Sadly over the last few years I have spent many nights in the hospital. I even took a week long trip to Mayo Clinic In Minnesota, and have had a couple overnight trips for treatment. Thankfully, it’s been awhile and I hope I don’t jinx myself by sharing all of this. That being said I was cleaning out my bag and thought I would share.Read More
Looking back and thinking about when my health journey began and it's honestly hard to remember. As long as I can remember I was always "that kid" who was sick & I never had perfect attendance due to illness. When did my health get really bad?!? Sometime during high school. I remember when I was fourteen I started having intense abdominal pain that no one could ever diagnose other than to say it was for sure not my appendix. Then in 2001 (my junior year) I got sick and was diagnosed Mono and it seemed like it was everlasting. It stuck around forever. Over six months in fact. Once I was diagnosed with Lupus the doctor said that the long lasting Mono was most likely my first lupus flare. From 2001 let's fast forward to 2011. Yes, that's a big jump. But there was nothing big that happened health wise during that time. It was just more of the same. I was always sick and I continued to have the abdominal pain that no one could diagnose. Finally in the fall of 2011 I plead my case to my OBGYN and she agreed that it was time to go in and do a laparoscopic surgery to see if I had endometriosis and excise it all if I did Indeed have endometriosis. Well, the surgery showed that I did have endometriosis and she was able to take care of everything at the time of the surgery. So that helped immensely with the issue of the abdominal pain.
Now we will jump ahead a little further to Feb 2012 when everything went down hill. I was admitted to the hospital in February that year for a week for a respiratory infection that no doctor was actually able to diagnose or effectively treat. I ended up going home on HIGH doses of prednisone and had to take an entire Month off of work because no matter what I did, I couldn't breath. At this time along with the breathing issues I also started having PAIN. Widespread pain. Pain like I have never experienced before. Pain that no one had an explanation for. So I couldn't do much activity because I couldn't breath, and everything hurt, and I was SO tired. This wasn't run of the mill fatigue this was life changing fatigue. But no one seemed to me concerned. Sadly due to all those things combined I had to change my job at work and leave my charge nurse job on the post surgical heart and lung floor where I had been for 5 years since graduation. I had to quit a job, that I had not even started, that I was so so excited about. I had just been hired to teach clinical for a local nursing program, which had always been a dream of mine. And I had to drop out of the Masters of Nursing in Education Program that I was 8 weeks into. Because of my health.
Looking back I can that my hospitalization in Feb of 2013 was just the beginning of the decline in my health. That July, I was diagnosed with Systemic Lupus among other things. Though troubling and scary, it explained so much. It explained why I had been feeling the way I had and the symptoms I had that no one could ever figure out. Along with all the issues I had experienced over many previous years that didn't seem big at the time but now all added up and made total sense. In the months and years following my Lupus diagnosis I have been diagnosed with so many other life altering conditions that made it hard to see any kind of future for myself. Just to name a few, I was diagnosed with Fibromyalgia, Endometriosis, Interstitial Cystitis and other chronic illnesses. Not to mention the migraines that years later morphed into hemiplegic migraines. And like i said above, after the Lupus diagnosis it became clear that I wasn't going to be able physically to continue working as a nurse on the floor. I not only had to leave my job, I had to step down from my teaching position with the nursing program before I even started. And I had to drop out of the masters program that I had only just begun. To say the least I was crushed. I just couldn’t understand why God would allow these things to happen and what I had done to deserve so many trials.
At that time I honestly had a really hard time seeing past the actual diagnosis. I couldn't understand why God would take away my ability to do the things I had always dreamed about. My job, furthering my education and the ability to have children. I mentioned earlier that I was diagnosed with endometriosis and sadly between the endometriosis and the lupus I will likely never be able to carry my own child. It would never be safe. That has probably been the hardest change for me to accept. I have dreamed, like many other ladies, about having my own babies since I was a kid myself. I had names picked out in my head and everything. And before anyone says anything, yes, I know there is adoption and other routes which I may look into at some point. But I have come to accept that the dream of actually carrying my own child will likely never happen.
