Trifecta of Frustration
Hi Everyone,
I am new to this site, but like so many migrainers, I'm not new to pain. My frustration doesn't just include migraines unfortunately (if one can even say that having migraines isn't bad enough). About 5 years ago we found out that I have a tumor around my pituitary gland that was about an inch and a half in diameter. It pretty much messed up my life for years without me knowing what was happening. After about two solid months of headaches, my doctor recommended an MRI which is how we discovered the tumor. Anyway, I now take Cabergoline once a week to control my prolactin levels.
Now I managed to go for about two years without that many serious headaches and my tumor shrank, and I even lost 50 pounds! I used to tell people I was the luckiest person they would ever meet because I got to start my life over again. My personality changed after treatment. I became bolder and more confident. I had energy for the first time in years. It was amazing…..
Until the headaches started again. Now I have had headaches my entire life. Since I can remember it was just something I dealt with on a weekly/daily basis. Most of the time they were mild, I guess. Sometimes they sent me to bed. I thought they were sinus headaches. I didn't get the vomit inducing fearsome pain of a migraine attack until college. I had a medium gauge headache (something I was used to) and I didn't take a pain reliever for it fast enough. One margarita and an X-Men movie later and I was throwing up on the side of a road. Since then I have had many more attacks, most of which do not cause me to vomit, but I do get extremely nauseous. About a year ago I started getting daily headaches/migraines. My doctor sent me to a neurologist who instantly said I have chronic migraines. He prescribed Zonisamide.
My last, and possibly most annoying medical issue is something that like the migraines I have dealt with my whole life but didn't know what it was. About a year ago my doctor diagnosed me with orthostatic hypotension. Basically I get dizzy, a lot. I remember this being a problem as a child. I used to black out in hot showers. I blacked out while standing in a warm church where there weren't enough seats. I have trouble walking around malls or museums without being able to sit down every once in a while. And it turns out both of the medications I take make this worse. In the past year, both the migraines and hypotension have gotten significantly worse. I am 32, almost 33. I finally thought I got my life back. I completed my masters and thought I was headed towards a career. But now every once in a while my body shuts down. Stress is a player for sure. At my grandfather's funeral this past weekend my boyfriend had to rush me home because the migraine I woke up with exploded while sitting in the ceremony. I couldn't breathe, couldn't see straight, and all I could do was cry.
I can’t seem to get any answers as to why I get migraines or what causes the hypotension. I know the two problems make each other worse. I know I have some triggers for the migraines, but I often just wake up with them. As for the tumor, we didn’t catch it in time and it is still too big for surgery. We don’t think it will shrink any more so I am stuck with the meds. I have a really high pain tolerance, as I suspect most of you do too, so honestly it’s not the pain that bothers me. It’s when all my other weaknesses attack me at the same time. I just wish I could find a solution to the problem. And I don’t consider medication a solution.
Sorry for such a long post.
Katie
Hi Katie,
Thank you for sharing your story with us. Never worry about the length of posts, that's why we are here!
Life sounds like it's been a bit rough recently. I am so sorry to hear about your grandfather, that certainly contributes to our stress levels.
First let me talk about migraine and cause. Migraine is a genetic neurological brain disorder, the exact cause of which we don't totally understand. Most people with migraine have overly sensitive brains and as such when we come into contact with certain stimuli, or triggers, an attack may occur. Here is a quote from an article Dr. Young (world class migraine expert) wrote about the cause of migraine; "Migraine is a serious brain condition caused by things going wrong in the brain and pain nerves. The cause is complicated, argued about, and worth spending hundreds of millions of dollars to understand better." You can read the rest of his article here; https://migraine.com/blog/argh-trigger-is-not-cause-dont-let-them-get-away-with-it.
If we can identify and manage our triggers, we may be able to reduce our attacks frequency and severity. The best way to do this is to keep a detailed migraine diary for a few months. In fact most migraine/headache experts ask their patients to do this. We have information on keeping a diary here; https://migraine.com/blog/keeping-migraine-diary-basics.
When we have additional diagnoses, treating migraine can become more complicated, I know this from experience! Does the doctor know the cause of the orthostatic hypotension? Is it related to the tumor? In my opinion (which is not medical advice) knowing what is causing orthostatic hypotension will help in treatment. If you aren't getting any answers from your current medical team, it may be time to find another.
I'll stop now before I overwhelm you. Let me know how you are doing,
NancyHi Nancy,
Thank you for your advice! None of my doctors have been able to tell me much about the hypotension. In fact, although I have described the symptoms for a number of years to different doctors, this past year was the FIRST time one of them actually had an answer! However her only suggestion was to take medication . . . which I just don't think is a good enough answer. I had my heart checked and the results were perfect. According to all the tests I am really healthy. My blood work is awesome and my MRI's show nothing but the tumor (which is good according to my neurologist). So the only problem is that I feel horrible most days. Today was in fact the first day I woke up this week without pain in my head or this overwhelming fogginess that led to pain. Luckily I work from home and I am currently trying to start a business . . . I have no idea how I would be able to handle a standard 9-5 job.
Just as you suggested, I am actually in the process of finding an alternative endocrinologist. I am also moving up my next migraine appointment because the headaches seem to be coming on more frequently. I am also trying to change my lifestyle to be healthier. Clean eating, staying hydrated, exercising, etc. I even tried going back to yoga (something I was seriously dedicated to a few years ago before the headaches got really bad), but that was a big fail. The constant ups and downs in one vinyasa yoga class and I had to leave because it triggered a migraine. Talk about a bummer - I used to love yoga. Now I'm afraid of it - and I just started a gym membership for the sole purpose of taking classes!
Anyway, I feel as though all these issues have to be connected. So I am going to push harder on my doctors for more information. I am determined to take my life back.
Katie
