Book Review: Living Well with Migraine Disease and Headaches

I'll be completely honest...a lot of people recommended I read Living Well with Migraine Disease and Headaches by patient advocate Teri Robert, but I was hesitant because of the title. I don't want to "live well" with pain - I want it to go away!

After reading the book though, I too am joining the fans who recommend it. It's different from other books I've read by doctors who simply go through the types of headaches and a few drug treatment options. This book includes that information but also gives personal stories, including Teri's, and educates you on terminology and our legal rights as patients. Some of the personal stories are extremely sad, but you need to read them to know that the worse thing that can happen - stroke for example - can and has happened, so it's important to have that knowledge and be aware of what's going on with your own body.

Everyone who suffers from chronic headaches and migraines, or "Migraine disease" as Teri calls it, should read this book.

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A quick update: My MRI was canceled because the MRI office couldn't get in touch with my neurologist for a signature which was required by insurance. I spoke with my neuro's assistant and she said that wasn't the case; my neuro had to speak with a doctor on my insurance's medical board and wasn't able to get in touch with them in time. I'm going to guess that my insurance is holding things up so that I'll have to wait until January for my MRI, which means I pay my full $500 deductible because it starts over in 2010. Ugh.

I'm starting my rice and water diet January 1 (please don't try to convince me not to do it, unless you're a nutritionist), so I'll keep everyone posted on how it goes. I'm also headed to the library to pick up another book to help me do the elimination diet, so I'll have another book review coming soon.

Happy New Year, everybody!

Webinar Notes - Avoiding Holiday Headaches

I attended the holiday headaches webinar by the National Headache Foundation and I wanted to share my notes. A big thank you to Dr. Sylvia Lucas, the NHF and Merck & Co. (for sponsoring).

How to manage holiday headaches/migraines:

• Identify your triggers (environmental, diet, stress, sleep, etc.) using a headache diary.

• Avoid triggers you know, plus common triggers (sometimes it takes a combination of triggers to bring on a migraine).

• Avoid disrupting normal sleeping and waking patterns – make sleep your #1 priority.

• Social engagements expose you to smoke and perfume – get fresh air or try to move to an area that’s relatively clear. If you can’t get away, try breathing through a scarf (during a play for example).

• If you must drink alcohol, alternate between alcoholic and nonalcoholic beverages, mix drinks with other fruit/vegetable juices, drink slowly, and avoid red wine.

• Don’t skip meals; if unable to follow a normal eating schedule, at least have snacks – always keep snacks on hand (not salty though because they can lead to dehydration). Good options are fruit, peanut butter for protein, crackers, and nutrition bars (Kashi, Luna, etc.). For bars, check for those with the lowest sugar and highest protein.

• Avoid ripe cheeses, processed meats and chocolate.

• Schedule personal time to give yourself a break.

• Traveling tips: plan in advance, be prepared for lines/long waits/traffic, and pack migraine meds.

• Rest, exercise, ice/heat, massage, biofeedback.

From the Q&A session:

- Are there programs to help cover cost of migraine medications? See drug company Web sites for programs, coupons.
- What are ergotamine derivates? Cafergot, DHE, etc. – older than triptans but highly effective. Can cause nausea and the caffeine can cause trouble sleeping.DHE-45 is a good rescue drug (injectable).
- (One of my ?s) If I do a two-week rice diet, slowly adding foods back, is that healthy? It shouldn't cause harm but you may not need to do it a full two weeks. It's better to do it under a nutritionist's guidance.
- Can neck/shoulder tension cause migraine? 75% of migraine sufferers have neck/shoulder pain so it can be part of a migraine – many people think muscle tension is causing the migraine but that’s not the case.
- Can stress cause migraine? Headaches in stressful occurrences can be triggered by adrenaline/nervous system changes.

Hope these notes aren't too scattered or out of context.

I'm going to take a short break from all things computer, including this blog, so I want to go ahead and wish everyone a Merry Christmas!!!

Forehead Lift for Migraines

My Twitter friend whose sister suffers from migraines told me about today's The Doctors TV that talks about forehead lifts for migraines. Check it out here. Has anyone tried this? Something to add to my wish list of future migraine treatments...especially once I start getting wrinkles! ;)

*Warning - not for those with weak tummies!*

Ulcer med caused headaches, go figure!

I was on 40 mg of Pantoprazole Sodium for a stomach ulcer, but I realized after being on it for a month that it was giving me a constant headache and migraine attacks too! The first side effect listed was headaches, but that's a common side effect - even for medications I've been given to treat headaches - so I thought nothing of it. But after 29 headaches in November, I decided to stop taking it. My internal medicine doc told me to take two 150 mg Zantac pills a day for a month instead. So far today's my first day with only a minor headache.

An unfortunate update: I was supposed to be having an MRI right now. But my insurance requires a form to be signed by my neuro and the MRI people weren't able to get in touch with my neuro to sign the form. I could have had the MRI anyway and tried to get the form signed later, but there would be no guarantee that my insurance would cover any of the MRI. I'm already going to have to meet my deductible, which my husband is giving me the hardest time about ("You don't need any Christmas presents - you're getting an MRI" - he better be kidding), so there's no way I can pay in full. So I had to cancel it. I'm going to call my neuro's office to reschedule and ask them about the stupid form.

Oh and regarding biofeedback, my insurance doesn't cover it so I'm trying to found out how much it will cost. I'm probably not going to do it, unfortunately.

Sorry for the negative updates. I guess the lessons learned are to make sure your meds aren't giving you headaches or making them worse, and maybe we do need some sort of health care reform!!!

Free Headache Webinars

Join us for

Headache Health Talks

 ~ a FREE Webinar series.

Get the latest information about headache causes and treatments from the nation’s leading headache specialists and participate in a question and answer session to learn how to better manage your headaches.

Enjoy Your Holidays: A  Guide to Managing Migraines	This program covers basic information about migraine, as well as how migraine sufferers are affected during the often stressful holiday season. We will discuss common holiday-related triggers, including family stresses, seasonal food triggers and changes in schedule, and how to avoid them to make the best of your holiday season. There will be Q&A sessions with the presenting headache experts after the presentation.	December 8, 2009 12 PM CT - Dr. Traci Purath 6 PM CT - Dr. Vincent Martin December 9, 2009 6 PM CT – Dr. Sylvia Lucas December 10, 2009 1 PM CT– Dr. Traci Purath December 16, 2009 4 PM CT– Dr. Sylvia Lucas

Register today by emailing nhf1970@headaches.org

Include the program name and date in the subject line and your name, city and state in the body of the email. Send to nhf1970@headaches.org. You will receive instructions via email with a toll-free number to call to participate in these educational and interactive teleconferences.

Sponsored by National Headache Foundation through an educational grant from Merck & Co., Inc.

New Game Plan!!!

My headaches are worse than ever. 20+ days a month now. AND I still have migraines! I can deal with the headaches, but the migraines will be the end of me. So, it's time for a new game plan. Enter Neuro #6. I've outline our plan of attack below:

• Sleep. My sleep study results showed I woke up 10 times an hour, and Neuro #6 read the results and said it was from leg movements (which I didn't notice at all). To fix this I'm taking a med that can help with Restless Legs Syndrome called Ropinirole HCL, or Requip. It may take multiple things to help my headaches, and getting a good night's sleep is definitely one of them! 

• Jaw. Related to sleep, I frequently grind and clench my teeth in my sleep. Sometimes my husband tells me or sometimes I know when I take that first bite of breakfast because my jaw is killing me. I tried a drugstore mouth guard but didn't notice a difference, so Neuro #6 referred me to a TMJ specialist. My dad has TMJ (it can be hereditary due to bone structure similarities), and it can be related to headaches, so this is a good move. My appointment is early next year.
  

• Migraine diet. This is one I asked about because I've been wanting to do it for a while. Sometime in January I'm planning to eliminate everything but rice from my diet. The new neuro said to do it two weeks and see if I notice a difference in my headaches; if not, I can go back to eating like normal. We agreed that if I did the gluten-free diet, I can do anything. It's only two weeks! 

