What You Need To Know About Headaches……Part 3

I had hoped to get my migraine series finished before the end of June, which was migraine awareness month. However, sadly I spent most of the last week of June in the hospital with a MIGRAINE. I had dealt with it for over ten days and finally waved the white flag, cried uncle and went to the hospital. I was hoping that I would be able to break the migraine by just getting medications in the ER. But no luck, I had to be admitted for four days. So finishing this treatment section of the migraine series seems appropriate, as I spent the last couple weeks living in this phase of a migraine.

So how do you treat a migraine??? Well, that’s really a hard question to answer. What works for me may not work for you and vice versa.  And I have found it to be more a case of trial and error of what might work. I have tried SO MANY medications and treatment options over the years. Even thought I have been on this migraine journey for over 15 years I am not totally sure that I have found the perfect mix yet. In the early years I only had migraines periodically, it wasn’t until the last three years that they have really become debilitating.  I also didn’t start having the hemiplegic (stroke like) migraines until 2016. One of the big things I can’t stress enough when you are on the search for the best treatment for your migraines is to keep a journal of your symptoms, what you did, what you ate etc on the day of your headaches so you can see if there is something recurring with each migraine. So lets dig in to treatment options.

The most common treatment for migraines are medications. Whether you take over the counter meds, preventative meds or meds for the acute head. Below you will see the each type of medication explained.

  • Over the counter (OTC) medications are medications that can be bought without a prescription on the counter at any pharmacy.
  • Acute medications are used as soon as a migraine is happening. These are also known as abortive medications.
  • Preventative Medications are used on an ongoing or routine bases, in hope that they will prevent or reduce future attacks. These can also be called prophylactic medications.

Over the counter options for acute symptoms include:

  • Excedrin Migraine
  • Ibuprofen which is also known as Advil and Motrin
  • Naproxen which is also known as Aleve
  • Aspirin (you need to check with your physician before taking this medication as it is also a blood thinner)
  • Acetaminophen which is also known as Tylenol

Examples of prescription drugs you might be given to take for acute (when the headache is happening) symptoms include:

  • Triptans are a class of medications that deal with the chemical Serotonin in the brain, which helps to diminish the swelling of the blood vessels that cause the headaches. These drugs are primarily used in the treatment of acute headaches. This method of treatment goes back to the 1950s. Examples: Maxalt & Imitrex.
  • DHE 45 became a treatment for migraines in the 1940s. It is only used to treat migraines in the ACUTE stage and should not be used as a preventative medication. This medication is available as an injection, IV drip and nasal spray.
  • Ergotamine is a medication that is used for a SPECIFIC kind of headache. It is used to treat vascular and tension headaches. The medication works to narrow the widened blood vessels in the head, which in turn reduces the throbbing effects of vascular headaches. This medication is also used only in treatment of acute headaches.

Examples of medications that are given as  preventive or prophylactic prescription medications include:

  • Beta blockers (Use caution with these as they can also lower the blood pressure and heart rate) This group of medication is used as a preventative medication to treat migraines. They work to relax and open up blood flow thus reducing the frequency of headaches.  Examples: Propanolol or Toprolol.
  • Calcium Channel Blockers (Use caution with these as they can lower the heart rate) This group of medication is used because of the way it works, basically the end result is that this group of medications prevent contraction of the muscle wall of the artery.  Examples: Procardia or Verapamil
  • Antidepressants are often used as a preventative medication for headaches because the tricyclic antidepressants also work to treat chronic pain. Thus they work well for migraines.  Example: Elavil
  • Anticonvulsants this group of medication work to calm the hyperactivity in the brain. Example: Depakote, Topamax, Gabapentin

There are also many other options for migraines. One of the most common is the Complementary & Alternative Medicine. This option includes any medicinal products or practices that are not part of modern medicine. Alternative medicine can be defined by its use an an alternative option to traditional modern medicine. Complementary medicine is used in conjunction with traditional medical treatment. These treatments could be things like: any natural remedies like herbal medications or treatments, vitamins, minerals or any kind of supplements. There are many options of herbal medications, which I have tried, the one I personally had the most luck with was feverfew. Other options would include meditation, yoga, biofeedback, acupuncture, tai-chi. Or even body-based practices like chiropractic adjustments or massage therapy. Like always, before starting any new over the counter medication, herb or supplement. Or any increase in physical activity please check with a dr before doing so!

