A Few Things Migraineurs Want You To Know

-There are many things that make migraines very individual. One main difference between migraines is the frequency: if they are chronic or episodic.

Chronic migraines are 15 or more headache days a month, lasting 4 plus hours each episode.    

Episodic migraines are less than 15 headache days a month.

 

- Migraineurs don't always look sick but we almost always feel sick. We can function under a certain pain threshold of a migraine; just because we are not in bed doesn’t mean we are migraine-free. Some migraine attacks are more severe and debilitating, whereas some migraines are mild and manageable. Each migraineur knows their body and what their limitations are. We often try to push ourselves, but it is healthier for us to listen to what our body is saying to make the best decision for our health.

-Migraines are considered an invisible illness. Invisible illnesses are deceiving because although we may look healthy, we are often in pain. People who are around me often and are migraine-aware notice paleness, droopy eyelid and face on one side, shaking, vomiting, etc. However, my symptoms are not always so obvious.

- Don’t let one good day fool you. Just became a migraineur posts pictures where they are seemingly happy and well does not mean there aren't medications involved in order to make that day possible. I often plan accordingly; if I know I have a busy week or a lot of obligations coming up, I try to build breaks into my schedule and not over commit myself.

-Saying “No” isn’t easy. Migraineurs often bare the guilt of constantly flaking on commitments, so we really hate to say no or let someone down even if we know it’s better that we don’t over-commit.

-We DO NOT cause our migraines. Being emotional or stressed is not causing me to have migraines every day. Stress may contribute or trigger a migraine, but it is not causing chronic migraines. Migraines are a neurological disorder and are often genetic, but the exact cause is unknown/varies.

-We don't mean to be rude when we don't eat your food or finish our plate. Surely, your meal or restaurant choice was delicious. There is a good chance that we are nauseous, have been throwing up, are have a hard time maintaining an appetite, or are sensitive to the food served. Diet is complicated and individual for each migraineur.

- Not all migraineurs get visual auras, although auras are often an associated symptom of a migraine and can be a precursor of a migraine episode for some migraineurs.

- Migraines can be debilitating and are considered a disability.

-Migraineurs are not lazy or flaky, we would love to pursue greatness and achieve excellence. Imagine reading with a throbbing ache behind your eye. It becomes very difficult to focus on anything other than your pain and makes learning, memorizing, and concentrating difficult.

-Don’t mind the personal pharmacy in our bags. Many migraineurs are self-conscious about the amount of drugs and other remedies that they need to have on them. Migraineurs may also be self-conscious of scars from injection sites and IV’s or bruises from treatments. Personally, I take these potentially awkward moments as an opportunity to educate people who are interested and ask. and I’m always happy to help out a friend in need with a band aid, Advil, or whatever else I may happen to have.

-May migraineurs don't mind questions, but please, don't give us unsolicited medical advice. Although you are likely well intentioned, this can make us feel even more hopeless if we have already tried your recommendation. Showing an interest and being nosey are two different things!  

-We are sorry for blowing off our plans. Trust that we would rather be where we were expected to be with you than bedridden wanting to cry because you’re in so much pain.

- We do not have a low pain tolerance; in fact, it is often the opposite of that.

-If we seem irritable or rude, there’s a chance we are getting or having a migraine. Think about how you feel when you are sick or in pain, and imagine that being constant.

-If we ignore your texts or calls for hours we are probably sick with a migraine and trying to sleep through it. Also, screens are bright and make migraineurs even sicker.

-No, we are not hung-over or pregnant, and it's not funny to make light of our serious symptoms. Nausea and vomiting are common symptoms of migraines, which can be severe at times.

-We appreciate it when you notice the extra effort. It takes for us to do something that normally wouldn’t be a big deal. Little things like driving, showering, getting ready, and traveling can be really difficult for a migraineur.

-Not all migraineurs are depressed. Although depression can be comorbidity with migraines, many migraine symptoms are similar to diagnostic traits in depression like sleeping a lot, decreased appetite, headaches, sadness, etc. We can be happy but still unhappy about having migraines!

