My Story For Migraine Awareness Month–A Story of Hope
For about as long as I can remember, I’ve dealt with a lot of headaches and occasional migraines. When I was approx. 10 years old (I’m 23 now), the headaches became a daily thing. The headaches were mild enough that I could mostly just endure and go on with normal life, and just take something if it got too bad. I tried some different things like chiropractic and osteopathic treatments (I had a lot of neck pain) and had some allergy testing, but nothing really made a difference, so I just endured and ignored the pain. The headaches gradually got worse and I started having some mild jaw problems like soreness and popping, but nothing too major. Then when I was about 17, I started getting a lot of sinus infections. I was on quite a few courses of antibiotics and tried some other stuff over the next months, but nothing really gave me lasting relief, and I had pain/pressure around my sinuses along with the headaches. I was still mostly able to continue with normal life, I just wasn’t feeling great.
Things got a lot more intense, though, in the spring of 2013 (I was 19). I went to the dentist for a small filling (I have great teeth and almost never have cavities, so it was unusual). He had trouble with the Novocain and had to try several times with injecting it, which we later learned was part of my problem (the facial pain specialist I later went to said injecting it so many times probably took a problem, which I already had going on with my jaw, over the edge). Well, I was eating something later in the day and my jaw joint popped really loudly, but I was still numb and didn’t think a lot of it…but as the Novocain wore off I started to feel a lot of pain in my jaw. I put up with it for a little, but it wasn’t getting better, so I went back to the dentist. He was concerned and wanted me to go right to a TMJ specialist, so we set up an appointment with him. When I talked with him he confirmed that I did have a pretty big problem going on, but was hopeful. He made a mouth appliance (night guard for grinding) and sent me to physical therapy. I did the exercises and went on the soft food diet. I continued physical therapy and wore the night guard for the next few months, but I still got worse. Finally the doctor said he couldn’t do anything else for me—that he can help most people, but all good options were exhausted except surgery. He said that he needed an MRI to confirm it, and then he would send me to a surgeon in Boston who, he said, was the only one he would trust to operate on me. The MRI did confirm what he thought, except that I was worse off than he had realized. Along with the severe jaw pain, I was having intense headaches and chronic sinus pain/pressure. (Looking back, I see that was all part of the migraine issue…these were not separate problems.) After waiting to see the Boston doctor (I actually was able to see him at an outpatient facility north of Boston, where I was also able to have the surgery done) for some months, I was able to have a consult with him early in 2014. He agreed with what my other specialist had told me, and In February of 2014 I had bilateral TMJ arthroscopy for displaced discs. It was an outpatient procedure and minimally invasive. I don’t even have scars from it! The relief was almost immediate. The next few weeks as I recovered I felt well, but I soon got a sinus infection and had some return of the jaw pain. My doctor treated me for a sinus infection and after trying different things and not improving, I was sent for a sinus CT scan and given a referral to an ear, nose, and throat doctor. I was also sent for physical therapy again, which was more helpful after the surgery, and my jaw surgery turned out to be a great success…it just took a lot of time to get full relief. I was told that the sinusitis and headaches should improve with the jaw surgery; that those problems were closely related to or aggravated by my jaw trouble; but sadly those symptoms persisted even after my jaw was healed and functioning well. My problems were more major than my doctors or I realized at the time.
In the spring of 2014, I went to see the ENT. He said that my sinuses were no longer infected, but very inflamed. He also told me that the CT scan showed a deviated septum (crooked bone in the nose), but he would try to treat the sinusitis without surgery—he thought I’d improve with what he was going to try. He tried more medications and nasal sprays on me, and nothing helped, so surgery seemed to be my best option. The sinusitis was, if anything, getting worse and I was having very bad nosebleeds. Also the sinusitis seemed to be aggravating my jaw (which later did improve as my sinuses improved after I had sinus surgery). So we scheduled sinus surgery, which I had in June of 2014. I was glad that I was able to have it done close to home and not go nearly so far for surgery this time. After recovering from that surgery, things were improved with my breathing and a lot of issues I had that were related to the sinus problems (such as nosebleeds, teeth pain, ear pressure), but I was still having “sinus pressure” and intense headaches. So in the fall of that year I had allergy testing, tested positive to quite a lot of indoor and outdoor allergens, and started allergy shots. The doctor thought that was what was still aggravating things with my sinuses and headaches. After a few months of shots, once I reached a certain stage, I was taught how to do the injections myself. Now I am still doing allergy shots at home once every two weeks. It’s nice not to have to spend so much time in the doctor’s office! (The allergy shots have helped decently, but it wasn’t enough to “fix” my issues.) Anyway, around that time I started getting more migraines. In the past I had mostly dealt with daily headaches and occasional migraines, but the migraines became very frequent and severe. All of this surgery and chronic illness seemed to aggravate my migraine issue, and everything I was dealing with seemed related. My specialists said the “sinus headaches” and jaw pain were all part of my migraine problem. I got some migraine medication which did help to abort the migraine when I felt one coming on, but that soon lost its effectiveness. I was also getting physical therapy for my neck in hopes that would help the headaches, but nothing brought permanent relief. Early in 2015 I went back to the ENT because I was still having sinus pressure, headaches, and then the migraines. He wasn’t sure what else to do for me, and decided on testing me for food sensitivities. I had a lot of foods show up as positive reactions on that test, so I had some major diet changes which did help. It still didn’t “fix” all the issues I was dealing with, but I felt a lot better off of certain foods and knowing about the food sensitivities did explain the stomach issues and abdominal pain that I had previously had. In the winter/spring of 2015 was when I started going to specialists (neurologists) for migraine.
