After a long hiatus…

Pain in the Brain has returned!  I apologize for basically jumping ship after getting started on this blog awhile back!  I have had many things going on in the world of headaches and life for me in the past several months, which will give me much to write about!  I also plan to update my sidebar with migraine and headache blog links, in addition to the sites I have listed of headache centers and headache resource pages.

Stick around for more on my story of life with migraine and headaches, as well as general commentary on issues relating to chronic pain.

NDPH Support Group

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!

In so many ways, people with chronic conditions go through the Kübler-Ross Five Stages of Grief of denial, anger, bargaining, depression, and acceptance. While these stages are usually applied to those who have received a terminal diagnosis or for those who are grieving the loss of a loved one, they can be adapted and applied to those who are suffering with chronic illness as well. At some point, I will share a paper that I wrote for nursing school on the “Theory of Chronic Sorrow”. While my paper was designed to talk about how that particular theory applied to the parents of neonates, I found in my research that it could also apply to those with chronic illness. So what I’m getting at here is that those with such a chronic condition like NDPH will all be in varying stages of these grieving processes in some way. And if the theory of chronic sorrow applies, we go through these stages again and again each time we experience a strong reminder of what we lost. Because we’ll all be at different points on the journey, it’s good to have others around to help us through it.

So, if you or a loved one is suffering from NDPH, I strongly suggest that you check out the New Daily Persistent Headache (NDPH) Online Support Group over at mdjunction.com.

My First Neurologist

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!*

The Virus Before the Storm

In November of 2000, a bad virus was going around the university where I attended school. It was really just a bad cold bug, but my university was huge, and it seemed like anyone and everyone was rushing to student health to get antibiotics and notes out of class. So many people were rushing to student health, in fact, that the health center put out word that anyone with certain signs and symptoms should not come to the health center as they just had a simple virus that would not warrant antibiotics.

Right at the end of November, I caught it. I’m sure that sharing practice rooms with the rest of the music department and then some probably didn’t help. The piano that I spent several hours a day at was also touched by several other students… So anyway – it started off like a bad cold. However, it persisted…and moved to my lungs. I was sure it was just a bad cold, and I wasn’t going to go to student health. I was always someone to follow the rules, and I knew that they couldn’t do anything for me.

But things kept getting worse. My ears were hurting quite a bit. My sinuses felt completely full. My lungs were very junky, and I’d spend all night up coughing. I’d started getting some nice circles under my eyes from not sleeping due to the cough. I looked in the mirror and saw how pasty my skin was looking – and my lips had this bluish tint to them. I knew this was a really bad infection, but again I brushed it off. However, it got to the point that before I laid down for bed on the top bunk of my shared bunkbed, I would actually think about my own worry that I’d fall asleep and not be able to breathe – drowning in secretions. It felt like I was breathing through a straw.

So finally I made an appointment with student health. The PA that I saw there took a listen to my lungs and said that she had no idea how I had managed through this – my lungs were full of junk. I had an ear infection, a sinus infection, and a nice upper respiratory thing that was probably about a day from turning into pneumonia – since I’d let it get that bad. She prescribed some antibiotics and a decongestant for me. Within days, I began to feel better. The cough lasted way past the infection – as coughs always do. So I guess maybe it wasn’t the virus going around, but I’d definitely caught something – and fortunately it was something that responded to antibiotics. Having my lungs clear up finally allowed me to rest and recover.

This was about a month and a half before getting the headache. In new daily persistent headache, many times the sufferer has a virus prior to onset of the headache. To me, this suggests some sort of autoimmune connection. It also tends to hit women in their 20s-40s, and they’ve either never suffered from headaches before or they had no increase in their usual headache leading to this new, constant headache type. A year and a half ago, I read the revised criteria being proposed for new daily persistent headache. I don’t actually know if those have been formally adopted yet, but the major change was the description of the headache as migraine-like as opposed to tension-like. It appeared to me to be a much more accurate description of NDPH, at least as I knew it.

