Aaahhh, vacation...

Vacation was WONDERFUL! I finally had time to relax, spend time with my husband, work out on almost a daily basis, and eat amazingly delicious and healthy food. Now that I'm home, I'm going to try my best to keep up with the workouts and healthy eating. In fact, I made some fresh juice today with cucumber, celery, carrots, apple, lemons, cinnamon, ginger and honey (all organic). YUM.

The bad part is, I still had headaches while away. Not nearly as many, but near the end I got a migraine from a tough hike. Luckily, two Butalbital helped. Then I got it again near the end of the next day and have had it all weekend long. I'm trying to fight this one out without drugs, and luckily it's not a very severe migraine so I've still been able to function. I'll probably end up taking drugs so I can make it to work tomorrow.

I'm just thankful I had a chance to appreciate God's beauty this past week. :)

Book Review: The Migraine Brain

A while ago I read The Migraine Brain by Carolyn Bernstein, M.D.

The book was a great overview of migraine and had some neat information, such prodrome symptoms to look out for that I hadn't thought of before. I've paid more attention and noticed that before I get a migraine, my writing is off. Like when I am at work and I write myself a reminder on a post-it note, I'll cross my l's like they're t's, add extra humps on m's, completely misspell obvious words, etc. Sometimes if I think I'm getting a migraine, I write song lyrics on paper (so I can write fast without thinking) to see if I slip up any.

Another thing the book said to do is to take a picture of yourself when you have a migraine and then take one when you're migraine-free so you can see if you have facial changes. I did this, hoping I could show my husband the migraine one and say, "Be nice to me when I look like this." The scary thing is, I noticed my right eye drooped in the migraine picture, but when I took a picture when I didn't have a migraine or even a noticeable headache, my eye still drooped. Perhaps my face is permanently disfigured? Scary thought. I now use my eyelash curler a few extra seconds longer on my right eye no matter how I'm feeling. :)

Overall, The Migraine Brain is a typical migraine book, but it's definitely easier to read than others because the author is a neurologist, woman, AND migraine sufferer.

Quick update on me...my flu thing is still hanging around and now I have ear/nose/throat issues too, which of course triggered a migraine. I'm on antibiotics and am hoping they'll make a difference. I've been missing way too much work and am nervous about that, but so far my boss has been really understanding and has even let me work from home some. My husband and I are taking a week-long vacation to the mountains soon, so I'm praying I'll have some headache/migraine-free days during that time. I need a time out from these health issues before I go crazy (or crazier)!

By the way, I've been getting a lot of e-mails and blog comments lately from people going through the same thing as me. Thank you so much for writing!! There are too many of us out there, but if we all keep fighting and praying, we'll eventually find something that will get rid of our headaches/migraines. And if we don't, at least we're still living our lives as best as we can - and we have each other! :)

I missed you guys!

Hello again, friends! I'm back to blogging, although I'm going to start slowly. One, because my relaxing week-long mountain cabin vacation hasn't happened yet, thanks to my husband's lovely job, so I don't feel well-rested yet and won't until late next month when I can finally have time off. And two, over the last week I've had some sort of flu that went around my office, and I was able to work from home, but I was still working so the rest didn't happen. After seven days I'm not better, so I might go to the doctor tomorrow to see what's up. The sickness started after stopping Gabapentin (Neurontin), and even though I stopped gradually, it could possibly be related. Regardless of the cause, I feel like crap, so I'm going to take it easy and try not to think or do too much!

So that's how I am right now. More importantly, how are YOU?

Summer Blogcation

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Image by Storm Crypt on Flickr

I've decided to take a break from blogging this summer - let's call it a summer blogcation. My therapist told me to take a break long ago, but I didn't feel the need to. However, the other day my husband asked me to; not in a mean, demanding way, but in a "I care about you and think you should give yourself a break" kind of way. I finally caved and agreed. Here are my reasons:

• I need to reduce stress. Not that blogging is stressful - it's not; but it's one more thing I "have" to do. Plus my day job is more than 50% writing and I get tired of it.
• Headaches are ruling my life. I had two days in a row of no head pain last week, and it's the first time that's happened in months. All I think about is the pain, and I'm constantly trying to find ways to stop the pain. I spend a few hours a week doing research, reading other headache/migraine bloggers' posts and writing my own, and while it's not that much time, it is time I'm thinking about headaches and migraines. I need to take a break and focus on anything but that. Which brings me to my next reason...
• I'm going to replace the time I spend blogging and reading blogs with something stress-free and non-head-related. This could be painting, biking, cooking new recipes, shopping with friends, and spending more time with my husband. The options are endless!

