Am i Having Seizures

Posted by kyleew6783 @kyleew6783, May 26, 2023

Hi guys! I am 20 years old and i have Ehlers Danlos syndrome, Hashimoto's, fibromyalgia, Chronic migraines, pituitary tumor, a few months ago i would get a "tic" or spasm in my head, neck, shoulders maybe 5 times a month. now i get it that last few seconds- minutes multiple times a day. the odd part that i noticed once i started to track them is that i feel a tingle running from the front to the back of my head before it starts. Nothing triggers it. i also have been starring off for a few minutes but don't notice when im doing it. when i get out of it i feel very off. im not sure if that's like a silent seizure or something. my headache specialist is sending me to a seizure specialist to run an eeg. Just wondering if anyone experiences these or has any insights to what can be happening. Thanks! I have a video of whats going on. i will try to post it

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Happy to hear you are having an EEG. Hopefully they can help you with the 'tic' as well.
I initially had a few grand mal seizures in my teens, and my parents took me to Children's Hospital in Boston. As we went through the trial and error period adjusting the med, I would have these absence seizures. I felt pretty much what you are describing when you speak of staring off....then just feeling off, sort of like having to get back to earth. I hope that if that is the case, the anticonvulsant may help with some of your other issues. My best wishes to you and please let me know how you do.
To me, it is a sign of a good doctor when they are wise enough to refer you out. I'm still on maintenance meds and that is fine...and have been seizure free for over 45 years. My best💞

REPLY

I have a lot of the same disorders as you. I have simalar type of seizures as well as focal seizures that are triggered by severe blood sugar drops and from my cervical stenosis. We are trying to figure out all of my triggers. I’ve had them my whole life and just recently found out they were seizures after blacking out and getting 2 back to back concussions. I also have gastroparesis which triggers seizures when I eat foods I’m allergic to due to MCAS.

REPLY
@chefdecemberskye

I have a lot of the same disorders as you. I have simalar type of seizures as well as focal seizures that are triggered by severe blood sugar drops and from my cervical stenosis. We are trying to figure out all of my triggers. I’ve had them my whole life and just recently found out they were seizures after blacking out and getting 2 back to back concussions. I also have gastroparesis which triggers seizures when I eat foods I’m allergic to due to MCAS.

Jump to this post

My heart aches....I can remember it seemed like a storm of issues and when could I have some manner of control?
That is what 'I hear' from your writings. You have a medical buffet...that is how I used to describe myself.
I hope you have a healthy support system, do you?
How soon is your appointment for your EEG? Since you have so many issues that act as triggers, would you consider going to the Mayo Clinic or are you in an area where a city teaching hospital or university is available.
I've had a laundry list since age 15; so many things I've not mentioned.
Your primary key is good physicians who look at the whole picture. My heart to you...💞

REPLY

I’m finally getting a good team of doctors with one who wants to look at me and my issues as a whole person not passing me off to one doctor to the next as not they’re problem. I’m fighting for my life and I’ve been going through everything since I was a small child, I am 46 now.

REPLY
@chefdecemberskye

I’m finally getting a good team of doctors with one who wants to look at me and my issues as a whole person not passing me off to one doctor to the next as not they’re problem. I’m fighting for my life and I’ve been going through everything since I was a small child, I am 46 now.

Jump to this post

Oh, my @chefdecemberskye Yeah, I spelled it!
That is some serious good news in that post!! #l that you finally have a comprehensive medical team because that is just what you need. They must be really qualified to look at ALL of you. #2 That you are 46~~you have so much ahead of you to be enjoyed for many years once you have a measure of treatment that gets things under control.
Since my seizures started at 15 in my senior year of high school, I didn't make my graduation. Though I angrily vowed not to return to school, when September rolled around, off to school I went, and I graduated in 1958. As a snarly teen, I griped it was with a bunch of strangers. That wasn't true. One of the kids in my class was my brother. 😉😉 You are a strong survivor, be your own advocate; nobody knows you better.
I've enjoyed a full life, and even now, at 83, I feel fortunate. I have a strong will and that is what it takes for somebody like you too!! I know you are strong because of what you have experienced and are still fighting for 'better'. 💞 Please keep in touch......

