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

What You Should Know About Allergies

Most would agree that some years are worse than others, and this year Nany feel like their allergies are going to get the best of them. Even though we have seen just about every kind of weather possible this “spring,” (I won’t call it spring yet!) everything seems to be blooming already. That means that for those who suffer with allergies and chronic sinus infections, this time of year (and fall) can be very frustrating and miserable. Allergies are not classified routinely looked at or classified as a debilitating illness. However, like many others i have talked to this spring, I am starting to feel like it possibly could be in that classification. I have been doing some research on this topic the last week or more, so I wanted to share a few of the things I’ve learned.

It seems that the best place to start this article is to start with a few definitions. I want to provide knowledge for those who may not suffer or those who may not be aware of what allergies are or can be! So let’s start with what an allergy is. By definition- an allergy is when a person’s immune system reacts to some kind of foreign substance, that is know as an allergen. An allergen could be things that can be eaten, inhaled into your lungs, touched, or injected into your body! Specific response can cause anything from sneezing, itchy eyes, a runny nose all the way to severe reactions that cause hives, low blood pressure, trouble breathing and even death! Examples of possible allergens are dust, mold, trees, grass, ragweed, pollen and food allergens such as milk, egg, soy, wheat, nuts it fish proteins.

How many people suffer from allergies every year?!? Any guesses? I was shocked to find out that allergies have been found to be the SIXTH leading cause of Chronic Illness in the US alone. This can lead to an annual cost healthcare costs of an excess of $18 BILLION dollars. It is estimated that 40- 50 MILLION Americans have allergies of some kind every year!! People of all ages can struggle with asthma, allergic rhinitis, food allergies, and eczema. Asthma is said to affect more than 24 million people in the US, including more than 6 million kids.

I’m just guessing that everyone could probably name at least 5 people right off the top of your head if you were asked who you know that suffers from allergies!! One would think that due to the fact that so many million people suffer with allergies that is would be easily treated by any medical provider. While that may be true for the every day Joe who suffers from seasonal allergies. But for those who have severe allergies that don’t respond to the over the counter meds and treatment, or has allergy based asthma, a specialized doctor is necessary. A doctor who specializes in allergies and asthma would be the best person to see. Simply because these providers received specialized education and training in these conditions. They are able to perform allergy testing, accurately diagnose your symptoms, and develop a personalized diagnosis for your specific allergies and conditions.

There are two key steps in diagnosing your allergies. One would be to take a full and thorough medical history, and the the second would be doing actually allergy testing. You are probably wondering why a full medical history would be important. That’s simply because when it comes to HUMAN allergies the person’s medical history is just as important as the actual testing. The history provides a link between the test results and the actual allergies. The history can help the provider to see what allergies your family might have and to see what certain medications, in or outside settings or food seems to make your symptoms worse. While the provider is taking your history you might be asked about the following:

  • Your overall health
  • Your symptoms and if your immediate family have asthma or allergies such as skin rashes, eczema, hives or hay fever.
  • Your symptoms. They provider will most likely want to know when your symptoms occur( what you are doing and where you are at), how often they happen, what brings them on and what if anything makes your symptoms better. The allergist may also want to know about your home and work environments and eating habits to see if they might lead to your exact allergies.

After the provider has taken a very thorough history, testing will most likely be done. Allergy testing has become the gold standard in the diagnosis of allergies. Blood and skin tests are used to detect a person’s sensitivity to common allergens. They can show allergies to things like pollen, dust mites, animals, ragweed, certain foods, latex, certain trees or plants. In most cases skin tests have proven to be the most accurate and preferred way to diagnose a person’s allergies. Blood tests are generally ordered less often, but they could be used in cases of severe skin rashes, or if the person can not stop a medication that can possibly interferes with the skin testing. Allergy tests basically give reliable results that confirm information that the provider gathered while taking the medical history.

After you’ve had a positive allergy test and you and your provider are aware of what allergens you react to, it is time to develop an individual plan of care. According to the Allergy and Asthma Foundation of America there are many options for treatment depending on the specific allergy and the severity of the allergy/reaction. The foundation states that the treatment of allergies can include: avoiding allergens, medication options and immunotherapy (which can be given as a shot or a tablet placed under the tongue.