In addition to medications and alternative or complementary therapy, the U.S. Food and Drug Administration (FDA) has now approved two different nerve stimulators that may be helpful for certain people who have not gotten any relief from all other treatment options. The Cerena Transcranial Magnetic Stimulator is a device that has been approved for anyone over the age of 18 who have migraines that are preceded by an aura. This specific device is help to the back of the head and will deliver a pulse of magnetic energy.

There is also a vagus nerve stimulator that has been approved for use in adults with migraines, as well as those who suffer from episodic cluster headaches. This device is hand-held and is placed over the vagus nerve in the neck and it releases a mild electrical stimulation to reduce pain.

In 2010 Botox, previously primarily known for its use by plastic surgeons, was approved for use with chronic migraines. Currently the FDA has only approved Botox use in those with chronic migraines, which means a person must have 15 or more headache days a month. Research shows that the more frequent the headaches the better the Botox result will be. Botox is given as approximately 30 tiny Injections around the head, the injections are given around pain fibers that are involved in headaches. Botox will enter the nerve endings around the injection site and then blocks the release of chemicals involved in pain. This in turn prevents activations of the pain networks of the brain. Patients who receive Botox can only receive injections every 12 weeks. And it generally takes 3-4 treatments at least to begin to fill the full impact it may have. Botox requires pre-authorization by the insurance company before it can be given. Along with very detailed documentation by the doctor regarding the frequency and duration of your headaches.

In early 2018 the FDA approved the first drug of its kind for migraines. It is said to reduce the number of migraines among those who are prone to migraines. Most of the medications currently used for migraines are used to control the symptoms. The new drug, called Aimovig, is designed to reduce the number of migraines among the population who suffer most frequently. One of the largest studies done during the testing stage showed that the number of migraines dropped from eight to fewer than five. This medication is given as an injection, much like insulin, delivered by a pen-like device. The one big downfall for some is that the medication will cost around $6,900 a year, and insurance coverage is not completely decided at this point!!

I hope each of you enjoyed this series on migraines and that maybe you learned something you didn’t know. I know I learned a LOT while doing the research for this series. Migraines are so complex and I could have probably written a five part series or even more. There are so many options of medications available along with many more non-medicinal treatments available, than in years past. And so much research is being done to find the best treatment available for migraines. I didn’t cover Botox in much detail and there is a lot of information I could share. If you are interested in learning more about Botox or the new medication Aimovig leave me a comment and let me know. Also, if you have a condition that you would like me to do a series of posts on let me know and I will dig in and start my research. This has been pretty popular so I am looking forward to doing more multi-part series in the future.

With Love,

Amber

The Day I was Treated Like A Drug Seeker

* This is about my personal experience not a topic to be debated about the use of narcotics.

I went to my local ER last week because I had been dealing with a migraine for almost two weeks. Sadly, is not uncommon for me to end up in the ER for a migraine. In fact that usually happens at least a handful of times every year. Unfortunately I generally end up being admitted for said migraine at least a couple times a year. So I know how things work in this ER and Hospital. Especially since I actually worked as an RN in this hospital for 9 years. But this time was different.  I had the worst experience I have ever had in that hospital. I have NEVER been treated as poorly by as many medical professionals in such a short time span as I did that visit. And that’s saying something because over the last five years I have been there MANY times and have been cared for by MANY nurses, physicians and other providers. Due to the fact that I am no stranger to the hospital, and the fact that I have MULTIPLE invisible illnesses I am not unfamiliar with being looked at like I am drug seeker.  But this visit took that to a WHOLE NEW LEVEL.

I had barely made it into the room in the Emergency Room when this male who I assumed was a nurse came in and without telling me who he was or anything his first words were “I see you take X & Y at home for pain did you try either of those?” Okay, fair question. I calmly explained that they can cause rebound headaches so I don’t always try them for headaches. He proceeded to tell me that I wasn’t going to be receiving any narcotics while I was in the ER that day.  He then went on to ask me what has worked on my migraines in the past. My mom answered that question as I was not totally able to think straight after that long with a migraine. She told him that a low dose of Ketamine has worked for me really well for me in the last. Continuing on to tell him the last time I received it the nurse had never heard of it being used for migraines either so the Doctor took him aside and showed him literature on the studies that have been done. Those studies show that Ketamine at a low dose works well for migraines. And before she finished her sentence the nurse shot that down and said there was “NO WAY” I would be getting that today because its a sedative and not for migraines.. At this point I didn’t know what to even think. Honestly, I was ready to leave and say forget it.  But that wasn’t the last run in with that nurse I would have before I was admitted.

