What Is The Safest Seizure Med ?

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BB,

 

I had my third and fourth seizures yesterday.  They were the worst seizures I've ever had in my life.  For the first time, I fell to the ground because of a seizure.  I've been off Dilantin (a drug which I HATE with a passion) for 9 weeks now.  I used to get seizures ALL THE TIME EVERY DAY before I started taking Dilantin years ago back in 1993 or so.  Maybe it was 1992.  I am very grateful to be off Dilantin, and had my hopes up because I was not getting hardly any seizures at all.  Now all that has changed.  Within a 20 minute time frame, I had the two worst seizures I've ever had in my life yesterday.  I was really hoping I would not have to take a seizure medication, but those hopes are quickly fading.

 

For those of you who have taken seizure meds, please share which one you took and what your experience was on it.  I HATE THEM and do not want to take one, but I may find myself in the ER soon without a choice or at the neurologist.  I don't want to take one, but I am trying to find out which one has the least amount of side effects and does the least amount of damage to the brain and body.  Please share.  Thank you.  I have two Dr. appointments set up already.  One for tomorrow and one for April 4th.  I may end up just going to the ER if I can't wait for the April 4th appointment.  Chances are, I will have no choice but to get started on another seizure med.  Has anyone done the research or had any experiences on seizure meds? 

 

I can tell you right now that TOPAMAX is out.  That is a black box drug that is just as dangerous and harmful as klonopin and dilantin.

 

Kian

 

[[Fl...]]

Kian, I am so sorry to hear this.  I am on Klonopin which I think was supposed to be a seizure med originally until the Dr's started prescribing it for everything.  I am concerned about this also but will continue my taper.  I do not have epilepsy but had some strange episodes as a young child that later was told were a type of seizure so I am concerned this med made things worse possibly.  Keeping you in prayer,

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[[ja...]]

Hi Kian, I totaly understand. I can tell you about my brothers and hope it will help you. My oldest brother was on dilanton (spelling not right sorry) for many years due to seizures. I remember it well, i was just a kid but i remember back in those days my dad would put his wallet in his mouth so he wouldnt bite his tounge. anyway i cant remember how many years it has been but one day my brother decided to stop taking it. I dont know how he stopped i guess i could find out. but he never took it again. And im pretty sure he is alright . Im sure he hated it too. Then my younger brother when he was just a toddler had seizures scared my poor mom and all of us. They put him on phenabarbital. And eventually my mom took him off too. I have a friend who her son has been on every antiseizure drug you can imagine he has been through alot. They still cant find one that works long term for him. Do you think its possible that just like protracted w/d the seizures could let up. I guess i would hate for you to take something else after all this if that is a possibility. At the same time im not trying to tell you what to do. Only you know. I sincerally feel for you Kian I am praying for God to give you the right ansew i know how serious this is. God be with you. Love Jackie

[[Bi...]]

Kian,

 

This is a question that is hard to answer. I had a few seizures as a kid. I don't really remember much of them, other than headaches. I'm not sure if anyone can tell you the correct seizure medication you should be on. There is a forum, however that may can help. You can try Coping with Epilepsy. I'm not trying to drive you away from here, Nooo.. I'm just trying to help as far as forum advice.

 

Billy.

 

 

 

 

[[Be...]]

Hi Kian,

 

I am on seizure meds.  Not sure if I can advise you which one is the best though.. That is a tough question..They all have such horrible side effects and each person tolerates them differently.  I am on Tregetol, sodium valporate and valium.  The only time I was on mono therapy was with the SV. I know it's ancient but too be honest once I settled in with it it was not bad.. Just bad memory problems.. Have you tried Keppra?  I'm looking at that.. We all react so differently to each drug that it nearly has to be a suck it and see..

 

Dilantin.. I would never go back on it if you paid me... It made me suicidal almost instantly.

 

 

 

It sounds as if you have had some tonic clonic seizures... If you had stiffening of muscles followed very quickly by a drop then it is a tonic clonic.. I'm sorry to say that in my opinion you do need to go to the hospital quite quickly and get your meds sorted out.  I know you are trying to avoid this, but these seizures are quite rough and you have had more than one.. Please go, you don't want to get into a roll over situation.  ( status epilepticus).. That is dangerous.

 

Please go to the hospital and get treated first, then you can look at seizure meds..

 

Good luck and please let us know how you get on.

 

Betsy xxxx

 

 

 

 

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Just had another seizure while laying down in bed.  I'm gong to the Dr. tomorrow.  Please pray I stay ok til then.  There is a two day wait for the ER.  Thank you for your prayers and support.  All I read is nightmare stories about ALL seizure meds!  Don't think there is such a thing as a "good one".

