Mary vs. the MRI Machine

My Neurologist doctor is like that super fancy 5 star restaurant where people are on waiting lists for months just to get a taste of their high-class plates–He’s got a lot to offer, in super high demand, and has to be booked six months out.

Most often, I see my Physician Assistant–who is super awesome, has exponentially furthered my forward progress finding help for my headaches and I love seeing her. But, seeing the actual doctor is a different type of visit. He’s just so intelligent and has a different way of thinking, so there’s always something new that I learn and he always suggests a new path to try.

Today, I continued to explain my symptoms. I told him how my atlas orthogonal treatments (post all about that coming soon!) has helped decrease the intensity of my daily headaches, but hasn’t helped my exertion headaches. Nothing has. I still feel the intensifying pounding when I do yoga, lift, run, walk up the stairs, bend over, etc. From heavy workouts to mundane every day tasks like walking up stairs–my headaches intensify and the pounding begins immediately.

Apparently, patients who experience that same type of thing (headaches intensifying by coughing, bending over, walking up stairs, etc.) often have a blockage in their venous channel. So perhaps I am among those patients. Of course, it’s a very uncommon occurrence, but people close to me know I’ve never been one to exactly fall into the “norm” category, esp. when it comes to my health.

So what does that mean? It means I have to get another MRI–but this time an MRV. It’s an MRI that looks specifically at your veins to look for blockages. If it’s positive, there’s a treatment where they put a stent in to clear up that blockage and open up flow. If it’s negative–well, then more MRIs will be taken and more serious tests need to be addressed.

So here’s to hoping that this MRI is positive (I don’t normally wish for that, nor do many people.)

Let me ask you this: how annoyed and frustrated are you when you’re not able to exercise because you’re sick, or you have a concussion, or you pulled a muscle, etc? Probably pretty frustrated (for the most part) because you want to feel active and youthful. Well, I haven’t felt active and physically youthful in about 7 years. I’m 23 years old and simply walking up the stairs and briskly walking across the room makes my head feel like it’s about to blow. It’s extremely discouraging. All I want is to be able to do yoga, run around carelessly, start  lifting again, doing anything really. Being unable to exercise or be active makes you feel lazy, large and lame. It starts to eat at your self-confidence and self-image. I say this because before my headaches became the way they are today, I was physically active every day and loved it. I loved being active and working to stay fit. It’s not even an option for me anymore.

So knowing that a positive MRI and implanting a stent in my veins could possibly bring me my old lifestyle back makes me oddly wish for a positive MRI result.

 

Anyone else out there experience exertion headaches like me? Or in any way, shape or form?

I’d love to hear your stories, advice, etc! We’re here to support and encourage one another 🙂

Thursday’s Tips and Tricks: Even When Discouraged, Keep Trying New Methods/Treatments 

The Daily Migraine is a site that brings hope and encouragement to people who suffer from chronic migraines. Even though I have chronic headaches with sporadic migraines, meaning I’m not their EXACT audience, this site is so relatable for anyone who suffers from any type of headache. 

It’s where I picked up this weeks “tips and tricks” idea:

  
When we feel like we can’t try anymore. When we think “what the hell is the point of trying another medication, another therapy, or any other treatment thrown our way?” When we feel like there’s no point in trying anymore. 

This is when we must push ourselves to try even harder. 

I have tried so many medications that I don’t even remember all of them. Honestly, my doctor will say “oh have you tried medication___?” And I say “No, what’s that?” And then they will say “Oh wait, I see in your records you tried that a few years ago” yeah.. It’s sad. 

I’ve seen specialists, GP’s, holistic doctors, etc. I’ve tried it all. Explored it all. Or have I?

There’s always something new to try and you owe it to yourself, to your body, to your mind, to try it all (given its safe for you.) 

Listen to your doctors (when you have a good relationship with them.) Do your own research. Keep on trying.