• Biofeedback and meditation. The clinic I visited offers biofeedback; however, when I tried to schedule an appointment, they said they are "out of network" for my health insurance, so I need to do some research to find out how much it will cost. The Web site's undergoing maintenance but I'll look into it this week. Neuro #6 also recommended trying a mindfulness meditation class to learn stress reduction, but the ones she recommended are in the $300 range, so I'm going to hold off on that.
  

• MRI. And speaking of expensive, I almost forgot the most exciting part of the appointment! I FINALLY found a neuro who wants me to get an MRI! After nine years of headaches and migraines, someone wants to look at my head, the source of my pain. What a concept! :) I'm getting a brain and cervical spine MRI next month and it's ridiculous how much I'm looking forward to it. My husband doesn't understand why I want them to find something because he said it probably wouldn't be good, but I'm sure most of you who are reading this understand. If it's something fixable, I'll do whatever it takes. 

I'm thrilled that this new game plan isn't a long list of drugs. I made it clear that I've tried most of them and wasn't interesting in trying more. I'm still taking Butalbital and Toradol for migraines, and Aleve for headaches, but I try my best to avoid them when I can. 

P.S. - Love me some Philip Rivers! :) 

Image by Jed Jacobsohn/Getty Images.

Support the NHF while Christmas Shopping & Searching the Internet!!!

I've been writing constantly at work and honestly don't want to write another word. So this post is an e-mail I received from the National Headache Foundation. Thanks for understanding my need for a break from writing!!!!

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The holidays are all about the spirit of giving. That’s why the National Headache Foundation (NHF) is letting you know about an opportunity to give to your friends and family, and give back to a cause that’s important to you at the same time! The NHF is proud to be working with iGive.com, a Web site that allows you to do your holiday shopping online and donates a portion of the profits to the NHF.

All you have to do is go to www.iGive.com, register and put the National Headache Foundation as your cause of choice. From there, you can shop in the online shopping mall of over 750 stores, including big names such as eBay.com, Barnes & Noble and Best Buy. A portion of the profits from everything you buy will go to the NHF, and for every search you do on the site, iGive.com will donate a penny to the NHF as well!

There’s no better way to show your loved ones how much you care than with a gift that keeps on giving. The holidays are only a few weeks away, so go to www.iGive.com to start shopping!

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Note - I created an account, made iGive's search page my home page at work and did my normal Internet searches from it instead of google. So far today I've made 36 cents for the NHF from the search feature, and that will add up pretty quickly if do this every day!

Ulcer?

I mentioned in my last post that I think I have a stomach ulcer or ulcers. Every morning I wake up with a burning stomach which mostly goes away once I eat, and before dinnertime I start to get sharp, stabbing stomach pains. I tried a 14-day pack of Prilosec OTC and it didn't work, so I went to my internal medicine doctor. He said that I wasn't taking too much Aleve (I try to limit it to twice a week to prevent rebound headaches; plus if I take it too much it doesn't touch the headache), but he said it still might have caused an ulcer. My rescue med is Ketorolac (Toradol), and that's an NSAID as well but I have to limit it to twice a month. In my opinion it's probably stress, because I have a lot of non-headache things stressing me out, in addition to the daily headaches. The doctor didn't do an X-ray or anything but did listen to and feel my stomach and said there was inflammation.

He put me on 40 mg of Pantoprazole Sodium which I assume is the generic for Protonix, a gastroesophageal reflux med. It was only $10 (with my insurance) for a month's supply, which is awesome because I'm supposed to take it for 2-3 months. Then if my stomach isn't better, I'll have to go back to the doc.

A side effect is headaches, so does that mean it'll cancel out my current headaches? Let's go with that.

Counseling Session #2

Had my 2nd counseling session today, and my counselor did some guided imagery with me. I've done it once before online. You pretty much visualize a relaxing scene in order to take your mind off of your pain and lower your stress. The counselor also let me borrow a book, Creative Imagery, by William Fezler, Ph.D., which has a chapter on pain.

I've been super stressed lately for very good reasons, so I'm praying that this will help. I'm also trying really hard to work out more because exercise is vital to good health. Realistically, I'm always tired and headachey, which makes it hard to work out, but I've been doing a workout at least once or twice a week which is an improvement for me.

Oh and FYI, last month I had 24 headaches, and I haven't had a headache-free day since Oct. 15. I also had a horrible migraine last Friday night/Saturday but after three doses of Butalbital, I was well enough to party for Halloween! However, I went back to two Aleves today, and although my ulcer seems to be under control (if I even had one - maybe Prilosec is working), the Aleves didn't do a thing. This cycle has GOT to end.

Counseling

A co-worker of mine pointed me to an article in a benefits newsletter on headaches, and one of the things offered that I wasn't aware of is three free counseling sessions. I've been miserable lately - although hiding it well - and my headaches have been daily. Tonight it's a migraine (I also have a fever and upset stomach). Ugh.

Since I don't seem to handle stress well (I tense up, tightening my neck and shoulders, and keep it inside or cry), I decided to take advantage of the three free sessions. I'd rather not go into detail on the first session, but let's just say I cried on and off the entire time. In fact I'm tearing up just thinking about it. Stupid PMS.

My counselor recommended a work book on behavioral therapy, Mind over Mood, which I ordered from Amazon. She also said to do "rescue breathing" which I thought I was already doing, but I was doing it incorrectly. I was taking deep breaths through my mouth when stressed out, but you're actually supposed to breathe in through your nose and out through your mouth and breathe with your diaphragm. If you breathe in through your mouth, you could get dizzy easier and cause yourself to hyperventilate.

The counselor also gave me a list of supplements that can increase serotonin naturally (5-HTP amino acid and SAM-e) and help me get deeper sleep (melatonin), but I'm sick of pills so those will be a last resort. I should note that she can't prescribe anything so she said to talk to a doctor before taking these.

One other update on my health - I think I have a stomach ulcer or ulcers. Every morning I wake up with a burning stomach which mostly goes away once I eat, and before dinnertime I start to get sharp, stabbing stomach pains. I'm taking Prilosec OTC for 14 days to see if that helps, and if not I'll see a doctor. Because of this I've stopped taking Aleve. If my headaches get bad enough, I still have Butalbital (which I will absolutely take tomorrow if I wake up feeling like I do now) which has acetaminophen and is not an ulcer-causing NSAID, to my knowledge.

If you're wondering why I haven't mentioned Tui Na massage lately, my husband refuses to let me see the acupuncturist who does that because he's still freaked out from the cupping (see earlier post). I'm trying to stand up for myself, but it is $50 a session and I don't make nearly as much as my husband, so I feel like I don't have the right to spend that kind of money when I don't know for sure that it'll work. Sometimes you have to pick your battles.

Book Review: 100 Questions & Answers About Migraine

I just finished another migraine book, "100 Questions & Answers About Migraine" by Katherine A. Henry, MD and Anthony P. Bossis, PhD. The questions were pretty basic - good for people seeking general information, but not benefitial for chronic sufferers. But there are some sections I found useful, such as dealing with the emotional effects of the pain and the questions on migraine and pregnancy.

Let me stop right here. Mom, if you are reading this, I am NOT having kids any time soon, although you make it clear that you prefer otherwise. :) Patience is a virtue.

So as I was saying, I learned a lot of facts from question #30, "What if I am taking migraine medication and then find out I am pregnant? Will this harm my unborn child?" Apparently I'm going to need to develop a plan with a doctor before I even consider trying to get pregnant, because you have to be really careful about what you take. I knew this, of course, but I didn't know that during the first two to three weeks of pregnancy - which could be before you even KNOW that you're pregnant - some medicines could cause the fetus to spontaneously abort. Also, during weeks three through 10, medications could have an impact on organ formation!