In the months (and honestly even years) following my Lupus diagnosis I struggled. I struggled in pretty much every sense of the word. I struggled to find my place in my workplace. I also struggled to find my place in my relationships (family, friends, romantic) as I felt like nothing was the same even when others didn't see it that way. Sadly, I lost friends and relationships that I thought would be lifelong all because of my health. These conditions are something I am going to be dealing with forever and can't just walk away from and have had hard time accepting. And those people did the one thing I wished so much that I could do. They threw up there hands and walked away.
Probably around 9 months in I began to realize that something had to give. Something had to change. I couldn't continue going at things the way I was because something had to give. So I searched for a place I could go for support. Someplace I could go and talk to others who were living through the same issues that I was. A place where I could go and openly express my feelings without being judged, a place where I could find information on the issues I was dealing with. I looked for local resources and online resources, but I couldn't find a place where I really felt comfortable. After spending time searching, it became clear to me that I was supposed to create the place I had spent so much time looking for.
After I realized that I was supposed to create this place of solace and education that I had been looking for. After I finally came to the realization, I spent a lot of time researching support groups & educational groups. I wanted to find out what made these groups successful, and what made them flourish. So I did just that. I recruited a few of my fellow Lupies (aka someone with Lupus) -and friends to help me and we created a Lupus & Chronic Illness Support Group on Facebook. A group we call "Lupie Groupies." We created a group where those dealing with chronic issues could go and be real and totally honest. A place where judging others for their thoughts and feelings is NOT allowed. A place for those who were newly diagnosed, as well as for those who have been diagnosed for decades and everyone in between. A place to find education on their conditions and as well as information on treatments.
At first we were a very small group of like 75 people, but over the last 4+ years we have grown to over 600 members. When I started this journey I would have never dreamed that I could develop a support group that would grow to be so big! I have received such amazing feedback over the last four years from people in this group. People telling me that the group has given them hope, and that they have made life long friends in the group.
The last two years have been incredibly trying as I had a seizure, totaled my car, lost my job and had to move back in with my parents. This was never where I thought my life would be but it is what it is. I've had my highs and very very many lows. But I feel so lucky enough to have this amazing blog as a source of outreach. I love that I have this platform to spread awareness and use it as an outlet for my feelings. Some people aren't lucky enough to have one calling in life. But I feel so lucky that I got 2. The first was nursing and the second was my support group and my blog!
I know that makes no sense at all. But the last six years since my diagnosis hasn't been all bad. I have found my tribe, those people in life that you know were meant to be there and will be there forever. And most of them, not all but most, are fellow spoonies. Because as much as I hate to admit it, friendship with a fellow Spoonie is just easier sometimes. Not only can I say that I am lucky enough to have found my tribe but I feel like I have been blessed with a second calling. I don't feel like everyone is lucky enough to get one and somehow I got two. Well, maybe 1.5. I feel like I was supposed to get these conditions so I could use my medical background to teach, spread awareness and provide support to others in similar situations. And I love it!!! Do I wish I could make a little more income from it?!? Ya!!! But maybe someday!! Right now I just feel so blessed that I am able to take my horrible health and turn it into a positive. If someone would have told me this is where I would end up I would have laughed. But honestly I am pretty content. Do I miss work? Yes, yes, a million times yes! But I truly feel like I have found my calling! I was put where I am to be a resource, a friend, a blogger, a leader to those who are in similar places. I was put where I am for a reason and I have had to adjust to that and learn to live in that place.
Dear Lupus, Back in 2012 I was happy and just going about my life and was actually very excited about where my life was taking me....
But you couldn't leave it that way. You just had to make yourself known. You came into my life like a hurricane. You set me down a path that I had no say in and was not really ready to face. No one asked you to leave that dormant state you had been living. And you certainly weren't given an invitation to become the center of my life. However, you did just that and in the process changed just about everything I knew and was comfortable with. You came in and made it known by all that you were GOING TO BE THE CENTER OF ATTENTION. Who asked you to come? Who asked you to come into my body and take my life away?? I sure as hell didn’t.
Looking back, I can see that you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you by your proper name. Instead they kept telling me that I had a bad case of mono. Mono that lasted SIX MONTHS?!?! Really?!?? Being a teenager I always wondered why the simplest tasks made me exhausted and how the people around me could go-go-go for hours, when I couldn't. It was because of you LUPUS.
