Wednesday, February 20, 2019

5 Reasons To Hire a Headache Specialist

Since being diagnosed with chronic migraine over 17 years ago, I cannot tell you the countless doctors I have consulted. Multiple Primary Care Doctors and those in Internal Medicine, an Ophthalmologist, an Optometrist, several regular Neurologists, and Doctors in Functional and Holistic Medicine. The list goes on. There is a place for many of these type of doctors in your headache and migraine care, I know because I utilize several. However, if your headaches or migraines are disrupting your life and work, you have chronic migraines/headaches (15 or more headache days a month), or intractable migraines, I cannot emphasize enough how important it is to find a doctor who specializes in headache medicine. This is not just a regular Neurologist, this is a Neurologist who has had EXTRA, specialized training including certifications in headache medicine.

Headache is one of the top reasons people visit the doctor every year, which is interesting because most regular doctors only get 4-10 hours of training in headache medicine during medical school. I have seen a few of these and trust me, they were not helpful. There are also many self-proclaimed Headache Specialists who just have a special interest in the area of headaches, but have not undergone the specialized training. I have seen two of these in Indianapolis and they did very little for me. 

Here are 5 reasons you should consider hiring a Headache Specialist:

1. Headache specialists go through extra training to become certified in headache medicine. They also usually do an extra year in residency training under some of the top headache specialists in the US at a headache clinic. These people have already seen hundreds of the most chronic headache and migraine patients before finishing residency and they have learned from the best in their field.

2. Headache specialists are always on top of the latest treatments, drugs, and new research. Most of them travel to conferences and seminars on a regular basis to learn what is up and coming for migraine treatment, so they can then offer these treatments to their patients. They will also be the first to get new drugs and treatments, sometimes with free samples.

3. You can get in on a new drug trial if you want because headache specialists always have the latest information on current migraine drug trials.

4. Headache Specialists understand when you have had a debilitating migraine for 7 days and need some acute treatment. They will often try to keep you out of the ER, by pulling you into the office for infusions, trigger points, nerve blocks, etc. When I have seen Neurologists who did not specialize in headaches, I would sometimes wait DAYS for a returned call and would just end up getting sent to the ER anyway. I am so thankful for my doctor who will pull me in on a day or two notice to help me break a bad cycle.

5. Because headache specialists see people just like us everyday, you will never be treated like migraine is a psychological disease, because it isn't.  Headache Specialists are often very understanding and empathetic to the debilitating disease which migraine is. Some of them also struggle with it themselves. Headache Specialists are also very well versed in the fact that everyone responds to treatment differently, and there is not a one treatment fits all.

There are about 500 Headache Specialists in the United States currently which is definitely not a lot
when you consider that 2.5 million people in the US struggle with some type of headache disorder. Several states do not have a Headache Specialist which may mean you are committing to some extensive travel. I drive three hours to see Dr. Kevin Weber at OSU Neurology in Columbus, Ohio who trained and did his fellowship at Cleveland Clinic Headache Center. He is the best doctor I have ever had, and it is 100% worth the drive.

To find a Headache Specialist in your area, please visit the Migraine Research Foundation  or go to the links on my Resource page.

Wednesday, June 21, 2017

Help For Menstrual Migraine

If you are a woman struggling with migraines, you may have noticed they tend to get worse at a certain time of the month. Most women report onset of migraines a few days before the start of their cycle, the day of, or even a few days after a menstrual cycle has begun. Others report an increase of migraine pain at the days surrounding ovulation. If you are anything like me, I used to experience the onset of a migraine about a day before my period started. This migraine would last for nearly 2 weeks, days varying in pain level, peaking again at ovulation, and then declining for about a week until the vicious cycle started all over again.

The reason this happens to women is because our hormones rage in varying levels throughout the month. Right before the start of a new cycle, hormones estrogen and progesterone rapidly drop off. The opposite being true, right before ovulation (mid-cycle) estrogen and progesterone levels rise to their highest levels and for many this brings the onset of headaches and migraines. Many other factors come into play as well, including age. When women enter perimenopause (pre-menopause) many find they start experiencing migraines and headaches for the first time. Those who were already suffering tend to find they become worse. This is due to the decline of hormones and the unpredictability of a regular cycle as we age.

Interesting to note, many women who already suffer from migraines have reported they completely stop during pregnancy. And yet others may experience migraine for the first time during pregnancy. The same goes for menopause with seemingly no consistent pattern. For some women, migraines end with menopause, begin for the first time, or don't change at all. Sigh. It's difficult to be a woman. I don't know about you, but when I was suffering from severe hormonal migraine in my mid-thirties, the idea of plowing through and attempting to survive the next 20-25 years until menopause seemed bleak and hopeless.

WHAT CAN BE DONE ABOUT HORMONAL/MENSTRUAL MIGRAINE?

As with all aspects of migraine, there are a lot of opinions out there about how to treat hormonal migraines and headaches. I am going to present various options and then tell you what has worked best for me.

1. NSAIDS. If you do not suffer from chronic migraine, a good place to start is by treating the migraine and headaches during days you are most susceptible with a non-steroidal anti-inflammatory medication (NSAID) such as Aleve, Tylenol or Ibuprofen. Bonus: a daily IBUprofen also lightens the flow! Starting a few days before the start of your menstrual cycle, and taking every day until the period ends, could possibly even prevent a migraine or headache from ever occurring. The key is to start a few days before your period in order for this method to work.  I would only use this method if you mainly have headaches or migraines around the time of your menstrual cycle and not as many the rest of the month, because overuse of NSAIDS can cause Medication Overuse Headache.

2. Triptans There are certain drugs in the Triptan group which are longer lasting and therefore perfect to use during a specific time of the month. Ask your doctor for a dose of Naratriptan (Amerge), Zolmitriptan (Zomig), or Frovatriptan (Frova) to be taken during the days of your cycle when migraine hits the hardest. If your migraine starts on day 1, start the triptan one or two days before and you can continue taking this for up to 7 days. In many cases, this will completely eliminate the migraine from even occurring.

