Please help on this

Hi there,

Your brothers situation sounds very similar to mine. I was dx about age 15 and I am now 22. My sz are also grand-mal but I take carbamazipine and have great control. With regards to the Dilantin, there is obviously something amiss. Either your brother is allowing you to see him take the meds and then regurgitating them (Highly unlikely I would have though, given the effort) or the Dilantin is being used too quickly / not being absorbed. (Much more likely) If it is being used too quickly, then an increase in dosage may be the answer. If it is not being absorbed, then you can either getting an add on med (Such as Tegretol/Carbamaipine) or consider changing the med altogether.

As for the shoulder issue, I know grand-mal seizures have been know to put joints out. If the joint is weak (through repeated dislocation) it makes it easier to dislocate again. So its a bit of a circle and this is probably why the doctor has recommended reconstructive surgery. But if your brother has to be sz free for 6 months, then the issue with the Dilantin needs to be sorted first.

I hope this helps

Darren

Hiya,

When you say "whenever he is sick, he has a seizure" do you mean whenever he is ill or whenever he vomits? If it is when he vomits, there is a possibility there is an element of anxiety. This is just me thinking out loud here but if he were to have an anxiety reaction to vomiting (which is more common than people think) this would send his stress levels soaring and stress is a huge predictor of seizures. Perhaps this is something that can be discussed with the doctor?

I hope you get things sorted soon, Keep us posted

Darren

Let us know how you get on,

Darren

happybunny07,

If I understand correctly, your brother always has Gran-Mal seizures when he is sick?

During this time (when he is sick) does he take any "over the counter" drugs for the cold or flu?

If he is on dilantin He should avoid taking anything containing antihistimine or decongestant.

They (antihistimine or decongestant) are known to have a very negative chemical reaction when in contact with dilantin or other AEDs and are known to trigger seizures and/or internal bleeding through the stomach.

Most ppl don't know that b/c it's not mentioned on the pill containers or accompanying liturature but just ask any pharmasist or Doctor and they will confirm this.

I don't know why the FDA hasn't made this information manditory.

Dilantin strips away some of the protective coating on the stomache lining to let the dilantin obsorbe into the blood stream easier.

The only cold remedy (if you call it that) or headache remedy is TYLONOL.

I found this out the hard way.

I had a bad headache one day so I took some Advil. After a few hours I got an uncontrollable nose bleed and lost so much blood that I felt dizzy and had to lay down, this happened twice the same day.

A couple of days later I had an appointment with my neurologist and I casually mentioned the nose bleed incident.  I told him that I had a headache that day, he asked me what I took for the headache, I said ADVIL. He was shocked that I didn't go into a seizure or bleed out through my stomache.

He said from that point on I was only to use TYLONOL or anything that didn't go directly into the blood stream.

Randy (Ontario, Canada)

Hey Randy,

Thanks for sharing that useful piece of information with us. Like you, I dont understand why this information isnt printed on the literature insuide medicines. Its seems so relevant seeing as most people take antihistamines & decongestants at least 4 times a year! I am not on Dilantin but I will keep my eye open for other people who do.

Thanks again

Darren