 

Don't want to go to the ER.  Wait is too long just so they can give you liquid benzos.

 

Kian

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Kian, I sent you a pm before I saw this post.  Two day wait!  Oh my........do you have someone who can stay with you to make sure you are ok tonight?  God bless you Kian, will be praying........

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[[it...]]

Kian,

 

We have corresponded before.  When I had to make this choice, I chose Keppra XR.  Look it up on PDR.net and compare it to other anti-seizure meds.  That's what I did.  Of course, you never know how you will react to a drug.  Gabapentin doesn't look that bad on PDR.net, but so many BBs have had bad experiences with it.  Good luck and keep us informed.

[[BY...]]

Hi Kian,

 

I can't imagine how frustrated you are when it comes to seizures, but my Nephew suffers from the also and have seen just how upset he is when it comes to trying to control them. He has had to deal with then since having a head injury during football.

 

He has said several times, finding what works best for you, can be an exercise in futility. He is currently on Topo and previous to that, tried so many others. Not what you wanted to hear. Sorry.

 

From my limited reading it sounds like, everyone is different and has to find out what works best for them. Especially when it comes to side effects.

 

Here is a list of the newer generation and in the newest one approved in the second link. Maybe you can talk to you Doctor

about these.

http://www.childbrain.com/seizure4.shtml

http://www.medscape.com/viewarticle/755404

 

The new anti-epileptic medications

 

Since the early 1990's, 9 new anti-epileptic medications were introduced to the market. These are, for the most part, medications designed to work on a specific seizure control mechanism and, therefore, at times more safe and effective than the old anti-convulsants.

 

Felbamate (Felbatol): A very effective anti-convulsant, even for severe and resistant seizures, such as Lenox-Gastaut syndrome, generalized absence, myoclonic and focal seizures.

Now its use is limited to extremely rare instances due to severe fatal blood and liver damage associated with this medication.

 

Oxcarbazepine (Trileptal): Trilepital is an excellent and very safe anti-convulsant. It is very similar to caramazepine (Tegretol) in structure, but designed to have the epoxide moiety. The epoxide is the part of carbamazepine responsible for the drowsiness, the severe allergic reactions and the very concerning liver damage and blood dyscrasia that may cause fatal side effects. The seizure control abstained with Trilepital is as good and in some situations better than with Tegretol. Side effects are minor, may cause some temporary drowsiness, mild allergic reaction, and decreased sodium level in the elderly. In short, Trilepital is an improved Tegretol, more effective, better tolerated and that has never been the cause of any fatal side effects.

Topiramate (Topamax): Another excellent anti-epileptic medication with multiple mechanisms of action. Good for focal and generalized seizures, was found helpful with Lenox-Gastaut syndrome, infantile spasm, and other seizure types. Generally it is very well tolerated. It may cause a decrease in the appetite and psychosis. At times it may also be associated with a temporary sedative effect. For some children it may be the only medication to be able to completely control frequent intractable seizures.

Gabapentin (Neurontin): This is another anti-convulsant medication with a design in mind. Gabapentin was an attempt to mimic the GABA molecule. GABA is an inhibitory neurotransmitter; theoretically increasing GABA concentration would decrease the brain excitation and stop seizures. Taking GABA itself (available in health food stores) would be useless, since GABA doesn't cross the blood-brain barrier; Neurontin was designed to have a GABA structure yet be able to penetrate into the brain. It is a very safe anti-convulsant, but its efficacy is questionable. To achieve good seizure control, one has to treat patients with very high doses of Neurontin. The side effects include mostly some dizziness and drowsiness.

Other uses were found for Neurontin, including the treatment of migraines (as a preventative agent), neuropathies, and trigeminal neuralgia. The actual mechanism of action of this medication is unknown, but it clearly isn't what it was designed to be.

 

Its main indication is as an adjunct therapy for partial seizures.

 

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Lamotrigine (Lamictal): Good for generalized and partial seizures, may be effective for absence seizures, atomic seizures, and Lenox-Gastaut syndrome.

It is an effective well tolerated medication that may be associated with the development of a severe rash, especially if combined with valproic acid. Recent studies, however, indicate that the rash doesn't occur frequently if the dose is very gradually titrated upwards. Other side effects are mild and consist mostly of some dizziness, drowsiness, or headaches.

 

Vigabatrin (Sabril): Unavailable in the United States due to some irreversible changes in visual fields reported in association with its use. Still a very important anti-epileptic medication due to its beneficial effect in infantile spasms. It was shown to stop these severe seizures in 3 out of 4 children who have touberous sclerosis and infantile spasms. It is associated with much less adverse reaction compared to ACTH (the standard treatment for infantile spasms).

