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  1. #1
    Registered User mosaiclife's Avatar
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    Default PCOS and Epilepsy

    I have PCOS and epilepsy, and I'm wondering if the two are related.

    According to an EEG with video monitoring, my seizures originate in the frontal lobe of my brain. They occur almost always when I'm asleep; I wake up hyperventilating and flailing around, and afterward I'm exhausted. I had my first seizure about 7 years ago, and it's been difficult to control the episodes with medication. At this point I'm on Lamictal and I've begun taking Keppra.

    I know that some women with PCOS suffer from seizures in the temporal lobe. I've read that seizures can be triggered by hormones, and my hormones have never been normal, so that makes sense. If PCOS and epilepsy are related, I was curious as to whether my nocturnal seizures might go away if I manage my PCOS symptoms carefully. I'm on Metformin and Spironolactone, and I've lost 20 lbs over the last 6 months due to diet and exercise. So far, no changes.

    Anyone have any insight?

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    Registered User carpathias's Avatar
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    I have Epilepsy and PCOS. I was diagnosed with Epilepsy when I was 17 but had only just had my first seizure. I went from age 17-27 without another, and then at age 27 until 33 had about 10 grand mal seizures. I now at almost 36 have been 2 years seizure free. Although I do have myoclonic jerks which can lead to the grand mal. I take lamictal and primidone for my seizures and I am about to start Metformin. I was told to go on it YEARS ago but was too scared. Now that I am no longer PRE diabetic and have diabetes - as of a few weeks ago - I have to take Met. Anyway, for years we have been trying to find a conclusion if the two are related. At 17 after my first seizure I started the signs of PCOS. I have all the traditional nags of pcos, hair loss, hirsutism, etc (although no acne) I also have psoriasis do to the multiple seizures in the years of 2000. I for one, DO beleive there is a corralation (sorry spelling lol) between the two. It just is either a huge coincidence that the onset of the two happened at the same time, or it's just bad luck. What came first, I do not know. My Endo has been trying to figure that out. I have a feeling the Epilepsy started my PCOS. But again, it could be the reverse - I do however, believe the two are somehow related.

    Hope that helps. Hugs...Ali

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    Registered User MommaChocoLatte's Avatar
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    This is very interesting. I also have Epilepsy. I have what my Dr. calls Idiopathic Epilepsy. Basically, there's no good reason for it. All of my scans and EEGs have always come back normal but yet if I am not properly medicated, I have seizures. Now this has me wondering if PCOS *is* the reason. My seizures started when I was 9 and starting puberty. My Ped. Neuro thought it was related to that and would go away when I finished changing but it never did.

    I wish I had seen this thread before my appt this morning, I could have asked her!

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    Registered User MommaChocoLatte's Avatar
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    Ok, so I did a quick search. You may have already seen this but it's pretty interesting info.

    (I can't post the link yet, I don't have enough posts yet lol. Google "PCOS & Epilepsy" the article is at epilepsy dot com)

    Is PCOS related to epilepsy?

    The percentage of women reported to have PCOS varies widely because different researchers have used different definitions of the syndrome and have studied different groups. Estimates range from as low as 3-4% to as high as 18-19% of all women.

    Studies of women with epilepsy have suggested that PCOS occurs in 13% to 25%, depending on the definition used and on characteristics such as the type of epilepsy and the kinds of seizure medicines used by the women studied. It does appear that PCOS occurs significantly more often in women with epilepsy than in others, especially among certain groups. Studies using much larger groups will be needed for doctors to find out the details of how PCOS is related to the many types of epilepsy and seizure medicines.

    One explanation for the connection between PCOS and epilepsy is that women whose seizures begin in the left temporal lobe may be more likely to have certain hormonal abnormalities that prevent the follicles in the ovary from maturing. This leads to anovulation, the collection of cysts, and the release of more male hormones—all the criteria for a diagnosis of PCOS.

    PCOS has another link to epilepsy: it may increase or worsen seizures. The hormonal abnormalities related to anovulation include a lack of progesterone, which the ovaries usually produce in the days after ovulation. Progesterone has antiseizure and mood-stabilizing properties. The ovaries of women with PCOS, on the other hand, continue to produce estrogen, which promotes seizures and anxiety.

    Is PCOS related to seizure medicines?

    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. Teenagers who take Depakote may be at the highest risk.

