I Love My Husband, But...

I love my husband, but he just asked me, "What's the difference between a headache and a migraine?"

REALLY?

We've been married ten years, and he still doesn't understand. I had a migraine today and I mentioned that it was starting to get a little better, and he said, "You still have a headache?" and I corrected him - "migraine" - and that's when he asked what the difference was.

I guess moral of the story is, nobody's going to truly understand what you're going through unless they go through it themselves. So instead of getting angry at him, I'm going to drop it. Because anger would just make my head hurt worse.

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Random update: I've been using a mouth guard at night for years, and recently I came across something saying that mouth guards could have BPA. I'm not sure if mine has it or not, but it got me thinking, why am I still wearing it every night if it hasn't helped my headaches and migraines? So I stopped using it and haven't noticed any difference other than jaw pain for one day. I might have TMJ, so if my jaw starts popping a lot I'll start using it again. For now though, it's nice to have one less thing to do each night!

No Botox (yet)

Injection image by TschiAe; modified by War on Headaches

Well, I assumed correctly. I called my insurance and they do cover Botox, only after I meet my deductible, and only 80% of the cost. I have a $1,000 deductible, so needless to say I will not be getting Botox injections anytime soon. I was really looking forward to trying it...at least as much as you can look forward to multiple shots in the head.

Now I'm only doing the following for my headaches:

• 5-HTP (no change yet)
• Mouth guard at night for TMJ (might as well not be on the list since it hasn't helped my head)
• Exercise
• Gatorade once a day - update: I'm down to the bottom of my Costco-size container of powder, so I don't think my electrolyte levels have an impact on my headaches
• Therapy about once a month 
• Drugs as needed: Aleve, Butalbital, Ketorolac
• Ice pack as needed

The list looks long, but basically I feel like I'm doing nothing, and I'm running out of ideas (that I can afford or attain legally). It's so frustrating. At the same time though, I'm still optimistic that things will get better, and I'm thankful that I've been able to drag myself to class, work and church even with the pain. Surely this headache thing will end some day, right?

GelStat Migraine

My busy semester is OVER! I'm so thankful that while taking 16 credit hours, working 10 hours a week and having chronic headaches and occasional migraines, I managed to earn a 3.8 GPA and I only missed ONE class due to a migraine! I really feel that this is God's plan for me and He's giving me the strength to do it.

Thank you, readers and friends, for being patient with my lack of blog posts. This summer I'll be working more but I only have one class, so I hope to be more active here. And my husband finally fixed my browser issues so I can now leave comments on your blogs again. :)

During the semester, my headaches have remained the same, but I haven't given up the fight. Here's what I'm trying:

• Butterbur: I tried this about 3 months and gave up because I noticed no improvements, and it was upsetting my stomach.
• TMJ mouth guard: I'm still seeing a TMJ specialist every few months, and we gradually decreased the time I'm required to wear my mouth guard. Now I only need to have it in at night (8-10 hrs). I don't think it's impacted my headaches but I do have a lot less jaw pain.
• Therapy: I'm still seeing a therapist about once every three weeks for stress, anxiety and pain management.
• GelStat Migraine: A friend of mine suggested it and I noticed they have a free trial (I just had to pay $3.99 shipping), so I figured I'd give it a whirl. The first dose I tried helped, but the second didn't, probably because I didn't catch the headache soon enough. Have any of you had success with GelStat?

Empty dose with my hand for size comparison. It actually tasted decent.







• Ice pack: My trusty ice pack has seen better days, so I got a new one. This one is from The Container Store. When I saw it online I assumed it would fit on my entire head, but when I went to buy it I realized it was more like the size of my hand. Does anyone know where you can get a head-size ice bag? 

Cute Retro Ice Bag

• Progesterone: My gyno upped my dose of progesterone (bioidentical hormone) and switched from the pill to cream, which I requested because I thought it might work better. It looks intimidating, but I don't inject it anywhere; instead, I put the specified dose on a tissue and rub it on my inner thighs (one of the many safe spots). The higher dose makes me really tired, but I only use it day 15 to the end of each cycle. It's still early to tell if it's helping.

Progesterone cream

• Drugs: The only drugs I take are Aleve for really bad headaches and Butalbital (Fioricet) for migraines. I'm trying to take as few meds as possible and prevent headaches through a healthy diet and exercise. I've always had this ambition, but now that I've gone through most of the standard migraine meds, I feel a renewed desire to get more serious about exercising. I hope it lasts!

Life Change

Photo from weheartit

As you all know, migraines change your life, both for good and bad. Mostly bad, but over the last few years I have learned to, for example, say "no", thanks to my migraines. Recently, I made a big life change which falls under the good category. 

I've worked in public relations the last four years. I have a bachelor's degree in PR and worked at a fun and energetic agency. During the last four years, however, my headaches and migraines have taken over my life to the point where I realized that my body (physical and emotional) was deteriorating, and I think a lot of it had to do with the high level of stress that goes with a PR job. I've been doing therapy for a year to help me manage this stress, but my body was not dealing with it. So, in December, I quit my job.

A change of scenery seems to be what I needed. I'm still active - in fact, I'm now a full-time graphic design student at the local community college (and I'm doing some occasional contract work for the agency). I should be able to get an associate's degree in about a year and a half. I've always been artsy, and I'm loving my classes! Two out of the five I'm taking are online, so I'm able to be at home a lot more where it's peaceful and relaxing.