As I said, I'm not planning on getting pregnant any time soon, but now I know that when my husband and I do decide to start trying, I'm going to have to be really careful and pretty much put up with the pain. I'm getting good practice because recently I've suspected that I have a stomach ulcer or ulcers, so I've stopped taking Aleve which I usually take about twice a week and alternate with Butalbital (Fioricet). Luckily since I've stopped hormonal birth control, my headaches haven't been full-blown migraines like they used to be, so I'm better able to put up with the pain for the most part. Although it does wear on you when it's daily.

Anyways back to the book. It's a good introductory book to headaches/migraine and covers everything from treatment to doctor's visits to complementary and alternative medicine. Definitely a quick read if you're interested.

Migraines and Headaches - Questions about Faith and Spirituality - Teri Robert

If you're into spirituality, check out Teri Robert's post on MyMigraineConnection.com called Migraines and Headaches - Questions about Faith and Spirituality.

There are already lots of good discussions taking place in the comments section. I've struggled and still struggle with the fact that I have pain even though I pray to God every day for healing, and I appreciate Teri for tackling this difficult topic! It's a good reminder that there is hope and I need to keep my faith and allow God to heal on his time.

Cupping

This post answers the question, "What is the dumbest thing you've tried so far for migraine relief?"

Cupping.

My acupuncturist-turned-massage-therapist got the idea from someone at a conference he attended in NYC, and apparently cupping works for some headache/migraine patients. In the traditional form, you use fire to take the air out of glass cups and put them on the skin to create a suction, but he used plastic cups and a pump. I didn't plan on doing it but he told me about it during the massage and we decided to try it afterward. The cups were applied on my upper back and neck and remained there for 10 minutes. As you can see, it leaves huge protruding marks - this is normal and was expected. They slowly faded and went away after about five days, but during that time I had to cover the neck ones with makeup, collared shirts and my hair.

I would post a Web link, but unfortunately I couldn't find a reliable Web site that even explains cupping, much less says that it works. The idea behind it is to get the qi/chi flowing and bring toxins to the surface, leaving room for fresh blood to circulate underneath. Or something like that. It didn't hurt except for the neck ones and I think that was pain from the massage. In fact, the skin being sucked into the cups almost felt like a massage.

The bad news is I still had headaches (and neck soreness, but probably from the massage) the days following cupping, and my husband was so upset about it that he refuses to let me do it again. Normally I'd argue with him, but I can't find proof that this works, and it does seem weird and it leaves marks, so I'm going to agree with him and say goodbye to cupping.

So what's the dumbest thing you've tried for migraine relief?

A Warning to Health Bloggers

Last week my neurologist's office called to cancel my appointment, and I had a bad feeling it was because of this blog. Unfortunately, I was correct.

First I'd like to admit my fault. I'd never used names of doctors' offices in the past, but for some reason I did use the name of my latest neurologist's office. I also described my appointments in detail and did not exclude my frustration. After eight years of headaches/migraine, it's hard not to have feelings of frustration.

My goal in this blog is and has always been to share my struggle with chronic headaches with others so that together we can find a way to bash these painful life interruptions. You can see this in my blog's description to the left. I also aimed at keeping a positive tone, which I think I've done to the best of my ability. I've always been honest though because I don't want to put up a front; I want to express myself and be real in this blog.

Yesterday I received a letter from my (now former) neurologist, the fifth one I've seen. She discovered my blog while setting up her practice's new Web site and was not happy that I disclosed information about our sessions. I'm not going to say much about the letter because I would again be disclosing information that she doesn't want to make public, but I will say that she makes some good points. While I didn't name names, I did name the practice and did share information about my appointments without her knowledge, and that was wrong. At the same time though, her letter is pretty derogatory, particularly her thoughts on blogs in general. I personally find value in the online migraine community, and I believe that neurologists could benefit from reading our blogs every so often to understand our point of view and what we're dealing with. In fact I'm almost pleased that my neurologist read my blog. I hope she keeps what she read in mind when she treats future patients.

So my lesson to other health bloggers is unfortunately an obvious one that I somehow overlooked until now. Don't blog about your appointments in detail and don't divulge information that could identify your doctor. Yes this information can be helpful to others, but it can also go too far. Also, inform your doctor that you keep a blog and make sure he or she is aware that you write about your appointments.

Note I've removed all identifying information - whether it's in posts or comments - from my blog.

Arteriovenous Malformations (AVM)

Perhaps my head has been in the sand, but I just now heard about Arteriovenous Malformations (AVM) through an article that popped up on my "migraine" google alerts. I didn't find much helpful info when I googled the term, except for this.

Does anyone have any experience with this - have/had it, been tested for it, etc.? It looks like there can be few symptoms, one being headache, and the only way to test it is a CT scan or MRI, which I've never had due to cost (even with insurance). Should I ask my neuro about this? Should I be worried?

I survived my first Tui Na session!

I know it sounds ridiculous, but I've been dreading my first 30-minute Tui Na massage. The 5-minute "previews" I've had at the end of acupuncture just about made me cry from pain, so I didn't know if I could handle this one.

Well I'm typing this after my massage, so obviously it didn't kill me. It was definitely painful though! Apparently I have really tight back, shoulder and neck muscles and big knots. I don't know if they're from my headaches or if they're causing my headaches (famous chicken/egg dilemma). But I'm going to try it a few times to see if it helps.

My headaches are getting much more frequent - I've only had five days this month without one - so I'm going to call my neuro tomorrow to see if the new clinic is accepting my insurance yet. I haven't been to a neuro since April which is ridiculous. If they're not accepting my insurance, I'll go to my previous neuro. I really liked him, but I felt he ran out of options with me. But I have to do something!!!

Invisible Illness Week - Free Online Seminars

I normally don't post back-to-back, so if you missed my post on massage, please see below.

But I couldn't resist writing a quick note on the Invisible Illness Week free online seminars.

Jasmine's blog post summarizes it with links. You don't have to catch the seminars live - you can listen afterward too. Thanks Lisa for arranging these seminars!

Goodbye Acupuncture, Hello Tui Na Massage

I've been seeing an acupuncturist once a week for about 15 weeks now. Acupuncture, from what I've read, generally works for those with headaches in 3-12 visits, so I knew it was time to give up. Today's session was pretty rough. I'm having a menstrual migraine and have all the associated symptoms...fun. My acupuncturist was convinced he was going to get rid of the migraine so he put needles all over my head. It hurt to talk and even smile. After maybe 30-40 minutes (I was dozing on and off), he took the needles out and I still had the headache, so he tried other points on my feet, legs and hands for 10 minutes. That didn't work either, and he kept shaking his head and said how that works for almost everyone. I sensed that he was about to say that acupuncture wouldn't work for me, so I said it for him. I had an alternate in mind though.

During some prior sessions, my acupuncturist, when he had time, would do a painful head/neck/shoulder massage at the end of some treatments, so I asked him if I could just do the massages from now on instead of acupuncture. I was paying $40 a session for acupuncture, and 30 minutes of massage is $45, so it's not too much more (of course my husband, who wants me to quit it all, just about had a cow when I told him). My acupuncturist gave me a massage at the end of my session today and I told him I didn't think I could stand 30 minutes of it (it HURTS) but he said he would start lighter to loosen my muscles and it wouldn't be that bad. I was lying face down today and at one point I had to lift my head so he'd stop because the pain was making me feel faint.

The type of massage is called Tui Na, described here - note this is just a random Web site I found from a google search, not my acupuncturist, but I liked the description.

I'll probably try this for two months or so to see if it helps, and boy do I hope it does.

Comprehensive Metabolic Panel Results

I saw my internist for the second time last week. I'm probably going to continue seeing him as my "family doctor" since I don't really have one, but I'm giving up on him for migraine help. He again encouraged me to see a neurologist, and he didn't have any other advice to offer. Since my current neuro who left the old clinic to start her own clinic is in the process of getting my health insurance added, I'm still in waiting mode there.

My internist was nice enough to let me go through a list of questions (no sarcasm here; some doctors rush you out as quickly as possible), and one of my questions was if I should get my liver tested, because some people have commented on this blog about this and also I've been on so many meds the last few years, I wanted to make sure it was ok. So I had a "comprehensive metabolic panel" blood test, which also tested my kidneys and other things.

