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.

Sleep and Headaches

My new neurologist did a study with her patients a few years ago that related sleep and headaches.

I have fairly good sleep habits, but I'm always tired, so my neuro had me get a sleep test, which I had done at a hospital Monday night and all day Tuesday. As you can see, I was all hooked up with glue and tape, and I also had a tube put under my nose and straps around my chest and abdomen to monitor breathing. It was a neat experience. I woke up a lot throughout the night, but overall I slept ok. The nap study the next day was horrible. I was supposed to take five naps at two-hour intervals; however, they only gave me 20 minutes to fall asleep, and if I didn't sleep, they'd make me get out of bed and I'd wait two hours for the next one. I couldn't sleep for a single nap. I was there until 7 p.m. and it felt like a big waste of time. But the technician said the fact that I couldn't sleep gave them results too and I shouldn't feel bad. I won't get results until my appointment with my neuro at the end of the month.

Here are some sleep instructions that my neuro gave me. I wish I could say I've been following all of them, but it's harder than it seems. I'm going to try to do better.

- Set regular hours for sleep that do not vary significantly from weekday to weekend and allow for 8 hours of uninterrupted sleep (9-10 hrs for adolescents).

- Avoid caffeine within 8 hours of bedtime.

- Completely avoid watching TV or reading in bed.

- Do not lie down (in bed, or a couch etc.) to read or watch TV during the day.

- To reduce the need to get up to urinate at night, be sure supper is at least 4 hours before bedtime and limit liquids within 2 hours of bedtime.

- Discontinue all naps.

- If you have problems with environmental noise, use earplugs or a white-noise generator.

- Do not sleep with pets or children.

- If you have known indoor allergens, keep them out of the bedroom (such as pet dander, feathers, dust on ceiling fans, etc.).

- No snoozing on your alarm. When the alarm goes off in the morning, turn it off and get up (I have yet to succeed at this...).

If you have a sleeping partner, ask your partner if you snore, have pauses in your breathing, kick or twitch in your sleep, grind your teeth, talk in your sleep, or sleep-walk. (If you do, please report these symptoms to your doctor).

New Headache Clinic Visit Part 2

So, back to my kitchen table, full of medications. My new neurologist at the Headache Clinic gave me so many medications that I had to organize them on my table and write when I take each on sticky notes.

First of all, she had me stop taking the natural progesterone. She said that the progesterone wouldn't help my headaches and wouldn't help me get a regular menstrual cycle either. So I took that for a total of 4 nights before stopping. She also wants me to eventually stop the Butalbital (Fioricet), even though I don't take it much. That has been my "emergency" drug for the especially awful migraines.

So here's what she put me on:

* Zolpidem Tartrate (generic Ambien) - I had to try it for five nights to see if I woke up refreshed. If I did, I could cancel my sleep study. I didn't even notice any difference. Sleep study is Monday night. No more Ambien.

* Frova - this is a typical migraine med that you take as needed. I've taken it in the past and it made my migraines worse. I told my neuro this and she said to try it again. She had me take it about 1 1/2 weeks straight to knock out my headache cycle; however, my insurance only covered four pills, so I wasn't able to do that. The whole time I did take it though, I had a headache, but I was also on my first real period in two years (since I got the IUD out) so that could have been it. Anyway, no more Frova.

* Lexapro - An antidepressant. I've been on this before also (see the Lexapro tag in my blog if you want to know more), and I also told my neuro that, but she wanted to try it on me again. Interestingly enough, I just read my old blog posts and realized a side effect was crazy break-your-jaw-type yawning. So that's why I've started yawning like that again!

* Sumatriptan (generic Imitrex) - I've tried Imitrex before, same effects as Frova. My insurance also only covered four pills of this. I haven't taken it yet, but this is what I'm supposed to take when I have a migraine.

* Nuva Ring - A synthetic hormone birth control. After all my posts on natural hormones, I'm obviously not thrilled about this. However, my neuro wants me to be on this 12 weeks straight and then take a week break and use estrogen patches that week. I've tried taking The Pill with no breaks before and had a lot of spotting and still had headaches, but my neuro said the Nuva Ring will be different.

* Emergency concoction: Ketorolac (Toradol), Promethazine (Phenergan), and Seroquel - I combine these three pills if I have an unbearable migraine. My neuro said this is like going to the emergency room and getting a shot. It will knock me out, and I can't do it more than twice a month. These scare me so I haven't done this yet.

* Magnesium Potassium Aspartate - I found this at a vitamin store. I'm to take 400-500mg, but the bottle I found is 600 mg for a 2-pill dose, so I take one pill and figure 300mg is enough. I stopped it for a while because I was having stomach issues, but then I realized it was a stomach bug (I had a fever and it's going around) so I've started it again.

