Epilepsy Talk
What do Stevie Nicks and Whitney Houston Have In Common? | June 1, 2014
Seventies-era rock star Stevie Nicks is the poster girl for the perils of Klonopin addiction.
In almost every interview, the former lead singer of Fleetwood Mac makes a point of mentioning the toll her abuse of the drug has taken on her life.
While promoting her new solo album, In ‘Your Dreams’, she told Fox that she blamed Klonopin (clonazepam) for the fact that she never had children.
“The only thing I’d change [in my life] is walking into the office of that psychiatrist who prescribed me Klonopin.
That ruined my life for eight years,” she said. “God knows, maybe I would have met someone, maybe I would have had a baby.”
Whitney Houston’s songs became the universal voice of love. That’s how much Whitney came to mean to so many of us who knew her only through her music.
She came to embody all that precious emotion we carry in our hearts.
Whitney Houston’s death at 48, has raised the specter that she was taking Xanax (alprazolam) at the time she died.
What both situations have in common is that they were taking drugs in the benzodiazepine family.
And when it comes to prescription drugs that are able to destroy you, it’s hard to top the benzodiazepines.
Experts feel that chronic use of benzodiazepines may lower seizure threshold, especially in patients with epilepsy or predisposing disorders.
This is beyond the withdrawal mechanism which can occur even in low dose use for long time. That’s why it’s rarely used for a long-term in seizure disorders.
The operative word here is: long time.
Another “benzo” which has been lethal to millions of Americans is Klonopin.
Klonopin
It’s not as famous as OxyContin, but the prescription drug Klonopin can be just as dangerous.
Klonopin or clonazepam, was originally brought to market in 1975 as a medication for epileptic seizures.
Eventually, though, the medication was given patients who were subject to panic attacks and to addicts trying to get off drugs or alcohol, because of its ability to prevent seizures and control the symptoms of acute withdrawal.
The latter decision led Klonopin and other benzodiazepines to become the second most abused class of prescriptions, after opioid painkillers like Oxy.
But what Klonopin can do to a patient who abuses it is pretty horrific.
Scientists can’t say for sure what Klonopin does when ingested, except that it dramatically affects the functioning of the brain.
This much we know: If your brain is on fire with electrical signals — like, say, you’re having an epileptic seizure — a dose of Klonopin will help put out the flames.
It does so by lowering the electrical activity of the brain. But specifically which electrical activities it suppresses is something that nobody really seems to know for sure.
But when a patient goes off of Klonopin, there is a burst of excess neural firing and cell death. That’s the havoc we hear about that is mistakenly called withdrawal.
And that’s why Klonopin, like nearly the entire class of benzos, causes such unpredictable reactions in people.
Among the celebrities who have taken benzodiazepines with unfortunate results:
Actress-model Margaux Hemingway, who died in 1996 from a benzo-barbiturate mix…
Actress-model Anna Nicole Smith, who died in 2007 after an overdose of Klonopin and other drugs…
Author David Foster Wallace, who had Klonopin in his body when he hanged himself in 2008.
Since then, Klonopin, along with the other drugs in this class, has become a prescription of choice for drug abusers from Hollywood to Wall Street, where drug abuse for any reason is rampant.
Xanax
Although Xanax (alprazolam) is the most commonly prescribed benzodiazepine, it’s probably one of the most dangerous.
It now accounts for as many as 60% of all hospital admissions for drug addiction, according to some research.
What’s more, violent and psychotic responses to Xanax are not limited to humans.
In May 2009, a 200-lb chimpanzee being kept as a house pet by a Stamford, Conn. woman, went on a rampage after being dosed with Xanax, escaping into the neighborhood and ripping off the face of a friend of its owner.
Sometimes, the continuous use of Xanax causes certain side-effects and the permanent use of Xanax can even give rise to biochemical transformation in the body which, in turn, causes different effects.
Since Xanax is an anti-depressant affecting the nervous system, it slows the neural activity and the ability of one’s mind to work. Especially on a high dose.
When you look at both drugs, you can see the commonality. Just like Stevie Nicks and Whitney Houston were singers, both drugs are benzodiazepines and essentially they work the same way.
They affect the brain by enhancing the effects of gamma-aminobutyric acid (GABA), a chemical that is naturally calming.
GABA can slow down or stop certain nerve signals in the brain.
It’s important to remember is that both drugs are purposely prescribed to treat epilepsy and it’s causes.
They are not recreational drugs, even though some choose them for that and other benzo cocktails.
And as far as addiction goes, anything can be addictive if misused.
Perhaps the reason I’m arguing so vehemently is that I am on both Klonopin — with Xanax, as a back-up in case of emergency. (Panic attack?)