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11 Things I’ve Taught Myself About Migraines

Image: @Imafoodie

Image: @Imafoodie

Educating myself on migraines has been a process. You hear different things from different doctors, which is why advocating and educating yourself is crucial.

Here's what I've gathered thus far from my time researching:

#1 – Migraine Patients Understand Pain

-Migraine patients are abnormally empathetic individuals; they internalize stress in their environment and are overly sympathetic to others who appear to be under stress or upset. We are highly in tune and sensitive to our environments, including weather, odor, stress, light, foods, etc. Because of this, our nervous systems can become over stimulated.

#2 – Migraine Auras Are Unique for Everyone

-It may seem odd, but odor auras are very common; I too suffer from these, usually from pet urine. I do not get visual auras with my migraines, but this is also a common symptom. I do have serious sensitivity to light and movement and am often nauseated by any stimulus.

 #3- If You’re Hypermobile (double jointed), You Might Be More Prone to Migraines

-I've been told that individuals who are considered to be "double jointed" or hypermobile, (which I am in almost every joint), are more prone to migraines. There is no explanation for why this is as of now.

#4 – Migraines are Genetic, but Intensity Varies

-Migraines are genetic. My mom still gets migraines and is treated for them, but lives a relatively unaffected life (so there's hope!). My grandma and great grandma had migraines for a period of their lives. My little sister shows early symptoms of migraines as do a few of my cousins. No one seems to have them as severely or debilitating as I do. Migraines, in any form, are a true disruption to quality of life. Raising awareness has opened my eyes to how many individuals suffer silently. It can be reassuring to meet others with your condition and reaffirm you are not alone in this! For instance, it really eased my mind to meet a fellow patient that was overusing her medications the same way I did. We both have had to use up to seven high potency injections in 24 hours during very strong episodes. After talking more with her and then with Dr. Saper, the founder of MHNI (my current physician), I was relieved to find out that it is not my fault; this often happens to patients when their doctors are out of treatment options, but it can be repaired, and again that it is not my fault. Both of them understood the survival mentality of getting through each day at a time during bad cycles when your thought process changes as your brain checks into the fight or flight response.

“When we feel threatened, our bodies go on high alert, preparing it to ward off the adversity whatever or whoever that may be. Our bodies undergo physical and emotional changes that affect how we feel, respond and react. For example: when the body endures a prolonged period of pain, the sympathetic nerves go on high alert triggering the onset of symptoms such as nausea, vomiting and diarrhea. Once the sympathetic system is on guard, other systems in the body begin to malfunction such as the body’s ability to digest food correctly – it delays the contents in the stomach from being emptied into the small intestines, making it difficult for medications to be absorbed” (Fight of Flight)

 #5 – Everyone’s Migraine Experience is Unique

-Migraines are unique to every individual; every Migraineur experiences migraines differently and responds differently to treatments and drugs. What works for me may not work for another patient.

#6 – There is No Magical Migraine Drug

-Currently there are no drugs on the market for the soul purpose of preventing migraines. Other drugs such as anti-hypertensives, anti-depressants/anxiety, anti-consultants, opiates, anti -inflammatory,  and vasoconstrictors are used at varying dosages to help prevent migraines.

Since there is nothing specifically created for migraine prevention, treatment options are limited and very individualized. I typically respond the most to anticonvulsant medications but have had to switch several times due to the severe side effects and lack of improvement.

#7 – Side Effects of Treatments Can Be Rough

-The side effects that come with all these medications add to the struggle and complicate migraines further. I lost a lot of hair and gained a lot of weight on my last trial of anticonvulsants. In the past, I've lost a lot of weight, gained weight, lost feeling in my limbs, or gotten a numb tingly feeling throughout my limbs, and had memory problems such as aphasia, where you forget words/thoughts in the middle of talking. While I would opt to be bald and fat if it meant no migraines, the side effects usually come along as the medication’s effectiveness wears off.

