My Background

12:12 AM chronicmigraineellie 0 Comments

I realize that I should probably talk about my story so that you all have background when reading my posts.
I got my first migraine the spring of 9th grade, almost 3 1/2 years ago. At that time, I was an episodic migraineur, meaning that I was having less than 15 migraine days a month. At this point in my life, my migraines did not impact my life. However, the next spring, my 10th grade year, my migraines started becoming more impactful. I saw a neurologist who prescribed me Imitrex and Cambia. I could still function, but I was having memory and word-finding problems. I had to stop playing soccer because my migraines messed up my training schedule and my ability to be a part of the team.

My migraines escalated in my junior year. I was diagnosed with chronic intractable migraines, meaning that I was having more than 15 migraine days a month that did not respond to medication. I was then diagnosed with status migranosa (migraines that don't stop and continue for at least 72 hours) and stopped going to school for 3 months and I actually lost all memory of that time period. I had significant neurological damage during and after my migraines. At this point, I was prescribed different medications like Elavil, Propanalol ( which gave me bronchial spasms), the sister drug to Propanalol, beta-1 selective blockers (which slowed my heart rate down too much) and a couple other drugs that I forgot. I was also shuttled around to 4 different doctors, who mostly prescribed a different medication and shrugged their shoulders and said that they couldn't do anything. Finally, I found a doctor who was willing to take my case. In our first meeting, he said "I'm going to give you your life back." Hearing those words gave me confidence that he could, and he has. He figured out that I had both hormonal and non-hormonal migraines, something which other doctors struggled to figure out. I was already on birth control from the previous year to combat the menstrual migraines, but he prescribed me Topomax as well as Maxalt as prophylactic and abortive drugs. I was also put on an NSAID called Indomethacin/Indocin, which I fondly refer to as an "industrial strength" pain reliever. He also used IV DHE (dihydroergotemine,) which literally saved my life and allowed me to get almost instant relief. I was also taken to a rheumatologist who did full panels, and thought it was lupus for a brief time, but ultimately came up with no answers. For that time, I was becoming more stable and was able to finish my schoolwork and continue to catch up over the summer.

My senior year, this past year,  I was very stable from August to November, until I started to deteriorate and "snowball" into multiple migraines a week. My doctor started playing with my medications, and put me on a higher dose of Topomax as well as an anti-alzheimer drug called Namenda. Andy Charles at UCLA had done a small study using Namenda in migraine patients, but I was one of the first non-trial patients to be put on it. This was another miracle drug, and helped my cognitive neurological problems that came with the migraines. However, I did lose my ability to read and write as well as worse focusing problems than the year before. I stopped going to school for about a month, and I had energy issues, with constant fatigue and problems having energy after simple tasks like making myself breakfast. By this time in my illness, I had gone through 2 EKGs, 2 MRIs, multiple blood panels and one ER hospitalization. My doctor talked about how I may have to travel to go see other doctors nationally, but thankfully it never got to that point. I had been having side effects from the Topomax, and after trying Adderall for 2 days with terrible side effects, I was taken off almost everything except the Namenda and Topomax, as well as triptans. I had been using Sumavil Dosepro as well as Maxalt and Relpax. We figured out that I was having rebound headaches from the triptans, and I was prescribed DHE 45, the intramuscular version of DHE as well as other pain-relievers. I started to get better, and we added more supplements and another med to try and find the right cocktail. Luckily, this was the last time that we had to do that. I am currently on Nortiptylene, Migrelief, Centrum Silver, Namenda and birth control. For abortive medications, I'm on the Indomethacin and DHE nasal spray, which is so much easier than self-injecting or getting someone else to inject the DHE 45.

Surprisingly, allergies are a main cause of my migraines. We had absolutely no idea until about two months ago when I got skin-testing. I am extremely allergic to tree pollens, which correlated with the tree season in Los Angeles and when my migraines were at their worst. Currently, I'm undergoing immunotherapy and feeling so much better. I still get triggered, but my migraines are much lower on the pain scale and I don't have the same cognitive issues.

While I know that this is not the end of my journey, I'm so thankful that I've found the right solutions to give me stability at the moment.
TLDR; I've gone through a lot, and I figured that some people might benefit from knowing the medications I've been on and my experiences.