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10-03-2006, 09:44 PM | #1 | |||
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Senior Member
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Warning: This post will discuss my periods, feel free to flee if this subject offends or grosses you out!
--- Giving people time to run... --- I was wondering if any of you ladies or if any men who know of women who have seizures have requested a hysterectomy due to catamenial seizures (epilepsy). I've only recently started to experience these over the past several months, and while some people find they only have more frequent seizures - I have extremely painful ones the day before my period. They get worse every month. I made a list, similar to one you'd make for all of the reasons you love your partner - except this is the opposite. It is like: "The ten things I hate about my ovaries". I am a tough girl, and these turn me into a huge wuss. I find myself in the fetal position wondering if I am going to die or not, and I honestly cannot deal with these, and god forbid they get worse - there's no way I can handle it. Do any of you have these? What are yours like? Do yours hurt or do I just have bad luck? Also, did you happen to ask to have a hysterectomy due to these and did they allow it? I can't have children anymore, although I am only 29. I have never had a regular cycle, sometimes I have two per month sometimes I just have one lasting 7-10 days. Regardless, they all hurt and I was dealing with that just fine up until the seizures came with them. I have my limits, and these are bad enough I am stressing out two weeks before I assume I will start (it could be 1-3 weeks, again - it's not regular). I am afraid of my period now, I don't want it to come. Has anyone found a treatment for this? My seizure meds do nothing for me, they increased me by 1,000 mgs trying to calm these 'period seizures' but it's not helping. I posted in detail how the seizures feel in the post I made here about "My Story" if you're curious. I hate to be such a baby, but I keep thinking about them and I am now paranoid and scared to death of my own cycle. Do you think if I ask them to take out whatever produces these vile horomones they will laugh me out the door? Sorry for so many questions, I'm a spaz (take note of my avatar!). Thanks in advance for any help, and again - sorry for bringing up my period, I know some people hate to hear about that. Hugs, Ellie |
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10-04-2006, 02:15 AM | #2 | ||
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Junior Member
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Hi ellie Couple of thoughts.
I read on your other story that you are on depakote. I had a bad reaction with depakote (here it is called epilim [sodium valproate]) after a period of time; it affected my hormone levels and sent me out of whack. It is a rare side effect and not commonly listed with this drug. Might be something to check up with your doc. My szs do coincide with my periods, and I asked my neuro about this. he said fiddling with hormones may actually worsen szs, which gels with what you've come across too, so you may want to do more research into this. I have had good results with magnesium supplements along with switching to Topamax. not total control, but better, not as bad and longer in between szs. It has been some months since a 'bad' one, and only minor blips on the radar when I do get one (mine are only SPs). Consider seeing a gyno to make sure nothing else is happening in that dept, but someone who is used to working with E meds. Finally, some ((((hugs)))) because these things basically suck! i hope you find some answers and reliefe soon |
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10-04-2006, 06:53 AM | #3 | ||
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Junior Member
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Ellie-
I am sorry to hear about all of this. I have severe pain from my period, but not due to seizures. I did not start getting my period until later, around 15. And I am also one of the "lucky" ones (NOT) who has excruciating cramps that come with it. I would start getting the cramps a day before and they would last at least 3 days into it. And this was before the time of ibuprofen...so I suffered. I took Tylenol, and lay in a fetal position with a heating pad, sweating it out. (Little did I know that all of the Deja vu episodes, nausea and lost time that started arounf this time was probably due to this change in life, nor would I know that they were seizures until I had GMs at 29). I also was never regular....could go a month and a half then get it every two weeks...all over the place. Then I got to a point where I was spotting inbetween so I became very anemic. I was a mess. I had an abnormal pap smear when I was 22 and was sent to a specialist to check things out. When she saw me and heard everything I was going through, she asked why I wasn't on the pill to help. I looked at her blankly...the pill? Heck, I was Catholic, my mother never talked about these things...the Doctor said I had so many medical reasons to be on the pill that it was insane. So I tried it. I did help with the spotting and trying to regulate me and a few other pills later, it also helped reduce my cramps. Looking back, it also may have helped with how often I had SPs/CPs. It also may help a bit with your catmenial seizures. There have been studies where they are realizing that progesterone (whose level drops right before your period) may be protective against seizures. So maybe going on a mini-pill may help. There are also studies ongoing that are using progesterone creams and also lozenges. Lexia is right. Get to an OB/Gyn and get things checked out. When you have a hysterectomy, it opens up a whole new world of concerns since you are no longer producing estrogen and progesterone...osteoporosis and other problems now become an issue, as well as, increased risk for some cancers. Also, there are many women whose seizures became worse when they went through menapause....hey, you said these seizures are just happening more recently...are you going through early menopause?? I know that you must be hurting a lot to be thinking of going to such an extreme, but hopefully you can find a med combo that helps. I also had bad luck on Depakote. It never controlled my GMs and since it interferred with the pill, it also made things worse in that way too. Sorry I am so all over the place with this post. Please see a Doc and get things checked out. Hugs- Stacy |
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10-04-2006, 12:58 PM | #4 | |||
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Junior Member
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Its just a thought, but have your GYN and Neuro spoken about this? Is it possible that you would be able to go onto a OBC (oral Birth control) that brings your cycle to only 4x/year like Seasonale? I know from experience how terrible a "bad" period can be...I went for years with monthly N/V, fetal position cramps, etc, till I finally had enough and went on the OrthoCycline. Now I'm on OrthoTricycline, and I have made it so that I only get my period 4x/year by skipping the inactive pills in each cycle for 3 mos, as per my GYN's directions.
