I’ve Definitely Got To Get a New Doctor…

By lana

5 min read

Hi, my name is Lana and I live in Yellowknife, Northwest Territories, Canada. The reason I mention this is because we are a couple thousand miles from the nearest large center with a Neurologist or Neurosurgeon (a 1.5 - 2 hour flight by Medevac). This will be important later in my story. I have had migraines with aura since the age of five, the first one I remember was in Kindergarten the day my parents were coming to school to tell my teachers that they were getting a divorce. I was only officially "diagnosed" at the age of thirteen, after 8 years of regularly suffering for days with pain, taking Aspirin or Bufferin in vain, then going to the Emergency Room, only to have the ER Doc tell me to go home and take some Aspirin! (after I had told him I had already taken a bottle's worth in the past few days). At that time I lived in Saskatchewan (Regina). When I was finally diagnosed, the Emergency Docs would give me a shot of Demerol, I would go home and sleep for 15 hours and then the headache would go away. I did a lot of research and learned about migraine triggers - at one point when I was young I thought my Grandma gave me headaches, because every time I went to her house I ended up with a migraine! I later realized it was because she had diet everything - diet pop, diet gum, etc, and artificial sweetener is one of my triggers!!

Unfortunately, as I get older, my headaches have become worse and last longer. Last year they got to the point where I was having 2-3 per week, but as long as they only came after I woke up, I could keep them at a reasonable level and still work if I took one Oxycocet tablet every 4 hours (but most of the time one gets me through the day). Unfortunately, I have a Doctor who I have to fight with to get pain medication and definitely has no clue about migraine. She keeps saying I shouldn't be taking Oxycocet and I say I have to or I can't work, and I asked her what she would prefer I take. She looked me right in the eye and said "Advil." I couldn't believe it! I told her "I could take a whole bottle of Advil, and I would die, but I would die with a Migraine." I used to be on Propranolol prophylactically but that stopped working, so I was put on Topamax, which, unfortunately, has also now stopped working. If I wake up and already have the migraine I'm sunk, because my vision goes, and I have to go to Emerg. for treatment - I usually end up being there for at lease 6-8 hours before they let me go home. I used to get shots of Chlorpromazine, which would knock me out for the better part of 2 days, and I would wake up migraine free, and more recently I was able to take Chlorpromazine tablets at home with pretty much the same effect, but it has stopped working as well now.

I have tried DHE, but it made me violently ill, and Imitrex gave me chest pain, so I can't use those, and my doctor doesn't really know what to do now. On June 28th this year I got a migraine and it ended up lasting until August 6th! I was even Hospitalized for 6 days, during which they tried Steroids, Morphine, and even loading me up with Z0fran and Gravol and giving me DHE, but nothing would break the headache. It ended up lasting 40 days, and on that day I went in to the ER and the doctor tried lots of Gravol and DHE again, which made me quite sick, but the migraine finally went away.

In the midst of all of this they did a CT scan and discovered that I have had two silent lacunar (deep) strokes, probably from migraines. I went back to work and my migraines went back to 2 or 3 a week. While the long migraine was going on they had asked me whether there was any history of aneurysm in my family and I said that I had found out that my estranged father had died from a massive brain bleed at the brainstem, but I wasn't sure whether it was an aneurysm or not. They said I needed to get a CT Angiogram just to be safe, because aneurysms can be genetic. I had the CTA on November 9th, and, lucky me, I hit the jackpot. I have a cerebral aneurysm in my right frontal lobe. Oh, and I'm in the midst of another status migrainous - I've had this one since November 24th with not letup. I am having brain surgery now on February 22nd to clip my aneurysm (in Edmonton, which is the closest major center - we have no neurologists or neurosurgeons in Yellowknife) because I am not comfortable just watching it when I live 2 hours away by Medevac if it does rupture, and there is nothing they could do here. That's another thing about my doctor. The ER doctors are not comfortable treating my migraines with anything other than pain meds like morphine because they don't want to raise my blood pressure because of the aneurysm, but my doctor wants them to give me DHE, which makes me really sick, so it probably raises my blood pressure, right? Anyway, she keeps sending me to ER with notes and instructions for them to give me DHE, and they won't. Anyway, I said that I don't blame them and I'm glad they don't want to take the chance - she looked at me like I was nuts and said "are you really scared of that??" I said "of course, if it ruptures, there's nothing anybody here can do about it, and it's a good 2 hours before they can get me to Edmonton - if there's a plane available" She finally phoned the Neurosurgeon in Edmonton and got explicit instructions for what they should do and watch for when they give me the DHE, to make sure they are not putting me in danger of aneurysm rupture. So I've gone and gotten it once and it didn't work. Right now our weather is jumping up and down, so there's no point my going until it settles a bit (another one of my triggers), or it's just a waste of time.

