To read my full story, please start at the beginning of my blog! Thanks!
Since I had gotten the headache on January 17, 2001, I still had an entire semester to get through before summer break. I went to school in a rural area, 3 hours from home, and my insurance wouldn’t even really pay for much in terms of specialists out there. Frankly, there really weren’t many specialists out there – and none that would have really been able to help me. So I survived the semester with periodic phone calls to my family doc, who tried to prescribe various things in an attempt to help. It was a sad state of affairs, but I was certain that each day when I woke up, that would be the day when the headache would be gone. I still didn’t really have a diagnosis other than status migrainosus, but it seemed a bit odd that status migrainosus would continue on for a few months! At some point, my family doc recommended that I go see a neurologist.
There are two very well-known major health systems in the big city closest to my home town, and in high school, I had been a volunteer at a hospital that belonged to one of those two systems. So that was basically how I decided which one to call first. I phoned their basic physician referral line, and I told an operator about my problem. At first, she suggested a doctor closer to my hometown, which is 45 minutes outside the city without traffic. However, the name she said was the neurologist I’d seen during that first hospital stay. Even though he had told me he would continue to see me as an outpatient if I wanted, I really didn’t feel like going to a doctor who had said to me, “Well since you don’t have a brain tumor, there is nothing I can really do to help you,” and downplayed all of our concerns. At this point, I wanted someone who could diagnose my problem and knock it out. (In other words, I needed a doctor like House, M.D. – but first of all, this was all occurring in the days before House was even a primetime character, and also – House basically kills his patients before discovering what is wrong with them! I just really needed someone who would stop at nothing to help me – that’s what I truly wanted!) Once I said that I didn’t want to go to that particular neurologist and asked the woman if there wasn’t anybody I could see in the city (I believed that the only way I was going to get an answer to a tough problem was to go to the city…), the operator found a neurologist connected to Big City Hospital. I would learn several months later that Big City Hospital actually has a headache center with neurologists who only work with headache patients – don’t you think it’s odd that their physician referral service wouldn’t tell me about this when I was calling with a primary problem of headache? At any rate…
So in June, I went into the city to see the general neurologist who actually reminded me somewhat of Conan O’Brien in the way he looked. Didn’t quite have the very funny and somewhat bizarre sense of humor of Conan, but he still was a nice guy who genuinely wanted to help. During the first part of the appointment, he asked me for a history of my headache (which had now been around for 5 months), and he asked what had been done so far. I still hadn’t figured out that there was more out there than your “average headache”, and when he asked me about headaches I’d had before this one, I responded with, “You know…your average headache!” He asked me to clarify, and when I described what I’d been experiencing episodically from childhood, he said that they were most likely migraines. Well – at least that meant I’d been suffering from migraine before, so a status migraine wouldn’t be a complete absurdity.
I knew this headache was different, but it had a lot of the features of migraine. I was very sensitive to light, sound, smells. Light still remains one of my worst triggers. I can be having a good day, but if I suddenly see a bright light all the sudden, my head pain spikes to a high level – and it often triggers my head pain to be worse for hours on end, until I take an abortive medication. Sound is also something that truly bothers me. I listen to the tv at a low volume, and I’ve been known to say that sound actually “hurts”. I can feel the pain of sound in my bones at times. When I was around loud music or loud people even, I’d feel pain and a very strong feeling to get away from it. This was a bit troublesome, being a music major, but it wasn’t so much expected sound that bothered me. It may seem odd, but unexpected sounds bothered me more than anything – or sounds that I couldn’t get away from if I wanted to. Loud children in the store, loud music from a neighbor in my apartment building, loud sounds on the tv or at the movie theatre, etc. When I’m at home with my family, I notice a clear difference because my dad listens to the tv at a much higher volume than I do. If the movie is loud, then I have to go upstairs to my room. I’ve had arguments with family when I want to watch a sports game with them, but they insist on screaming and whooping with every play. They often get annoyed and tell me to “chill out” – but if they could feel the utter explosion that goes off in my brain every time they do something like that, then maybe they would understand.
So I explained to my new neurologist that light and sound bothered me. I also explained about the constant throbbing on the right side of my head as well as some nausea. I felt better with ice packs and darkness – all things that are often characteristic of migraine. The new neurologist diagnosed me again with status migrainosus.
Then he said something that really puzzled me. He asked me if I needed to be admitted to the hospital for the severity of the migraine. I was taken aback – the hospital? Why would I need to be admitted to the hospital for this if it’s just a migraine? Again, at the time, I didn’t know that this sort of thing was done. I had no idea that migraine and headaches could be so devastating and disabling that a person would need to go to the hospital for it. Besides, what would they even do in the hospital? I said I didn’t think I needed that… He then prescribed propranolol (Inderal LA) for me, which is a beta blocker – or a medication used to treat hypertension (high blood pressure). This was especially fitting as ever since the onset of the headache, I’d been having problems with hypertension. This was first noted at the appointment with my family doc the night I came home from college. I again had it in the emergency department and throughout the hospital stay. Initially, the hypertension could have been from pain, stress, or anxiety. However, it persisted, even at times when I was relaxed. I’d always had a rapid heart rate, and propranolol can help lower the heart rate. My dad has hypertension, as does just about everyone in his family – and my mom’s side of the family is also riddled with hypertension, so it was something to think about. Hypertension can also lead to headaches. So I started the propranolol. I had a home blood pressure monitor that belonged to my dad, so I was able to see the effects of the medication on my blood pressure and heart rate.
