A different kind of seizure

[Kathie]

Good Morning, or is it really?
I just wanted to talk. My son Alex had a different kind of seizure last night around 10:00, he went to bed very early around 8:00 because he was so tired yesterday and his head was really sore. We thought it was because he is still healing from the 2 seizures he had Friday night and his tongue hurts down his throat into his ears. But obviously now it was another seizure coming on. I heard him panting in his room and when I went to check he was at his bedroom door with his hands clenched in tight fists to his check with look of utter panic. He said that he was having a panic attack and felt that it was the "destruction of time", I was totally freaked out and started calling my husband. We got him to lie on our bed and thought, maybe he is just having a panic attack and woke up from a nightmare. But as we where watching him he went from too hot to drenched in sweat and then he was freezing with his teetch chattering.
We call the ambulance and my husband got him dressed and downstairs for when the paramedics came. Then he was different sitting in a chair with his fists clenched panting, I asked him if he knew who he was and he said "Not a clue", I asked who I was and "Don't know". In a very load voice and like "who cares?" He didnt' recognize any of us but when his sister handed him a bowl because he felt sick to his stomach, he said "Thanks Mel" and then Hi Ash to his other sister, but when I asked what is her name, Not a clue.
The nurse at the hospital said his blood work showed very low sodium levels and she said no wonder he was not feeling well at all, but the emerg Dr. said it wasn't too low??
Alex could talk by the time we got to the hospital and said he remembered everything that happened but it was like it happened to someone else. And it was like a crazy person on the street rambling. He said the "Destruction of time, he could feel it, smell it, taste it!!
We got home around 4:00 this morning and got a few hours of sleep. He has just gotten up now, I'll go see how he is.
My poor son!! and my poor little family we are a mess right now.
Thank you for listening to my long winded rant.
I appreciate all your help!
Kathie

[skillefer]

Hi Kathie! Sorry to hear about your sons seizure last night. During the post-ictal stage (that time following a seizure, when we're still out of it) things can be really odd. I've had times where I couldn't recognize my own husband and pulled away from him in fright. Other times, I've made kissing gestures to the paramedics....Make sure your son gets some rest today. And you too! You've had a stressful too. Okay? And then you might want to go and call the neurologist. Let him know what happened. It might be that your son needs a medication adjustment, or something. But the doc will probably order blood levels to see if his meds are in the therapeutic range. In the meantime, be strong. You're not going through this alone.

[josieb]

Hi Kathie: For almost 30 years, I suffered from complex partial seizures. Just a year after my brain surgery, shortly after my doctor had started me on Trileptal, I had my only severe grand mal seizure. After having a second seizure a short time later and being "out of it", I was rushed to the hospital, and it was confirmed that the grand mal had been caused due to the low sodium in my blood. The doctors advised that this had been caused by the medication and I was quickly weaned off the Trileptal. The low sodium in his blood could have possibly had something to do with your son's different form of seizure. I wish you both well. Sincerely, Josie

[drarvindr]

Dear kathie
Sorry to hear about alex.How long did this episode actually last ? it sounds kind of like status epilepticus , given the sudden spiking of temperature and the electrolyte anomalies . What further investigations were ordered?As for the outbursts they are very common in the post ictal phase. i once swore very badly at my cousin who was traumatised for days afterwards. How are his seizures now( after this incident)?Be sure to investigate this thoroughly. I also recommend a first aid course because if he gets something like this again , you should know what to do.
I hope he gets well soon. prayers and {{((hugs))}}

[alivenwell]

Did he have exposure to any flu or viral or bacterial infection? Anything like that can throw medication levels off. I ask that 'cause it sounds like he may have had a fever. Did you take his temp? If you're afraid of inserting a thermometer in his mouth, consider one of those newfangled ones that quickly take a temp by holding it against your son's ear. It's quick and harmless.

Did your son recently get a vaccination? They can cause fevers as well.

