Hi all...

[BrooklinBrat]

Hey there.

I'm a 38 (almost 39)-yo woman, from Whitby Ontario, diagnosed with epilepsy at the age of 7.

Been on Dilantin pretty much ever since (one trial switch to Depokene at the age of 15, when my platelets dropped through the ground...but that never took, so they put me back on the Dilantin and took out my spleen - platelets ok since...)

My seizures have been well-controlled enough that I can drive and stuff. But in the last few years, I don't find the Dilantin 100% effective. Having many more myoclonic jerks (which typically precede a tonic-clonic seizure if I can't get to lying down fairly soon), and the "shaky eyes" as well as difficulty finding words, and memory issues.

Dilantin increased to levels where my doc is worried about liver toxicity, and still not 100% effective. I also seem to be having more difficulty getting to sleep, and wake up in the middle of the night, often having trouble getting BACK to sleep.

It doesn't help that this has probably been THE most stressful year of my life...My doc put me on Ativan for about a month, and 0.5 mg at bedtime really helped me sleep, and took the edge of the anxiety of a potentially sleepless night. But I'm not on it any more (benzodiazapines being potentially addictive, I can't say that's a bad thing), and now I'm having creepy-crawly nightmares a couple of times a week, crying in my sleep when I don't remember the dreams, difficulty getting to sleep/staying asleep/waking at night again...If I hadn't read all the nightmare stories about benzos I'd consider them for long-term help!

I am currently waiting on a neuro. consult to discuss changing or supplementing my current meds. My GP suggested Topamax as a "top-up" but he wants me to talk to the neuro first...Have read that Topamax can make you "dummer than a bag of hammers" and don't look forward to that kind of side effect. I'm wobbly enough in the head just now!

This scares the h*** out of me. I don't want to have seizures and I DON'T want to lose my license - I have three kids 18, 14, and 10, and live in a lovely little town except we have NO public transit..

Susan

P.S. Sorry for such a long "hello" :lol:

 

[Bernard]

Hi Susan, welcome to the forum!

My wife, Stacy, is currently also on 300mg of Dilantin at the moment. She complained about it to her doc, so he also suggested trying reducing the Dilantin and starting Topamax. I'm not sure it is necessary in her case as the Dilantin was working really well for her except when she was too stressed out.

In any event, have a look at the 5-HTP and GABA threads. They might be worth discussing with your neuro.

 

[lindy]

Hi, Susan! I agree with Bernard - read the 5-HTP info. When it comes to sleeping well and getting rid of depression, I've had great success with that. Have a prescription for diazepam to deal with severe panic attacks and, since starting 5-HTP, I no longer need them. Stopped taking AEDs 5+ years ago (hard to believe that it's been that long) because none of the drugs I was put on gave me any seizure control at all. I know the spot you're in - my kids are now grown but It's tough having kids at home when you HAVE to drive due to a lack of public transportation. Vitamins and supplements have given me remarkable control though and life certainly is nice without both the seizures and the drug side effects.

 

[BrooklinBrat]

First, thank you both for the welcome, and I'll definitely check out the threads you've suggested!

Bernard,

You say Stacy complained to her doctor about Dilantin...What specifically was she having trouble with? Did she find is less effective than it used to be?

 

[Bernard]

No, she hates taking drugs. She mostly complained about nausea and feeling tired/worthless after taking the pills.

 

[RanMan]

Susan,
Hi Susan, I'm from Hamilton, Ont.
I don't know if this will help but this is MY experience:

Recently, I had my 6 month neurological check up.
After being examined first by the intern (it's a teaching hospital) and then by the Doctor, we were discussing my poor coordination and gait. (I've had to make a career change due to my side effects)
Well, I was surprised at his reply. He told me that if I were to go off all my meds. I would still have the same balance and coordination problems because the "long term use" of the dilantin and pheonobarb, it has caused permanent neurological damage.(bummer, now I'm scewed for life)
I asked him if this process could be reversed and he said no.

When I was first put on dilantin 25 yrs ago, there was very little known about it's long term effects.It's too late in my life to change meds (and risk lower brain stem damage) or go off them completely to stop it from getting any worse and risk a seizure.

Since the seizures are under control and the meds don't interfere with the other meds that I take for my Colitis, I chose to stick with this rather than risk other problems.

Randy (Ontario)

 

[RanMan]

Susan

Some of the side effects from DILANTIN,I'VE BEEN EXPERIENCING are listed below.

It is documented that it is hard on the liver, causes abnormal hair growth (where you don't want it), and/or overgrowth or softening of the gums.

I also want to say that I've been on this drug for 25 yrs and I have my blood monitored weekly and my liver is in good shape.
I see the dentist every 3 months(because of the dilantin he wants to see me every 3 mos.) and my gums show no sign of dilantin use.

I do however have unwanted hair growth (legs, arms, chest, back,) but bald on the head. (I don't know if thats hereditary or from the drug)My arms and legs are like Robin Williams.

I've noticed other side effects such as stigma (sp) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile dysfunction, to name a few.
I also take pheonobarb and the only effect I get from that is drowsieness and getting tired.

Randy (ontario)