How I Arrived at Here
I have had (very) occasional clusters of migraine with aura since my adolescence, but with minor aura all of my life (lights and ringing without a headache, but not bad enough to render me non-functional like the headaches). As I got older they became somewhat more common, clusters once or twice a year usually triggered by sinusitis. I knew migraines ran in my family, including the lights and ringing in the ears. Everything was fairly typical. Except…several great aunts had what we thought were multiple TIAs (the so-called “mini-strokes”), but no sign of a cause (not horribly unusual). What was unusual about the events was the headache that frequently followed the TIA.
Fast forward to six years ago… I have a stroke (technically a TIA since I did not suffer brain damage, but I was left with a permanent neurological deficit in my face), followed by a series of TIAs. I don’t mean one or two events, but rather hundreds. Fortunately most of the events were very short lived, but there were several (something like 8, the time is rather blurry) major events. I spent approximately 8 – 10 weeks over the next year in the hospital due to these. We discovered that I had a hole in my heart with bi-directional flow – due to the nature of the hole I was sending micro-embolisms straight up to my brain. Everything looked clear cut to me, but some of the episodes were distinctly different. The majority of the episodes came and left with sharp boundaries and a clear progression, likely from the embolisms hitting the same spot. The “alternate” episodes had “fuzzy” boundaries and did not always follow the same progression (note that there is no mention of a headache). My neurosurgeon and cardiologist agreed that the majority of the events were caused by the hole (I responded to blood thinners) and closed the hole.
I went a year before another episode, this one following the “alternate” model. I spent the following year being an experiment for the neurologist I was seeing (a stroke specialist). I had enough after my neurologists response to a bad reaction to Topamax, and spoke with my neurosurgeon, he sent me to my current neurologist (a migraine specialist). With my medical history coupled with an episode during the appointment, she was able to diagnose me during my first visit – familial hemiplegic migraines.
My disease had a name. I did research and discovered that there were a range of medications that could help, immediately followed by the discovery that the “go to” class of abortives is contra-indicated for cardiac patients. My doctor discussed my treatment options with me, outlining the potential issues with the various options. She let me know that we were not going to follow her standard program due to the nature of my migraines (I was completely unable to function during an attack), and let me make an informed decision about what treatment plan we would use. I chose the recommended path – we went off label with Namenda for the aura, later adding Lamictal. She also worked with my neuro surgeon to get me relief from issues in my neck (hoping to get rid of possible triggers, pain and poor sleep).
The medications helped but the frequency and intensity were still increasing, albeit from a new lower value (actually a good thing). I became chronic again (I never really stopped having the migraines, they were just knocked way down in intensity), with the episodes again becoming debilitating. I then tried Botox. Dear me, I only had any noticeable symptoms a week or two before my next round was due (every 12 weeks). After the second round, the same thing. Third round the same thing, except what broke through was more intense. After that the symptoms never quite went away, slowly getting worse. At my worst I am comatose and paralyzed, usually incoherent and unable to assist in my own care. I seem to have stabilized for the most part, but the frequency of bad episodes led to my doctor recommending inpatient treatment since we are at the limit for what she is comfortable doing outpatient.
The inpatient clinic I visited resulted in treatment for a symptoms I don’t have, namely the headache. The PA at the clinic (no, I won’t name them, too many people have been helped tremendously) did not actually listen to me during the initial interview. As a result my entire treatment regimen utilized drugs that had little to no chance of helping. The one that might have worked, depakote, failed miserably. I continued to take it for several months after my stay. The dizziness and vertigo seemed to be getting both more frequent and more intense, resulting in several falls and even bouts of motion sickness (I swear the bathroom floor was moving like a ship in a hurricane). Turns out that dizziness is a common side effect of depakote. Going through the paperwork from the clinic I noted that the PA’s note did not mention the vertigo and dizziness (although the nurses reports made frequent mention of them). I have since stopped the depakote and the dizziness has dropped back down, although the vertigo is same. The inpatient stay did lead to the discovery that my migraines worsen when my blood sugar is unstable.
Since the inpatient stay I have made some behaviour changes. First, I discovered TheraSpecs. Wearing them outdoors and at work (using the indoor ones for at work) has helped tremendously. I have fewer bad episodes than before using the glasses. I have maintained better control of my blood sugar levels. I have also begun tracking my symptoms closer. I came to the realization that my wife and daughter were not exaggerating about the frequency and intensity of my symptoms. I have migraine symptoms that affect me daily, I have not gone without symptoms below a level that affects my behaviour for more than an hour in 48+ days. I am so grateful that I do not get the headache pain with these migraines (I have not had a migraine with headache in over three years). My aunt (who always has the headache phase following low intensity hemiplegic symptoms) has now had three migraine episodes that looked like full blown TIAs, all without headache. My neurologist has several patients with hemiplegic migraines (both familial and sporadic), my aunt’s doctor has only seen them in my aunt.
Thank you all for being here, and letting me vent.