NOCTURNAL SEIZURES

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Have you ever heard of anyone having  nocturnal seizures instead of night sweats? 
Well I have! 
 
Have you ever heard of someone having a hysterectomy and then STARTING to have seizures?  I have.
 
Has your license been taken away because of  these seizures?
 
Are you entering perimenopause? 
 
LISTEN UP LADIES!!!!
 
I have never had seizures before in my life until I hit menopause.   The doctors could not find a reason, but they did medicate me with Topamax which one of the side effects is seizures. 
 
My cronological story is below, but right now what you need to know is this: When you have no more eggs due to the onset of menopause, by natural means or by a hysterectomy, the brain does not know this.  Your pituitary gland is what tells your ovaries to "release the egg", and when you have no more eggs to release, it starts shouting at the ovaries to "release the egg", "release the egg", "release the egg" and this is what causes night sweats in women.  Unfortunately it can also cause nocturnal seizures in some women. 
 
Let me clarify that I am not a doctor, but my husband and I have experienced this phenomenon over the last 8 years and I have read a lot about it.  I am only suggesting that you document EVERY seizure that you have on the calendar and look for a pattern.  If you are being treated for seizures and you continue to have them, maybe you should be being treated for menopause instead.  The seizure is the result of a hormone imbalance.  It is not "Epilepsy" exactly.  Keep asking questions, get another opinion, don't take "I don't know" for an answer. 
 
According to the Epilepsy website there was a study done in 1999 that said that 20% of women going into menopause START having seizures.  There must be millions of women out there being treated for the wrong thing and not getting any relief.  Then on top of everything they take your license away from you which effectively takes away your livelyhood.  You should file for disability IMMEDIATELY if they do that.   
PLEASE FEEL FREE TO CONTACT US.  
MY HUSBAND AND I WILL BOTH BE HAPPY TO HELP IF YOU WANT TO TALK.
 
Anyway, as I said, here is my story:
It started on September 29, 1999 about 2 weeks after our house was flooded with Hurricane Floyd.  (Like normal everyday stress isn't enough!  Let's throw in a flood too.)  Actually it started before that but I didn't realize what was happening.   I noticed that when I was having sex the pressure in my head would build up to an uncomfortable point.  I had slightly elevated blood pressure at the time.  A few days before the 29th I had such a severe pain in my head during sex that I thought something had broken.  I went to my doctor and she referred me to a neurologist who ordered an MRI.  Before I got to the appointment for the MRI, I had the first seizure. 
I had gone to bed as usual but I woke up in an ambulance wondering what the heck was happening.  I quickly realized that I was being cared for by emergency personnel by the patch on his jacket.  This was not good, you see, I was 47, and 37 years ago the same thing happened to my father at age 46, and a week later he was dead.  I immediately asked where my husband was, because the last thing I remembered was going to sleep with him.   He was following close behind the ambulance.
 
I spent 3 days in the hospital and they found  NOTHING  wrong with me.  But they did start to medicate me for seizures.   How do you know what medication to give someone when you don't know what caused their seizure?
 
I did not have another siezure for almost 11 months, July 15, 2000.   It was great, everyone thought the medication was working, but it wasn't the medication that was working it was my hormones.  They were still doing their job.  I was still having periods pretty regularly.   
 
I had no seizures for 10 more months, until May 27, 2001, when I woke up with a migraine, which I've never had before.   (New Moon May 23)
 
5 months later, October 18, 2001,  I had a migraine all day and what my doctor had called Mitral Valve Prolapse (Like a heart palpatation) all day long.  (New Moon Oct 16th)
 
3 months later, Jan 11 and 12, 2002  I started having Grand Mal seizures at 11:40 pm on the 11th, then at 4:24 am 7:26 am and 10:15 am on the 12th.  Then I got my period at noon on Jan 13th.  (New Moon Jan 13th) 
 
Are you noticing the connection to the new moon? 
 
As I look back on this, I believe that it would not have been as bad, if I was not being medicated for an "unidentified" illness.   I truly believe that a lot of the problem was exacerbated by the side effects of the chemical which was supposed to be helping me but DID NOT!
 
2 months later, March 29 2002 migraine and MVPs all day.
 
June 14 2002 4:00 am seizure.  Migraine off sick from work. 
 
Note: When I say I had a migraine all day, I mean I was disabled all day... in and out of consciousness, in pain and , unable to function properly. 
 
Oct 7, 2002  5 seizures between Midnight and morning.  Stayed home sick 7th & 8th. 
 
March 2003 last period.
 
June 5, 2003 4:00 am seizure  6:00 am migraine lasted all day. Throwing up sick.  Stayed home the 5th & 6th  
 
August 31, 2003 Petit Mal seizures.  (new moon 27th)
 
Sept 28, 2003 8:00 am seizure (new Moon 26th) 
Sept 29th migraine all day.
 
Oct 7, 2003  5 nocturnal seizures.  Severe headache.  Home sick Monday and Tuesday.   
 
Oct 30, 2003  Post menopausal bleeding.  Had a D&C.
 
Nov 12, 2003 night time seizures that continued into the morning of the 13th.  Zoned out (as my husband calls it) several times.  Had a migraine all day. 
 
