Pregnancy and Migraines

Christmas ornament from my sister

I'm so happy to share some good news with you all - Jonathan and I are going to be parents! I'm 14 weeks pregnant and the due date is July 1, 2013.

This is actually a hard blog post to write. From reading some of your blogs, comments and Tweets, I know that some of you can't have kids, whether it's due to infertility, not being able to stop migraine medications for nine months, and various other reasons. Last May after my surgery I found out I have endometriosis, which can cause infertility. Soon after the surgery when I told my gyno that my husband and I were planning to start trying once I graduated in December, she warned me not to wait even that long because the best time to try is right after surgery when they clean out the endometriosis tissue. Needless to say, I was nervous about the possibility of infertility and although, looking back, it didn't take long to get pregnant, each time I got my period it was heartbreaking. That gave me just a glimpse of what some of you are going through, and I just want to say I'm praying for you and I'm so sorry if I or anyone else has ever been insensitive to you.

When I told my friends the news, many of them asked how my headaches have been...they know me well. I was hoping my head pain would have improved during the pregnancy, but it's actually been much worse. The only meds I've been able to take are Extra Strength Tylenol, Benadryl to knock me out, and Vicodin for the full-blown migraines. My doctor said I may be able to take Fioricet too, and I'm definitely going to ask for a prescription at my next appointment because I've had a lot of migraines. Just this past weekend I had a migraine for three days straight, even after caving and taking Vicodin, and it went away for a day but came back this morning. Now that I'm into my second trimester, things might improve, but I'm not going to get my hopes up.

I hope this doesn't come across as complaining. I'm SO thankful for the baby, and if I have headaches and migraines anyway, then I can handle a few more. Luckily I'm finished with school and only work at an office a few hours a week, and I'm planning to do freelance graphic design from home full time once I get enough clients. Not having to go out every day helps me deal with the pain and avoid taking medicine as much as possible. Also, I never threw up during the first trimester, I just had food aversions and nausea, so aside from the head pain, it's been a pretty good pregnancy!

I'll be sure to post updates, but War on Headaches will remain a headache/migraine blog, so I won't transform it to a pregnancy or "mommy" blog, don't worry! ;)

Book Review: Knock Out Headaches

Hi readers, I've missed you! Now that I've graduated and have a 2-year degree in graphic design (WOOHOO!), I've been able to catch up on reading some of your blog posts (for those of you who are also headache/migraine bloggers) from the past month, and I'm hoping to have more time to post on here. Of course, I'm also starting a freelance design company, Heather Hefner Design (shameless plug!), so no promises!

I'll do a more personal update in an upcoming post, but first I'd like to share a book review with you. This is a brand new book called Knock Out Headaches, by Gary Ruoff, MD. My review covers the good, the bad, and - unfortunately - the ugly.

The author of Knock Out Headaches, Dr. Gary Ruoff, is a founder of the Westside Family Medical Center in Kalamazoo, Michigan, and presently serves as Director of Clinical Research at that facility. His main research interest is pain therapy and management, including headache and acute and chronic pain. The book features a foreword by Dr. Seymour Diamond...I think we all know who he is (that sounds sarcastic, but it's not, I promise!). He's now being called the Headache Godfather.

The Good: Knock Out Headaches starts right off by acknowledging that headaches are not "curable." It's well-written and easy to read, but it also has sidebar sections that give more in-depth, scientific information. It covers types of headaches, migraine, triggers, treatments and medications, and health problems that typically accompany headaches. The back of the book includes a headache diary, anxiety rating scale, migraine disability assessment and a checklist to develop your own treatment plan. It's a good book if you have frequent headaches and/or occasional migraines and you want to read a book that doesn't contain outdated information. 

The Bad: If you've read other headache books, don't expect this book to be very different. It covers the basics and provides real-life stories. To my surprise, one of the stories didn't end with "and then we figured out that X treatment worked and the patient is now able to manage her headaches" (that's a quote from me, not the book, although it's definitely a paraphrase). I felt guilty that I was hoping for a story without a happy ending, like my own, and even more guilty that I was excited when I actually read one. This particular story doesn't have a happy ending, it just says that there's been some improvement and the doctor is optimistic. Unfortunately, the story starts by saying that it's an "extreme case." Dr. Ruoff also seems to indirectly blame the patient for not having much improvement, saying that it's like pulling teeth to get her to go to bed and get up at the same time each day or eat regular meals. Perhaps that's true, but it could be that she simply can't be helped, or it will take more time to figure out what will help, as seems to be the case for me and many of you. 

The Ugly: I do not want to write this part, but I have to be honest when I write reviews, so here goes... Near the end of the book is a section called "When Treatment Fails." Again, I was excited to find this section because it would address my situation. Near the beginning of the short section, it said, "In some cases, we will never know the answers, but through experience we have identified a few possible explanations." The first part may be true, but let me sum up the "possible explanations" to which he is referring: (1) When a lawsuit or disability claim is involved, so the patient may not get better intentionally or subconsciously. Same thing when headaches elicit sympathy or provide an excuse for not working. (2) When a patient is taking a narcotic regularly for another pain condition which causes rebound headaches that are impossible to control. (3) When headaches are part of deeper emotional or psychological issues which can interfere with treatment. These three explanations may be true in some cases, but to me they're a cop out and are insulting.

In summary, this is a good generic headache book and will be helpful to people who don't have chronic-level headaches and migraines. Knock Out Headaches is available for $15.95 on the publisher's website.

Disclosure: Spry Publishing provided me a free copy of Knock Out Headaches in exchange for me writing this review, but my review is unbiased. 

