Starting to figure out some of the sources of my migraine misery with direct cause and effect.
Wow this took a while to figure out. I’ve been on a strict trigger free diet eating only whole foods, nothing processed, no alcohol, nothing aged or fermented like cheese or yogurt, nothing smoked or processed like deli meat, no bread at all for no yeast or malt or sourdough or other processed items.
I’ve had some better days and some not, and I wasn’t sure why not.
First, I’m fairly certain the anticonvulsants are doing nothing to prevent the migraine attacks, I think all the improvements are due to my diet changes, hmmm.
I’ve noticed some specific symptoms for years like I can’t drink red beer like Killians without an instant killer headache. I never called that a migraine, because just head pain and no weird neurological stuff. I stopped drinking that beer and no problem. I have a similar but much milder headache from green tea. These headaches are instant and felt after just a few sips right in my forehead.
The biggie seems to be bread and I thought it was yeast, but now I’m thinking its the malted barley. I’m getting a predictable reaction to this now as well, and its not a headache. Its a hemiplegic migraine. I’ve had no bread, no pizza, no crackers, nothing. Now that I stopped eating all of that, I can clearly see my reaction to it, and it isn’t pretty.
I tried again yesterday. I made waffles for the kids, and added chocolate chips and blueberries. (guess what chocolate and berries also have tannins, I know this now..) Oh they looked and smelled so good and I haven’t had anything like that in sooo long so I joined them for breakfast. I knew it might make me sick or blur my vision or something but I had nothing planned, didn’t need to drive, and wanted to experiment on myself. Sigh. Not fun being a human guinea pig like this but I need some answers before I see my neurologist again in a few weeks.
These phenols are also in aromatics like perfumes, which just ties it all up in a nice big bow for me. Aha! it all makes sense. So if I eat it, wear it, or even smell it, these phenols are hurting me. The weird thing is – they are antioxidants and should be good for me. But we all know how much good it does to say SHOULD. I can’t explain it yet, I can only say this is my story, and the pieces are starting to fit together at least. I hate random. This isn’t great, but at least it doesn’t feel random and I feel like I can control it somewhat, or at least try to manage it.
Anyways, it hit me hard. it was not instant. It was a few hours later. See below to see the sequence of fun events I have from eating this waffle. Its unbelievable. I’m starting to put this together. The biggest culprit seems to be the malted barley. I’ve been thinking of the ‘allergies’ and ‘sensitivities’ I’ve had my entire life and wondering how much is related to tannins and polyphenols, it is making sense chemically now. Problem is, America puts this stuff in everything processed, and its also in many healthy foods too like nuts, beans and berries.
I just need to stop eating. Problem solved. I had the right idea with my anorexia in high school, maybe I was actually trying to feel better and not self harm….wouldn’t that be something.
First I feel my face go numb and droopy on the right side, like my cheek is too heavy. It is hard to talk because it is hard to move my mouth, but also because it is hard to think and find words. It is hard to understand words. I hear my kids talking but it sounds funny. I laugh. I know I’m confused but it isn’t scary, it amuses me in this state. So strange to explain this because it makes no sense as I type it, but I’m describing what happens when half my brain shuts down, so I guess it doesn’t have to make sense. Next is the arm and leg and right side weakness and pain. This type of nerve pain is searing and deep. My muscles twitch and spasm. I’m unable to grasp a pen in my hand and bear weight on my leg. I stumble and lose my balance. Everything spins. I get nausea, diarrhea or vomiting. I either can’t urinate or urinate too frequently with a weird cloudiness. My vision is distorted in some way, always different what it looks like, sometimes like Picasso, sometimes double vision, sometimes like alice in wonderland. I don’t panic any more, I just enjoy the show. No not really, but I know I can’t fight it and sometimes I do have a sense of awe at what I am seeing. I take magnesium and motrin and rest with ice on my head, neck, back, arm to help with pain. And then all I can do is wait for it to go away. If I’m lucky and it hits quickly I will fall asleep, nearly black out when it first hits. The head pain comes later, like a brick, and can last for days, along with the pain in my limbs. I have to massage and keep moving to get the bad stuff out, its worse if I lay in bed or try to hold my twitches still. So I drag my limping, wobbly butt over to my cane and the wall and pace about the house for as long as I can tolerate. I try to do it for 10 minutes at a time all day long.
My other huge trigger is changes in barometric pressure. This will give me the instant -I must pass out and sleep- type of trigger its so intense sometimes. I have an app on my phone that tracks air pressure on a graph and alerts me to changes and I’m analyzing the history against my symptoms in my journal. I noticed the other day I was triggered at the drs office at the hospital. I thought it was a stress trigger until I checked my pressure app and saw how high the pressure was during my dr visit, and then it went back down so quickly. I thought that was odd and started investigating what happened. Turns out buildings have positive air pressure inside! A LOT of air pressure for large commercial buildings like hospitals that are sealed tight. I never knew. I started checking my app for other buildings, sure enough the pressure is raised a bit – instantly – every time you enter a sealed building. But this hospital was a difference of like hurricane level, no wonder it got to me. The app I use is called “Pressure Tracker” if you want to find it for android and see for yourself. I had to calibrate and tweak it, but I needed something to apply my geekiness to since I’m not working. The air pressure trigger also brings on a similar hemiplegic migraine as described above, but tends to be more intense and cycle more quickly, more painful, but passes in hours instead of days.
That’s my life now. Try not to get triggered, and spend all my time recovering from being triggered. Nothing is really controlled yet but I am starting to learn and uncover what is happening. I’ve made the diet and lifestyle changes. I’ve accepted my new life. I’m going to ask the Dr about my future and possibly going on disability payments at my next visit. I don’t have much hope at this point of recovering.
I have no idea why I am more sensitive now than I was previously in my life, why the migraines I’ve always had and managed turned into debilitating hemiplegic crises. The Drs don’t know either. All they do is offer me other pills to try. If I didn’t try this elimination diet I don’t think I would have been able to walk at all at this point, just getting sicker each day. But its like some switch flicked on and I can no longer tolerate a few triggers at all, sends my brain off instantly.