I don't take my neurologist's recommendations lightly. That's why I'm agreeing to take these meds. I don't want to sound like I think I'm smarter than her, because I don't. And I was happy with the appointment. However, I think after trying some of these meds before and seeing so many neuros, I'm having negative thoughts about the whole thing. I'm trying my best to push them aside, and I hope this post doesn't come across as negative.

I've had a lot of headaches lately. I have a dilemma where I try to see if it will pass, and then it gets bad and by that time it's too late to take the Imitrex; I can take Aleve but that doesn't always work either. My neuro said not to take more than 2 Imitrexs a week or more than 2 Aleves a week. So I've been suffering through a lot of headaches. But I was doing that before as well, to avoid rebound headaches.

My next post should be cool, and helpful. I'm going to write about my sleep study experience (and results if I get them that soon). Also, I'm going to post some good sleep habit tips from my neurologist. Speaking of results, tomorrow I'm going to call my old/other neuro about the blood tests I had, so if I find out anything interesting, I'll post that as well.

Have an awesome, headache-free weekend!

New Headache Clinic Visit Part 1

My kitchen table is covered with papers and pill bottles. I had my initial visit at the new Headache Clinic this past week, and my headache regimen has been completely altered.

First a little bit about the appointment. It was at a hospital and was a really big new building. I met with the neurologist and another doctor/neuro (an intern I guess), both women, for an hour and a half. There were three parts. The first part was an interview that covered everything about my medical history, emotional state and of course all aspects of my headaches. The second part was a physical exam. The only thing odd they noticed was something about my throat - they said they couldn't see it. The third part was developing a game plan to fight the headaches. Then at the very end, I went to a separate part of the hospital to get my iron level tested (and one other thing I can't remember). Because they drew blood in the same vein as last week, the vein collapsed and it left a nasty mark and I haven't been able to lift anything with my right arm.

My neurologist diagnosed me with "chronic migraine" - she said that what I'm having is migraines, but some are worse than others. She thinks I have a sleep problem, and that's why I'm getting the headaches. I don't have trouble falling asleep, and I don't usually wake up much in the middle of the night, so I had always assumed my sleep was fine. However, I'm always tired, and no matter how much sleep I get, I never wake up feeling refreshed. My dad has sleep apnea, which can be hereditary, and I apparently have a throat issue... Sleep apnea is common in overweight men, but me?? The neuro told me that it's not a well-known fact, but it's also possible for tall, thin women (like me) to have sleep apnea.

Side note, I learned that apparently it's common for kids who sleepwalk to later develop migraines - and I sleepwalked a lot as a kid.

My neurologist also thinks that, based on my answers to the emotional questions, I have low serotonin and one other thing that, of course, I can't remember. Sorry. It was information overload!

So, for the game plan, including my laundry list of new medications, check back for Part 2!

Natural Progesterone, Compounding Pharmacies

So my neurologist decided he didn't want to wait until I started a regular female cycle to get my hormones tested. I had the blood tests done last week (they took like 7 tubes of blood). My neuro also didn't want to wait to get the results before starting me on natural progesterone. He thinks my body has low levels of progesterone and that might be causing my headaches. Since you can only get progestin, the synthetic form of progesterone, at the regular pharmacy, I had to go to a compounding pharmacy where they mix the stuff for you.

I don't know if I'm sheltered or what, but I had never heard of a compounding pharmacy. So for those of you who haven't either, I picked up a brochure at the place and wanted to share some info with you. The compounding pharmacy has a nurse consultant on staff, according to the brochure. Not sure if the "pharmacists" are actual certified pharmacists or just studied chemistry or whatever in college.

Side note - according to Wikipedia, "Compounding pharmacy has been caught up in the recent controversy over hormone replacement therapy. Synthetic hormones, manufactured by large drug companies such as Wyeth Pharmaceuticals, were found to lead to increased rates of heart disease, breast cancer and stroke in the Women’s Health Initiative study, halted in 2002. As an alternative to synthetics, many physicians prescribe bioidentical hormones for patients suffering from menopausal symptoms. These hormones are mixed in a compounding pharmacy. There is no evidence that bioidentical hormones are safer than synthetic hormones for this purpose, and groups such as the North American Menopause Society have raised concerns about the marketing of these drugs."

The compounding pharmacy I went to looked really cool - seems like it'd be an awesome place to work. It was like a lab-type place with shelves like CVS would have, but instead of all drugs it had things like Sweet'N Low (certainly not healthy in my opinion) and a huge carton of EVOO (olive oil). It made me think of being a kid and mixing things for fun, like science fair or art projects. If my chemistry teacher in high school hadn't had a stroke and I was actually able to learn chemistry instead of getting an automatic A for playing spades the whole semester, I might have worked in a compounding pharmacy as a career!

