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UPDATED: Thu, 04/24/2008 - 2:14am

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Theresia
Theresia

PMT / PMS and seizures

HI to the other women.

I would be very interested to know whether other women have increased risk of seizures around certain times of the menstrual cycle....and any ways that others try to manage this...

For me, I am much more likely to have a seizure in the week before I menstruate. This is partly because my sleep in poorer also at that time, and because I get more cranky, therefore more stressed etc.

I try to make sure that I don't put additional demands on myself at that time- just sleeping regularly, exercising and eating ok, as well as letting myself cry if I need to! My husband is fantastic and I can just let him know that I am 'off' and need a cry and he gives me a hug. he knows not to get too worried coz I will be ok :-) I have also found that taking fish oil tablets helps.

Just for info, I have temporal lobe epilepsy, with tonic clonic and little seizures, which I call "fuzzies" (buzzing in my ears, weird noises, feels like everyone is speaking another language). Obviously the area affected by my epilepsy is therefore associated with my language area. Have recently looked into surgery options but because of the location of my seizures, we are trying again with meds and lifestyle managements.

Look forward to hearing from others.

By Theresia at Thu, 04/24/2008 - 2:14am | 182 views | 21 comments

Recent Comments on this Discussion

 I suffered from frequent myoclonic breakthroughs during the 2 weeks prios to onset and for a few days after. Mind you I am 41, perimenopausal, and suffering from severe PMDD. I finally decided to have a hysterectomy...mainly due to the PMDD versus the seizures. I have one daughter and wasn't planning on having more. It was the best thing I ever did. I don't recommend it for everyone without serious consideration. I no longer have myoclonic breakthroughs because my hormones are at a consistent level all the time and the PMDD went with it. However, I more sensitive to seizure triggers....lack of sleep,  etc and have suffered from 4 grand mals in the past 2 months (before this I've only had 4 grand mals from age 5 until now ) probably due to lack of sleep related to a shoulder injury. That has been incredibly scarey but I seem to be responding well to the addition of lamictal. It's a bit early to tell and I'm doing everything I can to prevent them. Most people would think I'm crazy to say this but I would honestly still have the hysterectomy...my quality of life has greatly increased overall and I'm confident that my current condition will brought under control.

julesgian

Hi, I have absence and grand mal seizures. I began having absence seizures at age 11 and continued through adulthood not knowing/understanding what they were. I had a grand mal 7 years ago at the age of 32. I was put on Trileptal and Tegretol but still had several absence seizures a month. I started having issues with low blood sodium (rare side effect of Trileptal) so I was switched to Lamictal and Gabitril both caused horrible side effects including a grand mal seizure. I then decided to switch neuros and found out that Trileptal isn't even used to treat the type of seizures I had been diagnosed with in the first place! My new (current) neuro put me on 1000mg Keppra and pretty much immediately I had great seizure control for the first time in my life.

 All was going well for 2 years seizure-wise but I continued to have pmdd issues. I had decided to have a complete hysterectomy in order to relieve all of the hormonal issues I had had for so many years. I ended up having a grand mal for the first time in 2 years. My neuro gave me the ok to go ahead with my surgery and he increased my Keprra to 1500mg/day. My Keppra levels were checked and found to be 12...normal range is 5-30 but neuro said when it is on the low end it can fall off and lower seizure thresholds when a exposed to a trigger (stress, lack of sleep). I had them rechecked a month later and it was 29. I thought all was well.

 I started estrogen replacement therapy a couple of weeks after my surger in mid-May and have had to switch from a spray to a gel (both transdermal and not processed by the liver).

All was well until last week. I had another grand mal. I injured myself this time...smashed my face up on my desk. 911 was called and I was taken to the ER. They checked my Keppra levels and they were 13.8! Now I know why I had a seizure, but I have no idea why my levels were so low when just 2 months ago they were really good.

He increased my nightly dose by another 375 mg/night so I am taking 1875mg/day. I have to wait until the 19th to see my neuro.

Could the estrogen gel be causing absorption problems? Could my drinking 4 drinks in a 6 hour time period (took my Keppra within this 6 hour period) cause absorption issues?

 Thanks,

Kelly

 

KellyS

Yes Thats when I have mine mainly is during the cycle so my doctor gave me medication called diamox to take before I start monthly during and right after.   It is because our ostrogen goes all wacky lol An thats where the medication I was given has helped me not always cause I dont always start on same time.

