Cautiously optimistic about Botox

ice bagThe last time I checked in about my progress with Botox I had only experienced one migraine. As migraines go, it was pretty bad just because it lasted so long and I didn’t have access to abortive medicine. I got through Christmas with only one minor attack on Christmas Eve and anther Christmas night. Both started up just as I was getting ready for bed and were barely strong enough to treat with more than an ice pack. Given the importance of being present with my family for holiday celebrations, I went ahead and took a triptan each night just to be sure I knocked it out.

Today was a very different experience. For forty years I have relied on the quality of the pain to guide my acute treatment choices. The speed at which the pain increased, where it was located,  and what made it worse — these were signs I could rely on to help me determine what treatment choice to make. I knew when I could start with just an ice pack and some Excedrin, or when a triptan was required, or even if I was going to need more aggressive measures. In the absence of any pain, I had nothing to guide me. Just after noon the symptoms started with strong phonophobia, so I grabbed my silicone earplugs to ease the discomfort. It wasn’t long before I was turning off lights and reaching for my sunglasses. Photophobia had begun. Then out of nowhere, I felt nausea creeping in.  I rarely get nausea and almost never vomit anymore because I have learned how to stop most attacks before they get that severe. Apparently this was not one of those times. Within minutes I was vomiting, despite pre-medicating with Phenergan.  It was a migraine all right, and a nasty one at that.

Botox completely blocked all the pain.

Another change I have noticed is that my weekly cluster attacks can now be aborted consistently with my homemade nasal spray. I don’t need Tiger Balm, energy drinks, or even oxygen.  Hopefully Botox had something to do with that change, too.

It’s only been 2 weeks. That’s just enough time for any placebo effect to wear off. The next six weeks will be a true test of Botox’s initial effectiveness. Historically, the last 2 weeks of December through the first 2 weeks of February are when I am at highest risk for intractable migraine and cluster attacks. One year I had 20 days straight of attacks and 2 ER visits.  If Botox can keep me functional into the New Year, then I will truly be impressed.

I know it’s not a cure. I also discovered that it really doesn’t stop the migraine attack — just my sensation of pain. When I shared this experience with my husband this evening, he asked if I would have been able to work with this type of attack. Unfortunately, the answer is “no.” I still couldn’t think straight. Sound and light were painful. Vomiting was no fun either. And ultimately I had to take a nap to sleep it off.

The “Migraine Aware” holiday host

The “Migraine Aware” holiday host

So you’re hosting Christmas this year and the guests have already started to arrive. Among the many things still left to do, you remember that so-and-so always seems to get a migraine just as everyone else is starting to have fun. You want to be a good host, but you really have no idea how to help this person.

Many experienced migraineurs travel with their own “Migraine Kit” that contains everything they need. Even if this is the case, your guest will still appreciate your efforts and may discover something new to add to his or her own “kit”. Often, prescription medications are required to manage migraine attacks. However, by thinking ahead and having critical OTC medicines available, you let your guest know that you are “Migraine Aware” and thinking of his or her needs.

There are some thoughtful things you can do to let your guest know he or she (and the migraine) is welcome. You probably already have a few things laying around your house that will help your guest. Just gather them up and let your guest know he or she is welcome to use them during the holiday.