I have taken the same amount for five years. And I feel — like anything else — if you abuse these drugs, they will abuse you.
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Resources:
http://www.huffingtonpost.com/dr-peter-breggin/xanax-whitney-houston_b_1288122.html
http://phoenixrising.me/archives/12200
http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=439×1228010
https://www.healthtap.com/topics/does-xanax-cause-seizures
http://relaxationguidance.com/longterm_effects_xanax.html
http://www.drugs.com/answers/can-xanax-help-seizures-like-klonopin-does-337531.html
http://anxiety.emedtv.com/xanax/xanax.html
Tags: Benzodiazepines, drug abusers, Hollywood, Klonopin, Margaux Hemingway, Stevie Nicks, Wall Street, Whitney Houston, Xanax
99 Comments »
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About the author
Epilepsy Talk 
Nicks did not die, in fact she turned 66 this past week.
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Comment by Baruch — June 1, 2014 @ 3:11 PM
WOW! I stand corrected. (And after all that research.) I guess their common ground was an addiction to benzos.
Thanks so very much Baruch!!!
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Comment by Phylis Feiner Johnson — June 1, 2014 @ 5:20 PM
I am not a doctor, but, If you are trying to get off these kinds of meds, here is a suggestion I can give you that worked well for me to minimize the withdrawl effects. Take ten of your pills and carefully shave off just a sliver from each pill using a razor blade, take those for the next ten days, then take the next ten pills after that and shave off a little more of what you did the previous ten and continue this pattern until you are down to half a pill then take half a pill for two weeks & start the process over again with the half pill untill you are down to taking a sliver & then none. Be accepting that Each time you cut more off each set of ten pills, expect to have some of those uncomfortable feelings like your falling out of an airplane or falling back in your chair for a day or so. Resist the temptation to take more when you are having these feelings. Sincere prayer will help you through these moments. My experience trying to get off a half or full pill at a time never worked for me, but this gradual, very gradual, reduction in the amount I was taking worked wonders. it took about 4 or five months for me to get completely off, but if you will have the patients to stick it out adjusting as you go, you can realize your escape. Every month for about 2 years after that I could feel my clarity come back and the brain fog I was experiencing has lessened as well.
Alan
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Comment by Alan — June 1, 2014 @ 10:00 PM
While withdrawing from the prescrption might be one ordeal to overcome, for most people desperate to controlling their seizures, there are not much of alternatives than being STUCK with the prescriptions, putting up with ALL kinds of side effects.
It’s a struggle to overcome both the medical hardships & prescription side effects.
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Comment by Gerrie — June 2, 2014 @ 7:36 AM
Obviously, Alan’s bright idea & personal experience is certainly a great way to minimize the shocking effects of immediate & total withdrawal.
Thanks to my crusade, searching for medical stability, I’ve learned that adapting into new physical metabolism & neurological chemistry, certainly takes gradual adjustment.
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Comment by BahreNegash Eritrea — January 6, 2019 @ 2:02 AM
I was told by my sleep Dr (specialist) not to take 10 mg. of melatonin to take no more than 5 because the body cannot process that much I used to take 10 was a lot groggier. just FYI. wish they would focus more research on sleep.
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Comment by SC — January 6, 2019 @ 11:48 AM
Thanks for the tip. I’ll try 5 MG instead of 10. Less is better, right?
As for sleep studies, many major hospitals have sleep labs. Ask your neurologist.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 12:10 PM
yes my DR a specialist for sleep and lungs he said the body processes 5 mg he told me to get the kind you put under your tongue.He told me 10 will keep you groggy next day. It is just meant to tell your body almost bed time
brainwaves are helping me
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Comment by SC — January 6, 2019 @ 3:34 PM
So, some say 5 MG helps more and some say 10 MG is the answer for Melatonin.
I never knew about putting it under your tongue.
Thanks for the tip!
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 3:39 PM
sublingual
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Comment by SC — January 6, 2019 @ 5:27 PM
Thanks so much.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 5:30 PM
And it’s always a crap shoot.
What works for one, doesn’t necessarily work for another.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 12:02 PM
so true! took me10 months still not there yet. I do as much as I can when I feel well enough
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Comment by SC — January 6, 2019 @ 3:25 PM
I agree! Klonopin has a half life of 45 or 60 days! I would do the same for me though I would take it even slower. I got off Klonopin 3x by myself but my body needs it tried Gabapentenin 1300mg side effect too great but 400 mgs. with 4 mg Klonopin
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Comment by SC — January 6, 2019 @ 11:53 AM
I found Klonopin to be more effective for me.
