New and scared..looking for advice

[halcyon]

So I'm 24 and haven't had a seizure in 3 years and I want to get off the medication I am on but the idea of seeing a neurologist scares me soooo much. The last neurologist I saw had me over medicated and I was still having seizures..I was not living essentially. The issue is I'm still on klonopin (which was supposed to treat a side effect of one of the 9 drugs she had me on) and I can't get off of it, I'm as low as possible .25 to .5 a day but the withdrawals are so nightmarish(my speech and my body) that I'm scared. Also i'm soooooo sick of running in to people who knew me during the 2 years I was having the grand mal seizures and not remembering them and them getting mad..I've pretty much lost anyone who was close to me in my life because they assume I was flaky or crazy or a drug addict... not a single one understands this..I feel like a locust sometimes- like the old shell is there but a new person lives in it..that sounds so cheesy but I'm not the same and I don't remember..that is the worst and it scares me so much...I've never been open about this to anyone and my family pretends it never happened..I'm just lonely and scared.

*Ok so more to the point I realize my thread is pretty depressing and kind of pointless...So here are my questions: Does anyone have advice on how to approach a new neurologist(3 years after your last seizure) when your old one made your life miserable and she'll be the one faxing your medical files unless you want to pay for another mri, eeg, and hours of hospital video surveillance? (By the way haven't had a seizure since I stopped seeing her so shes a bit bitter.)

Second question: Any advice on how to deal with the loss of memory? How to explain that period of my life or deal with people I can't remember who get angry?

Third Question: Any advice on how or who to seek help on getting off klonopin?

 

[Bernard]

Hi halcyon, welcome to the forum. :hello:

Stopping drugs when seizures have been controlled for years

I'm guessing that you are aware that there are more than just one type (grand mal) of seizure, right? Do you know if you are experiencing any other types of seizures? If so, a neuro will likely not agree to a complete elimination of AEDs.

If you want to see a new neuro, just search one out and make an appointment. Stacy has had several neuros over the years. Just let them know you weren't happy with the last one if that is the reason you are switching.

My wife has had problems with memory ranging from severe (she was a complete vegetable at one point) to trivial. For her, it has mostly seemed related to the proximity of seizure clusters - ie. problems are worst following a cluster of seizures and returns to normal over time as she remains seizure free. Some members here report cognitive clouding as a side effect of some AEDs. I don't recall if Klonopin is one of them though.

You should talk to a neuro about whether dropping the klonopin is a good idea. I would think they would want to ensure that you are not experiecing any current seizure activity first (a current EEG at the minimum to see what's happening in your head).

 

[halcyon]

First of all thank you for responding. You are completely right, I already have an appointment. The exact type of seizure I was diagnosed with was Juvenile myoclonic epilepsy however my mris and cat scans and eegs were such a mess that there was no definitive diagnosis and she had some belief that it was this rare disorder that effects only women but I left her before we could explore it in any more depth. You are totally right I have to have a current eeg before they even remotely consider taking me off my meds. I know klonopin isn't normally prescribed for epilepsy(hence my old neurologist being so against it) but she had me on effexor, topomax, esgic plus, depakote, and then klonopin to make me less anxious. Pretty much my life was sleeping and going to doctors appointments. So I figured if this is my life it's not worth living- pills and appointments are not a life..not suicidal but just you know...anyway I got myself off everything and my internist prescribed the one thing I couldn't "physically" kick which is the klonopin. So now I want off of it but I'm scared...also the memory thing..what do you tell your wife? I get so sad sometimes because I can't remember huge portions of my life.

 

[halcyon]

oh yeah sorry I forgot to respond to this portion of your thread. I am completely certain that the klonopin is effecting my memory. The siezures definitely did as well because anything around the time I was having them all seems like a big dream and I mean a year and a half long dream....I can't distinguish between what happened and what didn't and most of the time I can't remember at all. I live alone in a studio. The reason I'm posting at all is I'm scared the neurologist will try to medicate me(heavily) again..I still have the jerks and the absence seizures but I'd rather have them than the side effects..really I know it sounds crazy but the side effects of those drugs are insane at one point I had an epi pen prescribed so that when (because it would) my throat started to close up I could stab myself in the leg....!!!!!!! That is crazy and this woman is a famous neurologist and she kept upping the lamictal....I just I never want that life again.

