It has been quite some time since I made a post to this blog site. As you know, I am a college student and, well, time gets away from you. The first semester of this past school year, I did only online courses. I still carried a full load with taking 14 credits, while doing all from my home. It was still early in this migraine journey, and there were still a lot of unknowns, so I chose to do online courses instead of missing a full semester. There were times I was not even sure I could handle all the work, but I managed. One of the scariest things about living with migraines is the unknowns. When will the next major migraine attack occur? Do I have the right tools to help me get through it? Will I be able to handle all of the doctor’s appointments? What happens if the lights are to0 bright or the noise is too loud? These are all questions I think ever chronic pain sufferer asks themselves, but they are all valid questions.
I carried all these concerns with me, but I still chose to go back to face-to-face classes for my spring semester (mainly because I had to take a science course and that has to be completed face-to-face). I had some really rough days, shed a lot of tears, and yet I still made it through the semester. When I would tell people I had chronic migraines, they would look at me, so confused and ask, “So do you have one right now?” The answer was always yes, but sometimes the pain is worse than others, and you learn, to a degree, how to live with or at least manage the pain.
A lot has happened as far as treatment, in September I had a hospitalization for Ketamine infusions (I’ll save that trauma for another post). I also have an upcoming inpatient stay for another round of lidocaine infusions. I apologize for my absence, and I will try to be more present.
Anytime someone walked into my room at the hospital, I was asked, “What is your pain level on a scale of 1-10?” I cannot even begin to describe how much I dreaded that question. That question frustrated me, so I tried to come up with different ways to answer it. But then I realized how subjective those numbers meant. Because a level 7 pain to me, might look and feel completely different than someone else’s level 7 pain. It frustrated me so much that I wrote the following while in the hospital to demonstrate my frustration:
” What is your pain on a scale of 1-10?” Well, let us see… do you just want a number for insurance purposes? A scale of 1 -10 is so subjective. I learned that in gymnastics. Here is the difference, in gymnastics the start value is a 10.00 (well most of the time). We base deductions from the 10.00 on a book called the ‘Code of Points’, with real definitions. For example, if you step out of bounds on the floor with one foot it is one-tenth of a point from your score, if you step out with two feet, it is three-tenths of a point. If you touch your feet to the floor in a bar routine, major deduction. There are definitions and rules. And get this, each skill even has an assigned letter, for further definition and execution. Example, a pike stalder on bars is a D-Skill, complete the skill perfectly it’s worth fourth tenths. These letters and numbers are still subjective, but not as subjective as numbers that come with no real definition. Every pointed foot and 180 degree split counts in gymnastics, they add up, and deductions add up to, but the pounding in my head and the pressure in my temples doesn’t add up to a number with no definition. Don’t try and tell me that “hurts a little bit” under the 2 on the pain scale is a definition. So when you ask me “What is your pain on a scale of 1 -10?” you are not providing me with definition or requirements, where is my code of points for pain? I truly cannot answer a question when the number is so subjective and differs from the type of pain and the patient. Each doctor will interpret my number differently because they all have their own definition that I’m not aware of. How about I explain my pain and you choose the number? Kind of like a judge would in gymnastics. It is hard, isn’t it? To put a number to a subjective description. It is not working for me, and I don’t understand. Do not give me a subjective scale or a picture with faces and no definition. There are no deductions for flexed toes on a pain scale. So please don’t judge a subjective number with no definition or code of points to the flips and twists going on in my head.
Since the second day of having this migraine, I had this overpowering desire to shave my head. I know it sounds extreme, but that is how much pain I was in. If my hair was down it was touching my face and bothering me if my hair was up it felt like it was being pulled super tight and that would hurt. It was a constant battle of hair up, hair down, hair up, hair down. So I asked my Mom, “Can I shave my head?” Her reply was, “If you really want to, but you are going to have to get someone else to do it.” I almost drove myself to Hair Cuttery several times, but then the thought of them touching my head would scare me off. So when I was at Methodist Hospital, I called my cousin, and I asked her to shave my head. And she did. So I had a buzzed head, a major migraine, all while dragging an IV pole around with Lidocaine and other things being pumped into me. My nurse told me she would remember me because I was the first patient of hers to ever shave my head while on the unit. Now the shaving of the head did not help the migraine, but it helped that feeling of being gross and not knowing what to do with your hair. Another plus is that it made the length of showers a lot shorter since I was only allowed to be unhooked from the infusion for 15 minutes. On another note, the one doctor thought that me deciding to shave my head was me being delirious, but I had to explain to him that this was planned and had wanted this for a quite some time. Plus I looked like Eleven from Stranger Things.
