the pain with a different pain, but either way we proceeded to do what married people do . . . and that’s when I had the strangest headache onset I’d had for the second time in a week. It was like I’d been hit in the head with a hammer, instantly debilitating and collapsing me to the ground.

The first time this happened, my husband tried to rush me to the emergency room but I refused. After lying on my back for about 15 minutes and drinking some tea the pain seemed to subside in intensity some, but lasted for three full days. This second time set off the pattern I’m currently in. That was January 3rd, today is March 5th – and I’ve had a headache of migraine intensity every single day for these past eight weeks. Pain has become my new “normal”. I don’t know a day without a searing headache. Of course after that second incident I called up my neurologist immediately and he scheduled me for an MRA, a type of MRI that looks at the veins in your brain and specifically aneurysms. I was experiencing what was called a coital headache but they usually went away in a couple of hours, not a couple of days, and he understood that I didn’t want to be in this pain during my honeymoon. He had me taking Darvocet, Naproxen and Zofran since I’d quit taking the Zonegran to manage the pain and nausea and none of that was helping, so he gave me a drug called Maxalt that dissolved under your tongue. I affectionately called it my “I Don’t Give a Damn” drug because that’s how I felt, I could care less about anything at that point, but I still had the headache. To be truthful I was a little scared, not because I ever thought I had anything wrong with my brain but because I might be stuck with this pain.

See, that’s the thing – never once since this started did I think I had something wrong with my head. There were no symptoms of a tumor/aneurysm/clot ever, just severe pressure that resulting in stabbing, aching pain. And I was right all along. My biggest frustration with this neurologist is that all he wanted to do was medicate me and not address the underlying problems. It got so bad at one point that my husband really did have to take me to the emergency room on the night of February 9th. Light was bothering me, which was a new thing, and they gave me morphine and phenergan which did nothing. NOTHING. That stuff knocked me OUT after my knee surgery – and coincidently that’s when they decided I was allergic to the hydrocodone after it gave me a migraine that left me useless for two days. I managed to get in with the neurologist two days later and I left there in hysterics, during the biggest snowstorm Dallas has ever seen. He was two hours late seeing me, and told me I needed to try this nasal spray called Migranal three times a day for the next three days, as well as a steroid pack. This cost $100 and I was at my wit’s end. On my way home I called Texas Neurology and they got me in with Dr. Herzog, the headache specialist, for Tuesday February 23rd. I was elated.

Migranal was not my friend. Initially it made the pain double every time I took it, and after day two just quit working entirely. I was working at the store that day and happened to read an article about a young girl who’d just won Grand Champion at the stock show in Fort Worth, and about how she almost didn’t get to compete because of debilitating headaches. Immediately I grabbed up the paper and read the article, feeling a strange connection to this girl I didn’t know but related to on so many levels. Never did the article reveal what she suffered from but we had identical symptoms so to Google I went. After about four hours of exhaustive searching, I found what I was looking for, a possible diagnosis. I sat in tears in the store office, reading through this website dedicated to the disorder and frantically calling my husband to tell him. This could be it, and I educated myself as much as possible before my appointment with Dr. Herzog.

Dr. Herzog reminded me a lot of my husband, fast talker, thorough and to the point. I had gone in there armed with my MRA, MRI, CT and medical records, a list of symptoms over the years and questions to ask. He literally read through my chart and asked me two questions, the latter being about my pain level. Explaining to him that it seemed like the pain was a result of the pressure, and that it was always the worst during the morning and right before I went to sleep, and that no drugs were helping, the doctor apparently read my mind.

“Have you ever heard of pseudotumor cerebri?”

I was so relieved I thought I might cry. That was exactly what I was going to ask him about. He scheduled me for an MRV, another type of MRI, as well as a lumbar puncture and put me on a Frova bridge – I take the medicine twice a day for 10 days. When I’d asked my prior neurologist about this test, he’d outright refused, saying that it was a last ditch effort that would require me to be in the hospital for three days and on intravenous pain meds. Not so, actually. Since my MRV was clear, as I knew it would be, I’ll have a lumbar puncture, aka spinal tap, on Thursday March 11th. Yes, I will have to be in the hospital for three hours, and lie flat for 24 hours after that, but the procedure will only take 15 minutes. Even better, they’ll tell me my pressure reading before I leave and as long as it’s less than 200mm/H20 then it’s likely I don’t have the disorder. Even if I do, it’s a diagnosis and I’m happy to have one that can lead to a proper treatment plan.

So today is my last day on the Frova. I’ve seen no change except that I can’t put sentences together properly or call things by their proper names, basically I’m really confused. It’s been a constant battle that’s just been getting worse over the last couple of months but I’m sticking it out, hoping for answers. I have found such great comfort and knowledge with the Intracranial Hypertension Research Foundation and am just looking forward to the end of this saga. I know my family, and my work, are as well. Hopefully I’ll be back with news next week, but I don’t see any of it being bad news; any diagnosis to me at this point is good news.

Thank you to everyone who has said an extra prayer for me, and to the former coworker who has been a great source of hope without realizing it, my friend in the headache gallery.

Love, KC
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