 

[RobinN]

Hi Halcyon - Welcome
My daughter sees Dr Laura Kalayjian at USC Neurology. She has been great. Tried some meds and was willing to pull them when the side effects were not acceptable. She is now asking us to do a trial of magnesium. So it appears that she is open to alternatives. Also she was willing to prescribe a natural progesterone, when I could prove that many seizures were related to her cycle.

Rebecca also has difficulty with memory. Can't remember much prior to the event, and also had an episode at the end of '06 where she had amnesia, however that only lasted for two months. When she regained her memory the two months have been lost. The neuro at the time believed all the seizures to be psychogenic. Another believed the episode to be seizure activity. Who is to know?

We are seeing a GI doctor this month, as I have instincts that lead me in a different direction. Also an appt with neurofeedback to discuss another alternative.

So you see, there alternatives and hopefully you will find someone to work with, that will see you as a unique individual. I wish you luck in getting off of the drug... that sounds like a bad fit.

 

[Bernard]

...also the memory thing..what do you tell your wife?

I tell her that I love her.

I firmly believe that everything you ever experience is stored in the memory banks. It's the recall program that gets a bit scrambled at times. If the Klonopin is culpable in your case, your memory recall will likely return after you are fully weaned from it.

..I still have the jerks and the absence seizures but I'd rather have them than the side effects..

Well, if you are having seizure activity then I'm quite sure no neuro will recommend dropping all AEDs.

I would recommend you investigate EEG neurofeedback (see link in signature) as a safe, non-drug alternative that might help both with seizure control and improving cognitive function/memory recall. My wife completely eliminated her absence seizures with it.

 

[Birdbomb]

Hey halcyon

You know, maybe if you print up this thread and allow the new neruo to read it, there will be a better understanding of your situation.

Sometimes we do have to shop around for the right doctor.

Kolonpin is very difficult to discontinue. I was able to wean myself off in 4-5 months, but I have a friend who's been trying for 3 years! This drug is a morphine base (I think) and highly additive so you may not be able to come off by yourself. It must be done very slowly with very gradual decreases.

Living a life of doctor appointments and over-medicated is something I can relate too. These AED's are the pits for side effects. And if you are on several your feel like a damn Zombie!

Most people are forgiving. When dealing with those from the past, you really don't owe an explaination, but if you feel you must, then just say you were ill but are much better now, thanks for asking, then change the subject. If they keep pushing, ask them why they want to know something so personal. That usually ends the Q&A on the spot.

 

[Stacy]

Hello Halcyon,

I am Bernard's wife and he's dealt with quite a bit over the past few years. my seizures got so much bigger after I had my kids and were related to my cycle. As for my memory, I promise, it's all there, you just have to find it. It's actually amazing what you find, when you take the time to look. A couple of cases in point....

1. lost memory for names: People I'm supposed to know (I've met many times and had many conversations with) will come up in a crowded setting, "Stace! Hi! How's it going?!" I recognize the face, and know I know them, but...from where? What's the name??? I will put a huge smile on my face and scream, "HIIIIIII!" as if I hadn't seen them in years and was overjoyed (which I was, but I just couldn't think of the name). I'll then carry on a conversation and make my exit. This particular time, I made my exit with my little boy in my arms. He said, "Mommy, who's that?" "I don't remember." I told him. "We need to go find out." he said, as he pulled me back to the car in the parking lot at the baseball field. So I asked. "I can't remember your name." She just looked at me as if I were the most ludacris person on the planet and said (in her best valley girl voice), "tsk. ELENOR!" While I was at it, I was going for 1000. "I knew it! Now, where do I know you?! More confused look.... "I'm xxxxx's (my best friend) sister!" I felt really dumb. I've met that lady a million times and couldn't remember who she was.

2. I had studied for my test in Graduate level Environmental Radiation really hard. I was prepared. Everyone knew it, as I had studied with a group. Test day came, and the test was put in front of me. Total black out. By the end of the test, the professor looked at his watch and said, "Stacy, you've only got 10 minutes left. You'd better hurry." I looked back down and tried so hard, but nothing came. I broke down crying, and I've known this professor since I was an undergrad (which is why I took him again). Hysteria even. I was SO embarassed.

3. I can remember the words to almost every song I've heard and sing along. Hoever, if Bern asks, "Who sang that?" I couldn't tell him to save my life. Not even a guess.

Then one day, after a set of seizures, I was able to name names. I was able to name singers (at least some of them). I was able to remember just random stuff that wouldn't come before. All I had been doing, is exercising, neurofeedback, keeping a good diet, yoga, keeping my electrolytes up, and taking my vitamins/and Dilantin (which I hate). That doesn't sound so hard, does it!

