Tonic upward stares occurring daily

Posted by fbutterw20 @fbutterw20, Jun 20 2:33pm

Our 37 year old son has epilepsy.
In August of 2018 he had a seizure and fell, resulting in a TBI. Although he had regained his mobility and ability to do all daily care on his own he was still having seizures. In July of 2019 he had an unfortunate depth electrode study done at Mass General hospital resulting in a hemorrhage.
He has not regained mobility, now has 2 VPI shunts to manage his cerebral pressures and experiences daily periods of tonic upward stares lasting from an hour to longer than 14 hours.
No one at Mass General can explain what these are.
They resemble seizures except they do not show up on an EEG and cannot be broken with the usual rescue medications.
This has been going on for 11 months!
Has anyone else had a similar experience or familiarity with someone who has?

Liked by Leonard

Hello @fbutterw20 and welcome to Mayo Connect

I'm so sorry to hear about your son's seizures. I would like to invite some other Members of the Epilepsy discussion group to comment on this like @jakedduck1 and @lsittll.

Have you sought a second opinion for him? If not, Mayo Clinic has an excellent department for epilepsy/seizures. If you would like to get an appointment for him, here is the number, http://mayocl.in/1mtmR63.

I suppose the medical team at Mass General has tried different meds?

Liked by Leonard

REPLY
@hopeful33250

Hello @fbutterw20 and welcome to Mayo Connect

I'm so sorry to hear about your son's seizures. I would like to invite some other Members of the Epilepsy discussion group to comment on this like @jakedduck1 and @lsittll.

Have you sought a second opinion for him? If not, Mayo Clinic has an excellent department for epilepsy/seizures. If you would like to get an appointment for him, here is the number, http://mayocl.in/1mtmR63.

I suppose the medical team at Mass General has tried different meds?

Jump to this post

He is on 5 different seizure meds now.
The staring episodes have destroyed his life.
Once he falls into a stare(usually late morning or early afternoon the rest of his day is gone.
Falling asleep is the only way he seems to be able to break the stare.
We live in Maine so unfortunately an appointment at Mayo Clinic would be hard to arrange.
With 2 VP shunts I doubt he could safely fly.
The neurosurgeon who has performed all of his operations so far is recommending as a last effort an Endoscopic 3rd Venticulostomy but has said that it may not better his situation and could further complicate his cognitive and speech deficits.

REPLY

@fbutterw20,

This sounds like such a difficult place for your son and you. Is there any other facility that specializes in seizures where you could obtain a second opinion?

Liked by Leonard

REPLY

Mass general hospital in Boston (where the failed depth electrode test took place) and also Brigham and Women’s Hospital in Boston, which is supposed to have a good Neurosurgery program.
We will probably go there for a second opinion as next step in treatment.
Closely affiliated with Mass General but a separate entity

REPLY
@fbutterw20

He is on 5 different seizure meds now.
The staring episodes have destroyed his life.
Once he falls into a stare(usually late morning or early afternoon the rest of his day is gone.
Falling asleep is the only way he seems to be able to break the stare.
We live in Maine so unfortunately an appointment at Mayo Clinic would be hard to arrange.
With 2 VP shunts I doubt he could safely fly.
The neurosurgeon who has performed all of his operations so far is recommending as a last effort an Endoscopic 3rd Venticulostomy but has said that it may not better his situation and could further complicate his cognitive and speech deficits.

Jump to this post

@fbutterw20
Good evening,
I’d like to welcome you to the Mayo Clinic Connect website I’m glad you reached out there’s a lot of good people here with a multitude of experiences.
I’m sorry to hear your son is going through this.
I’ve had epilepsy for 53 years, also Intractable and I know it can be difficult for everyone involved.
I was wondering if you would be willing to share some additional information.
1. What type of epilepsy did your son have prior to the hemorrhage? Since he fell I am assuming he has generalized Tonic-Clonic seizures. Regardless of the type how often was he having seizures prior to this procedure?
2. Which medications is he taking?
3. When he’s staring does he blink, are his eyes open wider than usual? Is he unaware of his surroundings during these episodes? Have you ever touched his eye during these episodes to see whether or not there is any reflex movement?
4. Has he ever had an abnormal EEG? Has he ever had any EEG during one of these episodes?
5. Has any doctor ever mentioned the possibility of Psychogenic Non-epileptic Seizures (PNES)?
6. Were they doing the intercranial EEG to locate the seizure focus in preparation for additional epilepsy surgery? Have any of his previous surgeries resulted in fewer seizures?

Although epilepsy surgery has helped many people I’m not an advocate for it and have turned it down on numerous occasions.
If the doctor who did the EEG procedure that caused the hemorrhage personally I wouldn’t trust him to do any surgery.
As Teresa mentioned (@hopeful33250) a second opinion is usually helpful but since the Epilepsy is intractable I would suggest an epilepsy center. There is a level 3 Epilepsy Center in Scarborough, Maine which I imagine has an Epileptologist on staff. Below is a link to locate all Comprehensive Epilepsy Centers. You can either in her Zip Code or a state or just choose all it’ll show all epilepsy centers in the United States but if I were you I would definitely have your son see an Epileptologist.
Wishing you all the very best of luck,
Jake

REPLY

Seizures are tonic clonic. Since fall seizures were on increase but following depth electrode procedure resection of some of brain scar tissue was done while addressing hemmorage and seizure frequency and intensity decreased.
I believe someone mentioned the PNES or I saw it in my online research.
Current thoughts are subclinical seizures remote possibility and more possibly oculogyric crisis.
Eyes do blink during episodes and gaze will shift periodically but always up. Additionally he is able to respond during most of the episode but slowly.
He has aphasia so responses are limited.
We have aligned ourselves with the Neurology group in Scarborough and have had our 1st in person meeting this week.
Continue to update Epileptologist in Boston at MGH however since she has treated our son since beginning of 2019.
Seizure meds are Depakote Keppra Vimpat Aptiom and Onfi.

Thank you for your interest in our Son’s situation.

REPLY
@fbutterw20

Seizures are tonic clonic. Since fall seizures were on increase but following depth electrode procedure resection of some of brain scar tissue was done while addressing hemmorage and seizure frequency and intensity decreased.
I believe someone mentioned the PNES or I saw it in my online research.
Current thoughts are subclinical seizures remote possibility and more possibly oculogyric crisis.
Eyes do blink during episodes and gaze will shift periodically but always up. Additionally he is able to respond during most of the episode but slowly.
He has aphasia so responses are limited.
We have aligned ourselves with the Neurology group in Scarborough and have had our 1st in person meeting this week.
Continue to update Epileptologist in Boston at MGH however since she has treated our son since beginning of 2019.
Seizure meds are Depakote Keppra Vimpat Aptiom and Onfi.

Thank you for your interest in our Son’s situation.

Jump to this post

Hello @fbutterw20,

From your post, it sounds as if you have already had an appointment at Scarborough. How did that go? Any new information?

Liked by Leonard

REPLY
@hopeful33250

Hello @fbutterw20,

From your post, it sounds as if you have already had an appointment at Scarborough. How did that go? Any new information?

Jump to this post

Not really.
Is referring us to the local Epilepsy neurosurgeon for his review of the test results and recommended course of action going forward.

REPLY
Please login or register to post a reply.