Please know that I WILL be back, probably in August unless something drastic happens that I can't wait to blog about. I'll try to respond to comments to my blog, but I'm not anticipating many. Thank you for not only being a reader of my blog but for being a FRIEND. I hope you all have an amazing summer and improved health!

P.S. I hate to make this a long post, but I want to close some loops before I take my blogcation.

• Elimination Diet: It wasn't too helpful for me, but that doesn't mean it wouldn't help others; in fact, I know it's helped others. I have a few questionable foods that I'm going to test again later, but in general I've added back most foods and am no longer restricting my diet, at least not as it relates to migraine triggers. I just finished "Animal, Vegetable, Miracle" by Barbara Kingsolver and it has inspired me even more to stick to organic foods (as much as possible) and maybe even grow my own someday when I get out of this condo. I cannot recommend this book enough!!
• Occipital Nerve Block: Didn't work. At all. AND, apparently 5% of women have spotting and cramping from the steroids for about a month. Yes, I would fall into that category. I didn't see anything online about it and was getting concerned, but the doc filled me in during the follow up. So now it's online. Be warned.
• Drugs. I stopped the Zonisamide because of the daily stomach issues, and I decided to give up on preventatives (I've tried almost all of them, seriously). But my doc recommended Gabapentin (Neurontin) so I figured I'd try ONE more. So far the dizziness and drowsiness are killing me but I'm trying to stick with it. My stupid insurance denied coverage of Treximet so my doc said I could try Imitrex (generic; apparently my insurance doesn't even cover Imitrex; and it only covers four generic pills a month - jerks) along with 500 mg Naproxen. I just tried it today and it was so not the same. I still have Aleve, Butalbital and Toradol if I have migraines, but they're hit or miss. Other than that, I'm free of meds except for topical acne medicine.
• TMJ mouth guard: no luck for headaches yet although my jaw pain, which I only get when I grind my teeth at night, is better. I'm still wearing it 24/7 except for eating.

And no, I will not be on the sailboat in the picture during my time off from blogging. Sadness!

National Headache Awareness Week 2010

National Headache Awareness Week 2010 takes place June 6-12. The National Headache Foundation has a wealth of information on its website including activities taking place across the U.S. during the week, free newsletter sign-up and topic sheets. The NHF will also be posting answers (provided by headache experts) to questions submitted by website visitors.

While we headache and migraine sufferers are all too "aware" of the impact chronic headaches have on our lives and the lives of those close to us, I think it's important to spread the word and educate non-headache-sufferers. Sometimes I feel I share a little too much and sound overly negative or just plain boring, but people need to know that we aren't lazy, hypochondriacs, drama queens or kings, or crazy. We're in severe pain. Awareness could also result in additional funding for research and better health insurance coverage (please allow me to dream).

Happy National Headache Awareness Week. Spread the word!

Occipital Nerve Block

On Friday I had my first occipital nerve block. *Update - I'm referring to the procedure described below as an "occipital nerve block" which is what the doctor who performed it (an anesthesiologist), called it. If you read the comments below, you'll see that "occipital nerve block" could mean different procedures to different doctors. As always, please talk to your doctor and do not make medical decisions based on my blog posts. Thank you!* If you're not familiar, here's a description in Q & A format (note that I do not go to this medical provider; it was simply the best description I found via google). Forgive me if this explanation is not entirely medically accurate - it was difficult to tell what exactly was going on during the actual procedure because my head was turned away; plus the pain clouded my thinking!

My husband had to take me to the appointment because I wasn't allowed to drive home. Once I got there, my vitals were checked and I went to the first room. I filled out a general headache questionnaire and then a nurse (not certain about the title) inserted an IV in my hand "in case" they needed fast access in case something went wrong. Nice. Then the anesthesiologist came in and had me sign a consent form. I had to replace my shirt with a lovely hospital gown, and then they had me go to the procedure room.