  • Ice bag – Anything flexible will do. I tend to prefer an older style bag that I can fill with ice and wrap a dish towel around. It stays cold and flexible the longest.
  • Sore muscle rub – Icy Hot, Ben Gay, Tiger Balm, BioFreeze…whatever you have will be appreciated.
  • Vicks – Migraineurs use this to block out smells that trigger attacks. While you are at it, inform other guests that your celebrations are “fragrance-free” so no one arrives bathed in offensive perfume that will make your migraineur sick
  • Ear plugs – Even headphones can help. These will dull the joyful noises of celebration when your guest experiences phonophobia (painful sensation to normal sound volume)
  • Rice bag – Everyone has something filled with rice, flaxseed, or corn that can be heated in the microwave. Whatever you have, share it with your migraineur guest.
  • Eye mask – A soft eye mask will block out light from windows and doors that can become painful to your guest.
  • Sunglasses – These are a thoughtful gesture. When a migraineur experiences photophobia (painful sensation to normal light), worn indoors, sunglasses ease the strain on painful eyes.
  • Massager – We’ve all been given some kind of back massager, neck massager, or something that vibrates to relax muscles. Your guest will appreciate the use of whatever you have.
  • Water bottle – Provide your guest with a water bottle that can be refilled throughout the celebration. Migraineurs need to exercise special care to stay hydrated. Your guest will need to do this in a way that does not require constant requests to you for a glass of water.
  • Peppermint tea – Ginger tea is good, too. These teas help relieve the nausea that often comes with a migraine attack.
  • Dramamine – Most migraineurs have their own medicines, but in a pinch, Dramamine will help reduce the symptoms of nausea and vomiting.
  • Aleve – This is a strong OTC NSAID which can sometimes abort a migraine attack.
  • Excedrin – Even if it doesn’t say “migraine” it may help. This combination of aspirin, acetaminophen, and caffeine had a documented history of helping milder attacks.
  • Benadryl – Doctors often recommend migraineurs add this medicine to their prescription medicines when trying to stop a migraine attack. It seems to make the other medicines work more efficiently.
  • Ginger ale – Sprite, 7-Up, Sierra Mist or any carbonated citrus drink can help ease a queasy stomach.

You may not be able to prevent your guest from experiencing an attack, but your thoughtfulness will be greatly appreciated. Show your guests that you are “Migraine Aware” by offering tools to help them cope.

p.s. These items also make great gifts for the migraineur in your life!

Experimenting with essential oils

Around the time that I wrote “Burnout” and “50% is still failing,” I started to look for ways to improve my results without taking more pills. I knew about a lot of natural supplements available but really didn’t want to swallow another pill. I just wanted to live life without worry that migraine would continue to impact every day of my life. I wanted to be carefree.

I knew that wouldn’t be totally realistic, so I started looking for pill-free holistic options that I could use myself. Acupuncture is great if you have the money to pay a qualified professional. Same goes for massage or reflexology. None met the criteria of self-use, until I remembered aromatherapy. It could be administered by a professional but could just as easily be applied by the patient. I just needed to re-acquaint myself with those oils that have therapeutic benefit for migraine. I would then practice mixing them until I found a blend that worked together.

In the past I have used unscented carrier oils by massaging them on the tender places on my face, head, and neck. I discovered that this massage oil blend was a great addition to my migraine toolkit. It is a great comfort measure — soothing and relaxing the sore muscles that tighten in response to pain. The scent is mildly invigorating, yet not overwhelming. After testing it between sessions, I have determined it will not trigger an attack by itself either.

I have also used herbal and essential oil blends as a nasal spray. The problem with previous nasal sprays was that they all contained cayenne. They were very strong and a lot of migraineurs complained that it made the problem worse. This nasal spray yielded a completely different result. I generally don’t do nasal sprays for migraine attacks because they just don’t get that bad that quickly. However, cluster headaches do come on fast and strong. About half the time, this nasal spray will abort the attack before it gets out of control. The key is to start treatment very early when the pain is still tolerable. You really only have minutes to decide.

Ingredients

Here is the breakdown of medicinal properties for each ingredient, explaining why I chose this particular blend. You may decide, after doing your own research, to change the blend to better suit your needs.

Peppermint

Peppermint has a long history of relieving headache pain. Having used it successfully in the past, I believed it to be essential to any migraine-relief formula I might create. As I did more research, I discovered more reasons to include peppermint in the blend. It calms the major gut muscles (reducing the risk of vomiting or diarrhea) and increases the flow of digestive enzymes to improve the absorption of medicine, food, and liquids. As a sudorific, it also helps regulate body temperature by increasing circulation and inducing sweating if needed. I have a hard time regulating my body temperature during an attack, so it made sense to include something that might help.

Lavender

As with Peppermint, I have already used Lavender successfully during a migraine attack. Its tonic properties have the ability to calm my over-sensitive nerves and keep me relaxed while other treatments take effect. When combined with Peppermint, it provides decent, temporary pain relief while I wait for abortive medication to take effect.