Everything was normal. But, once again I've ruled out one more thing, so that's less to worry about!

Book Review: TMWtEiIhHaM

 

I'm going through a headache book reading spree, and my first review is the book with a mouthful title, "Tell Me What to Eat if I have Headaches and Migraines" by Elaine Magee, M.P.H., R.D. The foreword was written by Frederick Freitag, D.O., Diamond Headache Clinic.

This was an overall informative book of foods and drinks that commonly trigger headaches. I'm sure you've heard all about these, but here's a list (not all-inclusive, of course):

• chocolate
• caffeine
• red wine
• tyramine (aged cheeses, alcoholic beverages, some processed meats, avocados, overripe bananas, chocolate, nutes, seeds, pork, venison, soy-based foods
• nitrates/nitrites, MSG, & other possible additives
• aspartame
• fatty foods

Other tips:

• Eliminate suspect foods from your diet for 1-4 weeks
• "Ok" cheeses are: cottage cheese, cream cheese, Monterey Jack, and fresh or low moisture mozzarella
• Women 31 or older should take 320 milligrams of magnesium to help with hormonal headaches
• Nitrates/nitrites are mostly in cured meats and are usually on the ingredients label

What stood out as very negative to me was the part on MSG. I have MSG intolerance not related to my headaches and therefore have a lot of knowledge on the subject. The section only listed products that contain MSG and didn't even mention hidden names such as autolyzed yeast extract. The book is from 2005, so there are lots of new products not mentioned that contain MSG! Plus, some products now do not contain it because of the organic trend. And, some recipes listed in the book could easily have MSG in them if you're not careful.

This was a good intro to nutrition related to headaches, and it's a quick read, so I'll let you decide if you want to look into it further.

I'm still putting off going on a migraine trigger elimination diet because I'm enjoying food too much after ending my gluten-free diet.

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Headache update: I only had two headaches on vacation and they started in the evening my last two days and didn't get bad enough to require meds. It was great! I had a migraine when I got back but I took the red-eye flight and didn't sleep, and then napped the whole next day, so that was my fault. When I saw my acupuncturist Monday he said my neck and head felt great - hardly any knots and muscle tension like I usually have. He said I should take vacations more often. I wish. :)

Allergy test

I met with an allergist last week to see if allergies were giving me headaches. I had awful allergies - ragweed, dogs, cats - as a kid, but I grew out of them (either that or they went away when I moved to the city). But I thought maybe they transformed into headaches instead. Crazy thought, but I at least wanted to rule it out.

So I got a scratch test (see image below). This is not me - I wanted to take a picture, but I wasn't allowed to move my arms so that would have been difficult.

(Phanie/Photo Researchers/NY Times)

The results were expected - allergic to ragweed and molds. Certainly not bad enough to cause headaches or even bother me much. I even had the doctor check for foods - tomatoes, chocolate and something else I forgot. No reaction, but I could still have intolerances. So my next plan is to do a food elimination diet to see if common migraine triggers affect me. I've checked out a ton of books from the library and hope to do some book reviews soon. I probably won't start the diet for a few weeks though because I just finished the gluten-free diet and I need a break from restricting my diet. That's a headache in and of itself!

A few more brief updates: acupuncture's going well. I've switched to private sessions with deep neck massage and they seem to be helping. I'm off all prescription medications (so no more Lyrica or Lexapro, woohoo!) except for when I have headaches; if they're bad enough I'll do rotations of Toradol (for REALLY bad migraines), Butalbital, 800 mg Ibuprofen and Aleve.

I'm also taking the following supplements:

• fish oil
• magnesium potassium
• B complex
• Iron (not for headaches but because I have low levels)

On a more personal note, my husband and I were talking the other night and I told him I was mad at God because he has the ability to heal my pain but he won't. I took it back right away and said that Christians shouldn't be exempt from pain. This is earth after all; the pain-free time is yet to come (heaven). But I still felt bad, and I feel like I settled it with God at church this morning - I had a feeling of peace and joy throughout the entire service and I asked God to forgive me...and yes, to heal me. It doesn't hurt to ask. God might want me to use my pain to witness to others. So if you're not religious and this paragraph is gibberish to you, know that God's helped me through the pain and really does provide strength and peace. I'm not saying he'll take it away, but there's always hope. :)

Blog Re-redesign

I decided to make my blog a little more migraine-friendly. My last design seemed too busy. I probably won't keep this one forever either, but it'll do for now. Also, regarding design - I just got a digital camera so I'm hoping to put up more pictures with my posts. Woohoo!

And one more bit of housekeeping; regarding the post below, I still have three free codes left. E-mail me if you're interested!

Hope everyone's doing well, or at least as good as possible. :)

Technology: New Headache App

I received an e-mail from BetterQOL (Quality of Life), a company that creates technology tools for patients and physicians. A headache sufferer and migraine specialist got together to develop iHeadache, an app for the iPhone and iPod touch (Blackberry coming soon) that tracks symptoms, meds and disability and uses the data entered to create reports for your doctor.

You can read more about the app here.

I don't have an iPhone or iPod touch, so I haven't tried this. BUT, I have five codes for a free download. Note - before I said it was a 30-day trial, but it's actually the code itself that expires in 30 days; the download is free to use as long as you'd like! If you're interested, e-mail me at waronheadaches at gmail dot com and I'll send you details!

(Image by BetterQOL)

Gluten Free Diet: The End

I'm a little ashamed to write this post. I feel like I might be letting people down. Two months or so ago I decided to do a six-month gluten-free diet to see if it helped my headaches. My celiac disease tests came back negative, but I figured I might be gluten intolerant. I blogged about going gluten free and was excited to be trying a natural way to fight my headaches. It wasn't too hard either, but I think that's because I'm used to reading food labels due to my MSG intolerance. I thought I'd miss cupcakes and such, but I found some awesome gluten-free places in town that make gfree cupcakes, zucchini bread, etc. and they were delicious! The one thing I did miss was pizza (which is odd because I hated pizza as a kid but it grew on me later in life). I tried gfree pizza and the crust, my favorite part, was disgusting. However, I only tried it at one place and was scared to try it again. If you do want to try gfree pizza, I hear Bella Monica's is good - they have a restaurant in Raleigh and Whole Foods carries their pizza - also they were very helpful to me on Twitter while I was gfree.

One more quick tangent. A lot of people don't understand Twitter or think it's dumb, but I am an advocate. If you want to try going gluten-free, you can search "#gfree" and find a ton of people who are helpful in answering questions or sharing tips. I also use Twitter for migraine support. If you find the right people, it's a great community. So a special thank you to my gfree friends who helped me the last two months.

But, I'm sorry to say I've ended my gluten-free diet. I saw an internal medicine doctor last week and we discussed my headache history and things I'm currently trying, including the diet. He said that I could keep trying it if I wanted, but I probably would have noticed a difference by now. Also, my acupuncturist said he supports having a balanced diet. So I slowly started adding gluten back the past week, and my headaches haven't gotten worse.

In fact, they've been better, and I think it's due to my acupuncture. I've been doing private sessions where I lie down and the acupuncture points are more intense (somewhat painful). Also, my acupuncturist has been doing deep neck massages at the end of the last two sessions, and I think that is making a difference. It's painful to the point where I'm almost in tears and am sore for days afterward (I go once a week) but I honestly think this is what's helping my headaches. I've had maybe one or two headaches a week now instead of every day or every other day.

I'm terrified to say I'm getting better, but I'm definitely making progress. :)

Oh and also my internal medicine doc gave me permission to taper off the Lyrica and Lexapro, so soon I'll be taking only vitamins and minerals. WOOT!

War on Headaches Design

Edited: Ok I think I'm sticking with this redesign for a while. It's a free background I found online, but it'll work.

Thanks for the feedback on my earlier change. I decided it was too bright so I'm back to a dark one. Don't want my blog triggering any migraines. That'd be extremely counterproductive. ;)

Internal Medicine Doctor

Gotta keep this one brief since I'm on my lunch break. Quick update...