You went away for several years for the most part and I was grateful. Even so, I continued to wonder through the rest of high school and college why I couldn’t be as active and involved like the kids my age etc. it was bc of you. Damn you for taking away my years when I should have been having fun!
Finally six years ago you officially made your move. You moved in for good, and brought all your baggage. Although we never discussed this, and I never agreed to this. I didn’t give you a key or clear out a drawer for you. Instead you just made yourself welcome. Since that day that seems so long ago you've made my life or a good part of it a living hell. Because of you I have lost friends because they think I don’t want to see them or that I’m just full of excuses as to why I don’t want to go out to the bar after work. Or because they simply don’t understand when I say I’m tired it’s not just lay down and take a nap tired it’s pure exhaustion. Because of you I had to walk away from my nursing career after only 11 years. I planned on working in the medical community until I retired. But you once again had another plan. And your plan won, even though I didn't agree. But the biggest problem I have with you isn't related to losing my career, or friends. My biggest issue is how hard you've made it for me to be able to watch my sister play ball. She is one of my very favorite humans in life. And watching her pitch is one of my all time favorite things to do. But because of you I was virtually unable to do the last couple of years. Mainly due to the intense heat intolerance I developed due to Lupus. And the other issues that the heat causes for me, like headaches. And it literally has broken my heart. This summer was the last ball season of her career and I only got to see her once. I know she understands but it still hurt me so much.
You came and brought along uncontrolled pain (at times), long term steroids (leading to weight gain), inability to be in the heat or sun, sleep issues, and a plethora of other very undesirable conditions that go hand in hand with you. I can never thank you enough for your generosity. You brought all your friends (other medical conditions) along with you when you moved in. I didn't want you and I definitely didn't want any of them!!!
I have decided I am done, you have been "kind" enough. But now it's is time to go away and take all the “gifts” you’ve brought with you that are also not welcomed here.
One of the reasons I hate you the most is because between you and your "friend" endometriosis I will no longer be able to carry my own baby. And I've never wanted anything more than to be a mother. But because of you, the side effects of the drugs I take to treat you and your friend endometriosis, carrying my own baby is no longer possible. My lifelong goal gone in a second. I have always wanted to adopt so I know that's still an option. But it's still not quite the same as having your own baby. But I will be greatly appreciative of any child that God gives me.
When you leave you can also take the Adrenal Insufficiency and Hemiplegic migraines with you. Because of the three of you I had to quit my job and move home with my parents. Because you were all being so mean. At times of big flares, illness or hospital admission my blood pressure can drop and stay in the 70's and 80's. Also because of you I have spent more time in the ER/Hospital in the last FEW YEARS than one person ever should IN A LIFETIME.
I'm tired of all of you. Tired of all the medications, the depression, the anxiety and most of all the pain. I never asked any one of you into my life, yet you are all here. You have changed my life in more ways than I can count. I've lost the majority of my local friends, I can no longer work on gaining a degree to teach nursing school because of you. You have even made it very very hard for me to hold down a job. You need to pack up and get the hell out of my life! GO. GO I tell ya!!
One thing that keeps me going is mysister's unwavering faith in God. And her prayers. Because of her I have been able to find my relationship with the Heavenly Father again. Because of that I now live by the verses.
Philippines 4:13 I can do ALL things through Christ who strengthens me.
Isaiah 41:10 So do not fear I am with you; do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.
Co-written by Amy Nora Chronic Pain... is just that. It’s chronic, meaning it’s something we live with ALL the time. It is not the same as stubbing a toe or knocking your knee on the corner of the table. There is no cursing or exclamation of words and a few minutes later life is perfectly normal and you are moving on. Nor is it like breaking a bone, wearing a cast and being done with the pain and annoyance 6 months later. Chronic pain forces you to live differently. Life becomes methodical, more deliberate in the actions we take, and how we live our lives. This includes the simple things like getting out of bed, going out with friends, cleaning, or trying to cook a meal. You live you life in pain; therefore, you come to accept various levels of pain as normal. This does not mean that you would constantly rate your pain a 10/10, you may rate your pain as a 2/10. However, you had to stand and make a sandwich so now that has spiked to a 7/10. This is a fight fought daily by millions of Americans with degenerative diseases or chronic medical conditions.
