Catamenial seizures

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Hello, does anyone think that they may have catamenial seizures (hormone related). My daughters tonic clonic seizures (grand mal) have only happened when she is on her period. I have read information about treating these seizures with bioidentical progesterone. Any info will be appreciated.
 
First of all the type of catamenial epilepsy should be ascertained to have proper treatment. The frequency of seizures increases when estrogen increases than progesterone leading to Type 1 catamenial epilepsy (perimenstrually) and Type 2 catamenial epilepsy (preovulatory). When in the second half of the cycle progesterone level goes down then the Type 3 catamenial epilepsy (with anovulatory cycles) occurs. Herzog et al
Natural progesterones are better tolerated than synthetic agents.
Some (but not all) studies of women with epilepsy have found that PCOS is more common in those who have been taking Depakote (valproate) than in those taking some other seizure medicines. So if possible the change of medicine is helpful.
 
Another Forum

Dianeparente,

I suffered with catamenial seizures for many years. There is a Facebook group for catamenial epilepsy I found that has some super postings. Lots of advice, suggestions and stories. If you are on Facebook, you should check it out.

Carped
 
I've racked my brain out trying to find a common denominator to my 2 big seizures and all I came up with was they were right in the middle of my cycle, during ovulation. I'm fine during my periods, yet I know mine must be hormone-related too somehow.
 
Ovulation

Ovulation is when your estrogen levels are the highest in your entire cycle! It is highly likely. You can take your temperature to determine this.
 
What is the facebook group you have mentioned I never even thought of that? My seizures 95% happen on my period and 5% happen upon ovulation. of course when I have the occasional seizure anyway it only happens only every 4 months! Still frustrating anyway becasue it happens to be TC's/Gran mals! So no driving for me. Would love a more natural approach to this for sure. Docs have me on Keppra, Topamax, NuvaRing (for Birthcontrol/ hormones) they don't want me getting pregnant at the moment, and Lisinopril for BP as precautionartionary step for hypertension even though I don't have high blood pressure at the moment it is borderline. I am sure this is hormone related neuro is not sure reg doc is more open to possibitiites i am ready to seek other second opinion of another doc just to see what they may say but husbands job right now is iffy right now my insurance is not tied to his and this would be on my insurance any thoughts?

tina
 
Tina, I understand your frustration. When it comes to seizures, they can really difficult to get an answer. Did you have the MRI and EEG? Did it come up with any concrete possibilities? I can tell you with my experience to really make sure that you checking it all out. I have had no concrete answers my eeg came up fine (at least five) mri fine but have had three seizures over a year. So, the put me on Keppra and Lyrica. Have not had one since June but have alot of side effects with the medicine>So, just make sure you really need it before you take it.

I also had borderline high blood pressue in the doctors office but not at home..my doctor also tried to put me on the same medicine but I have not taken it. Do you get dizzy or lose your balance? Wondering if its related.

Wish you the best!
Chris
 
hi dianeparente, i think mine are hormone related but they only happen in my sleep i was put on keppra but the side affects are unreal, when does your daughter have her seizures night and day or jus day or just night?
 
My migraines for 30+ yrs were hormonally related, though it was discounted for years because they were not at the beginning of my period but rather exactly 2 days after it was over. I went on every med manufactured, and received some relief, but it always wore off over time. It wasn't until a doctor that approaches his therapies outside of the mainstream therapies suggested magnesium, I finally found relief. I have not had a migraine in 6 yrs.

My daughters seizures, tended to also be hormonal too. Not all, but I think that had to do with which medication she was taking at the time. Her very first one was on the day she started her period, and many others were similar. We went the bioidentical hormone therapy because she was tested and she wasn't producing this hormone. Her estrogen was dominant. She had at the age of 14 severe spider veins on the inside of her thighs. I was told that was "normal" for some women. I did personal research and found out it was a symptom of high estrogen. Estrogen excites the brain. Progesterone calms the brain. Once Rebecca began using the progesterone, the spider veins disappeared.

