Clonazepam and parents not understanding

[JayceesDaddy]

Hello, I am new here so this is my story in a short version. I got viral meningitis and then started having seizures and then got ammonia poisoning from depakote. My neurologist said that I have always had epilepsy, but the viral meningitis lowered my seizure thresh hold, thus causing the seizures. I was diagnosed with Juvenile Onset Epilepsy, with having Myoclonic seizures.

I have been on and off a ton of meds, but am currently weaning off of keppra. And I am on Lamictal, Abilify, Onfi (clobazam), adderall, and 8 "emergency" clonazepam per month. My anxiety has always been bad but has gotten much worse since all of this has happened. My parents control my meds and give me my daily meds in a container every day. They had 1 clonazepam incase I need them. The thing is, I have such bad anxiety every single day and would like to get on a daily dosing of this. Also, 1 mg does nothing for my symptoms. My parents think I will OD if taken more than that and they do not want me on more than that. It is very tough for me to bring up a conversation and get my word in; I feel like no one understands how crazy my head feels inside and that 1mg of this does not help, and that my head is always running with bad anxiety, usually I dont even know why. I know that when given 2mg, it has helped and I am trying to tell them that or even try 1.5 and see if it helps. But I am having a hard time with them understanding me My doctor also believes that onfi will interfere with my clonazepam and give me negative side effects, which it does not when I do take it. He thinks it will because its named clobazam (generic) and that means it is just a normal benzo; it isnt though, it doesnt sedate you or have any effect like that on you and is even just a derivative of a benzo. There is no recreational value to clobazam and no negative things have occurred before when I took both medicines. I also know Clonazepam can help with epilepsy and specifically myoclonic seizures. That is the type of epilepsy I have. So why can I not be prescribed this to help my anxiety and to fight my epilepsy?

I am having a very hard time to get some help here and hoping that they will all understand that I know my body and that I know what will help. It has been a long 6 months since I had viral meningitis, and with every health problem, I was right about what medications I should be taking. I don't know how to explain any of this to my parents, as I feel they think that I want it for recreational reasons; but I am not and they control my medicines anyways. Anyone got any advice here or just anything to talk about the situation? Thanks guys.

 

[CathyAnn31]

Just wanted to give you a ***hug***. I can't imagine how frusterating that must be when no one will listen. I hope you find anxiety relief soon.

 

[chop456]

Hello and welcome to CWE. I hope you find it to be helpful, comforting and an all around great place to be.

I hope you are able to find a way to help ease your anxiety. Hugs until then. Glad you found CWE!

 

[KarenB]

Hi! I just wanted to explain something about Clonazapam, because we have used it for our little boy as a rescue med -- in fact, we just stopped using it about 4 days ago.

OK, first off, I can understand why you like this drug. We like it too -- it seems to have a really good effect on little Jon Jon. He has anxiety problems too and we could really see how much better it made him feel, and he seemed to be clearer mentally also. So we asked his doctor about using it all the time, and also did some research.

Well...here's the bad news about this drug -- it's not so much that you can OD on it, but the problem is that after about 3 weeks of being on it...the effect starts to wear off. So...to get the same benefit, you have to increase the dose. And then about 3 weeks later, you have to increase the dose again. So...eventually...you have to take a super high dose of this drug to be able to control your anxiety and/or seizures. And...keep increasing and increasing and increasing.

And then, the other bummer is that it's really easy to get addicted to this drug. So...when you do need to wean off...it's hard to do. Most people have what's called "withdrawal" seizures as they go through the weaning process.

And I have even heard accounts of this drug CAUSING seizures when taken in high doses. I just read one Mom's story -- they had begun using Clonazapam as a rescue drug for their daughter (that's why we have it for our son), but eventually he started taking it all the time. But even when on Clonazapam AND another seizure medication AND the ketogenic diet, their child was still having about 3 bad seizures every week. When they were finally able to wean the child off of Clonazapam (and it was really hard to do) he stopped having seizures -- he was seizure free for the next 6 months.

 

[pretty_liquor]

Has your doctor suggested any other ways of controlling your anxiety, and has it been made clear how much of a priority the anxiety is for you? Sometimes when they're focussed on just the epilepsy it can be easy to dismiss other things that are just as important to you.