Anyway, the brochure calls natural hormones "bioidentical hormones" because it refers to the structure of the hormone, not its source. You can read more about them in my book review post, a few posts down. The progesterone was $31, and supposedly if I fill out a claim form I'll get reimbursed by my medical insurance. I've taken it two nights, and so far, no side effects; but possible side effects I may have to look forward to are: breast tenderness (ok actually I do have that one), headache (this shows up on every list of side effects, doesn't it?), weight gain/loss, acne (already have this from the IUD, even though I'm now off it), loss of scalp hair, increased body/facial hair, drowsiness, dizziness, etc.

My hormone test results should come in this week, so I'll know if I need to keep taking progesterone or not.

At church this morning the preacher talked about how sometimes we make life more difficult than it should be, and we need to trust God. The sermon had an emphasis on healing and was pretty powerful for me. I'm trying to accept the fact that I don't need to "do" anything to be healed (and by "do" I mean "earn"); if it's in God's plan, fine; if not, I need to trust that he'll bring me through each and every headache.

Factor V Leiden

Oh my gosh. I have so much news, I'm going to have to break it up into two posts. Plus it's getting late and I just got a headache (me?!). :)

So I'll start with very cool news. Well, most people wouldn't think it's cool, but I do. My mom has become a Facebook fanatic and she recently found a "long lost" relative on my dad's side via Facebook. This relative told her that a condition called Factor V Leiden runs in my dad's side of the family (it's common in Italians, which they are, and I am too, partly). Basically, the condition is a genetic disorder where the blood has a tendency to clot. People who have it have a risk of stroke, which is why most people wouldn't think the news is cool. But migraines have been linked to vein blood clots and therefore this news gives me a little hope of a cure for my headaches.

Thanks to Mayo Clinic, you can read all about Factor V Leiden. It mentions a test you can get to see if you have it. I had a neurology appointment yesterday and ended up getting the blood test done that day as well, so I should have results in about a week. If I do have the condition, treatments would be Herapin and Warafin, blood thinners, but I'm not sure if I'd be able to take them unless I actually have blood clots. I'm going to wait and see what my test results say first.

Two more updates:

1) I'm finally stopping Bystolic. My neuro checked my heart rate and was shocked that it was so low, and I had a thermometer in my mouth at that time (he said it had something to do with a thyroid test and I ended up getting a blood test for that too) so I couldn't talk much, but I did manage to say "Bystolic" and he said OOOH! Since my last visit, in Dec. I think, he had forgotten I was on it. I asked if I could stop and he said yes. I was taking it for migraine prevention and I've had migraines lately, so there's no point. My heart rate was down to about 60 beats per minute, and today it's about 80 (he didn't specify to wean off it, but I'm going to just to be safe).

2) My appointment with the new neuro has been scheduled. It's NEXT WEEK! I'm nervous because my neuro just put me on progesterone (more about that in my next post), and I'm afraid the new neuro is going to change things up now that I'm finally potentially starting something that might maybe perhaps but probably not work.

Next post: natural progesterone, and my first compounding pharmacy experience!

Book Review: Natural Hormone Balance

I finally finished Natural Hormone Balance for Women by Uzzi Reiss, M.D./O.B. Gyn. It wasn't the easiest read - somewhat technical and granular. In this book, Reiss tries to convince women to take natural hormones instead of created ones - for example, take natural progesterone instead of progestin, which is in certain birth controls pills, and the IUD I just had removed. Natural hormones are exact replicas and many are made from soybeans and wild yams. Chapter 1 says, "These plants contain unique compounds that are processed chemically and made into the identical hormones you yourself produce. However, when you eat soy or yams, your body cannot utilize the compounds as hormones." You can access these hormones through prescription or over-the-counter (Appendix A gives places to buy natural hormones).

The book examines various types of natural hormones and their positive effects on the body such as feeling of youthfulness, clear mind, improved skin complexion, less anxiety, etc. Reiss says that since natural hormones can't be patented, pharma companies aren't researching them, so there aren't really many stats on their effectiveness. His "everyone's doing it wrong" approach (my words, not his) made me skeptic. But at the same time, it makes sense. Chemicalized, synthetic hormones aren't natural and your body might reject them.

Cancer is also addressed in the book, because most people including myself question the correlation of cancer and hormones. From what I gathered from the book, if you do the right combination of natural hormones, you won't increase your chances of getting cancer. It's complicated, and this post would be too long if I explained it further.

So what does this have to do with headaches? The book actually only mentions migraines and headaches a handful of times; it's more about looking and feeling younger and how to take the hormones. But if your hormones aren't balanced, bad things can happen to your body, like headaches. So it's worth getting your hormone levels checked via blood tests, which I'm going to do as soon as I can. Then, based on the results, I'll look into taking the natural hormones needed.