So, I wasn’t running around sharing with everyone that I had this medical condition when it happened. My friends who were taking care of me knew, my co-workers knew, my family knew, and that’s about it. I was on the fence about really going into detail here, because really…I am doing much better! And I feel really lucky that it’s something that is healing, that it wasn’t something life threatening, and that I have been able to gain my quality of life back (knock-on-wood) in a relatively short amount of time.
But, this experience is going to be tied to how I approach my first year of teaching. It has changed how I value being able to have the ability to do my job, how I value my life, and the lessons I have learned will effect this little adventure I am embarking on. Also, it IS a rare and largely unknown condition. And if I can help raise some sort of awareness, in case someone out there has a similar headache that isn’t getting diagnosed correctly and is suffering ( doctors and friends/family suspected migraine, brain tumor, meningitis or aneurysm before the correct diagnosis appeared), they know about this possibility. This condition, while rare, is misdiagnosed and thus probably more common than we think. And the misdiagnosis causes more problems, last pain, and financial cost than it should. In fact, I read a study that 0% of cases were diagnosed properly in the first visit to the E.R. WHA!!! And I read numerous stories about people having to fight for themselves at the doctor, that there WAS something wrong, and it wasn’t just “stress” or “anxiety” related. I feel lucky that I had a mom who heard about George Clooney (he’s a leaker! More about this in a later post.) and told me about leaks, a general practitioner who believed my symptoms didn’t add up, and a neurologist who was informed about CSF leaks!
So, what is it?
Well, we all have fluid floating around our brain and spine, that serves as a protective barrier for our thinking cap. And holding this fluid in is a relatively strong tissue called our dura, which is around our brain and spinal region. Well, apparently, my dura had a problem, and tore somewhere. This caused my cerebrospinal fluid to leak out. Which then, caused my headaches because my brain was sitting lower than it should be. Typically, people get these leaks after a spinal tap/lumber puncture, after some sort of trama, or an epidural. I had none of the above (although I have searched every moment of the weeks leading up to my symptoms for a reason…and so far…I did dance super hard two nights before. Could I have danced to the point of causing a leak? Of course I would!). Thus, mine is spontaneous, it just happened. I’m a lucky one!
Without going on and on….if you want more information…this article on wikipedia is pretty good.
How did I know I had this?
Well, an MRI with contrast is one great way to know. The evidence my MRI showed was that my meninges were inflamed which is evidence of intercranial hypotension (not enough pressure in my brain). Which is, from what I can tell, only caused by a CSF leak, and POTS (a syndrome I don’t have, at least I don’t think so at this point). In terms of my symptoms, the biggest hint that this was NOT a normal headache was that it was POSITIONAL. Sitting upright, standing, or walking was pure agony. I didn’t feel like myself, I had a lot of neck pain and pain in the back of my head, and taking steps was torture. But laying down? I felt fine! Within minuets of laying down I was laughing, talking, chatting, and having a ball. And then I was confused about why that was the case, and so was my general practitioner. This was the telling symptom for my neurologist, and if you are experiencing anything like that ever…ask your doctor about a CSF leak. The second biggest symptom was my hearing. The second day of my headaches, I woke up feeling like I was listening to the world underwater. My ears felt plugged in a way I had never felt before. I was also VERY sensitive to high and low pitch sounds. I am still dealing with some ear problems today, but nowhere near as bad. I also experienced numbness of my arm, face pain and numbness, nausea, back pain and interscapular pain (evidence that my leak is probably at the spine, and not my head), stiff neck, extreme fatigue, tingly head, and sharp pains in my head. Living a normal life was impossible, I was pretty much limited to laying down all day, all the time.
What do you do about a CSF leak?
Well, according to my doctor you start very conservatively. First I rested. Like, don’t do anything but go to the bathroom, watch TV, read, eat, and sleep kind of rest. He actual prescribed me some “DVR time”, and I was happy to follow through. And rest is what I did, and allI could do, for a good few weeks. I also increased fluid intake, and I got to drink lots of caffeine (that was my favorite part! Did you know caffeine speeds up production of the cerebrospinal fluid? Now you do!). The hopes are, that wherever the dura tore, it heals on it’s own with these conservative measures.
If you don’t heal with these measures, then there are some more invasive steps to be taken such as getting an epidural of your own blood into your spine to patch the leak. I’m not going to go into too much detail, because I am not an expert, and I am in the clear right now (knock on wood) of having to deal with these steps. But the wikipedia article does explain a bit more on this if you are curious.
So, how are you?
I feel so thankful for where I am at only a month and half later. There were some dark days where I thought I was going to have months upon months of pain and disability. I still have some symptoms, but they are getting less and less noticeable every day. And I can function like a normal person, and go out and do things now. I would say I am at 90% of my normal self! I have to credit my amazing friends and family who were there to take care of me, take me to the doctors, be with me through the anxiety, and feed me so that I was able to rest, rest, and rest some more. When I was Googling about CSF leaks ( which I did a bit too much of) I didn’t read about many people who healed through rest online. Lots of scary stories are online about people struggling for years, but no one shared the good! So, here is a positive story, floating out in the internet!
Phew! I think I earned a minor in neurology through all of this. I’ve read radiology journals, neurology articles, and did way too much research for my own good at this point. But I am no doctor. If you happen to stumble on my blog, and this all sounds familiar, just go to a doctor! And know, it’s all going to be alright, even thought it doesn’t feel like it at times.
That’s it for now. I think you all get the point. I might blog the actual story of it all unfolding later, or I might jump into some teacher stuff. Or something else. But for now, it’s bed time. I still need my rest!