Incidentally, of my patients, the ones who were treated with Sabril for the infantile spasms had the best long-term outcome. All of them currently seizure-free, off any other anti-convulsants, and followed by me for some mild AD/HD and behavioral difficulties or some mild speech delay.

 

Sabril is another one of the GABA designer drugs and the only designer drug that is actually and effectively doing what it was designed to do. Sabril blocks the degradation of GABA, by blocking the effect of the enzyme GABA transamiase, thus increasing GABA concentration in the presynaptic area.

 

Other side effects of Sabril, other than the visual field abnormalities include rare psychosis and some other mild fatigue or gastrointestinal upset, which are related.

 

Tiagabine (Gabitril): This is the third GABA designer medication. It blocks the reuptake of GABA in the synaptic area to be metabolized, therefore increasing GABA concentration, reducing brain excitation. It is mostly used as an adjunct for partial seizures, but may be effective in other seizure types as well. Generally it is well tolerated and was never reported to cause serious side effects. Unfortunately it has a poor effect on infantile spasm treatment and cannot be a substitute to Sabril as previously hoped.

Levetiracetam (Keppra): An effective adjunct medication for partial seizure control, this one has no serious side effects reported. It currently has limited experience in the United States and has not been approved for children yet. For resistant partial seizures however, this medication should be attempted before resorting to invasive managements.

Zonisamide (Zonegran): It come in 100mg capsules and is effective for the treatment of both partial and generalized seizures. It is very effective in absence seizure control and may substitute the use of Depakote in some of the absence seizures resistant to Zarontin or in those who have both absence and generalized convulsive seizures. Generally well tolerated, but in some children is causing extreme drowsiness. Zonegran is usually well tolerated in adults and may cause some rare but serious hematological side effects.

[[Be...]]

Hi Kian,

 

I'm sorry that you are having further seizures... You need to be stabilized... Will no ER department see you if you are in trouble?  Right now you may need a loading dose to get you stabilized.. You don't have to take liquid benzos to be stabilized.

 

I'm thinking of you and hoping for a good out come.

 

Betsy xxxx

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BBMatrix and Betsy and BB's:

 

Rather than re type what I just wrote on my blog, I decided to cut and paste it because I'm fried right now and traumatized from the past two days of having severe seizures.  Here is the copy...

 

Well, here goes.  I was contemplating whether or not to try Remeron to see if that would help me enough to start a klonopin taper again.  Then, a few days ago, just out of the blue, I got HIT HARD with many seizures.  Intense ones, too.  Felt like my brain got disconnected from my body with total loss of control and balance.  It was very disheartening because I tried so hard for so long to get off of Dilantin which works on benzo (gaba a receptors).  All I know is that if I ever make it off benzos and get through this horror show, I will have learned a great deal from all my mistakes.  I do not think it was a mistake to get off the Dilantin.  I'm glad I'm off that garbage.  It made me very very fearful and depressed.  It also made me feel "sick" all the time and drained all my energy.  I also know for a fact that it gave me really bad heart palpitations and I could go on about all the negative effects of it like swollen gums, itching, headaches, etc. the list goes on.....as to say once again.....I'm VERY GLAD I got off Dilantin.  It binds specifically to the gaba a receptor and no doubt other seizure meds effect gaba a receptors in some way, but some of the newer ones don't actually "bind" to the gaba a receptor and use "sodium channels" mainly, instead.  Anyway, my seizures got so intense and much more frequent.  I had at least 30 of them just in the past few days...most of them earlier today.  Some friends from church came and picked me up and took me to the doctor.  I was having seizures all the way there, and also in his office during my visit there.  He thought about giving me Remeron, but declined.  For the first time in my life, I just trusted in his advice and did not have a problem with his decision.  For some reason, it did not bother me.

 

Yesterday, I called an old friend from high school who is now an MD.  I did not want to wait 2 days in the ER and in my condition, I don't think I would have been able to, so I called my old friend who lives in Texas now as a Doctor and asked him for his advice.  Turns out he is a pretty good doctor in my opinion.  My first clue to that is that he does not prescribe benzos.  That, in and of itself, tells me a lot.  He told me that he thought Lamictal would help me.  I could tell he still thought I was "crazy" etc. because I was in such a panic while I was talking to him.  No doubt, he thinks I have the "illnesses" listed in the DSM manual.  I told him that if not for benzos, over 1/2 the "illnesses" reported in the DSM manual would not even be there.  Prior to my conversation with him, my Dad's doctor thought that Lamictal would be a much more safe seizure med than Dilantin with fewer negative side effects.  That's two hits on Lamictal so far.

