Clonazepam withdrawal and seizure frequency

[a820e13f]

Hello there,

I have temporal lobe epilepsy (becuase of hippocampal sclerosis in the right hippocampus) with focal seizures and for 22 years, i only had one or two seizures per month on average and the number of seizures were slowly, but surely decreasing. For instance, in 2017 i had 28 and last year i had only 14 seizures. But this year, from April, the number of seizures skyrocketed. Since the seizure-series appeared in April, i had 93 seizures and most of them happened in "clusters"; for around a week i have around 10 seizures and then they stop for a week or two.

Last year - in September and October - doctors prescribed Clonazepam and Escitalopram for me against insomnia. The insomnia is long gone by April, but i did not dare to put down the drugs immediately. I've put down the Escitalopram by the end of August, but nothing had changed. Now i am tapering down Clonazepam. Initially it was 0.5 mg / day and my neurologist suggested to decrease the dose by 0.125 mg per week. Today is the last day of the first week and on this week, the seizure frequency became insane. Until this week, the seizure-series had the average frequency of 1.4 seizures per day. This last one has 2.75. 11 seizures in 4 days (1, 4, 4, 2). Could this mean, that the culprit behind the seizure-series is Clonazepam? Can Clonazepam withdrawal cause this increase in the seizure frequency? I know i only started tapering off Clonazepam this week and i have these series since April, but one of my doctors said, that Clonazepam can cause withdrawal symptoms even without withdrawal. I could not confirm or refute that. Is it possible?
Also, there is another thing. Due to an antibiotics session years ago, my gut microbiome has been destroyed up to nearly 90%. A specialist suggested a lot of raw vegetables and fruits, for the fibers. I eat 300g of raw vegetables and fruits for years now and my guts improved a lot. However, sometimes i run out of them and have to stop eating them. Recently, i've accidentally noticed that when i stop eating them, the seizures come and when i restart eating them, the seizures go. So, i've compared my "fiber-log" to my seizure-log and it turned out, that the appearance of the seizure-series and the abrupt stopping of eating the vegetables/fruits was in synchron in almost all of the cases. (Yes, i never stopped eating them between September and April.) I've done some research and it turned out, that Celery and Dill (that i both consume a lot) inhibits an enzyme named CYP3A4 (http://en.wikipedia.org/wiki/CYP3A4) which is reponsible for metabolising a lot of drugs, including Clonazepam. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6321138/, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8158701/).
So, i am guessing, that while i ate the vegetables, Clonazepam had been accumulated in my body more than it was supposed to, due to the decreased levels of CYP3A4 and when i stopped eating the vegetables, then it started to decompose faster than it did before, because the "normalized" CYP3A4 levels.

Of course, the possibility of my hippocampal sclerosis getting worse has also emerged, so i went for an MRI...and the radiologist said, that comparing the images, the mild HS (suspicion) which was present on the MRI images from 2017 are gone now. Currently he could not see any difference between my left and right hippocampus, so if anything, my hippocampal sclerosis actually got better, not worse (this would explain the slow thinning out of the seizures over the years) and yet, suddenly my seizures became a lot worse.

Please, can someone make any sense out of this? I've excluded everything else than the Clonazepam and now that i started to taper it off, my seizures became even worse.
Is this just a coincidence or, Clonazepam really can do this? And if yes, how long it will, after i've put it down fully?

Any ideas are much appreciated.

Thanks in advance.

P.S.: I use no antiepileptics. I tried it in 2017, when i was diagnosed with epilepsy, but had to stop due to side effects. (Brain fog, which is unfortunately did not disappear after i had put Lamictal down.)

 

[Porkette]

Hi a820e13f,

It sounds like we have a little in common. I've had temporal lobe epilepsy for 51 yrs. and my right hippocampus shrunk
and became hard from so many yrs. of seizures that when I had brain surgery to reduce my seizures my surgeon removed
the right hippocampus and 75% of my right temporal lobe, that reduced my seizures from an average of 300 sz. a yr.
down to around 114 seizures a yr. I was once on the same med that you are taking and it increased my seizures like
crazy so I didn't stay on it that long.