3. Supplements. It's no secret there are multiple types of supplements that help prevent migraine. If you struggle with hormonal migraines, supplements can possibly help those as well. High doses of Magnesium (up to 500 mg), Vitamin B2/Riboflavin (up to 400 mg), and C0Q10 have been proven effective in reducing pain level and frequency of migraines. There are also several herbs including butterbur and feverfew that have reportedly been effective for many. Supplements must be taken daily for 3 months before you will notice any difference. Also, please consult a doctor before taking any of these supplements and read ingredients in the supplements you choose to purchase, making sure it has the lowest amounts of additives and does not contain MSG or other possible triggers.

4. Diet. Isn't diet a key to pretty much every health ailment? Find foods that trigger migraine for you. Some of the most common are gluten, dairy, foods high in tyramine and histamine, MSG, soy, caffeine, and foods with preservatives. If you avoid trigger foods during the whole month, there is a theory it will also help reduce the frequency and pain level of hormonal migraines. I am on a very strict diet, but I can't say this has helped my menstrual migraines all that much.

5. Avoid trigger stacking. There are many factors that can trigger migraine: hormones, diet, weather, lack of or too much sleep, stress, emotional changes and medications---these are some of the top triggers. Ever wonder why sometimes a certain food might trigger a migraine and other times it doesn't? Experts attribute this to what has been termed, trigger stacking. It's the idea there are certain times of the month, or certain factors which make someone more susceptible to a migraine attack than others. If you add multiple triggers on on top of each other, you are pretty much guaranteed a nasty migraine. For example, if you are prone to getting migraines at the start of your menstrual cycle, aren't getting enough sleep, and then eat a food trigger like pizza, this is trigger stacking and you are setting yourself up for the inevitable. But if you avoid as many triggers as possible around the menstrual cycle, it can definitely lower the pain level and possibly help you avoid it entirely.

6. Birth control. Considering headaches are a common side effect of the birth control pill, it is not surprising the Pill often makes migraines and headaches worse for those already suffering. There is a very small percentage of people that will find improvement in their migraines from taking the Pill, because the Pill switches off the normal menstrual cycle, the natural fall in estrogen does not occur. The key here is to not use the placebo days to keep estrogen from bottoming out, and to take the Pill continuously for up to three cycles before taking a break. Some doctors may allow their patients to take the Pill continuously without ever taking placebo pills.

7. Bio-identical hormones. This is an all natural type of hormone preparation made at a compounding pharmacy which can be tailored to the specific dose your body needs. There is a theory that women with menstrual migraine are most likely "estrogen dominant" meaning the ratio of estrogen to progesterone sways one way or the other, causing imbalance of hormones. Often women will find complete elimination or major reduction in menstrual migraine by adding a dose of bioidentical progesterone. Different doses can be tried to find what works for you. Hormone balancing is not an easy task, although well worth it in the end. It is important to find a hormone doctor that understands how to use bio-identicals.

My doctors helped me find reduction in pain level and some relief in my hormonal migraines with bio-identical progesterone. I take progesterone at night in capsule form (which also helps me sleep like a baby), and drops under the tongue in the morning. I found having the same consistent dose everyday of the month, as well as twice per day rather than once, was what made a major difference for me.

Naratripan has also been a life saver for me on difficult months . When I take it for 3-5 days at the start of my cycle, it eliminates menstrual migraines completely. Take the time to find out what works for you. A hysterectomy or waiting for menopause is not the answer.

Monday, October 10, 2016

Miscarriage, Migraine, and Muslim Jesus

October is Pregnancy and Infant Loss Awareness month. We have all experienced grief and loss in our lives. I am not the first person to go through this, nor am I the first to talk about it. This is my story.

Maybe my story is your story.

It was 2008 and my husband and I were living and working in Amman, Jordan. We had been trying to get pregnant and had exasperated multiple fertility methods to no avail. Our final try was IVF and this also failed.  A failed IVF can invoke the same feelings of loss and hopelessness as a miscarriage. This loss needs to be grieved. I was sad and feeling as though children were not in our future. I was also exhausted from the hormonal roller coaster and just wanted a break.

To our surprise within 3 months of the failed IVF, we found out we were pregnant. It seemed like a miracle, our miracle. The Arab Christian doctor I was seeing at the time brought me in every week for an ultrasound.  Every time he would smile and tell me things looked “good.” We were filled with hope and excitement; we were thankful and for the first time in years, I didn’t have a headache or migraine. This would become a common occurance for me in pregnancy, and years later would prove to be useful information as we worked to make sense of my complicated health and migraines.


Sometime around week 10 of this pregnancy I started spotting. My husband called the doctor immediately and the doctor was very quick to say the pregnancy was probably lost. We were shocked. How did he know this without looking? We went for a second opinion with a lovely Muslim doctor, and after a quick ultrasound, she told us there was no longer a pregnancy.  I had what is called a blighted ovum. Something, if seen on ultrasound can be diagnosed as early as 6 weeks. So we grieved our loss and felt betrayed. 

When my hormones crashed I got a horrible migraine that lasted over 2 weeks and I wanted to die.

Only a few months later, my period was late and I didn’t have a headache again. When it still hadn’t come a week later, I was sure I was pregnant. Over the course of another week, I took three pregnancy tests, but they were all negative.  And still my period never came. It was finally my Chinese acupuncturist, who during a session, told me I was absolutely pregnant. It didn’t matter if the tests were negative, he said. I had the body of a pregnant woman and should get a scan immediately. (This Chinese doctor would later tell me I was pregnant with a girl and he was right.) 

I was too afraid to dream. Too afraid to hope.  And then an ultrasound by my new doctor, Dr. Amal, showed in fact there was a pregnancy and a blood test later confirmed it. At the first ultrasound, we quickly knew how different this pregnancy was. There was a heartbeat.

