Doctor Burnout.

I know it's been a while since I posted but for some reason I just couldn't get myself to write down anything. After I started increasing the Topamax and Vivactil I kind of went into hermit mode and pretty much all I've been doing for the past few weeks is sleeping. I'm not over exaggerating, I would wake up, take my meds, be awake for an hour or two and go right back to sleep, wake up, stay awake for a few more hours, and go right back to sleep, etc etc. I've been having other problems with the medication increases aside from being put into a sedative stupor so when I went to my monthly appointment with my headache specialist he decided to drop back down the Vivactil and by request if my headache frequency starts to increase we're going to wean off of it completely and back on Effexor XR which I had the best results with but my insurance stopped covering for a while. They now cover the generic extended release.

Right now though I'm just feeling a bit crabby or maybe melancholy is a better word. I have a bunch of doctor appointments coming up and I'm just so burnt out on having to go to doctors. I'm tired of being poked and prodded. I feel like a science experiment rather than a regular person. A few weeks ago my stomach started swelling and I've been going back and forth with trying to figure out what the heck is going on, I thought it was three different things and tried fixing all three and.. nothing. It just keeps getting bigger and bigger, it looks like a pregnant stomach and it's starting to feel embarrassing because to an outsider it looks like weight gain but it's not. I can't exactly explain that to every person that looks at me though. I finally went to my regular doctor who pressed on my stomach in two spots and said it looked normal. I had to tell him four times that this was NOT my normal stomach before he decided to order a sonogram. I swear, my PCP is the biggest asshole ever. Just because I am fat does not mean that my stomach is normally rock hard and round-ish. Fat is squishy, swollen-ness is not! He also didn't notice that my blood pressure was very high even though I'm on a beta blocker to reduce my heart rate. Could the two be related? Who knows?

So I'm uncomfortable, I have a doctor's appointment on Friday and a sonogram appointment on Monday. Then I finally have to see a pulmonologist on Tuesday because I've been having asthma attacks like crazy for the past few weeks as well. OH, and to top it off on Wednesday I have to finish a root canal. Nooo more. At least I have something to look forward to, on Saturday I'm leaving on a road trip to Florida and I'm stopping in Savannah for a night or two. I just can't wait for the next 8 days or so to be over with.

I apologize for how whine-y this post is. I just needed somewhere to vent.

Beware, A Big Headache Is Coming

I just saw this article from the Wall Street Journal (article) and I thought it was extremely interesting, it talks about the medical world now trying to catch migraine before they start and how 30% of migraineurs have signs that an attack is coming. I wish that I was part of that 30%, this way I would be able to medicate sooner but usually I don't have any signs until the pain starts. The one thing I have been able to tell though is even if the pain is only mild I can sometimes tell if it's going to end up being a severe migraine in just the beginning stages but that's not every time.

The article also talks about keeping a log and I think I have mentioned on here that I have started one since I was discharged from the hospital on Friday but so far I have not been able to make any sense of it. I know it hasn't even been a week yet but nothing is the same except that my migraines seem to start in the afternoon but have been starting earlier and earlier as the week has gone on. I think the horrible, thobbing migraine I had Monday and Tuesday may have been started by blasting my music in the car too loud and screaming along but I didn't do that on Saturday or Sunday so what happened those days? This log thing is already frustrating me.

Anyway, I liked the article.. I'll just finish with that.

Battle Wounds.

Well, I guess I know for sure now that I should listen to the warning labels on my medication bottles. I had taken the benadryl/compazine/DHE combo and about two hours later I was really dying for something sweet so I decided to hop in the car and run to the McDonalds drive thru for a McFlurry. It seemed like a relatively good idea at the time since it's in the neighborhood and only a few blocks away, and I wasn't feeling drowsy or loopy AT ALL (otherwise I wouldn't have gotten behind the wheel) but my side view mirror now bares a battle wound from smacking into the drive thru window.

It could be that my medication had absolutely nothing to do with this and I just wasn't paying good enough attention to how close I had gotten to the window, however, I have gone through this same drive through many times for coffee and have managed to never actually hit anything so I'm going to go with maybe this was some sort of divine intervention trying to give me a heads up or a warning about driving when I'm not supposed to be. Thank god it was just my mirror and not an actual person. The bottle of compazine does have a warning label on operating heavy machinery so I guess it's there for a reason. Absolutely no more driving if I have any of that in my system. I just feel bad that my car now has a scratch because of my own stupidity, but at least I had already decided to keep it at lease end otherwise it may have ended up costing me a bunch of money to fix when handing back the car.