I've seen a pattern with my seizures where I have more in the fall and winter compared to the spring and summer and
my Epileptologist told me that I was having seasonal seizures which means when there's less serotonin outside I will have
more seizures so I have been told to sit near bright light and that helps me as crazy at it may seem.

I have no idea how old you are but I do know that when a person has temporal lobe epilepsy it's been known for a persons
seizures to either increase or decrease when they go through their change in life. One thing that has helped me more than
anything else is the medical marijuana. My Epileptologist told me to start using it after he did a DNA test on me and found
out I was drug resistant. Also I take 2 Tablespoons of apple cider vinegar with mother in it and I am really surprised how the
vinegar has lowered my seizures to the lowest in my life. My Dr. told me it either has to be the protein in the vinegar or the
enyzme in it that has reduced the seizures.

I wish you the best of luck and you may want to ask your Dr. to do a DNA test on you to find the best treatment.

May God Bless You,

Sue

 

[a820e13f]

Hello Sue,

The seasonal part could be true, except i used to have more seizures at summer and less at the other seasons (i do not tolerate hot weather well); but not this much. The two worst months were two Julys, with 7-7 seizures, but those were scattered along the two months and did not happen in two days.

I am 38 and my seizures were decreasing until this April. I could imagine a reversal due to aging, but that should be slow, while this happened in an eyeblink. Literally. From nowhere, series of seizures. I think this is rather triggered by something external, than an internal change.

I cannot use marijuana, i am a programmer and i need to remain sharp. I wanted to try grape seed extract, but that is also colliding with Clonazepam...

Can you please tell me more about this DNA test? I asked for an appointment at an epilepsy ambulance in October and they gave me an appointment for next March, so i'll have enough time to do some research on this too.

Also, can you please tell me, how did you cope with the post-ictal mental status? It is horrible. The seizures are bad, but they ends after a minute or two and that's it, but the post-ictal status remains for days or weeks and it is terrible. It feels like the shadow of a seizure: same dark deja vu, but without the malaise, but keeps going on. It feels like you can have another seizure in the next moment. I never felt this before April and i have epilepsy since 2001 (it was just not diagnosed).

 

[Porkette]

Hi a820313f,

When I was your age that's when the seizures started to increase like crazy and it was all due to hormones changing as
I went through my change. I was having a lot more seizures but one thing I was told to do is to eat peanuts or almonds
because both the peanut and almonds are high in fat and the oil in them helped me a lot to reduce my seizures.

I was fine with my post-ictal mental status every time after I would come out of a seizure I would feel confused for a few
seconds and not remember what I was doing until I was more with it after the seizure was over maybe about 1-2 min. after
the seizure and everything was fine except I felt tired and I would often have a headache after the seizure but I have learned
that if I lay down and sleep after the seizure I feel a lot worse and more exhausted.

What you may want to do is the cold water therapy treatment and that is put a cold washcloth on your face and the back
of your neck 3 times a day at the same time and anytime you start to feel a seizure start up. By doing this you are calming
down the neurons in your brain and that in turn will stop the seizure if you do it in time.

In regards to a DNA test, if you ask your Dr. to do one don't be surprised if the Dr. tells you no and that's because they like
to push the seizure meds to make money but by law you have every legal right to request the test and when they do the test
all they will do is take a few tubes of blood from you and then get some salvia from the inside of your mouth. All of that will
go to the lab where they will be able to see the amount of enzymes in your liver along with your body chemistry and then by
looking at the chemistry and the enzymes they will be able to match you up to the best seizure med with the least side effect
or it will show if you are drug resistant. Often if a person has tried over 5-6 different seizure meds and nothing has helped
them that usually means they are drug resistant.

You should call your Dr. immediately and see if you can get in sooner especially since you are having an increase in your seizures.
I wish you the best of luck and May God Bless You,

Sue

 

[a820e13f]

Hello Sue,

Thanks for the details.