 

[jyearta]

Hi JayceesDaddy,

I'm sorry to hear about your anxiety.

Please read KarneB post again.

I have been on clonazepam since 2003, was only taken 0.5mg at bedtime. Then my neur. added 1/2 tablet EVERY 4 hours in 2004.
I did not know that this is an addiitve med. or that your boby will need to up the dosages as your body becomes used to it. I found this out being on this forum.

I've tried cutting back to 1/4 tablet, JUST one of the times I take it and it send me to a place you do not want to go....

I know you do need something for your anxiety.

We do have someone in this forum is in the process of changing meds. --trying to come off clonazepam.

I know this is not what you want to hear, but please be careful.

 

[nicholas:)]

I'm switching from 5.5mg Clonazepam (started last September) to Pregabalin (started end of this July). I'm weaning myself off of the Clonazepam by 0.5mg a week. I'm currently on 300mg Pregabalin.

The Pregabalin is very good for anxiety and less drowsy than the Clonazepam. Look it up.

 

[JayceesDaddy]

Thank you all for the support

@KarenB, wow. I didnt know tolerance went up that quick, maybe this isnt the drug for me then, I hate upping my meds.

@pretty liquor: no he hasnt expressed any ways of dealing with it, although he did talk about possibly putting me on lithium? a couple months ago, but now he doesnt want to add it because hes scared of seizures(by the way, I havent had 1 since the hospital 5 months ago, just other side effects). I also dont think that I have made it clear enough how bad my anxiety is and that I believe that I need something daily, for some reason I am scared to bring things up to this doctor. This doctor focus's more on my depression rather than anything else.

@jyearta: thank you for the personal experience advice, the more I learn about this med, the less I want to take it because of fear of having to up them and then having withdrawals. hopefully there is something else that I can take every day.

@nicholasscott21: I was on pregabalin (lyrica) when I got out of the hospital and I as on it for nerve pain. we eventually weaned me off of it because my doctor thought it was contributing to me being tired and my nerve pain went away, so he didnt see a reason to be on it. I unfortunately did not gain the anti-anxiety properties that you have, I was also up to 300mg.

thank you everyone for your support and advice, it is greatly appreciated

 

[KarenB]

OK, Jaycees Daddy, let me get this straight,
You had viral meningitis, and then started having your FIRST seizures (not any before that)?? And you haven't had any since being in the hospital 5 months ago? (was that when you had meningitis?

Did your neurologist say WHY he thought you have had epilepsy all along and the illness was just a trigger? Were there specific waves or spikes or something like that on your EEG?

It is not unusual for children (and adults) to have seizures during a meningitis infection. However, if the children or adults survive the illness, it IS unusual to have continuing seizures.

Here's a link to an article by the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJM199012133232402#t=article+Results.
It has to do with the followup of a number of kids who had bacterial meningitis (or course, yours was viral, but I would think the end results would be similar.

The article is kind of technical, but basically, the only kids that had continuing seizures after being released from the hospital were kids for whom the illness caused other neurological issues -- such as hearing loss, or mental retardation, or motor problems (walking, etc.).

I'm not a medical expert, just a Mom, but if I were you OR your parents, I would want a VERY clear explanation from your neurologist as to why he thinks you have epilepsy, rather than seizures associated with a severe illness that caused brain inflammation and high fever.

 

[KarenB]

Also, right now you're on 4 medications in addition to your Clonazapam rescue meds (but if you haven't had a seizure in 5 months, I'm assuming you're not taking it)
-- let's take a look at some of the side effects of the ones you ARE taking:
Lamictal (for seizures and depression) -- one side effect is anxiety. Another is insomnia, which can contribute to anxiety
Abilify (for depression) -- side effects -- agitation, anxiety and insomnia
Clobazam (btw, this is the same family as Clonazapam)(used to treat seizures, anxiety, and depression) - this medicine can cause sleepiness and problems with walking and talking, but probably doesn't contribute to anxiety -- in fact, may help. However, be warned that it has similar issue to Clonazapam in terms of addiction and withdrawal seizures.
Adderral - (for ADHD) this drug is an amphetamine -- a stimulant (but somehow works to decrease hyperactivity in some kids) -- anyway, this drug can cause nervousness and anxiety, irritability and insomnia.