So in terms of NDPH, that virus was probably what trigged my brain to freak out and develop a headache that has never gone away. Interesting….

The Day That Changed My Life

Prior to getting NDPH, I never knew that people could have headaches that lasted more than a few hours or maybe a day. I also had no idea that there were such things as headache specialists. When I first heard of these things, it took quite awhile for me to get used to the idea! In retrospect, I’d been having episodic migraines 1-2x a month since I was a child, but nothing that wouldn’t go away with a little rest and maybe some motrin. I never knew they were migraines as for the most part, I didn’t really have a lot of nausea or have to lie down in a dark room for extended periods of time. Nobody in my family had ever had migraine, so this wasn’t familiar territory. So let’s go back to January 17, 2001.

I was a sophomore in college. This was at the very beginning of my spring semester, sophomore year. I was 20 years old. I’d recently decided to change my major (not a big change, but sort of a change within the same program), and I was very happy with my decision. It was not a stressful time for me. I say these things because I’m often asked if I was under a lot of stress at the time I got the headache. I was actually sitting in a classroom, waiting for my 9:05am music theory class to start. It was around 9:00am when I first noticed it – this constant pulsating in the right parietal region of my head. If I could draw a line up from my ear to the center of the right half of my head, and then go down maybe 2 centimeters or so, this was the location of the pulsating. It hurt – but it wasn’t excruciating by any means. I thought I simply had “your average headache.” Later, when asked to describe the headache, I kept saying, “Well I’ve had some headaches before, but this is different. The headaches I had before were just your normal headache. You know what I mean?” The doctors would say, “Well…what is a normal headache for you?” I would look at them, puzzled, and say, “Well – I used to get throbbing. I couldn’t stand being around heat. Sometimes I would feel nauseous, but I didn’t throw up. Bright lights bothered me.” The doctors would then inform me that my “normal headache” was in fact, a migraine. I’d had no idea that I’d been having episodic migraine for years!

The first migraine that I can actually remember experiencing was when I was about 8 years old. I was in the basement of our church, practicing for First Communion. We’d been given grape juice and a piece of bread, and we were watching a movie about Jesus and The Last Supper. I remember feeling very sick to my stomach and having this pain across my forehead and behind my eyes that I simply could not explain. I didn’t say anything. To me, it was bizarre to feel this way, and I didn’t want to attract attention. Later on, I remember experiencing the same thing on and off – one night I had a bad one as I was sitting at home in front of the fireplace in our family room. I kept having to go lie down on the living room couch because the fire was too hot. I felt nauseous, and my head was throbbing terribly. But these headaches usually left within a few hours or by the next day.

So when I noticed this bizarre pulsating feeling in my head, the only thought I had was, “hmm…that’s odd…” I went out to the water fountain, took 3 motrin, and went back to class. I thought it was strange that this pulsating did not go away over the next 3 days. I was exhausted, as I wasn’t sleeping very well, and the pain had been steadily increasing. I felt drained from this constant drone inside my head, and it was becoming difficult to focus on my schoolwork. On day 3 of the headache, I called my mom and told her about what I was experiencing. I asked her what she thought I should do, and she suggested that I go to the student health center.

So that same day, I went to our student health center. The doctor there asked a number of questions and did a neuro exam as well as examined my eyes. This was the first time I remember having to describe how this was different from my “normal headaches” and what my normal headaches really were. The doctor diagnosed me with status migrainosus, and he prescribed naproxen (basically prescription-strength Aleve) and promethazine (phenergan, an anti-nausea drug).

That evening, I returned to my one-bedroom apartment that I shared with a roommate who I knew from choir. My roomie wasn’t home when I took the first doses of these medications. The promethazine completely knocked me out. When my roommate came home, she started making dinner and was making a lot of noise in the kitchen, as I was asleep, unmoving, in a chair about 8 feet away. She grew concerned as time went by, and I didn’t even change position. She later told me she even walked over to make sure I was still breathing!

