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 3. 12 seizures in 4 days (1, 4, 4, 3). 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 (en.wikipedia.org/wiki/CYP3A4) which is reponsible for metabolising a lot of drugs, including Clonazepam. (ncbi.nlm.nih.gov/pmc/articl..., ncbi.nlm.nih.gov/pmc/articl....

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.)

[EpilepsyAction1 Partner Epilepsy Action]

Dear a820e13f

Thank you for sharing your experience. It sounds like you have had to do a lot of research yourself and it's understandable you're finding it difficult to make sense of all of this.

It may be difficult for other people on this platform to give you any definite answers, as the issues around your medical conditions and treatments are personal to you and sound quite complex.

We're not medically trained, but the patient information leaflet for Clonazepam explains that you may experience withdrawal symptoms if you stop taking it too quickly: Clonazepam Neuraxpharm 2 mg tablets - Patient Information Leaflet (PIL) - (emc) (medicines.org.uk). The NHS website also has some information around this, and lists seizures as possible symptoms of clonazepam withdrawal: Common questions about clonazepam - NHS (nhs.uk).

medicines.org.uk/emc/produc...

nhs.uk/medicines/clonazepam...

We don't have any epilepsy specific information around clonazepam withdrawal, so can't say for sure how reducing the dose under your neurologist's supervision might be affecting your seizures. If you haven't already, it would be a good idea to talk to them about your concerns for further advice around this.

You also mentioned about issues with your gut microbiome and diet which may be affecting your seizures. We are aware that that there have been a number of research papers in recent years, which have suggested there could be a link between gut health and epilepsy. One suggestion is that an imbalance in gut bacteria could cause other problems in the body, such as inflammation in the brain which could lead to someone developing epilepsy. But, from what we understand, research in this area is at an early stage and this potential effect has not been proven. More research is needed to understand whether gut health can affect seizures. Most people with epilepsy are just advised to follow general healthy eating advice, but again, it may be worth exploring this further with your medical team.

I hope this information helps and you're able to get some answers. But if we can be of any further help, please don't hesitate to get in touch with us at the Epilepsy Action helpline: epilepsy.org.uk/support-for...

Regards

Diane

Epilepsy Action

[a820e13f]

Hello,

Thanks for your answer; sorry for not replying sooner, i was buried by life and forgot...

When i started to have these seizure series in April, i did not started tapering Clonazepam yet, i only started that on the very end of October. The question was rather if Clonazepam can cause withdrawal symptoms (with seizures along them) even without withdrawal or could it interfere with CYP3A4 blocking vegetables and cause seizures.

My gut biome was destroyed in 2017, so that should not cause the seizure series if it did not do that until this April; i just explained, why i eat these vegetables in large portions.

However, since then, two other options emerged.

One is testosterone being too low, because i entered the "changing age", or something similar. I've took a lab test to measure my testosterone and it was within normal range and it was actually higher than it was in 2018. At least, total testosterone was higher; FTI was 1.6% lower; question is, which counts in this matter? Free testosteron? Bioactive/biologically active testosterone? Total?

The other is anemia. Since my gut has been wrecked, i ocassionally become anemic, but not significantly. (So, it should not cause it, since it is comes and goes since 2017 and my seizure series has begun in April.) Current values are:

Red Blood Cells: 4.25 T/L

Hemoglobin: 129 g/L

Hematocrit: 0.36 L/L

And it is not due iron deficiencym since my iron and iron-related values are in normal range:

Serum Fe: 21.6 umol/L

Transferrin: 2.5 g/L

Total Iron Binding Capacity: 63.25 umol/L

Does any of these two sound as a possible cause?

Thank you.