My monthly is much better now, no more horrible migraines, no more vomiting, no more wishing someone would put me out of my misery. I did have to have a D&C done a few times when I first started out (very large clots were causing part of the problems). I can only imagine what it would be like to have GMs on top of everything else. There are tons of different OBCs out there that have differing levels of progesterone/estrogen blends, so if one isn't right for you, don't give up. I know of so many of my friends who gave up on BCPs while in college, because of side-effects, without ever going back to try another. Don't give up...be persistent with your GYN and your Neuro to get this straightened out...you don't have to live with this, and you certainly shouldn't have to consider a hysterectomy unless it's an option of last resort. Good luck sweetie! Theresa |
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10-04-2006, 01:23 PM | #5 | |||
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Senior Member
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My GYN history is probably as colorful as the rest. First off, though - I stopped taking the Depakote for various reasons. One, it didn't work - Two, I lost hair - Three, I was on too many medications and couldn't stay awake!
My very first GYN visit showed an abnormal pap, they did a Colposcopy and found the pre-cancer cells on my cervix. Normally, the area was small enough when they took the 'sample' they took it all. If that didn't work, the cone biopsy normally did it. The stages of the cancer cells have varied from ascus (sp?), dysplasia, etc. - At the moment, I have none I think. They come and go! I've tried to have children 3 times total. I was young and trying to race the clock. They told me as a young girl my time to have children was limited due to the severity of my endometriosis, along with my cervix being rather crooked. I was able to have my son, but not without a truckload of complications. During my race, I had an ectopic pregnancy that was overlooked as a misscarriage. I had to get emergency surgery resulting in a lot of scar tissue and a damaged tube. I tried again and had another. I tried once more (third times a charm) and got pregnant with my son. I went into labor at 22 (I think) weeks, and spent over a month in the high risk unit flat on my back. They did some fetal fibre nectin (Im sure it's spelled wrong, but sounded like I spelled it) text and I failed it. It basically said my labor wasn't going to stop. I literally was in labor for over a month, I had Magnesium Sulfate via IV drip 24/7 and had to get the terbutaline shots a few times a day. I also had steroid injections because they knew I wouldn't "last". I felt labor pains every hour every day, which is what resulted in my having such an absurd pain tolerance now. It's always been high, but that one turned me into quite the warrior. My son was 6lbs and 4oz and pretty healthy considering how many drugs were in my system. Hehe, talking about this stuff still chokes me up because deep down - I want another child more than anything. The feeling of not knowing how much you could love something-someone until you have a child is amazing. I knew him for 1 second and was so madly in love with him I knew I'd never be the same. I feel bad that he wants a sibling and I can't do anything about it. They did a tubal ligation (per medical advice) when I was 21. From what I heard, it may have been the only case for the Catholic hospital to do this surgery for someone who was under 35, with only 1 child and unmarried. I wish I didn't do it, to be honest. I am still angry for being so ignorant and listening to my GYN back then. Anyway, boy did I get off track! They tried the pill but then took me off of it because I am at high risk for cancer due to my medical tests and family history. They tried to use them because I get a lot of cysts, too. I have a lot of scar tissue from laparoscopies & laparotomies. I also have had an ovarian torsion that fixed itself infront of the doctor via ultrasound. My mother and I both did that and he said we were the only two cases he saw where our ovary twisted and then UNtwisted infront of his face..hehe! I have so many GYN problems it would be hard to point out which organ is guilty of causing me so much pain. After my tubal ligation, I was fairly bitter and didn't go back for many years. I'm going in November though - and I really want some answers. I hate to be such a wimp, but I really don't think it is fair for people to have to live this way. It's getting to the point I have these 1 woman pity parties at home when no-one is around. I hate my ovaries! |
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10-04-2006, 01:37 PM | #6 | ||
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Yappiest Elder Member
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ellie, have you looked into having ablation done? it is the removel of the lining. most woman never have a period again. no more cramping etc...
that is what i am going to have onece i am over the "grace period" with our new insurance. |
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10-04-2006, 02:18 PM | #7 | |||
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Senior Member
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I have never heard of that! My friend just messaged me, her step-mother is a GYN and she called her for me. She said I need to find a new Neuro because what I experience is NOT normal.
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10-04-2006, 05:26 PM | #8 | ||
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Senior Member
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Hi Ellie,
Yrs. ago before I ever had any brain surgery I spoke to my neuro about having a hysterectomy done to stop my sz. and I was told that I would still have sz. because the hormones would still change each month. What causes the sz. is the change in your hormones the estrogen level goes up while the progesterone level goes down. Estrogen causes more excitment which can lead to a sz. while progesterone helps calm the nerves so you don't have any sz. You might want to go to a natural food store and by natural progesterone cream which is made of peanut oil and wild yams. If your allegic to either of these do not use natural progesterone. I was told to put it on my skin 5 days before my period but it didn't help much so I got it in the pill form "Prometrium" and took 1 pill 5 days before my period started but I had to stop the drug because it has been known to cause breast cancer. If you have any cramps during your period lay on your back on the floor and do leg lifts this will help stop the pain. I learned about this from my OBGYN Dr. and it works great. Here's wishing you well and May God Bless You! Sue |
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