Orange

I had not used Orange in a migraine remedy before this experiment. However, I had been exposed to some blends that included it and felt strongly drawn to it. As I learned more about its properties, I understood why it has such a strong pull. It can reduce inflammation, relax mind and body, calm muscle spams, and quickly eliminates toxins from the body. One whiff of the scent and I instinctively knew it had to be included. Please be careful though as it can cause phototoxicity. Stay out of the sun or keep well-covered while using Orange oil.

Lemongrass

Lemongrass has been my long-time laundry friend. I never thought I would use it for anything other than cleaning. However, upon discovering that it also has pain-relieving and nerve-calming properties, I had to reconsider its use. I knew that it had been used to improve concentration and focus in children with ADHD and wondered if it might do the same for my “migraine brain.”  I was pleasantly surprised at how much it did help.

Eucalyptus

I was hesitant to include Eucalyptus at first because I knew it had a tendency to increase blood flow by dilating blood vessels. While vasoldilation isn’t always present in migraine, I didn’t want to take the chance of making a bad problem worse.  So I held off and kept doing my research. What I found was that it is a nice compliment to Lemongrass – stimulating my brain just enough to help me recover from cognitive slowness a little faster. Just use caution because it can cause contact dermatitis is sensitive people and is toxic when taken in large doses. This one is definitely a case where more is not better.

I finally came up with a blend that I thought might help without being too strong:

Massage Oil

20 drops lavender oil
10 drops peppermint oil
10 drops orange oil
10 drops lemongrass oil
10 drops eucalyptus oil
8 oz. carrier oil (Apricot)
Shake and mix well in an amber glass bottle

Nasal Spray

20 drops lavender oil
10 drops peppermint oil
10 drops orange oil
10 drops lemongrass oil
10 drops eucalyptus oil
4 oz. distilled water
Shake and mix well in an amber bottle with nasal spray atomizer.

Feedback wanted!

I would love to hear what kind of results other brave souls get from this blend. Please check in with your doctor before starting something new though. I used a combination of NOW and Desert Essence brands purchased from a local health food store. I already had the bottles on hand. You can obtain bottles at your local health food store or from Mountain Rose Herbs. However, they do not have the nasal spray tops. You can find those at Herbal Remedies for $2.99 each. Some people prefer to get their essential oils from doTerra or Young Living Oils and that’s fine. However, please know that oils from Aura Cacia, Desert Essence, or NOW Foods are made with the same strict quality standards and tend to be cheaper because there are fewer “middle men” to get paid with each item sold.

I haven’t eliminated any of my pills just yet. It’s too soon to tell if that will be possible. The fact that the oils work in any capacity at all make me hopeful that I have yet another handy tool in my toolkit.

Hopefully skeptical about Botox

botox_feature
Image courtesy of Ambro at FreeDigitalPhotos.net

My first round of Botox injections was four days ago. I took my friend’s advice and used ice packs to numb my forehead before the procedure. I think it helped as I really didn’t feel any pain. The whole procedure was such a non-event that I didn’t even bother to count the number of injections. The forehead injections were a little uncomfortable (probably because I could see them coming), but I barely felt the rest of the injections on my head, neck, and shoulders. It was over very quickly.

The only notable thing was the excess alcohol that got into my right eye after the third injection. I might not have even been bothered by it except that I woke up early to a cluster attack and my right eye was still sensitive to touch several hours later.

I was prepared for the possibility that all those injections might trigger an attack – which they did not.

Once the process was complete, I was completely unaware than anything had happened at all.  The next day I did develop a migraine which I attributed partly to poor sleep quality due to Baby Girl staying overnight and the anticipation of outpatient surgery the following day. Not being allowed to eat anything for breakfast before the procedure made things worse. Then the surgery was pushed back until almost 3:00 p.m. I did complain to the head surgical nurse that I was left to suffer with an attack using only one small ice pack from the time I arrived at 10:30 a.m. until they finally administered the anesthesia at 2:45 p.m.

I awoke in the recovery room migraine-free and haven’t had a problem since. It has now been four days since the first set of injections. Except for that first migraine on Thursday morning, I’ve had no signs of any migraine or cluster attacks. Maybe my body is too busy dealing with the post-operative soreness and swelling from my elbow surgery to bother with migraine right now.