Well Known Around These Parts 

When your neurology and headache doctors office knows your number now and doesn’t even have to ask questions they already know my appointment schedule–>sad thinking I am a patient who so frequently visits the doctor that they know me this well, but a good feeling knowing I have very attentive and personable people working for me and my health 

The Most Typical of Mondays

Yesterday was a test of my patience, perseverance, and temper. What started out as a classic “Monday Mishap” escalated into a “Monday Mayhem.”

I experienced those typical “ugh” moments that everyone faces pretty often-losing your wallet (temporarily, thankfully), dumb drivers on the road, timing mishaps and office troubles–but there was one segment of my day that just really set me over the edge.

While I’ve been making some progress with my headaches and narcolepsy situation, I’ve only seemed to take numerous steps backward in my journey with food allergies.

After ending up in the ER two weekends in a row, I’ve been eating really “safe” foods because it’s nerve-wracking to eat when you aren’t 100% sure what your food allergies are. So yeah, the anxiety is continually on the rise. So I did what any normal person would do (after a year…whoops.) I made a follow-up appointment with an allergist–optimistic that the doctor would be able to ease some of my anxiety, answer some of my questions, and bring even a tiny bit of peace to my mind. Yet, I got just the opposite.

I’ve seen my fair share of doctors and I’ve seen a few who I didn’t exactly see eye to eye with regarding treatment plans. However, I’ve never seen a doctor who made me feel so belittled, frustrated and generally pissed off before. He looked at me like I had ten heads when I asked him questions and told him things other doctors have told me. For reference, I’m very new to the food allergy world. It’s not like I’ve had a peanut allergy my entire life and know how to manage it–no I recently developed a seafood allergy–which he thinks is not even possible (what?) He spewed his BS at me, shook his head like I had told him I got my information from “The Onion” rather than from accredited doctors, and sent me on my way to get a blood test for only crab and salmon (to my knowledge, there is other seafood out there, but what do I know right?) Times like these I wish I had been ballsy enough to tell him his word meant nothing to me and walked out, but I politely left the office and went to go get stuck by another needle. (although the guy who took my blood was awesome, so super grateful for that. I’ve never had such a painless experience getting blood drawn. props to him.)

I understand that there are times when people have bad experiences with doctor visits. However, for spoonies such as myself who see doctors more often than they see most of their friends, it’s extremely frustrating. It wasn’t so much that I was sad, I was just genuinely pissed off at this guy. It was a waste of my time–and spoonies also know how valuable time spent in a doctors office is when we’re trying to find answers.

I sat in my car afterward cursing the doctor wishing I had told himself to stick his handshake where the sun don’t shine, until my dad kind of set my mind right. He made me realize that there’s really nothing to cry about. I’m allowed to be pissed off, but I have to be able roll with the punches. I have to be able to take the annoyances and learn from them. I have to try to find even the tiniest positive thing from the experience and move on to what’s next.

We’ll all have days that make us want to break things and scream to the skies yelling “Why me? What did I do in a past life to deserve this shit?” But at the end of the day, we can’t change what just happened. We have no control over what and how much gets thrown in our path. We do, however, have control over how we handle those days. We can throw in the towel and walk away cursing under our breaths. We can rage until someone fixes their wrongdoings brought upon us. Or, we can take a deep breath, calm ourselves down, figure out the next step and move forward. We can gather our patience, grab a hold our temper, and persevere on.

It’s not the destruction that’s tearing you down that will define who you are or where you go in this life. It’s how well you step over the rubble and walk through the fire.

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Chronically Grateful Challenge Day 2: What Are You Most Grateful For On Your Healthcare Team?