REPLY

Hi
it sounds like it could be an aura at first - I get quite light headed and then feel like I'm about to faint very odd when I have nocturnal seizures but it's a warning that I may have a seizure.
I used to have absent mals when I was a child - you just stare into space
I'm glad to hear that you are having an EEG as then your doctor will be able to work out what is happening and he'll put you on the right meds
Good luck. My seizures are FINALLY quieting down after puting up with them for 40 years - I had grand mal seizures in the 90's and they were vile !

REPLY
@salpal01

Hi
it sounds like it could be an aura at first - I get quite light headed and then feel like I'm about to faint very odd when I have nocturnal seizures but it's a warning that I may have a seizure.
I used to have absent mals when I was a child - you just stare into space
I'm glad to hear that you are having an EEG as then your doctor will be able to work out what is happening and he'll put you on the right meds
Good luck. My seizures are FINALLY quieting down after puting up with them for 40 years - I had grand mal seizures in the 90's and they were vile !

Jump to this post

@salpal01 That was such a great post! I've connected with a woman who started having seizures in her 70s, and it turned her life upside down; she is doing well now.
So glad you are doing well and you can inspire others.💞

REPLY

An EEG may not show seizure actiity, some of mine show abnormality while others are normal. You may need more then one EEG for a proper diagnosis. I've been to several neurologists, all but one said my sympthoms indicated seizures, one said my EEG was normal and therefore, I couldn't be having seizures. One doctor presribed the maximum allowable dose of Trileptal which turned me into a zombie. The zoning out in my case was diagnosed as minute seizure, don't know if that would appy to you. I also have grand mal seizures, twice while hospitalized, my blood pressure more then double causing critically high blood pressure (CHBP). My MRI scans show CHBP has caused several strokes, there's evidence of permanent damage, fortunately none with serious long-term impact. Stay positive, you will be able to bring them under control.

REPLY
@chefdecemberskye

I’m finally getting a good team of doctors with one who wants to look at me and my issues as a whole person not passing me off to one doctor to the next as not they’re problem. I’m fighting for my life and I’ve been going through everything since I was a small child, I am 46 now.

Jump to this post

Hi @chefdecemberskye
Happy to hear that. I good doctor who treats us as human beings makes an enormous difference. At least it was what I have experienced. After being treated by 8 different doctors who prescribed me medications I could not stand, I finally found an epileptologist that respects my nature and body. So, keep fighting!!!
I have recently joined a study by a neurologist on the relationship between the gut and brain in people with neurological disease as my seizures have reduced by 60% when I took gluten out of my diet. I am now on a Fodmap diet as I have been diagnosed with SIBO (small intestinal bacterial overgrowth) most probably caused by some medications I took in the past. As you also have gastro issues, worth investigating that profoundly with a gastro and treating it. It might have a great impact on your life and epilepsy
Keep walking, always!
Chris

REPLY
@grammy82

Oh, my @chefdecemberskye Yeah, I spelled it!
That is some serious good news in that post!! #l that you finally have a comprehensive medical team because that is just what you need. They must be really qualified to look at ALL of you. #2 That you are 46~~you have so much ahead of you to be enjoyed for many years once you have a measure of treatment that gets things under control.
Since my seizures started at 15 in my senior year of high school, I didn't make my graduation. Though I angrily vowed not to return to school, when September rolled around, off to school I went, and I graduated in 1958. As a snarly teen, I griped it was with a bunch of strangers. That wasn't true. One of the kids in my class was my brother. 😉😉 You are a strong survivor, be your own advocate; nobody knows you better.
I've enjoyed a full life, and even now, at 83, I feel fortunate. I have a strong will and that is what it takes for somebody like you too!! I know you are strong because of what you have experienced and are still fighting for 'better'. 💞 Please keep in touch......

Jump to this post

Thank you so much for the positive encouragement!

REPLY
Please sign in or register to post a reply.