#8 – Sick Children May be More Prone to Migraines Later On

-Children who were commonly sick with strep throat, ear infections, etc. may be prone to migraines and other chronic conditions as the typical treatment of these illnesses, antibiotics, can deplete the good bacteria in the gut, making it more difficult to fight off infections.

#9 – Migraines are “Comorbid”

-Migraines are co-morbid with many other conditions. For me, it's allergies, chronic sinusitis, TMJ, occipital neuralgia, and neurologica. There is a multitude of other conditions that are linked to migraines.

#10 – It’s Always More Than “Just a Headache”

-Migraines are more common than you might think. By openly sharing my condition I’ve come across so many people who also suffer or know someone who suffers from migraines. There are different types of migraines with different diagnostic requirements for each. Two types of chronic and episodic are characterized by how frequently they occur. Chronic migraines occur more than 15 times a month, and episodic migraines occur less than 15 times a month.

According to The Migraine Research Foundation:

-Over 12% of the population, including children suffer from migraines.

-Nearly 1 in 4 U.S. households have a migraineur.

-Migraines are the 8th most debilitating illness in the world.

-About 14 million people experience chronic daily headache.

-American employers lose more than $13 billion each year as a result of 113 million lost workdays due to migraines.

#11 – You and Your Doctors are a Team

-Doctors are people too; they don’t always know everything, especially when it comes to migraines. Ultimately, it is up to you as a patient to advocate for yourself, research all options, and educate yourself. Double check your prescription interactions, as even doctors make mistakes. Educate yourself so the care you're receiving is the best it can be. Ask your doctors questions, look things up, and come in with a list of questions even if you feel annoying--it's their job to listen.

-“There is no condition of such magnitude - yet so shrouded in myth, misinformation, and mistreatment - as migraine”. Joel R. Saper, MD, Chair, MRF Medical Advisory Board

 

References

"Fight Or Flight | Migraine Treatment Group." Migraine Treatment Group Fight Or Flight Comments. N.p., n.d. Web. 05 Apr. 2016.

"Migraine Research Foundation -- Fact Sheet." Migraine Research Foundation -- Fact Sheet. Migraine Research Foundation, Apr. 2016. Web. 05 Apr. 2016.

 

 

Olivia Rehberger (LivDelReh)

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What's Your Full Time Job? One Young Woman's Story of Migraine Managment

Using my Cefaly Headband.

Using my Cefaly Headband.

A lot of people ask why I share this aspect of my life, it’s not for attention or sympathy. I mainly share because my life has fundamentally changed since my migraines became chronic and debilitating around the age of 20. In many regards this condition has taken over my life. I share as a way to keep all of my very large extended family up to date on my progress. I also share because I hope to leave those who are interested with a little more education on what exactly migraines are and what it is that us chronically ill/invisibly ill patients live with.

We don't receive the same sympathy someone with cancer or a more understood condition might, instead we deal with a heck of a lot of stigma that makes our lives even more challenging. I hope to relate to those who are afflicted with a condition like mine and to educate those who don't always understand what chronic conditions look like and mean.

I have met many other migraineurs through sharing my journey. I enjoy advocating and teaching people about this condition based on my education and experiences the best I can. Please don't hesitate to reach out (direct/private message, comment, etc.) if you're confused or have any questions that maybe I can answer!

I don't need anyone to feel badly for me, or anything like that. In fact, I don't feel bad for myself. I find myself saying a lot, “Everyone has something," and it’s true- if not a chronic illness, every individual is facing some adversity and making it through it, some people unfortunately find themselves in worse situations than my condition has left me with. Those people offer me encouragement, hope, and perspective. I believe that this is just a part of my life- not my destiny and I believe it has made me stronger in ways I never could've imagined. Support, understanding, and encouragement are some things I am always happy to accept. I can't express how much my families’ support has meant to me throughout this, their efforts to learn more about my condition is honestly touching.