But, I’ve switched over to Xanax.
One in the morning and two at night.
It helps with anxiety, so it helps me sleep.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 12:22 PM
I take for myocolnic seizures…..Xanax is worse from what I read?
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Comment by Sc — January 6, 2019 @ 3:22 PM
I’ve been taking Xanax for years without any side-effects or change (upping the dose).
I, personally, have not found it to be addictive, but everyone is different.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 3:33 PM
Would this be a good way to wean off Keppra? My 16yr takes Keppra 500mg: 2.5 tabs am and 3 tabs pm. Just wondering…..
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Comment by Ellie — June 5, 2014 @ 11:28 AM
Ellie, don’t even THINK about weaning off of Keppra by yourself.
Note your symptoms and reactions, speak to your neuro and ask him what your alternatives are.
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Comment by Phylis Feiner Johnson — June 5, 2014 @ 1:43 PM
My son is currently weaning off Keppra, under strict supervision of his neurologist, who is doing this very slowly and cautiously, for which we are grateful. Son is transferring over to Topamax, which counteracted some of the bad side effects of Keppra.
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Comment by Martha — June 5, 2014 @ 2:12 PM
I totally agree with you Gerry, yet Alan, I think yours is a very clever way to titrate yourself down slowly, without feeling the dramatic side-effects.
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Comment by Phylis Feiner Johnson — June 2, 2014 @ 10:01 AM
There is a clear liquid version of Lorazepam (Ativan), but we have not tried it, so I cannot vouch for it. Switching from tablets to the liquid form of the same drug can present other problems. You can pulverize and liquify the tablets yourself, however. There is a huge amount of information (and support) at:
http://www.benzobuddies.org
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Comment by Martha — June 3, 2014 @ 8:45 AM
Hi Martha, Thanks for the link!
The only real question I have is how would you translate the tablet to liquid?
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Comment by Phylis Feiner Johnson — June 3, 2014 @ 12:16 PM
Re: converting tablet to liquid. It’s tricky, and it may vary from one benzo to another. There is much information at Benzobuddies.org. You need to turn your kitchen into a chem. lab. You’ll need mortar and pestle to pulverize the tablet, glass cylinders with graduated markings, a pipette (or at least a very finely graduated dropper). Lorazepam is not easily soluble, but some people can get by with milk. All the instructions are at Benzobuddies, and the people there are very helpful. They will even help you put together a protocol.
It has been exceedingly difficult for us, because our son has autism, and feels the slightest change. He also developed seizures (possibly as a result of benzo dependency/withdrawal). We are working now with a neurologist who is helping.
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Comment by Martha — June 3, 2014 @ 12:37 PM
Whew! What an ordeal. My heart goes out to you Martha.
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Comment by Phylis Feiner Johnson — June 3, 2014 @ 1:49 PM
And medical marijuana remains illegal nation-wide
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Comment by UptownGal — June 3, 2014 @ 7:01 PM
You might want to read these articles:
Medical Frequently Asked Questions:
http://norml.org/marijuana/medical/item/medical-frequently-asked-questions
Medical Marijuana (Legal Issues)
http://norml.org/legal/medical-marijuana-2
Pivotal Point Is Seen as More States Consider Legalizing Marijuana
Epilepsy Foundation Calls for Immediate Action on Medical Marijuana
http://justsaynow.firedoglake.com/2014/02/20/epilepsy-foundation-calls-for-immediate-action-of-medical-marijuana/
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Comment by Phylis Feiner Johnson — June 4, 2014 @ 10:56 AM
it should be legal could help so many but drug companies would lose money
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Comment by SC — January 6, 2019 @ 5:29 PM
You won’t be surprised to hear that pharmaceutical companies are working on their own strains of THC and CBD.
Money talks!
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 5:32 PM
Another opinion on medical marijuana, from Dr. Orrin Devinsky:
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Comment by Martha — June 4, 2014 @ 10:54 PM
Oh Martha. He’s my hero! When I met him, I asked if I could kiss his feet! Imagine his reaction! 🙂
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Comment by Phylis Feiner Johnson — June 5, 2014 @ 1:41 PM
I had a friend who was addicted to Benzo and slept 2 or 3 hours per day. It was prescribed for her panic attacks.
Well after many years of taking it, she was out of touch with her family and her 2 children. Luckily i met her on the internet and convinced her how badly this drug has messed up her life and how she was sleeping it away and how she was loosing good friend left and right because of it. Well after many months of talking, i finally convinced her to stop. But she couldn’t she went right back to it. After a few tries and failures, i told her to ask for help from her husband. Which she did, but even that didn’t work. So the next step was for medical intervention. That also took 2 attempts. The 2nd attempt finally worked.
