Frustrated and worried about my husband

Posted by lspencer34 @lspencer34, Mon, Mar 25 11:10am

My husband unexpectedly had a seizure in his sleep about 5months ago which scared me and him and left us curious. He was sent to see a nurse practitioner in the neurologist dept who did a Sleep deprivation EEG showing him having 4 seizures during his test. She was unsure of exactly why he was suddenly having seizures but stated that he was having right side focal seizures and they found a smal granuloma in his left temporal area but stated he wasn’t causing the seizures 🤔. His medicine was changed once and now he is on Topamax 200 mg daily at night. He has also been diagnosed with Obstructive Sleep Apnea also. But he has not had another seizure for 5 months until Thursday and it was while he was driving (yes I know he was not supposed to be driving but he gave me so much hell I allowed him to drive to work and home) 😭 but his accident was so bad and he walked away with only pain but y’all he doesn’t remember anything from the accident and I’m worried. I do believe he had a seizure. I’m also concerned because since being on Topamax he has moments when he unexpectedly laughs during our conversations and won’t respond to me when it happens and after he doesn’t recall doing it. Now I’m noticing he is having difficulty at times not all the times but sometimes with comprehension or getting his words out 😭😭😭😭. So this is where I’m at a frustrated, worried, emotional and praying wife wanting help, wanting a second opinion and some answers. I’m sorry for the long message but I wanted to tell y’all everything from the beginning to now.

Hello, @lspencer34. I can understand that you would be worried for your husband with his seizures and now this car accident during a potential most recent one. He is fortunate to have you and your concern for him.

With these experiences and also some trouble with comprehension and getting words out, plus some apparent memory lapses, it's understandable you are frustrated and looking for answers. I'd like to call on @dawn_giacabazi @allen1 @hopeful33250 @valm @jenniferhunter @jakedduck1 @pamlws2 to join this conversation and provide some insights and support as you seek to help your husband.

@lspencer34 – has your husband returned to the nurse practitioner in the neurology department or another medical provider since this accident? If so, what did they say about what might be going on?

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I would strongly suggest finding a neurologist who specializes in Epilepsy or Encephalitis. When I was in the hospital, another neuro that first saw me was ready to send me home… and my wife started crying and asking what she was supposed to do when I had the next one and how blue was “too blue”. The nurse intervened and between her and her boss, they managed to keep me in the hospital. Thankfully, that first neuro went on vacation or was off and another came in.. We showed him my video of how it looked when it first started and he studied it the whole night, and the next morning came in saying “I think I know what you have”.. He was a motion disorder neurologist. and one who I will be forever grateful for. Although a neurologist is a specialist in and of itself, they each refine their specialty into different areas. Find one that will take the time to study your symptoms and who sincerely cares and wants to help you.

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@lspencer34
The effects your so worried about are quite common. It's not at all surprising hubby doesn't have any memory of the accident or even memories prior to it wouldn't be that uncommon. Has your hubby been having difficulty sleeping? That alone could cause a seizure. Is he using a CCAP or BIPAP?
I refuse to take Topamax or as it is also know
Dope-a-max. That drug can cause memory issues as all Anticonvulsants can. Also weird mood changes, concentration and speech problems (Aphasia.) Although I wouldn't take Dope-a-max under any circumstances and I would suggest he take a different Seizure medication, however all are going to have side effects, some significant, the most common are fatigue, dizziness/vertigo, nausea, vomiting, blurred vision, ataxia, tremor, nausea, headache. Some of the more serious though less frequent include Neuropathy, serious eye problems (Topamax) including blindness if immediate help isn't received, cancer, movement disorders including Tardive Dyskinesia, etc.
I've taken AED’s for 52 years and have Polyneuropathy that started on the bottom of my feet and now is up past my waist. I also have tremors mostly in my arms and hands. Have had to be hospitalized numerous times for Ataxia although I can't be sure the seizure meds were responsible.
The things you describe are quite common in Epilepsy and the medication he's taking. Seizures themselves can contribute to these symptoms although I wouldn't think so in your hubby's case. Seizures usually cause problems when they are more severe like many or cluster Tonic-Clonic or when the seizures don't stop, known as Convulsive Status Epilepticus but there is Non-convulsive Status (Focal Seizures.) A second opinion is always advisable and maybe the next Neuro will give a different AED. Dope-a-max is usually given as a second line medication (Add on drug.) Try not to worry, it won't help anything.
Best of luck to you both.
Blessings,
Jake

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@lspencer34 – wondering how your husband is doing related to the seizures you shared about, and how it's going with the topiramate (Topomax)?