A major reason I continue to share is that I have met many other migraineurs along the way and I like to share new treatments, medications, and the progress I have made, as well as see how they are progressing. I network amongst them and we bounce ideas off each other, share what our doctors are trying, and ultimately offer each other a lot of moral support. Shout out to my migraine sister warriors; you guys get it, no explanation required. I think and pray for you ladies daily and I have confidence that we will all find relief permanently one day! There is always hope in new research and dedicated physicians!

Now to the real reason for THIS post. I am frequently asked a lot of questions; why this clinic is different/ have they figured it out yet/ am I better now/ what’s causing all of this?…etc.  I wanted to take the time to clarify some of these frequently asked questions I receive and update everyone on where I am at in my pursuits for improved health.

Migraines aren’t like a cold, where you take medication (antibiotics) and it goes away, or like cancer where you can be pronounced in remission. Migraines are a chronic condition, there is NO cure. For many, like myself, migraines are a daily part of my life and I have to adjust accordingly. I will still have bad days or cycles and that doesn't mean that a clinic or medication or doctor didn't work. It is discouraging at times that things don't work 100% or that no doctor can guarantee a cure, but you learn how to manage your chronic condition and with the right team of doctors and concoction of medications and treatments that are completely individual for each patient, things can start to look up. I may be speaking totally prematurely and what's working for me this month may not be enough in the future, or could go the other way and be cut back to less dosage and less treatments. It flows and there are ups and downs that come with this condition. Especially for those who are close with me and see me or talk to me daily, they can tell a bad day from a good day and clearly see how my personality and behavior changes as I become sick or as the pain becomes debilitating. There is a plan in place for those days and sometimes it works better than it does other times but again, that's okay.   

This clinic, Michigan Headache and Neurological Institute (MHNI) in Ann Arbor is different because it is renowned for being a top facility in migraine treatments with leading physicians and specialists that treat migraines specifically and have researched them for their entire careers. Celebrities go to MHNI... I guess we can go ahead and add me to that list!

Botox treatment

Botox treatment

They have a program where they refer severe patients who meet a certain criterion to the local community hospital, St. Joseph Mercy Chelsea Hospital in Chelsea, Michigan where they offer an inpatient head pain unit of the hospital, who's doctors have a close professional relationship with the doctors at MHNI. Over Christmas break I made appointments for the Northwestern Neurologist I was referred to and she agreed to treat me but first wanted me to be seen at MHNI.

After being seen at the MHNI clinic as a new patient, I exceeded the criteria (like a college applicant) for the inpatient program. I spent a little over a week in the hospital, in the inpatient head pain unit and then followed up my care at MHNI. Ultimately MHNI will work long term with my primary physician/neurologist at Northwestern to carry out my treatment plan. This is different because it takes time to develop relationships with the top physicians in these fields and to get referrals and be on waiting lists and schedule appointments that I'm traveling long distance to currently, and have medical records sent…etc.

 It is honestly like a full time job to coordinate all of my health care; between prescription refills, medication deliveries, scheduling appointments, getting blood work, working with insurance, finding physicians, researching my condition/medications/doctors/etc, rescheduling missed commitments due to sickness, filling my medicine tray for the week, keeping a pain diary, organizing all my medical records, sending test results/medical records, paying medical bills, organizing myself as a disability student and all of the extra work that comes with that as well- it can be a lot to handle, even though a lot of these efforts aren’t things people typically consider.

Prior to being treated at MHNI, I was exhausting all options for care in my area (Columbia and Kansas City). With the help of Paul's mom Ann, I was able to get referrals to physicians in the KC area where I have been treated for the last three years regularly. After being hospitalized this summer (2015) at the University of Missouri Hospital and working with every Neurologist in the Columbia area, and exhausting care options in KC; I had exceeded the care available to me by those physicians.