Talk about intimidating! In the procedure room were three different people with surgery masks, aprons and hair covers. A tech had me put my hair up and she put a hair cover over me. Then she had me lie down on the exam table in the middle of the room and turn my head to the left because I was having my right side done. The door and all the action was on the right, so the only thing I saw the whole time was the X-ray tech making adjustments to the machine above me. After what seemed like forever, the anesthesiologist came in the room and I couldn't turn to see him because they already had me positioned properly. He marked the spots on my neck with a marker and then covered the entire right side of my face and neck with a sheet of plastic, I'm guessing so germs wouldn't get in the area during the procedure.

Finally, the shots began. The first was Lidocaine which numbed the skin. Then the real pain began. I couldn't feel a lot on the surface, but from what I could tell the anesthesiologist inserted three needles into the appropriate spots, which hurt pretty bad - not from the needles penetrating the skin but from them going into my neck muscles where many of my headaches seem to start. The sudden stabbing pain plus soreness made me want to groan in pain but held it in. The tech (not the X-ray tech but another one) was holding my hand the whole time, and at this point I gave it a slight squeeze and took a deep breath. Next the anesthesiologist said it was time for the injections. The pressure was also fairly painful, but it was quick. Finally it was over, and I was helped into a wheelchair and taken to a recovery area.

One of the nurses gave me a soda (I asked for Sprite since I've eliminated caffeine and aspartame, which ruled out the other options. I've added citrus back to my diet and found that it is not a migraine trigger, thank goodness). After sitting a few minutes and changing back into my shirt, the nurse removed my IV and walked with me to the waiting room where my husband was patiently waiting. I was dizzy and my balance was thrown off because the right side of my head/neck was numb, so I asked him to stay close to me. We were out of there in an hour-and-a-half, but I'd guess the actual procedure took no more than five minutes.

So has it worked? Well, I'm not sure yet. On Friday it hurt to move my head at all, and yesterday I felt like I had whiplash. I've been icing it and resting, and it's not nearly as sore today. I still am having slight headaches on and off, and they still seem to be all over my head. The effects of the steroid are usually felt three to five days following the procedure, so I'm patiently waiting.

Here's a picture of my neck. Note that the purple is the marker, or at least that's my guess since there was some purple on the band-aids when I took them off.

I'll do an update soon on whether or not my headaches have improved. Here's hoping they do!

Migraine Infographic, plus Migraine Twitter Chat

CureTogether members shared symptoms and treatments of migraine, which led to the following infographic:

One treatment I haven't tried in the "Surprisingly Effective" section is morphine. I don't plan on trying it any time soon, but it's good to know that there's something out there I haven't tried that has worked for others. CureTogether is coming out with other infographics, including one for depression.

I have a quick news item, too. For those of you on Twitter, Diana at Somebody Heal Me is starting a weekly Twitter Migraine Chat. The first one is Thursday at 8 p.m. CENTRAL time. Click here for details. I'll be chatting tomorrow as @drummerheather. Hope you can join us!

Treximet

*Whew* it's been rough lately. I'm still going off Zonisamide gradually and I have another week left before I can cut it completely. I've been crying at the drop of a hat, getting sick to my stomach every darn morning, and cursing like crazy which is so not like me. I won't directly blame the medication and/or withdrawal from it, but something is going on (and NO I'm not pregnant).

I had 24 days of headaches and four days of migraine-level pain in April. This past week I had to try Treximet for the first time - at work. In a perfect world I'd be able to try it at home to test it out first, but I had a migraine hit me suddenly and didn't have a choice. As with all triptans for me, it got way worse before it got better...but it did get better and after about two hours I was able to function again and I even finished the work day. But I have zero confidence in triptans because every one I've tried in the past has worked a few times and then stopped working or even made my migraines worse. I know Treximet has the NSAID component, but I'm trying to make my tummy happy by avoiding NSAIDs.

Also, some food for thought: check out Diana Lee's blog post on medication overuse headache. Here's an excerpt:

"...some researchers believe one type of migraine-specific medicine, triptans, is more likely to cause recurrent migraines rather than just recurrent generic headaches."

I only received two samples from my doctor so I have one remaining, but I don't know if I should try and get a prescription or not. Since it's my only "emergency" med that works (for now), I probably should. It really did save me the other day, but I don't like the thought of them causing recurrent migraines!