Even so, I had an unsettling feeling the entire pregnancy. I had no reason, no evidence, but something just didn't feel right. And even through the first trimester as I vomited nearly every day, I couldn’t shake the feeling there was something wrong. So when I started bleeding, I was absolutely sure this was another loss. Instead an ultrasound showed everything to be just fine. A strong heartbeat and our daughter was moving around just fine. I decided I was just paranoid from the last experience and started buying maternity clothes.

Then on a Thursday morning at the end of October, I woke up and and I knew my baby was dead. My husband thought I was over reacting because I had no basis for these feelings. I demanded to go in for another ultrasound.  

It was dusk on that Thursday and the weekend in Jordan had already begun. The muezzin was calling for the evening prayer as we pulled into Farah Hospital. Dr. Zaid Kilani, the founder of Farah and an amazing man who is known all over the Middle East as a pioneer in the science of IVF, met us in the waiting room for the ultrasound. This was the first time I had met him, but I had heard stories of women miraculously getting pregnant under his care. He was a fertility miracle worker.

Dr. Kilani's white hair gave away his age and his eyes were kind and compassionate. His voice was soft and he spoke gently as he searched for a heartbeat on the computer screen.  We all stared desperately at the screen as moments passed and I knew the heartbeat was not there. When Dr. Kilani realized it also, he sighed deeply and began apologizing profusely. Dr. Kilani took us out in his private elevator and explained he wanted me to check in and go through labor and delivery that night. He explained he would do testing to find out what happened. I went along, but the weight of heartache oppressed me. I couldn’t do this, didn’t want to do it. I didn’t want to be there, I didn’t want to be in this hospital, this country. I hated the mother/child symbol on the wall in the Farah hospital. I pleadingly looked at my husband and wanted him to make it all stop. I cursed at God and cried. I felt abandoned.

I was checked into a room on the maternity floor, close to the nursery. An IV was started and medicine to induce labor. Dr. Kilani in his kind and apologetic words told me the goal was to deliver by the following day. He assured me he would not leave the hospital. I don’t remember much about that night or the following morning. I just remember faces. Faces of dear friends that came and sat with me, sometimes apologetically, sometimes saying nothing. There were friends that stayed the entire time I was in labor and pain. Friends that just sat in the mud puddle with me.

No one at that hospital would give me any form of pain medicine and I couldn’t figure out why, although I suspect they were scared of my complicated medical history. Eventually when it was over, I cried. I cried in relief. I remember someone asking if I wanted pictures and I definitely did not at the time. It wasn't something they did in Jordanian culture and I didn't want it.

Dr. Kilani with his kind voice and eyes showed her to me and pointed out what he could see wrong. The intestines were outside of her belly.  He still needed to do testing and without saying the words exactly, he very kindly inferred it was better this happen rather than to carry all the way to full term. And then he reassuringly told me in his entire career, he could count on two hands how many times he had seen a situation like this. It was one in a million and unlikely to happen again. His words were prophetic and he reminded me of Jesus. Dr. Kilani was my Muslim Jesus. And because he knew we had already been through so much, he allowed my husband to stay with me and hold my hand while they put me to sleep and did a D&C.

I was alone in my room as my husband walked with friends who were leaving. I was crying and hopeless, wondering how we would ever recover. And very quietly Jesus visited me and said, Not this time N, but next time. I sighed. And then Muslim Jesus entered my room and boldly told me this wasn’t the end of my story. I would get pregnant again. I would have a baby, and he wanted to be the doctor to deliver it. He patted my leg and told me I was free to go home and rest.

In the weeks that followed, I spent as much time as possible in our apartment, sometimes with all of the shades down and curtains closed. I didn’t want to be alone and I didn’t want to be around anyone. I hated God and I hated everyone else.  After two weeks, Dr. Amal called to let us know the baby had Trisomy 18 and would not have lived much after birth. I was in hormone hell and got a horrible migraine that lasted for what felt like a month. It was a daily reminder to me of death and I couldn't find God in any of this.

Sometimes I would awaken in the dark hours of night and scream out, remember and start sobbing again in the darkness. My husband would hug me, speechless and hurting himself. Grief is always the darkest in the night and it was in those moments I contemplated taking my own life and pleaded for God to just take me. But morning always came. Numb, we muddled through our lives the following months. My doctor suggested we start trying again after 2 cycles, but I just couldn’t. I felt choked by fear and I didn’t want another baby, I just wanted the one I had lost.

People said a lot of dumb things to me during this time, and a lot of ridiculous religious clich├ęs. I have always been fairly real, real with people and real with God. I think God appreciates realness, so I told him daily exactly what I thought of my situation.

It is in our deepest pain, both physically and emotionally we come to see the face of God.

By other people I often felt judged by how I was responding to my situation, or choosing not to respond. I was judged by the things I said out loud; by what books I was reading or not reading. I was judged by everything I did or didn’t do. If I had been a Muslim, I would have been expected to say, “It was God’s will,” and not cried or questioned, lest God bring something even darker upon my life. Seemingly the same, as a Christian, I learned I was expected (by other Christians) to respond nearly the same. Could God not handle my words or thoughts? He could. When something horrific happens, often well-meaning people show up and start talking. They speak as God’s advocate, thinking they need to defend Him, as if He can't defend Himself. Knowing when to just sit silently next to a person in the mud puddle, in the mud puddles of life, is a skill few people have. The friends who did, who sat quietly in the mud puddle with me, are a treasure and I will never forget them. 

My husband planned a nearly three week trip to Turkey in January of 2009 and I felt like I could breathe again. It didn’t fix anything, it didn't heal me, but it helped me process. And when we returned to Jordan, I decided I would try again with fertility treatments. Only a few short months later we were pregnant with twins and they were born the following October, almost exactly one year later. Two beautiful miraculous gifts that were not given to replace the ones we had lost, but were just simply given and entrusted to us. And then a few years later a third little miracle, a baby girl, joined our family and we finally felt complete.

My story has a happy ending and I realize it doesn’t always happen this way for everyone. But I do know there is always hope. In every horrific situation we will eventually find hope, because the worst is never truly the end. 