I wanted to give you all a look into a day in life of living with chronic pain. But I decided to go about it a little differently. My friend and frequent contributor Amy Nora and I will both be sharing our views of what like living with chronic pain is like. As living with chronic pain can look very different for different people.
I feel that there is so much negativity in news about pain and pain medication these days with all the issues with the changes in the rules and regulations with narcotic prescriptions. There are people killing themselves because they can no longer receive their meds. Others are being fired from their Pain Management Doctors because they don't take their pain meds frequently enough. We have all heard the stories. But I don't want to focus on THAT today. I want to bring light to what a real day of someone with chronic pain is like. I want to talk about what a day with multiple conditions that cause chronic pain can be like. I think many people have a stigma in their mind that people with chronic pain take their pain meds and may have some pain everyday, but most of their day is spent doing what they want with no big issues. Just so we are all on the same page here's a point of reference: besides taking pain medication I also use a combination of heat, hot showers, massage, muscle rub and yoga to treat my pain. I do suffer from multiple chronic illnesses that cause chronic pain, I live daily with Lupus, Fibromyalgia, Debilitating Migraines, Endometriosis, Interstitial Cystitis as well as undiagnosed chronic back, hip and sciatic pain.
For most people when the alarm goes off or they wake up, they probably start going through the day ahead in their mind. As far as what they have planned, what's scheduled, what they are making for dinner etc. For me and those with chronic pain the first thing I do when I wake up is lay in bed for about 15 minutes let my body wake up so I can assess my pain. I have to lay there for a little while to let my body connect to my brain so I can really take account of how I am feeling. I generally start at my head and work down. This morning for example, I started with my head, and the pain was like a 2/10. Continued down to my throat, neck and glands because I have been fighting a cold/sinus infection, that was like a 2/10. Then down to my shoulders, elbows and hands. Left elbow was a 4/10, still not sure what that was about, but it has been happening a lot lately. My hands, about a 4/10 as well. So I start doing some stretches to see if they are just stiff or if they are going to hurt all day. They seem to be stiff and the pain seems to ease with stretching, so that is a relief. Down to my belly, cramps are like a 6/10 as endometriosis causes MEGA cramps when its time for your cycle. My bladder is probably an 8/10, because I didn't wake up all night and it feels like it is ready to explode. My low back is a 6/10 as is my left hip, and for the first time this week I didn't wake up with any sciatic pain or pain in my left calf. Which has been very painful everyday this week. Overall, I would say my pain would be about a 6/10 this morning. So now that I have assessed the pain that I woke up with, now I have to decide what I want to do about. Do I go ahead and take something before getting out of bed, or do I wait and see how things go as the morning progresses? That is sadly the question I address each and every morning after I wake up.
Generally, my rule of thumb in the morning is that if my overall pain is over a 5/10, I go ahead and take something for the pain. I have learned that if I don't the day is NOT going to get better. And I will most likely not be able to get the things on my to-do list done. Or at least not until later in the day. So this morning that is exactly what I did, I took something for pain got out of bed and did my morning stretches that allow me to be able to move in the morning. Without those stretches, thanks to the fibromyalgia I would not be able to move first thing in the morning. I won't bore you with the exact play by play of my day. But at each step of the way I have to decide if I can complete this task or if I should wait and attempt it later. This morning after getting dressed and having breakfast, my first task on my to-do list was cleaning my bathroom, I knew I didn't feel like it but it can only be put off for so long. For most able-bodied people they could probably go in and get it done all in one fail swoop. For me however, it takes several steps. Due to my pain and fatigue, any multi-step project will almost always require several breaks. Just to clean my small bathroom this morning I had to stop and rest FOUR TIMES!!!! And it took me over FORTY FIVE MINUTES. Even with the breaks, I still had to lay down with my heating pad on my back and abdomen for about 30 minutes before I could go on to my next task.
I continued on with my day the same way as above. I vacuumed and then had to rest and use the heating pad. Then I did some laundry and had to rest. After eating lunch the pain has escalated again to about a 7/10 so I had to quit what I was doing and lay down. Completing simple tasks is no longer simple. It has to be well thought out and planned. That is generally how it goes for most people with chronic pain/chronic conditions. I can no longer just complete a task without resting or taking several breaks. Things that used to be simple and easy are no longer so easy. Everything that is done has to be well thought out.