After three years of failed treatments, procedures, medications, hospitalization, etc, it was time to move on to more specialized care. I was seen at a clinic in Springfield, MO, which is actually surprisingly enough renowned as well. Dr. Cady is very well known in the migraine world and I was referred to Dr. Cady’s Headache Care Clinic by both my KC physicians and my team of neurologists at the University of Missouri Hospital. As many of you know my experience at Dr. Cady’s clinic was very disappointing and didn't result in any change in my daily chronic migraine. While I was left feeling very hopeless, I had no choice but to pursue my quest for relief.

My neck following Facet Blocks at Chelsea Hospital, Head Pain Unit

My neck following Facet Blocks at Chelsea Hospital, Head Pain Unit

Does that really answer why this is any different? I guess MHNI are where patients like me go, when you’re every doctor’s worst patient and nothing has worked for you (a failed patient). I am not their worst patient, in fact several other patients I met at the hospital are struggling even more than I am (which puts it all in perspective of course).

I am confident in their treatment plan and trust this team of doctors and I am going to pursue this with an open mind and cautious optimism. My goals are realistic, I don't expect a cure, I just want to get my life back so I can function normally and have a plan to treat a migraine when I get one which hopefully on this treatment plan will be much less than daily with my new preventatives…time will tell. Patience is necessary. It's a long-term commitment and I have short-term and long-term health goals I am working away at everyday.

New treatments include being completely detoxed off of triptans, which are a common abortive medication, but are also commonly over prescribed and overused, which can ultimately create more problems.

At this clinic, I do not even have triptans offered to me and they have, for the time being, been completely eliminated from my treatment program until I can repair the damage done to my neural pathways. I am on a completely new regiment of preventatives/vitamins/daily medications non-medical options to control everything from migraines, allergies, sinuses, neck pain, TMJ etc. and I have a new abortive plan for when I do get a migraine that doesn't include triptans at all and so far has been pretty effective at lowering my pain level to something manageable. There have been other obstacles that have come up in this process but we are working around them, as I said patience is required throughout this rather slow progress.

New meds on the left, old meds to the right

New meds on the left, old meds to the right

Migraines and IBS: New Study Released

Photo by Sadhana G, Flickr

Photo by Sadhana G, Flickr

Migraines are painful, but not knowing what causes them can be the most distressing part of being a migraine sufferer. Nonetheless, researchers are relentlessly searching for clues that will guide them towards answers. The most recent migraine related finding? Migraines could be linked genetically to irritable bowel syndrome. In a news release by the American Academy of Neurology this week, the author of the study, Dr. Derya Uluduz said “Since headache and irritable bowel syndrome are such common conditions, and causes for both are unknown, discovering a possible link that could shed light on shared genetics of the conditions is encouraging.”

The study included 107 migraine sufferers, 107 IBS sufferers, 53 tension head sufferers, and 53 people not suffering from anything. The results showed that the highest correlations fell between migraine sufferers and IBS sufferers. 54% of those with migraines also experience IBS, and 38% with IBS experience migraines. With tension headache sufferers, the results were 28% and 24%, respectively.

In addition to a high correlation of symptoms, IBS, Migraine, or tension headache sufferers had a genetic similarity as well: they all had at least one gene differentiation than those not suffering from any of the three disorders.

So, does this mean if you have IBS, you’ll likely experience migraines and vice versa? Well, not quite. "Discovering shared genes may lead to more future treatment strategies for these chronic conditions,” Dr. Uluduz said in the release. However, he noted that further studies are needed to find out more about the genetic links between IBS and Migraines. You can read the full news release here.

If you’re one of the 37 million migraine sufferers in the U.S., tell us what you think about this new study and possible link between migraines and IBS on our MigraineChecked social pages:

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Sources:

American Academy of Neurology, news release, Feb. 23, 2016

 

Stress: Conquering the Five Points of Control

meditation-at-work-585x390.jpg

How would you define stress? Well, it would depend on many different situations of course. It can be defined as the day-to-day problems that come up: your angry boss, the crazy driver who almost ran into your car, the pressing deadline at work, or that line at the super market that never seems to move. So, why does it seem like some people get stressed out over certain situations, eventually making themselves ill, and some take it with a grain of salt? It clearly is not the stress that causes us to make ourselves sick, but rather our response to it.