  
I’ve seen a wide array of doctors and been to countless offices. While they all have tried to give me a diagnosis and treatment, I’ve only felt truly attended to and comfortable at a few of those offices. My neurologist and headache doctor is incredibly smart and transparent. Transparency isn’t always comforting in the healthcare world, but it’s so important and crucial to good and effective communication with your doctor. These doctors are exhausting all they can think of in order to help me. They answer my messages in a timely manner and they are able to sympathize and understand (or at least try their best to understand) my concerns, emotions, and symptoms. Patients like myself get frustrated pretty often because I have yet to find any answers, but these doctors don’t take it personally and they do what they can to help ease my frustration. I’d be nowhere without them! 

Acupuncture–Take One

Today, I laid in a doctor’s office with 18 needles sticking out of my face, ears, hands and feet. I have been wanting to try acupuncture for a while, and today I finally did it. My whole apprehension to needles and fainting reputation held me back for a while, but it wasn’t that bad in the end.

My neurologist and past chiropractor had suggested just giving it a try. They warned me that since everyone’s bodies are different, not to base my decision to try it on other people’s success stories or lack of success from the method. They told me some people feel a difference right away, some it takes a few visits and some don’t ever feel relief to their pain or a change in their body.

I’ve reached the point though, where I am willing to try almost anything to see what may help my head. I’m on the path to some more drastic methods, but in the mean time I’m trying everything else I can think of before diving into the more intrusive type procedures.

I can assure you I looked nowhere as peaceful and relaxed as this person here does. Not sure how one ends up looking this way with needles sticking out of your face.

Anyways, I sat there with needles in my face, ears, hands and feet for about 10 minutes. While I didn’t notice much of a difference today, I’m going to go back and see if a repeated procedure helps at all.

One positive from this appointment was getting a different opinion and insight from a different type of doctor. A doctor who thinks mechanically and a little bit outside of the box. He gave me great insight and his thoughts as to possible causes for my pain and assured me he would look into everything I handed him in order to see if he can help at all.

It’s not a doctor I would have ever really thought to go to, but he really did point out some things about my body that other doctors have not been able to do.

So if you’ve been debating whether or not to try this method yet, I say it’s worth a shot! You never know what different things you may hear or if it will help until you try it! And if I didn’t faint with the needles in, then neither will any of you!

My Headaches, My Life, My Story.

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This is what someone with an invisible disorder and chronic pain looks like. While it’s not visible on the outside, it’s very much real on the inside. Even though I look like I feel ok, most of the time I don’t. Starting this blog and my Instagram account (@theheadacheheroine) has allowed me to open up more than I ever have before about my health journey. However, it has also left me feeling very vulnerable and nervous of what others may think. Still though, I’m so happy to be doing it because it allows me to spread positive vibes while supporting and reaching other people who may be feeling the same way about something in their life, health related or not. I hope to be able to support fellow chronic pain and invisible illness warriors stay strong through their own journey.

Therefore, I’d like to share my story with you.

I started getting exertion headaches around the age of 12. It was a new and terrible feeling. I played competitive fastpitch softball at that time (and up until I was 16) so I was exercising and exerting myself almost daily. When the heat was bad and the humidity was high, and I was exerting myself out on the field, I would always get terrible pounding headaches.Resulting in me laying down, sitting out games and practices and feeling like a bit of an outsider compared to my teammates. I wasn’t sure what to do about it, so I just ignored it for a couple of years.

By the time I was 14 I started looking into seeing a doctor for my headaches because they hadn’t gotten any better. Between the time I was 14 and 16 I had seen neurologists, ENT specialists, allergists, and general practitioners. I had undergone an MRI, CT scan, allergy tests and IV’s. I had tried a wide variety of medicines as well. Nothing seemed to help.

During my teen years, I also found myself in the ER more times than I ever wanted. Dehydration, repeated fainting, more dehydration, extreme stomach pains, and more dehydration (or what they claimed to be dehyrdation.) I never truly understood what was happening to my body. I was constantly interrupting big plans (New Years Eve parties, Mother’s Day, and surprise parties for family members to name a few) because my health kept sending me to the hospital. It’s a terrible feeling knowing that you’re the reason parties got canceled and peoples nights were ruined due to worrying about and taking care of you. (s/o to my older brother who didn’t get mad when I threw up on his shoes outside the house next to the ambulance, my best friend for sticking by my side in the ER on News Years Eve instead of at a party with all our friends, and for my parents for always telling me they didn’t mind spending hours upon hours in a cold, stale hospital room.)

