First – let me preface this post with a disclaimer and a warning to posterity if you’re currently in the thick of this. This disease is a beast. It will push you further and farther than you’ve ever been pushed before and then some, and it is NOT all in your head. Chronic migraine is the most severe chronic headache phenotype, and chronic vestibular migraine is its insidious sister disease that lurks off in the shadows. Because this is an invisible illness, it may seem like the most rational thing to do, and maybe the only thing you CAN do in this particular situation, is to ignore it and pray that it will go away, but I would strongly discourage this approach. This disease demands your respect and it demands that it be taken seriously and only then will it finally begin to let go and relent.
That being said, I came into this forum with a number of misconceptions and harbored prejudices about migraine that ultimately significantly impeded me getting on the path to recovery. Among these was an idea that “migraine” is a singular collection of symptoms and not a spectrum of disease with many different flavors and variants. Another was that “Migraine can’t be that bad because everyone has it” and that “everyone gets migraines” as this is a logical fallacy that disregards the heterogeneity of migraine disease.
The worst of these misconceptions was that I was doing something wrong, or there was something that I could do naturally to self-treat my illness through the use of supplements, over the counter medications, candida cleanses – it’s all pseudoscience and wishful thinking. Do not go down this route – it will only delay the inevitable of you either getting worse or needing more intensive treatment than you otherwise would have needed. Serious diseases require serious medical intervention or at least advice from someone with a degree, and believe me when I say that this is certainly a serious disease. This is a tough truth that may be difficult for some people to read, but you do not know better than your doctors. Please listen to them and cast aside your distrust. Sometimes it really is “just migraine”, whatever that means. It does not take away from the seriousness of the disorder. I really wish someone had conveyed this to me when I was early in my journey, but I had to figure it out the hard way, and I paid the price with interest.
This idea carries through with medications. People with this disease tend to be highly intelligent, but neurotic (I’m sorry but its true). This can manifest in overanalyzing our body’s responses to particular medications resulting in us casting them off sooner than they should be in order to determine if they’re effective or not. If you are assigned a medication; stick with it until you have very good reason not to (serious side effects, lack of efficacy after 3 months, etc). I have been guilty of stopping medications far, far too early because they “make me feel funny” or cause a side effect that’s uncomfortable but not dangerous. This is a barrier to recovery – sticking with a medication until I had a good reason not to was the BEDROCK of my recovery progress. There are no bad drugs; there are drugs that work and drugs that don’t. People react differently to different medications so please do not read the Drugs.com reviews for your medications and instead give them a fighting chance. My drug is Venlafaxine, and if I had seriously believed even a fraction of the horror stories and that they would apply to me, I wouldn’t be writing this “success” story.
The biggest barrier it seems to me in getting better from this is education. Because VM is a more rare subtype of chronic migraine, many physicians do not know how to properly advise patients with it, and this fuels frustration and a certain degree of doubt in patients.
Now onto my recovery plan and what worked and what didn’t:
Like I said, this disease demands your respect and it demands your attention. That being said, for many of us, its not enough to just do one thing: diet, exercise, medication, supplements. In many cases it requires a combination of different things.
Things in order of importance:
- A preventative – like I said, for me it was Venlafaxine 37.5 mg and then 75mg which is my current dose. You have to try different medications for multiple months before you make a final determination regarding whether or not they work for you. For me, it took about 2 months to be absolutely sure that it was doing something and another month and a dose increase for me to have sustained relief and a significant reduction in the number of my attacks
- A diet change. I followed the heal your headache diet which emphasizes the elimination of tyramine producing foods. There is a kind of compounding effect that happens with the diet, where at first, the effects are barely noticeable, but the longer and longer you’re on it, the more pronounced the positive effects are. My biggest triggers were coffee, cheese, onions, and gluten. It sucked eliminating them, but feeling good is better than cheese. I’m sorry but it just is! It took 3 months for this to make any kind of difference.
- Supplements. Magnesium, Niacin, and Fish Oil were what I started with, but they had little effect. I recently added in high dose Carnitine and the effects were DRASTIC. I havent been on it long enough to say if its truly the carnitine or other measures starting to make dividends, but I’ve been on it for about a week and my baseline day-to-day dizziness dropped down to 0.
- Resting and shifting my perspective about migraine: I’m a big proponent of the underlying metabolic theory regarding migraine, in which migraine is a process that gets triggered when there isn’t enough cerebral energy to go around. That being said, migraine in that perspective is the brain telling you to REST. Allowing myself to do this and forgiving myself for it was what marked my transition from chronic to episodic disease
- Exercise – I need to get better about this, but walking and mild aerobic exercise helps a lot, but I can’t imagine it would do much in the absence of everything else.
Where am I now? I have grown to dislike the “% better” indicator for how I’m doing with this disease because its difficult to objectively quantify. Its better to rationalize in terms of function: what can/can’t I do now, and how has it changed over the course of my treatment? I can now do basically everything that I could do before my illness. I can use the computer, I can go out for the day without getting slammed with dizziness halfway though, I can go shopping at the grocery store with mild discomfort, I can work, be productive, and follow my passions as I did before.
Where do we still have to get to? The more subtle things. I still get attacks but they’re more brief. They’re normally weekly disturbances of mild dizziness that I sleep off. I still have heavy postdrome that takes a while to clear up and I suspect it will be a lot longer until it’s gotten rid of: brain fog, dissociation, memory disturbances, etc. Hopefully in the coming weeks and months, this will get straightened out.
Success, but definitely not done, “cured”, in “remission” or the like. I’ve found something that works and we’re moving in the right direction. I suspect that this is a lifelong disease – I have no expectation that this is all just going to go away and never come back. I’ve already been though the 5 stages of grief in emotionally processing all that. However, I do believe that this is entirely possible to manage just as people manage headaches that come and go and high blood pressure, and the like.
Let me know if you have any questions