As we begin to stress out, there are somewhere between 20 and 30 different stress hormones that are released into your bloodstream and they can have a massive affect on your body (1). You experience symptoms like rapid breathing and heart rate, sweaty palms, and muscle tension. This is a result of the sympathetic nervous system jumping into overdrive and as it begins to produce these symptoms, the parasympathetic nervous system is shut down as a result.  This part of the nervous system is responsible for immunity, repair, digestion, sleep regulation and sexual function (1). Now, you can see why stress is so damaging to the human body!

What hurts us in the end is continual stress because this leads to chronic inflammation of the immune system which can lead to digestive issues, weight gain or loss, depression, migraines, high blood pressure and high cholesterol levels. What is important to remember is that you cannot control external events, but you can control how you react to them. What most people tend to forget is this is the secret to managing stress: control. Here are five points of control in order to mange the stress in your life:

Physical:

·      Nutrition- “You are what you eat:” How we fuel our body is how we fuel our emotions. Make sure to always eat a well balanced diet filled with vegetables, fruits, whole grains, healthy fats, and lean protein. It also helps to monitor your alcohol intake as well: 2 drinks a day for men and 1 drink a day for women (2).

·      Physical Activity- Not only does this improve your appearance, but it helps you control your emotions as well.  Aim for 2 hours and 30 minutes a week of physical activity, including cardio and resistance or strength training (2).

·      Sleep- Sleep is significantly important for an emotional well-being since it improves brain activity and repairs the heart and blood vessels (3).  Take time to relax after work instead of jumping on your unfinished work and emails right when you get home.  Adolescents should get between 9-10 hours of sleep a night where as adults need about 7-8 hours (3).

Time:  Use your time wisely to do the things that matter most and learn to say “no” to things that do not matter. Mentally plan your day in outline, starting with the outcomes you want to create and then the activities needed to achieve them. Then estimate how long each will take and schedule the activities into your day (1).  It is important to leave plenty of gaps in your outline so when unexpected things come up, you are not stressing out over them.

 Environment: Take control over your environment by tidying it or rearranging it while also paying attention to the small aspects that bother you. This can range from moving furniture, home improvements, tidying up your office desk, or cleaning up your computer desktop. Keep making changes you can control to your environment and focusing on the affects they make.

 Mental:  When we begin to feel stressed out, we tend to focus on our attention towards fixing the situation and how it may continue to go bad. What we need to do is turn our focus towards overcoming short-term set backs and being grateful for what we already have in our lives. This gratuity can be as simple as being grateful for your health, family and friends or even a small good thing like the nice meal you had for lunch today.

 Attitude: A resilient attitude is key for handling those unexpected and overwhelming situations. Positive emotions activates the ventral striatum area of the brain and further research has proven that continued activation of this part of the brain has been linked to healthful changes in the body, including lowering the levels of stress hormones (4).  Self-affirmation- thinking about what is most important to you in life- leads to a more resilient version of an individual and eventually leading to a control over the positive and negative emotions.

The take away from stress is that it is a natural part of life, no matter how hard you try and “get rid of it.” In the end, we must accept it and then turn our focus towards how we maintain our bodies, environment, attitude, mental wellbeing and our time. Once these five points are instilled within us as habits, “being stressed out” will be a saying of the past.

 

References

1.)  Brilliant Stress Management: How to Manage Stress in Any Situation. Clayton, Mark Ph.D. Pearson UK. Oct. 2011

 

2.)  http://healthfinder.gov/HealthTopics/Category/health-conditions-and-diseases/heart-health/manage-stress#take-action_2

 

3.)  http://www.nhlbi.nih.gov/health/health-topics/topics/sdd/howmuch

 

4.)  https://newsinhealth.nih.gov/issue/aug2015/feature1