The next day, I awoke still in pain – only by this time, the pain had gotten so much worse. I was scheduled to take the first four sections of the PRAXIS exams for teacher certification that day. (I was in a music education program at the time.) I didn’t want to take the promethazine again, because I couldn’t afford to sleep through the exams and risk failure, so I simply took the naproxen and went to sit for the exams. The first four general exams are considerably easy, and the sections I sat for were reading, listening, math, and writing. I remember sitting there in the listening section, feeling the ever-increasing throbbing in my head, and thinking to myself, “What if this is the last thing I ever do? What if this is an aneurysm in my head, and I die right here taking the PRAXIS? How much would that suck….” Looking back, that’s kinda funny, but at the time, I was terrified! I didn’t know if I had some sort of brain tumor or other serious problem going on. I actually had a benign tumor when I was in high school, so the thought of a brain tumor was actually seeming like a real possibility.

The PRAXIS exams were on a Saturday, and as the weekend progressed, I was starting to get very upset. I was talking on the phone to my parents quite a lot, and they were trying to be encouraging, but I was literally starting to flip out. I couldn’t understand why this headache wasn’t going away, and I was really getting worried about it. On Monday, I went back to the student health center and saw the same physician. This time, I was in even more pain. He decided that we should get a CT scan of my head, and that’s when I decided that I wanted to go home. I was in college about 3 hours away from home, and my dad drove up to pick me up.

My family doctor, who I’d been going to since I was 11, had office hours on Mondays until 8pm, so he saw me as the last patient of the day. He was a great, very caring physician. His twin daughters actually took piano lessons from the same teacher I took from prior to going to college, so we had an additional bond. He was truly concerned over what was going on with me, since he knew I didn’t have a history of migraine – or so we thought! My memory is fuzzy on the early meds he prescribed for me to try to knock out the headache, but I know he prescribed fiorinol and a triptan, which I think was zomig in pill form. I went to the CT scan, which was normal. My headaches continued to get worse, and none of the medications were helping. I was tyring to remain calm as getting worked up simply made things worse, but I had several moments where I was really freaking out over what was going on. We called my family doc after trying all of his recommendations, and he suggested I go to the ER for some bloodwork and an attempt to break the headache. He called ahead to let them know we were coming.

At the time my parents took me to the ER, it was 8 days into my headache, and the first time I would run into some serious stigma issues regarding headaches. I saw a physician’s assistant in the ER, and to this day, I still remember her name and what she looked like. She was nice enough at first, but I think her frustration began to mount as she continued to try various pain medications and my headache just wasn’t really improving all that much. She tried demerol and then dilaudid and then toradol. After the toradol, my headache level actually dropped down to about a 5, so she planned to discharge me. However, I had received all of these medications in pretty close proximity to one another, and I started vomiting. As she realized that I was vomiting repeatedly, she sighed and said, “Well…you can’t go home like this. Now we’re going to have to admit you. They’re going to have to put a tube down your nose if you don’t stop vomiting.” Tube? Nose? Doesn’t sound good… She left the curtained area, and my mom went out also to check on something. At that time, my mom overheard the PA announce to everyone within hearing range that, “This girl has a headache for attention.” I’m glad I didn’t hear that at the time… It was bad enough to be going through this, and that would have really been too much for me to deal with at that point. As the PA was going off shift, my mom was at my side and called out a thank you to her, but the PA dismissed my mom’s gratitude with a hand wave and a frown as she hurried off.