As far as taking birth control my doctor got mad the obgyn doctor I had put me on them it almost killed me. Because it can lower the medication we are on even interact with epilepsy medications.

danies...

prior to my cycle i exp 1-3 complex partials, after my cycle, i may exp a 3 day moment ..usually my episodes occur same time of day and i get a warning... im guessing its all ormonal and possibly due to blood loss,,fortunately, i manage to work around my spells but at times find myself unable to..i dont drive due to my cycle and its effect on me..i also manage scool around it as well.  its not fun but adaptable. im looking at surgery to aid me in some control ...good luck in your readings and well being babzy

babzy

Women definitely have an increased risk of seizures before, during or after their cycle if they are having Catamenials. They must be 2-3 days before or after or anytime during. It can be whatever type of seizure you have. Catamenial refers to the timing of the seizure. You can do some research online, I did plenty when I was dealing with them. There are ways to treat them and get them under control ! You need an OB/GYN to work with your Neurologist. Sometimes you just need a birth control pill or some other hormonal medicine to control Catamenials. It took more than meds to control mine, but you have to try some meds to find out.

rhondadbe

Ibuprofen is not going to do a thing to help you control hormonal seizures. You need a good Neurologist and an OB/GYN to work together to help you out. Document your cycles and your seizures. Do some research onilne for Catamenials, take it with you and be sure you read up on it so you can talk about it with your doctors. The birth control pills can help and there are other things that can help too. 

rhondadbe

I always have my grand mal seizures a week before, during, or a week after my cycle. The reason because I have bad cramps and I am so irritable, so i am really stress ( my bod is stressed). I have had seizures for 10 to 11 years and it has always been that way. My doctor has given me nothing before but my doctor has given me some ibuprofen but it hasn't helped. Nothing helps because I have some serious cramps and always had.

writer33

Hi everyone,

I've got great news to spread.  For as long as I've had seizures they've been hormonally related.  

Estrogen excites, progesterone 'protects' is the way I think of it.  

I've seen that my seizures are most likely to occur on day 15-22 of my cycle. (first day of my period being day 1.)  I reported this time and again to the (female) neurologist I  used to see. She wouldn't listen to any of it.  My seizures were resistant to meds she reasoned, "because my head injury was so serious." She increased my dosages and added another medicine.

I finally have a neurologist who listens to me and did his own research.   He was just in from Johns Hopkins and I got lucky by catching him when he was on call. They've made him the Director since his arrival.  I DID get very lucky!

 told him (on the phone)  about my seizures and when they were likely to occur.  He listened, he was familiar with what I was talking about.  He was interested. I made an appointment with him.  He spent an hour with me and then did research.  He told me to give him four weeks. 

That was several months ago, maybe six. With some research he found that the progesterone supplement that I had had to beg for  prometrium, was not absorbed by my body.  The progesterone must be compounded specially. 

There are many compounding pharmacies but I order my compounded progesterone from Freedom Pharmacy in Massachusetts.  It might be Freedom fertility pharmacy I don't know. I'm decreasing the amount of meds I take.  I was on Lamictal, the other neurologist added Trileptal which I've never liked.  With the help of the compounded progesterone I'm down from 600 mg/day of Trileptal to 150 mg.  I'll be off it altogether soon.

 

I'm so happy to spread good news Ladies, go get some compounded progesterone lozenges.  They taste awful but they work!

 

Nancy B. 

 

 

 

Meskerkid

That sounds really interesting.  It sounds like what I would need I would like to get some more information on those compounded progesterone if possible.  I also get some kind of funny feelings inside my ear around my period, along with tingling down my left arm.  I have had brain surgery so I am hopeful that maybe these will go away in time.  I am taking Keppra, Topamax, and Zonegran.  I was wondering if I was to take this compouded progesterone would that affect anything with having a baby?  I am 27 and I am very eager to start thinking about that, because I know having a baby isnt so easy living with the big E.  Thats what concerns me the most, because I want to have a baby more then anything in the world, and a healthy one most importantly.  Well best of luck to you and so happy to hear that your meds are decreasing.  good for you!  Any info you could give me I would really appreciate it.  Thanks alot, mitsybitsy

mitsyb...

GreenGrapes008

I get this tingly feeling in my ear and arm too around my period too!  Its awful.  I take Zonegran, Keppra, Depakote (formerly on Topamax).  I take Diamox two weeks out of the month around my period for catamenial (sp?) seizures.  I find this pill helps.  I've never heard of compounded progesterone, but have also been taking Vitamin B's and they help with thinking.

Good luck to you.

greeng...

Hi Ladies. I am not a woman but a concerned Father of a 21year old daughter that has seen her seizure activity increase in the last 18 months. We have been the rounds of several neurologists and changing meds with increased dosages. I have spent several nights and multiple hours researching epilepsy,hormones, and also the link of foods to seizures. I would encourage all of you to consider going to www.dogtorj.com, www.neuroendocrinology.com, and www.raypeat.com. To summarize due to gluten, casein from from cow milk, soy and MSG we are bombarded with estrogen which creates or exacerbates the estrogen/progesterone imbalance that can trigger seizures. The dogtorj website is a vet that has stopped seizures in 100% of his animals by removing gluten and casein from their diets. We are having our daughter's hormones tested soon to check for imbalances and hope to clean that up and reduce her med level by addding hormone therapy. Ken

golfczar

Does anyone know any particular drugs or treatment to combat Catamenials?

