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sharin
@sharin

Posts: 4
Joined: Feb 13, 2016

I have a son that is 52 years old and has had seizures since he was 3.

Posted by @sharin, Feb 13, 2016

My name is Sharin. I have a son that is 52 years old and has had seizures since he was 3. We have seen many doctors. He has had several EEGs and has taken Dilantin, Depakote and is now on 2 anti convulsive meds, Lamotrigine an topimarite. He just had a MRI last Monday and the results showed no brain disorders. His last Grand Mal seizure was the worst. He had a convulsion that lasted 10 minutes and at the end he was screaming he couldn’t breathe. When the paramedics got here they told me to back off and let him get up. He got to his knees and passed out. When we got to the hospital they did not do any tests of any kind and sent him home. Since then he has difficulty understanding things, he forgets what he is doing, he can’t remember his past, and he hears voices. He panics when a stranger or someone he doesn’t recognize comes near him. He was also diagnosed with Diabetes in 2007 and takes insulin and Metformin. I don’t know what to do to help him. The doctor he has now doesn’t seem to be too concerned about all of his conditions.

REPLY

Hi @sharin. My name is Rebecca – I’m one of the community moderators here at Connect. I’m sorry to hear about what you and your son are going through. I know how frustrating and scary it must be to not have answers.

It might help to know that there are other people on Connect who have had similar experiences, people like @TabMar and @kevinkelley. If you’d like to talk to them, you can find them here https://connect.mayoclinic.org/discussion/i-have-been-battling-with-a-seizure-disorder-since-i-was-2/

Have you thought about making an appointment at Mayo Clinic? If you go to this page http://mayocl.in/1mtmR63 you can find out more.

@rebeccamcroberts

Hi @sharin. My name is Rebecca – I’m one of the community moderators here at Connect. I’m sorry to hear about what you and your son are going through. I know how frustrating and scary it must be to not have answers.

It might help to know that there are other people on Connect who have had similar experiences, people like @TabMar and @kevinkelley. If you’d like to talk to them, you can find them here https://connect.mayoclinic.org/discussion/i-have-been-battling-with-a-seizure-disorder-since-i-was-2/

Have you thought about making an appointment at Mayo Clinic? If you go to this page http://mayocl.in/1mtmR63 you can find out more.

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Thank you for the information. We live in Vancouver Washington and I have only my pension for my son and I to live on. He is on Medicaid and this seems to be one of the obstacles we face when we deal with his medical issues. I wish he could come to the Mayo Clinic, but financially it is impossible. I have read almost every article I can find from your clinic on Dan’s medical problems and even talked to a person at Standford University Epilepsy Center, but no one can answer my questions. Dan was able to work for 25 years and live with other people and was even married for 12 years, but when he was diagnosed in 2007 with Diabetes something changed. In August of 2008 he had a severe and unusual Grand Mal seizure. It lasted over 15 minutes and he bit his tongue. The convulsion was so bad he shook all across the living room floor. When the paramedics arrived he was lying face down on the floor and couldn’t move. I talked to him and ask him if he could hear me, squeeze my hand. He did. We took him to the hospital, but they didn’t do anything but a blood test. It said he didn’t have enough Depokate in his system. When he returned to work a few days later he would come home and be very irritable. Complaining about his co-workers and everything at work. This was not my happy go lucky son that I had before the seizure. As time went on he started forgetting things. Now his short and long term memory is getting worse and he has a real hard time understanding directions and instructions. I can ask him to do something and if he has to wait a few minutes to do it, he forgets it. He has had a Neuropsychological Evaluation done last year and the psychologist says he can’t be left alone. He can’t drive anymore and he tires real easy. He has seen at least 9 different mental counselors and that many neurologists in the last 49 years. All I want is to know if the medications they are giving him are the correct ones and if there is anything more I can do to help him.

Hi @sharin
Your questions about medications is a good one to ask the primary doctor of your son’s care. Do you have a list of all his medications, dosages, etc that you could take with you to a doctor’s appointment? It might help to have an appointment specifically to discuss the medications he’s taking for all his conditions and symptoms to ensure he has the right medications, dosages and that there are no possible bad interactions. Sometimes doctors prefer that you bring the medications in their bottles and packages.

You may also wish to talk to your pharmacist first. He or she can help answer some of your concerns and questions before you see the doctor.