P.S. - you all have been giving really insightful tips/thoughts in the Comments section lately. Check them out if you haven't yet; you may benefit from some of the ideas, particularly in the last post. And THANK YOU for taking time to leave comments. You all rock! :)

When Medications Fail

My biggest fear came true last week when my "strong" medications, Butalbital (Fioricet) - for painful headaches/migraines and Ketorolac (Toradol) - for the super kill-me-now migraines, no longer worked for me. After managing to avoid these drugs for a month, sticking to Aleve instead, I couldn't stand the constant headaches anymore and finally gave in. No relief.

Last weekend, I had a horrible migraine that lasted three days. It may have been from the chocolate I added back to my diet (although I started adding it a week before I got the migraine) or just a bad sleep schedule or let-down migraine following a week of work stress. Either way, I had plans to attend the Azalea Festival in Wilmington, NC with friends Saturday, and I was not going to miss it. I took four Butalbitals (as two doses - I normally take only one or two pills), which made me dizzy and brought the migraine down a few notches. I was nauseous and in pain, and had to hold my husband's hand so I wouldn't lose my balance - particularly on the section of cobblestone streets - but I managed to survive it and have an amazing time!

My next neuro appt. wasn't until April 29, so her physician's assistant saw me today. I've been having stomach issues that have now become daily, as well as general dizziness and random rapid heart beats - flu symptoms I guess, but they've been going on for weeks if not months. The only thing I can think of that would be causing it is the Zonisamide (Zonegran generic), and since it obviously wasn't helping my headaches a bit, I'm weaning off it. My blood pressure was really high today, which could be from the Zonisamide and maybe would explain why I'm feeling so crappy. Also, the fact that it suppresses your appetite combined with my migraine diet contributed to me losing 11 pounds since Feb. 9, which is cool for most people but not good for me when there's not much to me as it is!

I asked for an "emergency" medication and the PA gave me Treximet samples. I've taken Imitrex and several other triptans with no luck and in fact bad side effects (go figure), and I shared this with the PA, but she said Treximet, which is combined with naproxen, might be different.

The next thing I'm going to try is an occipital nerve block, which I don't have any links for because I haven't had time to research it yet. I have a consultation Monday and will find out more details then. Also, I have a TMJ checkup Friday. Doctors, doctors, doctors...

Pain is Serious!!!

I'm sorry, but I'm going to be a bit of a drama queen in this post. You've been warned.

Last night, my husband did the unthinkable. I was totaling my headaches for March based on my headache calendar, which I do at the end of every month. I had 29 headaches. I shared this with my husband, which I usually do because, well, if you had more than 20 headaches each month, wouldn't you want the person closest to you to know about it?

His reaction? He automatically shook his head to the left and right, as if to say, "no, that's impossible." Then he realized what he was doing and stopped. I asked him to explain why he did that and he wouldn't talk. (He's not much of a talker to begin with.) So he started watching TV and I was sitting by him finishing some work on my laptop, but I wouldn't drop it, so I kept pressing him.

You don't believe me?!
Why the h*** would I lie about having headaches? What would that accomplish?
At the end of every day I write down whether or not I have a headache. It's not like I can make a mistake!

And on and on. Nobody seems to understand how debilitating headaches/migraines are. I told my husband how my  headaches have been maybe a 4-6 on a 1-10 pain scale where 10 is the worst, and once they get to the 7-10 range (this is just my opinion, and my own perception of my pain levels, not an official scale), I would have to stop all activities - including work - and stay at home because the pain would be too intense. I told him the pain seems to be getting higher and higher and it's getting closer to that point and that scares me. When I take medicine it's just a temporary fix for a few hours and then the pain is right back where it was before, and I've had zero luck with preventatives - make that negative luck if you count the side effects. I even said I've considered going to a hospital to see if they could keep me a few days and give me strong meds to try to break the pain cycle and see if that helps.

After all of that, I honestly feel that he still thinks I'm just being dramatic. How do I get through to him, and others I encounter on a regular basis?

(Side note - I'm aware that I care too much about what other people think, and I'm working on this with my therapist. ALSO - I should add that I have the best husband in the world. Pain is just something he doesn't have experience with, so you can't blame him for not understanding.)