But the main issue is that people get used to it and they will want to increase it more and more to get the effects. So much more that they can’t control themselves eventually.
Benzo drugs can take over your mind and it can cause you to do some weird think you wouldn’t do without it.
Benzo drugs should not be taken for more than a couple of weeks. Any longer and it can cause problems rather than help.
I take Ativan, which is a Benzo, but i only take it when i feel a seizure coming on. I take 2 x 2mg tablets when that happens, and if i don’t sleep right away, i’ll have hallucinations and i will not feel normal till about 2 days later.
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Comment by Zolt — June 5, 2014 @ 6:16 PM
I have been on Benzos foe 33 years they help with seizures I have no other choice if I want to live. I do not sleep I woke up every 5 seconds 33 years ago.
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Comment by SC — January 6, 2019 @ 5:33 PM
OMG. If benzos are the only thing that help you sleep.
But, once again, let me suggest you supplement them with Melatonin.
It natural, non narcotic, and goes with your sleep cycles to make you drowsy at bedtime.
(At least that’s how it works for me.)
I take either 5 MG or 10 MG.
Now, I can’t decide which is better when reading this conversation.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 5:39 PM
Zolt, it’s terrific news that your friend was able to get help and get off the Benzos.
But horrible side-effects aside, there are people who are “addictive” personalities.
I’ve been taking 0.5 Xanax for five years, for emergencies. I’ve never increased the dose because — like you — I only use it occasionally, rather than depending on it daily.
As I said (an overstatement, I guess) “if you abuse these drugs, they will abuse you.”
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Comment by Phylis Feiner Johnson — June 5, 2014 @ 6:55 PM
I agree with Phylis.Dont mess with Keppra on your own. My earlier comments about weaning off are directed at the types of meds discussed in the artucle.. The Benzos, pines and pams, Mine was Lorazepam (Ativan) origionally prescribed as an assistent to stop sezures and to deal with my anxiety the seisures created. I had aldo tried Keppra for a while which gave me good seizure control but I was not the most pleasant person to be around. Adding in the Lorazepam was not a pretty picture. For me,it increased seizures, and inflamed the agitation factor of Keppra. Now that I am off both. Life is wonderful, with 95% seiizure control with Dilantin (brand name only VERY IMPORTANT) and Vimpat. The Dome only sticks around for about an hour or so. Those taking seizure meds know what I mean when I say Dome or 20 pound helmet!
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Comment by Alan — June 6, 2014 @ 11:34 AM
that drug was not recommended to me for what I have with all my research and seeing a specialist. I don’t have epileptic seizures although if I don’t take my meds I could.
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Comment by SC — January 6, 2019 @ 5:37 PM
GOOD FOR YOU ALAN! And thanks so much for your recommendations and specificity.
I, for one, don’t know what a “dome” is.
But, in terms of helmet information, you can go to “Helmets for your Health”
(It’s not “published yet.)
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Comment by Phylis Feiner Johnson — June 6, 2014 @ 5:26 PM
oops, I guess its not a very good descripion. Dome is my word for how my head feels after taking seizure meds about 20 minutes after taking them to the time it takes for alertness and clarity to come back. its just describing the sense of pressure on the head and the weitghts clipped to my upper eyelids…. Actually, come to think of it, this is describing the feelings of being toxic on the med,not daily use.
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Comment by Alan — June 7, 2014 @ 4:59 PM
have you tried Bulletproof coffee? it took my fogginess away in 7 mins. coffee, 1 tbl. organic, unrefined, cold pressed coconut oil, work up to 1 tbl. of Bulletproof coconut oil all short chains and I had a splash of cream mix it all together I use a little mixer…great tasting coffee. a lot of calories but one is not hungry I eat first meal at 2pm I also add the collagen protein it is missing one amino acid tryptophan which the half and half takes care of that. but my coffee is almost 500 calories but it really helps will be curios when I get blood work supposedly helps with bad CHL too.
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Comment by SC — January 6, 2019 @ 5:42 PM
I felt like my mind and body were not in sync
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Comment by SC — January 6, 2019 @ 5:43 PM
I can understand that.
Sometimes it takes time for my MIND to catch up with my body.
Other times, it’s the opposite. 😦
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 5:46 PM
Fascinating. I know coconut oil is VERY good for you. But the calories kind of stop me in my tracks.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 5:45 PM
Good description! Thanks, Alan.