I have temporal lobe epilepsy due to a benign brain tumor that has been removed a year ago and now my siezures seem to fit the description of catamenial epilepsy - monthly painful partial seizures where I feel like i'm in another world, see things and feel like everyone speaks a different language.

I am used to having the seizures (it's been 10 years, I'm 28) but I am on keppra and lamictal and that doesn't work, although my grand mal seizures have stopped. I am also trying out herbs and accupuncture. I'm also growing out my hair :)

Oi! This stuff keeps you busy!!!

alexis00

Hi

 I had PMS, and bad Menopause, fuzzies, weird noises, It is much better now that I am on HRT's. My headaches and weird noises started in my mid-30's. Worst headaches until recently were from my mid-30's to when I went on HRT's. Everything became better then. I found myself staying away from sage. I also took Siberian Ginseng for headaches, and went on a high fat diet, many fish. I still was a grumpy bear with PMS. My husband was great about it - when it really became bad he took me to see my doctor. Hormones can affect your E, just find out what relaxes you.

CG

CG

Hi theresa i had that same problem for a while why do u think we get them more often than when were not and by the way Im a new member and Im taking keppra 500mg twice a day and lamictal 200mg twice a day also thank you.

denisse

Sounds like it could be hormonal/Catamenial seizures. Usually they are real close to your cycle...like a couple of days before or after or during, but if you are consistent, might be the same thing. Try keeping track every month, there is info online about Catamenials, see what you think.

I've been there for several years. I know how crazy it can be.

rhondadbe

 

 

Hello, Oh I have always noticed increased seizure activity when it my time of the month. As a matter of fact that is when my first seizure happened.  Back when I was 13.

And Yes, the mood swings are horrible, as well as the headache I get. Unfortunately, mine can come the day before, during or on the last day. Lucky me! 

Recently though, I have noticed that if I have sex, it gets worse. What's up with that?

 It is making me crazy, and I am wondering if anybody has any answers. I try to avoid stress, and such, I guess I will just have to not fool around during that time. Because I am getting tired of being stuck on the couch, for a day or two, just to make certain I dont have a full blown seizure.

Anybody else have this problem?

felisa

I do have this same problem.  I have seizures before, during or after my period as well.

It is very frustruating and scary because you don't know when you are going to be having one.

 I am taking Lamictal and that wasnt working, so I suggested spoke to a gynocologist and asked them if they treat women with epilipsy and put them on hormones to regulate the seizures. The doctor explained that during your period your hormones are CRAZY up and down and that is what starts the seizures.  The progesterone and the estrogen need to be even.  The doctor said the birth control would do that.

They put me on Yazmin to even out my hormones, so far there has not been much difference. So last week I went to the doctor again and told him that I am still having seizures.  He put me on a higher dose of birth control, Femcon Fe.  Hopefully that works. It takes about 2 weeks to get into your blood.

 I have an appt to see a woman neurologist who works specifically with women and epilepsy.  Hopefully she can help more.  Plus she is a woman and could probably sympathize more with what is going on.

 Have you learned anything since you last wrote??

lldrec...

Haven't learnt anything official (i.e. from docs or neurologists) about this, but I have had to change my pill because of changed AED - and the pill has extra oestrogen in it- which from other comments on here doesn't sound promising! I will check it out some more. Might contact my ex-GP who was more receptive to the concept to start with.

Not really anything positive happening at the moment with the epilepsy- unfortunately it's all having a bigger impact on our lives, but we are, of course, looking into everything, and making other, more positive changes to our lives (e.g. less work, more 'play' wherever possible).

Hope everyone else is going well!

Theresia

Hopefully those birth control pills help you out. Sounds like your new Neurologist could be awesome ! If she specializes with women who have epilepsy I would think she's familiar with Catamenials and things to do to treat them.

Good Luck !

rhondadbe

Hi there, women any age can be affected that way. It can happen a few days before or after your cycle or during your cycle. It can happen to any woman, age does not matter. It happens to women who have never had epilepsy even if they have been pregnant. It's thanks to our hormones. It's called Catamenials and you can find info online. I was struggling with it when I was 40, that was 8 years ago now. It took a while to figure out how to take care of mine, some women can take care of theirs very easy, not all of them.

rhondadbe

Hi I also have seizure activity/migranes the week before my period or the week after. my first seizure was when I started going through puberty at age 11! Although for me, it seems that my periods have gotten more painfull in the past few yrs, but my seizures have gotten more under controll! how weird is that! I would rather have a emotional and painful period, than a seizure, thats for sure! I have only had one gran mal seizure in the past 3 yrs! I just have warnings and aura's .

rgch

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