Saturday, October 1, 2016

MSG and Headaches


 In the small town in Ohio where I grew up, we can boast of many things when it comes to food. The best ice cream, the best chocolate, the best hamburgers, and in my opinion THE BEST Chinese Food. I grew up eating at Ming's Great Wall, weekly. Ming the owner, is from China and he makes the best Almond Chicken, Sweet and Sour Chicken and Chicken Fried Rice. My husband and I have made a point to eat Chinese food all over the world and we still believe Ming's is the best. Now when I look back and think of how much MSG (Monosodium Glutamate) I consumed over the years, well it almost gives me a headache.

Fourteen years ago when my migraines turned chronic, someone mentioned I should give up MSG, but I was given very little direction on how to do it. And it's no wonder, MSG is nearly everywhere and seemingly in almost everything, often hidden under other names. And giving up food, especially your favorite food, is really hard. What pushed me to finally start a diet elimination was multiple chronic health issues and modern medicine offering me very little to improve my situation.  I am a firm believer, there is almost always a diet component in chronic migraine.

Over the years, I believe I just always had a constant headache. Some days more intense than others and some days tolerable. When you live in this state it is nearly impossible to know if food is triggering headaches. I was completely unaware and honestly didn't give it all that much thought. I unknowingly consumed MSG everyday, and it wasn't until about a year ago after I had completely eliminated, I was able to decipher MSG as a major trigger for me.

WHAT IS MSG?

MSG, which stands for Monosodium Glutamate is a food additive and a flavor enhancer that has been added to our food for over a century. It is the salt form of glutamic acid, which is a naturally occurring amino acid. The food industry injects MSG into our food because it intensifies taste, giving food a more salty and savory flavor. This excites your taste buds and stimulates the release of brain chemicals called neurotransmitters. Ever started eating Doritos and before you know it, have consumed half the bag? It's likely the added MSG, which will almost always leave you craving more. MSG can be found in everything from Chinese food to canned vegetables, soups, and processed meats, broth, stock, bouillon, seasonings, chips, and salad dressing. Sometimes it is hidden in the most unexpected places. We would not have processed foods without MSG.

MSG comes in different forms and names, so an ingredient label will not always specify monosodium glutamate. You can find other forms of MSG on labels under these names:
  • Hydrolyzed Protein (including vegetable/soy/plant/rice protein)
  • Yeast extract and autolyzed yeast
  • Natural flavors/flavorings
  • Soy Protein
  • Textured Protein
  • Whey Protein
  • Protein-fortified items
  • Malt extract
  • Malted barley
  • Maltodextrin
  • Carrageenan
  • Kombu (Seaweed Extract)
  • Sodium or Calcium Caseinate
  • Glutamic Acid
  • Gelatin
  • Fermented or cultured Items
  • Ultra-pasteurized items
  • Enzyme-modified items
  • Glutamate
  • Monopotassium Glutamate
  • Calcium Glutamate
  • Monoammonium Glutamate
  • Magnesium Glutamate
  • Natrium Glutamate

MSG can also be found in Skim milk and often added to diet food. But ironically it has also been linked to weight gain and overeating, mainly because glutamate stimulates senses in the brain. This ends up making you want to eat more (3).

MSG AS IT RELATES TO HEADACHES AND MIGRAINES

Over the years, people have reported to the FDA unusual symptoms after consuming large quantities of MSG. These symptoms include:
  • Chest pressure
  • Tightening and pressure in the face
  • Burning sensation
  • Facial flushing
  • Dizziness
  • Headache pain across the front and on the sides
  • Abdominal discomfort (2).

The FDA has classified MSG as a food ingredient that is “generally recognized as safe.” (4).  My faith in the FDA and what they choose to approve or not, has waned over the years. Because of the endless reports the FDA has received over the years about these adverse reactions, food companies are required to include the forms of MSG in their nutrition labels. But the use of MSG still remains highly controversial among experts. While a few studies have attempted to prove the correlation between MSG and headaches/migraines, there has been no definitive evidence to support claims.  It is extremely difficult to have success on these types of studies with migraine patients, mainly because there are so many other variables, triggers, and factors at play when it comes to headaches. A known headache trigger might not necessarily trigger a migraine every time (1). Like other headache triggers, MSG attacks by dilating blood vessels and exciting nerves in the brain. This can trigger electrical dysfunction in the brain which begins the migraine process (3). All of the major headache specialists and clinics in the US including Mayo, Cleveland Clinic and Diamond Headache Clinic, mark MSG as a major migraine and headache trigger and suggest avoiding it.

I never believed MSG was a problem for me, until I eliminated it for several months. With MSG, I will get a bad headache within a few hours of consumption. Although for other people a headache from MSG may not always develop the same day.  Sometimes they can develop 24-48 hours later (1). When I do get a migraine from MSG, it is usually because there are other factors at play. Migraineurs tend to have a certain threshold with several layers of triggers. Often if there are several factoring triggers at play, the chances of a full blown migraine are high. For example, I struggle with hormonal migraines, so if I eat MSG during a time my hormones are fluctuating, you can bet I will get a full blown migraine. If I add lack of sleep on top of these two triggers, well then, it's going to be a doozy! This is often the case for anyone with migraines, several triggers at the same time, will likely produce a migraine. If you have never eliminated MSG, it is another good place to start.


 




1. Buchholz, David. (2002) Heal Your Headache. New York: Workman Publishing Company.
2. Foods That Cause Headaches and Migraines. (n.d.) Retrieved September 2016 from Cleveland Clinic Online: www.clevelandclinic.org
3. Xiong, J. (2009, November 15). Deciphering the MSG Controversy. Retrieved September 2016, from National Institutes of Health: www.nih.gov
4. Zeratsky, K. (n.d.) What Is MSG? Is It Bad For You? Retrieved September 2016, from Mayo Clinic Online: www.mayoclinic.org


Tuesday, August 23, 2016

Botox For Chronic Migraine: What The Doctor Failed To Mention

Botox for Chronic Migraine? It sounded like a dream come true. Treat my migraines and also be rid of forehead wrinkles? Yes please!

