I just don't know what to do. I'm a mess. Really don't want to take medication.

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Backstory is I had my first seizure when I was 15, grand mal. Had a couple of SP and GM's between then and 18. Never really had any diagnosis or medication or whatever, then they just stopped. For 6 years I was med free and seizure free and lived a normal life. Had a grand mal out of the blue in sept 2015 after a heavy night drinking. Went in for tests and such and they had found evidence of a previous bleed on my brain, likely due to a condition I was born with that I was always told I had "grown out of". No idea why they never picked up on this bleed previously. Anyway, I saw the epileptologist in december and he prescribed Lamotrigine, I didn't take it though, I was too scared. Since then my anxiety has gotten worse and worse, to the point of becoming agoraphobic and I've been signed off work for the past 9 months because of it. Since the GM in 2015 I've been having sporadic SP seizures, closest together was 9 days apart, longest apart a few months. No more GMs. My epileptologist still wants me on the Lamotrigine. Being the hypochondriac I am, I've looked up people's stories and the effect this medication and other AEDs have had on them and I just think - is it worth it? It feels like the possible cons outweigh the benefit. I have this irrational fear of being out of control of my own mind/thoughts, and the thought of losing my cognitive ability, memory or worse terrifies me. The thought of the long term effects terrifies me, because I think well, maybe all I'll have is SP seizures that'll last a few mins and be done with it. I could be setting myself up for a life of having to deal with feeling lousy every single day, for the sake of stopping some small seizures every couple of months. I know there is a flipside and the seizures could worsen, but I keep thinking should I just deal with that when it comes to it? I don't drive, never have, don't have kids and never will, nobody is dependant on me apart from my dog, so the "safety to others" issue doesn't apply. Does anyone here not take meds? Anyone in a similar situation where their epilepsy isn't so severe? I feel like my increasing anxiety surrounding the seizures is adding to their frequency, and I'm trying to put all of my focus into working on my mental health. Just need some advice/stories/words of encouragement etc. Cheers Steve

Comments

Steve,The problem with not

Submitted by Steggall on Sat, 2017-09-23 - 11:41

Steve,The problem with not taking medication at all is that it can "encourage" your epilepsy to worsen.When the brain starts having epileptic discharges the brain pathways that they travel can become worn down by them. A discharge that manifests itself as a simple partial, can eventually start to be a complex partial seizure where consciousness is lost. If your doctor wants you to take meds, then you should. If the ones you are taking don't agree with you, then tell your doctor to try different ones. But, don't just live on the fact that you might only have SPs.

I've looked up people's

Submitted by just_joe on Sat, 2017-09-23 - 11:42

I've looked up people's stories and the effect this medication and other AEDs have had on them and I just think - is it worth it? It feels like the possible cons outweigh the benefit. I have this irrational fear of being out of control of my own mind/thoughts, and the thought of losing my cognitive ability, memory or worse terrifies me. The thought of the long term effects terrifies me, because I think well, maybe all I'll have is SP seizures that'll last a few mins and be done with it. Your flipside is correct. Each person has their own threshold or ailments. Seizures land in that threshold. As you posted they could worden. You might not look at a side that you might not know. The longer you wait the more often the seizures will come. The stronger they get too. Meaning they may not be simple partial seizure the next time. If you have had a grad mal you have seizures that generalized. They can generalize again. You see I have been there done that. Those side effects you read about do come while your bosdy gets used to the medication. They are generally gone after about a month. But then you may never get a side effect. I had a reaction to the first medication I took. It was a side effect. That reaction was not because it was a side effect. It was because the dosage was set too high. After taking it for 35 years I had the same thing happening. That was because I had gotten toxic on it. Med change was made and I am doing well. As for the other things that you are afraid of. My memory is there. I have no problem with mi thought process. At times I get ahead off myself but that is normal. I have worked in many different fields of work and was a part owner of a small business. I was an executive appeals worker. The people most people calling the executive appeals office for AT&T (old) do not know how to fix things. They do know where to send each part to. I was one of those people that knew how to fix the error and gt their phone number working withing minutes. So relax and do what your neurologist wants. I have taken the medication he wants you on and yes it did stop many of my seizures.