I had side effects while on the Lidocaine Infusion, but nothing that was too awful. I had auditory hallucinations, and I had trouble seeing colors, but that was all. However, during my time at Methodist it seemed as if my pain would reach a whole new level at night and first thing in the morning. So one night the nurse came in to give me midnight medication and do vitals, but I was in so much pain and had the worst nausea. So he gave me Zofran and Ambien to try and help me sleep. Here is the thing, I have taken Ambien in the past for insomnia and have had crazy reactions during the first 30 minutes after taking it, so I was aware that it might happen when he gave it to me, but I was in so much pain that I did not think I would get up. So this is how the night played out, and a little side note, none of the nurses or aids new this was happening. Even after the Zofran, I was still super nauseous, but I was also feeling weird due to the Ambien. I had a basin on my bedside table filled with things like tissues, colored pencils, chapsticks, notebooks, etc. But all the sudden I decided I needed that basin because I was going to throw up, so I dumped everything out onto the floor. Now if I was not on Ambien I don’t think any of this would have happened, but because I was I was not acting right. So after dumping everything onto the floor, I decided I needed to go to the bathroom, but my IV pole was plugged into the wall, and I could not reach it, so I began telling my Mom and my friend to help me and got very frustrated when they were not helping me, because they were not there. I finally walked to the bathroom, pulling the cord from the wall, but when I was done and tried to leave the bathroom I fell backward onto the tile. I sat there for probably about 10 minutes or so and then got up and tried to walk back to bed, but fell forwards again and hit my head on the foot of the bedside table. I was okay it was not too hard of a fall, but then I decided I really needed chapstick which was on the floor from when I dumped the basin out, so I crawled to get it and finally got back in bed. Nonetheless, it was pretty crazy. So the next morning I shared some of this with my nurse, horrible idea because then she put me as a Fall Risk. Now that I was a Fall Risk, I had to wear ugly yellow socks that were 5 sizes too big, wear a bright yellow bracelet, and have the bed alarm on. The bed alarm will always be the worst thing in the entire world. I made one tiny movement, and the Bed Alarm would go off screaming. It was the most frustrating thing in the world, because the only reason I fell was because of the Ambien, and I refused to take that anymore. Now don’t get me wrong I know that they have to protect their patients and follow protocol, but I will never get over how horrible the bed alarm is.
So basically this is the second half of my Methodist Hospital Headache Unit story. I am grateful for the kind doctors and nurses, even if they turned the bed alarm on. Lidocaine Infusions work for many patients, but it did not seem to do the job for me. I am not trying to give any medical advice or persuade types of treatments, but rather just share my story. These are all thing that I wish I had known before I went into the hospital. So here is a summed up list of Methodist Headache Unit:
You will most likely get a PICC line
You will put hooked up to a Telemetry Monitor
The Nurses and Doctors are fantastic and truly care about their patients
They will wake you up in the middle of the night to do vitals
You can only be off of the IV for 15 minutes a day (or at least in my case)
They say that the average stay is about 5 days (mine was longer)
Be honest with your doctors and nurses about your pain so they can help you in the best way possible
Go to the classes offered, because you will meet people going through the same treatment
Ask as many questions as you can think of, there is no reason you should feel in the dark
Not all hospitals are as great as Methodist
New Medications Mentioned:
Ambien: (Zolpidem) “Used to treat insomnia (difficulty falling asleep or staying asleep). Zolpidem belongs to a class of medications called sedative-hypnotics. It works by slowing activity in the brain to allow sleep.” https://medlineplus.gov/druginfo/meds/a693025.html
I wrote this on July 8th, 2018, while at Methodist Hospital. It shares the real feelings and experience I was going through at that exact time.