 

[1096]

my friends think i'm dumb because i can't remember peoples names and things.

epilim works really well but for the fog
i start uni soon. :anxious:

-after a seizure tho, im really clear. i mean after the 30-40mins deranged, im like crystal~


Anyway, halc, that sounds awful! I don't know much about your situation but ask the doc about epilim!

 

[brain]

Klonopin (clonazepam) is a member
of the Benzos aka Benzodiazepines:
same with Ativan, Diastat, Valium,
Xanax, etc.

Like with all Benzos - the individual
must be titrated off slowly and in a
progressive manner (it can actually
cause seizures if the titration is too
quick).

Benzos does have a bad side though
as it is addictive; however, for the
person with Epilepsy - for most of
them they do not have that 'addiction'
as it controls seizures (and why is
not fully understood), so this is why
some individuals can take 2 mg of
Klonopin for years and not have any
cravings for more or become addicted,
for example, than those who are non-
epileptic people.

It is not unusual for one individual
to take varying amounts; anywhere
from 20 mgs to 1.5 mg of Klonopin.
However - some people takes forever
to be titrated off while others can be
titrated off easily.

 

[halcyon]

So your reply made me cry because I don't abuse this crap. as a matter of fact I try to stay on as little of it as possible...but I know my speech will become weird and my back will start to hurt and my head feels like electric volts are shooting through it when it is too low in my system and people don't understand..I'm not taking it to get a high.,..I feel NO HIGH...the only thing I get from taking it is my body not spasming...and that I'm not ok with. I had a famous neurologist who insited I be on anything but this business (12 meds to be exact..I don't remember ever being awake for a year and a half)because I was in my twenties and people abuse "klonopin" she said.... but the last seizure i had was three years ago when she refused to refill it and upped a drug that has since been taken off the market...point is neurologists scare me..like I am really really scared to call one...she has never been on any of this shit and knows nothing of the withdrawals...sorry I'm rambling but your post was the first one that made me feel less like some drug addict and more like a person that has somehow (and I mean miracualously so) stabilized my life. THANK YOU! I haven't seen a neurologist in 3 years and havent had a seizure in 3 years..(coincidence?) any reccomendations on people to see in la? If it is against the rules nevermind..im just kind of lost and want despereately to be off this. Thank you again because people don't understand how I take such a strong medication without being "addicted"/messed up..I am(physically addicted) I guess but not in a thrill seeking "i'm so high" kind of way..you are the first person to understand or at least say that. Thank you!
-Allison

 

[halcyon]

I am so sorry I never responded to your post. I went to new york and had no access to a computer during that time...but your response...man I never thought any one else had to deal with that crap...I mean I know people do but I've never heard one other person say that it sucks to be on meds and sleeping/acting like a zombie all the time....and the withdrawals.....every vacation every trip home people go "this was just such a lovely break altogether...you didn't have a spell....etc." A spell? I want to hit those people in the face...my father sent all of my siblings to europe to celebrate their getting their degrees...I got mine from USC dec. 19th finally even though the doctors said i could never do it and all my father had to say was that I spent my "european trip on medical bills"...which i'm not asking for pity or anything I'm just saying that is how my life rolls...I don't understand this thing and the only person I tried to seek help from just hurt me...I sound so ridiculous and young and emotional but I'm not....I spent 6 years of my life in a hospital..for what I can rememeber.. i just want never to go back.

 

[Bernard]

... any reccomendations on people to see in la? ...

You might try contacting Kurt Othmer from the EEG Institute. He's not a neuro, but I think they can help (and they are located in Woodland Hills).

 

[halcyon]

So thank you. You are seriously one of the most understanding people in the world...I can be a bit tempestuous and especially last night when I couldn't sleep I posted threads that..well I wish someone had told me the things I posted but everyone is different and what I needed/need to hear is not necessarily going to help anyone on the forums...should I delete some? I'm not a doctor I just know what I've been through but if you think the things I am saying are doing more harm than good please let me know and I'll be happy to take them off. I really appreciate that I sort of ran a muck on this site and your are still helping me. Thank you. By the way I'm from Houston originally...just thought it was interesting you are from Friendswood.

 

[Bernard]

No problem. Everyone here pretty much understands the mood swings epilepsy can cause - from anger to depression. I'm pretty laid back / easy going and take most everything in stride.

Houston is a kinda big town too you know...