The true test will come if I can stay free of migraine or cluster attacks through the New Year. If that happens, then we will know that Botox is truly working. At least for now I can say I’ve had no ill effects from the procedure. Typically my body responds to the stress of medical procedures by triggering a migraine. Also, the holidays are infamous for triggering nasty attacks. To have the complete absence of any symptoms is a welcomed change. I am just too cautious to give Botox all the credit just yet. If this continues for the next few weeks, then I will be far more convinced that Botox is responsible.

The twelve days of migraine

The twelve days of migraine

If you are living with Chronic Migraine, then you could use a little humor in your life. So sing this little song to the tune of The Twelve Days of Christmas and laugh at the many things we do to get a little relief.


On the first day of migraine, the doctor gave to me
a dose of Sumatriptan with a nap.

On the second day of migraine, the doctor gave to me
two Benadryl and
a dose of Sumatriptan with a nap.

On the third day of migraine, the doctor gave to me
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the fourth day of migraine, the doctor gave to me
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the fifth day of migraine, the doctor gave to me
Prednisone for a week,
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the sixth day of migraine, the doctor gave to me
Valium for my nerves,
Prednisone for a week,
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the seventh day of migraine, the doctor gave to me
Magnesium infusions,
Valium for my nerves,
Prednisone for a week,
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the eighth day of migraine, the doctor gave to me
DHE that made me sick,
Magnesium infusions,
Valium for my nerves,
Prednisone for a week,
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the ninth day of migraine, the doctor gave to me
Nerve blocks in my face and neck,
DHE that made me sick,

Magnesium infusions,
Valium for my nerves,
Prednisone for a week,
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the tenth day of migraine, the doctor gave to me
Lidocaine sprays up my nose,
Nerve blocks in my face and neck,
DHE that made me sick,

Magnesium infusions,
Valium for my nerves,
Prednisone for a week,
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the eleventh of migraine, the doctor gave to me
Botox shots around my head,
Lidocaine sprays up my nose,
Nerve blocks in my face and neck,
DHE that made me sick,

Magnesium infusions,
Valium for my nerves,
Prednisone for a week,
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

On the twelvth of migraine, the doctor gave to me
Neurostim to block the pain,
Botox shots around my head,
Lidocaine sprays up my nose,
Nerve blocks in my face and neck,
DHE that made me sick,

Magnesium infusions,
Valium for my nerves,
Prednisone for a week,
a shot of Toradol,
dissolving Zofran tabs,
two Benadryl and
a dose of Sumatriptan with a nap.

My headaches aren’t that bad

My headaches aren’t that bad

Think it’s normal to have weekly headaches?

THINK AGAIN

I meet a lot of people who tell me, “My headaches aren’t that bad.” Upon further investigation, I find that person’s idea of “that bad” is seriously flawed. They tend to think that if they are not as bad off as me or some of my chronic friends, then they don’t need to talk to their doctor.

Generally, by the time they meet me, they are already at or near chronic migraine and/or Medication Overuse Headache. That’s long past the time to seek help. Yet people remain complacent because of false beliefs about headaches. Here are some of the faulty beliefs I’ve encountered:

  • If I can take OTC medicine and the pain goes away, then I’m okay.
  • It’s not serious to have a headache once a week.
  • Lights and sound bother everyone when they have a headache.
  • I don’t want to be a whiner.
  • Taking prescription medicine every day will make the headaches worse.
  • It’s just a headache. The doctor won’t do anything.
  • It’s not like I have migraines or anything.
  • They’re just sinus headaches because I have allergies.
  • It’s just stress.

When to seek medical help for headaches

  • If you are taking any kind of pain medicine (even Tylenol) 3 or more times each week
  • If you are experiencing more than 2 debilitating headaches of any kind in a single month
  • If you are experiencing sensitivity to light, sound, or smell during the headache
  • If you are experiencing nausea or vomiting during the headache.
  • If you are experiencing numbness or tingling just before or during the headache
  • Any change in frequency or severity of headache warrants at least a phone call to your doctor.

