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Have you felt a seizure like this?

Hello all - I am new here to ask about something. My boyfriend is 22 yo male with a family history of seizures (mother is on medication for grand mal) and has been seeking treatment for severe sleep apnea. He has a BMI around 20 and does not drink or smoke and is on no medication. Recently, he began attending grad school and does not have health insurance except through his parents. Here is where it gets tricky - a month ago he was with me and had what I thought was a seizure. I walked into the room and he was just standing starting at the wall and was shaking, almost trembling. I got him to sit on the bed but could not move his limbs because they were really stiff and still shaking slightly. He could still talk to me and kept saying he was fine so in the moment I didn't think it could be a seizure. He also kept saying he was getting things but he didn't know what he was hearing, he only knew that he was terrified by whatever he was hearing. He was just staring at the washing machine (next to his bed) saying he was terrified but he didn't know why at all. And he kept saying don't think I'm crazy for hearing things. This lasted for a few minutes, tops, and then he stopped shaking and could move a little. But then it would start again after a couple minutes and last four twenty, maybe thirty seconds. This went on for like 15 minutes of being able to tell me he's fine and look at me to trembling and looking completely terrified but still cognizant of me - he said he could see me but it was like he could see something else that was terrifying but he couldn't name it. One of the last 'episodes' he had lasted about a minute but his eyes rolled back and he briefly lost mostconsciousness. It was so brief though and he kept saying don't worry I'm fine that I figured it was maybe a bad panic attack (I have those). Afterwards, I looked up online what this might be because I was really worried for him. I came across seizures as a possibility. Both of us know that the only way to know for sure is to go to the doctor and have tests done but he can't go to the doctor because although he is insured through his parents, that are refusing to let him get medical treatment for any of this (long story). After this, he's decided to drop out of grad school for the time being in order to figure his health out because it is making it impossible to function or complete work like he used to be able to. He's getting a job as soon as the semester is over in early December in order to be able to afford the health care he needs, but health insurance that he can use won't kick in immediately. In the meantime, my question is has anyone had seizures like this before? Where did you start, diagnostically speaking (who did you see)? He has had one episode lasting 30 seconds since then where his entire body clenched up and he couldn't move but it didn't happen multiple times, it was just once and then no more. Thanks ahead of time for any help! (Also apologies if this is in the wrong part of the forum!!)


Re: Have you felt a seizure like this?

It seems like a seizure, however, only a neurologist can diagnose him. They appear to be partial seizures, but it can also be a psychiatric condition, street drug effects etc. please get him to seek medical attention.

Re: Have you felt a seizure like this?

Do your best to help your friend stay safe until he sees a doctor and receives a diagnosis.  As much as I hate to say it, he should not drive.  Also he should not swim or take baths, climb a ladder, ride a chair-lift (if he snowboards or skis) . . . or anything else you can think of where he would be in danger if he had another one of these episodes.  Oh, and turn the heat down on the water so that if he is having a shower he will not burn himself should he have one of these episodes.  We can't hole ourselves up, but there are some general precautions people with seizures can take.  Do you live with him?  If so, you will be a great help to him to keep him safe.  And as the others have mentioned, he really should see a specialist sooner rather than later.  Good luck, and feel free to come back here if you have questions. 

Re: Have you felt a seizure like this?

From what I know about different types of seizures it seemd like it couuld be complex partial seizures but without the tests being run it could be other seizures.

As for what seizures to others feel like a seizure is different with each and every person with epilepsy. I have many types of seizures. Auras are seizures in themselves and in those people may hear, smell or see things.

When I started having seiaures it started with wierd feelings in my head. (an aurs to me) Others were strange feelings in my right hand. It would start to rise. (focal motor complex partial). I just passed those off as wierd things happening since I was 12. My first known seizure was a grande mal. Which happened at school. I have been told what I did but since I lost conciousness I do not remember anything until I was being carried thru the nurses office abd being put on the bed. I can say that there were times I was written up for day dreaming in class in the 6th grade. However I was not necessarily day dreammg since I was among the top 5 class when we had pop quizes and tests.

If his eyes rolled bad and his body as stiff and trembling then it could very well be a seizure. Understand that each episode like those tht you discribed could be a seizure.

