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?