I was unable to truly explain my pain to the doctors, and at times it felt like they were not listening, or if they were they did not truly understand my words, so I decided to write them out. This is how it went: I am not sure if my pain is lessening or just changing, but I am finding it very difficult to explain my pain. Before it was a migraine, my head hurt, more pain on my right side than my left side. Sometimes it was pressure where my brain felt like it was coming out of my nose, or it was throbbing which was worse when I laid down or just a general ache. Those descriptions seemed like enough before, but now they don’t. The pain is constantly changing and as soon as I think it is not as bad, then minutes or even an hour later I get a spike. Well, I don’t like the description ‘spike’. My head is the worst at night, like when they come in to do vitals, and I am even just a little awake I can feel how horrible and achy it is, but somehow I am able to go back to sleep right away, or not after too long with surprises me. (Me editing later: that was not always true there were some nights I could not go back to sleep for hours or even at all because the pain was so severe). In the morning its always been a horrible achy pain, always higher than an 8, and it feels a lot different than the pain I feel all day. Usually, within 10-40 minutes, that “intractable” morning pain begins to subside. Intractable: hard to control or deal with, difficult, stubborn (yes I had to look up the definition). The pain would not go away all at once, but gradually, then in some way a ‘day’ pain begins. Every day is different. I am having fewer days of throbbing headaches, and even fewer days of pressure headaches. But it feels like when that achy headache build it still builds to a very high point. I keep saying my pain is above an 8, but that is based on my original pain scale, not the pain that I am currently cycling through, even though it is not the same cycle every time. I feel like I am able to sit up and hold conversations for longer periods of time, but once I start to feel like talking is taking a lot of my energy the pain really comes along with it. Also, I’ve been doing my walk, showering, personal hygiene, and all that good stuff. For example, after I shower I feel like I ran a marathon and within 30-60 minutes I have a horrible achy migraine. On another note, I feel like before I was able to sleep during the day, like a little 1-hour sleep nap, now I can’t. Part of that is the fear of waking up with that horrible morning migraine. I don’t know if any of this is helping explain my pain, but I was told tobe honest, and I am really trying. July 8th I can hands down honestly say that was the worst pain I felt since the ER. For like 4 hours I was so scared because the pain had reached a new level of 10 and I was scared I was going to be stuck with that. It did subside, but it definitely caused me to be fearful. I’m not sure if it was the Ketamine or other medications, or maybe just time that broke it, but I never want to feel that again. Some points during the day I seem to be more light and sound sensitive than others. I still can’t watch videos because of the movement plus sound is too much. The car alarm that has been going off for the past few days is annoying but not painful, but the bed alarm leaves a ringing in my ears for 15 minutes. I think I covered all the pain portion now medicine: I am still hopeful I will find relief. I’ve now officially had this migraine for 3 weeks, and been here for 6 days, I think. I was hoping for even lower numbers, but I understand I am difficult because of the medications I am allergic to and sensitive in general. But please understand that I am in pain.
I last mentioned that I was transferred to Methodist Hospital located in Philadelphia, Pennsylvania after the previous hospital was out of options, and made the choice that a Center City Hospital might be able to do more for me. So off I was to Methodist Hospital. Unlike the previous hospital where I stayed on the general neurology floor, Methodist had a closed unit for just headache patients. I arrived there at 7:00 pm on July 3rd, 2018. I talked with the on-call resident and she told me that I would be starting Lidocaine
Infusions and she shared some of the side effects that I may have. Hallucinations, confusion, dizziness, vivid dreams, etc. So after being shared information on how Lidocaine works and how it would help I was under the impression that it would not only help my migraine, but also other pains I had going on. I received a PICC line on July 5th, 2018 so they could continue the infusions without upsetting my veins even more. I cannot positively say that the Lidocaine worked completely, but the Hospital stay was eye-opening. The Lidocaine did not take my migraine pain away, but it did help my symptoms that came along with the migraine. Personally, I did have some auditory hallucinations, like I felt like I constantly heard water dripping in my room, even though there was not. I also had some issues with my vision, for example when I tried to color all of the colored pencils looked the same color.
I went into the Hospital in July, for those that do not know that is the dreaded month where all of the residents start. So instead of just having one or maybe two doctors doing rounds in the morning, I had seven to eight residents and one attending. This was good and bad, I met some really amazing residents, and I could just tell that they were going to make it far and be a great Attending someday, but others did not leave the best impression. Methodist Hospital also provided me with the opportunity to get to know my nurses better, and they were all so kind and took their time to listen to my concerns and advocate for me.