It wasn't however until we eliminated prescription drugs (these caused seizures for Rebecca) and made major changes in her nutrition, that she has began to get relief. She has recently not had a seizure in 9 months and eight months prior to the last one. Her blood sugar is wonky, and it is my research on insulin and how it effects hormones that has helped her to raise her seizure threshold. Making sure the liver is eliminating toxins, improving bowel movements etc that is healing her system from the inside out. I had no clue how her eczema could be related to all of it, how the sinus issues, the constant clearing of her throat, etc... they all were clues. However when treated individually they were just a nuisance. They have all cleared up as the body has been viewed as a unique system, not individual parts.
 
robin can hormone problems be hereditory? just my seizures tend to be around my periods my mam suffered with severe migraines and like you they coundt find what it was until they found it was hormonal and she had to have her womb removed since then she has never had a headache since, could this have anything to do with my seizures and them being hormonal? any advice would be appreciated thank you
 
That is a good question CC - I have yet to form an opinion on this. To me there might be a blood component. I personally don't buy in that the brain is wire identically to carry such symptoms from one family member to another. The odds of that are simply not there for me to believe it. Blood, nutrition (we tend to follow similar dietary choices within a family unit), allergies, ...
I am not sure the final answers are in on this subject. I decided not to use the theory in my approach. Though hormones are definitely connected to lowering the seizure threshold. I don't recommend anyone having their womb removed. Thankfully we have other options these days. (I do understand the need to try anything, remembering how desperate I was during my attacks which lasted 3-4 days)

The women in my family tend to all have migraines. I don't know how many are hormonally induced or not. Lately I have been working on one sister (1.5 yrs older) to add magnesium, however she to this date, refuses to give up her diet soda habit. So it makes it a moot point when she doesn't buy in that nutrition plays a roll. Magnesium is not a pill to treat a symptom. It is a necessary mineral that our cells need to function properly. Adding chemicals that are neurotoxic isn't helpful.

When one kind soul on this forum taught me that everyone on this planet has a seizure threshold, it opened my eyes to the possibilities. For whatever reason (or combination of reasons) a % of people have a lowered threshold. Some of these causes, we can do something about, others we can't. Yet some we can reduce. We will never get rid of stress, however we can work on ways to reduce it. Stress raises insulin levels. Certain foods raise insulin levels. We have control of what goes in our mouths. Insulin has a direct connection to hormonal production.

My approach is not right for everyone, however I have proof in my daughters improvement that it is working for her.
 
thanx robin, the doctor did actually say wen i first saw him it could be hormonal and mentioned hormone replacement therapy, it just made me think what you said in last post, my mam never suffered with seizures but severe headaches they came to the conclusion it was 2 do with her womb and shes neva had a headache since and its been bout 10 year now, it just made me think could it be hormonal with me and she has passed it on, its scary this am petrified if im being honest.
 
my seizures are only happening when im asleep roughly the same time every month this is what i dont understand.
 
If this were me, I would find ways to reduce the "jolt" to your system at that time. There are foods that are high in estrogen. You might consider avoiding them for a trial period. You can do a google search on this.

You can ask your doctor for a prescription for a bio-identical progesterone. Though I would recommend you do some personal reading on the subject so you understand why this is necessary or not.

I also would suggest finding ways to reduce your anxiety. This truly does cause a serge in hormonal production, and is not helpful when attempting to balance life. Remember knowledge is power. The more you know about it, the easier you will find it is to face what needs to be done to deal with it. Be honest with yourself about how nutrition can be playing a role in your symptoms, and learn what you need to do to be proactive.
 
i do eat a lot of junk food plus i worry about pretty much every solitary thing, i even worry when i go to sleep that im going to have a seizure. i am seeing my neuroligist soon so i will definatly mention all this. thank you for all your help and advice i really appreciate it, you have been more hellpful than my neuroligist. he didnt explain anything to me, i basically had to work it all out myself.
 
If I gave any advice... it would be to change your relationship with food.
Junk food... all of it... can cause neurological symptoms, one of which is anxiety. You simply are not giving your brain (body) the fuel it needs to function properly.

The bandaids the doctor gives you in the form of a drug, will wear out over time.
 
i thought all this in the beggining but i jus accepted i had epilepsy because the neuroligist said i had it but i want more tests done now.
 
Epilepsy isn't an "illness". It is a label that is put on you when you have more than two seizures. You can be proactive in ways to raise your seizure threshold so that you no longer have seizures. One of those ways is medication. There are many that simply do not want to explore the alternatives, which is their personal choice and certainly a fine one, if the med actually works.
 
I think its working its the side affrcts i cant deal with. There too much to handle. Im having just about every1 on the insert.
 
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