I miss my time out with friends and family. But a night out or even time at home with friends or family for dinner and a movie requires major planning. Over the years I have learned that if I want to spend a day out of the house no matter what I am doing I better prepare. I need to make sure I rest all day the day before, and maybe two days before. And I know that I will most likely be in bed and doing nothing for several days after. For what seems like a normal day out of the house shopping or an evening out to dinner and a movie to an able bodied person is much different to someone with chronic pain. For example, last week, my little sister played in her last competitive softball tournament. And I just simply wasn't going to miss it. Sadly, I knew I was going to pay for it because I didn't feel good going in and it was 95 that day. (People with lupus simply do not do well in the sun.) So I planned ahead and took it easy the day before, and stayed in bed till the last possible minute the morning of, got dressed, and got in the car for the 45 minute trip. I was already hurting (at about an 7/10) by the time we got out of the car, and at that point we still had about 15 minutes to go before the 75 minute game would start. I had taken my pain medication before I had left the house but it wasn't doing much to relieve the pain. I made it through the game, a quick lunch after the game with the family and the 45 min drive home. After my shower, a COLD shower, I crashed. And I certainly paid for it the next couple of days. Everything you can imagine hurt, my back and hip from sitting, my head from the heat. And just about every joint you can name. I really was hardly able to get out of bed the next day because the pain was so severe. That being said I wouldn't have changed it for the world. I got to see my sister play one last time. I would have done it 100 times over just to be there especially knowing how happy it made her that I was there to see her play.
If my pain is tolerable and I actually get out of the house like I talked about above when I attended my sisters game. Usually as soon as I get out of the house I am counting down the time until I can get back home to my bed and my heating pad. Generally I can’t focus on whatever I am doing because my pain is such a point of focus. I do enjoy getting out of the house but I can’t help but think about how much I am going to pay for leaving the house. So sometimes we have to pay for the good things in life. It shouldn’t be that way but it just is. We shouldn’t have to deal with all we do, but we do and we learn how to deal with the hand we were given.
I had my first experience being treated as a drug seeker this week, which I will tell you about in just a second. But I first want to give you a little backstory. Only a few months ago my family moved to a new state leaving behind the doctors who had treated me for many years. Knowing there has been so many issues with pain and pain medication, on my first visit I brought all of my medical records with me. In the state I moved from, the doctor treating the source of your pain would be the one that prescribed your pain meds. I discovered that my new Rheumatologist does not write pain meds. I take a rather mild medication; however, he preferred that my PCP write for anything related to pain. I use a combination of physical therapies, yoga, tai chi, breathing exercises, rest, heat, massage, and tears to handle and tolerate pain. Meds were a last resort for me. In fact, this was a decision that was not taken lightly, and very seriously discussed with my previous doctor. When I went to my new PCP to get the medication, I was promptly given a long lecture on how doctors are monitored and restricted, and how they are not allowed to write too many of these prescriptions. They did not look at the scanned records that are in their system, they did not call my rheumatologist. I was lectured. I was informed that I had to go to a second doctor to get pain medication, because that practice encouraged doctor shopping. Something the medical system here should know and discourage; however, this was their policy so I was being forced into this practice not by my choice but by their policy. A prescription was finally sent to the pharmacy which I picked up the next day; only I discovered the prescription was for THREE DAYS of the medication. I do not take the max prescribed, I do the best I can because there are no therapies left on the market for us to try. We are at the end of the proverbial rope. Asking for help once in awhile should not result in being treated like someone with a contagion that will cause deadly harm. I feel like physicians are pushing patients into medical marijuana (legal in my state) and can see why patients feel forced to seek illegal options. When you deal with chronic pain, you learn quickly what things will exacerbate it, what things you do that will make you pay a little bit of a higher price, and things you can do to help here or there. I have Lupus, Rheumatoid Arthritis, Sjogren's Syndrome, debilitating Migraines, Epilepsy, and Fibro.
