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Has Anyone Else Had Difficulty Recognising Constantly Reoccurring Symptoms As Epilepsy Side Effects?

A MyEpilepsyTeam Member asked a question 💭

Your eyes twitch but you put it down to eue strain. Your muscles twitch but again it's too much moving around. Your tongue is sore in the morning but maybe it's a one off. Your memory or sense of where you are is a family joke but you know, everyone forgets stuff. When you do put it together nobody thinks it's side effects or your just blowing things out of proportion.

September 1, 2020
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member ,

First of all I’m sorry Hear about your hospital incident. I’m also very angry and upset ,what they did to you . If your were in an ambulance, they normally bring you into the ER not the waiting room.

I don’t know how severe your seizures are , but if your not be watched , you could of got injured more and worse yet you could of been SUDEP ( Sudden Unexpected Death in Epilepsy ) .

They needEd to be bring you into the ER , so you could be watched by a nurse . Even give you seizures recovery meds . That can help slow down to even stopping the seizures. Then once your Conscious you will be more alert and can possibly talk with the Dr. I say possibly, because after a big or many Cluster seizures, you’ll still be confused on what’s happened, where your at , or even be able to talk .

Everything they did was fully wrong in procedures.

September 6, 2020 (edited)
A MyEpilepsyTeam Member

I am so sorry you've had such a horrible experience. I have absence seizures and more symptoms than I wrote. I also have drops. This site is the best source of information about epilepsy for epileptic people written by epileptic people. Not just a few paragraphs in a pamphlet. I really hope your neurologist can sort something out for you. Sending you hugs.

September 6, 2020
A MyEpilepsyTeam Member

Most of the symptoms you mentioned Above sounds like Myoclonic seizures. .
Your tongue being sore , is from biting it , while you are seizuring In your sleep.
My tongue is horrible.

I’ve bitten my tongue so many times and I can’t have a lot of salty food . I enjoy some salty foods and snacks . But after so much , my tongue starts to hurt and It feels like a lot of welts are foming on the tongue. That’s when I have to stop .

September 4, 2020
A MyEpilepsyTeam Member

Yes. I have had some of the above at various times (especially back when I was having the complex partial and full seizures), but some of them are always there as a result of Epilepsy and side effects from medicines or after effects from an aura. However, I have others that I have out of the blue like not recalling what day it is or the name of a niece or nephew or someone else (not siblings at any time yet, but sometimes the name of the spouse of one of them) that I usually have no trouble at all remembering. Most people do not understand this.

September 3, 2020
A MyEpilepsyTeam Member

I have side effects but unsure if they are caused by my seizures, transposition of great vessel, high blood pressure, diabetes, or thyroid.
Side effects being tired, constantly in the bathroom, depression, no energy, painful joints (not fingers, can't sleep on right side cause hip hurts, shoulders hurt to raise them up).
Some things I know but others not sure of.

September 6, 2020

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