I had a port placed three years ago due to the fact that I don’t have good veins anyway and then I took years of high dose steroids which killed the veins I did have.  So I always request that my port be accessed. He REFUSED. He said I had great veins and placed a peripheral.  I wasn’t in any condition to argue. Because he was so asinine I ended up with five sticks which should have been one.  But I did enjoy when the ER doctor put him in his place and let him know that he would in fact be giving me Ketamine for my migraine. HA!!!

I was really hoping that the Ketamine would work like it had in the past and I would be able to go home. But it didn’t……. So they called a hospitalist to come in and see me so I could be admitted to the hospital.  As he walks in the room he introduces himself and announces “I DO NOT GIVE NARCOTICS FOR HEADACHES, JUST SO YOU KNOW! Again, that word had not come out of my mouth since I arrived. He like the nurse was making an assumption of why I was there based on what he saw on the chart, without actually seeing or talking to the person behind the medical record. I really hadn’t even thought about asking for any narcotics because I know that it can actually make a headache worse. He asks me a few questions and says he won’t be admitting me its a neurology issues, and leaves. The nurse I loved so much comes back a few minutes later to tell me that they were taking me upstairs. When I asked who the admitting doctor was they told me it was Dr. Pleasant Pants that I had just seen. I was less than thrilled.

Once I was taken upstairs and settled into my room, a neurology doctor who I didn’t know showed up to see me. And AGAIN for the THIRD time in less than three hours, this doctor identifies herself and before I can say anything she says “I DO NOT GIVE NARCOTICS FOR MIGRAINES, JUST SO YOU KNOW.”  Yet again I had never asked for an narcotics or even actually thought about asking for one.  Like the two before her she was also making an assumption about why I was there and what I wanted before even seeing me. By this point in the day I had nothing to say I was so blown away that I just looked at her. I didn’t have anything to say I just agreed with her plan of care and went on with it. At that point I would have tried anything to get the headache to go away. And anything I would have said in that moment to this doctor would not have been nice or helped my case in any way.

Sadly, during my entire four day stay in the hospital there was only one nurse that would actually give me my home pain meds. In fact she actually brought them to me without me even having to ask for them. The other nurses didn’t think I needed them because I was getting “the migraine cocktail!” And that is true, I didn’t need my home meds for the headache, I needed them for the rest of my body. All the other parts that hurt besides my head.

I know, everyone is all in an uproar by the new changes that may be coming with narcotics and the doctors are being more careful with what they prescribe and to who. But anyone could look at my record if they really took the time and see that there is more than enough reason for one or even both of the medications I take. And if they looked more closely they would also see that my scripts last me on average 45 days rather than 30 because I don’t take them as often as they are prescribed. If they took time to look further than the med list they would see a person. A person who believe it or doesn’t really care for the way pain medicine makes me feel. I don’t enjoy being nauseated and itchy when I am already itchy all the time from my illness.

It just frustrates me to no end that the people in the world who have abused the drugs have totally messed things up for those of us who need them. Because people choose to take narcotics to get high it is becoming increasingly hard to get pain meds for people who really truly need them. Many of us need something to be able to get out of bed in the morning. Or to take a shower, or to do any daily task. But because of those idiots many are being refused. And sadly there have been a number of suicides in the chronic illness community due to the fact that they were refused the pain meds they relied on.

I have not shared this earlier because it took me awhile to process it. To really think about how it made me feel and how I could share this best to get my point across without sounding like I was whining. I just wish medical providers would look further than a med list. Or even the list of diagnoses. Behind those things there are people, people who never asked for these life altering diseases, people who didn’t ever do anything to deserve the fact that we are living in chronic pain. Many of us who really need the pain meds would not be able to function or have any semblance of a normal life. And if it comes to the point when none of us have access to those meds a lot of us wont be able to get out of bed, much less work and be a productive member of society. Many of us would gladly trade every last pain pill for the ability to go back to the life we had before we got sick. If i could turn in my pain meds and magically be healed i would be the first in line. Sadly, that doesn’t happen! I can’t speak for all of the people with chronic pain due to a chronic illness, but personally I have tried all other methods of pain relief. I have tried meditation, acupuncture, massage, physical therapy, water therapy, over the counter meds, pain rubs, heat, ice. You name it, I have probably tried and it just doesn’t work the same way that pain medicine does.