You may be thinking what I was when I read through my research, HOW ON EARTH DO I AVOID ALL ALLERGENS THAT IMPACT ME?!?!? That being said the AAFA says that the best way for a person with allergies to prevent allergy symptoms and decreased the required amount of medications is to AVOID your allergens as often as possible. They say that doing this can include removing the source of allergens from home and other places you spend large amounts of time. So if you are allergic to pet dander either remove said pet from the inside of the house or look for hypoallergenic types of animals. They also suggest routine nasal washings to help reduce symptoms brought on by airborne allergens. This can be done by doing a nasal saline rinse using a squeeze bottle or Neti Pot. (Side note if you are going to do nasal rinses you should always use only bottled water or boiled tap water. Never tap water that hasn’t been boiled)

If the avoidance technique does not work for you, there are medications available. Not everyone is okay with taking anything for allergies, simply because they don’t think it’s a big deal. However, not treating your allergies can turn into much bigger and more painful issues like sinus & ear infections. Below you will find a list of classes if medication that can be taken to help with allergy symptoms.

  • Nasal Corticosteroids, aka nose spray- Work by reducing swelling which can cause a stuffy, runny, itchy nose. This option is the most effective for those suffering from nasal allergies.
  • Antihistamines- Do just what the name says. They block histamine which is a trigger for allergic swelling. This type of meds may reduce sneezing, itchy runny noses and hives. These meds come in a variety of forms, and often time can be found over the counter as pills, liquids, melting tabs, creams or nose spray.
  • Mast cell stabilizers – This classification of meds work by keeping your body from releasing histamine (that is a cause of allergies). By blocking the production it helps with itchy, watery eyes, or an itchy, runny nose! This group is available as eye drops or nose sprays.
  • Decongestants – This group of meds works by reducing stuffiness by shrinking swollen membranes in the nose. One has to be cautious with these meds. As they can, if used more than prescribed, cause the stuffiness and swelling in the nose to worsen.
  • Corticosteroid creams &/or ointments – These products relieves itchiness and can prevent rashes from spreading.
  • Oral Corticosteroids- This type of medication has to be prescribed and may be used to reduce swelling and stop severe allergic reactions. These medications do have well known side effects so be sure to talk to your doctor or your pharmacist.
  • Epinephrine – This comes as pre-measured and also self injectable devices. This is the most important medicine to give during a severe allergic reactions (aka anaphylaxis). For this medicine to work properly it must be given/taken within minutes of the first sight of a serious allergic reaction. If you know you have a severe allergy to food, any kind of stinging insect, latex or medications, you need to make sure you always carry EPI pen with you. And that friends/family know how to use it if you are unable to.

Another method of treatment for allergies is Immunotherapy. Currently there are two types of immunotherapy that can be used to treat allergies. They are allergy shots and sublingual immunotherapy (SLIT)

  • Allergy Shots- This method of treatment involves giving injections of allergens in increasing doses over a long period of time. By doing this the person receiving the shots progressively becomes less sensitive to the allergens given in the shot! Allergy shots work best for those who have allergies to pollen, pets, dust, bees and other stinging insects and asthma. However, those who have allergies to food, feathers, hives or eczema will not likely to respond well to shots.
  • SLIT – This is another method for treating certain allergies without injections. When using this modality for treatment, an allergist will give patients small doses of an allergen under the tongue. Over time the exposure will improve tolerance to the the allergens thus reducing symptoms. This method overall is fairly safe and effective for treating nasal allergies and asthma. Currently SLIT is only available for the treatment of dust mites, grass and ragweed!

I don’t know about you but I am feeling a little overloaded at the moment. I have provided you with lots of information on allergies. I hope that my research has provided you with more information about allergies, treatment and diagnosis. I know I learned a lot. I must include this disclaimer, the information provided in this article is just for self education and gaining knowledge about allergies. That being said you should never start a new treatment method without first speaking with your doctor or getting a referral to an allergist. It is a fair assessment that many people will suffer from some kind of allergy during their lifetime. However, like most medical conditions everyone’s journey with their allergies will be different. And what treatment works for you may not work for Your kids. While doing research for this article I came across The American College of Allergies, Asthma and Immunology. They have a fabulous website that provides so much great information and is easy to understand. Click the link above if you want to learn more.