 

Then, I went to the Doctor today and without mentioning ANY seizure medications, he recommended Lamictal.  That is three Doctors that know my story who all recommended the same seizure med so I decided to go ahead and start the Lamictal.  It is now very obvious to me that I have seizures for life unless God intervenes with a miracle and heals me of them.  I had seizures even before I started the Klonopin back in 1991.  I do believe, however, that benzo tolerance and long term use makes the condition WORSE.  No doubt in my mind as I have never had such intense and scary seizures as the ones that I have experienced the past few days. 

 

I got my script for Lamictal and my friends took me to Costco pharmacy and I kept having more seizures and more intense ones as I barely made it to the pharmacy counter there.  I was having seizures when I gave the script to the pharmacist.  I said, "Normally, I don't ask people to "rush" things, but would you mind putting a "rush" on this script?  Then she saw me have a seizure and said yes.  I had to hang on to the cart to keep from falling down and I could not walk because it felt like my feet were "curling up" cause my muscles were tensing up so tightly.  I took the Lamictal before I even got out of the building.  I'm still getting some "auras" which are feelings that you are going to get a seizure, but the actual seizures have stopped now except for some really mild ones that are not fully manifested.  I'm glad, so far, that I am on Lamictal instead of Dilantin.  I believe Dilantin is the worst seizure med out there.  I think it might be one of the oldest ones, too, and not as safe as most of the newer ones.  All I know is that suffering some side effects of this med (hopefully it won't be too bad like Dilantin) is not 1/2 as bad as the seizures I was having.  When you are haivng a seizure, it is worse than benzo withdrawals.

 

I still have the goal of getting off the klonopin as I believe benzos will eventually kill people over time if taken long enough.  I feel like klonopin is killing me and still wonder if I will survive having taken it so long.  Who knows, maybe the Lamictal will help me to be strong enough to finally get off the klonopin, even if not over night.  I've already spent the past almost 3 years of my life trying to get off of klonopin.  Why stop now?  So much pain in vain.  I hope not all of it.  I hope to be benzo free for life someday.  If I have to take a seizure med for the rest of my life to stay alive longer, then so be it.  We all do what we can with our own unique situations. 

 

I'm learning to be more grateful to God for people who really do care.  I'm grateful for each and every one of you.  If I survive this, I will have a HUGE dept to pay.  A debt that I owe to all those who have made a difference in my life during this long and painful journey, and also a debt to those that I have yet to meet who either are, or will be going through the same thing that I am going through.  That is my desire.  To see those of you on this forum who are suffering in ways that no one has a clue about to endure.  I can think of no greater reward for having gone through this (if I make it) than seeing you make it, too.  That, in and of itself, will make all the pain worth it.

 

Kian

 

 

[[Bi...]]

Kian,

 

What kind of seizures you have? I may be mistaken, but I think last year, you said focal?

 

I was prescribed Lamictal, but never took it. I don't know much about it,

 

Billy.

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Kian,

 

What kind of seizures you have? I may be mistaken, but I think last year, you said focal?

 

I was prescribed Lamictal, but never took it. I don't know much about it,

 

Billy.

 

I was diagnosed with focal seizures back in early 90's.  I would assume that is what they are still.  I think it basically means that the abnormal electrical activity in the brain that causes the seizure is confined to one specific area of the brain and is thus, "focal".  I just got off the phone with my old high school buddy who is an MD who also takes Lamictal for bi polar disorder.  Being that he is a Doctor, I have no doubt that he took special care in researching his own medication before he decided which one to take.  This is another reason I feel Lamictal might be one of the "better ones" if there is such a thing as a "better" medication.  From what he told me, it does not bind to the gaba receptors.  It effects them partially in an "indirect way" but does not bind to them like klonopin and dilantin.  The main neurotransmitter it affects is glutamate.  It acts on the actual neuron, rather than the receptor unlike Dilantin which is one step closer to the actual "synapse" whereas the benzo goes directly to the synapse.  That kind of makes sense to me.  I just got off the phone with him.  He really helped me to understand all this a bit better I think?  lol.  I'm hoping it does not affect my sleep in a bad way.  This is my biggest concern about it as of now.  I just wish they could prove everything they teach, and I mean that respectfully, of course.

 

How have you been doing , Billy?

 

Kian

[[Bi...]]

Kian,

 

What kind of seizures you have? I may be mistaken, but I think last year, you said focal?

