There are a lot of things I hate about having diagnosed migraines & cluster headaches but the top 4 could be ...
1. When people tell me they can't be that bad
2. When people claim to have had them 'this one time' or once every 10 years
3. When people ask when I will get them under control or tell me I need to see a doctor.
4. Oh yea, most of all I HATE actually having a migraine or being stuck in a cluster. They aren't sexy, this blog isn't sexy, but its a cold hard fact I live with, so you should too...
Those aren't in any particular order, just the order in which I spit them out. You see both migraines & cluster headaches, although under-diagnosed, mostly for lack of knowledge or understanding by the doctor, are not simply a bad headache, it is a brain disorder with no current cure and it is a recurring problem. Some doctors and researchers think that it's tied pain is ties to the constriction/ dilation of blood vessels in the brain, while newer research is showing it might be the actual nerves creating and sending crazy pain signals. In either case it is a malfunction of your brain, yet there is still no sure answer, and there certainly is no sure solution.
Cluster Headaches, are far worse than they sound, they are also known as the suicide disease to account for the number of suicides, attempted or complete as well as self harm that comes along with being in a cluster. You see, cluster headaches are so painful patients suffering from them will try and harm themselves to feel worse pain somewhere else, to numb the pain, or to end it all to get away from this overwhelming pain. When one eye starts tearing, when I wake up in the middle of the night unable to open my eyes at all, I know what's happening. It's going to be about a week of searing headaches that knock me on my ass followed by a brief reprieve of at most 1 hour at a time before it starts all over again. That's right, they are just as they sound, crazy pain for hours then a short break, then another and another and another, it is a cyclical assault that not only drains you physically but emotionally as well. It is actual hell, and usually requires a hospital visit for me, to help manage the pain and to make sure I don't hurt myself on purpose or accidentally during the spell. Let me make this clear, at no time outside my headaches have I ever wanted to self harm, in any way, yet the thoughts that I've been able to squeeze through my cluster headaches seem frequently be of breaking an arm in the bathroom door, while I'm on the floor crying and vomiting, in order for the pain to move somewhere else. I haven't done it yet because I know the the far recesses of my brain that doing such a thing will only make my situation worse, not better and I know that in a week or a few days it will all be gone only to return again when the moon is just right. I can't tell sometimes if the vomiting is just a reaction to the pain I am in, or if it is part of the headaches themselves, and if one or any of my neurologists has ever told me the answer, I'm sorry I don't remember. If it doesn't start while I am asleep, a single tearing eye is a sure warning for me that I am about to hate life. I am not talking about a watery eye, it is a full flood of tears, but not crying, no eye irritation other than I sometimes lose sight in it when it's happening. As soon as the eye starts I get my meds in order, ready to take and hopefully abort the first of many nightmarish headaches.
Now that I've given you just a tiny insight into cluster headaches, let's move on to migraines. I have what they call basilar type migraines on a chronic basis, meaning I have more migraine days a month than headache-free days (they categorize it as 15 or more). What makes them 'basilar type' is that my migraines cause difficulty vocalizing words, or speaking in sentences, and it makes me uncoordinated or unbalanced on my feet. The pain itself generally starts on one side but moves to encompass my entire head. I generally feel nauseous before onset and during the migraine, and will frequently throw up. If I wake up in the middle of the night with a migraine (or cluster headache) I know I will vomit. No, your crappy hangover headache with nausea or vomiting is exactly what it sounds like, NOT A MIGRAINE, unless you actually get migraines, have a history of migraines etc, in which case good job triggering yourself into a bad one! On occasion I get visual aura as well which comes in light patterns & blurry peripheral vision.
So unless you had a serious head injury or concussion I doubt you've just had ONE migraine, you either get them, or you don't. Even if it is a single migraine annually, although rare, it is still a recurring condition. So when you tell me about this 'migraine' know that I am thinking 'they had/have a bad headache / hangover headache / tension headache or one of the seemingly endless supplies of headache titles people have come up with for their heads feeling like shit. The truth of the matter though is that a migraine isn't just a bad headache, these are debilitating, and come with other neurological symptoms. I have basilar type migraines so my symptoms are different than others, mine can consume my whole head after starting on just one side. I promise you will endear yourself to your migraineur friends if you stop calling your extra bad headache a migraine or baby migraine or whatever bullshit you come up with, how about you just be happy you don't actually get migraines and call your headache a headache.
