just diagnosed fear of medication

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daisydu

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Hi All
this is my first time on your forum! I was recently diagnosed with TLE and have been prescribed Lamotrigine.
I have suffered from depression/panic attacks for many years and am VERY sensitive to medication. I am so scared to take the tablets and am wondering what would happen if I didn't take them.
Thanks for reading this!
Daisydu:cry:
 
Hi Daisydu, welcome to the forum. :hello:

A good place to start would be these threads: Epilepsy 101 and proactive prescription for epilepsy.

If you don't take the Lamictal/Lamotrigine, you will miss out on any potential seizure control. Worst case, your seizures start getting worse in a process called kindling.
 
:hello: Daisy

Bernard is right - and those two links he's
provided are a very good place to start
reading and by the way --- WELCOME TO
CWE .. You can learn a lot from people from
all types - caretakers and those who have
epilepsy/seizures like me.
 
Hi Daisy - my daughter seems to be very sensitive to the medication as well. We are taking it very very slowly, increasing every two weeks.
Some of the meds and I think Lamictal is one, can actually help with depression.
I guess my feeling is, how are the seizures affecting your life, and can you live with that.
There are many alternative methods that you could try at the same time so you don't feel like the drugs are the only route.
 
Hi Daisy : Welcome to the board !!!!!!! I am going on 52 yrs old and have had epilepsy
since I am 11 yrs old. 2 yrs ago I ran out of meds and I tried homeopathy and stuck with
it. The homeopathy dr said it was too late for me to get me off all my meds . But when I became toxic on mysoline I had to get off it. So I added the Gard diet and tomorrow is 2 months I am totally off meds. I would suggest you choose a method to control your szs.
You must do what suits you !!!!!!!!!!! Wishing you a sz free life !!!!!
Riva
 
Hi Daisy,

Not everyone chooses drug therapy, and there are other options available. These include diets, neurofeedback, and behavior therapy, for starters.You also have the right to get a second or even third opinion, especially since there are so many things that can cause TLE.
Check out Riva's posts on the G.A.R.D. diet. We are both finding better seizure control [no seizures!] on a gluten free diet.
Choosing to use or not use drugs is very a very personal decision, and you are the best judge of what is best for yourself. Get as much information as you can find, and go with what feels right for you and let yourself be free to change your mind if you are not getting the results you want to see. Below are links to information and resources I hope you will find useful.
You may want to make this your first stop:
http://www.andrewsreiter.com
They have decades of experience in helping people learn to manage or overcome their seizures with minimal use of drugs, a more comprehensive approach than you will find in many places.

Epilepsy is very often misdiagnosed. One of the more common misdiagnoses is syncope (heart problems) This link is to an article by a cardiologist who gives some good advice to anyone with seizures that don't respond to drug therapy:

Vasovagal syncope and the inappropriate diagnosis of epilepsy Patients with vasovagal syncope (simple fainting spells) often receive the mistaken ... Many patients are inappropriately labeled as having seizures ...
http://heartdisease.about.com/cs/generallinks/a/syncopeseizure.htm

lamictal can have some serious, even life threatening side effects you may want to know about before deciding whether to take it. This web site is about drugs that have been recalled and dangerous drugs:
http://www.ryar.org/lamictal/

Panic attacks can be the symptom of a partial seizure, they were for me, when I had them. And all of this can be triggered by gluten intolerance. This link is from the Oprah Winfrey web site:
http://www.oprah.com/community/thread/3511
And another article on this: "Happiness with Gluten Elimination
Gluten-Free Diet Decreases Depression, Increases Mental Health
© Kimberly Burnham
Feb 20, 2007
A gluten-free diet is being associated with decreased depression, increased mental health, better balance, improved behavioral issues and neurologic function." Full article link:
http://neurologicalillness.suite101.com/article.cfm/happiness_with_gluten_elimination
Panic, syncope, and seizures can be triggered by magnesium deficiency:
eMedicine - Hypomagnesemia : Article by Nona Novello, MDAccordingly, magnesium deficiency has an effect on multiple body functions. ... Ataxia, vertigo, nystagmus, and seizures (at levels <1 mEq/L) ...
http://www.emedicine.com/emerg/topic274.htm

Many people in this support group are looking at non-drug approaches to treating seizures:
http://health.groups.yahoo.com/group/epilepsycured/
For your panic and depression symptoms, you may want to check out Dr. Peter Breggin's site. He is a very strong patient advocate in his work and his writing:
http://www.breggin.com/
This site is for non-drug approaches to mental health issues:
http://www.alternativementalhealth.c...ut/default.htm

I hope you find the information useful.
 
Bernard said:
If you don't take the Lamictal/Lamotrigine, you will miss out on any potential seizure control. Worst case, your seizures start getting worse in a process called kindling.
Click to expand...


Hi Bernard,
As you and so many of us learn with neurofeedback and other behavioral apporaches, the effects of kindling [learned\conditioned seizures can be unlearned in a process known as desensitising. So Daisy wouldn't miss "any potential seizure control;" only whatever benefits or side effects might come from taking lamictal. There's no for sure right way on how to proceed with seizures. We have to do what is right for us at a given moment and change whenever it seems appropriate, don't you think?
 
I thought it was understood that I was talking in context of what the AED might offer.