At this point the only thing I think we can really do is to start writing letters. Letters to those who represent us in our local, state and federal government.  I am not a political person and I normally don’t include things like this in my blog but I think this is all we have left. I think its time for a CALL TO ACTION for all of us who suffer from chronic pain. We have to be proactive and start writing letters, telling our stories and getting them out there. If we don’t share them, who will ever know what we really live through on a daily basis. They need to know that we are being treated the same as drug seekers, the same as drug addicts or not being treated at all. They need to know that we didn’t choose this life but it has happened and we are doing out best to make the best out of the hand we were dealt and having out pain medications taken away is not the way to do it.

I know in the past people have probably assumed I was drug seeking because when you present to the ER, for a migraine or back pain or a lupus flare that causes pain all over the body they can’t see it. They don’t see our pain on a lab test or an X-ray so they just assume that we are just there for the meds.  When it reality we just want to do whatever it takes to get the pain away even if that’s just a shot of steroid. Healthcare workers have sadly become so jaded by the “opioid crisis” that they can’t see past it. I know from many years of experience as a nurse that it is easy to assume that drug seeking is occurring when someone asks for pain medicine without asking any further questions.  We have to start advocating for ourselves, as I always say if we don’t advocate for ourselves no one else will.  Sadly, I did not do a good job of doing that this time around  because I felt so bad. But I wont stand to be treated like this again.

I am lucky to have a multiple people who act as advocates for me for, will stand up and fight for me when I can’t. My Mom has become my biggest advocate as she has sat in the ER waiting rooms and at my bedside hours in end without complaint. Just to make sure that i get what I need. Many times she is my voice when I can’t speak up for myself. If you are in a situation where you don’t feel as though you can stand up for yourself take someone with you. If you can, take a family member or a friend with you to the ER or to the Dr to help make sure you get the treatment and care that deserve.

If you need any help writing letters to your representatives or finding who your representatives are please let me know and I will be more than happy to help you however I can

Please take the time to also share this story in your communities. We have to get our stories out there, we have to find a way to be heard.

With Love,

Amber

The Truth Behind Photosensitivity

By AMY NORASummer is officially here. It means we go to the beach, we sit outside at the Ballpark, we go and plan for those wonderful picnics, we spend time with family barbecuing, it’s about the time with friends family and just enjoying those wonderful late nights at the lake. The other thing is that we are out in the Sun a lot. When you have an autoimmune disease that also means that most likely you experience photosensitivity. Photosensitivity is that nasty little friends that accompanies us everywhere. It means that we lather on that sunscreen as if, well honestly, she were our best friend. We layer it on at 2 hour intervals as if our lives depended on it; ironically in a way our lives do depend on it.“Photosensitivity is the term used to describe sensitivity to the ultraviolet (UV) rays from sunlight and other light sources, such as indoor fluorescent light. Photosensitivity can cause rashes, fever, fatigue, joint pain, and other symptoms in people with both cutaneous (skin) and systemic lupus. Excess exposure to UV rays is a common trigger for increased disease activity (flare) of both cutaneous lupus and systemic lupus.” (Lupus Foundation of America)Remember, with the 4th of July holiday coming and summer here,  have fun but also protect yourself.  Use sunscreen often, stay in shaded areas but remember you are still exposed to UV rays, wear hats, and just be smart. Lupus Love…

What You Need To Know About Headaches……. Part 1

June is headache awareness month, so let’s take some time to look at all things headache. There are said to be 150 different kinds of headaches from cluster headaches to sinus headaches. And the most commonly known, migraine headaches. Each kind of headache contains some kind of pain and that pain can be located indifferent parts of the head based on the kind of headache! We will also look at other symptoms that accompany the headache that range from nausea to double vision. Below in part one of a three part series we will talk about the types of headaches that are most common, as well as possible causes for headaches overall. So let’s just jump right in!

Most Common Types of Headaches

The two most common kinds of headaches are tension headaches and migraines so we will discuss those first.

Tension Headaches– These are the most common type of headache among teenagers and adults. Generally, this type of headache causes mild to moderate pain and come and go over time. On most occasions they have no other symptoms. It is said that 80-90% of the population suffer with this kind of headache at some point in their life. Overall, 80% of women and 69% of males will experience tension headaches. With age of first onset is usually between 9 & 12 years of age.