Shop Online and Give to National Headache Foundation

I blogged about iGive back in 2009 - check out the post here if you're curious. Since then, I've raised about $5 for the National Headache Foundation by doing my online shopping through them. I just log in and then go to the online store (usually amazon.com) through iGive's website, and it automatically gives a percentage of my purchase to the NHF. The retail stores pay for the donation, so there's no extra cost to me.

The problem is, I almost always forget to use iGive when I shop online. Luckily, I no longer need to log in because iGive has created a browser button that lets participating stores know that I use iGive and that I want the donation to go to the NHF. Below is a screen shot of my button (in Firefox). Update - I've noticed when I go on sites that are in iGive's system, the top of the page automatically lets me know that a certain percentage will go to the NHF or it will ask me to click an icon to activate the giving. This is even better because I don't have to remember to use iGive! Sweet! Having it up there should make it easier for me to remember to use it when I shop online. I can program the stores I want (amazon.com is already up there but that might just be for mine) and when I click on the button, I choose the store from the drop-down menu and it goes directly to the store's website.

If you want to give the button (they're also calling it a browser "app") a try, iGive is donating $5 to the NHF for each person who signs up and downloads the button by Cyber Monday. Just follow this link: http://www.igive.com/welcome/lp2/wr15.cfm?c=44422&m=650756.

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Random, but have any of you seen the TV commercial for mychronicmigraine.com? It's a website by Allergan that has migraine resources. What's cool is their tagline is "Don't live a Maybe life." Isn't that the best tagline for migraines? It's exactly how I feel, never sure if I actually will be able to make plans or attend events or even step outside because there's always the chance of a migraine that will keep me in bed. I know you all can relate.

Hope you all had a wonderful Thanksgiving! :)

Fragrance Free Zone at Church

Earlier this year I worked with the staff and pastors of my church to establish a Fragrance Free Seating Zone at all three services. They were completely on board with it and very supportive. They asked my opinion on wording and where the zones should be located. They even put a writeup in the bulletin requesting that the congregation limit the amount of scents they wear. Here's the sign at the service I attend (the contemporary service):

Small print says: "Please sit here only if you are not wearing any fragrances -
perfumes, colognes, powders, lotions, etc."

The seating area is in the back corner of the church, a few yards behind the regular seating (as I requested), and usually has two rows of chairs. For a while the only ones who sat there were me and my (sweet, supportive) husband. Since then, another couple has joined us. I know the husband suffered from headaches until he had back surgery (pretty sure it was back surgery), so I don't know if he still gets some headaches or if he or his wife is bothered by the fragrances, or maybe they're just being supportive. Occasionally some other people will join us. There are also times when the church is so full that the section becomes overflow seating, but usually people wearing heavy fragrance avoid the area. One time when all the seats were full I went to the "cry room" where parents and babies sometimes go and can watch the service via TV, but that room has bright fluorescent lights (and can get loud, obviously) so I try to avoid it.

Overall, this is a great move for our church and I'm so happy they took me seriously. It had been common for me to develop bad headaches and even some migraines after church because of all the perfume, and this separate seating has made a huge difference. If you're thinking of getting a fragrance free zone started at your church, GO FOR IT! :)

By the way, this isn't the first sign I've managed to get posted. See the bottom of this post. Lesson: it doesn't hurt to ask!

Free iPhone App from WebMD

I received the below press release from WebMD. It would be neat to try out this app, but I haven't had the time (I've been awful about time management lately). In fact, I haven't had time to do a blog post in a while (sorry) which is why I'm simply copying and pasting the press release below.

Just a quick pain update. I haven't been running as much (time management - see above) and my headaches and especially migraines have been a lot worse. I went to the mountains over fall break and while I got a lot of exercise, I also got an awful migraine and had headaches the rest of the time. I'm thinking the altitude change may have affected my head. Also I didn't bring my night mouth guard so that probably didn't help. So I've been trying to take it easy since then and so far this week hasn't been too bad. My lower back hurts more than anything...so now I'm afraid to try running again. Not sure what that's about.

Oh and one more thing - I just noticed this blog has 100 followers - WOW! Thank you ALL for thinking my ramblings are somewhat interesting. I really hope that I've helped some of my readers over the *five* (again - WOW) years I've been blogging!

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WebMD Launches Unique New Mobile App for Those Living With Chronic Pain

WebMD Pain Coach™ engages patients across seven pain conditions to provide helpful answers and motivation

New York, NY - WebMD Health Corp. (NASDAQ: WBMD), the leading source of health information, today announced its new WebMD Pain Coach™ for iPhone, a unique free mobile application for consumers and patients living with chronic pain. As the leader in mobile health, WebMD provides trusted health information anytime and anywhere with its mobile web and applications for consumers and physicians. The new WebMD Pain Coach™ app builds on WebMD’s market-leading mobile applications through a holistic approach that helps users create a balanced lifestyle.

WebMD’s new app is a mobile companion to coach consumers through daily health and wellness choices so that they can better manage their pain while living a healthy life. It offers patients a personalized experience by delivering daily physician-reviewed tips about managing their specific condition(s) to their mobile device. With the app, WebMD helps consumers take control of their lifestyle choices by enabling them to easily review their pain patterns so they can understand triggers, set goals and share progress with their physician.

“WebMD recognized that many who suffer from chronic pain have more than one condition, which is why WebMD’s Pain Coach™ uniquely enables tracking of multiple chronic pain conditions all within one app.  With WebMD’s Pain Coach™, users can track and view symptoms, triggers, treatments and goals on a daily basis, further monitoring progression,” said Dr. Michael Smith, Chief Medical Editor at WebMD. “WebMD Pain Coach™ is also a portable reminder and checklist for patients to reference when communicating with their physician at the point of care, enhancing patient-physician communications to help with health decisions and treatments.”