If you have any questions or comments on this post feel free to share them in the comment section below. And feel free to share with anyone who might benefit.

With Love,

Amber

How I Really Feel About…….. Pain

Pain….. is something I deal with daily. And I am guessing that many of you do as well! It has just become a part of our daily lives and something many of us don’t give a second thought to. And most of us would give anything to have one pain free day where nothing hurt at all without having to take a pill to get that way. That being said it has become a BATTLE for some to actually get the medicine that they need to treat said pain. Thanks to all those who are abusing pain medicine it makes those of us who actually battle chronic pain to also be viewed as an addict to some care providers. It is so sad that people who have chronic pain and live in pain everyday have to jump through such hoops just to get the medicine that we need to be able to function.

I usually try to stay away from the highly debated issues like this, but I read something that really struck a chord with me this weekend. A fellow Lupie posted that she got to the point where she could no longer handle her pain at home with all the alternative options, and ibuprofen she has at home. So she went to the ER, simply because she didn’t know what else to do. And of course because her primary complaint was pain, she was looked at by some of the care providers that she was simply drug seeking. And I know she is not alone in this I know this happens all the time. It has happened to me when I went in to the ER with a Hemiplegic migraine, there was no test to show that I was truly in pain so its easy to assume that I really just want pain medications. I even had one doctor tell me that I was just a hypochondriac and that there was no reason for me to be seeking treatment in HIS ER.

That’s the whole problem with autoimmune conditions and chronic pain syndrome, there is not always a blood test or imaging that will show that the patient is truly hurting. Most doctors don’t understand autoimmune conditions therefore they don’t understand why we are in pain. If they can’t see a lab result change or something on an MRI or CT Scan to explain the pain they just don’t get it.  And it frustrates me to no end that I can’t be honest about my pain with some of my doctors without them looking at me and thinking I just want the drugs. When in all reality I just want a day where I can wake up and function like a normal person. I don’t like how the pain medications make me feel but if that is what I have to do to function then so be it. I think many of you would agree with me when I say I just want a day without pain. I would give almost anything to have a day, a week, a whole seven days where I didn’t hurt somewhere and I could do all the things that I want to do without having to spend the next day(s) in bed.

The government at the local, state and federal levels are trying to do what they can to change how pain medications are prescribed and filled to decrease the level of abuse. In some states you are only allowed a seven day prescription no matter what the reason for needing pain medication is. In other places you have to give a urine sample every thirty days before you can get a new script to show that you are really taking the medicine and not selling it. Pharmacies are now being linked in many states throughout their local areas to try to prevent those abusing drugs from doctor hopping and having multiple scripts from multiple different doctors. While all of this is positive and will hopefully start to decrease the abuse of pain killers. It has actually made it harder for those of us who really need it to function. We are being made to jump through more hoops then ever before.

The real question I guess is how do we change the views of these care providers, especially ER providers. Where they see a large amount of drug seekers everyday. What can we do to prove to them that we aren’t wanting more and more medications, that we just want help getting through this flare up. Even with our conditions in our charts that say LUPUS, MIGRAINES, ENDOMETRIOSIS or whatever conditions you have that cause pain, they still often times wonder. I have thought about this a lot and have come to the conclusion that we will never change the way they look at us. We just have to have tough skin and prove to them that we don’t want an extra script or something new to take at home, we just needs something to break the cycle we are in. Maybe one day more doctors and care providers will start to understand the conditions that cause chronic pain. Until then we are stuck in this horrible rut and just have to prove our self to each new provider, and show them who we are and what we stand for.

With Love,

Amber

Tips on Treatments for Migraines.

I by no means am an Expert on Migraines. But I do feel that I know quite a bit about treatment options for migraines as I have tried just about EVERY treatment known to man to get rid of mine. So today I will talk about possible treatment modalities for migraines, oddly enough while suffering from one of the worst migraines I have had in the last few weeks. But our world goes on right? From having so many I have learned that our world just can simply stop just due to a migraine. Do I do all I can to slow my world down during one? YES!!! We all have to do what works best for us to keep our world going. The things I am going to talk about are things that have been recommended to me by Medical PROFESSIONALS, and any thing I discuss should not be started into your regimen without the approval of your medical provider. This may be a little long but I get asked several times a week about what I do to treat my headaches and all of this has been or is currently part of my headache journey.

