Complex migraine or…..more?!
Hello all, my name is Joe. I am 35 years old and after the strangest combination of random symptoms I have ever experienced, was recently diagnosed with having a complex migraine. I have had migraines before (within the past 5 years or so), but never anything quite like this. I’d really love feedback on my story as I am in the beginning stages of figuring out exactly what is going on with me and am feeling rather isolated with this condition. I am confident that there is some very valuable insight to be found within this site though! Thank you in advance for any help or advice! As for my story…
The first 35 years of my life have been boring….medically speaking. I hadn’t experienced even a migraine until roughly 5 years ago or so and beyond the occasional sinus infection, and seborrheic dermatitis and psoriasis, I have no allergies or other medical conditions.
I believe the start of my symptoms occurred about 2 months ago…over a month prior to my documented migraine attack. Prior to being diagnosed with a complex migraine, I really hadn’t had too many problems with migraines. I did get them, but they were always on the right side of my head, behind the eye…seemed more like from eye strain and stress from working with computers or playing video games. I could usually feel better after lying down for an hour, with an ice pack. I never had the full-blown, light sensitive, have to be in a dark room all day horror that other poor souls have had to live with.
Anyway, my apparent symptoms started when I had an achy (like a cold or flu achy) back one evening and some indigestion. The achy back disappeared overnight, but the indigestion lasted into the next day. Nothing too special, but still odd for me. Later that week though, I started to experience moderate, consistent bloating in my abdomen. Also, I found myself randomly burping throughout the week. Both were definitely not the norm for me. I have had no prior history of gastroenterology problems. By the end of the week, my jeans felt uncomfortable against my abdomen. I sought out my family doctor and his first suspicion was my gall bladder or gall stones. An ultrasound, ct scan, and eventually a HIDA scan (to check gall bladder function) would eventually rule this all out.
Meanwhile, I started having episodes where my body would shake like I had a chill. However, I wasn’t cold nor did I have a fever. But, a hot shower or sweatshirt would heat me up and relax my muscles and stop the shaking. The shaking fits could last up to 15 minutes. They were never what I would consider seizures or convulsions, just more like muscle trembling. All of these weird symptoms were lasting about a month, with no real definitive answers. I would notice body aches in various places that seemed to come and go. The only good news was that the bloating I had been experiencing appeared to resolve on its own. However, I started to have what appeared to be panic attacks. I had never experienced one before in my life and wasn’t prepared for just how frightening they can be.
About a week later is when everything finally came into bit more focus. I was still getting the various aches, and 5-10 minute long panic attacks, but now I was also getting tingling sensations up my left hand and arm, and in my left foot. Later that same morning, I felt a strong ache in the right side of my neck that radiated to my jaw. The weird thing about this pain was that it would be there for 5-10 minutes, then seem to go away, then come back in another 5-10 minutes! It wasn’t the consistent ache you would feel if you slept on your neck wrong the previous night.
Despite knowing that I am only 35 years old, slender/athletic, with no known cardiac issues…I was starting to think something was wrong with my heart, or I was going to have a stroke, or had a tumor, etc…
Well, the next morning I was at work and just wasn’t feeling right…I felt like I was having another panic attack. I walked over to a trusted co-worker and we started talking. I immediately realized something was wrong, as at the end of my sentences I was having difficulty forming certain words. I KNEW in general what I was trying to say, but it would either come out wrong or I couldn’t think of the word for it! I even started reading some papers he had on his desk out-loud and found to my horror that I couldn’t pronounce about 1-2 words in each sentence! Immediately STROKE was the first thing on my mind. I asked my co-worker to call 911 and I walked downstairs to the entrance. Luckily, I did not find myself paralyzed or my balance thrown off, but I did feel numbing tingles in both hands and my legs felt spongy walking down the stairs.
Upon the ambulance arriving, I started seeing the aura floating around my vision. A clear looking amoeba-like substance that while it didn’t block my vision, it made whatever it passed over appear blurry. In the ambulance I go and it was a 1/2 hour ride to the hospital. I felt pretty good during the trip, aside from the occasional speaking difficulty….that is, until we got close to the hospital. Then I felt the pain of the migraine starting behind my left temple/eye. It would turn out to last the rest of the day and be the worst migraine I had ever felt.