According to the Institute of Medicine of The National Academies, there are over 100 million Americans suffering from a chronic pain condition. WebMD Pain Coach™ provides tools and resources to help those suffering from chronic back pain, neck pain, nerve pain, fibromyalgia, migraine, osteoarthritis, and rheumatoid arthritis, with customized information based on their condition, treatments and lifestyle. 

In recent studies conducted by WebMD of its leading consumer and physician communities, both groups expressed interest in the ability to track pain through a mobile device to enhance patient-physician communication at the point of care. In a recent survey* of chronic pain sufferers who visit WebMD through a mobile device,  89 percent would use a mobile pain diary through a smartphone app at least weekly and 70 percent would be likely to use an app which featured relevant WebMD condition-focused content to help better manage and track pain.

Other key survey findings include:

• Approximately 40 percent of respondents felt very strongly that this type of application would improve discussions with their physician.
• Over 50 percent of respondents suffer from frequent or recurring pain and are actively treating their pain with guidance from a physician; 83 percent of respondents see a doctor; 50 percent treat pain with Rx medication; and 38 percent treat pain with OTC medication.

The physician survey** also found:

• 92 percent of respondents would prefer if their patients had an easy way to track symptoms between visits, with 65 percent noting a mobile app could allow their patients to easily track their chronic pain intensity and share that information during visits.

Similar to WebMD’s other leading health apps, WebMD Pain Coach™ provides contextual advertisements for the engaged user with ad experiences that are woven into the fabric of the app.  

WebMD Pain Coach™ features include:

Journal: The journal puts consumers in control of their lifestyle choices, allowing them to see patterns, discover potential triggers, show tangible progress through goal setting, share progress with their physician, and track to gain a measure of control.

Goals:  Consumers are able to browse and select physician-reviewed goals from five lifestyle categories related to their pain condition(s):  food, rest, exercise, mood, and treatments, or create their own goals. Each related tip can be viewed before selecting a goal, and the goal duration can be set from one day to one year. 

Tips:  Tips are delivered daily and provide consumers with a highly personalized experience to help them meet their specific goals. Tips are categorized by food, rest, exercise, mood and treatments and are physician-reviewed.

Library: The Library contains WebMD’s trusted physician-reviewed content relevant to the patient’s condition(s) and pain management. The Library contains hundreds of articles, videos, slideshows and quizzes, all organized within categories including: Living Better with Chronic Pain, Pain Management Techniques, Treatment & Care for Chronic Pain, and Understanding Chronic Pain.

WebMD Pain Coach™ is available for free from the App Store for the iPhone and iPod Touch or at http://itunes.com/apps/webmdpaincoach.  Detailed information on the app is available at http://www.webmd.com/webmdpaincoachapp.

*WebMD Mobile Survey Methodology: 531 people responded to a WebMD survey targeting chronic pain users conducted in May-June 2011 on WebMD’s mobile web and iPhone/Android apps.

**Medscape Survey Methodology: 131 physicians responded to a Medscape Poll targeting physicians who treat patients suffering from chronic pain. It was conducted from June 3-June 11, 2012, online in Medscape’s Physician Connect Community.

About WebMD

WebMD Health Corp. (NASDAQ: WBMD) is the leading provider of health information services, serving consumers, physicians, healthcare professionals, employers, and health plans through our public and private online portals, mobile platforms and health-focused publications.

The WebMD Health Network includes WebMD Health, Medscape, MedicineNet, emedicineHealth, RxList, theheart.org, Medscape Education and other owned WebMD sites.

All statements contained in this press release, other than statements of historical fact, are forward-looking statements, including those regarding: our expectations concerning market opportunities and our ability to capitalize on them; and the benefits expected from new products or services. These statements speak only as of the date of this press release and are based on our current plans and expectations, and they involve risks and uncertainties that could cause actual future events or results to be different than those described in or implied by such forward-looking statements. These risks and uncertainties include those relating to: market acceptance of our products and services; relationships with customers and strategic partners; and changes in economic, political or regulatory conditions or other trends affecting the healthcare, Internet and information technology industries. Further information about these matters can be found in our Securities and Exchange Commission filings.

Product Review: Aculief

Aculief is a wearable acupressure device that aims to relieve tension and restore the body's natural energy flow. I've had so many people who hear about my headaches tell me to squeeze the webbed area between my thumb and forefinger; Aculief does that for you. It applies pressure to the LI4 meridian, an acupressure point that has been used for thousands of years in traditional Chinese medicine for pain relief. I was provided with free samples, so I decided to give it a try.

"But it's bright green!" you may say...I actually kinda like that. You don't have to wear it for a set amount of time, but I wanted to give it a good test so a few times I wore it most of the day, and I liked explaining what it is to people because it helps raise awareness for chronic headaches and migraines. Also, it was a very clear way to inform my husband that my head hurt without having to tell him (sometimes he gets tired of hearing about it and I don't blame him one bit).

A few more positive things before I go into the negatives:

• It's portable
• It's something drug-free to try (always a good thing)
• It's easy - just clip it on
• It doesn't really hurt your hand, you just feel pressure
• The packaging is gorgeous (coming from a graphic design student)

And on to the negatives:

• It didn't work for my headaches...maybe it helped a few of them but it could have been me wanting it to work. I can't say whether or not it helped relieve tension, since I was more focused on my head pain
• My dad and a friend tried it, and it didn't help them either
• According to the website it costs $29.99 which seems like a lot for something so small, but then again if it works, it's cheaper than being on medication
• It stretches a little after you use it a few times, but it still stays clipped on
• When you take it off you'll notice it leaves a mark, but that's not really a big deal to me

So should you buy one? Personally I'd try squeezing the acupressure spot next time you get a headache to see if it seems to help, and if it does, then you might want to give Aculief a try. Unfortunately it didn't help me, but as I always say - and it's the truth - everyone's different, so something that may not work for me may work for you.