My mom who is a nurse wanted me to try a different avenue other than neurologists since I've seen five with no luck. She recommended seeing an internal medicine doctor or "internist" (not to be confused with "intern"). They're like primary physicians but more in-depth and according to the American College of Physicians (see the link), "they are specially trained to solve puzzling diagnostic problems and can handle severe chronic illnesses and situations where several different illnesses may strike at the same time."

The bad news is, of my migraine friends on Twitter, only one has had luck with an internal medicine doctor. The good news is, someone HAS had luck with one. My desire has always been to find the cause of my headaches to treat them, and I feel that an internist might be the way to go since they cover such a broad spectrum.

Another reason for seeing an internist is I want to get off Lexapro and Lyrica which do not work and I need a doctor to do this. My neurologist will not be happy with me, but I haven't seen her since April and her new facility is still trying to get in United Healthcare's network (my insurance), so there's no telling when I'll be able to see her next.

My appointment is in one week. Wish me luck!

P.S. - When I spoke to appointment scheduler and asked if they handled chronic headaches, she said they'd see me and then refer me to a specialist, but I said been there done that - I want to be treated by an internal medicine doc and find the cause, and then she had me speak to the triage nurse who said she'd have to schedule the appointment first to see what they could do.

Overwhelmed

I'm overwhelmed with - everything.

I'm in a hole at work and I can't dig out. I think it's because all I've had lately is writing assignment after writing assignment, and I have major trouble concentrating which I blame Lexapro and/or Lyrica for. This is causing me lots of stress.

Plus I've been having trouble sleeping which throws off everything.

Also my headaches seem to be out of control. At least I haven't had any really bad migraines lately, since I've said goodbye to hormonal birth control. But I still have almost daily headaches, and some get so bad that medicine doesn't have an impact on them.

But I always try to end on a positive note, so here are some things I'm grateful for:

* God. He fills me with hope and gives me strength to deal with my pain.

* My acupuncturist. Although the six sessions I've had so far don't seem to be helping, I still have hope. Some of my fellow blog and Twitter migraine sufferers have had success with acupuncture and say it takes a while. Today my acupuncturist told me to show up at 2:00 next week, which is when community acupuncture ends, because he wants me to do a private session where I can lay down - for the $20 community acupuncture cost!!! :) I'm excited to try another approach.

* My job. Even though it's stressful, my boss is flexible with my doctor's appointments. Plus, I'm blessed to have a job and health insurance.

* Family. They are all supportive and understanding. Plus my husband and I finally booked a trip to Seattle for next month. Can't wait!

* "No." I've finally been able to say no to people (I don't have a choice really) and it feels great. Having a more open schedule and taking a break from things is wonderful...or at least it will be once work calms down.

Remember that no matter what you're going through, it always helps to count your blessings.

One Month Gluten Free

First of all, an inspiring read on migraines and going gluten free. This blog post is by the person I met on Twitter who inspired me to try a gluten-free diet. She has celiac disease, and when she cut gluten from her diet, her migraines went away. While I do not have celiac disease (according to a blood test) I'm still thinking there could be a chance I have some level of gluten intolerance, which is why I'm trying a gluten-free diet. Here's her blog post, My Migraine Story - A Gluten Free Miracle.

Second, a VERY helpful read if you're planning to start a gluten-free diet, How to Start Living Gluten-Free.

And to add my own experience...I started a little over a month ago by eating up all my food and giving away extra flour, Bisquick, Kashi bars, etc. Then I went completely gluten free immediately by eating mostly unseasoned and unbreaded fruits, vegetables, meat, rice and potatoes. Throughout the past month I've tried gluten-free foods from Whole Foods, Kroger, Harris Teeter and Earthfare. They all have pretty good selections, and I was happy to learn that Kroger, which is my primary grocery store, labels gluten-free items (such as cookies or cereal that would typically contain gluten). When I shop I carry a list of ingredients that contain gluten so I can check foods I'm unsure about.

For breakfast I have gluten-free breakfast bars or fruit, for lunch gluten-free frozen dinners or a salad, and for dinner I'll usually have a veggie, rice and meat. I've also tried GF pasta (made from rice or other grains), quinoa (pronounced KEEN-wah), which is a healthy herb/grain that you can eat like rice or use in recipes like meatloaf, and Tamari - gluten-free soy sauce (yes, soy sauce contains wheat). For snacks, I have corn chips or gluten-free cookies. Eating out has not been too difficult. I'm used to having to check to see if restaurants have MSG-free options since it makes me sick, so now I check online menus for gluten-free options as well. Many places like PF Changs, Chili's, and Outback Steakhouse even have special gluten-free menus online. I've also tried a kitchen in Raleigh that lets you pick up meals that are guaranteed gluten free. They have a killer zucchini bread! And just yesterday I bought a gluten-free chocolate cupcake from a bakery selling at the local Farmer's Market that was out of this world! :)

I went an entire month without cheating, although I wasn't 100% strict either. I did check my pills and lip gloss, but I don't worry about lotion, shampoo, makeup, and cross-contamination issues. Since I don't have celiac disease, I'm guessing I don't need to be super-sensitive. BUT yesterday, I could not resist a bite of wedding cake and the crepes station at a wedding. I wanted to see if I'd get an instead headache. However, I already had a headache before the wedding, and although it did get worse, I think it's because of the two strawberry mojitos I drank!!!

So the big question is have my headaches improved? In June I had 26 headaches. Today is July 12 and I've had nine headaches so far. But the three non-headache days were in a row, which is unusual.

Of course if you read my blog, you know that I'm also doing acupuncture, Chinese herbs, and some different types of vitamins. Any of those might be helping.

For now, I'm going to stick to my gluten-free diet for five more months, or at least that's my goal.

P.S. Thanks for all the gfree people on Twitter who have been happy to answer questions and who post helpful tips!!!

Acupuncture Update

I've had four acupuncture visits so far; one per week. Unfortunately I'm still having headaches almost every day. I had a total of 26 headaches in June. A friend told me today that she saw a Duke study on acupuncture and headaches, and it took about 12 sessions for improvement, so I've decided to give it that many. Here's an article on acupuncture - it explains how it works, which I wonder each time I go! Thanks to @ManageMigraines on Twitter for the link.

In addition to the community acupuncture, I've been doing what I guess is acupressure where I tilt my head to the side and use that side's hand to push on the opposite side's area between my neck and shoulders, if that makes sense. When I push it, the pain radiates to my head. I'm supposed to push it until the knot that's there breaks up.


Also, as you can see from the picture, I'm on lots of fun non-big-pharma pills. So in addition to the Lyrica and Lexapro that my neuro put me on and I'm going to get off as soon as I see her next, I take the following: women's multi-vitamin, iron (not headache-related), magnesium, fish oil/omega-3, vitamin B complex, Chinese herbal migraine pills which are the black beads in the picture (10 twice a day) and 800 mg Ibuprofen or 2 Aleves when I have bad headaches.

My gluten-free diet is going very well. After eliminating food I couldn't eat from my kitchen, I printed gluten-free menus from restaurants that have them, printed a list of ingredients to avoid, and visited several different grocery stores to see their gluten-free foods selection. I'll blog more about it soon.

Hope all my American readers have a wonderful Independence Day, and I hope all my readers are headache-free for the weekend! :)

Is there a correlation between car accidents and migraines?

Since my last post, I've had acupuncture visits #2 and #3.

Visit #2 was interesting...and painful. I told the acupuncturists (husband-wife team) that I had a headache, and they put needles in my hand and feet like normal. Then they asked if my headache was going away, and I said no, so they gave it more time and then asked again. I thought to myself, are they really going to keep me here until my headache goes away? Because a few thin needles aren't going to make that happen. I told them I still had a headache, so they took out the needles and said they were going to do a stronger treatment. They put about 15 needles in me - on my feet, legs, hands and head - the sides above my ears, temples, and one in between my eyes right above my nose.