I’m going to flag @es6903 and @sbruce on this discussion too. You can see their discussion here https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/

Let us know what you find out.
Colleen
Connect Community Director

@colleenyoung

Hi @sharin
Your questions about medications is a good one to ask the primary doctor of your son’s care. Do you have a list of all his medications, dosages, etc that you could take with you to a doctor’s appointment? It might help to have an appointment specifically to discuss the medications he’s taking for all his conditions and symptoms to ensure he has the right medications, dosages and that there are no possible bad interactions. Sometimes doctors prefer that you bring the medications in their bottles and packages.

You may also wish to talk to your pharmacist first. He or she can help answer some of your concerns and questions before you see the doctor.

I’m going to flag @es6903 and @sbruce on this discussion too. You can see their discussion here https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/

Let us know what you find out.
Colleen
Connect Community Director

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Sharin, so sorry to hear of your sons troubles. Seizure control is a journey for sure, and for many not a destination. You mentioned after the last seizure he was screaming at the end that he couldn’t breathe. I’m sure all seizures are different, but when my daughter has gran mal seizures she is OUT and unresponsive anywhere from 15-25 mns before she can make sense verbally. If he can speak right after a seizure, I wonder if there is something else going on? Panic attack? Insulin drop? I’ve had to call ambulance several times and have never had an EMT say to let my daughter get up on her own. The seizure itself wears you out, no wonder he fell, they need to recover, not move unless they are in the street. You need to speak to your dr about having diastat in the house. A 10 minute seizing episode is very dangerous. Do you think the forgetfulness is an effect of the medications, or has he always had it?

@colleenyoung

Hi @sharin
Your questions about medications is a good one to ask the primary doctor of your son’s care. Do you have a list of all his medications, dosages, etc that you could take with you to a doctor’s appointment? It might help to have an appointment specifically to discuss the medications he’s taking for all his conditions and symptoms to ensure he has the right medications, dosages and that there are no possible bad interactions. Sometimes doctors prefer that you bring the medications in their bottles and packages.

You may also wish to talk to your pharmacist first. He or she can help answer some of your concerns and questions before you see the doctor.

I’m going to flag @es6903 and @sbruce on this discussion too. You can see their discussion here https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/

Let us know what you find out.
Colleen
Connect Community Director

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sbruce

My son, Dan, has had hundreds of seizures in the last 49 years. No 2 seizures have ever been the same. There are many factors that could be the cause or the accumulation of all of the factors may be the problem. My biggest hurdle in all of this is I can’t get a doctor to consider listening to me and analyzing all of the last 49 years of his life. Even before Dan was born I had a eptopic pregnancy that ruptured and I was told I was still pregnant the day after they did surgery on me. I was in my first trimester. Dan was born 7 months later, full term and a beautiful healthy looking baby. Of course this was in 1963. Back then the doctors had no idea what to expect from this situation so they suggested a medical abortion. I said NO. Dan was a happy baby and when he was 18 months old he fell off of the back porch and cut his head and had 6 stitches in his forehead on the right side. He had his first seizure when he was 3 years old. He was diagnosed with Frontal Lobe Epilepsy. The only test they had then was a EEG. He had several over the next several years. Dan had several jobs over a 25 year period until he was diagnosed with Diabetes. 8 months later he had a severe and unusual Grand Mal seizure that lasted about 15 minutes. The convulsion was so severe he shook all across the living room floor. His next Grand Mal seizure was in 2013 and that is the one he was screaming he couldn’t breathe after the convulsion. I know how difficult this is to try and understand. I have talked to so many doctors and mental health professionals, that I have come to the point where I think they consider me crazy. This is all true. We are still trying to find the answer to Dan’s loss of short and long term memory, loss of cognitive function, panic attacks, social anxiety disorder, agoraphobia, and tremors in his hands. He is on a lot of medications and I have tried to talk to his doctor about them and I get no satisfactory. Thank you for your input. I hope your daughter gets better medical help than my son has had.

Dan Had a MRI on Feb 8 2016. The radiologist said it was clear. We found a old bill from the hospital and they happen to have the report on a CT scan that was done in 2005. It said Dan had calcifications in both hemispheres of the brain. We are now going to ask his doctor to do another CT scan and see if there is a difference in the 2 reports.

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