  1. Pain relievers like Aspirin or ibuprofen (Advil, Motrin IB, others) could potentially help relieve mild migraines. Tylenol can also work to help the mild migraines in some people, especially in the population of people who are on Blood Thinners and can not take medications like Aspirin or Advil.
    There are medications on the marketed that are specifically for migraines, such as the combination of acetaminophen, aspirin and caffeine which is known as Excedrin Migraine, these could potentially ease moderate migraine pain. However, none of the over the counter meds will be effective on their own for a severe migraine. And with many of the over the counter meds like Aspirin, Advil, Ibuprofen if they are taken too often or for too long at one time it is possible for them to lead to bigger problems such as stomach ulcers, GI bleeds and even Medication overuse headaches.
    There is a prescription pain reliever called indomethacin that may help diminished the effects of a migraine and is available in suppository form (not fun I know!!!), which may be helpful if you’re nauseated. Narcotic pain medications are rarely ever used in migraine treatment simply because many Providers feel like narcotics will cause rebound headaches in the long run and cause more problems than good, which is controversial to many, So I won’t go into it any further at this point
  2. If over the counter meds don’t work for you migraine than the next step is usually a medication group call The Triptans, which often used in treating migraines. Triptans make blood vessels constrict and block pain pathways in the brain. You have probably heard of them, they are medications like Imitrex, Zomig, Relpax. Triptans effectively relieve the pain and other symptoms that are associated with migraines. They are available in pill, nasal spray and injection form. The fact that they offer different forms is helpful due to the fact that if you are vomiting it is hard to keep down a pill for said migraine.
  3. If the Triptan class of drugs do not work to control your headaches and you are having to take them more than a couple times a week it is time to call your Provider again. At this point they may talk to you about how often your headaches are happening and if you have been able to pinpoint a cause. If no cause has been noted they mas discuss with you about doing some imaging like CT SCAN or MRI just as a precaution to rule out anything further that could be causing your migraines.
  4. If you have vomiting with your migraines, first let me say how very very sorry I am! I have terrible nausea and vomiting with mine. And thankfully my Providers have been nice enough to prescribe me anti-nausea meds to help when or should I need it, so don’t be afraid to ask!!
  5. Another kind of medication that your Provider may discuss putting you on if the Triptans and Over the counter meds like Aleve are not helping with the migraine is what they call Preventatives. These are medications that you take daily to help prevent your headaches from getting to the point of a migraine. However, there are requirements one must meet in order to be considered for a preventative med, which I will list below. Taking preventative medications can help to reduce the frequency, severity and length of a migraine and couple potentially increase the effectiveness of other meds used to relieve symptoms during attacks.  These medications will not take effect overnight it can take several weeks to see results. It could be recommended that you take preventative meds daily or just around your triggers. For instance if you get migraines around menstruation you might take the medication just around that time of the month for you,. Eventually if you have good results on the preventative meds your doctor may discuss tapering you off the medications to see how your headaches do without the medications.  The most common classifications of medications used as Preventative meds are Cardiovascular (heart) Medications, Antidepressants and Seizure medications. The qualifications I mentioned above are:
    1. You have four or more debilitating attacks a month.
    2. If attacks last more that 12 hours.
    3. If pain-relieving medications are not helping.
    4. If your migraine signs and symptoms include a prolonged aura or numbness and Weakness
  6. The last prescription medication I will discuss is Botox. I know you are thinking, “Wait, isn’t that the stuff that people put in their faces so they can’t move them and get no more wrinkles? Yup, same stuff! Just works a little different. I have yet to find an exact explanataion as to why it works but it does. There are some terms that have to be met before you can sign up for Botox. Here is what the Botox website says “BOTOX® is a prescription medicine that is injected to prevent headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years or older.
    It is not known whether BOTOX® is safe or effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).
    BOTOX® prevents on average 8 to 9 headache days and migraine/probable migraine days a month (vs 6 to 7 with placebo) after 2 treatments (at 24 weeks).”Botox website
  7. Some over the counter supplements that are often encouraged for migraine sufferers are Fever Few, Magnesium and B12, B6 and Folic Acid. Fever Few which is known as a herb used to control the pain of migrain. While Magnesium is used in hopes of preventing migraines. Some research has shown magnesium levels in the brain if often low during migraine attacks. And because magnesium is needed for a persons nerves to function properly, some think that low magnesium and migraines are somehow related. Vitamins B6, B12, and folic acid have been found that they  may reduce the frequency, severity and disability of migraines, according to new research. Daily vitamin supplements were found to produce a two-fold reduction in migraine disability.
  8. Invest in GOOD DARK SUNGLASSES- This may sound silly but you can never had dark enough sun glasses when you have migraines so invest in a good pair that is super dark and will really shield your eyes. There are multiple places to buy these but there are four good pairs on Amazon ranging in price from $49.99- $99.99, and are available as indoor and outdoor lenses!!!
  9. Another item that you can’t go wrong with and would be a great Christmas gift would be a good EYE MASK!!  These like anything vary in thickness and size and in bandwidth. You can find them at many different locations from the pharmacy to Amazon to Bed, Bath and Beyond,. The one below Is one that I recently purchased from Amazed that is desidned for those of us with migraines and has the ability to be frozen. And was only $10.
  10. If I had to pick one non-pharmacological item that has helped me the most it would be my ICEKAP!!! It is exactly what it sounds like. I hat with ice. But the ice packs are spaced properly so you don’t have to try and keep one on the front of your head and the back and keep them from sliding, It has really been a game changer. The Icekap website And last but not least Peppermint Oil. I am not big into oils but this is one things that I can carry in my purse and use anywhere when I feel a migraine coming on. And it also works for nausea. So killing two birds with one stone so to speaks with one oil. Unlike many of the other things that I have talked about. The more well known companies are the best to buy for like Young Loving because you know that their oils are 100% pure.

