seizure dilemma

[aman]

I had 2 seizures in my sleep when i was 16 years old. At least we were told they were seizures no DR witnessed them just my parents. I was put on dilantin after the 2nd one they said it was a gran mal seizures this was back in 1998 and i have been fine ever since. I was given an eeg in the hospital the first once showed nothing,the second they said showed activity. The dr then informed my parents that i had a drugs in my system which turned out to be a sleeping pill i was prescribed so then i didnt know if maybe that spiked the eeg to a false read.My levels for dilantin have never been over 4.7.
Dr says its up to me to quit Dilantin any advice? Also when i had these 2 things happen i was taking Barbiturates for sleep. all my mom remembers is she couldnt wake me up and my eyes were in back of my head but when i woke up i was wozy but fine. she walked me around. ambulance came both times
Now im starting to lose my teeth just this year and im only 32. I stopped dilantin once cold turkey for 8 months then i scared myself and went back on it.
All my record from back then were destroyed. This has been very stressful . I seen one neuro who told me he doesnt think i have epilepsy then went to the foundation but they will not EEG me until i stop dilantin
so confused

 

[Belinda5000]

Dilantin causes problems with the gums.My teeth were crooked because of Dilantin.I wore braces for 3 years, I got them when I was nine years old.I took Dilantin for 26 years.I finally got a neuro to take me off of Dilantin.Stress can cause seizures.

 

[aman]

Dilantin causes problems with the gums.My teeth were crooked because of Dilantin.I wore braces for 3 years, I got them when I was nine years old.I took Dilantin for 26 years.I finally got a neuro to take me off of Dilantin.Stress can cause seizures.

Were you fine once you got off? Did you feel better
Like i said on a few occasions i stopped and felt SOOOOO good.
I just have to make up my mind and be strong. I figured Ill be fine with the stress . From 2011 until this year i had extreme panic attacks over the thought of seizures but my anxiety med and hypnosis has fixed that

 

[Tez_20]

Hi aman,

My neruro but me on Phenytoin (Dilantin) in my early 20s and I was having over 18 seizures daily besides other meds I took otherwise, not those or the others could control my seizures and at the time I was under a psychiatric doctor who saw them prescribed to me and took me off them straight away not allowing any withdrawal because of them causing your teeth to decay plus besides that I also found out later they caused me Muscle Atrophy (Muscle wastage).
If it was me as I cannot say what to do for yourself....I know i'd come off them and go for another med as the muscle atrophy I have as declined my health besides strength.

 

[Tez_20]

By these side affects i'd say your anxiety is coming from the drug and causing you more trouble, especially where the anxiety is concerned


What are the possible side effects of phenytoin (Dilantin)?

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. You may be more likely to have an allergic reaction if you are African-American.

Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Call your doctor at once if you have a serious side effect such as:
•fever, swollen glands, body aches, flu symptoms;
•skin rash, easy bruising or bleeding, severe tingling, numbness, pain, muscle weakness;
•upper stomach pain, loss of appetite, dark urine, jaundice (yellowing of the skin or eyes);
•chest pain, irregular heart rhythm, feeling short of breath;
•confusion, nausea and vomiting, swelling, rapid weight gain, urinating less than usual or not at all;
•new or worsening cough with fever, trouble breathing;
•tremor (uncontrolled shaking), restless muscle movements in your eyes, tongue, jaw, or neck;
•patchy skin color, red spots, or a butterfly shaped skin rash over your cheeks and nose (worsens in sunlight); or
•severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

Less serious side effects may include:
•slurred speech, loss of balance or coordination;
•swollen or tender gums; or
•headache, dizziness, nervousness, or sleep problems (insomnia).

 

[aman]

could that 1998 eeg in hospital have been a false positive? they then watched me all night and nothing happened

 

[Tez_20]

could that 1998 eeg in hospital have been a false positive? they then watched me all night and nothing happened

Well i'd say from 98 your need a new EEG doing and I had one in 97 where I had to keep awake all night, they wired me up and I soon fell to sleep they did the reading in an hour and the brain surgeon I was under said my head was going like mad.
In my opinion ask for a new one to be done and also your body could be well addicted to the med, i'm on some now where my life would be hell trying to come off them.

 

[aman]

Well i'd say from 98 your need a new EEG doing and I had one in 97 where I had to keep awake all night, they wired me up and I soon fell to sleep they did the reading in an hour and the brain surgeon I was under said my head was going like mad.
In my opinion ask for a new one to be done and also your body could be well addicted to the med, i'm on some now where my life would be hell trying to come off them.

I can remember they took me from ER to a room hooked my head up and had me dose off .
First time showed nothing. The one a day later showed something and they put me of dilantin and have never done one since.
But sadly cant afford one

 

[Tez_20]

I can remember they took me from ER to a room hooked my head up and had me dose off .
First time showed nothing. The one a day later showed something and they put me of dilantin and have never done one since.
But sadly cant afford one

I don't know the area you live but it's definitely worth checking on google as I do know some areas in the states will treat patients without insurance cover and I know this through having Lupus.

You definitely need an updated test doing...they did one in 97 for me while awake and nothing showed and I've recently had one this year while sleeping and went straight into a partial seizures....my neuro as said it's pointless doing anymore knowing what I have and can't be cured but they do regular MRI's each year for checking on skull fractures.