Another amazing thing about being in this closed unit at Methodist Hospital is that you are required to take classes. These classes consisted of Nutrition advice, Biofeedback, meeting with Psychologist and talking about how this migraine has taken a toll of your life. However, the best part is that I got to meet other migraine patients, just like me, who were going through the same treatment and experiencing the same thing. I was one of the younger patients there and so a lot of what the other patients shared made an impact on me. Some traveled from all over the country to just be at this hospital and get this treatment, so I was lucky that Methodist was in my home state and very close home. Some people had to quit their jobs, others were unable to take care of their children, and quite frankly it scared me. I was a college student, and I did not want to let this migraine control my life. So I tried with all my might to believe that this Lidocaine Infusion was going to be the cure, it was not. A few days into my stay the doctor suggested trying nasal Ketamine in addition to the Lidocaine, however after two days of doing that we had to stop because my liver was not tolerating it. Yet, I am not convinced it was the Ketamine that was messing with my liver. We tried magnesium and DHE (again), we tried Zyprexa, and Keppra, but nothing was making the pain any better. And before when I mentioned that I thought it would help other pain in my body, I could tell it was not working because at the other hospital they tried to put an IV in my hand and it swelled and bruised so bad, and the Lidocaine was not helping that pain. It is such a minuscule detail, but it made me understand how this treatment was working.
On my third to last day at Methodist, they decided to do a Lumbar Puncture to see if there was pressure and other things like Meningitis. Now here is the best part, actually the worst part. One of the residents came into my room to do the Lumbar Puncture, she was amazing, and she explained every tool that was in the kit and told me exactly what was going on. She double checked to make sure I was numb enough and then stuck me once,
missed, stuck me again, missed, stuck me a third time, another miss, and one more stick and a miss, so I let her try one more time, but she missed again. So that was five missed tries. She told me she was going to get another resident that had done more Lumbar Punctures before and that she might be able to do it. However, I am going to be honest, because I believe everyone should know that not every resident is kind and respectful of the patient’s needs. This other resident came in, and with my back facing her because of how I was laying for the procedure she sat down, gloved up, and was about to begin. But I had stopped her because I felt the numbing medication wearing off, so she numbed me a little bit more, but not enough because I could feel the needle. The other kind resident who had missed came around and held my hands to comfort me, an I cannot thank her enough for that, it was not her job to do that, but she did because she genuinely cared about her patient. The resident that was now going to attempt stuck me four times and missed, and by the last one I knew that all of the numbing wore off so when she pushed that needle in I could feel every nerve in my body like I was electrocuted. I screamed so loud that the people on the other end of the hallway heard me. Now let me point out that the second resident that came in never addressed me, never shared her name, and when I screamed so loud, she just left the room without cleaning me up and making sure I was okay. So I had 10 missed Lumbar Punctures before they decided they were going to do it under Fluoroscopy. On my last day I went and had a Lumbar Puncture under fluoroscopy, and they did it on the first try –all of that for it to come back negative.
Ahh, but that is not all. I left Methodist hospital with the same migraine, a positive feeling of all the patients that I had met and talked to, a new neurologist, and a traumatizing experience with Lumbar Punctures. But it does not end here. Unlike when you get a cut, and your blood coagulates so you stop bleeding, your spine has no coagulation factors, so sometimes after a spinal tap your spinal fluid leaks out and it causes an awful sharp headache called a Spinal Headache. Yup, my luck, I got one of those. It was a completely different type of pain than what I originally started with. Every time I sat or stood up, I would throw up because my spinal fluid was not balanced, so lucky me on my third day of being out of the Hospital I was back in the ER for a blood patch. A blood patch is where they take blood from your arm or somewhere else and they put it back into the same area you had the spinal tap so that the blood can coagulate. After 45 minutes that spinal headache was gone, but I was still left with my horrible migraine.
Overall, my experience at Methodist was amazing, it may not have taken my migraine away, but I learned a lot and am grateful for the new ideas and treatments that were shared with me.
New Medications Mentioned:
Lidocaine: I could only find information on injection or oral, however I will also post the research from the lidocaine infusions. “Local anesthetic (numbing medication). It works by blocking nerve signals in your body” https://www.drugs.com/mtm/lidocaine-injection.html#WhatIs Here is research Link: https://jdc.jefferson.edu/cgi/viewcontent.cgi?article=1100&context=neurologyfp
After my first complex migraine on June 16th, after receiving Botox on June 17th, and after 6 days of trying Benadryl, Zofran, Cambia, Ibuprofen, and Prednisone, I decided it was time to go to the Hospital. I know many migraine patients go to the ER for a number of reasons, whether it to break a migraine/headache cycle, to abort a really bad migraine, etc. However, I had never been to the hospital for my migraines or headaches, so I did not
know what to expect. My mom, who also has migraines and is a nurse, explained to me what they might try and what to expect. I really did believe that one ER visit and I would be all better, I was wrong. If you have not been to the hospital for migraines, this blog post might help you understand what might happen. Obviously, not every hospital has the same headache protocol and treats each patient different, but this was my experience.