So what does this have to do with car accidents? The husband of the husband-wife team felt my neck and said "oh my" etc. He asked if I'd ever been in a car accident, and I told him yes a bad one when I was a kid - like in 5th or 6th grade - but I wasn't hurt. He said, are you sure? Then he started doing an acupressure/massage type thing that HURT. I could feel it up through my head, and my headache got way worse when he pushed on my neck. Then he lifted my arm and pushed down on a spot between my neck and shoulders and did the same for both sides. It gave me a sharp intense pain. Finally, he took out the needles and put a liquid on my neck that felt and smelled like IcyHot.

He asked how my headache was. IT WAS GONE. I couldn't believe it. Unfortunately, it only stayed gone for 30 minutes; then I got a migraine and had to take drugs.

I'll write more about my acupuncture appointments later, but I'm wondering, is there something to his car accident theory? It was so long ago, and I didn't have a single injury except for a seatbelt burn on my arm, but the car was hit so hard it spun a few times. And I've been in two more accidents within the last few years, although I already had migraines by that point.




I decided to do a Twitter poll to see if other migraine sufferers had been in accidents. A couple of people pointed out that the poll, which is above (and the link is below), wasn't specific enough. It didn't ask, for those who said yes, what happened first - the accident or the migraines. That's a good point and a weakness in the survey; another weakness is the number of votes - 17, which isn't much for a poll. That said, I still find it interesting that the majority of migraine sufferers have had a car accident.

As much as I researched, I could not find a study on the subject. Sure, some people get headaches directly after an accident, but what about years later? And if there is a correlation, what can be done? I personally have seen a chiropractor and physical therapist for my neck/headaches, with no success.

I'm sorry this post leaves so many questions unanswered, but I'd like to hear what other headache sufferers have to say. Do you think there's a correlation between headaches/migraines and past car accidents, and can anything be done about it?

Link

Sticking to Acupuncture

I actually don't know if I'm sticking to acupuncture, I just liked the play on words. :) Anyway, I did finally try acupuncture for the first time this week, thanks entirely to @stonetree on Twitter, who told me about community acupuncture. As you can probably guess, community acupuncture takes place in a room with chairs and anyone can walk in and have acupuncture. Because you're with other people instead of a private room, they charge a cheaper rate. I'm able to get acupuncture for $20 a session! The place I found does this once a week. The bad news is I'm in a decent-size city, and I only found one place that offers this; so if you are in a small town you may need to drive to the nearest city to do community acupuncture.

Everyone's been asking me what it's like, but it's pretty simple. The acupuncturist sticks needles in you. I'll try to be a little more descriptive though. I had about eight-ten needles in me - on my feet, the insides of my legs below my knees, elbow area, and wrists and hands. It didn't hurt until the lady pressed down on the needles after inserting them; that felt like when you push on a bruise. Also, I didn't move much because it would hurt if I moved the wrong way. The lady said that the 800mg Ibuprofen I took that morning for a headache (what else) may have masked the sensation.

The needles were in me for about 45 minutes. Someone was there when I first got there, but she was just finishing up, so I had the room to myself. The acupuncturists (a husband and wife team) did talk to me for a little while and they told me the main reason people go to their clinic is for headaches and back pain. The one acupuncturist said I WILL see results after about 4-6 visits. We shall see.

Also, they told me to take fish oil and vitamin B, so I'll be looking into that.

And one more thing - if you try this, check to make sure your acupunturist is certified!

Going Gluten Free

Lately I've been VERY optomistic about my migraines/headaches, and for good reason. It all started when I was on Twitter. I stumbled across @GFillustrator and found out that her migraines improved when she stopped eating gluten. I decided to get tested for Celiac Disease, since I have some of the symptoms. Well, turns out that I do not have it, but after all the research I've done, I've decided to try going gluten free for a while anyway, to see it helps my head and stomach.

Some of you may have already tried this or may be currently gluten free - if so, please share your experiences. If you want to try going gluten free, I'm going to chronicle my experiences on here, so I invite you to try it with me! I'll still post other things as well (teaser - I'm trying acupuncture for the first time Monday!).

The first step to going gluten free is research. Thank goodness there are lots of resources online. Here's just a handful:

* Celiac.com: this post has a list of unsafe ingredients

* What you can and can't eat, and meal suggestions: here

* Excellent headache/migraine blog with a post on gluten: here and be sure to read the comments!

* Blog that lists restaurants with gluten free items/menus: Hold the Gluten

* Blog post - You've Got Celiac, Now What?: Celiac Bites

* It's important to still get essential nutrients when you're trying a gluten-free diet, so check this out.

* Talk to friends as well. My friend told me about a local place in Raleigh, NC that will put together gluten-free meals for you to pick up if you don't have time to cook but don't know where to get gfree food either: Rosie's Plate. You may have one similar in your area.

Next step is emptying out the food in my kitchen and then adding what I CAN eat.

*6-8-09 update* This week is National Headache Awareness Week, which means there will be TONS of headache news stories, blog posts, etc. Stay plugged in this week and you might learn something new! I'm hoping the news stories won't be the same old stuff that everyone knows already. Either way though, awareness is good!!!

What's the best pharmacy poll results, and anniversary wishes...

CVS and Wal-Mart tied in my best pharmacy poll...but only 15 people voted, so I'm going to say the results were inconclusive. I think it's a tough call - all pharmacies have positive and negative qualities, and it depends on factors like where you live; for example, the CVS where I used to live sucked because it was the only pharmacy in the area and the lines were always long. The one I go to now though hardly ever has a line (which is odd because it's right beside a hospital). I like the bucks I "earn" to spend at CVS (on nonprescription items, of course), but I sometimes wonder if Wally World would be cheaper, or a grocery store pharmacy more convenient.

Speaking of pharmacies, ever wonder if the pharmacy tech at the window thinks you've got issues? I mean, I've tried a LOT of medications, and meds for migraines can be meds that treat high blood pressure, seizures, depression, bed-wetting and schizophrenia. No offense to anyone who has these issues, but sometimes I wonder what they think of me. A college friend of my husband's is a pharmacist and his fiancee is a patient - it's how they met. They joke that he decided to marry her, even after knowing what she was taking.

Glad my husband decided to marry me, and stay married to me, knowing about my migraine/headache issues. And knowing that those issues bring about a whole other set of issues. Happy five years, honey! (May 29, 2009)

News Item on Levadex

I don't think I've written about drugs in clinical trials, but I received an e-mail from the National Headache Foundation announcing that Levadex had successful Phase 3 trials (see this NY Times article), and this sounded different and intrigued me. In fact, I actually listened to a recording of the Webcast.

Levadex is a non-triptan abortive treatment for migraines. It's a new inhaled version of dihydroergotamine (DHE), which apparently is administered as an injection at the ER and can be taken as a prescription nasal spray called Migranal. Oddly, I'd never heard of Migranal. Has anyone tried it?

MAP Pharmaceuticals still needs to do another long-term follow-up study and other trials that will take about a year, but it sounds promising!

NO MORE HORMONAL BIRTH CONTROL

Background: I've been on some form of hormonal birth control since I was 17 or so, around the same time I started getting headaches. I was on it for cramps and because I had slightly irregular periods and heavy flow (which I'm going to have again soon, woohoo!). I started with different kinds of The Pill, and then Ortho Evra Patch, then nothing for a while because I suspected it was giving me headaches, but after maybe six months I didn't notice a difference, so then I went on The Pill without breaks for a period, which my neurologist suggested. Of course then I had break-through bleeding and bad headaches. Then my gyno talked me into getting a Mirena IUD for maybe two years, which you can read about here and most recently I had the Nuva Ring, which you can read about here.

So last week I took out my Nuva Ring (without my neurologist's permission; please don't get the impression that I'm saying this is right because it's NOT; I just got fed up and made a quick decision on my own). After a few days I got a light period and I've had some nausea and diarrhea which I'm guessing are withdrawal symptoms. I've still had headaches but I'm hoping they'll improve.