By the way, I have a few more of these so if you live in the Raleigh-Durham area, I'd be happy to meet you somewhere and give you one. Just send me an email (waronheadaches@blogspot.com).

Disclosure: Aculief provided me free products in exchange for me writing this review. Both parties agreed that the review would be unbiased. 

Headaches seem better, but aren't

I was going to write a blog post about how my headaches have finally been getting better, so I went to look at my headache calendar to see how many fewer headaches I'm having. Ummm, apparently none. I still only have 2-4ish days a month that are completely headache/migraine-free. So why was I thinking they were getting better? My guess is....wait for it...exercise.

I've noticed that my headaches are better during vacations and I thought it was from being more relaxed, which could be the case, but my husband and I took a recent vacation to Nashville, TN (pics below!) and I noticed all the exercise I was doing. When we're on vacation, we always do a ton of walking, and this time we also took our bikes so we could ride the local greenway.

Plus, now that I'm healed from my surgery, I've started running again. I downloaded the free Nike+ app which makes running even more fun (for me anyway) because I can track my distance, speed and time. Then I can brag to Jonathan that I'm a better runner than him...not that he claims to be a runner. :)

From what I can tell, exercise cuts off or at least delays a headache if I'm starting to get one. Occasionally though, probably when a migraine is inevitable, it brings on a headache/migraine, but that hasn't happened very often.

So while the frequency of my headaches hasn't improved, they still seem to be slightly better, at least when it comes to the pain level - or my impression of the pain level. That gives me the drive to keep exercising as much as possible!

In the works:

• I'm switching neurologists because I was having to pay a separate "hospital fee" (around $250) for my clinic which was tied to a hospital. It's taking forever to get all my records transferred and get me "released" (like my calling for an appointment somewhere else isn't enough?) from the former place, but everything is almost ready and I'm looking forward to meeting neurologist #7!
• A company mailed me a product to try out, so expect a review soon (don't get your hopes up). 

Jonathan & I are jamming at the visitor's center

Day trip to Mammoth Cave, KY

Headache Poster

I made this poster using Adobe Illustrator for the final project of my summer class, and I thought I'd share it with you all. I purposely put the words over top of myself to symbolically show how the headaches/migraines and treatments have tried to take over my life. So artsy, I know. :) My teacher gave me an A!

Guest Post: For Those Missing Midrin

I don't feature guest posts very often, but since I'm having a whirlwind summer with an intense summer class, internship and part-time work (all fun stuff, since I'm doing lots of designing!), I haven't been able to blog as much as I'd like. So when I received an offer via email and the topic sounded like it could be helpful to you all, I gladly said yes. Just a personal note, I haven't tried Midrin or a similar compound, although I won't rule it out for the future!

John Voliva, author of the post below, is a pharmacist and serves as social community manager at Professional Compounding Centers of America (PCCA). He has more than a decade of experience owning a compounding-only pharmacy, and has worked hand-in-hand with hospitals, physicians and patients to help solve problems stemming from drug shortages. PCCA has a membership of more than 3,900 independent community pharmacists, and provides them with chemical ingredients, equipment, devices, training and education, among other resources.

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For Those Missing Midrin
There are solutions available locally

By John Voliva, RPh

For those that suffer from migraines, finding a medicine that offers real relief can be a challenge. Many migraineurs came to rely heavily on the popular drug Midrin and were very upset when it was discontinued in 2009, and then again when generic versions were pulled from the market in late 2010. Regional shortages of Midrin continue, with sporadic or limited availability, at best. For sufferers of migraines, this unavailability has posed a significant problem, as Midrin had been the best medication they had found to treat their symptoms. Since then, they have been forced to turn to other drugs or remedies to cope with their pain. What if they could get Midrin back?

Many are unaware that there is a solution to the Midrin shortage through pharmaceutical compounding. Compounding is the art and science of preparing customized medications, and effectively returns to the roots of pharmacy, where pharmacies make, by hand, medicines that doctors prescribe. Through the years, modern technology and research have allowed more pharmacists to customize medications to address very specific needs not met by major manufacturers.

The active ingredients that were used in Midrin (acetaminophen, dichloralphenazone, and isometheptene mucate) are still available. While pharmaceutical companies are unable to produce Midrin or a generic without clinical trials and applications for FDA approval, compounding pharmacies – which are regulated by state boards – can compound an equivalent prescription medication. Following a precise formula, these pharmacists use the same active ingredients, in the same concentrations, to provide patients another option in treating their migraines. Compounding also makes additional customization possible: If, for example, a patient was instructed to limit their use of acetaminophen, a compounding pharmacy could compound using only the two other active ingredients. In this way, an effective analog could be provided, while helping the patient abide by doctor’s orders.

There are thousands of compounding pharmacists practicing all over the United States and Canada, with the tools and ingredients needed to create a Midrin equivalent. To find one, patients and doctors can go to www.findacompounder.com. Entering a zip code at that site will yield a list of compounding pharmacies within a given radius, as well as information on what to look for in finding a good compounder.

WoH Quoted in Article: What You Might Not Know About Treating Migraines

War on Headaches was mentioned in an article on The Daily Muse, a website for career-oriented women. The article is titled "What You Might Not Know About Treating Migraines."