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Comment by Phylis Feiner Johnson — June 7, 2014 @ 5:05 PM
scary my regular doctor gave me that clonazepam just the other day to helpme with my anxiety as it appears my anxiety plays a part in my seizures.. seeing neurologist soon.. as well… I won’t go crazy on these pills.. they last longer then the Ativan… lorazapam. any other affects they can have?
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Comment by laura — January 25, 2015 @ 5:01 PM
I find that Klonopin has been very good for me — anxiety and seizure wise.
And no addiction worries. I’ve been on it with no change of dose for 5+ years.
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Comment by Phylis Feiner Johnson — January 25, 2015 @ 5:26 PM
What about when you are the person who always has to stay strong for everyone else and panic attacks are horrible? I always take klonopin as prescribed.Now I’m trying to stop and I don’t know who I am without it.
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Comment by Angela Foxen — December 4, 2017 @ 7:45 AM
Klonopin is a tough one. You take it because you clinically need it and then, although you still clinically need it, you’re stuck.
I’m one of the lucky ones. I’ve been taking Klonopin for 10 years, without a change in dose or frequency. But I say. I’m one of the lucky ones.
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Comment by Phylis Feiner Johnson — December 4, 2017 @ 8:49 AM
I am telling you brainwaves are helping me Ihave been on Klonopin for 33 years 4 mg. and 400 of Gaba
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Comment by SC — January 6, 2019 @ 5:45 PM
That’s wonderful!
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 5:47 PM
Just for the record. Stevie Nicks was not “addicted” to Klonopin. She was taking a Doctor PRESCRIBED dose and the result of that PRESCRIBED dose of Klonopin was a DEPENDENCE to Klonopin. Big difference.
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Comment by Jim — February 23, 2018 @ 4:44 PM
Thank you for the clarification, Jim.
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Comment by Phylis Feiner Johnson — February 23, 2018 @ 4:46 PM
actually she was addicted she abused it I read an article on her she said it was easier to withdraw from Heroine. I could get off it but then I don’t sleep I seiz.
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Comment by SC — January 6, 2019 @ 5:46 PM
Heroin is a nasty place to be from all reports.
But, Klonopin being worse?
I disagree.
Although, I’ve only had experience with Klonopin.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 5:50 PM
She was addicted and so am I ! I am working on getting off Klonopin after 28 years! 4 mg. I did not realize how much it affected me until I weaned off but still experienced withdrawals. I had to go back on 25% of the meds I weaned off I could not handle it fell much better off meds can’t wait u til out of my system but will take my time 28 years is a long time was off for almost 2 weeks could not drive or wor. Be careful with this drug.
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Comment by Sandra Carrano — May 10, 2018 @ 9:45 PM
I’m lucky. I’ve been taking Klonopin for 10+ years without a change in dose.
But being addicted must be terrible. And the warning is well taken.
But kudos to do for having the fortitude to wean yourself off. That must have been very difficult, but rewarding, too.
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Comment by Phylis Feiner Johnson — May 11, 2018 @ 6:51 AM
I was on 4 mg. Down to one but still experiencing minor withdrawals after 7weeks of weaning and almost 2 weeks off. It was so bad I took .5 and felt better in less than 20 mins.
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Comment by Sandra Carrano — May 10, 2018 @ 9:47 PM
Wow, that’s saying something to the levels you were taking.
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Comment by Phylis Feiner Johnson — May 11, 2018 @ 6:52 AM
remember Klonopin has a long half life I figured it would be about 45 days for it to be out of my system when I stopped but had to go back on no other meds help me.
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Comment by SC — January 6, 2019 @ 5:49 PM
What about Xanax?
Or is anxiety not a problem?
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 5:51 PM
my Doctor does not want me to take anymore benzos I have Xanax plus it definitely puts me to sleep but for no more than 2 hours I cant keep popping one so I use other things. I am very responsible with meds. washed my car today had a decent day have to do what I can when I feel well enough . Sad isn’t it? I cant wake up go to beach or breakfast. I was so healthy younger. A Master trainer with Nautilus years ago. still train but not like I used to.
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Comment by SC — January 6, 2019 @ 6:02 PM
No, it’s not sad.
You do your best and you succeed.
Even if it’s not at the same level, you DO it.
And that’s a triumph in itself.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 8:50 PM
Thank you a lot of people my age are enjoying life doing things but one must get up early I woke up after 10:30 am today
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Comment by SC — January 7, 2019 @ 12:16 PM
That’s fine. When you need sleep, heed your body.
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Comment by Phylis Feiner Johnson — January 7, 2019 @ 12:53 PM
You are right everyday is a triumph! Every obstacle Makes me stronger ….Most important God has a plan led me to brainwaves.
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Comment by Sc — January 9, 2019 @ 10:00 AM
Congratulations on your positivity! And your perseverance.