Of course now you say, but what about people who take preventatives, or abortive therapies, or why don't you try some of those. Well I have and I do take medication. I have also tried a raw vegan diet and supplements guided by a naturopathic doctor in conjunction with my neurologist, acupuncture, chiropractic adjustments, massage, removing certain triggers from my diet, changing birth control and pretty much every other option you can think of to lessen the number of migraines I was having monthly. I went through a battery of tests then started on a path of preventative drugs. These were supposed to create some kind of anti-migraine stasis within my body, needless to say, I do not take any of these anymore. I tried one drug on which I had to monitor my blood pressure because they worried about it dropping too low, I tried another that made me fall asleep like a narcoleptic, literally fell asleep on my keyboard at my desk, fell asleep on the phone with a friend in the middle of the day. I couldn't drive on half the medications they gave me, and another killed my appetite to the point that no amount of weed would bring it back. The last preventative on the list was topamax, but I couldn't take it without changing my birth control (yet again) to an IUD, that was when it went too far. When I had to invade my body with an alien device just to take a drug to control my headaches (because it nullifies your birth control like an antibiotic would). After that I kind of just gave up on preventing them with drugs. Of course before I went on this rampage of drugs, for years I had tried changing up my diet, omitting common triggers like red wine, cheese, caffeine, etc but found that I still got migraines no matter how long I'd been off that trigger. In addition to omitting triggers I lived raw vegan for almost a year hoping to reset my body, which worked for so many things but I still had migraines and at several cluster spells that year. I had also changed birth control multiple times, and the only sense of relief I got through any of this was while I was on 'the shot' depo. For 3 years I got a birth control shot every 3 months that had me at my lowest occurrence of migraines. Although near the final 3 months were a nightmare, after pretty much no menstruation over the previous 3 years I was bleeding constantly, and with a constant migraine! It was terrible, so my doctors switched me to something else, something similar to the shot that might help keep the migraines at bay. Well, let's just say my hormones have gone on one hell of a rollercoaster ride that took my migraines and clusters right along with it, and it has been painful.
Some of my migraines I can function through, if I catch them early enough I find that maxalt is a great abortive medication with the fewest side effects. For me, Imitrex tablets which is very popular makes me feel like I am filling up with sand, it makes me feel like I've had something to drink, and makes my head very foggy, a fog that doesn't seem to lift even after the migraine pain itself has gone away. If I am too deep in a migraine too fast, or I wake up with one, I know that I've only got one option that even has a chance - Sumavel Dose Pro (imitrex liquid injectable) . This compressed air injectable changed my life, although at first it scared the crap out of me. I refused to take the shot when I was alone until maybe 6 months ago, and even then I prefer someone else to administer and monitor me after I've taken it. You see, there is no needle, it's a liquid propelled using compressed air directly through the skin and it feels like a bee sting with similar press-action to an epi-pen to the thigh. The first 10-20min are hell, I feel like I am filling up with sand, hot sand, I feel a heat overtake my body especially my face and chest. My chest gets tight and it feels like someone is sitting on it. The migraine even gets worse for a few minutes. And then, the walls of pain fall down around me, I feel myself coming clear of the oppressing pain and waking into a fog, but not near as bad as Imitrex tablets. The sumavel pen is THE ONLY OPTION for my cluster headaches, I have never had anything else work outside the hospital to actually abort a cluster headache although sometimes it takes 2 pens to make it work. Unfortunately sometimes it just doesn't work at all, 2 shots later I am having someone rush me to the emergency room or my neurologists office for their acute care center. And trust me, as much as you don't like being at the hospital, because no one does, try dealing with 100 nurses who want to pump you full of morphine or demerol which might help for the current headache but will give me and most migraine / cluster headache sufferers terrible rebound headaches as well. When the nurses question you when you ask for oxygen therapy or ask if they can administer more of your medication (I bring my whole migraine kit with me everywhere to make sure no one crosses the wrong pills / shots / etc together). It sucks to fear your medication, or to be in so much pain you can't administer it yourself, or to fear being caught without it in dire circumstances!
I'm sure you are wondering what brought this up, how did we go from paradise to a lesson on migraines. Well, this is a condition I have suffered from the majority of my life and it's something I've stayed pretty quiet about publicly while my friends and family know full well the extent of my struggle. I've spent the past week under the thumb of these migraines after only 2 over the previous month. Every day this past week (except Wednesday) I woke up with a migraine, which continued most of the day, even with medication. And of course every day someone had their own comment to give regarding my treatment of migraines, most of those people do not actually get migraines or cluster headaches or understand their complexity. I got sick of hearing it and wanted to put it all out there, let you know MY experience with migraine and cluster headaches. I have no idea what has triggered this round of migraines, could be the weather, could be anticipation or stress, could be that my brain just makes decisions on it's own without consulting me first, after all, it knows more than I do.
Kayla Jane Danger
PS check out https://migraineresearchfoundation.org/ for more information on migraine research, migraines and what can be done to bring awareness and research into the light.