Noemie

180d

I've had migraines since I was 17. I went to a neurologist and all they found was a "dark spot" on my brain and said that it looked like a bruise and explained to me that a bruise on the brain takes years to heal. Fast forward to 2018, I went to my gynecologist because I was experiencing episodes where I was so turned on no matter how many orgasms I had and she thought it was a testosterone problem so she ordered blood tests. it turns out I have a benign tumor in my pituitary gland that's only 4mm big. but they never mentioned anything about a dark spot. Fast forward to 2019, I was diagnosed with Anxiety, depression and bipolar so the doctor put me on Citalopram and Lamotrigine. in May 2019 I started to experience this weird feeling in my head, and it's really hard to explain but it feels like my brain tingles or goes almost numb. maybe even like it shakes or shivers. I've brought it up to my primary but she doesn't know what it is and has never heard of it. I've narrowed it down to 2 things I think it might be which are: some sort of seizure or a type of aura before I get a migraine. now, when this happens, it's not painful at all, it's more annoying than anything. but I do get a migraine sometimes after it's done. and it makes me very tired and a little out of it like a brain fog. Now in 2022, I still experience migraines and the weird brain shivers things but I've also developed 2 more symptoms that I'm not sure exactly what's going on. 1. my sleep schedule has changed drastically, it first started when I was pregnant in 2020, had my baby in 2020. I thought that being pregnant and having a newborn was the cause but she's almost 2 now and she's slept through the night since she was 9 months old. so I either can't sleep or I wake up between 2-3am and can't go back to sleep. sometimes I stay up all night but mostly when I wake up between that time, I'm just up for the day or I go back to sleep 4 hours later until my baby wakes me up. 2. I am always hot. I sweat in my sleep which will wake me up and anytime I get up to do any activities, even to simply walk up my stairs I sweat and sometimes badly. 3. random body parts will jerk. I mostly notice them when I lay down to try and sleep. my head will jerk to the side, an arm or leg will jerk out randomly. my doctor says they're a "sleep start" but they're gradually starting to happen when I'm not laying down. like when I'm sitting and watching a movie.
4. I'll randomly experience pain. sometimes the pain is my whole body and sometimes it's my back, my chest, or my knee or my ankle or in the area where the hip meets with the thigh. and occasionally lower right abdomen pain. sometimes it's intermittent and sometimes it's constant for anywhere from 1-3 days but not always debilitating.
I'm so sorry for all of this. I've brought all this up to my primary and she doesn't really give me answers or wanna do further testing. I had to push her to refer me to a neurologist for the migraines and weird brain shivers things. that appointment is on June 14th. I'm hoping to get some answers and hoping that someone somewhere is experiencing the same symptoms or at least some and can kinda help me out and guide me in the right direction. At this point I'm lost. I'm not sure if it's just all in my head and I've become a hypochondriac or not. what I do feel is that something isn't right. idk what but I'm otherwise healthy and I'm 32 so I'm written off as "too young" or "it's my mental health". please help...

Pseudoseizures

Feeling of choking

Migraine

acute lethargy

Chronic Generalized pain

Chronic Migraine

Headache

Chronic Headache

Citalopram

Dehydration

Lamotrigine

Depression

Generalized pain

Anxiety (Including GAD)

View all
  • wise

    180d

    Do you still have that pituitary tumor? also the brain shocks sound like the feeling I get right before I have a seizure or a really bad migraine flare

    • Noemie

      180d

      yea I still have it. They haven't done another MRI to check it since 2018 cause my prolactin levels are hanging around 50-80. And yes! I was thinking it was exactly those. I don't get a migraine everytime they happen but I was thinking it was a type of aura. I also don't have a history and haven't had a seizure but I read that frontal seizures, you're aware and experience tingling, which I do. During the brain shivers I get a tingly shock sensation that shoots down my arms into my hands.

      • wise

        179d

        so most or all of your symptoms are almost definitely caused by that tumor. prolactin levels only indicate whether or not you're over-producing hormones, it doesn't mean the tumor isn't taking up any space in your brain. brain tumors aren't only dangerous when they're cancer, any mass that's taking up space your brain is supposed to be in will result in moved/squished structures, which will obviously still cause potentially life-threatening neurological symptoms, including everything you've described in your post

  • MaeBea

    179d

    Good luck with your upcoming appointment! You'd definitely be right to push for an mri or eeg. A sleep study with an eeg even! I've had doctors see the same results as others and still give a different answer. Most important thing though, don't let them tell you it's all in your head! (Well, technically yes, but also no,) Brain injuries like a bruise seem really unpredictable. My first neurologist didn't believe me until he personally saw the effects. Same with a neighbor! It seems you're always "too young" or "too old" when it comes to undiagnosed things. Best of luck!💕👍

  • ShoobyDoobyDoo91

    179d

    My brain vibrates sometimes when I get a bad headache or I'm dehydrated and I'm on the verge of passing out. Also sometimes when I have a massive anxiety attack. The brain is so weird. I've been to Nero and they say I'm normal....have major memory issues but no reason for my.pains or headaches......😥

    • Noemie

      179d

      wow I'm so sorry. I hate when they say "it's nothing" but you're in pain. It's frustrating. The brain is strange and it may sound odd but I will be annoyed if it's just my anxiety. Like I don't want anything to be wrong but I don't want it to be something a little silly you know?

      • ShoobyDoobyDoo91

        179d

        I wanted so bad for there something to be wrong so SO bad!! But nope they say they don't know why I have pain or the headaches or the restless leg. I wanted there to be a reason so I could be treated.

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