I've also been exhausted. I slept all day today and even missed church, which makes me sad. But God knows how I feel, and he understands. Plus, as my mom told me - it IS a "day of rest"! I haven't worked out in three weeks so I'm sure that's not helping.

I have a new theory, which I'll blog about soon, but for now I just wanted to put in writing that I'm never ever going on hormonal birth control again. My husband (who supports this decision) says I'm a broken record because I've said this before, but I mean it this time. My body does not like those crappy synthetic hormones, and I'm convinced that my headaches will improve as my cycle gets back to normal.

And no, I'm not planning on having kids any time soon, no offense, future kiddos.

Migraine with Aura

Try this: hold your hands in front of your face and spread your fingers. Move your hands in a circular motion. Now pretend each fingertip is a bright flashing light. Welcome to the world of auras.

I'd never been the "migraine with aura" type person until now. I had my second ever aura the other day. The first time it happened I talked myself into thinking I had looked at the light too long and it was my imagination. That was months ago, but the exact same thing happened again. If you're not familiar with aura, read this. I wanted to see if I'd get a migraine afterward so I didn't take any meds, and sure enough, the migraine came.

I still have slight doubts. The lights only lasted maybe 10 seconds. I get migraines or headaches all the time, so who's to say I wouldn't have had one anyway? Plus why don't I get an aura with every migraine? I'm a little freaked out and I kinda want to get an MRI, but I'm going to tell my neuro about it and see what she says. It sucks that I can't get an appointment until the new clinic opens in June.

Meanwhile, I'm tempted to stop all my meds and take out my Nuva Ring. I know that you shouldn't do that without a doctor, but I've been on Lyrica and Lexapro and birth control before and I know to go off them gradually (well not the birth control). My headaches are worse than ever, and I need to do something.

My current migraine is an 8 out of 10 and is heading toward 11, so I'm going to take my emergency concoction (Seroquel, Phenergan and Toradol) and go to bed.

*Update* The medicine combo knocked me out all day, and I slept until 4:30 in the afternoon. I didn't even call in to tell work I'd be out (they called me around 10 to make sure I was ok). I still have a slight headache, and I'm so fed up that I took out my Nuva Ring a few hours ago. No more hormonal birth control for me...my migraines are always worse with it. My neuro's going to be pissed...

My new headache clinic is changing

I received a letter in the mail saying that the neurologists at the Headache Clinic are breaking away from the hospital to start their own clinic.

This means that I am no longer a patient there because it appears that they don't have any other headache specialists. The letter said that I could have them transfer my records to the new place or I could visit two other nearby headache clinics, one in Greensboro (an hour away) and the other, ironically, is my former neurologist (neuro #4).

I've decided to have them transfer my records and I'm going to keep seeing the same neurologist because I want to try something different - perhaps alternative things such as biofeedback; or she might look further into why my sleep test showed some irregularities.

I'll keep you posted when I get a new appointment.

Misery Loves Company

If you click on this link you'll find a chart that shows different health conditions and sufferers' participation of vs. benefit in online social networks.

It shows that people who suffer from migraines are more likely to participate in AND benefit from social networks.

I knew I was doing this blog for a reason!

P.S. - Couldn't think of another word for "sufferers" - but I'm fully aware that I overuse this word. I'm not in a constant state of suffering, and I hope you're not either! :)

News Item: 6 Reasons Your Headache Treatment Is Failing You

I feel that my headache treatment is failing me, so here's an appropriate article. Not the most helpful, but appropriate. Thanks, Jessica Ryen Doyle of FoxNews.com and @MigraineInfo on Twitter.

House, er, blogkeeping, update: Instead of adding a blog roll, I'm officially "following" headache/migraine bloggers through the Blogger feature. To see these blogs, you should be able to click on my full profile to the left. If you want me to start following you (not literally of course - creepy!) just let me know!

Neuro Appointment - More sleep tips

My Headache Clinic appointment got moved because of a scheduling conflict, so I had it last Monday, about two weeks after my last appointment. I thought it'd be a waste of a $40 copay, since I just saw my neuro, but it was actually a good appointment.

I told her how tired I was during the day, but it still takes me about 10 minutes to fall asleep at night. She asked what was going through my head when I was trying to sleep, and I told her mainly the next day's schedule. So here's the advice she gave me:

* Write down a to-do list about 15 minutes before going to bed each night. That gets it out of your head and on paper. Then when you get in bed, block out words and instead visualize a picture, like a beach scene. Thinking in pictures instead of words slows your brain waves which is what happens when you're sleeping.

* My neuro also gave me Ambien (the generic version) again to try for five nights, which I've just finished. I've been sleeping fine, but I'm still exhausted during the day, so I don't think it helped.

She also gave me 800 mg of Ibuprofen to take up to four times a day, no more than two days a week though, for when I have headaches and the Maxalt doesn't work. I had been taking Aleve, which doesn't always work, so she said I needed something stronger. I tried the Ibuprofen for one headache and it didn't work, but yesterday I took it and it eliminated my headache! Woohoo!!

I tried refilling Maxalt and I can't do it yet, so I literally get four a month from my insurance and that's it. I'll have to ask for samples next neuro appt. Speaking of which, my next one won't be until July, because she wanted to give the meds I'm on and my sleep schedule time to work. That will save me some copays, so I'm happy!

Pharmacy Survey

Just added a survey to the left - please vote!

I just got $5 extra bucks from CVS, but it's because I spent a fortune on prescriptions recently. I've heard Walmart's prescriptions are cheap, but the Walmart near my house is awful and I'd get a migraine just from visiting it, so it's worth the money to avoid it. But are some pharmacies cheaper than others? Do some have shorter waits than others (this probably depends on the location). I've been going to CVS since they were Revco (no I did not remember the name, I had to ask my husband - my memory is not that good!), and while I have few complaints, I'm curious to see what pharmacies you guys like.

Btw, I visited my neuro earlier this week; I'll write a blog post soon on how that went.

Have a terrific and headache/migraine-free week!

Check out these blogs

If you've visited my blog, you've probably visited the blogs of other headache sufferers. I'd like to use this post to share with you some of my favorites since I'm too lazy to create an official blog roll on this site.

Not all of these are headache-specific, but most are.

Fly With Hope
My Life with Fibro
Migraine Chick
The Daily Headache
The Migraine Girl
No Extended Warranty

Please feel free to leave a comment and add your own blog or others that you follow!

Happy Easter!

Sleep study results

I had my second appointment at the new headache center this week, and I got the results of my sleep study.
I don't have sleep apnea, but I did have a few leg twitches and it took me a while to fall asleep (I was in a strange place and had wires stuck to my body). But she did say that I woke up an average of 10 times per hour, particularly in the first stage of sleep.

Here's the extremely disappointing part, and I'm more mad at myself than anything. She put me on Lyrica and said that helps people get more restorative sleep and it should help me. I've tried Lyrica before. But did I tell her this? No. Why, I don't know. Up until that point, the appointment hadn't gone very well, because my memory sucks and she wanted me to tell her about my headaches without looking at my headache diary, and I can't count how many were mild and moderate (I remember the severe ones of course), they just all blur together, and she was saying there was a disconnect and it seemed like she was accusing me of lying. Plus, she had given me two medications during my first visit that I had tried before, and when I had told her that, she told me to try them again. So I figured she wouldn't care this time.

So, now I'm on the following:

- Lyrica
- Iron because my blood test showed I have low iron
- Maxalt because I told her the Imitrex made my throat tight - I've tried Maxalt before too, and I took it yesterday and it didn't help, but whatever.
- Regular Magnesium (magnesium oxide) instead of Magnesium Potassium Sulfate because my neuro recommended trying a different kind if it was giving me stomach issues, although she said that it's not common for any type of magnesium to give people stomach problems.
- Vivelle dot (fake estrogen/progestin or whatever patch) - I put it on Monday afternoon and took the Nuva Ring out - goal was for me to have a regular period and then tomorrow morning, I start the Nuva Ring again, and this time, I shouldn't have constant spotting. Problem is, I didn't start the normal period until just now, and it's not going to have enough time to finish before the Nuva Ring stops it. At least I don't think it would. But I'm going to follow the doctor's orders.
- still on Lexapro and I still have the "emergency" migraine concoction; however, my neuro said I CANNOT take Butalbital/Fioricet again because of rebound headaches. :(

I did some quick online research on sleep disorders and didn't find anything that fit my symptoms. I don't snore, I don't have trouble falling asleep, and I don't have trouble staying asleep. I rarely notice waking up throughout the night, so I don't know what's going on.