That sounds bad, that it could be a hormonal change, but is it the same with women and men? And if it is a hormonal change, then until now, why did the seizures decrease constantly and why did my hippocampal sclerosis became so small, that the MRI cannot even see it? And why did these seizure series (mostly) aligned with either a change in the Clonazepam dosaging or the abrupt stopping of eating those vegetables which can cause Clonazepam accumulating in the body? When you went through this period of your life, did your seizures appear in "clusters" (as in several ones in some days and then nothing for a week or two) and did this change happened literally from one moment to another? Because i do not have an increase in seizures, i had an increase in seizures: from one seizure per one or two week to a series of seizures per one or two week. From one moment to another.
So, i hope it is not a hormonal one, or i am in very deep trouble. Was it similar with you, or completely different?

From your description, it seems that you have complex partial seizures, while i have simplex partial ones. Maybe that's why your post-ictal periods are different and the reason you can tolerate them better, than i can tolerate my own post-ictal periods. Or, maybe we misunderstood each other. Did you talked about the direct aftermath of the seizures? Because I did not. (I am devastated for some minutes and that's it.) But the psychological result of several seizures, which appears hours or even days later and keeps for days or even weeks. That is what really terrible.

The problem with the cold water therapy, that my seizures are striking very fast. In one moment, nothing, next, seizure. I don't have the time to make and use a washcloth. Well, actually since these series started in April, i can sense some of them coming, but that is still only one or two seconds before the seizure.
Still, thank you for this tip, i'll try if it can reduce the effect of a seizure during the seizure. If i manage to reach a sink during the seizure, that's it; since i am conscious during seizures, just feel very bad and weak. Never say never...

I know the doctors like to prescibe meds, instead of examining people...but here in Hungary, i have no right to demand anything from the doctor. I have the right to visit the doctor and either accept and do what the doctor ordered, or refuse and don't do it. Also, here in the public healthcare, doctors have very limited resources and budget, so even if a doctor wants to help you, it can happen that the doctor will be helpless, because the lack of examination possibilites or the lack of money for proper treatment.
So, can you please tell me the name of this test? Maybe i can order it via the internet, from some W.E. or N.A. country. Or from a local one which resells it.

As for asking for a sooner appointment, it is impossible. In Hungary, in the public healthcare, it is regular to have to wait several months for your appointment. One can go for private healthcare, and get an appointment in a few days...and then get the same treatment than in the public healthcare, except for a lot of money. And i have no money for that. (And when i had, the doctor set me on Lamictal which sent me into my longest illness in my life, from which i still did not recovered. Or maybe it was not Lamictal, but the somatic effect the doctor put on me.)

Thank you for your help and good wishes - same to you.

 

[Porkette]

Hi a820e13f,

I have absence, complex partial and simple partial seizures. Personally I think the hormonal change may be harder on a
woman than a man because a woman will go through her monthly cycle causing the hormones to change while a man doesn't
have to deal with that but he still goes through hormonal change. My Epileptologist told me that when a person has temporal lobe
epilepsy the seizures will either increase or decrease when they go through their change in life. What I want you to start doing it get
a calendar and write down what time you have a seizure and the type of seizure it is. Also take note if there's a low pressure in the weather
because that can sometimes cause a person to have a seizure. This happens because the air gets heavy when there's a low pressure and
in turn that affects a persons hormones. The reason why your hippocampus has become smaller is because you may have had a lot of seizures
like me and each time the seizure happens over time it will shrink and harden the hippocampus. That's why my neurosurgeon removed mine
it was no good anymore do to 51 yrs. of seizures. Take my word I've had clusters of seizures for many yrs. of my life I would have at least
1-2 days a month where I would average 4-8 seizures each day and nothing helped me until I had surgery and the Dr. removed part of the
right temporal lobe of my brain where the scar tissue was.
Do you know what area of your brain is triggering your seizures? If it's on the right temporal lobe this could be causing a lot of emotion
for you and in turn that's why you are feeling devasted and the feeling the seizures are lasting longer. You may want to see if you can have
an e.e.g or MRI done. It's sad to hear that where you live they can't do all the testing and give you the help you need. As far as the cold
water therapy you have to do it everyday no matter what and do it 3 times a day it doesn't matter if you are having a seizure or not by
putting the cold water on your face and neck that will calm the neurons down and help stop any seizures that may possibly start up.
As I mentioned the name of the test is called DNA test or testing. You can even buy them here in the stores and do them but it's better
to have them done in a lab where they can get the detailed information for you. Just tell your Dr. you want a DNA test done and the Dr.
will know what I'm talking about. Just like you I was on lamictal but I broke out with a rash after being on the drug for 4 days and take my
word if you find lamictal didn't work then tegretol nor trileptal will work for you either because they are all very similar. I wish you the best
of luck and May God Bless You!