Migraine Headaches– These Headaches are often described as “intense.” The pain from a migraine is often described as pounding or throbbing pain, and often last from a few hours to a few days at a time. The frequency is going to be different for everyone but on average happen one to four times a month, or potentially more. Sadly most who suffer from migraines also deal with other symptoms that accompany the headache. The symptoms can range from person to person, but the most common are sensitivity to light, noise or smells. Migraines can also bring on nausea and vomiting, loss of appetite, belly pain or upset stomach. For children with migraines their symptoms can be different. They can look pale, feel dizzy, have blurry vision, a fever or an upset stomach.

Research shows about 16-17% of the population will suffer from migraines at some point, with the median age of onset between 5-8 years of age. Migraines are by far the most debilitating kind of headache. It is said that 25% of women and 8% of men suffer from migraines. Research shows that 60% of migraines present on one side of the head. 80% of migraine sufferers report that there are some kind of trigger that causes their headache. Just to give you an idea of how many people suffer from migraines and how much of their lives are dedicated to dealing with migraines. It is reported that 157 million work hours are missed each year due to migraines.

Other Types of Headaches

Cluster Headaches– Those who experience these headaches say that this type of headache is intense and feels like a burning or piercing pain behind or around one eye, and is usually throbbing or constant. It is the least common type of headache but often causes the most severe type of headache. People who suffer from these headaches often say the pain is so severe that they can’t sit still and will often be seen pacing during an attack. The pain is often said to be one sided and the eyelid can droop on the side of the pain. The eye may redden, while the pupil decreases in size or tears. The nostril on the side of the head where the pain is can either run or feel stuff. The reason they are called cluster headaches is because they tend to happen in groups. They may happen one to three times a day during a cluster period, and that period may last 2 weeks to 3 months. And each single headache attack may last 15min to 3 hours and may often wake the patient up from sleep! The headaches may disappear or completely go into a state of remission for months or years. Cluster headaches affect men three to four times more often than women.Sinus Headaches- These headaches often cause a deep and constant pain the cheekbones, forehead or bridge of the nose. They are caused by the sinus cavities in the head becoming inflamed. The headache usually does not come alone, it is usually accompanied by a runny nose, feeling of fullness in the ears, a fever, and even swelling in the face. A true sinus headache is caused by a sinus infection, which usually causes yellow or green discharge from the nose, unlike the clear drainage noted in cluster or migraine headaches.

Hormonal Headaches – Last but definitely not least. These headaches are seen primarily in women. They happen from changing hormone levels during menstrual cycles, pregnancy and menopause. Headaches may also be triggered by birth control pills in some women.

Most Common Causes of Headaches

What actually causes the pain of a headache? The pain that is felt during a headache comes from a mix of signals between the brain, blood vessels and nerves in the area. Specific nerves of the blood vessels and head muscles switch on and send pain signals to your brain. It is not the totally clear why these signals turn on to begin with.

People often get headaches due to:

Illness: Anything from an infection, cold or fever can cause a headache. Also common conditions like inflammation of the sinus cavities, an infection of the throat, or even an ear infection.

Stress: Any kind of emotional stress or depression, as well as alcohol use, skipping meals, change in sleep patterns or taking too much medication.

The environment: things like being around secondhand smoke, strong smells from cleaners or household chemicals, perfumes, allergens, certain foods, pollution, noise, lighting, and weather changes are possible trigger

Trauma: In some cases headaches may be caused by a blow to the head or rarely may be a sign of something more serious.

Other causes can include things like: eyestrain, neck or back pain, poor posture and even to much exercise.

Sadly, Headaches especially migraine headaches, tend to run in families. Most kids and teenagers (90%) that have migraines often are not the only one in the family. Most of the time there are other members of the family who also suffer from migraine headaches. Kids who have two parents that have a history of migraines have a 70% chance that they will also develop migraines. If only one parent has headaches the risk will drops to between 25-50%.

America complain about headaches more than any other medical condition. It is said that there are approximately 45 million Americans who complain of headaches every year. If you break that down it works out to one in every six people or 16.54% of the population who deal with headaches. Research shows that more than 8 million Americans will seek medical treatment for headaches EACH YEAR!

Headaches impact a huge number of people every year. The the causes of headaches are multifaceted, and will impact every body differently. There are over 150 types of headaches and they are each slightly different than the next. What causes one person’s headache may not cause the next persons. Be on the lookout for the next part of this series, during which we will be looking at how headaches may be diagnosed. And in the last issue of the series we will be looking into treatment options for migraines.

With Love,

Amber