    A possible explanation for the effect of Depakote is that it is one of the few seizure medicines that are not "enzyme-inducing." Enzyme-inducing medications promote the liver's production of substances that lower blood levels of the male hormones involved in PCOS. In effect, enzyme-inducing seizure medicines like Tegretol/Carbatrol (carbamazepine) or Dilantin/Phenytek (phenytoin) treat PCOS but Depakote does not. Lamictal (lamotrigine) is another seizure medicine that has been found to reverse the features of PCOS.


    Depakote also promotes weight gain, which is associated with higher levels of insulin and of active male hormones, both factors linked to PCOS.
    ** I am on Depakote and have been since I was 9. It's been the only anti-convulsant that has completely controlled my seizures. My PCP has wanted me to switch to something like Keppra but I am honestly scared out of my mind. I don't want to stop taking something that I know works and start something new and hope I don't start seizing all the time. I have to be able to take care of my kids and I am about to start a full time job also.

  5. #5
    Registered User mosaiclife's Avatar
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    I'm glad to have gotten a couple of responses! Yeah, I wish there were more conclusive evidence regarding seizures and their relation to PCOS, but it seems like it will be a while since both epilepsy and PCOS still seem to be a bit of a mystery to doctors. I've read that hormones can trigger seizures, and if that's so, then it makes a lot of sense since my hormones have always been all kinds of messed up.

    By the way, I've had multiple MRIs (came out normal), a CT scan (came out normal), and multiple EEGs (most came out normal--I only got a diagnosis when I did a longterm EEG and sleep study). I've talked to my neurologist about how I have PCOS and suspect a connection, and how it's important to me to figure out if there is anything I can do since my husband and I want to start trying to have a baby in the fall, but she was more concerned with getting a definite diagnosis (which I got earlier this month). I'll update the thread if I get any information that might be helpful.

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    Registered User KamikazeKitten's Avatar
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    I'm glad this is posted here! I am being sent to a neurologist because i'm having issues with strange extremely painful stabbing headaches on my left side of my head and problems for the right side of my body with pain circulation and numbness. I'm starting to think I'm experiencing seizures and i'm really worried I have had this problem progess over the last 7 or 8 years and I didn't know a lot of the strange thing that happen to me were seizures. Lately I have had random obe experiences, I bite my tongue in my sleep and grind my teeth, my hubby says I make weird noises like im gasping for air or dying(it scares him), I get sudden panic attacks accompanied with the sensation that part of my brain feels tingly or complete gone like it shut down and I black out, my eyes get blured I have had a lot of trouble speaking and thinking as of late,I get weird stabbing pains in my stomach, I fall over at random but I don't convulse-I'm really worried :s. Does this sound like a seizure issue to you guys ?

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    Registered User HeathBar's Avatar
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    Default RE: Kamikaze

    Hi KamikazeKitten,
    Your issues definitely sound like seizures. I was diagnosed back in Feb w/ epilepsy (started having grand mals out of nowhere) and have been on a crash course ever since trying to find out what on earth is causing them. Check out the epilepsy foundation websites. Grand mals (convulsions) are most recognized (probably because they look the worst!) but seizures come in all different forms - some people just daze off, some people have "drop attacks" where they just hit the floor, some people have tingling feelings, hear funny sounds, or have limbs that jerk. Having bitten your tongue is also an indicator that doctors/paramedics look for after a seizure occurs. The doctor will more than likely order an EEG & MRI to figure out where it's stemming from and put you on an anti-seizure medication. From what I've found, Keppra & Lamictal are the most common at this point. For me, an epilepsy diagnosis was a tough pill to swallow, but it's gotten easier with time & the more I've learned about it. Best of luck to you with everything!

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    Registered User KamikazeKitten's Avatar
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    Quote Originally Posted by HeathBar View Post
    Hi KamikazeKitten,
    Your issues definitely sound like seizures. I was diagnosed back in Feb w/ epilepsy (started having grand mals out of nowhere) and have been on a crash course ever since trying to find out what on earth is causing them. Check out the epilepsy foundation websites. Grand mals (convulsions) are most recognized (probably because they look the worst!) but seizures come in all different forms - some people just daze off, some people have "drop attacks" where they just hit the floor, some people have tingling feelings, hear funny sounds, or have limbs that jerk. Having bitten your tongue is also an indicator that doctors/paramedics look for after a seizure occurs. The doctor will more than likely order an EEG & MRI to figure out where it's stemming from and put you on an anti-seizure medication. From what I've found, Keppra & Lamictal are the most common at this point. For me, an epilepsy diagnosis was a tough pill to swallow, but it's gotten easier with time & the more I've learned about it. Best of luck to you with everything!
    Thank you for your reply -really it sounds like seizures?? Oh no's I hope not can you get a varity of diffrent types of seizures or only one type like say only Grand mals? I hope I don't have that I have enough problems :s, I can't afford all these pills and diet changes :s.