 

I was prescribed Lamictal, but never took it. I don't know much about it,

 

Billy.

 

I was diagnosed with focal seizures back in early 90's.  I would assume that is what they are still.  I think it basically means that the abnormal electrical activity in the brain that causes the seizure is confined to one specific area of the brain and is thus, "focal".  I just got off the phone with my old high school buddy who is an MD who also takes Lamictal for bi polar disorder.  Being that he is a Doctor, I have no doubt that he took special care in researching his own medication before he decided which one to take.  This is another reason I feel Lamictal might be one of the "better ones" if there is such a thing as a "better" medication.  From what he told me, it does not bind to the gaba receptors.  It effects them partially in an "indirect way" but does not bind to them like klonopin and dilantin.  The main neurotransmitter it affects is glutamate.  It acts on the actual neuron, rather than the receptor unlike Dilantin which is one step closer to the actual "synapse" whereas the benzo goes directly to the synapse.  That kind of makes sense to me.  I just got off the phone with him.  He really helped me to understand all this a bit better I think?  lol.  I'm hoping it does not affect my sleep in a bad way.  This is my biggest concern about it as of now.  I just wish they could prove everything they teach, and I mean that respectfully, of course.

 

How have you been doing , Billy?

 

Kian

 

I'm hanging in here, Kian.

I wish I could say I'm doing loads better. We just have to take it one day at a time.

 

About the Lamictal, I have heard of it for both Bipolar and Epilepsy. I think they prescribe Lamictal over Lithium nowadays. I never took it. I have seen a few people on here that have taken it. Hopefully someone will weigh in.

 

I would assume that is what they are still.  I think it basically means that the abnormal electrical activity in the brain that causes the seizure is confined to one specific area of the brain and is thus, "focal".

 

That's what I gather, too. I'm not sure. I have heard of Partial, Absent, and so on.. but not focal. I will have to google it.

 

I hope the Lamictal works for you.

[[Be...]]

Hi Kian,

 

Thank you for letting us know how you are.. I used to have focal seizures, and before my surgery tonic clonics.... It is so frightening and fries your brain so horribly. I remember thinking I was going to die, quite literally, from each fit, just awful. You have done massively well to do what research you did in your condition, my hat goes off to you.

 

I was on Lamictal for about 6 years.  I took it along with of 4 other seizure drugs so I will never know what the side effects are.  I hope it suits you..Let us know. Try and rest now you have had a rough time.

 

Hugs,

Betsy xxxx

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Hi Kian,

 

Thank you for letting us know how you are.. I used to have focal seizures, and before my surgery tonic clonics.... It is so frightening and fries your brain so horribly. I remember thinking I was going to die, quite literally, from each fit, just awful. You have done massively well to do what research you did in your condition, my hat goes off to you.

 

I was on Lamictal for about 6 years.  I took it along with of 4 other seizure drugs so I will never know what the side effects are.  I hope it suits you..Let us know. Try and rest now you have had a rough time.

 

Hugs,

Betsy xxxx

 

Thank you, Betsy.  You have been through so much.  I really hope you are doing ok.  So far, no negative effects but I am at a very low dose now.  The dose has to be gradually increased over time to avoid unnecessary reactions to it.  I'm hoping to get by on as low of dose as possible.  So far, I am not having seizures at the low dose of 25mg per day.  I think my doc might want to get me up to 100mg or so, but I might settle for quite a bit less, unless perhaps a higher dose will eventually help me get off Klonopin for good.  That is the goal.  I will just continue to "learn as I go" on this long and unpredictable journey.  Thanks so much for wishing me the best. 

[[it...]]

Sounds like you're in good hands, Kian.  No need to write back.  Just wanted to let you know I'm thinking of you.

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i spoke too soon now i'm feeling like auras to have a seizure again and am horrified not sleeping ok only a few hours woke up with hardcore adrenaline shoots nervous insomnia nausea total panic plas pray for me doc tole me to updose the klonopin but i ton't want to so he said keep taking lamictal but I'm horrified pls pray

[[ja...]]

Dear Kian, I just got home and read your post. You just started the medication so it might take a bit to work. Keep in mind God is in control Trust him with all your heart. Many are praying for you. But i know how afraid you are. Try to breath deep and slow. One breathing techneque i saw was breath in slow counting to 4, hold count 4 exhale count 4, hold count 4, inhale count 4, hold count 4, and repeat like a box or square. I hope this helps. Im praying now for you my friend, God will take care of you.  Love Jackie

[[an...]]

Kian have u tried tegretol? I have been on that 4 years,but I have 2 taper it becouse I have been on this 4 way to long,since 92. Angel