When to seek emergency help for headaches

  • If you are experiencing the worst headache of your life
  • If you are experiencing a stiff neck and/or fever in addition to severe headache
  • If you are experiencing paralysis, tingling, numbness in addition to headache
  • If the headache that lasts longer than 72 consecutive hours
  • If the headache that occurs as a result of a head injury – no matter how minor
  • If you are experiencing vertigo, dizziness, altered consciousness in addition to headache

Take the MIDAS to determine your level of migraine disability

Don’t wait until your headaches are “that bad”. Get them diagnosed and treated while they still respond to treatment. Early intervention is one of the best ways to prevent transformation to chronic migraine or chronic daily headache.

Reiki is a spiritual practice

Reiki-old-style.svgI was first introduced to the ancient healing practice of Reiki by my sister-in-law. It was not long after I started getting cluster headaches, during a time when I was searching for answers and questioning just about everything. One of the first things I noticed was that some people use Reiki like a religion. Depending on the views of your Reiki Master, training may include concepts like chakras, spirit guides, angels, and more. I tend to be somewhat of an amateur anthropologist, enjoying a good search for the origins of practices and ideas. So naturally, I did the same for Reiki. What I found was that pure Reiki practice, as taught by Mikao Usui was not a religious practice at all. It was a spiritual practice of self-improvement, much like yoga, tai chi, or qi gong.

Its principles are not a secret. They are simple, timeless, and cross all religious, economic, political, social, racial, and gender barriers. I feel comfortable embracing Reiki because its principles mirror my own values and those of my family’s company, Seven Portions. There is absolutely nothing in the practice of original Reiki that contradicts my faith or personal ethics. In fact, the practice of Reiki is complementary to my professional, personal, and spiritual values.

Western culture places great emphasis on the scientific process, focusing only on what it can observe. Yet other cultures, with a much longer history, embrace both modern science and less tangible practices. They understood concepts that western science is just beginning to comprehend — namely, the human energy field. All matter emits a mild energy field and vibrates at a specific frequency. At their essence, all things are made of energy. The practice of Reiki taps into that energy field and helps to harmonize it.

The spiritual practice of Reiki is a form of healing. However, we must understand that there are many forms of healing. In western medicine, “healing” is defined as the eradication of symptoms by the destruction of invading pathogens. This is not a universal view and does nothing to heal a broken spirit. Scientifically speaking, it is not yet possible to regrow a severed limb. Once it’s gone, it’s gone. That doesn’t mean that an amputee can’t experience healing or live a vibrant, satisfying life. This is the type of healing that is best done far away from a doctor’s office.

For many years I moved away from regular Reiki practice. Due to purely random events that can only be explained as divine providence, I find myself drawn to the practice once again. It was through daily self-treatments that I learned how to ground and center myself in the middle of even the most severe migraine attacks. It is because of Reiki that I no longer panic in the middle of most attacks. It is becoming natural again as I continue daily practice, meditation, and a renewed commitment to its principles:

The secret art of inviting happiness
The miraculous medicine of all diseases:

Just for today, do not anger
Just for today, do not worry
Be grateful for everything
Do your work honestly.
Be kind to all living things.

Every morning and evening, join your hands in prayer.
Pray these words in your heart and chant them with your mouth.

50% is still failing

failingIn school, answering 50% of the questions correctly, earned you a failing grade. In fact, most of the time you needed to answer at least 70% correctly. As a perfectionist, I tried to get at least 90% correct. All those As on my report card felt satisfying. Most colleges require at least a C+ to B average just for admission.

Imagine if we judged the effectiveness of migraine treatments the same way.

Right now, responses are so poor that a treatment is considered successful if at least half the patients see a 50% improvement in the frequency and severity of their attacks. Our measuring stick for success is failure.

Individual differences affect outcomes and that’s just the way science works. It’s just too bad we can’t do better. This recovering perfectionist is getting really tired of seeing the same 50% on my migraine report card at every checkup. Over and over again, each month is the same as the last. Is a 50% reduction from baseline really all that can be expected? Am I doomed to live with 10-12 attacks per month indefinitely?