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Comment by Phylis Feiner Johnson — January 9, 2019 @ 12:23 PM
And THIS is what neurologist, BIG PHARMA, FDA & AAN all want, drugs that work for a few people while the most of us who gets put on these drugs gives to THEM JOB & MONEY SECURITY for life, if we do not die from them later. I can say too that the BARBITUATES as AED’s did worse things to the youngest of brains as I HAD TO TAKE THEM & HAD NO SAY IN THE MATTER, & today I have a 58 years old brain that DID NOT develop as it should had all thanks too AED’s that were BARBITUATES & it has never had any real balances of the brain chemicals of GABA, DOPAMINE & SEROTONIN, but when glucose gets lower or some other chemical actions from food toxins of MSG’s & NITRATES or something else I may not know that spikes GLUTAMATE, that’s all what the doctors & BIG PHARMA cares about that a human brain may always be not normal for a persons life, so that drugs & neurologists are a need every calendar year at least for 1 visit & more drugs when needed for something else, after the results of all the drugs have dome MORE DAMAGES TO THE HUMAN BRAIN that you never would have had if AED’s were not a demand to take 365 days a year. I was OFF all AED’s for about 6 months & WOW !!!!!! I can imagine & KNOW TOO WHAT THAT WAS LIKE, until I ate something that I thought to myself before I ate it that I AM CURED or HEALED, & the BOOM !!!! another Grand Mal seizure happened, as that happened over 6 years ago. That seizure created a concussion which changed everything since that day, but I still do not have MORE seizures just more frustrated to live with as you get closer to 60, as I never when I was 5 years old thought I would ever have seizures at 10 years old, 20, 40, 50 & etc….BIG PHARMA & NEUROLOGISTS are some of the most richest people on the earth & you can not say is brains were never attacked by the food & drug industries & MONSANTO, that there maybe would not be 20 MILLION instead of over 65 MILLION living with seizures today. THEY ALL $MILE WHEN THEY GO TO THE BANK !! I DO NOT SMILE WHEN I GO TO THE BANK !!!!
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Comment by CD — January 5, 2019 @ 11:17 AM
I am on Klonopin I am working with a specialist tried to change to Gaba the side effects were too great and I was not sleeping at all…Nocturnal Myoclonus I am in bed for 12 hours to get 5 -7 hours of interrupted sleep. I am using brainwaves…deep sleep with headphones it is helping. I am 58 on SSDI hard to work part time……there are no other meds to help me still working with a specialist desperately searching for help. There is no known cause or cure for what I have. 😦
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Comment by SC — January 5, 2019 @ 11:30 AM
I wish I had an answer for you.
What I do when I can’t sleep is to take 10 MG of Melatonin, a natural substance.
I know that’s small comfort to you. 😦
Have you ever considered something else, like a VNS?
Vagus Nerve Stimulation…Is it for YOU?
https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/
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Comment by Phylis Feiner Johnson — January 5, 2019 @ 3:10 PM
C D — Money walks and bullshit talks.
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Comment by Phylis Feiner Johnson — January 5, 2019 @ 3:04 PM
I would not have something implanted. I take 4 mgs of Clonazepam and 400 mgs of Gaba but at least I can function. I have been on clonazepam since 1990…..I fell broken my social life well there is none and I am struggling to build my business back but still not well. trying to change meds really took a year of my life. Praying my quality of life will improve I never abused the meds only take at night. How does one meet people at my age with a disability?
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Comment by SC — January 6, 2019 @ 11:45 AM
I would suggest adult support groups.
If you do find a support group, you’ll find an amazing wealth of camaraderie, compassion and caring.
Not every group does the same things. Even groups with similar activities may have different results because of the individuals involved…but think of it as a learning and bonding experience.
You’re interacting with people who share a similar illness, but perhaps different solutions. You can share your feelings, fears, concerns and perhaps get answers.
But most importantly, you can join a community of caring and know that you’re not alone.
To be honest, I’ve started a support group with the help of my local EFA and a local hospital – complete with an epileptologist!
We have an established time and place to meet…with some materials available…snacks…and occasionally a guest speaker.
Plus, everybody gets their fair share of time in with questions, suggestions and even resources not everyone’s familiar with.
I know that starting a support group is definitely not for everyone. However, there are resources available where you can get the help – and materials – you need.
The Epilepsy Foundation, as I found out, is only too eager to help…affiliates can provide information and referral assistance; maintain individual and family support services.
To find one in your area simply enter your zip code, state and hit “search.” https://www.epilepsy.com/affiliates
Not every group does the same things. Even groups with similar activities may have different results because of the individuals involved…but think of it as a learning and bonding experience.