I had always gone to Cleveland Clinic for my complicated medical care since I was first diagnosed with chronic migraine in 2002. But in 2014, I was living 5 hours away from Cleveland and tired of the drive.  My migraines had increased again, and I was beginning to feel like I needed a fresh opinion. A new "headache clinic" had recently opened in Indianapolis and I was interested in seeing if this doctor could offer me some type of new innovative migraine treatment.

I wish someone had staged an intervention right then. You don't go from seeing world renowned doctors, to a self proclaimed headache specialist. It would be like shopping at Neiman Marcus your entire life and then suddenly deciding to only shop at JCPenney.

This Headache Clinic really only consisted of one doctor and his office staff as he had no nurses and no other partners. On my first visit this doctor read my medical history very quickly asked if I had heard of Botox for Chronic Migraine, because apparently I was a perfect candidate for it. At the time I was an exhausted stay at home mom with three children ages 4 and under. My screen time consisted of Disney, PBS Kids, and nightly binges on Netflix. So no, I had not heard of Botox for Chronic Migraine or seen the commercials. Dr. Botox, as my husband and I unaffectionately nicknamed him, convinced me it was the only way to go because I had already tried everything, And he was mostly right. Botox is often a last resort for migraineurs. To get approval, the paperwork is extensive and a patient has to prove they have tried prophylactic medicines from several different categories and different alternative therapies. The doctor's office set out to get pre-approval from my insurance company and I waited patiently.  I didn't bother to do any of my own research and just decided Botox was my answer.

HOW DOES BOTOX WORK FOR MIGRAINE?

Botox is a type of Botulinum toxin, also known as OnabotulinumtoxinA. It is a neurotoxic protein produced by bacteria and it is the same toxin that causes a life-threatening type of food poisoning called botulism. Botox has been used to treat medical conditions since the 1970s, and is being used to treat at least 20 different conditions today.  Like several other migraine treatments, Botox for Chronic Migraine was discovered when patients getting botox injections for other reasons, reported a reduction in the frequency of migraines.  After several clinical trials, Botox was approved for use in migraine in 2010 by the FDA when Allergen, the makers of Botox, presented evidence from two studies showing improvement in migraine patients. (1)

It is not entirely understood how botox works in the prevention of migraines. We do know the neurotoxin in botox when injected, is poisonous and destructive to nerve tissue. Botox weakens nerves and muscles and also blocks certain chemical signals. (2) Many of these nerves and muscles the Botox weakens are also involved in migraine pain. It makes sense Botox has the potential to help those with chronic migraine because it deadens the nerves that would otherwise be sensitive to pain.

Botox therapy is recommended only for adults with chronic migraine who have 15 or more headache days a month. It is not approved for those who have 14 or fewer headaches a month.  Allergen claims the treatment can help to prevent headaches and migraines before they start and will prevent an average of 8-9 headache/migraine days a month. (3)

Efficacy of Botox varies widely. Injections need to be done once every three months and some people see a 50% reduction of their migraines after 2-3 rounds. Others think it made their migraines and headaches worse.  I think the initial grandeur of Botox for Chronic Migraine is diminishing now that it has been around a few years and patients haven’t found their miracle cure. A doctor at Diamond Headache Clinic told me she was becoming “less enchanted with Botox” because they were not having the high success rate they had hoped for.

POTENTIAL SIDE EFFECTS

One of the dangers of Botox is the spread of toxins which can take place days or even weeks after injections. The following is information taken from the Botox website on these possible side effects:

                    BOTOX® may cause serious side effects that can be life threatening. Get medical                         help right away if you have any of these problems any time (hours to weeks) after                       injection of BOTOX®:
  • Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months.
  • Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice, trouble saying words clearly, loss of bladder control, trouble breathing, trouble swallowing.
  • Serious and/or immediate allergic reactions have been reported. They include itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint.
  •  BOTOX® may cause loss of strength or general muscle weakness, vision problems, or dizziness within hours to weeks of taking BOTOX.
And after this long list of possible symptoms, the Botox website goes on to state:

  •  There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX® has been used at the recommended dose to treat chronic migraine.
I wonder what Allergen and the FDA deem “serious?” Death?  

BOTOX HELL

July 3rd of 2014, day of my injections, I sat across from Dr. Botox and asked him to go over all potential side effects associated with treatment. I am very sensitive and often react unfavorably to medicine, I told him. Dr. Botox smiled and told me the worst side effect would be a droopy eyelid, but it was unlikely to happen as long as I didn't touch my forehead for a few hours. I smiled back and told him if he had any left over to feel free to inject around my laugh lines. Then I was asked to sign a waiver stating I wouldn’t hold him responsible for death or any other possible act of God. I was told it was standard procedure and I naively signed it.

The injections that went into my forehead, head, and neck took around 15 minutes and felt similar to 31 bee stings. It wasn't horrendously painful, but I do remember wondering why anyone would choose to put themselves through this for cosmetic reasons. (I was only 35 then, now I get it.)

In the days following my botox injections, my neck became so stiff it hurt to move, but I powered through and it eventually went away. It wasn’t until nearly a week out, the mind-numbing fatigue came over me. I couldn’t keep my eyes open and even after resting, I would wake up feeling the same severe fatigue. Having struggled through Hashimotos/Hypothyroidism most of my life, I was used to dealing with fatigue, but this kind was different. Then, a few days later strange symptoms surfaced and I honestly thought I was going into psychosis. My eyes completely dried out and I was unable to wear contacts.  I also started having problems with my vision. Then another day I woke up to dizziness and nausea, followed by muscle aches and all over body weakness. I felt like I had the flu. And the final symptom to come was numbness and tingling in my hands and down my right leg. I had no idea what was wrong and refused to believe this could have anything to do with the botox. I visited urgent care where they tested me for mononucleosis, but it was negative and the doctor suggested I call my neurologist.