There were no beds in the hospital, so I had to stay in the ER. They brought a hospital bed into the room where I was so that I could sleep on that instead. I was begging for a glass of water or ice chips, but they wouldn’t allow me to have anything. I really just wanted to rinse my mouth out. The doctor who came to see me next was a hospitalist who had been on service for a lot of hours! I remember how tired she looked, and she kept apologizing for being so tired. Wish I could remember how many hours she’d been on, but I do know that it was more than 24! She was very nice… She first mentioned the possibility of an NG tube to drain the contents of my stomach, but then when she asked me about the vomiting and learned that I hadn’t been vomiting prior to coming to the ER and had only vomited twice while there, she said the NG tube wasn’t necessary. Apparently the PA had told her that I had been vomiting all day and wasn’t able to stop. I felt relieved knowing that I wasn’t going to have the NG tube placed. Her plan was to hydrate me and start me on dilaudid. Up until that point, the only time I’d ever received pain medication in my life was after I had the tumor removed. I didn’t know anything about medication overuse headache, formerly called “rebound headache”, but this was the treatment they were offering me. I had not overused any pain medication prior to the ER visit that would have led to medication overuse as the cause of my intractible headache. “Rebound” has never been a part of my headache diagnosis, and I am glad for that. But at any rate, I was started on dilaudid to try to break the headache. Because narcotics like dilaudid only mask the pain as opposed to aborting the actual cause of the migraine (which is what the triptans do), I continued to have the throbbing. Sure, it was a little more dull, but it was still there, and it was upsetting me that even on strong pain medication, I still had this stupid headache. Now I felt loopy, but was still in pain.

At around 5am the next morning, I saw a neurologist for the first time. He said that actually, he was still at the hospital when I came in the night before, and if they had paged him then, he could have seen me and straightened some of this out a lot sooner. Well, I don’t think the PA really felt much like helping me, to tell the truth! He ordered an MRI. In the meantime, a bed opened up, and I was transported up to a regular unit. Upon arrival to the unit, one of the nurses started flipping out and saying that she couldn’t take one more patient. Another nurse nearby said that she was taking me – that the other nurse was not getting a new patient. Later, she apologized to us for the other nurse’s behavior, and my mom said to her, “It’s okay – I don’t think we would have wanted her anyhow!” haha… We never asked for much and didn’t want to be a bother, but it was nice to have a kind nurse and not someone who was very outward about considering us a burden!

That morning, I was taken to the MRI. I remember them reading me a consent form and stating that I needed to sign it. I was so loopy still from the dilaudid that I was having a hard time even seeing the form to sign my name. They asked me what type of music I wanted to listen to while I was getting my MRI, and I said I wanted to listen to classical music. I remember later regretting that as I was stuck in the machine – whatever classical music was playing was very generic and had a very off-key flute! I remember laying down on the scanning bed and having the big plastic part that slides down over the head to keep your head still put into position. I wasn’t scared at that point, but I think I was almost in shock from how much had happened in the last 9 days.

Later that afternoon, I was back in my room with my parents. My dad had actually sat down on the floor between the wall and the bedside table as the room was cramped, and my mom and I kept telling him to get up! We didn’t want anyone walking in and seeing my dad sitting on the hospital floor. haha I remember my roommate talking so loudly. I was so oversensitive to any stimulus at that point that every sound made me feel nauseous. The neurologist came in with two other doctors to give us the report of the MRI, and I remember my dad scrambling to get up off the floor as he was sort of stuck between the bedside table and the wall. My mom and I were of course mortified, but now it’s a funny story when we remember it! The neurologist said that my MRI was fine – that I had some “freckles” on the brain, but that if you scanned any person’s brain, there were bound to be things that would be abnormal. He said that there was a possible cyst on the pituitary, but this wasn’t anything to worry about and not the cause of the headaches. He suggested a follow up MRI in about 6 months. I later learned that the “freckles” he saw were a few of the nonspecific white matter lesions that now have been connected to migraine, although the real cause and implication of them is still unclear. The only other lab value of note was a slightly elevated thyroid level – I can’t even remember which one. He then said that since I didn’t have a brain tumor, there was nothing more he could do for me. He wrote a prescription for a 10-day supply of dilaudid and for a steroid taper. He then said I could follow up with him or just go to my family doctor. He was very abrupt, and he didn’t stick around to answer questions. Instead, the doctor with him, which I suspect was a resident, stayed after to actually write the prescriptions. While the neurologist had been very flippant over the MRI and lab results, the resident showed much more concern, urging us to follow up and get these things checked again – especially the thyroid levels. He answered a few of our questions, and then I was discharged.