Lesson learned, I guess.

St. Teresa de Avila

This is the bracelet that I wear every day, St. Teresa de Avila is the patron saint for those who suffer from headaches. I'm not exactly sure if it has been doing me any good lately but it makes me feel better to wear it. The funny thing is I'm not even very religious. I just feel like I need someone or something watching over me or helping me in a divine way because medicine alone hasn't been able to cut it.

I'm not having a good day today. Last night a moderate migraine turned into a massive throbbing so I did the benadryl/compazine/DHE injection like my headache specialist prescribed when I left the hospital and it didn't work. I had just done this on Saturday and it worked on a milder migraine but I guess this one was too far gone. I had trouble sleeping because of the throbbing, and woke up feeling just as bad as the night before. As soon as I could I left a message for my headache specialist requesting a call back but he was off today so I didn't hear from him until late afternoon. The resident at the hospital wrote out the prescription for the DHE wrong, it said no more than 3x per week instead of per day so I've been holding off when I could have been taking additional doses to see if they would work.

My headache specialist mentioned that when I see him at my next appointment on Monday that we're definitely going to have to adjust my preventive medications and I knew that was coming, I do hope that doesn't mean I have to wean off/on any new medications because that process is really frustrating. I'd rather just increase the dosages of the medications I'm already on. I'd also like to discuss the possibility of trying botox injections instead of lidocaine the next time I get trigger points.

I've been keeping a headache log but it's just so pathetic, I have not gone one day without a headache since I started it on Saturday and I often have to make multiple entries in one day.

Migraine Anxiety.

When I joined the National Headache Foundation I was automatically signed up for a subscription to HeadWise magazine which I just got in the mail the other day. It's actually pretty cool to read something soley devoted to something that's so important to me and there's a lot of new, interesting information inside. I definitely think it was worth the $20 that I paid to join the NHF. I also 'liked' them on Facebook so their new articles show up in my news feed all the time. The other day they posted on article on 'How to Manage Headache and Migraine Anxiety' which can be found here: http://headwise-qa.venturality.com/Articles/Lifestyle/How-to-Manage-Headache-and-Migraine-Anxiety-1

I thought the article itself was pretty interesting because I hadn't thought about how much the anxiety of not knowing when the next migraine will hit was affecting me, but as for the actual advice.. I'm not so sure the steps listed would help me but maybe someone else out there will find some solace. I think mainly I need to learn not to focus so much on them, and to stop making decisions based on if I may or may not be in pain.

College and Babies.

I am super excited right now because I've been looking up a lot of information about the University of Central Florida. I intend on enrolling once my mom and I settle down in Orlando. I probably forgot to mention that part, we're moving once our house here in NY sells. Did you know that 23% of the student body is over the age of 25? Thank the lord! At least I won't feel freakishly old walking around campus. I'm starting to feel really self conscious about my age now when I'm on a college campus, like all the little 18 and 19 year olds have a secret ability to be able to tell that I am slowly closing in on being a decade older than them and that I don't really belong there. Knowing that there's a huge older population at UCF makes me feel a lot better.

Being in the hospital really brought home for me the fact that I need to go back to school no matter what. I was going to go back to school this past fall for nursing but when my hand injury started I withdrew from all my classes because I wasn't sure if I'd be able to keep up with all of the work because of the typing/note taking involved. Watching the nurses in action and knowing how much of a vital part they are in your hospital stay really put a fire under my butt. I really want to be a nurse. I had several very good nurses in the hospital this time around (a few I wanted to punch in the face as well but I won't go there) and one in particular went above and beyond for me and it made such a difference. I want to be that for someone else. When I think back about the experience of my grandmother dying, the nurses who visited at home played a huge part in the entire process and my mom and I probably wouldn't have remained sane if it weren't for them. I just want to touch/help someone in the way my life has been touched by nurses. I also just love the idea of studying medicine. I love finding out why things work the way they do.

How do my migraines play a part in this though? Their unpredictability has pretty much banned me from working any normal full time job because I'm no longer considered reliable. I just cannot tell you when my next migraine will be, or how long it will completely disable me for. How am I going to be able to get through school? I want to go for a BA in Nursing, the first two years will be the 'easier' part of the program, meaning most of the core classes for any BA and then the final two years are basically hell. I have no idea at all if I will be able to get through this. Part of me wonders why I should bother trying, but the other huge part is screaming "You will never know UNLESS you try.", and I cannot sit on the sidelines forever. Maybe the first year will be rough. Maybe during that time I could find an awesome medication the greatly reduces the number of migraines that I have. Who knows what could happen? I can't just stop living because of my illness.