OK, once again, not a medical expert, just a Mom, but it seems that 3 out of 4 of the meds you are taking could be contributing to your anxiety issues (which you say have gotten worse since your illness).

And...I'm wondering if you really have to be on 2 seizure medications.

Now, absolutely do NOT stop taking your meds because that could have disastrous consequences. But it might be worth while having your folks take you to a different neurologist for a 2nd opinion. I'm assuming you're a teen, so I would recommend a pediatric neurologist connected with a large teaching hospital.

And you might want to ask to be referred to a psychologist or mental health counselor for therapy in dealing with depression and anxiety other than piling on meds.

 

[valeriedl]

I don't know anything about clonazepam so this is more of a question in general.

How long have you been on the same meds and doses? It took a good many years before my neurologist found the right 'recipe' (if you want to call it that) for me. I had so many different side effects on so many different meds and doses that he was constantly changing things around.

Right now what I'm taking is pretty good for me. I'm doing alot better than I was. I'm still having seizures but I went from about 4 horrible seizures a week to about 4 not so bad seizures a month.

I know it's a pain to keep changing your meds around but in the end it's worth it.

 

[Cint]

However, if the children or adults survive the illness, it IS unusual to have continuing seizures.

Here's a link to an article by the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJM199012133232402#t=article+Results.
It has to do with the followup of a number of kids who had bacterial meningitis (or course, yours was viral, but I would think the end results would be similar.

The article is kind of technical, but basically, the only kids that had continuing seizures after being released from the hospital were kids for whom the illness caused other neurological issues -- such as hearing loss, or mental retardation, or motor problems (walking, etc.).

I'm not a medical expert, just a Mom, but if I were you OR your parents, I would want a VERY clear explanation from your neurologist as to why he thinks you have epilepsy, rather than seizures associated with a severe illness that caused brain inflammation and high fever.

I've had E for over 30 years now and never suffered from meningitis, encephalitis, a head injury, etc. However, when I was still suffering from many seizures a day and looking for relief by seeing different doctors, I was asked many times if I ever had meningitis. So one CAN continue having seizure after recovering from meningitis.

 

[Cint]

Also, a while back this was posted on CWE about Lamictal and meningitis:
http://www.fda.gov/Drugs/DrugSafety...ormationforPatientsandProviders/ucm221847.htm

And more info about Abilify. It is an anti-psychotic drug used for bipolar and can cause hyperglycemia (High blood sugar) or diabetes. Call the dr. if you start losing weight, notice an increase in thirst, or loss in vision. It should also be used with caution for patients with seizures.

Adderall is a drug used for ADHD. My son used it once and it made him very nervous, anxious.

It seems to me you are on way too much medication.

 

[KarenB]

I agree that JayceesDad is probably on way too much medication.

Seizures started when he (she?) had meningitis -- unlikely on Lamictal prior to meningitis, unless it was being prescribed for depression.

Jaycees Daddy -- I would recommend when you go back to the doctor, take a typed list of the neurological problems you are having, and put them in order according to how much they are affecting your quality of life. For instance, you could list it something like this:
1) Anxiety (then in two or three bullets under that, because doctors have short attention spans, list the anxiety symptoms you are having, a question as to whether this is related to any of your current meds, and what alternative treatments are available-- including non-medical treatment)
2) Depression (do the same thing with this)
3) Epilepsy (put question -- since 5 months seizure free, what about another EEG and considering reducing or weaning at least one of the seizure meds?)
4) ADHD -- (what coping skills could be substituted for medication?)

I'd be really proactive with the doctor about getting off of Adderral. There's lots of coping skills to handle ADHD (especially at your age and maturity level) that don't need to involve meds. It sounds like that was probably something they put you on a few years back, and just never took off.

Now that you're being weaned off of Keppra, you might find a good deal of relief from depression -- Keppra is famous for depression side effects. And, once again, there are non-medical ways to boost your seratonin levels that don't have to involve meds (exercise, chocolate, getting out in the sunlight, meaningful social life, contributing in some way to family and community, etc.)