Once I got home, we called my family doctor to give him the update. He told me to throw out the dilaudid so that I wouldn’t risk getting rebound headache, so I did throw it away. He didn’t have any other suggestions for now. I missed a week of school, and then my parents took me back to college. The next 6 months were very stressful for me. I had always been a straight A student, and I was having a hard time focusing on classes and practicing piano. I spoke to my parents on the phone quite a lot. I felt incapacitated by the pain many days. Because there was no clear prescription that I should take, I mainly just didn’t take any meds – and relied on ice packs and rest. I spoke to my family doc on the phone from time to time, and he always offered sympathy that things weren’t improving, but he didn’t have many ideas for what else to do. He suggested that I see a neurologist, and that summer, I went to my first neurologist…

…To be continued…

Hello and Welcome!

Hello and welcome to my blog! I am a twentysomething female who suffers from New Daily Persistent Headache and Cluster Headache. Even though I’m blogging anonymously, those who know me will probably easily be able to identify this site as mine as obviously my story is going to be unique to me. All I ask is that if you’ve found this site and you do know me, please keep me anonymous! Also, please leave a comment or send me an email at paininthebrainblog (at) gmail (dot) com so that I know you’ve stopped by! This blog will contain some of my own personal medical information, so even though I know I’m publishing to a public domain, I would appreciate it if anyone who does identify me would act sensitively in a way that you would wish to be treated, were the roles reversed! Thanks!

And now all of that aside – I’m very excited to be starting this blog! A little over 6 years ago, I got a headache that has never left that was later officially diagnosed as new daily persistent headache. And then a little over 3 years ago, a second headache type was diagnosed: cluster headache, which, as time went by, became diagnosed as chronic cluster headache. Both are rare headache types, but thanks to some very proactive people with clusters, we have sites like ClusterHeadaches.com, OUCH US, and OUCH (UK). (OUCH stands for the Organization for Understanding Cluster Headaches, although with a slightly different title in the US and the UK!) Unfortunately, aside from some brief descriptions and some journal articles, there is very little information out there about new daily persistent headache (NDPH). Hopefully by sharing my story here, I will especially be able to reach out to others with NDPH as they currently have no “home” on the internet.

Since it has been over 6 years from the start of my headache journey, I felt that perhaps now is the time to share my story in an attempt to offer help, support, and resources to others who are suffering. I plan to start at the beginning and post installments about my headache journey, and once I get the history caught up, I’ll obviously continue with my day-to-day life. I’d like to stress that headaches really are such a small part of who I am – the big picture of me includes so many other things – but since I started this blog expressly to discuss my headache journey, I won’t really be focusing much on the other things, except as they relate to my story! It seems like most of the time, I’m minimizing the role and impact that headaches have on my life, but this will be a place for me to focus entirely on that role and impact, and I’m actually looking forward to having a place to do that!

While it is merely a start, I’ve included some links that I hope are helpful. I’ve listed some of the major headache centers in the US, UK, and one in Singapore, and I’ve also created a links list of headache resources. I’m sure there are so many more links I can and hope to include, but this is just a start! For the time being, I’ve linked to headache centers as opposed to individual headache specialists, but as this blog grows and develops, I hope to include more resources, including individual physicians that specialize in headache. If you know of an excellent center, physician, or headache resource that’s not on my list, please leave a comment or send me an email. I will definitely consider all recommendations for inclusion on my list.

So I suppose that’s it for my welcome! Thanks again for stopping by, and I hope you find my story interesting and maybe even a little helpful! If you don’t suffer from headaches, then maybe reading my story will help you to better understand someone who does! Either way, I’m happy to be sharing this with you. Take care!