The author, Varci Vartanian, used to work as a nurse for a neurology practice, so while she doesn't suffer from migraines, she knows all about them. Since it's National Migraine Awareness Month, she decided to write an article on the topic and she found my blog and requested an interview. I enjoyed talking with her because she was very understanding and sympathetic of migraines and how they impact one's life. Please be sure to check out the article and share it with your friends - especially the ones who say "just take some (insert latest OTC headache med they just saw on a TV commercial that "works" for migraines)."

Thank you Varci and The Daily Muse for raising awareness of migraines and how tricky they can be!

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This isn't related to this post, but I wanted to share a story with you all. I was shopping with a close friend who has had two kids and is pregnant with her third, and she was having to avoid certain stores that had strong scents because they made her nauseous. We also smelled cigarette smoke from far away. I told her that I understood how she felt because I always had a heightened sense of smell plus random nausea, and she said, "Wow, it's like you're pregnant all the time!" I hadn't thought about it like that, but it's so true! She was able to better relate to me from making that connection, which was nice. :)

Know Your Dose!

The Acetaminophen Awareness Coalition recently launched the Know Your Dose campaign to educate those who have chronic pain on the proper use of medications containing acetaminophen. Did you know that acetaminophen is used in more than 600 over-the-counter medications?! I didn't either until I found out about this campaign. Most of us know we're supposed to stay within the recommended dose, but it's easy to overdose accidentally if you're not aware of which medications contain acetaminophen, especially if you're taking more than one medication.

The Know Your Dose website has a cute interactive game, a short video and an interactive label reader that explains each part of OTC and prescription labels. It's a great reminder that we should always read the entire label before we take something new! Or heck, if your memory's bad and you enjoy reading, read it every time. :)

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So just a brief personal update. It's been a month since my surgery and a month has made such a huge difference! I can walk without bending over, I don't have to take medicine every three hours, the glue on my stomach is almost gone, etc. Unfortunately my headaches and migraines are still the same old, same old. Since I met my insurance deductible from the surgery, I had glorious plans to finally try Botox and whatever else I could think of, but unfortunately my insurance renewed June 1 and now I'm starting all over. I cried when I found that out...it made me so angry! My deductible is $1,000 which isn't a *lot lot* but considering I have to pay for part of the surgery (a very small amount thank God), I can't go on a spending spree right now.

Plus, my one lonely ovary has been mourning the loss of my right ovary in the form of angry acne (on my face, not my ovary!), so I had to see a dermatologist and go on three different acne medications. That hasn't been fun but I'm trying to suck it up since at least the acne isn't causing me physical pain (except for the ones that form big bumps under the skin...ouch). Emotional pain on the other hand, oh my goodness.

By the way, happy National Migraine Awareness Month! Lots of bloggers are doing daily posts on various topics this month, so if you're looking for migraine information, now's a great time to read some blogs!

Endometriosis

During my follow-up appointment with my surgeon's nurse, I learned that I heard correctly after my surgery - I do in fact have endometriosis. If you're not familiar with the condition, here's how MayoClinic.com defines it:

"Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus."

The link above explains the symptoms and other details. Basically, it sucks. But I've always had extremely painful periods and at least now I know the cause. Unfortunately, there's not much you can do to help, but I already know all about that scenario. ;) I thought the surgery might have helped, but I got my period soon after the appointment and it's been as painful as always.

Then there's the whole fertility thing. My husband and I haven't tried to have kids yet because we haven't felt ready (even though we've been married eight years this month), but now I feel like we should at least start trying because there's no telling how long it will take, if it happens at all, due to the endometriosis. I'm trying really hard not to stress over it, but I'm 29 and at the age where EVERYONE and their mothers are popping out babies (okay, maybe not their mothers...), so that doesn't help. Anyways, I'd rather not think about it right now.

I was also hoping the surgery would have helped my head, but no such luck. I had another one of those migraines where it wakes me up and I can't move without feeling like I'm going to throw up. My husband brought me everything I needed before he left for work, and the Butalbital (Fioricet) ended up working although I had to take another dose later on that day because the pain started to come back. My husband brought me graham crackers to take with my meds but since we were almost out of them, he also brought a box of cheddar duck crackers which are basically like Goldfish. Can anyone imagine eating those when you're nauseous? I don't think Jonathan gets nauseous very often LOL. At least he was trying to help. :)

Art for Migraines
So I got an email from a migraine sufferer in the UK who is doing an online art exhibit through June 30 and he's donating a percentage of purchases to Migraine Action, a UK charity. If you're looking to buy some animal/landscape paintings, check out Mike Jory's website; I included one of his paintings below. His work is gorgeous!

"Riverside" by Mike Jory

Surgery for Ovarian Cyst

In a previous post, I wrote about an ovarian cyst that was giving me pain. As expected, I had to have surgery to remove it. What was UNexpected was that my blood work came back with high numbers for one of the tests that can indicate cancer, so instead of my gyno doing the surgery, a cancer surgeon did it as a precaution, and I was moved to a larger hospital which is luckily only a few minutes from my condo. Both my gyno and the cancer surgeon believed that the cyst wasn't cancerous (and they were right; I won't leave you in suspense on that one!), but they wanted to play it safe, which is a good idea when it comes to possible cancer. Of course I was still scared as anyone would be, but I tried not to think about it - no use worrying until I knew for sure.