That’s not progress. It’s called “getting stuck.” It has to get better than this.

“Yes, but you were so much worse just a year ago.” my loved ones say.

That’s true. It’s been over a year since I’ve seen the inside of an emergency room or hospital. There’s been no need for prednisone either.  Yet every day, three times a day, I swallow a handful of pills in the hopes they will keep the migraines away. Every month I get the same damn results. Sometimes it seems like an exercise in futility.

  • Take the pills to prevent attacks.
  • Get an attack anyway.
  • Take the pills the stop the attack.
  • Watch the triggers because apparently the drugs won’t protect against them.

When do I finally get to stop reading labels, wearing sunglasses indoors,
and guarding all my senses against the onslaught of life?

Apparently that’s a luxury migraineurs don’t get to enjoy. No, 50% is not good enough. A real treatment will actually prevent at least 70% of the attacks AND protect against accidental trigger exposure by providing a layer of protection for my hypersensitive brain.

That’s why many of us are anxiously awaiting the arrival of CGRP-blocking antibody medications. Early studies demonstrate that these new drugs have a 65% or better success rate. At least they’re in the passing range now. What’s even better is that there are no pills to take — just an injection a few times each month. It will still be a few years before these drugs are available to patients and they will be terribly expensive.

I’m familiar with expensive treatments. Botox was $600 each time even with insurance. Zomig was almost $30 a pill and Topamax would easily run me almost $200 a month. As it is now, it costs me over $300 a month on prescriptions even with insurance and coupons. If I could replace all of that with one injection, it would happen in a heartbeat. All those drugs have caused a 40 pound weight gain that even with exercise and a clean diet won’t budge. They have also caused GERD and RLS. If a single injection could stop all of that, I would gladly take it.

The wait itself is painful. One day soon there will be an announcement that one of these new treatments finally arrives on the market. I promise to be at the head of that line. A 65% improvement means going from 2-3 attacks per week down to one a week. With even better results, I might actually get to find out what life is like without migraine.

Don’t call me fragile!

My chronic illness started at age five. As a result, my diagnosis became part of my identity.  Words like “sick one”, “weak”, “sensitive”, “can’t take the stress”, and “fragile” dot my life story. I resisted the stereotype by over-achieving. All that extra effort ultimately reinforced the unpleasant reputation by triggering a migraine anyway. I would desperately try to hide the symptoms as long as possible, quietly refusing to take medicine except when I felt reasonably safe that no one would observe. Sooner or later the symptoms became so obvious they couldn’t be ignored.

By that time I felt too terrible to think about the humiliation of being proven wrong. The shame came later when the attack subsided. I would wake up the next morning, relieved to be pain-free. Embarrassed to be found out, I secretly promised to be stronger next time. The worst thing was to be seen as fragile or weak.

At the time, I didn’t understand why I was so sensitive to other people’s perception of me. I learned that part of me actually believed I was fragile and I hated myself for it. I learned that nugget of truth many years later. During the first round of internships in graduate school, the professor supervising my work had a reputation of being exceptionally hard on grad students. Knowing his reputation, I started the semester on the defensive and things just got worse. During this semester personal circumstances added stress to an already challenging situation. In one particularly difficult supervision appointment, this professor made an off-hand comment that I was “fragile”. At first I didn’t respond. My reaction was delayed until I was safely out of his office. Once my colleagues and I were on break, I let loose with almost 40 years of pent-up anger and frustration.

It took some time to process what had happened.  In the coming weeks I was able to recognize why his comment triggered such a strong reaction. Using strategies from cognitive behavioral therapy, I carefully examined the evidence that supported his statement as well as the evidence that contradicted it. For the first time in my life, I realized that I really wasn’t all that fragile. My experiences with chronic pain had strengthened me. I may have started out weak and vulnerable, but I certainly didn’t stay that way. The process was incredibly validating.

I stopped trying to hide my symptoms and started accepting the truth of each migraine attack. At first it was shocking to my family. They didn’t understand why I suddenly started verbalizing the experience of each attack. It took some time for them to realize I wasn’t just complaining or looking for sympathy. I stopped trying to hide such an influential part of my life by taking ownership of every experience and my responses to each one.