Thankfully, the Neurologist who visits here regularly from Edmonton has said once I have the aneurysm taken care of he will work with me to find the right migraine meds for me so my migraines can be under control again. And guess what - he's not a Migraine Specialist, but, he's a Neurologist who suffers from Migraines, so I figure that's got to count for something! And I really have to get another family doctor, but we have so many locums come through here that only stay a short time, I want to find one that plans on staying a while. Anyway, that's my story!

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ellen Member
Lana, Congratulations on figuring out some of your triggers! You really should probably see a headache specialist. I do realize that where you live might make this impossible. The next best thing is probably a neuro who has Migraine himself. You found one - I'm so glad for you!! One thing I see from what you've written is that they are trying one drug in a class, then abandoning the entire class of medicines. You could actually be discarding medications that may be helpful to you. Especially the triptans - each one is very different from the next. Imitrex gave me tachycardia and my heart was beating around 200 bpm. I had chest pain, the whole nine yards. I was scared to death of the whole class of drugs, but my doctor wanted me to try another. I did, and it worked with no side effects (for me). Unfortunately I can't take triptans now because of other issues, but that was a huge illustration to me how drugs within a single class may be worlds apart from each other. Additionally, DHE is often given via IV over a period of several days. Have they tried that with you yet? What about IV Depakane and magnesium over 5 days? These are common treatments for status. It might be worth at least asking about anyway. Good luck with the surgery. I hope you'll let us know how it all goes. Watch that hospital food too, it may be full of triggers. I wrote an article a while back which might be helpful to you. It's called Migraine in a hospital setting - food http://bit.ly/e0nhaO
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Thank you for so bravely sharing your story. I have a status migraine right now...definitely cause for concern. I wish you well with your journey. Hoping for everyone's good health.
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Thank you for sharing your story... It is almost identical to mine....The weather is a big trigger for me also...I have been taking Valproic Acid Syrup,,,, It is the Generec of Epival....So far so good.. I still get them but not as severe and not everyday as I used to....I wish you all the best. for your journey to pain free days..& nights.
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Thank you for sharing your story. I have a headache every day and get migraines at least once a week. The pain is unbearable, I can't imagine having to deal with it for 40 days. I've been to the ER a lot in the past month. They give me a shot of dilauded and it usually takes the pain away, or at least makes it bearable! My neurologist told me the other day there's nothing she can do for me, all the meds we've tried don't work and she doesn't believe in giving out pain medication. My poor husband and daughter, whom I thank God for everyday, have to take care of me all the time because the pain is crippling...I'm totally useless! It is comforting to know I'm not alone and other people suffer with the same "disease" known as Migraine!
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Thanks for sharing your story! It helps to know we're not alone out here. I'm wondering what you do for work? And do they understand about the migraines? In all my years of migraines (27) I've found that bosses don't understand and think you can take an aspirin and get over it.
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I am glad they found a medical reason for your headaches.....Good luck to you and I hope that when they remove your aneurysm you can live a normal pain free life.