Now don't get me wrong: I still have headaches and migraines. But the nearly every day of head pain has lately been every other day or so, and my anxiety and IBS have gotten better. This is a big improvement (so big, in fact, that I've been scared to blog about it because I don't want to jinx myself)! 

Also, I don't want to say definitively that quitting my job and becoming a student is the main reason for this relief because I don't know that for sure. I'm doing lots of other things that could be helping, including:

• I still have my TMJ mouth guard, and I'm slowly cutting back the hours I have to wear it. Maybe the mouth guard and/or cutting back on the hours (down to wearing it 14 hours per day now) is helping.
• I'm on my third cycle of taking Progesterone (bioidentical hormone) pills day 22 through the end of each cycle. I'm almost certain this is a big factor in my improvement.
• My diet has been really good lately. Because I'm home more, I've been eating out less and cooking mostly from scratch, and mostly organic foods (especially meat and dairy because of the whole hormone thing).
• I've been exercising more. 
• My preacher is aware of my struggle and even used me (without naming me) as an example in a sermon after I told her I'd been questioning God about the pain and at the same time wanting to turn it into a positive to help others going through it. I firmly believe that her prayers and those of church members are helping. 

Whatever is helping, I'll take it! I'm still going to seek additional treatment; in fact, now that I have different insurance (through my wonderful husband who is supportive yet a little freaked out about me not working full time haha), I may have a better chance of getting approved for things such as Botox.

I'm so happy to be writing a positive update on here! There really is hope, as I've said all along! :)

I *heart* my neuro

As I write this post, I'm drinking homemade apple carrot juice. Thanks for the suggestion, Jessica! I added a little celery, splash of OJ, and honey too. And the apples are Pink Lady apples, fresh from the mountains. YUM. While I haven't noticed a change in headaches (yet), the juice is without a doubt clearing my face.

Last week I finally got to see my neurologist, who is back from maternity leave. She spent a lot of time with me and I feel really good about things! I had been keeping a list of things to ask her, and we went through them all together. My Twitter friend Gina suggested that I write down every health issue I've ever had, even minor ones, and share it with her to see if the list would trigger ideas or show that I might have an auto immune disease. My neuro looked it over, commented that a lot of the ailments are common for people who end up having migraines (such as colic which I had as a baby), and decided to have me do an infectious disease blood test. I'm still waiting on the results. My neuro also is going to contact my insurance to see if they'll cover Botox for me, but I'd be in complete shock if they do (at least any time soon).

Speaking of tests, I finished my hormone spit test and mailed in the tubes, so now I'm in waiting mode for that one too.

In the meantime, I've started a new non-pharma treatment, Butterbur, which may prevent/reduce migraines. I got the pills from Whole Foods and they contain feverfew too.

I'm still seeing a therapist, and I still am wearing my TMJ mouth guard, but I'm slowly tapering down the hours - right now I wear it 17 hours a day. It hasn't helped my headaches, but I do have less jaw pain in the mornings, so I'm probably going to wear it every night for the rest of my life.

For emergencies, I had my neuro write me a prescription for Butalbital (Fioricet), and as long as I take it as little as possible, it helps my migraines (if I take it too much my body gets used to it and it stops working, and plus it can cause rebound headaches). I can generally handle the almost-constant headaches, but if they get really bad I'll take two Aleve pills. I'm starting to feel ulcer-type pains again, so I'm trying to take as little Aleve as possible.

I'll keep all of you up to date on the results of all the above. Thanks for all your thoughts, suggestions, comments and prayers. :)

Summer Blogcation

I

Image by Storm Crypt on Flickr

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

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

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

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

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

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

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.

My (Awesome) Visit with the TMJ Specialist

My neurologist recommended me to a TMJ specialist because I clench my jaw and grind my teeth at night. The specialist was at an oral surgery clinic that is part of a larger hospital; it wasn't at the actual hospital but it was on the campus. Check out the spectacular building!

 

I was just as impressed with the doctor as I was the building - ok, more. I started with x-rays and after just a few minutes, the doctor brought them in and she clearly explained what everything was and said that everything looked normal. Then she did a physical exam and that's when she noticed the wear on my teeth, popping, and tenderness. She said that my TMJ isn't acute but it still could be causing some - probably not all, but some - of my headaches.

Here's our battle plan:

• Take Aleve twice a day (morning & night)
• Do a moist heat massage on the jaw and temporal areas once a day
• Diet modification (GREEEAAAAAT....)
• No gum, chewy candy
• No bagels, pizza crust, tough meats (cut meats into small pieces)
• Reduce sweets
• No big bites: cut apples, sandwiches, carrots, etc. into pieces
• Mouth guard

I've done all but the last one. I'm waiting on my insurance to approve the mouth guard, and if/once approved, I'll wear it 24/7. After 60 days I can stop the Aleve, then after a while I'll be able to stop the other steps and will eventually decrease the amount of time I wear the mouth guard until I'm wearing it nights only.

I love that I don't have any new drugs to take (I was afraid I'd have to try a muscle relaxer which I tried for grinding/clenching in the past), and I'm also happy that while the doctor didn't promise complete relief from my headaches, she thinks the frequency will reduce. And she has seen plenty of headache patients, so she knows what she's talking about. I mean, just look at that gorgeous building she works in! :)

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.