The surgery was last Tuesday. The only surgery I'd had prior to that was wisdom teeth removal, so I had no clue what to expect. I was calm though, and of course I credit God for that. My friends and family put me on prayer lists at four different churches, and I had three preachers pray with me over the phone before and after the surgery, one being my dad. :) The night before I'd had to cleanse my system using magnesium citrite (I drank the sparkling lemon one straight - it wasn't that bad) and Dulcolax. Then when I checked in the morning of surgery, I had to do a vaginal douche with what I think was povidone iodine, and then I did two enemas. All I'll say about that is it's not the best way to start your day. Then it was a lot of waiting because a surgery before mine was running behind and only a limited number of rooms had the robot machine that was used for my surgery. Once I was wheeled away to the room, it took only seconds for the gas and whatever else they gave me to work their magic.

Side note - there's a picture of my scars at the bottom of this post (second picture down), so if you're queasy about things like that, scroll slowly to avoid the picture!

After the surgery, I started to come to and the first thing I asked was, "Was it cancer?" and thank God the answer was no. Okay that was actually the second thing I asked...the first was "Can you knock me back out?" :) I was still out of it, but I think they told me I have endometriosis - I'll know for sure after my follow-up appointment Wednesday. What I do know for sure is they removed a lemon-size cyst, my right ovary, right fallopian tube and appendix. And I went home that same night!

The recovery has been slooooow and painful, but I'm just thankful it wasn't cancer and that I still have one ovary, which will take over each month. My headaches have been better this week, but I've been on pain medicine around the clock too. I read that ovarian cysts can impact headaches and migraines, so I'm going to ask my doctor about it during the follow-up appointment.

Oh since the last time I blogged, I became an aunt! My sister and her baby Hadley, which means "field of heather" :), took care of me the day after my surgery. Here's a picture of my beautiful niece:

My niece, Hadley! :)

And here's the other picture I mentioned, my battle wounds. The surgery was laparoscopic. There are stitches on the inside and the outside is sealed with glue. I think I enjoy showing them off so much because unlike with headaches and migraines, there's actually a physical, visual, tangible sign of my pain! So anyway, here's my belly - don't look if you get grossed out easily!

Not sure why left side has more cuts than right...there's probably a good reason.

Product Review: On-Target Ice

I was contacted by On-Target Ice to review their natural headache remedy product that works via cold and massage. As you see from the picture below, the device is comprised of a copper tube topped with a chrome steel ball. It measures about 4.25 inches and is filled with a non-toxic gel. Mine came with an insulating holder (similar to pool noodles) that keeps your hands from getting cold and also helps the device retain the cold longer. It also comes with a storage pouch, and the device can be stored in the fridge or freezer. The shape allows you to massage pressure points.

Photo provided by On-Target Ice

Before I start my review, let me go ahead and get this out of the way, because I know what some of you are thinking. No, it's not one of those. When it arrived in the mail, my husband gave it one look and said, "Does it vibrate?" Ha. Ha. Ha. I will say that due to its appearance, I keep it hidden in my refrigerator drawer. I wouldn't use it out in public because it might get some second glances, but then again I don't carry around a refrigerator or freezer and the device doesn't stay cold long enough to use it once I leave the house.

Now that I got that out of the way... I've been using my On-Target Ice for more than a month because I wanted to test it out on headaches and migraines of all levels. I can say without a doubt that it helps my minor headaches. It is so cold coming out of the fridge that it shocks my skin, which distracts me from the headache. I usually hold it to one eye socket until I can't stand the cold anymore, and then I switch to the other. After a few minutes as it starts to warm and/or my skin adjusts, I use it in other places, like my forehead, temples and neck. Sometimes I'll use it to massage my temples. The flat copper end works great on the top of my forehead, while the rounded end fits perfectly in my eye sockets, as seen in this photo (that's not me by the way):

Photo provided by On-Target Ice

I'm impressed with how long the device stays cold. I haven't timed it, but I'd say it lasts a good 30-45 minutes, maybe longer. Sometimes I use it on its own, and my headache goes away. Other times I need to add an ice pack on the top of my head and they both work.

For more severe headaches and migraines, this device doesn't do the trick. It helps, but once it starts to get warm, the pain goes back to its original level. From my experience, major head pain calls for major drugs, and ice packs and other natural remedies aren't enough, as much as I hate to say that because I hate relying on drugs.

Other random observations:

• It doesn't sweat like some ice packs do, so water doesn't end up dripping down my head. 
• I tried putting it in the freezer one time, but it came out ridiculously cold. Trust me, the fridge keeps it plenty cold. 
• I wear a lot of makeup thanks to my acne (due to my cyst and crazy hormones) and I have oily skin, but the device hasn't discolored and hasn't shown any wear at all.
• It would be awesome - but probably physically impossible due to varying head shapes - to have a version of this that covers your entire head, like a cap!

At the cost of $24.99, this isn't a bad deal. It seems like it will last forever - unlike most ice packs. If ice typically helps soothe your headaches/migraines, this is worth a try!

Disclosure: On-Target Ice provided me a free product in exchange for me writing this review, but both parties agreed that the review would be unbiased. 

Yours Truly on CBS New York

I'm on a news story about medication-induced nightmares on CBS New York! Here's a link to the video.

My puppy Ellie is famous now. :)

P.S. - Here's an earlier post about the filming of this video.

Ovarian Cysts - trip to ER

This post is a little scattered because I have a really bad headache (surprise), so I apologize in advance if I jump around or don't make sense!

I went to the ER about 2 1/2 weeks ago because I thought I had appendicitis. Five hours and a CT scan later, I found out it was actually ovarian cysts.