[Kathie]

Hi Everyone,

Thank you so much for your replies. I am really worried it could be the Trileptal that caused this last seizure, with lowering his sodium levels. Josie, Thank you for your information on the Trilpetal, we are going to lower the dose just a little to see if he starts feeling better, because we feel he is on the Dilantin as well, I will get him into our Family Dr. on Monday and discuss this with her. We are having no luck getting into a Neurologist so far.
Dr. Ramaswamy, this last episode lasted for approx. 20 min. or so. I think in my non-educated way, that the extreme body temps where probably from the low sodium levels, could that not cause something like this?
Alivenwell, I am not sure about any flu or anything, he had been feeling very well up until the first week of september and the seizure just hit him out of the blue. But he did have some stress about going back to college. The other night he did not have a fever we checked.
I appreciate everyone of you replying to this and giving me your opinions or sharing stories, it has been so helpful. Knowledge is power!!!
Thank you for being here for us!!
Kathie

[drarvindr]

Dear Kathie ,
No , hyponatremia is not associated with extreme body temp but status IS and i was thinking along the lines that the hyponatremia( low sodium) caused him to go into status and that caused the high fever.
Low sodium levels are associated with a wide range of symptoms ranging from mild anorexia to confusion , obtundation ( lying on a bed , conscious but unable to get up) , comas and status epilepticus. To ensure that something like this does not happen again it is important to determine the cause of his low sodium. Ask yourself the following questions:

1) Does he drink an abnormally large amount of water?
2) Is it very hot in your area and does he play or work out a lot? After exercise does he drink tap water or gatorade? ( i recommend gatorade as it is basically flavored sweat , so you replace the sodium you lost)
3)How much urine does he produce? If he goes to the loo very little and yet drinks a lot of water it may be a sign of kidney problems
4) Does he have any endocrine problems? (eg thyroid r adrenal problems?)
5) Is he on any of these drugs ?( i have made anti seizure medication bold so look at that first.)
Acetazolamide, amiloride, amphotericin, aripiprazole, atovaquone, thiazide diuretics, amiodarone, basiliximab, angiotensin II receptor blockers, angiotensin-converting enzyme inhibitors, bromocriptine, carbamazepine(tegretol), carboplatin, carvedilol, celecoxib, cyclophosphamide, clofibrate, desmopressin, donepezil, duloxetine, eplerenone, gabapentin, haloperidol, heparin, hydroxyurea, indapamide, indomethacin, ketorolac, levetiracetam(keppra), loop diuretics, lorcainide, mirtazapine, mitoxantrone, nimodipine, oxcarbazepine, opiates, oxytocin, pimozide, propafenone, proton pump inhibitors, quetiapine, sirolimus, ticlopidine, tolterodine, vincristine, selective serotonin reuptake inhibitors, sulfonylureas, trazodone, tolbutamide, venlafaxine, zalcitabine, and zonisamide.
6) Did he hurt his head at any time recently?
If none of the above are true it could just be a freak accident , but i doubt it.
Let me know. All the best

[Kathie]

Good Morning,
During my above rant, I forgot to mention that Alex was put on Dilantin 300mg/day, at the hospital after he had the two tonic clonic seizures within an hours time, he takes the Dilantin along with Trileptal 750mg/day. We are wondering if the Trileptal is the cause of his lowered sodium levels. On tuesday when this strange seizure happened his tongue was causing him alot of pain, it was so swollen and torn to pieces from seizing, the pain was going up to his ears and everytime he tried to drink or swallow anything the pain was too intense. We where giving him Gatoraide and Club Soda, but that day he said they where stinging his tongue too much so he was drinking alot of water. He could hardly even suck through a straw it hurt so much. This is what we thought was causing his bad headache the healing in his tongue.
Our town water here is very bad, so we have a reverse osmosis system on our drinking water, which ends up taking everythin out of our water.
At the hospital I told the emerg dr. that his ears where hurting and I don't think she even looked in them, just in case he had any kind of infection.
He has not hurt his head at any time. When he was a child he had bumps like other kids have playing around but nothing severe. His cat scans and mri's he's had so far do not indicate any injuries in his brain and nothing to indicate why he is having seizures.
Alex is very aware of the low sodium thing from the drug Trileptal so he is drinking alot of gatoraide and club soda. The only thing someone mentioned is if he drinks alot he will be urinating alot and that would take away the salts??
Thank you for all your suggestions, I really appreciate the time you have taken!!
Have a Good Day!!
Kathie