 
Nov 22, 2003 Retired.  Can't work anymore.  Finding it hard to concentrate.  (Also a side effect of Topamax)
 
Dec 24, 2003 Petit mal at Christmas eve party (new moon 23rd)
 
2004 it gets to be a monthly occurance.  Almost always on the new moon.  We could plan our vacaion around the phase of the moon to avoid having a bad time.  The only reason I noticed this is because my husband writes down every seizure that I have, and it just so happened that the calendar that he was writing on showed the phases of the moon. 
 
Jan 4, 2004  5:30 am  bad dream.  Zoned out in pm. 
 
Feb-11 & 12: migraines & blackouts
Feb-13: ambulance to ER from chiropractors office
Feb-14: halucinations    new moon 20th
 
March-12 to 15: my husband and I went to New Orleans for my nephew's wedding.  I don't remember it at all.   New moon 20th.
 
April 1:  4 seizures so bad that I broke off 2 fake nails.
Seizures moved to the Full moon.
 
May 6:   5 seizures between midnight & 10 am.  Full Moon May-4
 
June 16: Migraine all day & up all night the 17th.  Back to the new moon 17th.
 
August 7:  5am seizure.  Migraine all day.
 
Sept 14: 3:00 am seizure.  Migraine in evening; zoned out 8:30 pm.  New moon Sept 14th.
Sept 15: Zoned out 8:30am. 
 
Sept 30: Post menopausal bleeding.  (last period was March 2003.
 
Oct 16: 4:00 am seizure.  New Moon 14th.
 
Nov 10: 5:30 am seizure.  New moon 12th.
 
Dec 6: Had a D&C for the bleeding in Sept.  
 
One day I was transfering the info from the calendar to a piece of paper to show the doctor how many occurances I have had, and I noticed that they were all occuring in a cycle on a monthly basis, almost like a period. 
 
This was the day Dec 11, 2004, when I was transfrring the info.  I was standing at the kitchen counter writing down the info on a sheet of paper to give to the doctor and all of a sudden I was looking up at a paramedic. 
 
Dec 11: seizure 10:00 am.  4:00 pm passed out; fell on the floor in the kitchen.  911 asked me if I wanted to go to the hospital and I said yes, because I knew there would be more coming and they would be able to monitor me and maybe find out what was causing the problem, so they took me to the ER.   I stayed overnight.  They found nothing again.  New moon 13th.    
 
 
I have since found out that in 1999 there was a study done where that they found that 20% of women going into perimenopause START having seizures.  It seems that the  pituitary gland tells the ovary to release the eggs and when there are no more eggs to release the brain starts screaming at the ovaries to release the egg and this activates the motor center which is what causes night sweats or in my case (and maybe yours) night seizures.  
 
 
 
2005 it is still monthly
 
2006 it is still monthly.
 
it's like I traded my periods for seizures.
 
I have never had seizures before in my life until I hit menopause.  I can tell you that you have to be very proactive in getting your doctor to read up on it and get you the right meds.  Maybe I should have been given hormones instead of seizure meds but I'm pretty much "through" menopause now and this symptom is subsiding now (2007). 
 
I am feeling MUCH better than I was a few years ago.  That is why I say I should have been given hormones instead of seizure meds.  They tried to treat the symptom, without finding the cause.  Unfortunately, I did not have a close relationship with a gynecologist so I could not find one to listen to me and treat me with hormone replacement therapy for the few years that I needed it. 
 
You really must take your health in your own hands.   I told my neurologist that I want to get off this medication and he is complying.  I have reduced the medication from 300 mg a day to 50 mg a day over the past year, and I feel much more clear-headed.   It is now December 26, 2007 and I haven't had a seizure in 13 months (I'm "through" menopause).   
 
 2008
 
I am now taking 1/2 mg of Klonopin before bed and I haven't had a seizure for almost 2 years.  Klonopin is for anxiety and seizures. 
 
I was doing good until April 25, 2008.  I had a seizure at 3:15 am and also on April 26 at 4:20 pm.  Then I was okay until July 16 at 8:00 am.  The full moon was the 18th.  I just had that one for the month.
 
 
July 16th   8 AM seizure
 
August 11 @ 3:20 am I had one.  And then I had 7 on August 14th starting at 1:45 am and ending at 2:45 pm.  Full moon was the 16th. 
 
October 2nd  7 AM  and 10 AM seizures, so bad I broke the mouthpiece they gave me to wear at night.
 
Oct 27th  1:40 AM  4 AM 6:40 AM and 8 AM
 
DEC. 4th 7 AM and DEC 5 8AM  seizures
 
2009
 
Jan 8  5AM seizure  JAN 10th  6:30 AM  Full moon 11th
 
FEB 21st  1:17 AM seizure  10:00 AM threw up, 3:00 PM seizure, and 4:30 PM seizure.
FEB 22nd  small seizure at 6:00 AM
 
March 20th bad headache all day  slept a lot
March 30th Headache all day  slept most of the day.
 
June 2nd  small seizure at 5:00 AM
 
July28th Uncontrolable CRYING FIT possibly due to the meds.
 
 I haven't had any seizures from June 2nd to Nov 2 2009
 
In 2010, I had maybe 3 seizures.
 
in 2011 I had 1 in January.
 
It is now June 20, 2012 and I haven't had one since Jan 2011... almost 2 years.  
 
I have weened myself off the meds over the past year and a half.  I am not taking any now.  I'm keeping my fingers crossed and praying that I am done with this adventure. 
 
 
 

3/20/2007 just started to build this site.   Never built a website before, so please be patient with me. 
11/16/2009 updated how I am doing.

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