Sick and tired of being sick
by Erin C
(Washington State )
I have had migraines as long as I can remember, which is almost 20 years now. When I was younger (5-10) I would start the migraine by getting a very upset stomach, sometimes vomit, and then end up with a horrible migraine that would last days.
I was finally diagnosed by my pediatrician at the age of 12 with migraines. I was treated by simple naproxen. I don't remember any extreme episodes until later on. Skip forward a few years, and my migraines came back with a fury. I was seen by a neurologist who confirmed the migraine diagnosis and put me on maxalt and anti nausea meds as needed.
My migraines went on another hiatus until I started birth control at the age of 17. I was hospitalized about 30 times between 17 and now 25. Last year I visited a naturopathic doctor who suggested birth control was a cause of my awful migraines, so I stopped them immediately.
I have since tried oxygen therapy, acupuncture, massage, chiropractic, supplements, food diaries, stretching, exercise, and excluding caffeine and alcohol from my diet.
6 months ago when I was at the ER again for an episode, I was given a spinal tap to rule out meningitis. My MRI, cat scan, and other tests also came out normal.
The current migraines that I experience start with an aura of sparkling lights in my vision, and about 3 hours later the symptoms start. My left eye swells up, waters, and has discharge similar to pink eye. I always get very very nauseated and vomit so much I end up not being able to keep any medication down.I end up not being able to hold down any fluids,food, or meds. My neck becomes so tight that it radiates from my shoulders up to behind my ear and eye. It feels like it is up deep inside my skull with throbbing, radiating, and sharp pain.
It is so awful and unbearable that I cant move my body, form a sentence, or even tell my family that I need help. It is hard for my family and friends to understand how something can be so debilitating, as they have never experienced a migraine.
I have lost jobs over employers not willing to put up with me calling in ill, or having to leave work because I absolutely could not work like that. And I don't blame them! Sometimes I am woken up from a deep sleep in the middle of the night with a full blown migraine without experiencing the aura.
When I go to the ER they treat me with 2 bags of fluid, benadryl, compazine, and demerol via IV. This always works. It has become a huge source of anxiety because I never know when one will happen, and I am terrified of being out of the house for fear that I will become ill while driving or in a place where I cant get home immediately. My neurologist doesn't think I should be on a preventative medication because I only get the migraines once or twice a month. 2 years prior I was put on elavil, verpamil, and topomax, none of which helped. I have been on every medication you could imagine, much too much to list. I was also diagnosed with TMJ and fibromyalgia in the past year.
I cant afford to be going to the ER once a month, and am hoping you could provide some insight into what you think is going on. I currently take imitrex, phenergan, clonazepam, gabapentine, and flexeril. Imitrex, phenergan, and clonazepam are only used as needed for the migraines. I also take religiously magnesium, b complex, multi vit., omega 3,6,9, coq10, and natural herbal migraine pill combining feverfew, butterbur (sp?), california poppy, kava kava, and willow bark. I stay away from migraine trigger foods. Is there anything else you think I could try, or any other treatments available? I don't want to have to live my entire life like this. Thank you.
Clearly you have a refractory case of migraine with aura that is a little atypical. It is a little unusual for a migraine to start 3 hours after the aura ends, however if neuroimaging (MRI and CT) are normal, we just call it atypical.
The criteria for daily prophylactic therapy is 1 or more disabling headaches per month or 2-3 headaches per week. A disabling headache is one that disrupts work or social activities and perhaps puts you in bed. Sounds like you right?
Here are the most commonly used headache medications. Just because one didn't work, is no reason not to try another. Avoid starting and stopping meds, give each therapy 90 days and if it is having even a small effect, raise the dose. Also, I am not sure if you have taken a TCA like Elavil combined with an anti-seizure med like the topamax. They really need to be together.
Recently we have been using Trazadone in place of amitryptiline with some success..also, did you ever get above 100mg on the Topamax? Many MDs make the mistake of not going to that dose. That is really our starting dose and most patients are between 200-600mg per day. If anxiety is an issue, ideally Depakote would be a good choice for you. Weight gain can happen on that drug but only 10% of the time. Besides, once you get to one mild headache a month the meds can be withdrawn.
For abortive treatment you really need an injectable Imitrex or Sumavel Dose Pro. Let's face it, if you are throwing up you can't absorb the meds and once you go beyond ONE hour without treatment you only have a 15% chance the medication will work. At that point you need IV (or injectable-they will work beyond one hour) and then you end up in the ER.
You are doing everything else right..food triggers, exercise and try to get regular sleep. Do not vary bed times by more than one hour.
I would advise you seek an opinion of a headache specialist. The is a list at the link provided and there is a center in Seattle.
Mary Kay Betz MS RPA-C