I went to the emergency room on June 23, 2018, which was a Saturday. Upon arrival, they went through all the normal intake things, like vitals, medications I am on, blood work, etc. I began with just an IV Saline drip until the doctor on call was consulted. I was grateful to have my regular neurologist in the hospital that day, so she stopped down in the ER to check on me and give her opinion. So the hospital I went to had a “triple cocktail” headache protocol routine they follow. This consisted of Benadryl, Reglan, and Toradol. There is generally suppose to be a waiting period between when the Benadryl is given and when the Reglan is given, but because I was in the ER that time was cut in half. Five minutes after the nurse pushed the Reglan I began to have a reaction. I felt like I was crawling out of my skin, I could not lay still, I jumped over the bed rail, tried to pull my IV out and run. That reaction is known as a dystonic reaction or extrapyramidal symptoms. More Benadryl was given to reverse the reaction, and it did. After about an hour of waiting for the Toradol to do its thing, I was still in pain. The next course of action was to try IV Solu Medrol, in case it was to work better than the oral Prednisone I had been doing for the past three days, but again I was still in pain. After that, my neurologist recommended that we try DHE, which is a success for many migraine patients, and I wish it worked, but nope… another allergic reaction. This time I started having really bad chest pain and my throat was tight; it was not a fun experience. I had an MRI done, but it did not show anything, which I did not expect it to. However, I did use a few choice words with the Doctor for ordering a loud MRI for a migraine patient. I was then admitted to the hospital because there was nothing left to do in the ER.
When I got to the neurology floor, I had a nurse come in and explain that they were going to try to do the “triple cocktail” protocol again, except this time with the appropriate amount of time between each of the medications given. However, I still had a reaction to Reglan and was given Cogentin. We tried DHE again the next morning, but the same thing I had chest pain. I spent the next 3 days in the hospital trying different steroids, anti-inflammatories, and a bunch of other medications. They decided to send me home, in the same amount of pain that I came in with, because there was not much else they could do.
When I got home, my neurologist called and asked me to get my D-dimer blood levels checked, and they were slightly elevated. She asked me to come back into the ER for an MRI with contrast to check for blood clots, so June 29th I was back in the ER. However, the Doctor on call ordered a CT with contrast rather than an MRI that was I would not have to go through that horrible noisy experience again. Thank goodness. But still the CT showed nothing, and I was admitted back into the hospital. This time we tried magnesium drip, a 3-day steroid drip, Zyprexa, Phenobarbital, and at one point Ativan which I had a reaction to as well. This was when the conversation started about sending me to a city hospital for further treatment. They talked about Thomas Jefferson University Hospital for Ketamine infusions or Methodist Hospital for Lidocaine infusions. They were able to get me a bed at the Headache Unit at Methodist Hospital for Lidocaine infusions, so on July 3rd, I was transferred there. I am someone who loves to read medical research, but I was in so much pain that I could not read or understand what was being put into my body, which frustrated me. It was not the best experience, but it is part of the journey and something to share. Like I said each hospital handles Headache patient differently, but this was my experience. My next posts will share what it was like at Methodist hospital as well as Jefferson, which I think many people will find helpful.