Sue

 

[a820e13f]

Hello Sue,

Do you know any tests which can tell me if i am going through a hormonal change? I did not experience anything unusual since April, except the seizure series.

I already have a calendar in which i record my "deja vu" events, since 2016 december. (It is called "deja vu", because that is what i feel and in 2016 december i was not yet diagnosed, i just started to record them, because i thought they might be related to my psychological problems. Well...they are.) I did not register the atmospheric pressure until now, because i did not have any device to measure it. (Recently i've got one, just forgot to do...) Thanks for the tip and the info, i did not know, that the lower pressure can affect hormones. (I just had a seizure 20 minute ago; the pressure was 1001 mb or hPa, which is not that low, i think.)

You've misunderstood me: not my hippocampus became small, but the sclerosis of it. In 2017, the MRI shown (suspiciously) sclerosis in my right hippocampus. Last month i've had another MRI and my right hippocampus was no different from my left one. No sign of sclerosis, or shrinkage. So my hippocampus has actually grown back. And still, i have these seizure clusters, which i've never had. I can imagine that the sclerosis is actually still there, just became very small (this might be the cause, that last year i had only 14 seizures all year), but then why these series came? The only thing which remains as an explanation (beside the hormonal change) is Clonazepam withdrawal.
I do not know how much seizure counts as a lot, but you've said you've had 300 seizures per year. I had around 20 per year and it was decreasing until this April. Since then, i had over 90.
I would go for a surgery, but currently there is nothing to operate, according to the MRI. In theory i still have HS-caused TLE, but MRI contradicts.

Yes, my right temporal lobe is affected (it is or was hippocampal sclerosis), but my seizures are still only dozens of seconds or 1-2 minutes long. It is not them what are lasts for days or weeks, but the post-ictal phase.

Okay, thank you, i will put a cold washcloth on my face and neck three times per day. How long it should be there?

I do now know if Lamictal would work for me, because it did not have enough time: i only took it for a week, because i got a terrible brain fog. I don't know if it was the Lamictal, but it really does not matter anyway: i do not want to take any more brain-destroying drugs...

Thanks for your answers, i wish the best to you too.

 

[Porkette]

Hi a820e13f,

To find out if you are going through hormonal change just ask your Dr. to do a blood test t check your hormone balance
and this test will show what's going on with the hormones and if they are changing. I don't know what type of seizures you
have but when you go from 20 a yr. up to 90 a yr. something is going on. Maybe your drug level is to low and depending on
how long you have been taking your seizure med sometimes the body gets used to it and no longer works, that happened to
me yrs. ago after taking Depakene (valproic acid) for over 15 yrs. my body just got used to the drug and it no longer stopped
my seizures.

You may want to start taking vitamin B12 1000 mcg. once a day B12 is a vitamin and it helps calm the nervous system I have
been taking it for yrs. and I can see how it has helped me out. Also be sure to cut back on the carbs and starch foods because
they turn into sugar and in turn that can trigger seizures for some people that's why I went on the ketogenic diet and it worked
great reducing my seizures and I lost 70 lbs. in 4 months so I had to stop the diet.