It had come to a time where I had to decide that my health was more important to me than playing the game that I had such a passion for, which was softball. I was an athlete at heart. Since my dad was the head coach, him and I were the glue that kept our team together. Therefore, my quitting resulted in the disbanding of a team that had been together for 7 years.) It was the hardest decision of my life at the time, deciding to quit playing for good. It definitely had a significant impact on me mentally and emotionally. It led me to a sad period of my life. I didn’t know how to fill the hole that was once occupied with the love of the game and my teammates that I considered family. After a year of being sad, I decided to take charge of my health and see more doctors. This time, I was prescribed Topamax (an anti-seizure drug that is sometimes used to prevent headaches and migraines.) I was hopeful that this medicine would help me, but it did just the opposite. I experienced major negative cognitive side effects. I couldn’t retain information, my short term memory was crap and I just felt foggy and dumb. After a while I knew I couldn’t be on that medicine anymore. But this only lead to more disappointment and being unsure about the future. While I was still upset to not be playing softball anymore, I knew it was in my best interest and that it would open up new doors for me. Which it did. Instead of trying to get recruited to a school to play ball like most of my teammates were doing, I ended up at Virginia Tech. Which was the best thing that had happened to me in so long. I met lifelong friends and made incredible memories that I will never let slip from my mind.

During my time at Virginia Tech, I did trial and error with a number of prescriptions given to me by different doctors. Beta blockers, blood pressure medicines, anti-seizure drugs, OTC meds,etc. You name it, I tried it. I’ve gotten multiple blood tests done (one time 8 viles of blood at a time, to which I of course passed out during the process of taking my blood.) None seemed to do anything helpful. It was getting frustrating and redundant. At school, I ran into my other fair share of medical problems that either landed me in the ER or another type of doctor’s office. Thankfully, I had family and seriously amazing, loyal friends who sat by my side in waiting rooms and who drove me when I couldn’t drive myself. (You all know who you are, and I am seriously forever grateful and blessed to have you in my life.)

It kind of became my “thing.” You know how people have “things?” Some people have a singing talent, some people are always the top of their class in school, etc. Well my thing was always being in a doctor’s office or hospital. My thing is that I’m always getting blood taken. My thing is that I have a fainting problem. One time I called my dad from school and he answered with “What hospital are you at this time?” (Granted he was saying it in a joking manner…I think…but to his credit I actually was sick at the time.)

It’s not a “thing” I’m very proud of. But it’s something I’ve embraced.

Flash forward to now and I’ve kind of started from square one again. I’m consistently seeing my neurologist, trying out acupuncture, sleep studies, allergy testing, eye doctors etc. It’s such a trying process, but I don’t want to just give up even when I don’t see results. The thing is, I know there are people out there fighting for their lives. People who live at the hospital. People who have to deal with chemo and things so much worse than what I’m going through. People who are so much stronger than I’ll ever hope to be.

While I constantly pray for those people and hope with all of my heart that they find the answers and cures they deserve and need, I’m still proud of myself for fighting my own battle.

I’ve learned a lot about myself throughout this whole process. I’ve learned that I can get knocked down and get back up again. I’ve learned that no matter how many times I get blood taken, I will never get over my uneasiness and hatred of needles. (seriously, I get weak every time.) I’ve learned that it’s ok to cry. To feel sad and frustrated. Defeated and broken. But in contrast, I’ve learned how to make myself keep being proactive and not to give up. I’ve learned coping methods and survival techniques. (AKA I’ve learned how to really binge watch Netflix and how to match my mood with a fitting ice cream flavor.)