Some weeks ago, I decided to create an image that embodied this truth. The next time someone calls you “fragile”, just remember that you really are:

fragile_lg

Finally approved for Botox

We’ve all heard about Botox.

Image courtesy of Ambro at FreeDigitalPhotos.net

It has been FDA-approved to treat Chronic Migraine for awhile now. Some people look forward to finally getting approved. Others desperately long for a miracle to help pay for such an expensive procedure.  Still others are skeptical or fearful that injecting botulism into the skin around the head, neck, and face could lead to serious problems when used long-term. Regardless of your position, you may find it helpful to follow along on my journey to determine if  Botox is an effective treatment for my chronic migraine.

My back story

Once or twice a year, I get lucky and experience only a handful of attacks for the month. For the rest of the year, I get hit two or three times each week, plus one to four cluster headache attacks every week. That all adds up to more than half my days spent  dealing with one headache disorder or the other.

My family rarely makes firm plans. We understand that migraine or cluster headache can interrupt almost any occasion. Our back-up plans have back-up plans. We never leave town without a fully stocked migraine kit, complete with a variety of hot and cold packs and at least one E tank full of oxygen. Interrupted plans are so common that writing about one lost Christmas resulted in Allergan awarding me the opportunity to “rewrite my day” with a classy Christmas dinner party in 2011.  It was a beautiful opportunity for celebration with some of my dearest friends. I joked throughout the party that it was about time something good came from all those migraines.

That opportunity opened doors allowing me to share my experiences with others. During most of the process I was receiving a limited set of diagnostic Botox injections to determine if I was a candidate for Trigger Site Release surgery. I was determined to find a treatment that would prevent me from ever having another migraine attack again. It’s been over three years since my last visit to the plastic surgeon. I was in the middle of the third day of back-to-back cluster headaches and desperate for that next round of injections.  After a long wait, the doctor finally appeared only to announce I would not be getting any more Botox.

I lost all composure. Like a burst dam, all the hysterical agitation I’d been suppressing exploded uncontrollably. The doctor quickly announced I was having a cluster headache attack and that Botox “didn’t work on clusters”. He offered me a lidocaine nerve block that ultimately made my suffering so much worse. I knew, based on the combined resources of my online headache community, that Botox did help cluster headaches. No amount of begging, pleading, or persuading was going to get me the injections I so desperately craved.

Over time I let go of the dream of a “cure”. I picked myself up and started over again, searching for truly effective, realistic treatments. Over the next 12 months, I went through two more neurologists, a physical therapist, a respiratory therapist, and 3-day hospital stay for infusion therapy before I finally found the right doctor and started making good progress. I stuck with medication trials for another 18 months before addressing the topic of Botox once again.  Two prescription and three supplement preventives still hadn’t produced good enough results to get me off the “chronic” list for both headache disorders.

Trying again

Armed with the results of my latest 90-day headache diary, I dared to ask my neurologist about Botox. Although he is not qualified to administer the treatment, he encouraged me to find a skilled doctor and even offered a few suggestions. His complete lack of ego was incredibly refreshing. He cares a lot more about his patients getting better than who gets the credit.

So now my neurologist is collaborating with another headache specialist from a competing hospital to ensure that I get the most appropriate treatments available. In November I had the privilege of meeting the man who will be administering my Botox injections. We reviewed my current treatment plan as well as my long, failed, treatment history. He agreed with me and my neurologist that Botox was the next most appropriate option to try.

In just a few weeks, I will return to his office to receive my first set of 31 separate Botox injections. I will arrived armed with an insurance prior authorization and full participation in the Allergan’s Partnership for Access program that helps defray the high cost of the procedures even for those with health insurance coverage. The timing could not be more perfect to test the effectiveness.  My worst time of the year is nearly always between Christmas and the middle of January. My longest running migraine occurred four years ago during this time.  I had an attack that lasted 22 days, non-stop, despite multiple trips to Urgent Care and the Emergency Room.  Will Botox be enough to give me a break during this high-risk time?

Stay tuned next month

I will be sharing my actual experience with Botox and give you the preliminary results. Photos and detailed descriptions to come!