It had all started the night before when I woke up with such bad cramps that I got out of bed and onto the floor and pretty much just rolled around in agony. Then I went to the bathroom and dry heaved because the pain was so bad. It was miserable. I took meds to knock me out, felt a little better the next day but had another "attack" that afternoon so I had my husband take me to the hospital.

The nurse gave me Toradol for the pain, which I used to take for migraine but it hasn't helped the last few times. It didn't help my cyst pain either. The CT scan was interesting. Because it was an abdominal one, I had to drink two bottles of nasty stuff not-so-disguised with lemonade flavor; it was gross but I didn't mind it much. Part of the scan was done with contrast and when they inserted the dye, it TOTALLY felt like I was peeing my pants. The tech warned me that would happen, and he said that he's only had one patient actually pee her pants, but then he added that "she was just crazy." LOL.

The pain was so bad that I missed classes and work (luckily I could work from home and spring break started at the end of that week) and even taking my dog out took a lot of effort because walking hurt and I had to hunch over a little. Luckily I could use my condo building's elevator. I couldn't even make it to see my gyno until three days later. She did an ultrasound and told me she would hate to be me and that I must be in a lot of pain. I wanted to hug her because she had real sympathy and compassion. She told me I couldn't exercise for at least two weeks and I'd need to see her in a month for another ultrasound. One of the cysts on my right ovary looks pretty bad and may need to be surgically removed, but I'll find out for sure at the followup.

I know this post doesn't have much to do with headaches, but it's medical related and it's definitely impacted my head. No exercise + lots of pain + lots of Aleve and Motrin + hormones acting up = migraine/headache increase. I'm ready to get past this cyst issue so I can focus on healing my head!

Online Clinical Trial Opportunity

I get a lot of emails through this blog, but a recent one stood out. According to a company representative, "Quincy Bioscience has recently launched a distance trial to study the effects of apoaequorin on migraines after hearing several anecdotal reports that the use of a popular over-the-counter supplement reduced the symptoms of migraines."

"Distance trial" means that the trial is conducted online using migraine assessment surveys. Apoaequorin is a protein found in a type of jellyfish, which I think is neat because I've always believed that the sources to many of our ailments can be found in nature (I credit God).

According to the website, "Intracellular calcium dysregulation has been cited as an important mechanism as a source of migraine headaches. Experts have identified abnormally functioning calcium channels, which transport electrical calcium into the brain cell, as a reason for excessively high levels of calcium and subsequent overstimulation as a key contributor to migraine headaches. Apoaequorin is a safe non-toxic dietary supplement which has been available for over-the-counter purchase in health food stores and pharmacy chains for over four years. Apoaequorin is a naturally occurring calcium-binding protein, which is very similar to endogenous proteins that have been shown to deplete with age. In laboratory experiments conducted at the University of Wisconsin-Milwaukee, apoaequorin proved highly neuroprotective. In human trials of generally healthy adults, apoaequorin have shown to improve cognition, quality of life through reduction of pain, greater mobility, increased energy, better sleep and additional quality of life measures."

If you want to participate, the trial lasts 90 days and no travel is required. Eligibility and other info can be found on this page.

I'm interested to see the results of this trial down the road!

Study Links Colic and Migraines...Sortof

A bunch of articles such as this one, "Study Links Colic in Infants to Migraines in Moms," came up in my migraine google alert. I find it really interesting because I had colic as an infant and while my mom doesn't have migraines (my dad does), I do. I'm wondering if infants who have colic end up with migraines like me. How many of you had colic as a baby?

Melatonin FAIL

Those of you on Twitter are probably sick of the whole #fail trend, but that's the best way to describe my experience with melatonin. I decided to give it a try last weekend (3 mg before bedtime...and it was from Whole Foods so it was a good brand) to see if it would help me sleep better (deeper) and indirectly help my migraines. Saturday morning, nothing felt different. Sunday morning, same. Monday morning...FAIL.

Sunday night I noticed I was getting a headache but that's normal for me, so I didn't think much of it. Then around 5 a.m. Monday I felt the throbbing in my head and it woke me up. I rarely have migraines that wake me up, and when they do, it's a bad sign. I was nauseous and in so much pain that I was shaking when I slowly made my way to the kitchen to get water, bread and Butalbital. Then I went to the bathroom and had umm...IBS issues shall we say? Next I sat on the couch to eat a little before taking the med, but just a little pinch of bread triggered huge nausea waves so I turned on the TV to distract myself, and of course the light just about killed me. And guess what commercial comes on? The limited time only flaky fish sandwich from Arbys - yum! I just about lost it right there. I couldn't stand the pain anymore so I took my medicine and had another pinch of bread, and that's when I had to go to the bathroom and umm...get intimate with my toilet shall we say? I've only thrown up one other time from a migraine, so I knew something was up. Miraculously, the medicine stayed in my system and started to kick in. I was able to eat crackers and didn't throw up anymore after that, but I did continue to have digestive issues the rest of the day and I had to take another dose of Butalbital after about five hours because the migraine started coming back.

There's a slight chance that it wasn't the melatonin because I did have Thai food Sunday for lunch from a restaurant I hadn't been to before, but the restaurant doesn't use MSG and plus food isn't a big trigger for me. Because melatonin is a hormone and my body hates when I mess with my hormones, I'm almost certain that's what caused the migraine from hell. So after three doses, I stopped melatonin.

A friend from church recommended L-Tryptophan for sleep, so I think that will be the next thing I try. Once I give myself time to recover from the big #fail, that is.

P.S. - I'm aware that migraines like this are the norm for a lot of you, and I just want to say I'm so sorry. Honestly. It makes me tear up just thinking about it. :(
P.P.S. - I've recommended ginger mints for nausea in the past, and now I realize that those help for nausea from bad headaches and some migraines, but not the mega-migraines. In fact, I had one in my mouth as I was throwing up.

