On July 4th of 2016, I had a seizure after a night of BBQing and drinking with friends. When I woke up the next day, every cell in my body hurt, especially my head. Every day, 24 hours a day since then I have had a debilitating headache. The pain comes in waves, sometimes it hurts less than others. On any given day, at any given time, I can be incapacitated completely by the pain. And it never stops.
If you were to do a quick google search of New Daily Persistent Headache, it will tell you that it is just what it sounds like. A headache that never goes away. People who suffer from this can pick and exact day and time when the headache began.
My road to this diagnosis has been long and is ongoing.
When this began, especially because it is believed something about the seizure caused this. I have done several tests. Including, 2 electroencephalograms (or EEG), a Magnetic resonance imaging scan (or MRI), a Magnetic Resonance Angiography scan (or MRA), and a lumbar puncture (or spinal tap). I have lost count of all the medications I have tried. I have been in a never-ending circle of doctors, tests, and medications that all lead to the same result. No improvement or it made my pain worse.
I have tried everything in my power to make this pain stop. If you can name it I have tried it. I changed my whole diet. I cut out foods and added them back in. I track my water consumption. I have tried meditation, yoga, the whole nine freaking yards.
I have also been forced to put up with doctors, who were more concerned if my insurance would pay them, other than focused on truly helping me. I get it, no one wants to work for free. My insurance still pays them, but they have withheld treating me with certain tests and procedures based off my insurance. The current insurance I am on is state funded. Which means that that doctors, medications, and tests won’t get paid for in the same amount that they would if I had “better” insurance. It means they don’t make as much money.
This is how the health system works here in America. If you shell out for good insurance, you get access to better doctors, tests, and medication. Even with “good insurance” its so difficult to get immediate access to treatment. You wait for months to get an appointment for them to order a test and pawn you off on the next doctor. “Bedside manner” seems to be a thing of the past. If you’re on state funded insurance (which I have been for the last year), this whole process is even harder and longer.
I was passed around to a few doctors within the departments of my health center that I’d been with for years. Eventually, m one of my former doctors explained to me that she was at her limits with things to try, and going to this other medical center would be the next step as they have more knowledge, tests, etc. She believed that getting a different set of eyes on me would be beneficial. When I was referred out to this medical center, instead of being seen by neurology I was seen by their pain management department. I have had a lot of bad doctors, but my doctor at Stanford caught me by suprise.
Before I was on state funded insurance I was sent to S****** Medical Center, which is a prominent medical center here in California that is a learning hospital for doctors with Stanford University (which is an Ivy League college). I was optimistic about getting exceptional care due to Stanford University being so prestigious. During the time I was waiting for my appointment I lost my “good insurance” and was henceforth put on state funded insurance. Not only did I have to drive 2 ½ hours there and 21/2 hours back, this doctor just didn’t seem to want to do anything for me. Whenever I would ask a question about what she thought was the problem and what other tests we could do she would say “well your insurance won’t cover this, so let’s do this medication instead”. She kept prescribing me medication (which by the way made me abundantly worse with every new one she prescribed), I asked here EVERY APPOINTMENT if there was a new test, if there was maybe something wrong in another part of my body that may be causing my headache to manifest this way. She would either never address my question and give me the same answer, “well we don’t accept your insurance for this, we don’t accept your insurance for that”. I don’t know, maybe its just me, but you’re a f*cking doctor shouldn’t you be more concerned with ways we could figure out what’s wrong with me instead of my insurance?
Also, with my insurance, its widely accepted, and if its not accepted outright for a certain procedure, to see a certain doctor etc, the doctor will have to write a referral in which the insurance will review it and determine if they will cover it. She didn’t even want to write a referral. She didn’t even want to try. The last straw was when she told me to get a referral from my primary care doctor to get a sleep study done, even though they have a sleep study CENTER there “they don’t accept your insurance”. Again, she didn’t even want to try. I have never in all my 11 years of dealing with doctors have had one doctor mention my insurance coverage this much, or even at all for that matter. This doctor was not concerned with helping me find a cause or treatment for this issue. She was concerned with her paycheck.
I am now starting the process of getting referred to a different medical center, starting with my new primary care doctor. Again, this process is painstaking and draining in and of itself. This insurance seems to make life 10 times more difficult. It makes me not want to do it at all. As I was waiting for months for my new primary care doctor appointment, I began to enjoy my life again.