 I've looked up people's stories and the effect this medication and other AEDs have had on them and I just think - is it worth it? It feels like the possible cons outweigh the benefit. I have this irrational fear of being out of control of my own mind/thoughts, and the thought of losing my cognitive ability, memory or worse terrifies me. The thought of the long term effects terrifies me, because I think well, maybe all I'll have is SP seizures that'll last a few mins and be done with it.    Your flipside is correct. Each person has their own threshold or ailments. Seizures land in that threshold. As you posted they could worden. You might not look at a side that you might not know. The longer you wait the more often the seizures will come. The stronger they get too. Meaning they may not be simple partial seizure the next time. If you have had a grad mal you have seizures that generalized. They can generalize again. You see I have been there done that. Those side effects you read about do come while your bosdy gets used to the medication. They are generally gone after about a month. But then you may never get a side effect. I had a reaction to the first medication I took. It was a side effect. That reaction was not because it was a side effect. It was because the dosage was set too high. After taking it for 35 years I had the same thing happening. That was because I had gotten toxic on it. Med change was made and I am doing well. As for the other things that you are afraid of. My memory is there. I have no problem with mi thought process. At times I get ahead off myself but that is normal. I have worked in many different fields of work and was a part owner of a small business. I was an executive appeals worker. The people most people calling the executive appeals office for AT&T (old) do not know how to fix things. They do know where to send each part to. I was one of those people that knew how to fix the error and gt their phone number working withing minutes. So relax and do what your neurologist wants. I have taken the medication he wants you on and yes it did stop many of my seizures.

I've looked up people's stories and the effect this medication and other AEDs have had on them and I just think - is it worth it? It feels like the possible cons outweigh the benefit. I have this irrational fear of being out of control of my own mind/thoughts, and the thought of losing my cognitive ability, memory or worse terrifies me. The thought of the long term effects terrifies me, because I think well, maybe all I'll have is SP seizures that'll last a few mins and be done with it. Your flipside is correct. Each person has their own threshold or ailments. Seizures land in that threshold. As you posted they could worden. You might not look at a side that you might not know. The longer you wait the more often the seizures will come. The stronger they get too. Meaning they may not be simple partial seizure the next time. If you have had a grad mal you have seizures that generalized. They can generalize again. You see I have been there done that. Those side effects you read about do come while your bosdy gets used to the medication. They are generally gone after about a month. But then you may never get a side effect. I had a reaction to the first medication I took. It was a side effect. That reaction was not because it was a side effect. It was because the dosage was set too high. After taking it for 35 years I had the same thing happening. That was because I had gotten toxic on it. Med change was made and I am doing well. As for the other things that you are afraid of. My memory is there. I have no problem with mi thought process. At times I get ahead off myself but that is normal. I have worked in many different fields of work and was a part owner of a small business. I was an executive appeals worker. The people most people calling the executive appeals office for AT&T (old) do not know how to fix things. They do know where to send each part to. I was one of those people that knew how to fix the error and gt their phone number working withing minutes. So relax and do what your neurologist wants. I have taken the medication he wants you on and yes it did stop many of my seizures.

Hi. I have been experiencing

Submitted by LaBreeska on Sat, 2017-09-23 - 22:23

Hi. I have been experiencing symptoms for nine years. I had no idea what was going on with my body. They are becoming increasingly more intense and frequent. I had 2 particular incidences where my husband had an ambulance come take me to the hospital. Mri, cat scan, blood work, eeg, were all done and nothing came back with a flag. I was sent home and continued experiencing symptoms. I prayed for wisdom and understanding because I felt as though each attack felt like the hand of death on me. I began taking a fantastic vitamin supplement and other supplements to help balance the hormones. This helped to greatly diminish the symptoms. I have recently added the best CPTG essential oils topically, internally, and aromatically to my daily routine. I can tell when my body is getting off balance, my heart feels like it's racing, and that is when I incorporate more of the essential oils to help support the brain, nerves, and circulatory system, as well as thyroid. I am so greatful for what I have found! It truly is a Godsend. All these years I've never known I could have this condition. I hope and pray you can find something so gentle, pure, powerful, safe and effective as I did!