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I can certainly relate to your experience, except from the husband's side of the experience you are going through.
My seizures began about two and a half years ago. The first experience was forgetting my way home from work on a route I had done for over 10 years.
The emergency room staff had no clue as what was wrong. The next time I passed out at a gym and was taken to the emergency room. Once again the staff had no suggestion as to what was could be wrong.
My seizures began to happen more often and my primary physician referred me to a Neurologist. He prescribed Lam and I have one one seizure since then and that one was caused by not following his instructions exactly.
My wife has been driving me to work every day and any other place I need to g
My neurologist referred me to a neuropsychologist for testing. The results of that visit I will find out this week.
If the pros cannot find a solution to the memory problems (both short and long term), I will be forced to give up a 50 year career in a business I love.
Another thing that your husband and I have in common is that we both married amazing women. He and I are both very fortunate.
Bruceg

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@lspencer34
Hi, This may be a long shot but I just reread your post and was thinking perhaps your husband is experiencing Gelastic seizures which are Focal Seizures. These are sometimes referred to as Laughing Seizures. Although the person is laughing or chuckling during these seizures the person is not happy and in fact may be frightened. Onlookers often don’t know it’s a seizure possibly because the victim is aware of what is happening so it may appear they are willingly laughing but that’s not the case. They have no control of the laughter. These seizures don’t usually originate in the Temporal lobe but it is possible. You might want to ask your Neurologist about this, especially since there is a lesion on his Temporal lobe.
I’m curious how accurate a scalp EEG is in locating a seizure focus.
Good luck,
Jake

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@jakedduck1

@lspencer34
Hi, This may be a long shot but I just reread your post and was thinking perhaps your husband is experiencing Gelastic seizures which are Focal Seizures. These are sometimes referred to as Laughing Seizures. Although the person is laughing or chuckling during these seizures the person is not happy and in fact may be frightened. Onlookers often don’t know it’s a seizure possibly because the victim is aware of what is happening so it may appear they are willingly laughing but that’s not the case. They have no control of the laughter. These seizures don’t usually originate in the Temporal lobe but it is possible. You might want to ask your Neurologist about this, especially since there is a lesion on his Temporal lobe.
I’m curious how accurate a scalp EEG is in locating a seizure focus.
Good luck,
Jake

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Hello @jakedduck1,

Just curious: What other types of EEG are there besides a " scalp EEG?"

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@hopeful33250

Hello @jakedduck1,

Just curious: What other types of EEG are there besides a " scalp EEG?"

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@hopeful33250
Hi Teresa,

These require brain surgery and are primarily used to find exactly where the seizure is originating, know as the “Seizure Focus.”

Subdural EEG
Small electrodes are place directly on the surface of the brain.

Depth EEG,
Electrodes are placed deep inside the brain with the aid of guided imaging.

Ready to schedule??, lol

Jake

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@jakedduck1

@hopeful33250
Hi Teresa,

These require brain surgery and are primarily used to find exactly where the seizure is originating, know as the “Seizure Focus.”

Subdural EEG
Small electrodes are place directly on the surface of the brain.

Depth EEG,
Electrodes are placed deep inside the brain with the aid of guided imaging.

Ready to schedule??, lol

Jake

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@jakedduck1 that is interesting, when would a doctor do those types of EEGs?

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@hopeful33250

@jakedduck1 that is interesting, when would a doctor do those types of EEGs?

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@hopeful33250
Hi
Before brain surgery when more precise brain mapping is needed to pinpoint the area that’s causing the seizures so they know exactly what area to remove.
Jake

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@jakedduck1

@hopeful33250
Hi
Before brain surgery when more precise brain mapping is needed to pinpoint the area that’s causing the seizures so they know exactly what area to remove.
Jake

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@jakedduck1 Thanks for the explanation. Have you ever had this done?

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@hopeful33250

@jakedduck1 Thanks for the explanation. Have you ever had this done?

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@hopeful33250
Hi,
Absolutely not!!! But they wanted to. I always refused brain surgery. Although I can’t help but wonder if it would have helped I don’t regret my decision.
I’ve only had the regular, Sleep Deprived, Sleep & Video EEG.
Jake

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@jakedduck1 Hmmm, that sounds difficult. How did you fare through it?

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I just heard from my neuropsychologist. The results of the testing were that my short term memory is bad and the probably a result of the seizures and Lamotrigine. He gave little hope for the improvement of the memory.
If your husband's seizures are under control, he may be better off. My seizures occurred over a two year period before finally being being brought under control. This was mainly due to not being sent to a neurologist by other doctors.
Give my best to your husband and hang in there like my.wife.has done.

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