A migraine story
Last updated: June 2023
I never thought I'd ever sit down and write here. I read a lot of stories, trying to find inspiration, something to hold on to. But write myself? No.
Whether out of stubbornness or sheer stupidity - who knows. Writing this I still haven't decided if I'll actually post it.
English is not my native language by the way, so sorry in advance if I misspell or don't make any sense in what I write.
What is the saying - I feel like being at the end of a rope(?).I feel like I am drowning.
Sorry if I'm rambling. My thought patterns are a mess.
Simply put - I am scared.
I've had migraines most of my life. Although I didn't get a proper diagnosis until I was 18. There is a long list of everything I've done or tried to handle the attacks, too long to list here. The things we do when we are desperate.....
Which I am now. The last 1.5 of my life feels like I'm in hell, or rather I though it was hell...
I had a period of 6 wonderful, surreal months of not a single attack. Followed by 7 month of having them 87% of the time. It got chronic a while, doctors were talking about migraine prophylaxis, and I fell into severe depression. Ended up having suicidal thoughts. Only the doctor knew. I've had them before, a few years ago, for other reasons. Suffice to say you don't think straight when you're in too much pain. I used to think that people who had them were weak. But they're not. I am not. But there is a limit to strength.
I managed to drag myself out of the depression, and thankfully the migraine attacks reduced in frequency, went back to my normal 25%. That lasted 8 months before I ended up depressed, exhausted, and in chronic pain again. This time I ended up on sick leave (2 weeks), I simply had no reserves left, and the doc thought a break in routine might work.
It did, I got better, and had 6 weeks of almost no attacks, only one halfway. The feeling of invincibility when you're free... For every day that went, my mood got better. It's a high in it's own. Nothing could break my happiness.
Perhaps that is why it took a month this time before I got depressed again.
Yes, it ended about 2 months ago. I can only recall once, 10 years ago, when it was this bad. And that was only for about 3 weeks, where I was so sick, literally delirious, the doc thought I might have a brain tumor. I didn't, it was an attack triggered by the smoke from a fire at work.
I have no idea what is the cause now. And it scares me for many reasons. There is no pattern to my triggers, my "normal" triggers are sharp light, smell, sound and weather. I never know when it will hit, never have. The sun might be too sharp, it might not. Maybe the lady walking past me wears a perfume I can't handle, and so on. The sound of the bus hitting the brakes might be too much.
Being a bit of a control freak, I have analyzed it to dust. Few food sorts are triggers, as far as I can tell. But never having tried a proper elimination diet I cannot be 100% sure. I don't know what else to do.
I'm tired of crying, being exhausted, feeling disoriented, loss of concentration, no balance. I have trouble remembering simple things, it's like walking in circles. Have gotten symptoms I never have had before. I always got nauseous, but vomiting was rarely a problem. Was. I get feverish and have cravings. The last one wouldn't be too bad - if I could eat. I have trouble doing that, swallowing food. Not that I feel interested in eating at all. Thoughts like "Why bother" keep popping up.
And sleep. I normally don't need more than 4-5 hours of sleep. Now I sleep 12-15 hours. Not counting when I have to lie down after taking medication.
I have almost always gotten aura, but it often stays though the whole attack now, and so do the stroke symptoms. I often feel numbness on the left side of body, most often my face and arm. I've been told my speech isn't clear and that it's visible on my face, think it's called drooping (?). Again, it's a normal symptom for me. But through the whole attack? We're talking sometime days here.....
I've fought one of the doctors for 1.5 year about taking betablockers. I didn't see the need when I could handle it, and my regular doctor agreed. Since I got better, we agreed to leave it for now, but it had to be considered if it got that bad again.
Perhaps I should rephrase my earlier statement. I'm not scared, I'm terrified. I lost.
I've been on betablockers for a week now. There was no choice left. I've gotten so depressed again, it's sometimes scary the way my thoughts get. I just hope this works I have no clue how early I should expect results.
All I know is that I feel like it's the end. That I've given up. I guess in a way I have. I never wanted this. I feel like I've lost in a way.
What if this doesn't work? Then I've given in, and it was for nothing. And what next? Can I afford it? Not everything is covered here. I feel pressure from all sides. Both from family (some are supportive, some not), work, and now social services. I have enough on my plate, and now I got a letter saying I'll lose my right to medical pay in a couple of months (evidently it adds up over the years and I haven't been well long enough for it to reset), and will need to apply for another type of aid (I don't live in the US). I'm a bit surprised that I didn't break down and cry. It was the last thing I needed now.
Which reminds me of something. On a side note. Weirdly enough, one of the reasons I've always managed to handle my migraine attacks before they got too frequent, no matter how severe they could get, was because I got angry. And my anger always energized me. I guess it's anger cause I don't like to lose control. Is that normal?
I guess after this long story my question is, how do you manage living with chronic migraine when it's this debilitating?
I can't drive. Nor manage to go to the grocery store by myself. Some days I can barely see cause my vision is too foggy, so family has to shop for me. As I've been ordered by the doc to try taking small walks as I can't do my regular exercise, I tag along to the store to get out and move. But I am in no condition to go alone, I often can barely think straight. If I do try to go out when alone, I noticed I do it when it's dark. Not just to avoid the light, but to avoid people. I'm not the most sociable person from before, but.... It's like my subconscious has given up. Cause I know what and why I am doing it, and it is probably the depression causing it, and I still cannot snap out of it.
Perhaps I'm being too hard on myself, and should try focusing on the small things. We are, after all, our own worst enemy. But how to do that when I feel like swimming upstream?
I think what scares me most is that I am taking betablockers now. Have never liked taking any form of medication. And it doesn't help having had family who abused pills either. I've tried to read up on it to calm myself down. But it hasn't. Kind of hoping someone here can help me.....
Have others downplayed your migraine pain?