TV & a sign

Vague title, but this blog post is so random I wasn't sure what else to put. It all started when I received a call at work from a CBS reporter. I still work at a public relations agency part-time, so that's a pretty normal occurrence. Well turns out it was a producer for WCBS, a local news channel in New York who was doing a story on nightmares as side effects of some medications, and she stumbled upon my blog post, appropriately named "Nightmare side effects." She was having trouble finding people to interview and she read about how Bystolic gave me nightmares. Because I'm in North Carolina, an affiliate news channel (WRAL) sent a cameraman to film me while the producer asked me questions via speakerphone.

The interview took place in my condo, and I explained how I've tried a lot of things for headaches and how beta blockers such as Bystolic are commonly prescribed as preventatives, but none of them worked for me. Then I went into the details of the nightmares, how realistic they were and how one that stood out involved me stabbing someone repeatedly. It was self-defense, but it was very detailed. I also said that compared to other side effects I've experienced, nightmares didn't bother me too much. Then the cameraman took B-roll footage of some of my pill bottles, me coming in the door and putting down my bags, me reading a magazine, me playing with Ellie, etc. We did a fun shot where he filmed while walking into the kitchen and then pointed the camera at our knives while I pulled one out and held it in front of the camera.

Shooting B-roll footage in my condo!

Instragram photo from my new toy, my iPhone (99cent for the 3G version!)

I'm not sure if I'll get to see the final video unless WCBS puts it on their website, so if any of you live in the area, let me know if you see it!

So we covered the TV, now what about the "sign" part of this blog post's title? Back when I was working full time my office was right outside a doorway where people smoked, and the building was old so the smoke went through into my office, which didn't help my headaches. I contacted the people in charge of the office building about it, and they said they would look into making a rule that required people to smoke a certain distance from the building.

Well, nothing happened so I taped up my own handmade sign outside the door. Some smokers listened to it and some ignored it; eventually it was taken down. Fast forward a few years (I would say at least 2-3 years) and the building added a designated smoking section away from the building, removing the ash trays from the trash can just outside the door. Then yesterday at work, my boss pointed out this sign, right where my homemade one had been:

Sign of success!

Success! :)

Please sign this petition to Congress

The Alliance for Headache Disorders Advocacy has put together a petition to urge Congressional hearings on the impact of migraine and headache disorders.

I don't sign online petitions very often, but this one only takes a few seconds and it could really make a difference, especially if enough people sign it. Here's the petition; I posted the link on Twitter and Facebook and I encourage you to sign this and also spread the word. Here's what I posted on Facebook:

Please sign this petition if you have a minute (it won't even take that long). Migraines impact so many people, including myself, and well-known medicines like Excedrin or Imitrex don't help everyone; in fact, they make mine worse. There's no easy solution and more research must be done!

I really do feel that some - heck maybe most - people assume that people with migraines or headaches can just take medicine and it works. If I wasn't a sufferer, I might think the same and I might also feel the same way about other chronic conditions. I'd bet that Congress feels this way too. They need to know that the war's not over yet. We haven't won, and we're certainly not going to give up and surrender!

Home Sweet Home

Me, Jonathan & Ellie sticking her tongue out

As much as I love Christmas, I'm so happy the traveling aspect of it is over! Jonathan and I visited my parents for a day and a half and we had a wonderful time with them. The above photo is on their porch. They only live about 45 minutes away. After going home a few hours, we drove 2 1/2 hours to visit J's mom and her husband and stayed 4 nights, and then we drove 4 hours from there to J's dad's house and stayed 3 nights. It was our first big trip with Ellie and I was SO thankful that she slept in the car pretty much the entire time.

Being away from home for a week is stressful, and having to watch after Ellie made it even more so, as much as I love her. Surprisingly, I only had 1 headache during the trip. I was on my period (TMI, sorry) so I took Aleve the first 3 cycle days to try avoiding major cramps. Usually Aleve doesn't phase menstrual headaches/migraines, so the lack of headaches may have been because I didn't have school or work and was disconnected from technology and in the country. Plus I was able to walk Ellie every day and eat lots of good food!

A negative situation was that J's dad lives in a small house with no central air, and he smokes cigars in the house when it's cold outside without opening a window, so there's no circulation and the smoke is unbearable. Smoke has always bothered me, even before I started getting headaches, and the times I've stayed there in the past were days of constant pain. So this time, we got a cabin, and J's sister and brother-in-law stayed with me there while Jonathan stayed with his dad because he's old and needs someone there at all times. On Friday, J's birthday, his sis & BIL stayed with his dad so J could stay with me at the cabin, which was nice. Anyway, his dad was mad at us (except for J) for not staying with him in the house and particularly mad at me because he knew it was my decision. Eventually he got over it; in fact, one morning while we were at his house he waited for me to go walk the dog before lighting his cigar - though I was told that he mimicked me fussing at him for smoking inside while he smoked it, but I thought that was a little humorous.

I guess the whole thing just made me feel like J's family thinks I'm a snob for wanting to rent a cabin instead of staying with his dad, and I feel helpless trying to make them realize how awful cigarette/cigar smoke is to someone with headaches/migraines. I hate drama.

Of course now that I'm home, I woke up with a migraine this morning. I didn't drink last night so that's not it. It could be a letdown migraine from the stress of traveling/in-laws, the rainy weather today, or the city air. Who knows. I'm just happy I had a break the past week.

Here's hoping 2012 is a year for improved health for all of us! :)