I hope that you find this list helpful and maybe I was able to give you a tip or two that you had not tried before. If you have any questions or comments or suggestions please don’t hesitate to leave them below!!

With Love,

Amber

Epilepsy, The System Shocker

What is the first thing you think of when you hear the word “Epilepsy?” What about “Seizure?” Normally, people think of someone on the floor convulsing. What they do not realize is that there are over 40 different types of seizures; some of these you will never know the person is having that seizure unless you know exactly what to look for. Unfortunately, that person will know and feel the after affects for sometimes and hour or days to come even with medicine.

Simply put, a seizure is a disruption in the brains electrical activity. Think of the electrical current being sent to a lightbulb, when that lightbulb flickers or goes out for a few seconds, that is a seizure. Epilepsy, is a recurring disruption of the electrical currents between various lobes.

Roughly 65 Million people globally have Epilepsy with 3.4 Million of those being Americans. There are approximately 150,000 new cases diagnosed in the United States each year. What is perhaps the most disheartening, is that 1/3 of all of those with Epilepsy, do not have a controlled case because there is not a current therapy that is effective for them. That is 21.45 Million people that live with uncontrolled seizures. Common triggers for seizures include lack of sleep, hormone changes, flashing lights, stress, particular foods, certain medications, alcohol or drug use, missed doses of medication, and low blood sugar.

Living with epilepsy is not easy. There is always a sense that you are walking on a glass bridge that has a thousand cracks, and a ravine of jagged rocks is there waiting to catch you. When my seizures returned, there was a new level of violence to them that I had not experienced. Previously, I had polite petit mal seizures. I just stared into space for a few seconds. This time, I would convulse for thirty minutes, as EMT’s and Doctor’s would struggle to get the lifesaving medicine into me. I would then wake up and be exhausted, have no concept of hours or days before having lost memory, and then the bruises from the actual seizure itself. I have never been beaten by another human being; however, when the police ask you if the domestic violence officer needs to come to you home, and your only choice is to show the very worried officer your hospital discharge papers you start to realize just how strange this new world is.

