Learning from Me, Take Care of You
Last updated: October 2020
Where to start on a personal story on migraines the beginning makes sense, but then again where am I today? I’ve avoided accepting migraines as debilitating. I’ve tried ignoring them, I know like you can. I don’t mean actually ignoring the migraine, I’ve tried ignoring the condition/illness. I guess I’ve thought if the elephant isn’t acknowledged it doesn’t exist. Perhaps, that is how many of the ones close to us look at them too or just don’t realize how LARGE that elephant really is for a migraine sufferer, especially a chronic migraine sufferer like myself. Never mind people in the general population like co-workers, employers, and just lay people.
I’ve probably had migraines since a child, but wasn’t diagnosed until I was 25. I’ve read about the condition, since then been seen by different doctors, been treated different ways. I knew that eventually as I aged they would get worse. I also have had varying periods of them being horrible and then times when they have been “tolerable”. I’ve been fortunate I have been able to work for most of my adult life, but it has impacted my work because most employers don’t understand why you can’t work and eventually it costs you jobs, even when I worked for a doctor. They consider you an unreliable employee, because you can’t be depended on “Oh, there she goes again calling out sick.”
Family is a real drag, because I will ask them do to things like not wear perfume around me. They think you are being unreasonable for the request or dramatic. I will try to mask that I am feeling bad and be a good sport for an event or family function until it’s starting to become unbearable. Making myself cranky and I’m in pain. I wonder why they can’t see that I am hurting when I can walk into a store and people will go up to me and say are you “Ok?” when I am in the throes of a level 3 migraine and my own family can’t see a 6?
I’ve had two episodes of intractable migraines, one lasting a year and one lasting 6 months. The year one was really not that bad because although it was there it was just a low constant pain with “spikes” of misery. The 6 months one was last year, requiring me to actually go on disability, a couple of hospitalizations and unable to even leave my bedroom due to the constant never ending pain. I didn’t have the lights on or TV and lived in the dark. One would think that the ones closest to you, the family that loves you would really get it then. At one point, as I am laying in bed debating about not taking it any more pondering the options for ending it. I ask my husband to take me to the ER and he says “No, he can’t he needs to take his mom to the grocery. I’ll be fine, it’s just my migraines.” Now, maybe it’s exhaustion on his part as well, over 20 years of dealing with someone going to the ER several times a year because medicine isn’t working, the preceding several months or just dealing with someone with a chronic condition can get tough on them as well. I called my doctor again, explained I was going to have to go to the ER the meds weren’t working and the pain was too much. I took myself to the ER.
Obviously, my doctor and I have worked through this migraine I went through. I am on 5 different daily prophylactics to control my migraines it’s the only thing that works plus Botox. This is to get my migraines to a manageable level. We don’t know why they have gotten so bad, doctor and have no idea why it wouldn’t respond to treatment. I’m very happy with my treatment plan, it’s been tough but I am doing really well now. I’ve graduated to only seeing him every 3 months after seeing him like constantly. My migraines are now down to like 4 a month. Of those four, 3 of them are barely painful (Ha-ha we are talking migraines it put non-migraine suffers on the floor.) the other one may require me to not work for 3 days. I’ll take it. I’m very happy with my progress. My doctor feels this may be as good as it gets for me without going to even more drugs and I am not willing to add more to my routine, plus it would only be 2nd tier drugs like gabapentin.
This is long and I would like to wrap it up, but concluding working with a good doctor and he must have good staff, who is willing to discuss your treatment plan invaluable. My doctor and I discuss what we’ve tried, I’m willing to revisit prior treatments even if been done with other doctors, I’m open to non-traditional treatments, and if I need counseling I go. I started to see a counselor as well to deal with the chronic condition and how it affects me emotionally and changed my life. I’ve had to learn that I am just not going to be able to do the things that everyone is wanting to do and if they can’t accept it, too bad. I’m not going to explain myself to my family they should know and understand. I take time for me, if I need to call it a day, I do. I found a job that allows me to work around me, I’m not making any money right now, but it’s ok. Hopefully it will come, I have to look after myself first. Maybe you will learn something from this as well.
Have others downplayed your migraine pain?