National Headache Awareness Week 2010

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

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

Happy National Headache Awareness Week. Spread the word!

Occipital Nerve Block

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

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

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

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

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

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

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

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

Migraine Infographic, plus Migraine Twitter Chat

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

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

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

Treximet

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

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

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

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

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

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

When Medications Fail

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

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

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

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

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

Pain is Serious!!!

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

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

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

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

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

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

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

Adding foods!!! :) :) :)

Lately, I've been down in the dumps, big time. I think it's the Zonegran, but I can't go off it until I see my neurologist again, which isn't for a while.

So, I've decided that three months of the food elimination diet (instead of four) is enough (and yes, I have cheated a few times). Just this decision is already lifting my spirits!

I'm supposed to add one migraine trigger back at a time, per week, and eat that food every day that week. But since my headaches never stopped (although my migraines are less intense), I don't really know if the food has anything to do with the headaches. Instead, I'm adding back two foods at a time per week. This week it's tomatoes and onions, not because I like them the most - I don't really like them at all - but because they're the easiest. They're in so many darn things that you don't even realize!

Flickr photo by John-Morgan

The idea is, of course, that if I get a migraine, one of those foods is a trigger for me.

I'm thinking the following week will be chocolate (that will get my mood up!) but I still need to limit that one because of the caffeine content. I'm not really supposed to add caffeine back at all. Cheese might be the second trigger that week because I've really missed the "good" cheeses. And now I'm hungry...

My Weapon for Nausea

Nausea hasn't been a big problem for me lately, probably because my headaches are more daily headaches and not so much migraines (and by that I mean the intensity is not a 7 to 10 on a 10 scale and I don't have nausea and throbbing). This could be due to the Zonegran, the TMJ mouth guard which I got last week and now wear 24/7 except for eating, or my migraine trigger food elimination diet. I hope it's not the Zonegran that's helping because it's similar to Topamax, and I'm having similar side effects - loss of appetite, word loss, trouble concentrating, hair loss...but this could be because I'm on the generic.

But back to the nausea. I know that many migraine sufferers do have nausea, so I wanted to share something that worked wonders for me when I had nausea.

Drumroll, please....

Newman's Own Ginger Mints. Yes, they're organic! Meaning no artificial sweeteners, which can trigger migraines. I buy them at the health food section of my local Kroger, but I found them online here.

I'm not promising this will work for you. My nausea may not be as bad as yours. I've only thrown up once from a migraine, but I don't throw up much in general. Even with flu, I get symptoms on the other end, if you know what I mean. TMI, sorry. However, with migraines, I would get nausea in waves so bad that I'd have to stop what I was doing to concentrate on not throwing up, and when I took this it would help a lot. Hope it works for you too! :)

No, Newman's Own is not sending me free stuff, and I've never actually ordered through vitacost.com.

Healing Service

My church is having healing services every Wednesday during Lent, and I was finally able to make it this evening. We had a small, intimate group and it was very moving and powerful. I was anointed with oil and prayed over while the attendees layed hands on me, and I did the same for others who needed prayer. (No, this is not like what you see on TV with those over-the-top televangelists.) I personally believe in God's healing. And it's scripture based:

"Are any among you sick? They should call for the elders of the church and have them pray over them, anointing them with oil in the name of the Lord. The prayer of faith will save the sick, and the Lord will raise them up; and anyone who has committed sins will be forgiven. Therefore confess your sins to one another and pray for one another, so you may be healed." - James 5:14-16a

Here's our closing prayer, which was printed in the bulletin. If you choose, you're welcome to pray this as you read it:

"Almighty God, we pray that our brothers and sisters may be comforted in their suffering and made whole. When they are afraid, give them courage; when they feel weak, grant them your strength; when they are afflicted, afford them patience; when they are lost, offer them hope; when they are alone, move us to their side; in the name of Jesus Christ we pray. Amen."

Medication: How much is too much?

An anonymous person commented on my blog; here's an excerpt:

"...your reliance on meds is overwhelming to me! I know you are in alot of pain but as I read your blog, it is always a new drug for you. Just the aleve alone can do damage your stomach. Stomach issues and ulcers can cause headaches! You try all these different remedies and if they don't work your done with them, but you never stray from the drugs. I really fear for your health as you do not really know what these drugs can do to you. I know you are desparate for some relief ...I know I've been there, but please try to get away from these drugs!!! They are doing more harm than good."

I'm going to be completely honest. At first this comment infuriated me. I showed it to my husband hoping for support, and he agreed with the comment! I should have known. He's always felt that way. He rarely takes medicine, but he also rarely (if ever) has headaches. Now that I've calmed down, I have to say I agree too.

But please allow me to be human and get defensive. I try to keep this blog positive, so I don't write much about my pain and instead try to focus on treatment. But don't doubt that I'm in pain, almost every day. And my headaches don't last a few hours each day and go away. They're generally constant, all day long, getting progressively worse throughout the day. A few times a month they reach high pain levels, which is when I label them migraines. This is when I have nausea and throbbing too. Naturally, I want the pain to go away. I hate medicines and the side effects, but I think God gave doctors and scientists the abilities to develop medicines for us to use. They might not work for everyone, but it's worth a try. If I have a bad reaction to a med, I'll stop it immediately (Cymbalta for example). Otherwise, I'll try a med about three months and if it doesn't help my headaches I'll stop it and try something else, all under a neurologist's supervision. Also, I've tried/am trying many non-medication ways to fight my headaches.

I admit that I haven't had any luck from medications, other than the "rescue" meds, which are simply band-aids that don't last. But at the same time, if I were to stop trying, I would feel defeated. I'm not sure what to make of the comment because I really do agree - I hate the side effects of meds and I hate that they don't fix what they're supposed to fix, but I feel like I have no other options. I'm in too much pain to sit and do nothing.

What's your opinion on medications? How much is too much? Is there a point when one should just give up on trying meds for headaches/migraines?