DHE: (dihydroergotamine) Ergot Alkaloids- “Works by narrowing the blood vessels around the brain and affects blood flow patterns that are associated with certain types of headaches. DHE 45 is used to treat a migraine or cluster headache attack” https://www.drugs.com/mtm/d-h-e-45-injection.html
As I mentioned in my Getting Started post, June 16th, 2018 was a life-changing day for me. It was not life-changing in a positive way, but rather in a very negative way. Allow me to kind of set the scene and lay out the picture. I was taking a six week Summer course, Microbiology and Immunology. The class is required to get into nursing school and trust me it was not an easy course. It was three and a half hours long for four days a week. I had to memorize bacteria, fungi, parasites, and what symptoms they presented with, how to test for them, and how they can be treated. It was a lot, but I was actually enjoying the class, until one day. It was the last test of the semester before the final, and I felt really confident. The tests were usually only about 20-25 questions long, and you had 25 minutes to complete the test. For this test, one question asked to write each step of the Acid Fast Stain. The last step is to apply the counterstain called Methylene Blue. I know there are a lot of scientific terms, but for reference, I had been working with Methylene Blue for the past several weeks, and it was not something I should forget how to spell. When I reached that question, I wrote “Methylene,” but then all the sudden I could not figure out how to spell ‘blue.’ Blue, a word I learned how to spell in elementary school, but I could not figure out how to spell it. I turned my test over to see if the word blue was written somewhere on the other side and it was, but when I went to copy it onto the other question I could not write, my hand would not do what my brain wanted it to do, and then all the sudden I could not read and all the words on the page looked like a different language. I put my pencil down and began moving my hands, clenching and straightening them out over and over again, but I could not get my left hand to do what my right hand was doing. My legs were numb and tingly. The professor must have seen this, and she came over and took my test away from me. I went into the hall, able to walk just fine, but I felt like I was in a foreign place and had no clue what was going on. My vision had black spots, something I never experienced before. I stayed out of class for about 30 minutes and when I tried to go back I was still unable to take notes, was very confused about what was going on, but I just sat there. That specific class day was essential because we had to do a lab where we were given an unlabeled specimen and had to run tests to guess what it was. As soon as I got it I knew what it was and I knew that if I put it on a clear agar plate that it would grow black, but instead I picked up a black plate thinking it would turn clear. I was lost, confused, and my left side could not do what my right side was doing. I do not remember driving home that day or even how I got in my car, but when I got home I remember calling my Mom saying “I think I just had a stroke.” But then I remembered learning about complex migraines and how they can present like a stroke, it was odd though I was not having any headache pain. My Mom called my neurologist and I went and got Botox the next day to see if that would help. It did not. The next day is when the real pain started. I could not look at my phone or put the lights on because it caused intense pain, I was unable to listen to music or watch TV because the visual and the sound were just too much. My neurologist recommended that I do Zofran, Benadryl, and Ibuprofen or Cambia as a three-part ‘cocktail’ a modified version of what they would do in the Emergency Room. We tried that for four days, but I could not take the pain anymore, and we were off to the ER.
I had never experienced a migraine like this before, I was in so much pain it made all my other migraines feel like nothing, I was having migraine symptoms I had never known about such as visual changes, ringing in my ears and extreme sensitivity to sound. My head hurt so bad I was throwing up and felt like I could not move. My first and I hope my only Complex Migraine happened in school and I was terrified. June 16th was the beginning of a journey I was not prepared for, a migraine like no other that currently (December 27th) I am still battling. I will continue to share my story and how this all plays out. There were many hospital visits, numerous doctors, and some crazy treatments that will soon be shared.
Complex Migraine can mean many thing but in my case it was referred to as a Hemiplegic Migraine which is defined as “a rare type of migraine headache. Like other migraines, hemiplegic migraine causes intense and throbbing pain, nausea, and sensitivity to light and sound. It also causes temporary weakness, numbness and tingling, and paralysis on one side of the body. These symptoms start before the headache. https://www.healthline.com/health/migraine/hemiplegic-migrainehttps://www.healthline.com/health/migraine/hemiplegic-migraine
Benadryl: (Diphenhydramine) is an “antihistamine that reduces the effects of natural chemical histamine in the body. Histamine can produce symptoms of sneezing, itching, watery eyes, and runny nose. Benadryl is used to treat sneezing, runny nose, watery eyes, hives, skin rash, itching and other cold or allergy symptoms.” https://www.drugs.com/benadryl.html
I have found that starting a blog like this is a little more difficult than I expected. Mostly because I feel the need to share the background story of how I came to this point and not just what is going on right now. So this post is going to be a little bit more of a background story, and then I will share all the things I have been experiencing lately.
So I have had headaches for as long as I can remember, but my very first migraine was on my thirteenth birthday. For many years my migraines were once in a blue moon until about three years ago they started to become more frequent, like one or two a month. However over the years things began to get worse, and I had about 6-10 migraines every month, but I was having headaches nearly every day. I was usually able to control the headaches with Ibuprofen and occasionally Excedrin, and when they got really bad, I would take Cambia. For those that do not know what Cambia is, it is a powder form of Diclofenac ( a type of NSAID) that you mix into a little bit of water. It may taste like horrible black licorice, but it was a life-saver when I was having a migraine or even just a really bad headache day. Starting two years ago I began receiving Botox every three months. Did it work? Well, kind of. I still had headaches, so it felt like the Botox wasn’t working, until all the sudden, towards the end of the three months, I could feel it wearing off and my headaches got worse. I did try a round of Dysport, which many say works the same as Botox, but for me, it did not work at all.
