Looking for some help😕

[TaleenaD]

Hey y’all! So I’m 19, chronically ill, and an autistic SAHM of two special needs babies. I haven’t been diagnosed but I wanted to find a place where I could talk about what I’ve been experiencing and if I should keep my appointment with neurology. I’m just going to do a list of my symptoms (they also think I may have MS some of these could be my illness) also both my parents do have epilepsy and I have EDS

sudden change in awareness
unusual sensations or thoughts
involuntary twitching
Roller coaster/sea sick feeling
Brain fog
Can’t understand what people are saying
Balance issues
Eyelid flutters
Loss of mobility in my left side
Spasms
Cataplexy (I don’t think I’ve ever been able to stand when I cry or laugh)
Heavy feeling of body
Vomiting (severe probably my worst symptom but I believe my autism becomes overstimulated when it happens causing me to puke)
Weakness in limbs (this is constant but when I have these episodes I can’t even squeeze a sour cream pouch)
And a bunch more now what I’m confused on is nicotine and hot showers are my only solution so far. I have a vape that uses only 4 ingredients, but no matter the time if I get the roller coaster feeling I’m able to kind of prevent it or the severe symptoms at least by taking a 10 minute break with my vape then a hot shower. I was thinking maybe I’m having severe withdrawals since it gets really bad every 7-8 hours if I try and put it off. I’ve talked to people and they said they’re withdrawals were only irritability and a headache. If anybody can help! I also saw a few things that in some people nicotine reduces seizures so I’m not sure

 

[Porkette]

Hi TaleenaD,

Welcome to the forum! I'm sorry to hear you are having a few problems. I will tell you that there is a connection between autism
and epilepsy for some people and the fact that it runs in your family shows that it could be genetic.

In regards to you having balance issues, and spasms that could be from smoking along with vomiting. I've had epilepsy for
50 yrs. and a lot of what you are discribing sounds like it could be MS, I have an aunt who had MS and she had most of the
symptoms that you are describing. If I may ask do you ever feel confused or have a loss of memory for a few seconds and
then feel tired and have a headache? If you do then you may have had a seizure. Start keeping track of all of this by getting
a calendar and write down what time it started and show this to your neuro. by doing this the neuro may be able to see a pattern
in the possible seizures and what time of day/night they are happening. A lot of it could be hormone related so be sure to write
down when you start and stop your cycle each month also.
A lot of what you have described sounds like a seizure to me now the Dr. will have to do tests on you to find out if you are
having seizures and what area of the brain they are coming from. In the mean time start taking vitamin B12 1000 mcg. once
a day. Stay away from diet soda or anything with nutra sweet in it and cut back on the carbs and starch foods and see if that
helps you. I wish you the best of luck and May God Bless You!

Sue

 

[Nakamova]

Hi Taleena -- welcome to CWE.

Many of the symptoms you list are characteristic of simple partial seizures (which can feature unusual sensations all of varieties -- physical, physiological, emotional, psychological). And having two parents with epilepsy would suggest that epilepsy is a likely diagnosis. So I'd say that keeping that appointment with a neuro is a good idea, especially because untreated seziures can potentially progress in severity or frequency.

As for whether nicotine is hurting or helping, it's tough to say, since your use is fairly steady right now. Generally speaking, stimulants such as nicotine can be seizure triggers and should be avoided. While there needs to be more data, vaping has been linked with new onset seizures, both partials (esp. “brain fog”) and the convulsive kind. See

https://www.sciencenewsforstudents.org/article/vaping-emerges-as-possible-trigger-for-seizures

If you can find a way to quit that would be great for your brain health, whether or not you are diagnosed with a seizure disorder.

Definitely eel free to check back in with more questions.

Best,
Nakamova