There is a fear of how people see you. You get nervous going out because unless you are with a “safe” person, what if something happens and your friend does not know how to handle the situation? Epilepsy is yes a physical disease; however, it is also a psychological warrior in that you have to plan for it.

When newly diagnosed with epilepsy, the looks of fear, anxiety, helplessness, what do I do if, did she do something to deserve this, is she demon possessed (yes in 2017 that is still asked), I will just stay over here because it is better not to get to close, and a thousand other glimmers that float across people’s face become a burden and a stress to bare. As the patient, you already struggle with understanding how your own life is changing. First, you are trying to understand what your own body just did to you. Second, you have the emotional fallout and instability. You actually go through the 5 stages of grief. Third, you then try and understand your seizures, triggers, if you have a tell or aura, you keep that log and try and find anything or everything that helps. Fourth and finally, you begin to step out into the world and realize that no matter what somehow you will overcome this.

The medication cocktail search may be easy or it may be hard, the sense of humor that will develop will be disturbing to those on the outside, I mean hey how many people get to have a lightning storm in the brain?

Sources:
Epilepsy Foundation of America
https://www.epilepsy.com/learn/about-epilepsy-basics

Pain Medication…. The Debate

Ma’am I see you have scheduled pain medicine on your list of meds……… Yes, I take them for my PAIN….. What do you need pain medicine for????  Well, let’s see. Could it be the Systemic Lupus? Or Maybe the Endometriosis? Or could it be the interstitial cystitis? Or maybe the chronic migraines or fibromyalgia?????? 

For some pain medicine is the only way that they can make it through the day. Maybe even the only way they can get out of bed!!!  For others it’s just something they can take a couple times a week and be good. Why is it that those of us with documented conditions that are known to cause pain are still looked at like drug seekers? 
Have you ever been on the receiving end of questions about the medication you take that just gets you through the day? Do you ever feel like you are treated like a druggie or a criminal because you need prescription pain meds? 

There is nothing more frustrating to me then being looked at like I’m a drug seeker when I go in to the dr or pharmacy because I take pain medication. And heaven forbid I ever go into the ER because if a hemiplegic migraine or a horrible lupus flair, and need some relief. When that happens it’s almost for sure someone will look at me like I’m drug seeking. This shouldn’t be!!! All the people out there who have abused the system and abuse prescription pain medication have ruined it for all the rest of us. 

We shouldn’t be grouped into that category. Especially when we have multiple document conditions that can cause life altering pain. But we are. I see almost daily that there are lawmakers trying to pass a law that should prevent the abuse of narcotic pain meds. But if that happens will we stop getting the looks? Or will providers stop making us feel like we can’t seek medical treatment for fear of being treated like a drug seeker?? In my opinion no!!  It’s always going to be a problem for us. No matter what laws are passed and how much thy try to cut down on the abuse of prescription drugs I feel like we are always going to be treated poorly. It’s always an assumption that just because we take the meds we are a druggie. 

I’m not saying every doctor or nurse or pharmacy treats people like that. But I guarantee that at least 5 or more of the people who are reading this could tell us a story about how they were treated or not treated because of the medication listed on their home Med list!

How do we stop this unfair treatment? How do we stop feeling like everyone assumes the worst of us?  I wish I knew. But we need to find a way. Find a way to prove to the world that just because you take pain meds you are a seeker or a druggie. Prove to the world that these conditions that we suffer from everyday cause such pain that we need those meds. Prove to people that sometimes without those meds we wouldn’t be able to get out of bed. Or complete our daily activities. And sometimes even WITH the meds we can not complete any of our daily routines. Do we carry a sign that has a list of our conditions? Sadly, that wouldn’t help. Because if you haven’t experienced the pain of these conditions yourself you can never fully understand. 

How do we prove to the world that just because there are those scummy people who buy meds for abuse or steal meds to abuse them, that we aren’t all that way? Sadly, in this day an age there is such a high rate of abuse of prescription meds that I don’t know that we will ever be able to prove our case. According to the American Society of Addiction Medicine, Of the 20.5 million Americans 12 or older that had a substance use disorder in 2015, 2
million had a substance use disorder involving prescription pain relievers. And In 2012, 259 million prescriptions were written for opioids, which is more than enough to
give every American adult their own bottle of pills!!! 

