Progesterone therapy to treat epilepsy

I'd like to write an in-depth post about the progesterone therapy I am using to treat my seizures. Why am I on it? How did I find it? How is it working? At the current rate it's not happening though, because something else is always more important and in the way: kids, school, time.

But to do a brief summary to someone who might be interested:

I started progesterone therapy 4 months ago when I talked my neurologist into trialling a protocol set up by a clinical trial in https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369508/ . I have catamenial epilepsy with a C1 pattern (ie, I tend to get seizures within +/- 3 days of my menstruation starting) and that's the important part: from what I understand, progesterone therapy has the best chance of working only in the C1 pattern. Reason being, C1 pattern can be driven by progesterone withdrawal and, so, supplementing with progesterone can help keep levels at a point where the seizures are managed.

The doses I am using are different from the clinical trial. The clinical trial set the dosage a 200 mg taken 3 times a day on days 14–28 of the menstrual cycle (so a total of 600 mg a day). My dosage is instead:

* days 19-20 I take 100 mg at night
* days 21-30 I take 100 mg midmorning and 100 mg at night (total of 200 mg a day)
* days 31-32 I take 100 mg at night


I changed the dosages because the clinical trial protocol wasn't working for me for several reasons:

* I have somewhat irregular, longer-than-28-day cycles, so starting progesterone on day 14 was too early for me. It made me prone to seizures and gave me side effects because it probably over-loaded my body with progesterone at a time when my body actually had enough progesterone already. My ovulation is likely later in the cycle, around days 18-19, so we needed to push the progesterone therapy to after the ovulation has already occurred, ie day 19.

* 600 mg a day is too high for me. It gives me intense dizziness to a point where I act like I am high on drugs, giggly and stumbling. We reduced the dosage to 200 mg a day because we aim to find a dosage that is as low as reasonably possible, but high enough to still treat the seizures. 200 mg seems to be working at the moment.

* I don't take progesterone early in the morning because it gives me dizziness: my natural progesterone is highest in the morning, so I take my morning pill at around 11 am when the natural progesterone has started to go down already.

* I start with lower dosage on days 19-20 because I don't seem to need the full 200 mg yet at that point - it gives me dizziness if I take a pill even during mid-morning.

* I end with lower dosage on days 31-32 to ease into menstruation, because coming off it cold-turkey gives me cramps otherwise: it's like my uterus decides, oh, the progesterone has gone away now, has it? Cool! LET'S GO!!!

***

At the current rate, it seems to be working well. I do not get any side effects at night (which suggests that my natural progesterone is low enough at night). I only get minor "aura" type side effects mid-morning on days 19-24 so we may delay the morning pill even further into the cycle.

Most importantly: I have been on it for four months now, and I haven't had seizures. I feel the "aura" of being prone to seizures on days 30-33, but I've never crossed over into an actual seizure so far. We'll keep going, seeing how I go, finetuning the dosage and if it keeps working, I'll just keep taking it.

For the moment it looks like sometime after the birth of The Kid my natural progesterone levels started dropping prematurely and because my brain is for some reason prone to epilepsy, I started getting vague seizures at nighttime every 3-6 weeks. For several years we didn't even know what those things were - I used to call them "waves" - and it's not until I started having full-on seizures that we finally got the answer, epilepsy.

Now the progestrone levels are continuing to drop, so that's why the coping mechanisms I found initially (hydration and LCHF food) started becoming less effective until, being on supplemental progesterone, I seem to be back in control of it again. It also seems to link in with what looks like a systemic endocrine imbalance of my body: autoimmune thyroid, low thyroid hormones, insulin resistance, PCOS, low iron. That, basically, my body doesn't do hormones in the way "normal" women do hormones :)

Chances are, as I get older my progesterone levels are going to continue dropping, so I am going to keep upping my dosages but if it keeps on working, I am happy.

Because progesterone is not recognised as a way of treating epilepsy, then progesterone is not funded and I am paying the full market price and need to keep having a neurologist's clearance to have access to progesterone through a prescription. However! At around 70$ a month it's doable, so we're okay.

And PS: I take bio-identical progesterone.

Phew! Okay, off to school again :)

7 comments:

  1. I have also low progesterone level (I have had it low all my life). For a while I took Duphaston, but then I stopped because my migraines became even worse. If it's okay to ask, which kind of bio-identical progesterone are you taking?

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    1. The tradename for the progesterone I am taking is Utrogestan in 100 mg capsules.

      The "bio-identical" part simply means that it's not a synthetic progestin (which has a slightly different chemical structure). Bio-identical progesterone probably comes in different tradenames and dosages depending on the country, but the one I am using in New Zealand is Utrogestan.

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    2. Just looked up Duphaston on google: it's a synthetic progestin. Looks like headaches are listed as a common side effect from it.

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    3. Duphastonil üldse jube palju kõrvaltoimeid - see ajas ühelt iiveldama ja meeleolu nii hulluks, et ma ei tundnud ennast àra. Mul diagnoositi II faasi puudulikus ehk progesterooni puudulikkus, luteaalfaas jààb veidi lühikeseks et rasestuda. Aga olen uurinud, et seda peaks saama ka toitumisega mõjutada ehk siis pmst paleotoitumisega.

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    4. To the anonymous commenter: I don't know what food exactly you mean by "paleo", but if this food is low on carbs then, yes, it would help because it would reduce water retention.

      Having said that: it depends on what levels, exactly, the progesterone is at. If it's just a mild deficiency then, yes, low carb intake will help (as will exercise, sufficient sleep and reduced stress). However if the progesterone is really low then there's a limit to what food can do.

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  2. Thanks :)
    I looked at the molecular formulas of natural progesteron (C21H30O2) and bio-identical progesterone like Utrogestan (also C21H30O2) and then Duphaston (C21H28O2) which formula is different. I wonder why they prescribe the synthetic version here in Estonia and not the bio-identical..
    I try to ask about it from my doctor.

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  3. I've just sent off a saliva sample to test my progesterone and estrogen levels, suspecting I'll be put on bio identical progesterone and estrogen as a result. I don't have epilepsy, but a number of other symptoms pointing to estrogen dominance and currently being on estrogen only after losing my ovaries it's likely to be an even greater imbalance.
    I'm glad the therapy is working for you; hormones can be a sod to deal with.

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