On Monday morning I called the office, spoke to the receptionist, and asked if any of this could be Botox related. Dr. Botox responded quickly saying, "there was NO WAY" this could be caused by Botox and I needed to consult my PCP (Primary Care Physician). My PCP saw me immediately and after running a few tests, told me he was pretty sure it was a bad reaction to the Botox as he had seen this one other time in his career. He pulled up the Mayo Clinic website on his computer and began reading to me the list of potential side effects associated with Botox for Chronic Migraine. I was shocked and angry. He assured me I was not going crazy, this was very real, and again he had seen one other lady react to botox this way. Even though my doctor was convinced of this, he still ran a litany of blood work, testing me for autoimmune diseases that lined up with my symptoms. I tested negative for all of them.  My PCP assured me, as bad as this was, it would clear up in around 3 months when the botox was out of my system. Three months? I was a stay at home mom to three little kids, 4 year old twins and a two year old!

The weeks that followed were my personal hell. I couldn’t keep my eyes open. My muscles felt so weak I had difficulty climbing the stairs and raising my hands to wash my hair in the shower. My oldest daughter found me one morning passed out in the hallway after I had attempted to get to the bathroom on my own, but was too dizzy. I had so much nausea, I couldn’t eat. At night I would hug my kids tightly because I wasn't entirely convinced I would wake up the next morning. Instead, I did wake up every morning and the cycle of torture would begin all over again.

My husband lost countless days of work to take care of me and the kids. Some family and friends rearranged their lives to come and help us. But the most difficult thing for me, was seeing the fear instilled on the faces of my sweet children as they watched their mother who used to plan fun activities during summer days, deteriorate and become unable to perform small daily tasks. During that time, I made three phone calls to Dr. Botox, demanding he return my calls, but he never did. I spent countless hours on the phone with the FDA, reporting and answering their questions, but they could only resonate what I already knew; it would get better after 3 months.

I consulted with other doctors and most had never heard of such a thing. It was implied by one doctor that potentially I had seen a list of botox side effects and imagined I had them. They were just a figment of my imagination. Feeling alone and half crazy, I did the thing all doctors hate for their patients to do and began searching online for information, desperately trying to find evidence of this happening to other people. And I did. It was difficult as I had to dig deep. I found a few stories, mostly in relation to reactions of cosmetic botox. But then I stumbled upon a small community of people who were treated with botox for different medical reasons and also had a bad reaction. I was finally convinced I wasn't crazy. After reading story after story of people who had similar symptoms as me, some worse and some just different, I found out most of us shared at least one other thing in common: the doctor who performed the botox injections didn't believe Botox could do this to a person.

My symptoms began to slowly improve sometime after 6 weeks and I regained my ability to easily climb stairs and perform daily tasks. After eight weeks I saw a lot of improvement. Later, I found out I shared something else in common with the people in this community. Even at nearly 7 months out, I still had some of the residual side effects, like dry eyes, slight muscle weakness, and those strange tingling sensations. I just didn't feel the same.

I saw a doctor at Diamond Headache Clinic in early 2015 and she believed my story. Diamond does hundreds of botox injections each week, and this doctor said she had seen what happened with me maybe less than ten times. But she had seen it. I wasn't crazy and I wish doctors didn’t have so much faith in the drugs they prescribe. And I wish when doctors are unable to find a logical medical reason to explain patients symptoms, they didn't just push it off as anxiety and stress or hypochondria. I wish I could have back all the time I lost to botox, and I wish I could erase the memory of the look on my small children's faces. 

I finally had a phone conversation with Dr. Botox four months after my injections.  It only took place because of some "promises" my husband made to his office staff if I did not hear from him. That conversation was....interesting. I got a lot of excuses from him about how he handled my situation, a lot of blame was cast on his office staff, and I didn't get a real apology. He claimed in the 12 years he had been doing Botox, he had never seen such a reaction. The more likely story would be he probably just didn't listen. Ironically, Dr. Botox closed down his practice last summer and joined the largest Neurology group in Indianapolis. Most doctors in Indianapolis, no matter what network they are in, refer their patients to this group. I truly hope Dr. Botox learned from my case and became more open to the possibility that, when you inject toxins into someone’s head, it is possible for bad side effects to occur.

As for me, I went running back to Cleveland Clinic and found a new headache specialist who has proved to be helpful and caring.  I learned a lot about my own body through this botox experience, and I like to think it was the start of motivating me to take control of my own health. I began a journey of seeking out alternative therapies for the treatment of my migraines and other chronic health conditions and eventually stumbled upon the right group of people to help me.


        1.       Walsh, S. "FDA approves Botox to treat chronic migraine". FDA Press Releases. Retrieved August 20, 2016.
2.       Botulinum toxin A inhibits acetylcholine release from cultured neurons in vitro, Ray P, PubMed, In Vitro Cell     Dev Biol Anim. 1993    Jun;29A(6):456-60.
3.       www.botoxchronicmigraine.com Retrieved August 20, 2016.

Sunday, August 7, 2016

That Darn MTHFR Gene and How It Affects Migraine

Having dealt with chronic migraine the past 14 years, I thought I had literally tried everything there was to treat migraine, unsuccessfully. After struggling with a disease for so many years, it is natural to think we have tried everything. I had failed so many migraine treatments, including botox, I felt like I was completely out of options. Then in 2015 I had some genetic and food sensitivity testing done. 

I have been told over the years my migraines were hereditary and there was just nothing I could do about it. Bad genes, they always said. I do have some bad genes. I inherited some really crappy genes, combined together, making for the perfect storm of poor health. I had heard of the MTHFR gene and started doing some of my own research. I was shocked at how many diseases have been linked to the MTHFR gene. When I got my genetic tests back, I wasn't terribly surprised to learn I had one copy of the MTHFR A1298C and one copy of the MTHFR C677T.