If you want to have surgery you need to have a PET scan, MRI, CT scan, and e.e.g. and wada test done then you have to see
a neuropsychologist who will do tests on you to find out what area of the brain you are using for your speech and memory.
I had to have all of this done before I could have my surgery. The Drs. could pinpoint the exact location where the seizures
were starting up but I had to be awake during the surgery, today they have same day surgery which is gamma knife surgery
and they just use high frequency radio waves to wipe out any damage in the brain and then you go home the same day unless
you received to much radiation. I wish you the best of luck and May God Bless You!

Sue

 

[a820e13f]

I do not have a Dr right now. I've been seriously disappointed in the last one in 2017 and did not get a new one since. I have an appointment to a new in next March. Can you please tell me what hormones to check?
My drug level cannot be low, i do not take any antiepileptics. I never did, except for a week of Lamictal. So that cannot be the cause. Unless we count Clonazepam; it's withdrawal can cause seizures. But i only started to put it down a week ago and i have these series since April. Of course, if it really "collided" with celery and dill, then it is explained...

I already take B vitamins, not that much what you've said, but i think it's not the cause.
I know ketogenic diet works, but i cannot do that: antibiotics and PPI-s destroyed my microbiome and i've already lost 30 kg (66 lbs). I cannot risk losing more weight. That is why i cannot eat less carbs (i actually only eat some rice). But i've been searching recently and it seems, that you can achieve ketosis via keton-salts and keton-esters...but both can be dangerous. The latter ones more, but they are more effective.

I've already had an MRI and i've been at the neuropsychologist. MRI shown hippocampal sclerosis in 2017, but shown nothing now. The neuropsychologist said that because of extreme anxiety levels, amygdalar or insular areas are affected, the hippocampus functions are intact, which is very surprising, but he tested it. But considering that he also wrote that my memory is above average and - according to the MRI - the sclerosis in the hippocampus was very mild, this might have deceived him to think that i have an intact hippocampus. Or i don't know.

I am not sure about the gamma knife version of surgery. Statistics has shown, that hippocampal surgery done via usual methods results in 90+% seizure freeness, while the gamma knife version results in ~50%.
But still, right now, there is nothing to operate. The sclerosis on my hippocampus has been disappeared. It may be just so small, that the MRI cannot see it, but still, the doctors cannot operate what they do not see.

 

[Porkette]

Hi a829e13f,

You asked what hormones change in a person for men it's testorone and cortisol. For women it's estrogen and progesterone.
These are the main horomones that can sometimes cause a persons seizure to either increase or decrease when they go through
their change in life. My advice to you is to start seeing an Epileptologst these Drs. specialize in epilepsy and are also neurologist
so they know a lot more about epilepsy and how to treat it and they can find the cause of the seizures. Years ago they thought
my seizures were coming from the right temporal lobe even after they did all the testing before surgery but when they cut into me
they found damage so deep in my brain that not a single test would show anything. I hope I'm wrong but that could be what's going
on with you. I wish you the best of luck and May God Bless You!

Sue

 

[a820e13f]

Hello Sue,

Thanks for the tips and the wishes, i wish the best to you too. I will see an epileptologist in March, but i'm afraid that this one too, will not care about me and just will try to feed me with drugs... But at least - thanks to you - now i have some countermeasures, such as the examination for the hormones and the drug resistancy DNA test. Thanks again for that. You gave me much more useful information in a few forum posts, than the doctors did in years...

I have one question left: the washcloth; how long i should put it on my face/neck?

 

[Porkette]

Hi a820e13f,

I would keep the washcloth on my face and neck until it started to cool down and then I would remove it and if
I felt I was going to have a seizure then I would putting it back on my face a second time after I got cold water back
on it.

 

[a820e13f]

Hello Sue,

Okay, thanks, i'll try it.

About the hormones again: what levels of testosterone and cortisol could cause seizures? Low or high?

 

[Porkette]

Hi a820e13f,

If the testoterone level is low that can trigger seizures and when the cortisol level is high that in turn causes stress
which will trigger seizures for some people. Wishing you the best of luck and May God Bless You!