You’re interacting with people who share a similar illness, but perhaps different solutions. You can share your feelings, fears, concerns and perhaps get answers.
But most importantly, you can join a community of caring and know that you’re not alone.
There’s another interesting group I found called “Epilepsy Meet-Up” where you can meet other local people with epilepsy.
Friends and family members are also welcome. On the site, there’s an interactive map of Epilepsy Meet-Ups around the world.
(And if you want to start or find a support group, this could be a good place to know about!) http://epilepsy.meetup.com/
“Add Coach” provides advice on how to start and run a support group. http://www.addcoach4u.com/support/howtostartasupportgro.html
I hope this helps. I know it’s helped me.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 12:07 PM
yep and they say the economy is booming I don’t see it
but we have illnesses if I could I would work a lot more be out and about gathering client but it is 3:27 pm haven’t eaten yet today. no time……I spend minimum 12 hours in bed to get 3-7 hour of very interrupted sleep.
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Comment by SC — January 6, 2019 @ 3:28 PM
Nocturnal seizures?
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 3:35 PM
Myocolonic more like jerks I had them every 5 seconds 33 years ago
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Comment by Sc — January 9, 2019 @ 9:55 AM
Nocturnal seizures or all the time?
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Comment by Phylis Feiner Johnson — January 9, 2019 @ 12:19 PM
at night all the time not during the day…slept awful last nite Dr. cut back 100mg on gaba
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Comment by SC — January 11, 2019 @ 12:42 PM
Perhaps this article will help:
The Nightmare of Nocturnal Seizures
https:/epilepsytalk.com/2018/02/07/the-nightmare-of-nocturnal-seizures/
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Comment by Phylis Feiner Johnson — January 11, 2019 @ 12:47 PM
Thanks
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Comment by Leone — January 6, 2019 @ 3:08 AM
what can one do when benzos are all that is available to help with my condition. I have been on them for 34 years. no other meds help I only take at night never abused
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Comment by SC — January 6, 2019 @ 3:30 PM
Well, I for one, can’t discourage you, because I’m in the same boat.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 3:36 PM
well we have each other and I thank you for the support groups. I cannot plan anything other thank work which has taken a big hit. I feel defective.
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Comment by SC — January 6, 2019 @ 5:56 PM
OMG. You’re anything other than defective.
And you’re right. We DO have each other.
That’s what Epilepsy Talk is all about.
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Comment by Phylis Feiner Johnson — January 6, 2019 @ 8:48 PM
Last nite woke up 16 times fully aware of 4 according to sleep tracker
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Comment by Sc — January 9, 2019 @ 9:56 AM
It DOES sound like nocturnal seizures.
Does your sleep tracker help you with meds?
I take 10 MG of Melatonin when I can’t sleep.
But it sounds like your situation is more serious.
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Comment by Phylis Feiner Johnson — January 9, 2019 @ 12:22 PM
thank you for the link my Dr said the body cannot process 10 mg of Melatonin it makes one groggy next day …I used to take 10 feel better at 5 sublingual
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Comment by SC — January 11, 2019 @ 12:59 PM
Thanks for the tip.
I take 10 MG and feel just fine.
But others report the same reaction as you.
(I guess I’m just more hyper!)
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Comment by Phylis Feiner Johnson — January 11, 2019 @ 1:18 PM
In the article you had mentioned that anything can be addictive if misused which is incorrect. When it comes to psychiatric medicine such as benzodiazepines, antidepressants, and antipsychotics, even sleep aids like Ambien. You can still develop an “addiction” but the proper term is called dependence, taking your medication as prescribed. Some people can develop a dependence after taking them for only a short period of time.
ADDICTION AND PHYSICAL DEPENDENCE ARE NOT SYNONYMOUS
Check out the link down below
http://w-bad.org/addiction-dependency/
For more helpful information about the dangers of benzodiazepines please check out w-bad.org
ABOUT W-BAD
http://w-bad.org/about/
-Recent benzodiazepine survivor/ warrior
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Comment by Lillian — January 11, 2019 @ 3:22 AM
Thanks for the clarification, Lillian.
Point well taken.
Congratulations on being a survivor. And winning YOUR battle!