I am not all that special, as this genetic mutation is quite common. Studies have shown, 1 in 2 people, roughly 50% of the population, is a carrier for the MTHFR genetic mutation. Migraine is only a drop in the bucket of conditions the MTHFR gene affects. MTHFR has been linked to so many different health problems and diseases, it is surprising modern medicine isn't testing everyone for this gene. Fortunately, many people who have the gene may never have symptoms of these diseases. But then there are those like me who have several conditions related to MTHFR. Some of these chronic illnesses and diseases include:
  • Autism
  • Fibromyalgia
  • Chronic Fatigue Syndrome
  • Irritable Bowel Syndrome
  • Coronary Artery Disease
  • Parkinson's
  • Miscarriage
  • Schizophrenia
  • Depression
  • Anxiety
  • Addictions
  • Stroke
  • Bipolar Disorder
  • Blood clots
  • Crohn's 
  • Epilepsy
  • Type 1 Diabetes
  • Migraine with aura
  • Alzheimer's
  • Certain Cancers 
  • Rheumatoid Arthritis
And this is in no way a comprehensive list. Dr. Ben Lynch, author of the website mthfr.net, has even gone so far as to claim, "MTHFR is related, directly or indirectly, to basically all human symptoms, conditions, syndromes, diseases and signs."  

What is the MTHFR Gene Mutation?

Never heard of it before? Let me try to explain in simple terms. MTHFR is the abbreviation for a gene called, methylenetetrahydrofolate reductase. MTHFR tells the body to produce an enzyme involved in converting specific B-Vitamins, namely methylfolate, into a form the body can use. Our bodies then take this converted form and turn it into specific proteins and vital compounds. Some of these include the neurotransmitters serotonin, norepinephrine, and dopamine. (2) Having the MTHFR gene with mutations such as C677T and/or A1298C, leads to a reduction in the function of this enzyme, and makes it difficult for the body to convert methylfolate into a form we can use,
specifically folic acid. Folic acid is often added generically to foods (take a look at your kid's cereal box) and is found generically in prenatal vitamins and other supplements. This is not necessarily a problem for people who do not have the MTHFR gene mutation. BUT, if you are a carrier of this gene and have two copies of C677T, or one copy of C677T and a copy of A1298C, you are at a greater risk of developing the diseases and conditions associated with this gene because your body is unable to process folate in the way it is supposed to.(1) I like how Dr. Ben Lynch broke it down on his website. MTHFR function is reduced typically in this way:

  • MTHFR A1298C heterozygous (1 copy): 20% reduction in function
  • MTHFR A1298C homozygous (2 copies): 40% reduction in function
  • MTHFR C677T heterozygous (1 copy): 30-40% reduction in function
  • MTHFR C677T homozygous (2 copies) 60-80% reduction in function
  • MTHFR A1298C heterozygous and C677T heterozygous (one copy of each): 70% reduction in function. (3)
MTHFR and How It Relates to Migraine
I would love to expound on how MTHFR correlates to Hypothyroidism and the slew of other health conditions,because it is fascinating. But, for the purpose of this blog I am going to hone in on migraine. I love how the human body is complex and intricate, all parts working together to make sure things run smoothly. It is simply amazing to me how one seemingly small thing, can throw our bodies completely off.

In relation to migraine, MTHFR can lead to elevated homocysteine levels, which causes a problem for nerves and blood vessels, contributing to migraines. It can also produce "neurotoxic effects" and "hyperexcitability" in the brain. Studies have found reducing homocysteine levels through the proper supplementation of B-vitamins has helped to reduce migraine. Interestingly, another study found the different mutations on the MTHFR gene correlated to different associated symptoms of migraine. For example, C677T has been associated with physical activity and stress as a major migraine trigger, while the A1298C was found associated in those who suffered from migraine with aura. (1)

So what can we do? First if you do suffer from migraines, it is definitely worth getting tested for the MTHFR gene. I had lots of DNA testing done and it was a simple cheek swab for me.  MTHFR can also be tested for with a simple blood test. Oddly, I found out recently when I was reviewing some old medical records, I was tested for the MTHFR C677T gene back in 2008 when I was living in Amman, Jordan, after suffering two miscarriages. My doctor gave me the results, gave me a prescription for what I assume was a type of folic acid, but never told me anything else about it. Stateside, I have had two different OB's whom I showed this testing to and neither of them knew what to do with it. This is often the case as many doctors are uncomfortable with genetics and don't know how to treat MTHFR, or don't find it necessary. It's like my pediatrician said when I questioned her about having my kids tested for some of these genes, she was more than willing to run the tests, but needed to know what to do with the results. There are many doctors in the states, both conventional and functional, that have a good understanding of the MTHFR gene and know what to do with it.

Individuals who carry these genes need to be taking daily supplementation of methylated forms of Folate (5-MTHF) and Vitamin B-12 (methylcobalamin).  I take the special forms of these vitamins through Douglas Labs. Many over the counter supplements contain a synthetic form of folic acid, which will actually make things worse as the body cannot process it. Therefore, it is necessary to find the methylated forms with a reputable company. In the case of migraine, it is possible these two forms of methylated supplementation could work together to raise serotonin levels and potentially improve migraine.  And remember, synthetic forms of folic acid is often added to our food, so read labels and avoid. As always, it is better to eat fresh foods that naturally contain folates such as leafy greens.

I have only been on my nutraceuticals for a few months and I have made a lot of changes in my diet and life. Even in this short time, I have seen major progress in not only reduction of my migraine, but also improvement in my IBS, fatigue and Hashimoto's.

  


1. "Effects of MTHFR Gene Polymorphism on the Clinical and Electrophysiological Characteristics of Migraine," BMC Neurology 2013. Online. http://bmcneurol.biomedcentral.com/
2.  "Studies on the Pathophysiological and Genetic Basis of Migraine," U.S. National Library of Medicine National Institutes of Health. Current Genomics, published online 2013.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3763681/
3. Lynch, Dr. Ben, "Is MTHFR Related to X Condition? X Disease? X Symptom? X Syndrome?" Online. mthfr.net June 10, 2015

Thursday, July 21, 2016

That Star Wars Looking Device: A Review of Cefaly For Migraine


WHAT IS CEFALY?

