Risky Business: Each time you try a new treatment you take a risk. How do you initiate a discussion with your doctor so you can make an educated decision about trying it as a team?
This topic amuses me to some extent. Because I am so passive when it comes to treatment. And in the past I assumed my doctors and neurologists would know how to handle the situation. I go in with a problem and it is their job to resolve those issues. However, it certainly does not work out that way does it? So maybe I’m an example of what people should not do rather than what they should do.
Like I had an adverse reaction to Imitrex shots (I have an adverse reaction to all triptans, but Imitrex was far worse). In this case it was the angina they were worried about. My doctor took me off it and would not put me on another triptan as a result. This is clearly the right choice. However, being a doctor she would not consider painkillers as an option and instead chose strong anti-inflamatories even though I have IBS-D and diarrhea as a symptom of migraines which might indicate to someone that I might not tolerate such medications on a regular basis, as in every migraine. So I was put on Toradol. Perhaps unsurprisingly it began to cause severe cramping pain and diarrhea. So she switched me to Arthrotec and same thing, but it didn’t cause stomach pain, just cramping in the intestines, which made it slightly better, and still diarrhea. She said it would get better once I ‘got used to it’ and I believed her. I believed her until diarrhea became more blood… then just blood. Fast forward a year of taking pills to fix that problem and I still can’t take anti-inflamatories even OTC. And… the next doctor (given I was rather displeased with the last) put me back on triptans, even though I was taken of them because that adverse reaction of chest pains and breathing issues isn’t something to mess around with… and I didn’t argue because, well he wasn’t going to put me on painkillers was he? And I needed to work so… what could I do? And that is why I never take more than one triptan a day or two days in a row… I don’t like those side effects and they are freaky.
Same doctor who put me back on triptans years later decided I didn’t need my asthma preventative anymore. Just took me off it. I’m just going to say that resulted in dizzy spells and a surprisingly low peak flow and of course more adverse reactions from my triptans because when they cause issues, that is how I treat the breathing issues. And waking up not breathing, as in gasping for air because you took your triptan the night before and have no asthma preventative is not bloody fun… good thing I still had my asthma inhaler or I would have had some serious problems. He also put me on Toradol shots and told me the stabbing pain I got from them was just the aspirin getting into the stomach and that it wasn’t a problem like the toradol pills would be for me… yet whatever that pain was it lasts and it still causes IBS-D problems.
And I stopped going to the ER for status migraines because, of course, the ER here treats every migraine with toradol status or not. So when I had the status migraine that caused the nerve damage with my hand never went to the ER when it turned status, or when the nerve damage happened. My doc thought it might have been a persistent migraine aura! Seriously. One neuro believes I had a stroke in my sleep that caused the initial nerve damage. Which then progressed from there. Other neuro thinks the migraine caused the nerve damage. Either way the ER would have treated the status migraine with toradol, which doesn’t abort them with me and it would have happened anyway. Which is why I don’t go to the ER and clearly I should have anyway, maybe after even if I don’t think it would have helped. But once you realize they don’t do anything to abort the status migraine effectively then the risks involved with them will be there whether you go to the ER or not… clearly. And that is pretty dangerous and risky considering I might have had a stroke and could again I guess. I’ve been told what I should do is say I have an adverse reaction to toradol so they do something different… but different how? Clearly they fail to understand what a status migraine Is.
So yeah risky business.
With neurologists I bring in all my information. Which they never look at anyway. I discuss all the issues that are of major importance. And they have their recommendations. A good neuro will discuss options and side effects and we review which one to choose. A bad neuro has one option and you just have to take it, no discussion offered. However I rarely see a neuro and so sort of have to go with whatever they recommend otherwise hard to see any changes. I mean if they offer one crappy solution that I think will not work… I’ll try it so we can move on to the next one. If they have another option. The last one recommended 400mgs of topamax… I made it to 300mgs and had so many side effects was sicker than hell and he seemed so disappointed in me that I didn’t tolerate it and also had no other recommendations for medications. He is not a neuro I would recommend, unless you want to try this treatment because it is his go to one for everyone… one size fits all.
And clearly over time I have realized all this has caused some problems. Not just problems but it shows a sort of passiveness on my part and a dangerous passiveness. I do realize I needed the triptans to work for example… but also that I was in so much pain that I didn’t care if angina turned out to be a heart attack that might kill me. And I realize the fact that no one looking into the nerve damage on my hand means while they can speculate on the causes of it all they want… they don’t even know the extent of the damage let alone anything else and that sort of pisses me off. And I realize being diagnosed with migraine associated vertigo but not having anyone treat it at all is a pretty big problem these days. So lets just say, I’m working on a pretty extensive list to bring to my new neuro to address specifically. However depends on the neuro whether they will actually look into things, actually discuss treatments with me or not. And frankly I will still go with what they recommend because my preventatives do not work so what can I do but try something different?
However with doctors I’ve learned now to be far more cautious. I have found a doctor who at least listens to what I say which is a benefit. She put me back on my asthma medication. Told me to stop taking the Toradol shots. Put me on depo for the menstrual migraines. So in the end it is just a damn good thing to have a doctor you can communicate with clearly. She is the one sending me to a pain clinic and a new neuro as well. I have hopes that we will develop a good doctor patient relationship. If I trust that she listens to my concerns then I will trust the treatment solutions she offers. And she will trust that if I am having a problems with that treatment I am seriously having a problem. I don’t have any need to tell her how to do her job or bring information with me, unless I heard of a medication that I want to know about, but I know I cannot be passive either. Like she looked into some back pain I have been having and after some tests it looks like it is just FM… just FM is a problem though because clearly it is being caused by my exercise attempts and I’ve been experiencing a lot of pain from mild exercise, including this back pain which rather prevents me from walking far when it is aggravated and we jointly decided that a small increase to my Lyrica might improve my ability to exercise, as it might decrease my pain sensitivity. So she investigated the problem and when we discover it was an FM problem, which was still a problem, we looked at how to improve that. There are many ways we could have dealt with this. And a crappy doctor… would have done nothing. Hell a crappy doctor would have assumed it was FM of the get go and not even looked into it or recommended a thing. That is what I’m used to. June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.