I don’t want a medication to mask my headache and symptoms (which none have made a difference so far anyway), I want to find a cause. I want to fix the problem of if can be fixed and not just mask it. Even if it comes down to masking it, I do not want to be a guinea pig for medications that put my entire body through Hell. I got to a point where I didn’t know which was worse. Dealing with the constant, debilitating pain or dealing with the dick-head doctors, being poked and prodded with sometimes very painful tests, and medication which always did nothing or even made the pain worse. I don’t know if I have the strength to keep doing this forever. Quite simply put, I’d rather deal with the pain.
With every doctor, test, and medication I would get new hope. Every time, I was torn back down again. I read a blog post once ( https://theneverendingheadache.com/my-story/) that changed my perspective and really put the gears in motion to change my train of thought.
Considering my past with mental illness I would drive myself in circles wondering what my brain was doing to me. I found comfort in these posts because I felt validated. With every failed test you get to a point where you start thinking “is this all in my head?” “Did I make this up?”. Reading this post (https://theneverendingheadache.com/my-story/) gave me that “ah -ha” moment. The biggest take away I got from this is that accepting where you are and moving forward will bring you peace. I have accepted that I am limited by this. Acceptance is a process, and by no means do I feel like I accept it every day. It’s a process of learning to live with this. I can’t work a regular job. I was working towards my second degree in anthropology when the seizure happened, and I had to drop out because I can’t attend regular classes. My whole life was halted because of this.
This is what also prompted me to start this site and my other channels. It’s positive because I truly believe that what energy I do have should be spent on trying to reach as many people as I can to spread my message and support.
As of right now we are living solely off my partner’s income. Living in California, this is difficult, and some months are easier than others. I have always and will continue to put helping other people before money. If it helps one person, this will all be worth it.
It seems like a never ending, uphill battle. Some mornings I wake up and think, “another god damn day of this”. Some days I don’t make it out of bed. Some days I am able to get up and take my dogs for a walk. Some days I can hang out with my loved ones. But this nagging pain exhausts me. I constantly feel fatigued. I get bouts of nausea and light sensitivity. From time to time I experience vertigo and fall. I have difficulty with my depth perception now as well. I avoid driving and I constantly have bumps and bruises all over my body.
My social life has suffered because of this. My mental health has also taken nose dives from time to time. I have thought about ending it all many times. I feel this draining feeling and I have thoughts of worthlessness. I sometimes would feel that the people in my life would be better off with out having to constantly take care of me.
These are incredibly damaging thoughts, but I have the skills to talk myself out of it. Of course, I have also had my psychiatric medication adjusted because the suicidal thoughts got to a point where I was seriously going to act upon these thoughts.
For me, I live how I can when I can. People in my life understand and accept that I can’t do all the things I want to or keep all my commitments. This illness has taught me so many life lessons that I would otherwise not have learned. I see things differently now. It so easy to get so wrapped up in work, school and the stress of life that we forget what truly matters. We keep people around us who are placeholders but not real friends who care enough about your wellbeing to send a “I hope your ok” text. I’m not trying to sound like a Hallmark Christmas movie I promise.
I have learned to disassociate with people who don’t care about me as much as I cared about them. I have learned to truly wholeheartedly love and appreciate the people who stick by my side through hell and highwater. I’ve learned to appreciate the things I have instead of focusing on the things I don’t. I strive to live in the present as much as I can every day.
If you are going through this know that no matter how isolating, debilitating, and relentless the pain is you are not alone. Know that despite this you can still have a happy life. I can’t tell you the pain will end. I can’t tell you how to fix it. I can tell you that you still have a life to live. Do not be afraid to live how you can when you can. You are enough. You are worthy of love and happiness. This illness sucks ass. It’s a drain on your body, your mind, and on your loved ones at times. I’m not usually one of those people who shove the “positivity only” mindset down people’s throats. It’s not realistic. Its ok to acknowledge how much this f**king sucks. But know although there might not be a light at the end of the tunnel there is light around you. Your life matters. When it comes to acceptance, it will happen where you think you’re all zen-d out, accepting what card life has dealt you and sure as sh*t something will happen that make you question your acceptance once again. Like everything I life, acceptance is a process that takes time, patience and is ongoing. But this, has been more helpful to me than any of the doctors, tests, medications, and treatments I have received.
I will keep this thread updated with my progress and encourage you to leave your experience in the comments below. Please feel free to contact me with any questions, comments, concerns, requests for specific content, or if you just need an ear to listen. I created a server on Discord for those of us struggling with this disorder so please click the link to join if you’re wanting to connect with others who can relate to what you’re going through.
Until next time,
Love and Light as Always,