He also gave me a rescue medication (used when all other abortives for migraine fail) called Fioricet, which contains butalbital (a barbiturate), acetaminophen (tylenol), and caffeine. I was to only use this at most twice a week, and I followed these guidelines religiously. I believe I mentioned in another post that I have always been a rule follower. I think my family was nervous about my being prescribed any sort of pain medication, but I had never been a wild child. I didn’t go out much, even before the headache. I didn’t drink alcohol until I was in college. I had never done drugs in my life. The only medications I’d ever taken regularly prior to college were allergy meds. But still, there are a lot of scare-mongers out there regarding addiction, so sometimes the only story the average family hears is that anyone can get addicted to anything used for pain. Therefore, I was just that much more careful and restricted regarding my use of the Fioricet.
About two weeks after starting the propranolol, I was in sorry shape. The fioricet didn’t even help all that much when I took it. Nothing was really relieving the severity of my headache. I had returned to my summer job from the previous year – working in dietary at a local hospital, but I was having a hard time working. As I was a part-time employee, we were only allowed two call-outs a year, but if we went into work and were sent home, then it didn’t count as a call-out. I actually got up one morning, took a quick shower, threw on my uniform, didn’t even comb my hair because the act of combing my hair actually made my head feel worse (and my hair is naturally curly, which definitely helps!), and went to work – only to tell them that I couldn’t work that day due to the headache, but I’d had to go in since I didn’t want to get in trouble for calling out. I felt bad doing this. I had always worked hard as an employee, and I valued having good attendance. During that time, I would get up in the morning, get a shower, and then lay on the couch for hours – unable to escape the head pain.
This was all so new to me. At the time, I just had no idea what was going on, and each day that the pain remained with me, I felt more depressed, as I wasn’t sure if there was an end in sight. Even though I had started a new medication, I wasn’t seeing any results at this point, and I wasn’t sure if it was going to help at all. (I later learned that you really need to give a migraine preventive about 2 months for a fair trial.) The pain had total control over me at that point. In the years since then, I truly believe that I’ve experienced far worse pain than I had at that time – I even believe that now, my headache is worse on average than it was then, but I do so much more now. I guess I got to the point where I realized that I had to keep living my life because the headache might not ever leave. In the beginning, it was very hard to deal with – I felt like my life had been completely turned upside down. When I got the headache, I was in a relatively new relationship. I was happy with school. I had great grades. I was a successful pianist. I was happy. My relationship ended during the summer after the onset of the headache; I’d had trouble keeping up my grades; many of my friends sort of alienated me as they couldn’t understand what I was going through and I never really wanted to go out much; and even piano was becoming a struggle. So that first summer, I really was having a hard time coping.
Two weeks after seeing the neurologist, I put in a call to him because I felt like things weren’t going well. He called me back later that day, and he asked me all about how things had been since I’d seen him. He thought that maybe it was time for a hospital stay. My parents really weren’t sure what this meant, so my dad even spoke to my neurologist on the phone. My neurologist was very patient with us and answered all of my questions and then the additional questions that my family had. He arranged for me to go down to the Big City Hospital and be a direct admission. This meant that I’d have to go to the ER, register there as a direct admit, and if they had a bed available and all the proper channels had been followed by the doctor, I would go upstairs. If not, I’d have to be seen and evaluated in the ER before being admitted.
…To Be Continued…
*I have (and will continue) linked to a number of outside websites to provide more information about terminology, diagnosis, medications, and so on. I do not have any affiliations with these websites. I am merely linking to sites that I find informative in order to illustrate the topic I am discussing. Just wanted to add this disclaimer!*
Sorry that I haven’t posted in quite some time!! I had good intentions for this blog, as at the time, I was really motivated to share my story. However, things in my life were up, then down, then all over the place, so I wasn’t really able to devote extra time to blogging. But I am interrupting this hiatus to share that I have recently discovered (thanks to a commenter) that an NDPH support group exists!! Just click here to go to the NDPH support site over at mdjunction.com. While I haven’t had much time this week to participate there, I think this is a great thing!! For a lot of years, I’ve been thinking that an NDPH group needs to be started somewhere on the web. Granted, we (those of us with NDPH) are small in number, but this is such a life-altering condition that it is just that much more important to connect with others who are going through the same thing. In addition, because NDPH is so chronic and can last for years and years, sufferers are at various stages at any given point. For instance, I’m now nearly 6.5 years into having NDPH, but I can remember what the first 6 months were like for me to experience, and if I can help guide someone through that time or offer support, then I think that would be wonderful. Likewise, I would hope to also gain support and guidance from those who have been at this “game” even longer than I have been!
Posted by paininthebrain 
Pain in the Brain 