I may see a sleep specialist in the future, but I just spent $450 on medical costs so I'm not adding on to my medical bills any time soon.

I'm extremely frustrated. My husband told me yesterday that he wouldn't mind all my medical bills if there were results, but there aren't any. My headaches are getting worse. And I feel like I'm running out of options.

Wishing I could say, "April Fools!"...

Thank you, United Healthcare

This post is in reference to THIS post, where I explained that my health insurance, United Healthcare, decided not to cover my echocardiogram (to see if my heart had an abnormalty that was giving me headaches), after they had initially said they would cover it.

My awesome neurologist, Dr. Matthews at the NC Comprehensive Headache Clinic, who I'm not seeing right now because I'm seeing a new neuro at UNC Healthcare, submitted an appeal for me with all of my health records. In addition, I submitted my own appeal to United Healthcare.

Today I received a letter from United Healthcare saying that after reviewing the appeal, they decided they WILL cover the echocardiogram. WOOT!

I just wanted to say thank you, United Healthcare. You guys have been covering a lot of my bills lately, from my sleep study, prescriptions, etc. and I'm blessed to have health insurance so that I can continue to fight my headaches.

Also, I wanted to let patients reading this know that if this happens to you, SUBMIT AN APPEAL. Submit three if you have to. It's worth the try!!!

:o)

Migraine of the Year, other updates

I wanted to post a few updates. Last weekend, I had what I'm calling the Migraine of the Year. Wow, it was awful. It started last week - I had a headache just about every day, but it went away on Friday. So that night, I went out with some friends for drinks while my husband was chaperoning a church youth group lock-in. My hubby doesn't know this, but I drank and tall glass of beer. I normally don't drink and don't approve of drinking, and neither does my hubby, for various reasons that would take too long to get into, but over the past few years I've had maybe 4 drinks a year. I don't know if that triggered it, but on Saturday I woke up with a migraine...not a headache...a migraine - pounding, throbbing head with every movement, light sensitivity, etc. I took Butalbital (which my neuro wants me to try and stop taking because it can cause rebound headaches) because it's my go-to migraine drug. (Side note - I didn't try Imitrex (the generic version) because I took that a week before and it didn't help and I hate how it makes my throat all tight.) It worked for a few hours but later that afternoon, it came back full force. I took another Butalbital, and it brought my migraine down just a notch. So after a few hours I decided to take my backup: supposedly emergency-room-equivalent drugs that my new neuro gave me - the ones so strong I can't take them more than twice a month: Ketorolac (Toradol), Promethazine (Phenergan), and Seroquel. That knocked me out for the night, and I was too dizzy the next morning to get up for church, so I slept most of the morning. My migraine was gone when I woke up, but then it returned after taking a nap that I couldn't avoid later that evening. Then I had a slight migraine Monday and I felt like I had been in a car accident or been beaten up. I've heard the post-migraine feeling referred to as the migraine hangover. Now I only have a slight headache. It was SO awful, and I am terrified I'll have another migraine and won't have anything to take to get rid of it. I'd rather have headaches every day than migraines like that. I'm never drinking more than a few sips of alcohol from now on, in case that was the trigger.

Of course, I've been spotting more than a month, ever since I started the Nuva Ring, which I'm taking 12 weeks straight with no breaks for periods, so that might have something to do with it also. Could be hormonal.

Needless to say, I'm dying to see my neurologist next week. I'll get my sleep test and blood test results back. And speaking of test results, my previous blood tests to check for Factor V Leiden and hormonal problems came back normal.

Two quick news updates:

Check out this article on migraines - it actually mentions some things I haven't heard of that I might need to look into further.

Also, if you live in Michigan, I received a news release announcing neurologist and headache specialist Dr. Henry Hooker has joined the team of experts at the Michigan Head•Pain & Neurological Institute in Ann Arbor. Dr. Hooker will have a special focus on one of the most challenging head pain conditions – New Daily Persistent Headache. According to the release, New Daily Persistent Headache is unique in that the headache occurs daily from onset, typically in a patient with no prior history. It can continue for years without any sign of alleviation despite aggressive treatment. Various causes are suspected, including viral, metabolic, and neurotransmitter (brain chemical) disturbances.

I think that's it for now...I'll keep an eye out for the Today Show segment (see post below) and will post a link if it's online.

Have a wonderful, headache-free day and remember to take things one day at a time!

Headache Questions for the Today Show

My co-worker just told me about a Tweet she received from the Today Show (@todayshow if you're on Twitter) guiding headache sufferers to this Web site:

Do you suffer from headaches? E-mail us

Description: Are your days consumed with pounding headaches? Do you have questions on treatment or how to prevent them? If so, then e-mail us and Dr. Nancy Snyderman may answer them live on the TODAY show.

Wow, I have so many questions to ask. But I narrowed it down to one, which I've included below. Feel free to ask your own. And let me know if you find out when the segment airs!

My question:

I have been diagnosed with chronic daily headache and chronic migraine and am on my fifth neurologist. I'm convinced the headaches are hormonal related, and yet my neuros keep putting me on hormonal birth control (pills, patch, IUD, and now the Nuva Ring) with no break for periods to level my hormones. This always makes my headaches worse. If they are hormone related, what's another option to treat my headaches?

I'd love to know when this segment will air. Thanks!

Headaches and Water – The Fluid Connection

Honestly, I've had headaches all week and just finished writing a company newsletter and some press releases at work, so I'm a little tired of writing. So, the timing is perfect that I have the opportunity to introduce my first guest post! The writer, Holly McCarthy, is a freelance writer. Thanks for the contribution, Holly!

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Headaches and Water – The Fluid Connection

If you’ve never had a headache in your life, count yourself really lucky, because when one does come on, you literally feel like ripping your head off and putting it aside for just a little while. A headache is not like any other ailment – for one, it’s pretty hard to do anything else when you head feels like it’s about to split into a million pieces; and for another, medication tends to complicate the problem when your headache comes on for no apparent reason. So, if you’ve been suffering from this beastly ailment more often than you care to, you need to take a look at your relationship with water.

Water, you say? Yes, this pure liquid that is indispensable for the continuation of life is also important when you’re trying to keep a headache away. When your body is dehydrated, you’re likely to suffer from a headache. You’re also likely to be stressed out for inexplicable reasons, and because of this, are liable to more headaches. Dehydration is a disadvantage in more ways than one though – it affects your ability to think, and when compounded with a headache, well, you understand the point I’m trying to make.

On an average, an adult requires at least 8 glasses of water every day to stay healthy. Other liquids do not count towards this requirement, especially when they contain sugar or caffeine, because both these substances are diuretics and cause dehydration (and this makes colas pack a double whammy). You must drink water, and only water, although fruit juices that do not contain sugar or other condiments are ok because they bring you the natural vitamins and nutrients that fruits are rich in.

Spending a lot of time in air conditioned offices and rooms can also bring on dehydration as does not drinking enough water. You’re also at risk if your work involves a lot of travel or if you use electromagnetic devices like computers and mobile phones pretty often. Remember, you need to drink water even though you’re not thirsty, because thirst itself is the first sign of dehydration.

So the next time you feel a headache coming on, before you pop a pill or start tearing your hair out in frustration, drink a few glasses of water! You may have just found the perfect cure to an imperfect ailment.

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This post was contributed by Holly McCarthy, who writes on the subject of the sports management college. She invites your feedback at hollymccarthy12 at gmail dot com.