Not everyone has the same migraine symptoms, and sometimes it is hard to describe what a migraine feels like, especially to those who have never had one. My migraines do not always present with aura, but rather a considerable increase in pain, sound, light, and smell sensitivity. They were not always debilitating, they may have affected my concentration and the amount of time I could be functional, but I would still be able to attend classes, go to work and be present at other activities.
I began seeing a neurologist when I was about sixteen. I was not the best patient in the beginning because I refused most of the medications that were recommended to me because I was scared of the side effects. I did not want to feel groggy, tired, experience weight gain, or any of the other bad side effects that came along with these medications. I agreed to take a muscle relaxer because I had body aches all over, especially behind my jaw, neck, and shoulders. Here is the other thing, I have to be very careful about what medications I use, and the level of risk of becoming addicted would be because my father became addicted to pain medication and there is a possible chance that I could become an addicted as well. Addiction is a huge fear of mine. So because I refused so many medications, I was a difficult patient, but at the same time my migraines were not very frequent so, I was in no rush to find a preventative. However, looking back on it now, I wish I would have started a preventative a long time ago. Instead, I was popping ibuprofen like it was candy, and was warned many times about rebound headaches (like I said I was not a very good patient).
So there is not to much background to share, but it is a place to start, and how I ended up where I am today. I will share my story in greater detail in my next post, but let me just say that on June 16th, 2018, life made a dramatic change. I would not be writing this blog if my migraines and headaches were still the way they were before June 16th, 2018, but if you follow along you will see why I started this and why it is vital for me to share my story.
Excedrin: Combination of Aspirin, Paracetamol (Tylenol), and Caffeine.” Excedrin is used to treat pain caused by tension headaches, migraine headaches, muscle aches, menstrual cram[s, arthritis, toothaches, the common cold, or nasal congestion.” https://www.drugs.com/excedrin.html
Cambia (diclofenac): An NSAID, used as an abortive. “Cambia is used to treat a migraine headache attacks, with or without aura, in adults 18 years of age and older. It is not used to prevent migraine headaches. Do not use Cambia to treat a cluster headache. Cambia will only treat a headache that has already begun. It will not prevent headaches or reduct the number of attacks.” https://www.drugs.com/cambia.html
Botox: Botulinum toxin type A, a toxin made from the bacteria Clostridium botulinum works by “weakening or paralyzing certain muscles or by blocking certain nerves.” It is commonly known for the use in cosmetics, but they are finding it to have many medical benefits as well. https://medlineplus.gov/botox.html
Dysport: abobotulinumtoxinA (Botulinum toxin type A) Almost identical to Botox.
My name is Becky, and by the name of this blog, I am sure you can guess that I have migraines. I am 20 years old and a college student working my way towards becoming a nurse. I was a gymnast for 10 years, and I enjoy school, I love to write and being with my family. I began having headaches from a very young age, but my very first migraine was on my thirteenth birthday (what a wonderful way of starting my teenage years). Migraines run in my family, so I was not shocked when I began to have them. There were a few instances in my life when my migraines got significantly worse, such as after I had my wisdom teeth removed, after a really bad back and neck injury from gymnastics that forced me to quit, post ear surgery to remove a cyst, etc. Aside from migraines, I was also diagnosed with depression, anxiety, RSD or AMPS (Reflex Sympathetic Dystrophy or Amplified Musculoskeletal Pain Syndrome) after a sprained ankle at gymnastics practice, POTS (Postural Orthostatic Tachycardia Syndrome) which was diagnosed after my back injury. Like many migraine patients, I am still in the works of finding medications that are right for me and have seen numerous doctors. Up until recently, I was not having migraines very often, but I had daily headaches that I was able to treat with ibuprofen, Excedrin, or Cambia. However, this all changed in June when I had my first complex migraine, and since then I have had one continuous migraine for seven months. I wanted to start this blog to share my struggles and experiences with others that are going through a similar situation as well as raise awareness of how many people this disease affects. I am a teenager who is suffering from migraines, and I want other teenagers to feel like they can speak out as well. I will be sharing what my journey has been like and what is to come.