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Comment by Phylis Feiner Johnson — January 11, 2019 @ 11:06 AM
Its so true , even with gabapention * , even heard Keppra is on listing for migraine & also pain meds .. after my son 35 at the time , had stroke / heart attack , the neuro , did MRI with dye , saw spot on R side , the VA drs , though , well , could be seizures too .. gave him Keppra 750 mg .. when he mention this , told him to check with dr , to see if he could take B-6 B-12 , magnesium cause it will , slow down the “Keppra ~Rage ” the dr totally agreed what i mentioned 100% .. couldnt believe , his rage .. sure he already has temper , HBP .. then after taking the b 6 & 12 , he can tell .. but told him been on the vitamin for longest time too that his body would adjust , now off the keppra , but on blood thinners for stroke/ heart issues { VA drs noticed something on the heart monitor… asked if could be during sleep mod or awake .. couldnt answer
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Comment by Cathy Flowers — June 2, 2020 @ 9:47 AM
Cathy, do you think it could be nocturnal seizures?
These are usually tonic-clonic. They might occur just after a person has fallen asleep, just before waking, during daytime sleep, or while in a state of drowsiness. People who experience nocturnal seizures may find it difficult to wake up or to stay awake. Although unaware of having had a seizure while asleep, they may arise with a headache, have temper tantrums, or other destructive behavior throughout the day.
Nocturnal seizures are very uncommon and their mechanisms poorly understood. There is evidence that sleep enhances epileptic discharges in the EEG, though their daytime recordings may appear to be normal. However, if a pattern of limiting seizures to the hours of slumber is maintained, the chance of them occurring during the daytime is greatly reduced.
Or he might benefit by a sleep study?
Sleep studies (Polysomnography) with expanded EEG aids can indicate the difference between seizures and parasomnias.
If being observed in a sleep lab, there is a decrease in rapid eye movement (REM) and an increase in the lighter stages of sleep, according to the article “Nocturnal Seizures,” by Carl W. Bazil, MD, PhD.
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Comment by Phylis Feiner Johnson — June 2, 2020 @ 9:54 AM
I have nocturnal seizures…I just stopped my last dose of Klonopin last nite it took me 14 months to wean off….it takes 1-3 weeks for my body to adjust …I wake up many times thru out the nite. I feel like a jumping bean but I feel like I can have a life now feel so much better my brain is waking up still have a long road. I am on gabapentin which is better than the klonopin I wake up more though.
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Comment by Sam — June 2, 2020 @ 9:58 AM
Have you considered supplementing with Melatonin? I take 10 MG at bedtime and it really helps me sleep.
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Comment by Phylis Feiner Johnson — June 2, 2020 @ 10:02 AM
I take 5 mg of Melatonin..I see a sleep specialist, I used to 10 mg he to,d me that my body will not process the 10 mg I wake up less groggy. I just got off Klonopin last nite need to call my doctor. I also take a muscle relaxer
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Comment by Sam — June 2, 2020 @ 10:05 AM
Sam, it sounds like you’re being very pro-active and are on the right track.
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Comment by Phylis Feiner Johnson — June 2, 2020 @ 10:07 AM
I think so I was sooo good was taking just .006 yet I feel it but not going thru withdrawals if I forgot my
Klonopin I would not sleep but I did last nite for 6 hours broken up I need 8 hours. I hate to say it but the isolation is what I needed to really concentrate on me 100% to deal with all underlying issues. My Faith is what is getting me thru ?..amazing! I finally feel like I have a future. It felt like for so many years I just had to get thru the day and the nite! I kept a diary and may possibly write a small book on my journey off Klonopin. It is very scar going thru withdrawals for so long and to not give up.
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Comment by Sam — June 2, 2020 @ 10:13 AM
I think a journal or even a small primer about your experiences with Klonopin could help many. I’d be happy to publish the link here.
Congratulations on your perseverance and your can-do attitude. Not all of us have your will and determination.
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Comment by Phylis Feiner Johnson — June 2, 2020 @ 10:48 AM
Phyllis, If you scroll up I am SC I could not remember my screen name when the alert came for this thread.
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Comment by Sam — June 2, 2020 @ 10:15 AM
The THINKING HERB, aka LOBELIA is a great herb that may in some seizure cases, could STOP the seizure or reduce the time you are in a seizure IF taken before you know a seizure is getting ready to start. It will make the glutamate activity relax more, when it is going wild & rapid in the brain, which I have had a seizure to where both sides of my brain was fired up, and the LOBELIA will come to my rescue to reverse or shorten the time a seizure is happening. herbpharm.com OR nhc.com you can get it and most of them are not totally alcohol free, which is to help the herb to get through the blood stream fast, making it work faster than what the AED ATIVAN does which makes you drowsy MORE when you take that than what LOBELIA has ever done for me over 35 years taking that. Plus LOBELIA can help in all that soreness & stiffness that most of us always seem to get when a TONIC CLONIC / GRAND MAL seizure happens.
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Comment by James D — August 19, 2022 @ 9:27 PM