Worse possible day
So today was my long awaited appointment. 26 months to see a headache specialist in Calgary, AB. We are suppose to have one of the top headache clinics in North America - a group of psychologists, nutritionist, nurses and doctors that specialize in headache disorders.
Well I went in, answered the questions "yes I have tried lots of meds - inderal, topomax, cymbalta, and currently on vaporic acid, tramadol ER, zofran and evail", no I do not take my treatment meds (imitrex, baclofen, ketorolac) more than 10-15 days a month and never have. Yes I have tried Botox, cannabis oil, Chiro, acupuncture, massage, psyisotherpy, reflexology, craniosacral, healing touch.
And his response ...... well, you sure have tried almost all of the meds we can throw at migraines. Great, you REALLY don't know what you are talking about Doctor. What do I do about my severe pain flares? If I'm over my med limit and don't take anything, it keeps getting worse and then doesn't even respond to the meds when I end up in urgent care and they give up and send me home. He had no answers to that other than don't take your meds too often or you will get rebound. I KNOW THAT .... BUT I NEED OPTIONS on those days otherwise I will someday end up hit myself with a hammer just to get it to stop.
I have already tried a general neurologist as well you basically asks how the pain has been since the last time - no improvement - okay up your meds a tiny bit and see you in 6 months.
Since it's Alberta and all our health care is linked together I don't have an option to find another doctor and get another option. Travelling down to the states also isn't an option because I am completely broke now for fighting this daily pain for the past two years. I really don't know what to do now. I haven't had a pain free moment in over 2 years and the last time it was under a 4/10 was probably 3-4 months ago.
Hi Tamara,
I'm sorry your appointment was so disappointing. I understand how debilitating, exhausting and frustrating 24/7 chronic pain is having experienced it for the last 20 years or so - it's life altering.
I'm now seeing my 6th board certified migraine/headache expert and think I my be finally getting somewhere. I started Botox in August and it I feel like every other round is helpful, but currently seem to be stuck in a migraine cycle. It's so important to have a trained doctor (trained to inject Botox for migraine) to do Botox injections. The protocol for migraine is 31 different sites. Do you recall if that is what you had?
I know it may feel like you have tried everything out there for migraine prevention, but that may not be the case. There are over 100 medications that can be used to treat migraine. It would take close to 25 years to try all these medications and combinations at the correct dose before we find the one that works. I'm not sure if that's frustrating or encouraging! Let me share with you our information on migraine prevention; https://migraine.com/blog/migraine-preventives-start/ and this is a new article that describes migraine prevention beautifully; https://migraine.com/living-migraine/whack-a-mole-chasing-freedom-from-pain.
Even though Botox for the most part seems to be helping, I still try to be vigilant about my migraine triggers. Unfortunately they seem to change from time to time. If you haven't been able to identify what your migraine triggers are you may want to keep a detailed migraine diary for a few months. Doing so was very helpful in determining what my son's were when we kept one for him. Common triggers include certain foods, interrupted sleep patterns, skipping meals, dehydration, sounds, smells, lights and many others. Unavoidable triggers include fluctuating hormones and changes in the barometric pressure. https://migraine.com/blog/keeping-migraine-diary-basics/.
Something else you may want to think about are 'stackable' triggers and goes like this; if we are exposed to one of our triggers, say fluorescent lighting, we may not have an attack. But if we encounter more than one trigger such as an irregular sleep schedule, skipping a meal, eating a trigger food and/or getting dehydrated, an attack may ensue. Continue reading more about stackable triggers in this link; http://migraine.com/blog/the-riskiness-of-stacking-triggers/.
I'm not sure if you've seen these sites but I wanted to share them with you. I don't know anything about them but they may have other Canadian resources for you; http://www.headache-help.org/ and http://www.migrainecanada.org/
Hang in there and try not to lost hope - we're here for you!
Nancy