Sue

 

[a820e13f]

Hello Sue,

Thank you, then if it is a hormonal change, low testosterone must be the culprit, as i had high cortisol all in my life (that was the cause behind my HS in the first place).

Thank you again for your patience and knowledge, i wish the best to you too.

 

[Bernard]

... I will see an epileptologist in March, but i'm afraid that this one too, will not care about me and just will try to feed me with drugs...

Drug treatment is going to be their first line remedy (that doesn't mean they don't care about you). There are alternatives you can explore on your own including diets and CBT (better with professional help, but there are books you can read to experiment with it). More info here:

CAM Chart | Coping With Epilepsy Forums

 

[a820e13f]

Thank you! I checked the options.

I've already tried CBT several times, but it did not worked.
As for diets, with my wrecked guts...
I'd go under surgery, but there is nothing to operate right now... (Also, no money for a private surgeon and doctors in public healthcare would not send me for a surgery; they want to sell drugs.)
Isn't neurofeedback a hoax?
The rest does not seem to be effective.

Currently i just hope, that Clonazepam is the cause. One week has left from my tapering. (And then, some weeks of withdrawal symptoms...)
Next tuesday i'll have a testosterone/cortisol level test to see, if they can be the cause, but according to this paper:

Clonazepam-related sexual dysfunction in male veterans with PTSD - PubMed

Medication-induced sexual dysfunction can significantly interfere with patients' quality of life and lead to poor compliance. This retrospective study examined the records of 100 male veterans with post-traumatic stress disorder (PTSD) selected in alphabetical order from an active treatment file...

pubmed.ncbi.nlm.nih.gov

Clonazepam seems to be able to cause low testosterone (they did not mention it directly). So a repeat of the test may be needed a few weeks later. I had a testosterone measurement in 2018, so i can compare.

 

[a820e13f]

A thought occurred in my mind. I have recurring anemia (probably) due to my poor gut health. I've read that anemia can cause seizures. But can it cause seizure-series? It's not a serious anemia, it comes and goes. Currently it is:

Red Blood Cells: 4.25 T/L
Hemoglobin: 129 g/L
Hematocrit: 0.36 L/L

which is only slightly low. And it is not due iron:

Serum Fe: 21.6 umol/L
Transferrin: 2.5 g/L
Total Iron Binding Capacity: 63.25 umol/L

Which is all ok.

So, i guess the answer is no, but just to be safe, i ask: could this be behind my seizure series? Maybe if it is prolonged? I had blood tests last autumn, when it was OK, so maybe it is the same since April, but i don't know.

 

[Bernard]

...
Isn't neurofeedback a hoax?
...

Not in my wife's experience.

 

[a820e13f]

I've got my hormone results, but it is not too clear. What is clear, that my total testosterone and SHBG levels are higher, than they were in 2018 (13.2 nmol/L vs. 16.98 nmol/L and 32.3 nmol/L vs. 43.2 nmol/L).

However, on my 2018, there is an entry called Free Testosterone Index which was 40.9%. I've checked what it is and it is calculated by dividing total testosterone with SHBG and with rounding (40.8669%) it fits. On my current paper, this entry is missing. There are four other entries:
- Free testosterone: 0.26 nmol/L
- Free testosterone %: 1.56%
- Biologically active testosterone: 6.53 nmol/L
- Biologically active testosterone: 38.5%
(All my results were and are within normal range.)

If divide my current total testosterone with my current SHBG, then i get 39.3056%, which means that my current FTI is dropped by 1.6% compared to 2018.

What is the deciding result? If total testosterone, then the hormones are ruled out. (Cortisol is also within normal range; it is higher, than it was in 2017 and 2019, but still normal...and i had a very stressful life, so i guess, i've had even higher levels than my current one. Also, it could be higher, because those levels were measured before 8 AM and this one was measured after 9 AM.)
If FTI decides, then is a 1.6% fall per 5 years enough to induce seizure series like these? I've read, that after 30, the testosterone levels fall 1% by each year, though i don't know which one matters in that question either.