I’ve learned a lot about the people around me as well. I’ve learned that people come and go and that that’s ok. Some don’t understand while the others try their best to. I’ve learned that I have the most amazing parents and siblings who go to doctor visits with me, check in on me, encourage me, and do whatever they can to help me feel better. I’ve learned how to tell who my really close friends are and how to never let them go. Meaning, I’ve learned who my “people” are. The ones who encourage me when I’m discouraged. Build me up when I’m feeling broken. Be strong for me when I’m too weak to be strong for myself. They can say the words I need to hear even when I don’t want to hear them.

I’m not sure what I really expected people to think about me and my thoughts when I started this blog. I obviously knew I was letting people, friends, family and strangers, into my mind after I published my first post. People will have their thoughts and opinions, I’m ok with that. I’m ok with people reading every post, looking at my blog once in a while and I’m also ok with people not ever even taking a glance. That’s because I started this for two reasons, and two reasons only. I started this blog to help me find solace through writing. To really create an outlet for myself as I continue to go against this obstacle that doesn’t seem to have an end in near. Secondly, I started this so that I could maybe reach other people who are struggling with something similar. I hope to encourage other people and create a support system for someone who may not have the support they need. I do this to hopefully help people stay positive even when the day seems to have nothing positive in it.

So I thank you for reading, supporting and encouraging me.

Maybe now, someone else will find inspiration to take their own personal story and struggle and turn it into something positive as well.

The Search For The Right Doctor

For people with chronic pain, disorders or illnesses, finding a doctor that really listens to you, answers every single question, and actually is proactive about finding you answers, is very difficult. It’s a tasking processs and by no means a short one.

I started getting headaches around the age of 12 and started seeking treatment around age 14. I have seen so many doctors I forget about them until my parents mention something like “well remember that one doctor said…” And I go “oh yeahhh…forgot about them.” 

Countless practices, front desk faces, nurses and doctors. It’s kind of like that rascal flatts song that says “God blessed the broken road that led me straight to you.” Yeah that’s how I think of it.

After all those years and hours spent waiting to see a new doctor, I found a practice and doctor I really love. I was there today (again) and I felt like when I was talking to the PA, she was actively listening and giving me all of the information and advice she had and could think of.  

 
You know it’s a good practice too when you have to book like 3-6 months in advance an appointment to see the actual neurologist. Before that, you have to see the PA. It shows he’s in very high demand, and while my schedule doesn’t like that, I really do. Gives me confidence that he knows his stuff. 

So to everyone out there who is still searching for a doctor that seems to really want to listen and help, they’re out there. Just keep looking. Keep up that trial and error process to eliminate the ones who aren’t helping. Don’t let any doctor dismiss you or your problem! 

Patience Is A Virtue

Sometimes things aren’t clear right away. That’s where you need to be patient and persevere and see where things lead.

-Mary Pierce

One of the biggest things I struggle with in life is patience. Friends and family of mine are sure to agree with that. I try my best to work on it, but we all have our flaws and impatience is one of mine. 

Being impatient brings no good into your life, though. It only makes way for worry and anxiety (Both of which I’m a frequent victim of.)  

Living with chronic pain makes it harder for me to be patient. I don’t want to wait for answers. I don’t want to wait for relief. I don’t want to wait to see if the next day I’ll feel well enough to get off the couch. But that’s all we really can do, isn’t it? Wait. So we can either wait with patience, and try to get peace of mind or we can wait impatiently, only adding unnecessary stress to our stressful lives. 

This quote I put up above speaks to me because we can never be clear why something is happening in our lives. We don’t know why we are put through the struggles thrown our way, but instead of worrying about finding the answers we need to find patience and perseverance to see where we will end up after the storm ends. 

So each and every day I tell myself to practice patience. We will end up where we are meant to be, we just have to have faith and be patient until that time comes. 
what do you do in order to remain patient when you aren’t seeing results from suggested medicines, methods or suggestions provided by doctors?