If I am lucky, I wake up and think that my eyes might open properly the first time. My dog is a service dog and has been trained to help gently wake me. Part of this is because of pain, but also if I am jarred awake it is a promise of a day with a horrible migraine. I begin taking stock of what is alive or asleep or wishing it were dead on my body. One thing with RA is morning stiffness, so often you don't allow you initial impression of the day define you. I roll out of bed and hope I don't actually fall. The first 15 minutes of the day moving is generally agony; an 8/10 because your muscles and joints have no idea if they even want to move. This does not include all of the other fun stuff like cognitive dysfunction (you can't think clearly) or your eyes don't actually focus (thank you Sjogren's). After 15 minutes, sometimes 30 minutes, you have an idea of where you are going to hurt the worst for the day and what you will be dealing with. Normally, I know that my knees, hips, and lower back will always be a 5/10 and that is just what it is. If I having a migraine, I automatically medicate for that, and if the rest of my joints are above of 6/10 I will take medication to help with that. This is when two things hit me simultaneously. My need for coffee or tea and also what will I be able to do today? Is it a stuck in bed day? Maybe I can do a couple things, but I will have to depend on my cane? Oh, it is a good day. I can walk around and get two or three things done and just rest in between and after.
I had one day recently when I got really ambitious. I wanted to get sheets, blankets, and clothes washed and dried in the same day. That morning my pain started at around a 5.5/10. My energy was pretty decent, I had a plan of action in place and life was good. You become a bit of a master planner with chronic pain and any chronic illness. I have learned that I can have the best plan, and it will go straight down the toilet. I started with the regular clothes. Just the act of getting them moved from the washer to the dryer, using my laundry aid, escalated pain to an 8 and delayed me getting to my next load for an hour because my legs and back gave out and I was unable to tolerate the simplest actions required to put a load of laundry in. Sadly, this was with pain medication on board. My goal was three loads of laundry for the day. To an able bodied person, that may seem like nothing, for me to complete that in one day would have made me feel like I had just climbed Mt. Kilimanjaro. When you have a chronic illness that no longer is how life happens.
For me, time with friends is one of the most beautiful and precious things. It also is the one thing you lose that people don't understand about you. When first diagnosed I thought that I could just power through, now I have learned the price I pay. Last week I went to the movies with my sister and niece. I wanted to see Mamma Mia 2, they did too quite frankly. It was girls night. I had to rest 2 days prior. The night I went I almost collapsed going into the theatre, and I did collapse coming out. I started the night fatigued and about a 5/10; before we left I had a slight moment where I wanted to sit down and sleep for a month but I was not missing. By the time I got home I was about a 9/10. I have been flaring, which in our world means additional pain, swollen and stiff joints, and fatigue since. I would not trade that fun night though. There is a price you pay for all of your time. I know with this post, I am not asking for sympathy. But before you make a judgement, pause and maybe try and step into another's shoes for just a moment.
Even our families and closest friends don’t always understand. Chronic pain is hard for anyone to understand because it can’t be seen. When you look at us we don’t look any different from the next women. Unless you you see us limping, walking with a cane or rubbing a sore spot you wouldn’t know we were hurting. They try to understand, and at first they do really well. But even the closest of friends or family start to get frustrated after repeated cancellations. They think back to the time they sprained their ankle or tweaked their knee, and the pain was gone in a couple weeks and they don’t understand why “a little pain makes life so hard!”
What Amy and I shared above is simply a small glimpse into the life of someone who has chronic pain. Someone who has to carefully plan each and every task they do on a daily basis. No on will never be able to explain to what it feels like to feel like your body is no longer your own. Your head and heart want to do one thing but your body says NO. No one will ever be able to explain to you how hard it is when you have to turn down your best friend for the 9th time, simply because the pain is to unbearable. No one can ever explain what it feels like to be told by the people who you are closest to to "Just take some Tylenol, and a nap, and you will be fine!" No one will ever be able to tell you what it feels like EVERY SINGLE TIME you go to a doctors office and they see that you take pain medication, and you can see their thoughts about you change for the worse. No one will ever be able to tell you how it feels to have someone tell you to "Just exercise and lose some weight, and you will feel better!" All that being said, until you have lived and walked in our shoes please try to keep your judgments about us until you meet us, and really get to know us. Yes, my pain impacts almost all of my daily life, but it DOES NOT make me who I am.
Amber & Amy
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.
* 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.
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.