The first person to say I had epilepsy was a general practitioner. I was tested many times with EEG's and none showed any abnormality. But then that was in 1962-63. I was entered into a hospital for testing and those were not nice tests and todays tests are better and don't hurt. The last tests they ran on me was another EEG. I was tired and during the EEG I fell asleep. During that EEG they did find seizure activity (anormality).

Try not to delay and he does need to get things cheched out. The sooner it is done the easier it will be to find medications and procedures that can be used to get these episodes stopped. In other words there is a larger possiability he can get seizure free.

I would also suggest you get the diary near the top of this page and use it to discribe what you see and what he says and take that to the doctor. It can be printed or if you know which doctor he will see you can give he permission to look at it.

I hope this helps.


Re: Have you felt a seizure like this?

Thanks for the response. He has been trying to contact a GP in this area who can try and work with him on a payment to get the tests done. He's trying to get Medicaid in order to get the testing done and get a job to at least afford that. I'm just glad someone else gets it. Thanks for the advice, I'll try to get the journal/diary started to bring that in.
Thanks again!!

Re: Have you felt a seizure like this?

I need to let you know that GP's today can and some do diagnose but they also have sepcialists they work with or get information from. My GP or PCP uses specialists but he can also tell me what is wrong in some cases. My problem is he works at one hospital and my neurologist works at another. It wasn't easy getting them to work with each other. But I have had the same neurologists since 1970 and the PCP since 1997.

Generally if the GP has questions he will deal with it or send him (your friend) to a speicialist near his (the GP's) office.

The diary can be printed out but then it can also be brought up by the doctor if you give him permission. The information you put in it can help when making the diagnosis and it can help determine procedures or medications that can be used.

Hope he gets the care he is needing and do post with hte information. Many of us in here are doing this to help others learn to deal and live with epilepsy. I know it isn't easy but if he had dreams and goals he should keep them. He may have to take another road to achieve his goal but it can be done. In high school I was not allowed to work in any shop. So I took drafting. By the time I was a junior I could take a motor apart on paper. I could also take one apart and put it back together in our garague.

Just use what some people do not even think of and that is COMMON SENSE



Re: Have you felt a seizure like this?

Thanks for the response. He has been trying to contact a GP in this area who can try and work with him on a payment to get the tests done. He's trying to get Medicaid in order to get the testing done and get a job to at least afford that. I'm just glad someone else gets it. Thanks for the advice, I'll try to get the journal/diary started to bring that in.
Thanks again!!

Re: Have you felt a seizure like this?

I'm sorry to hear this happened. It sounds like a complex partial/simplex seizures. The same thing happens to me except the no trembling & the long lasting part.

He needs to get to a doctor soon. If he has a MRI or EEG they would be able to find out. Insurance or not, he shouldn't wait as it could get worse. A doctor may put him on meds right away where he can be ok & live a normal life without it happening again.

He should've never have dropped out. The worst thing for him is to let this rule his life instead of getting it taken care of. You hope with all this & school he doesn't fall in a bad depression.

I hope it gets better & it doesn't happen again.

Re: Have you felt a seizure like this?

I have not heard of seizures exactly like that but it sure sounds like some kind of seizure.

Having said that, I have a simple 'stop gap' that you might give a try. Melatonin. It's available over the counter and the pharmicist can let you know more about it but it regulates your sleep patterns and also regulates the seratonin that your brain produces, while sleeping.

Being sleep depraved in a top symptom and if you can help with his sleeping, you just may head off some of the activity that is going on.

a doctor advised me to take 9- to mgs, not the 3 that I was on. It makes a HUGE difference in my sleeping.

If you do have him start taking it, you will know if it is working because if he doesn't dream now, he probably will start after a few days. I did...(but not on the 3mg).

I realize you said this was a 'long story' but insurance or not, get him to a neurologist and talk with your pharmacist about any drug complications. The Melatonin is very inexpensive and available over the counter.

Re: Have you felt a seizure like this?

Yes I have.  He needs to see a neurologist ASAP.  No one can be positive these are epileptic seizures until he has been diagnosed.  The probability is in the high 90's% that they are.  He might be able to get complete control over it with medication.  If he doesn't get treatment, it could kill him.  Most AEDs (anti epileptic drugs) are available to those who can't afford it through the drug companies and other sources.  Don't let being poor keep him from obtaining the help he needs to save his life.  BTW, most of us experience 'denial' after initially being diagnosed.  Expect to deal with it for a while.

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