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    Registered User ranae's Avatar
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    Hi KamikazeKitten- There is a variety of seizure types ranging from simple partial to the grand mal. Many people that have epilepsy have experienced more than one type. I have mostly complex partial seizures but have had grand mals as well when I don't keep up on my meds. I take 300 mg of Zonegran each night. The Epilepsy Foundation's website offers a lot of useful information about the different types of seizures and also offers a forum where people discuss different meds and experiences.

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    Registered User KBK's Avatar
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    After going to the ER for my 1st grand mal seizure a year ago, and learning that the feelings of deja vu I had had for a good 6 mos leading up to the 1st grand mal, I was diagnosed with epilepsy. I've had a lot of testing done in the last year, and found out days ago that I have PCOS. I'm relieved to see I'm not the only one who thinks this is related. Now to convince our doctors . I know one thing's for sure- I do not want to be on the 7 pills of Keppra daily (my current dosage) for the rest of my life. I was put on birth control pills at age 12 to regulate periods (I was having heavy bleeding lasting 2 weeks with only 2 weeks in between each period) I have been off and on birth control for the last 5 or so years and when I most recently went back on it, I started having partial seizures again. According to my neurologist, estrogen can promote seizures (in women with epilepsy) BUT I know speaking for myself- I'm much happier when on birth control as far as periods being regulated, acne reduced, excess hair growth reduced, sex drive and all those parts working at optimum ... so what's the happy medium? Any advice? Thanks

  12. #11
    Registered User mosaiclife's Avatar
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    Well, I definitely wouldn't go off the birth control. I'm off it now (ttc) and still have seizures. Keppra didn't work for me, and in fact, I think it may have made me depressed. Tegretol and lamictal are the only two that really worked for me. The birth control that worked best for me was Yaz. I think it may have helped me lose weight.

    Honestly, I have no clue how to get doctors to really look at the relation of PCOS and epilepsy. I've mentioned it at visits to multiple neurologists, but I think they're most interested in treating the problem.

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    3DS + 1DD = 1 CRAZY momma sugarbug's Avatar
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    I have epilepsy, but mine is injury induced. I'm also pregnant. I'm taking a leap of faith that all will be fine... scary times tho!
    DS#1 my Hidden Content 1998 (14)
    DS#2 my miracle 2004 (8)
    DS#3 my blessing adopted in 2006 (7)
    DD!!! my surprise & my last 2012

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    Registered User cherrycordial's Avatar
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    I was diagnosed with PCOS when I went in after having my first seizure at 17. I have complex partial seizures, which basically means I stare off into space for about 30 seconds and then I'm extremely tired afterward. The first one I had was much longer and I was driving. After years of going through bad doctors and pills that didn't work, I finally have a combination that seems to do well (Lamictal and Topamax). I always figured I was just the lucky girl who got to have PCOS and epilepsy.
    Melissa

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    3DS + 1DD = 1 CRAZY momma sugarbug's Avatar
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    Quote Originally Posted by obinGilchrist View Post
    I am honestly scared out of my mind.
    of what?
    DS#1 my Hidden Content 1998 (14)
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    DS#3 my blessing adopted in 2006 (7)
    DD!!! my surprise & my last 2012

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    Registered User Madame_A's Avatar
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    Default For those suffering from seizures and PCOS

    Ladies,

    I just found this discussion board and am enjoying reading all this information.

    I do not have seizures but do have/had PCOS. If any of you check back on this thread, I recommend buying this book: http://www.amazon.com/Candida-Cure-P...7249137&sr=8-1

    It has transformed my health and have been doing an anti-fungal herbal treatment for 9 months now. For the past 6+ months I have been having a consistent period, no pain, lost weight, hyperpigmentation almost gone, and the list continues. Reason I wanted to bring this up under this seizures thread is because in the list of symptoms of a candida infection- seizures are included; it is not a coincidence that both are occurring! In the book, you will find a quiz you can take that can evaluate your possibility of having a candida infection, along with a good list of symptoms. I've done my treatment directing myself, however, like everything it is helpful to find a naturopathic doctor to assist you.

    I've taken birth control and Metformin in the past years and truly regret it. They only made the condition worse. As women, it is important to understand how the "pill" works and what the excess, synthetic estrogen can do to our bodies.

    God Bless.

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