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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (3)
  • Douglas author
    3 years ago

    If you haven’t read this yet, there is a post explaining what I meant to ask you: https://migraine.com/blog/why-we-ask-about-your-doctor/

  • Jessiedances
    3 years ago

    Wow! Thank you for sharing your story. I am new here as of today. My dear love of my life and partner found the book The Migraine Brain. I literally could not put it down and have highlights and sticky notes all over it. I have suffered with migraines since I was in Jr high school. Horrible painful throbbing migraines usually lasting three days and then clustering and going away. I have had to go to the ER in the past and was given Demerol and Phenergan in the early 80’s. I have been labeled drug seeking, get over it you can’t be having that many migraines. My fault my pain and I gave up no more doctors. I only take OTC one by one no longer working. Over the years my Migraines have changed. I now get them at night it is like electrical charges going all over in my head. Like one of those globes that you touch and the elctrical little guys go all over the place. The wake me from sleep and when I lift my head full blown Migraine. This goes on for days the one in January lasted 21 days all night and Migraine all day. I have lived with them so long that I don’t miss work unless the vomiting starts and even then I will go to work. No one believes me no one understands and my poor guy just holds me while I rock my self and weep with pain. January I drove myself to the hospital vomiting I don’t know how I got there. They told me to have a seat. No basin, I practically crawled to the public restroom to vomit my guts out. A nurse saw me in Gary’s arms and got a wheel chair, he said you don’t belong out here. We don’t have a bed however we are going to stop the vomiting. I couldn’t breath my throat was swelling form now dry heaving. I was given 8mg of something and almost immediately stopped vomiting. The pain so intense. I just got to a room when a code was called and left alone with my BP dropping and oxygen dropping and alarms going off. Gary was frantic I told him to take it all off of me. He went and found help I was put on oxygen and then migraine cocktail that was three hours later, I started vomiting again and then two hours later the doctor came in still in severe pain was given morphine. Sent home and missing a day of work. May 31 days of pain, this time no vomiting just nausea. This time CT scan all normal morphine given and sent home. I told Gary now you know why I don’t go. They label you as drug seeking give you the shot and send you home. My doctor bless her placed me on Nortriptyline 10 mg at bed time and Imetrex if I have a migraine again when I wake. She told me to take one when I got the perscription filled. Big mistake I had the worse reaction to it. She told me to take the Nortriptyline and then the Excedrin Migaine formula and did a Pulse ox test at home. My oxygen was dropping to the low 70’s to mid 80’s I am now on oxygen therapy at night. I am not having any relief we increased the Nortriptyline to 25 mg and I had serious reaction to it and weaned down to the 10 mg again. I had 11 days pain free and am now back to working with the pain. When I am dizzy or nauseated I sit in my car and pray to make it thru my visit with my patient. Nothing is working and I am so tired,

  • Douglas author
    3 years ago

    I am so sorry you suffer like that. I cannot imagine what It is like to have that much pain for so long. My heart goes out to you.

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