Cefaly is a TENS unit head piece that attaches to the forehead via an adhesive electrode, and is becoming a first line treatment for many migraine and headache sufferers.  Cefaly sends electrical impulses through the brain and is specifically designed for migraine/headache sufferers as an alternative or compliment to medication. Cefaly was available in European countries for years before it was finally approved by the FDA in March of 2014. Back in 2014, it was very difficult to find solid information and reviews on Cefaly because there was only a small population using it. However, it quickly gained popularity here in the states and now there are a host of reviews from users and medical journals online.

Modern medication used to treat migraines generally comes with too many undesirable side effects, making migraines even more difficult to treat. Cefaly is an alternative to these medications because the makers boast of very few side effects which are all reversible. According to the Cefaly website, side effects could include: intolerance to the sensation on the forehead (1.25%), feelings of fatigue during and after the session (.64%), headache after one session (.52%), and irritation of the skin on the forehead (.42%).


HOW DOES IT WORK?

 Most headaches and migraines involve the trigeminal nerve, a cranial nerve located in the center of the brain, with nerves extending to the forehead, the facial region, reaching to the sides above the ears, as well as behind the eyes.  Cefaly targets the trigeminal nerve with neurostimulation, producing a "relaxing effect" to these nerves and therefore decreasing migraines. The makers of Cefaly claim regular use of the device will eventually reduce the number of migraine and headache attacks, mainly due to precise stimulation of the trigeminal nerve. In order to get the full benefits, patients need to use the device at least once a day, for a full session each lasting 20 minutes.  I heard the CEO of Cefaly, Pier Rigaux, speak at the Migraine World Summit this year and he recommended using it twice a day in order for it to be most effective.

Those who would most benefit from Cefaly have one or more of the following conditions:

Common migraine

Migraine with aura

Ophthalmic migraine

Episodic migraine

Chronic migraine

Menstrual migraine

Anterior tension type headache

Posterior tension type headache

Chronic headache

Occipital neuralgia


DID IT WORK?

I first heard about Cefaly from my friend Eric in 2014 when he posted an article on his Facebook page for his wife who had recently been struggling with migraines, and was then later diagnosed with fibromyalgia.  As a chronic migraine sufferer at the time, I was absolutely fascinated by the possibility of a TENS type unit that could be used for migraine, in place of medication.  I immediately began doing my research and trying to figure out if it was right for me. The Cefaly website claimed an astounding 71% patient satisfaction rate and a 75% reduction in headache medicine use. Because there is a 60 day money back guarantee, they base their satisfaction rate on the amount of patients that do not return the device. In 2014 I could only find a few reviews of people actually using Cefaly, and very little in medical journals, but today you can find a plethora of information online. You can also find testimonials of people using Cefaly on their website here, and studies since 2014 are showing around a 50-60% satisfaction rate among patients who use the device regularly for 60 days.

In 2014, I convinced my doctor to write me a prescription for Cefaly and I was so excited to try it. The Cefaly comes with 3 electrodes that last anywhere from 15-30 uses.  Before placing the electrode on the forehead slightly above the eyebrows, it is important to wash the forehead with rubbing alcohol. This makes the electrodes last longer. The device itself rests on the electrode and once you push the start button, immediately you can sense the electrical impulses on the top of your head. The intensity rises and peaks in intensity at 12 minutes. It took me a long time to be able to build up to full strength as it was a bit painful in the beginning, although nothing compared to the pain of a migraine or headache. Even though the Cefaly instruction manual says you can move about as normal, I found I was only comfortable when lying down. This lasted for about two months, but I am now able to fold laundry and pick up toys while doing a session at full intensity.  I can honestly say I am not sure it has done a lot for me in the treatment of migraines and headaches, as I saw very little change after using the device for three months. I am a firm believer that migraine treatment is a 360 approach and there is not a one cure-all, but instead the implementation of diet and lifestyle changes, holistic approaches, as well as medical intervention may all be necessary. Even though I don’t believe Cefaly worked for me, I still use the Cefaly regularly.  If nothing else, it does feel really good during a headache or migraine attack, and occasionally I notice a reduction in pain after use.


CEFALY II AND FUTURE POSSIBILITIES FOR FIBROMYALGIA

Just this week, Cefaly announced the release of what they are calling the Cefaly II, exclusively to the United States.  It works the same as the first Cefaly, except it is a smaller device and sits on the forehead magnetically, instead of the larger band. Because Cefaly II is so much smaller, it is easier to travel with and even “wear” out in public. (You won’t see me out in public wearing
either device.) It also comes with a power cord and adapter for recharging the battery, whereas Cefaly I requires 2 AAA batteries. The cost is still the same. For $349 USD, you get the Cefaly and 3 electrodes, plus shipping and handling, for a total cost of $364 USD. Keep in mind, the Cefaly requires a prescription and most insurances do not cover it. There have been reported cases in which insurance companies paid a partial amount, but you need to contact your own company to find out. There is also the added cost of replacing electrodes approximately every three months or less which costs $25 for three. Given Cefaly is having around a 50% success rate, I think it is definitely worth giving it a try if you can afford it. Worst case scenario, it doesn’t work and you simply return it in 60 days for your money back.

I recently learned on the Cefaly website about the exciting possibilities for the use of Cefaly in Fibromyalgia. Cases of Fibromyalgia in America, particularly in women, are on the rise and like chronic migraine is extremely difficult to treat. The University of Cincinnati announced earlier this year, they were beginning clinical trials to see if Cefaly was also effective for the chronic pain associated with fibromyalgia. According to Leslie Arnold, professor and physician at the University of Cincinnati, “…Fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals,” and since Cefaly targets the pain center of the brain, there could be a great opportunity for treating fibromyalgia. The clinical trial is open to adults ages 18-65 who have a diagnosis of fibromyalgia. Everyone who enrolls will receive a Cefaly at no cost and if patients show improvement, they will go on to controlled studies. You can find more information about this at Fibromyalgia News Today.