Tegretol?

[Casie]

Does anyone know anything about tegretol. I know what the doc told me and what I have been able to look up.
I was hoping to get some possible personal experiences with it though. Anything that you know would be a great appreciation!

 

[Molly97]

I was on Tegretol for a number of years, both by itself and in conjunction with another drug that I don't remember the name of. I was on a number of cocktails at the beginning of being diagnosed.
The Tegretol. I was first on it for Bi-polar. It was for the extreme cycling they thought I was going through. Today, I think they were totally off-base with the Bi-polar diagnosis altogether.
What concerns me today about all those years on Tegretol is that I have the beginnings of osteoporosis. And now I find out that that is one of the side effects of taking it long term. I am not a happy camper about that revelation.
For seizures, it didn't help; it didn't hurt. It was an unnecessary drug in my life.

 

[brain]

And you had to ask ...

Simply put ... Tegretol is one
AED that's on my allergy list!



My body, well my head, just cannot
tolerate Tegretol, and Trileptal, it's
sister - made things even worse for
me (due to the allergic reaction) ...

You might as well put a dynamite into
my head and light it ... it would be about
the same effect!


But as I've posted numerous of times
and will post it again which is found in
EPILEPSY 101

ALL AEDS OUT THERE COMES WITH SIDE EFFECTS!

• Some individuals may not experience any side effects
• Some individuals may experience a minimal side effects at first but will go away after a period of time (which they call it a 'honeymoon phase') during the titration of the medication.
• Some individuals may experience a mild side effects that are tolerable but can stay with the medication(s). (It's either take the medication(s) or risk the seizure(s) which in turn 'may' endanger you and put you at a risk for brain damage)
• Some individuals may not experience any side effects at all for a period of time, then develop a tolerance (or resistance) - then side effects begins to manifest; and if ever this becomes the case, then one must consult with their Epileptologist or Neurologist; for it may be that the dosage may need to be decreased or it may be that seizures are 'changing' and you need to be re-evaluated again. It may also mean it might be a time to change your AED or AEDS or adjust them accordingly or even having to have a full Neurological Work-Up.
• Some individuals develop side effects not long after beginning the medication and it must be discontinued and monitored by the Epileptologist or Neurologist. DO NOT EVER STOP THE MEDICATION YOURSELF!
• IMPORTANT NOTICE: Some medications needs frequent or sporadic blood level work up. There are some Epileptologists and Neurologists that do not follow through on this, so it pays to do your homework on the drugs you are taking and to ask questions about the drug(s) you are on.
• EMERGENCY NOTIFICATION: If at any time you experience: shortness of breath, chest pains, numbness that radiates especially to your left side of your body, drooping of your face, sudden unexplained rashes that just came up, or experience anything that is unusual to you, thoughts of suicide - Call your Epileptologist or Neurologist or 911 or Go to the Hospital Immediately. Do not consult with CWE - We are not Medical Doctors here! The Doctors / Hospital will take care of you and evaluate you and take care of you.
• This is NOT an exhaustive list - only a BASIC LIST.

 

[drarvindr]

Haven't used the drug personally , i'm on epilim , but here is some advice:

1) If you are using birth control pills for contraception , stop them and use another method. Tegretol renders them less useful and there is no guarantee.
2)Agranulocytosis is a condition where your white blood cell counts plummet and this can be caused by tegretol. You will need blood work every two or three months.
3)Patients on tegretol i have seen have complained about rashes,blurred vision , palpitations and their liver functions have been diminished. If you get palpitations or feel a thumping in ur chest , GO to the doctr ASAP. tegretol is also capable of causing heart rhythm problems.
The most common effect by far that i have observed is stomach upset. It can be avoided if you take the drug with food every day at the same time.
Watch out for :
Signs of liver failure : bruising or bleeding without trauma. Jaundice , dark urine , pale stools , spider nevi ( radiating rashes just below your collar bone that blanch on pressure and come back when you let go.)
Signs of mood changes : depression , sudden disinterest in daily activities , suicidal ideation.

Given the side effects i urge you to take the follow up labs seriously and get them done regularly. Hope you get better

 

[homemom360]

i have been on tegretol for many yrs and have come across few side effects, thought the few i have experienced are annoying.
easy bruising.- someone can bump into me or my kid can play to hard with me and i am dotted with bruises, and they take longer than the usual bruise to heal.
hair loss.- this one really bothers me, it just continouslly falls out, i have to wear a hair net to cook so that i don't get any in the food and when done with a shower i have to check the drain to make sure it does not clog.
lower leg pain- this one has come on as the length of use becomes longer. it is like high ache or low sprain, the same pain you get when you over extend the muscle.
other than the last the side effects have been more annoying than they have anything else, the drug for me does an okay (98%) job controlling the t/c i have though it does little for the s/p i have, and i have noticed that the longer that i take it my body is seeming to build up a tolerance for it and it is slowly becoming less effective. i have looked at other drugs though and this one seems to be one with the smallest list of possible side effects. the side effects you experience maybe different because everyone tolerates medication differently, so this is just my point of view. hope that i could be some help.

 

[Belinda5000]

Tegretol,
I've been on it since it came out in about 1975.
I can't take anything other than the original Tegretol without my seizures going through the roof. I slso can't come off been on it so long.
I've never had any bad side effects
from it. It has be Tegretol with me not the generic.

Belinda

 

[RobinN]

It caused severe vision issues for my daughter.
For more personal experiences you can look here:
www.askapatient.com

 

[Casie]

I am taking the generic. There was another one the doctor wanted me to take but I can't remember the name of it. She said it was a little over $100 a month. I'm hoping to get on it soon after I get approved for some insurance. (I'm trying to go through medicaid, though I don't know that they will approve of that particular medication.)
I have been taking it for 2 days now. I was worried bc I read about all the side affects and wasn't sure about some of them.
One of my concerns is I'm only about 110lbs. So I was worried that I would get some stomach upset. So far, So good.
When I go back to the doc for my first check up I'm suppose to go in for some blood work. We'll see how that goes.
As for the birth control issue. I just had Paragard (for lack of a better word) inserted. So that is an IUD that has no hormones and lasts about 10 yrs. I haven't been able to find anything specific about tegretol and Paragard.
Thank you everyone!

 

[homemom360]

as far as the stomache upset try taking with food or milk that way it is not on a empty stomache, and as for the birth control from what i have read as long as it is something stronger than "the pill" you should be okay. i myself use inplanon it goes in the arm and last for three years at a time, but i've also been on the shot you get every three months and it worked good too.