I don’t know about you but to me that data is staggering. And the fact that Drug overdose is the leading cause of accidental death in the US, with 52,404 lethal drug overdoses in 2015. Opioid addiction is driving this epidemic, with 20,101 overdose deaths related to prescription pain relievers is beyond understanding.  I completely underatand why law makers and medical providers want to find a way to cut down on the number of people taking prescription narcotics. But what they don’t seem to understand is that there is a large population with chronic pain issues who truly require these meds. 

According to the American Academy of Pain Medicine; pain is a significant public health problem that costs society at least $560-$635 billion annually, an amount equal to about $2,000.00 for everyone living in the U.S. This includes the total incremental cost of health care due to pain from ranging between $261 to $300 billion and $297-$336 billion due to lost productivity (based on days of work missed, hours of work lost, and lower wages).  These numbers are crazy to me. Do all these people really need pain medication or are some of them abusing it? Probably a little of both.  

 Chronic Pain is a real thing and needs to be dealt with. And those who really need the meds should be able to get them without feeling like they are being looked upon negatively.  I hope and pray that there is a way for this to be done. But at this point I don’t know how to go about it!  (Okay rant over!)

If you would like to share your story about how you have been treated negatively because you take prescription meds or have requested meds because of you condition. Please place those stories in the comments or email me. I would love to read them and compose another blog post with everyone’s story. 

-Amber 
Resources:

http://www.asam.org/docs/default-source/advocacy/opioid-addiction-disease-facts-figures.pdf

http://www.painmed.org/patientcenter/facts_on_pain.aspx

A Day in the Life Getting Benlysta 

My Experience 

Yesterday, I finally got my Benlysta infusion. I was 4 weeks late due to surgery, illness and then change in insurance. That was a LONG four weeks. I could really tell I was late. I’ve been hurting more and so dang tired. But then the days following are pretty miserable. However, I’ll take those two yucky days to get three good weeks. I am so grateful that I qualify for this medication and that it helps me!  Everything else I’ve ever tried has given me very little help. So I’m hoping that being back on this, after being off for a year, that I will see the great results I did for the two years I did previously!!! 

So for the two days after the infusion I keep my nausea and pain  medication close. And plan on not leaving the bed. It wipes me out totally and all I want to do is sleep. I know I should be up and doing something but I just don’t have the energy.  It’s much like getting Chemo. So I must just rest for a couple of days and let your body heal!!

What is Benlysta?!?

For those of you that don’t know about belysta it’s a monoclonal antibody. It acts by attacking our immune systems and wiping them out. This is essential because with Lupus our immune system is fighting our body. So by wiping it out it can no longer attack our body thus decreasing our symptoms (in theory!)  

How is Benlysta Given?!? Whats the Procesure?  How Long Will It Take?

Benlysta is give only intravenously. And takes at least one hour. Although the slower you run it the less likely you are to have any kind of reactions (Itchy, nausea, headaches). Mine is run at a minimum of 1.5 hours.  Most people will also get pre- medications of Tylenol and Benadryl to also try to prevent those reactions. However, overall reaction rates are low.  Most places have you go into a hospital based infusion center. These could be in the hospital, in the rheumatology office or even in the cancer centers. When you get there they will go over your chart with you and do vital signs. Get your iv started or port accesses and get your pre meds given then start your infusion. Then you can read a book, watch tv, or take a nap, whatever you chose to pass the hour to two hours that you will be there while the medication infuses. Once it’s done you will have your IV removed and be on your way. 

How Do You Feel After the Infusion?

Generally after the infusion for a couple days you will feel pretty run down and “yucky,” yes that’s a medical word. You may be achey and nauseated and very tired. All that is normal. Normally after a couple days you start feeling pretty good. For me, when I have my infusion on a Friday I usually sleep all weekend and then feel better and have more energy on Monday. And will feel good for about three weeks, until the week leading up to the infusion when I start feeling more run down and more achey again. So, overall I get usually get about three good weeks a month from each infusion. Which for me is fabulous!! 

You don’t know what a Benlysta is? Or have more questions? 

I will attach a link below to the benlysta website below for anyone who is interested. 

http://www.benlysta.com/