No Freedom Always a Prisoner

By cj83

2 min read

At the age of 4-6 years old my mother was told I have a seizures disorder and was put on Depakote among other seizure medications to try throughout the many years. As I got older I was able to investigate and seek medical help by myself for my in quote "seizures", so at the age of 27 I went and got tested again for seizures because I wasn't satisfied with believing what I had was seizures, there was NO WAY I believed what I was diagnosed with was the correct diagnosis... never in my life I would have thought I had a migraine disorder.

Being exposed to the world of migraine

I never even knew there were so many migraine disorders. i thought a migraine was just an intense headache, and that there was no other kind of migraines, I never knew there were more types of migraines, so after all the testing and neurologist appointments. I was correctly diagnosed with probably the most excruciating intense severe migraine disorder; there probably is out there! I was diagnosed with having complex migraines, if you don't know what they are im going to sum it up for you quickly.

Defining complex migraine

They mimic a stroke... half of my muscles on one side of my body goes completely numb and limp, yes my tongue as well, it ends up feeling swollen and makes it hard sometimes to talk, but I can communicate still but just can't move my tongue, and I vomit sometimes, I'm paralyzed, and under the mercy of this complex migraine, my eyes go into the neon effect and shapes that sometimes slightly blind my vision but not completely though, and not always so server, sometimes confusion if its a server episode. But confusion rarely happens tg!

Winding down from the pain

Than when it's all done I end up with the severe pain of the migraine, the neurologist doctors say people that have these usually grow out of them, well here I am 37 and still have them...I can honestly say I wouldn't wish my worse enemy to have these. They have inconvenienced my life for so many years, and I feel embarrassed when I'm around other people and have an episode happen. Still, I know when an episode is about to take place because I know the signs and I know my body. I've excepted my disability a few years ago and just deal with them the best I can, but I hate when I have to have help because I feel like my episodes are a burden on others, so I don't ask for help unless its a trip to the ER for them.

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rlb59 Member
Hi CJ83. You are not alone. Even with seizures. I couldn't take Depakote at all. I gained a 100 lbs with it. Now I'm having seizures again. One day I had 2 grand mal seizures. Not fun, I was full of bruises. A few months ago hubby and I both had heart attacks 4 days apart. So the blood thinners make bruising worse. So now I have to find natural or invented to help with the migraines. Right now im only taking hydrocodone and a muscle relaxer.. also when those don't work I follow that with medical Marijuana. I don't smoke to get high at all. Just enough to ease the migraine severity. And like you the stress is just outrages right now. My Dad died last Sunday. And the family I seem gto be the Black sheep. They don't believe I have the migraines and think I use it as an excuse. And just like you feel, I would wish this on my worst enemy! My siblings are all younger than I am and have spent more time with dear Ole Dad. And they don't think I know anything, that I'm stupid. I almost didn't go and see him and then the family meeting that followed. And I still have 2 more days to be with them and continue to feel like an outcast. Which incensed me even more. Growing my health has always difficult. My Mom would call me a hyphypochondriac. Lord how I despise that. So on top of everything else i always have to defend myself with them. I'm 60 years old. How much longer do I have to defend myself? If you have any idea of something to ease them some since we both have seizures. And I'm old and a perfectionist. At least I was till my migraines escalated. I wish everyone better day
dinamay Member
I have the greatest sympathy for you, CJ83, and for you too, RLB59. Way back in the ‘80s I had that type of migraine too and made many a trip to the ER, thinking maybe I was having a stroke. Or something. But eventually I found a doctor who diagnosed me as having hemiplegic migraine. He prescribed one thing and then another. Finally he found a fairly useful preventive regimen which included Depakote. Yes, it made me gain weight, but at the time I was willing to get fatter as long as I could spend more time out of bed. Imitrex (generic sumatriptan) was a big part of my breakthrough too. I notice neither of you mention this or any of the other triptans - there are at least half a dozen now and various ways of taking them. But aside from medication, I’ve found it’s really important to reduce stress. If your family is stressing you, it can be hard to distance yourself from them, but that may be the best thing you can do for yourself. If I feel obligated to spend time with people who are going to give me a hard time, I find it helps me to set a time limit. For example, I go with the plan to stay for 30 minutes only, figuring I can keep a plastic smile that long. Then I plan on something fun afterward as a kind of reward for myself afterward, too. Even if it’s as simple as dropping by the 7/11 store and getting ice cream. Meditation is a good stress reduction technique too. There are free apps to guide us through deep breathing and relaxation exercises, as well as guided meditation. And if that’s not your cup of tea, there’s always the literal cup of tea. Just make a nice, hot cup of tea. Or hot chocolate, or decaf coffee, whatever appeals to you, sit back, put your feet up, and sip it quietly, without worrying about what people (who are not present) might be saying about you. You take care of you. Because you deserve it.