How do I even intend to be able to work if I in fact make it through and graduate? I'm not sure. I've figured maybe I could work only two shifts per week, or work in a doctor's office where the hours are shorter. I also have my hand to worry about along with my migraines.

And that's how I'll lead into the other issue that's just beginning to worry me a little bit.. babies. I don't have a boyfriend, but at some point in my life I would like to be married with children and fulfilling the whole American dream thing. The only thing that seems to stick out in the articles that I've been reading lately on migraines is that there isn't a lot of options out there for pregnant patients with migraines. So I'm assuming that means most of my medications would not be safe to take while pregnant, most definitely not the muscle relaxers, pain killers or the DHE45 which are the abortive meds that I need. PLUS, we have no idea how my body would react to pregnancy and it could cause even more/worse migraines. I would be begging them to take the baby out. Does this then mean I won't be able to have my own biological children? Since I was looking down the road of adoption before (long story), this is obviously not a problem for me and I am completely open to it but I always intended to have at least one biological child eventually. I never thought that option would be taken away completely.

So if I can't (or choose not to because of the issues relating to) have children naturally how exactly do I find someone to marry? Do I tell them ahead of time? Do I wait and save that little gem for the honeymoon? Like, "Oh, btw.. sorry honey but I forgot to tell you but I don't think I'm going to be able to give you that baby that you wanted.". I know it's a lot to think about considering I am young and single but eventually I have to settle down and it's a very important subject and just another subject that tied up with my migraines. How exactly does that happen? I should be able to have just a few things in my life not controlled by this.

I'm confused, I'm feeling slightly angsty and still slightly excited about the college thing.

Welcome To My Mind.

Hello to all of you out there wandering around in the vast expanse of the internet world. This is my very first post, my first attempt at putting my thoughts down and making sense of all of it so I can't promise it will be very interesting or really flow all that well. It's only polite to introduce myself, my name is Jennifer and I'm 25 years old from the New York metro area and I have been suffering from Chronic Daily Migraines for just about two and a half years now. Unlike a lot of migraineurs I did not start having them in childhood or in my teens, and I can actually pin point the exact date they all started. I was adjusted by a chiropractor who was treating me for lower back pain, he adjusted my neck and I walked out that night feeling a funny pain in the back of my head and.. it snowballed into something worse and never left.

I'm not sure whether or not it's good that I can look back and see exactly where and when they started, in one way it gives me an entity to blame other than some higher being but on the flip side I feel the most angry at myself for going to the chiropractor to begin with. I wonder how different my life would be if I had just decided to leave my back pain alone, or had I requested that my neck not be adjusted, just anything to change the outcome. Where would I be right now if I didn't have chronic migraines? It has changed so much of my life, so much of who I am as a person.

Before they started I was just beginning to blossom as an adult, I went on my first international trip by myself and had a blast, I attempting to claw my way up in the company I was working for.. things seemed to be going relatively well. And now? I'm unemployed, disabled by the migraines and an injury to my hand. I barely ever make plans to do things any more because I'm afraid I'll have to cancel them because of a migraine. I feel like I live my life on egg shells, always afraid to move in any direction because of the fear and anxiety that surrounds my condition.

Lately I've been getting into researching migraines and talking with others online who are in the same boat, I had no idea that there were so many other people dealing with the same problem and feeling the same things that I felt.. or literally just being in the same position. Yesterday while I was still inpatient in the hospital for migraines I spoke with someone on Facebook who was inpatient as well and receiving the same medication that I was. I think migraineurs have a tendency to feel very alone because of the stigma that surrounds the condition. We get told to take a tylenol, it's just a headache, why can't we just keep functioning like everyone else? So we just fold up deep inside of ourselves and when we finally find a way to communicate with a person in the same place as us we cling onto it like a small beacon of hope that maybe we're not so alone as we feel.

Anyway, I'm trying to get involved in a bunch of projects right now. I joined the National Headache Foundation, and the American Pain Foundation. I've been looking for seminars or similar events to attend in New York or nearby states that maybe would provide me with more information about the headache world right now. I also just ordered 'A Brain Wider Than The Sky' by Andrew Levy and I'm going to Barnes & Noble tomorrow to pick up Migraines by Oliver Sacks. I just want to soak up as much information as humanly possibly. I guess I believe if I can understand why I have them and where the pain comes from it will make it a little bit easier to deal with. I also just like understanding why things work.

If anyone out there in the giant vastness has a recommendation for something to get involved in, or a book to read or anything like that feel free to shoot me a message.