Migraine Awareness Month #23: “I Drank the Kool-Aid!”
“We all try things out of desperation, even when our common sense is telling us they’re not going to do anything. Share your experience with this”
I have to say that I really haven’t tried that many off-the-wall Migraine Cure-Alls. In fact, other than the Botox shots and acupuncture (which are great treatments – for other things), I have stayed pretty much on the straight-and-narrow as far as Migraine therapies.
Not that I haven’t been desperate: I have and I am. I have a feeling that if I felt bad enough – which is a definite possibility these days – I might consider snake oil, blood-letting – maybe even the dreaded “Brain Transplant” (no, I don’t think they’ve started doing this… yet!). What I have done to treat my ever-invasive Migraines is very traditional, completely mainstream and highly acceptable… for other people. I’ll explain:
I’ve seen – doctors. Yeah, I said it – doctors. I’ve seen doctors, so-called “Headache Specialists” (was “dropped” by this one), therapists and probably witch doctors (can’t remember, but I’m sure that there must have been one of them in that group somewhere). None have helped me – at all. Period.
Now I’m not trying to be negative and I apologize in advance to the good docs out there – I know they exist, and I tip my hat to them. I’m just saying that “I” haven’t been lucky to have located or seen one yet. In fact, I’ve actually lost some ground, both emotionally as well as physically because of the “doctors” that I’ve been unlucky enough to have come across. I gave it my best effort, I really did. Here’s some of the “treatment” I’ve received (beginning with the WORST):
- My first Neuro – that I’d seen for almost 10 years – did the most damage. I always had the feeling that he was afflicted with the same stigma and misunderstanding that many in the general public have. I just never had the occasion to be able to prove it – until last year during (I should correctly say, “one day before”…) my disability hearing. I got a phone call from my attorney asking if my doctor would have any reason to “dislike me”. I explained to her that over the years this doctor seemed to be more and more “odd” towards me, later labeling me as The Migraine Type: “with high arches, a tendency towards emotionalism and fibromyalgia, and a thin build with a high-strung nature” In a nut-shell, as they say, I told her that yes, I really didn’t think he liked me at all. He was always angry that I wouldn’t (“couldn’t” to be more to the point) take many of the preventive meds that he prescribed for me and he’d actually called in antibiotics and Ritalin for me during a particularly bad Migraine “patch” in 2008. I later found out that almost all the preventatives he’d prescribed for me were started at dosages much higher than normal: When I’d first tried Topamax in 2002, this “doctor” started me at 100 mg, ramping to 200 mg within the next week. Needless to say, I failed at trying many of the prescriptions this doctor started me on. Some of this doctor’s other “Kool-Aid’s”:
On my disability report, this doc left statements that I was trying to receive “secondary gain”; “didn’t want to work now that I was married”; “and was trying to cheat the system and wasn’t sick at all”. Combined with his statements and a few other mistakes that the attorney failed to notice, I lost the chance at disability on that go-round and my self-esteem and piece of mind in the process.
In another astounding feat, this unamed doctor called me, leaving two very crazy voicemail messages on my cell phone (I’d never given him this number???). He rambled about losing his house, “how he could help me out in my disability” (that I’d already lost, “Thank-you very much”) how I probably shared some of his medical problems (I no longer recall “that one”), and how he’d had pneumonia three times that year. All this was recorded while he giggled, called himself “Mr. B” and ran out the recording, still rambling.
- Additional “doc faux paus” included another neuro (my 4th or 5th, I think) stating on a report to my family doctor that she “didn’t think I was that sick”. Before I found her words in that report, I’d actually believed that we’d had a good repor. Now that I look back, I remember her denying me a different triptan on a Friday (the office was closed on the weekend and I’d had another bad series of Migraines that I couldn’t get to break) because she said that “it won’t work, either”. The nurse later said that this doctor wouldn’t call in anything for the long weekend ahead. I did later turn these actions in to the office manager, and I’m sure this was the reason behind this doctor’s “Kool-Aid” of denying me any pain medicines for an entire weekend. This too, took away a lot of my belief in myself: I had never been a problem patient; seen this doc on all her requested appointment schedules (three times that year); never took narcotics, and was not in the habit of asking for additional pain meds. I was floored.
- Not the last “Kool-Aid”, but another important one: The one actual (but I found out later, “not really”) “headache specialist” dropped me as a patient after a conversation with office staff. I had originally believed that this office person was a nurse; I did find out later that the “specialist” had given his office help the additional responsibility of changing, dispensing and controlling the dosages of some pretty tough medicines. When I asked the “nurse” whether I should increase or decrease my Lamictal in response to side effects I was having (I also wasn’t noticing any changes in my Migraines) she told me I could do either (REALLY???). When I pointed out that I should probably talk to the doctor about that, she said, “you can take as much as you think you should, or you can lower the dose if you think that may help”. I found out later that, “they didn’t believe they could help me”. Another chunk of my already damaged self-worth and belief in myself.
What I remember most about these incidences as well as the others I haven’t mentioned is that I didn’t really understand stigma and wasn’t connected to any Migraine support during that time. I really began to believe that maybe I was just hysterical, goofy, or just too sensitive and maybe even a hypochondriac. Although I’d had some Migraine education, being exposed to these doctors made me begin to doubt myself – even in the face of all this pain. My depression – which was always fairly consistent and stubborn – escalated as much as my Migraines were. Hopelessness and desperation made me want to just disappear. I was already drinking the Kool-Aid, and I didn’t even know it.
I think back on those experiences as I now write this and I worry so much and feel so bad for the other Migraineurs like me who are feeling the same pain, the same stigma, and the same doubts because of these doctors and others like them. It shouldn’t be right that a “professional” can do this to a patient: take away their power, self-esteem, and very belief in themself, making them drink the Kool-Aid while not even realizing it…
National Migraine Awareness is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com “
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