At the hospital, they followed stroke protocol, due to my symptoms. I was given some manual tests (pushing against their arms, touching my nose, smiling, etc…), which I did all fine. I was still just having the occasional speech problem and I couldn’t remember the name of our president…even though I obviously knew it was Barack Obama.
I was given a catscan, lots of bloodwork, and eventually an MRI. Everything came back clean. I was kept overnight and the next day I was given the diagnosis of a complex migraine, which supposedly invokes stroke-like symptoms. I was told to indefinitely take a baby aspirin daily and to follow-up with neurology in 3 weeks.
I was happy to have a diagnosis and things seemed better. However, the day after I was sent home…I broke out in the worst anxiety attacks I had encountered yet. I had about 3 attacks in total, but they lasted about 1-1/2 hours each! I was pacing around the house, my body shaking, with all these horrible thoughts running through my head. Thoughts that something was still wrong, I still didn’t feel right (the aches and tingles still were coming and going). My wife finally called the neurologist that diagnosed me. I was prescribed Xanax for the anxiety. My wife was told that a lot of times the complex migraine brings out the anxiety attacks. I had never encountered EITHER before and was unprepared for what was happening to me. After literally the worst day of my life, the Xanax appeared to have started to kick in.
That was a little over a week ago. I have had no further panic attacks. I also have had no more migraine head pain, speech difficulties, or visual auras. BUT, the random tingles in my body persist, as do the moving aches. Oh and at times it felt like the fillings in my teeth hurt (MRI after-affect?). My left hand and forearm tend to ache more-so than my right. Just a lot of weird, random pains. My pinky fingers have felt stiff, while my other fingers are fine (I work on a computer all day, so I am sensitive to this change). Sometimes my jaw aches a little. Oh, and perhaps weirdest of all…I will go to sleep feeling relatively ok, and wake up with my hand, arm, foot, and even my left cheek and nose feeling tingly! Never completely numb…if I touch the parts, I can feel them. Also, ever-so often I feel little muscles twitches like in my leg. Even my left eye has felt a little twitchy upon first waking up.
I’m really concerned that this one migraine event really short-circuited my whole nervous system…
I do not know if I am experiencing lingering affects of the migraine itself, or panic-attack type affects, and it feels like a which came first the chicken or the egg type scenario…did underlying stress and anxiety bring on the migraine or did the migraine bring out anxiety that I’ve never had before?
Do the tingles and aches ever go away? I really want to get off the Xanax, if I don’t need it, as I hear it is extremely addictive and that weaning off of it can be worse than trying to quit heroin! At this point, I take 0.5 mg, 3 times a day. That has been for one week so far. I have an appointment with my family doctor tomorrow and I will be discussing this. Though, he hasn’t been too helpful with the actual complex migraine part up to this point. I don’t meet with the neurologist for a few more weeks. I can try calling and seeing what he says. What about the rest of you?
I guess bottom line is, I am wondering…has anyone else experienced anxiety that they never had before alongside their first complex migraine? And, although I realize everyone is different, after a complex migraine is experienced, do they tend to repeat themselves more frequently? I do not know what my trigger was/is, but my 2 year old daughter has had medical issues since birth and although she is doing great now, she gave us quite the scare about 1-1/2 months ago, when she had a cyanotic, “death spell” in which she aspirated onto her one lung.
My greatest fear is this recurring with severe pain or paralysis! My sister recounted two occurrences when she was in her 20’s where she lost her words, saw the visual auras and her lips felt numb. But, she didn’t seem to have any residual numbness afterwards and I don’t believe the actual migraine pain. So, apparently it is somewhat hereditary for me.
Thanks again for any advice or useful info that you can share. This is the most uncertain and out of control my life has ever felt and it is at least comforting to know there is a forum of individuals who can understand the feelings I am experiencing.