Everyone's case is different and AEDs can be a necessary part of attaining seizure control - even if it is for the short term, so I don't like to completely discourage anyone from taking them.

My wife would not be alive today if it weren't for phenytoin. She would have died from status seizures in November 2005 or any of several occasions after that.

She is pursuing neurofeedback, diet, etc. in an effort to retrain her system not to seize anymore and hopefully will be able to titrate off her medications some day in the near future, but she isn't there yet.
 
THANKS EVERYONE FOR THE GOOD WISHES AND GOOD LUCK!!!!!!!

i can't beleive i have come this far????? its a miracle!!!!!!!!

Riva
 
Hi Bernard,
I absolutely don't argue against using AEDs, so let's be clear on this. There is very little information widely available on their many side effects so that people can be sure to be taking them safely. There is even less information readily available on ways in which to minimize known side effects of some of the AEDs, a good topic for some future posts.
 
Happy Birthday Riva!!
 
Bernard said:
I thought it was understood that I was talking in context of what the AED might offer.

Everyone's case is different and AEDs can be a necessary part of attaining seizure control - even if it is for the short term, so I don't like to completely discourage anyone from taking them.

My wife would not be alive today if it weren't for phenytoin. She would have died from status seizures in November 2005 or any of several occasions after that.

She is pursuing neurofeedback, diet, etc. in an effort to retrain her system not to seize anymore and hopefully will be able to titrate off her medications some day in the near future, but she isn't there yet.
Click to expand...

I agree with Bernard,

actuall,y I did and felt better on Lamictal then ive felt on keppra.... my kidneys I think effect effect the drugs i have to take... im not sure though... The reason i stopped lamictal WAS had my mensteral period for a month..... from what my neuro told me its really rare...

alot of people come on the forums and post bad effects but when they start to feel better they dont sometimes post what helped Or made a difference OR that the side effect are gone......

Don't be afraid to take your meds....

Love angel
 
daisydu said:
Hi All
this is my first time on your forum! I was recently diagnosed with TLE and have been prescribed Lamotrigine.
I have suffered from depression/panic attacks for many years and am VERY sensitive to medication. I am so scared to take the tablets and am wondering what would happen if I didn't take them.
Thanks for reading this!
Daisydu:cry:
Click to expand...

SOMETIMES if you read the side effects of a med you can get all psyched up... SO if i were you i wouldnt read about the side effects... just listen to your body they all have side effects that usually go away with in the first month... you may not have any at all... I try not to read the side effects of any med unless I know for sure a fact it has caused a change in my body thats not right....


take your meds then listen to your body....

Love angel
 
angel said:
SOMETIMES if you read the side effects of a med you can get all psyched up... SO if i were you i wouldnt read about the side effects... just listen to your body they all have side effects that usually go away with in the first month... you may not have any at all... I try not to read the side effects of any med unless I know for sure a fact it has caused a change in my body thats not right....


take your meds then listen to your body....

Love angel
Click to expand...

I have to disagree with this. Some side effects are very life threatening and if you are not aware of them or choose to be ignorant about the possibilities, it can cost you your life.

Anaphylactic shock KILLS. It may be rare, you may have used a medication for years with no problems and suddenly develope an allergy to it.

My husband had been using Bacitracin for years. One day at work he crushed his finger and the nail had to be removed. The ER doc put Bacitracin in the nailbed, bandaged his finger and sent him on his way. He got as far as the door and collapsed. I heard him hit the floor, couldn't see anything but I knew it was him. He was in the middle of the ER and almost died. His respitory system collasped and was put on a respirator. We were very lucky his heart didn't stop, but we were told if he had made it to the car, he would have surely died. It was his 50th birthday.

I have experianced drug fever from sulfa drugs used to treat a UTI. Never had any problems before but was hallucinating and my pulse doubled! I didn't know at that time what drug fever was.

Before I take ANY medication, I make myself very aware of any potential side effects. With all the allergies and strange combinations of medications I take, I feel cannot be too cautious.
 
Angel:

BIRDY IS RIGHT! That was ONE OF MY BIGGEST
MISTAKES that I made last year when I didn't
do a research check on a medication that I was
put on; and yet he knew I was allergic to one
(if you're allergic to Tegretol, you are going to be
allergic or have very bad reactions with Trileptal,
which is merely Tegretol with oxygen).

But no one is to blame but myself!

There should be a song "The Devil Went Down To
Trileptal Hell ..." after what I went through ....

That med did not last very long with me at all.
And it got to the point that I am scared of any
AED that starts with a "T"
 
Yeapers!! One good allergic reaction and you'll be reading the fine print on every damn thing. :eek:

I took Lamictical for about a month when I had my VNS turned off. I put 12 hour lipstick on and realized it was all crooked! I thought WTF? When I looked closer at my lips I realized they were swollen, not from the lipstick but from the Lamicital! ( a noted adverse reaction) The swelling didn't get any worse but if it started to spread in my mouth I would have RACED to the ER :!:

Does not want Anaphylaxis!:tdown:
 
I nearly died more than one time on AEDs, nocturnal convulsive syncope during sleep causing me to choke and vomit into my lungs causing aspiration pneumonia. The risks of injury are very real and not to be made light of. If doctors and drug companiese did a better job of monitoring AEDs and educating those who use them about side effects, many people might have better seizure control and fewer complications from AEDs.
 
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