[drarvindr]

Dear kathie ,
An overlook in my previous post , i forgot to highlight oxycarbazepine (tripleptal). Yes it can cause clinically significant hyponatremia and 1% of patients stop taking this drug because of this side effect.No, urinating frequently does not cause loss of salts in your body unless your body feels it's ok to lose them. The kidneys are there to filter blood and prevent useful substances from being passed out of the body. If we actually peed out everything filtered by the kidney without retaking back the water and salts you would pee close to 35 gallons a day (60 times the volume of your plasma)!. The only time you will pee out salt unnecessarily is if you have some endocrine problems.
I really don't have another explanation other than the tegretol , but if he's drinking gatorade and club soda it shouldn't have been a problem. I think you should talk to your neurologist.I really can't give you a useful opinion without tests and seeing your son. I hope i've been of help.

[josieb]

Hi again Kathie - When I was hospitalized after the grand mal caused by the loss of sodium from my body (due to the Trileptal), as the doctors were putting sodium back into my body via an IV, I was also put on a drinking restriction. Although I was super thirsty and just wanted to keep drinking ice water because my tongue was all swollen and bitten up, I was only permitted to drink a little. The kidney doctor and my neurologist identified that I was flushing the sodium right back out of my body. I was put on the restriction for two days and then after the levels were back to normal and I was started on new meds, I was permitted to drink as much as I wanted again. I wish you and your son good luck at your appointment today. Please let us know how it goes. Sincerely, Josie

[RobinN]

Kathie - all of my daughters unusual behaviors and all side effects were brought on by meds.
Tegretol causes terrible vision loss. Gabapentin caused suicidal thoughts. Lamictal caused EXTREME body/bone/muscle aching. Trileptal caused sore throat and fever.

At this point I decided that it was time to take control and begin healing from the inside out. Nutritional changes have been a huge part of Rebecca's recovery. She is a teenager so I don't have a tight rein on this, but she is becoming more responsible and is making better choices.

I like Emergen C as an alternative to Gatorade. It has no sugar added. Comes in little packets that can be carried with you at all times.

[loveslight57]

Hi
Is your son taking the new dilantin from Pfizer?

[Kathie]

I believe it is the new one, it is white with the pink stripe in the middle.
Kathie

[loveslight57]

Hi Kathie,
I think that is the 30 mg dilantin kapseal. They changed the 100mg kapseal to a new formulation and there have been problems with that ranging from toxic levels,burning sensations in the arms, neck face, chest and increased seizures. Also mouth ulcers. I had a toxic level on the new meds and ended up in the er with a level about 5-6 points higher than on the old meds. It may be best to have a blood level checked anyway. It would help to rule something out or find a cause that you weren't expecting. I was especially concerned because you said it was a different kind of seizure and that could be a toxic response to the medicine. Hope all is well soon.

[loveslight57]

Hi Kathy, i forgot to tell you
If he is on 300 mg a day it must be the 100mg capsule. The new one is half orange and half white

[Kathie]

Hi,
That is very interesting about the Dilantin, I never even thought about it being a problem, I kept thinking it's the Trileptal.
The Dilantin that he has is only 30mg capsules, our little pharmacy in town, this is all they had in stock, so he has to take 5 capsules twice a day, that's why they are the white with the pink stripe in the centre.
They actually did a blood level in the ER that night and said his Dilantin was on the low side, probably because he had just started taking them on the Friday night and this last seizure happened on the following Tuesday evening.
This is all so scary!!
He is starting to feel a little better, he was pretty exhausted yesterday morning when he woke up, but he did not sleep well the night before. His family dr. prescribed some ativan to help him sleep and he took half a pill last night and he slept better.
We finally have a neurologist. appt. scheduled for Dec. 5th. I will call his family dr. tomorrow, (she has very limited hours) and see if we can get another blood test done to see what his levels are like.
Thank you so much for this information, I really appreciate all the help from everyone and I cannot believe how kind people are!!
Kathie