I went through the usual treatments that neurologists do for migraines: nerve block injections, preventative meds, diet changes, abortive meds for when a migraine was starting, brain and neck MRI’s to rule out anything serious…but nothing really helped and no problems showed on the imaging. None of the preventatives worked and the side effects just made me more miserable. So we started Botox for migraine. I had heard a lot of good reports about how well Botox works for headaches and migraines, and I had high hopes for it—but I failed that too. After the 3rd treatment didn’t help and we had given it a fair try, we discontinued Botox. I did get Botox for TMJ a few times and that did help the residual muscle pain in my jaw a little, but didn’t seem to impact the headaches. Meanwhile, in the summer of 2015, my ENT sent me to someone who specializes in Lyme and chronic illness to get tested for Lyme disease since he couldn’t figure out why I was still having sinus congestion, plus neck pain and headaches. (The sinus surgery was worth it—it did help my sinus and breathing problems a good bit, but still was only a piece of the puzzle—not the cure.) I started seeing the Lyme specialist later that summer and she started me on the Cowden Support Program, which I stayed on for 6 months. It did help some of my issues—things were going well with my jaw and sinuses and quite a few other problems that we thought were Lyme-related, but I was having terrible migraines. I had intense headaches literally all of the time, which were getting worse, and then frequent migraines that were totally debilitating. I spent hours and days in my bedroom with the light and noise blocked out as much as possible, sometimes just praying to die. I wasn’t depressed or suicidal, but it was hard to see beyond the present pain. I wondered, if this was all my life was going to be, then why was I even here. It was what I consider the epitome of misery. The neurologist that was treating me for migraine didn’t know what else to do for me. (Eventually I tried and failed all seven of the triptans and a lot of the common preventative meds.) He suggested trying more preventative meds (which he didn’t feel too optimistic about since nothing helped so far), or if I didn’t want to do that, then to go to an out-of-state headache clinic. I didn’t really want to do that either…I was so tired of going from doctor to doctor. I had heard about this surgeon up in Bangor, Maine who seemed to be really successful at surgically treating patients who had severe migraine. I really wanted a permanent “fix”, not just management of my condition, and I figured another surgery would be worth it if it actually helped my migraines. I had gotten my hopes up so many times, but maybe this would really be the answer. I asked the neurologist about this surgery, and he had never heard of it; but thought it might be good for me to have a consult with this doctor and see if he thought he could help me, so I got a referral.
In December 2015 I had a consult with this surgeon. He’s actually a plastic surgeon and one of the pioneers in migraine surgery. My visit with him turned out to be an excellent appointment. I had waited awhile to see him and had a long list of questions. He gave me his full attention for a long time and had good answers for my many questions. I learned so much about migraine surgery, and he had good explanations and put my mind at ease for all of the things I had concerns about. To my delight, he said he thought I was a good candidate for surgery. By this point, I was willing to do whatever it took to get my life back, even if it was surgery. The surgery was nerve decompression. Basically the goal is to take pressure off your nerves. They do that by removing muscle from around the nerves above the eyes (the incision is in the eyelid crease and well hidden) and surrounding the nerves with fat to cushion them. They also do the same type of thing, taking pressure off the nerves, at the back of the head just above the hairline. For headaches in the temples, they remove a small nerve on each side. The incision for that is in the hair too. And finally, they also do nasal surgery – it’s somewhat similar to sinus surgery, but they focus more on eliminating nerve irritation, rather than sinus drainage like ENT’s do in sinus surgery. Since my migraines were so bad and my pain so widespread, I decided to get the whole works all done at once. I figured I had put up with so much already, I could endure this too. After consulting with him, I decided to have the surgery done and we started the long process of trying to get insurance approval. We waited a long time trying to get coverage and did the first and second level appeals but it was denied every time. It seemed impossible to me (I certainly couldn’t afford it!), but we kept praying. I go to a wonderful church and the people there really wanted me to get better, and we got enough gifts that the entire cost of the surgery was covered! We were able to pay and get it scheduled. It was so amazing and overwhelming. All the love and support was so refreshing and encouraging, especially after the past difficult years. I was able to have the surgery in May of 2016. It took 7 1/2 hours, but I was still able to come home that night. Even though my head was quite sore from surgery, and I looked rough, I could tell a difference almost right away. I was kind of afraid that even if I had some relief at first, it would just be temporary since migraines can be cyclical–but it proved to be more than just a temporary good spell! My head was partially numb and very sore for awhile, but after six months most of my feeling was back, and now at a year I have pretty much normal sensation. I am 100% migraine free! It’s such an answer to prayer and feels like a miracle. I saw the surgeon last month for my one-year follow up and I got an excellent report! I healed incredibly well, and I truly feel like a different person than before the surgery. My scars are nearly invisible—you can hardly even see them if you look for them—and I often hear from people how different and how much better I look. The surgery didn’t really change my looks, but it changed the chronic debilitating pain and the relief of pain shows in my face. Now I still get some headaches, but they are not as frequent or severe as before, and I’m not getting any of the horrible migraines, which is a huge change. If I get headaches now, they are usually caused by a tight neck (I also have scoliosis, but an adjustment usually relieves my neck) or lack of sleep; and they are minor compared to what I used to live with. It was such a wonderful experience to have my life change that fast! It put a lot of joy into doing “little” things—such as going outside in the sun, or spending time with my family—to be able to do them without migraines. Being so sick and then recovering makes you very thankful; and I try not to take feeling well for granted. I thank God every day. This is my story—thanks for reading. To all those that are suffering: hang in there, there is hope.
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