Catamenial epilepsy post menopause

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elyblue

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Hi everyone.
This is my first ever post on a forum. I am having partial seizures which come along in clusters approximately every four weeks. The clusters last between 24 and 48 hours. The seizures finished yesterday and this month I had maybe twenty seizures. I am left today feeling like I have been run over by a bus. My mood is very low and will be for the next four or five days. I have the usual Da javu followed by panic in the pit of my stomach followed by shivers. I then get a rush of heat from my stomach through my neck into my head. It subsides after maybe thirty second but leaves me heaving and nauseous. I then go four or five days feeling like I am living in a black hole with fear and panic, this eventually wears off leaving me back to normal for the next four to five weeks. I have been like this for the last four years and was earlier this year diagnosed with epilepsy. The first question I would like to ask is could this be hormonal ? My husband and I have read that it could be but don't no where to look for help. My neuro has prescribed Lamictal at the end of march and I went up to 100mg a day this caused my seizures to be more frequent and intense. I feel if we could treat the trigger then we may avoid the Aeds. or can someone on here please tell us the way forward. Thanks everyone,
 
Hi elyblue, welcome to CWE!

You might want to ask for a hormonal work-up. Estrogen can often be epileptogenic. Ordinarily, estrogen levels decrease after menopause, so for many estrogen is less likely to be a trigger at that stage. On the other hand, progesterone levels also drop, and since it balances out estrogen, the decrease can be a triggering factor. If it looks like hormones are playing a role, you could consider treatment with natural progesterone (Prometrium) to see if it helps.

Unfortunately, there haven't been enough studies of hormones and epilepsy, particularly post-menopausal epilepsy, so treatments aren't well-understood. But if Lamictal is making your seizures worse, then it makes sense to look for alternatives.

Best,
Nakamova
 
Everyone suggests keeping a journal. I've been charting my menstrual cycle right alongside my entries to see if there is any correlation. That might be a start. :) and welcome to CWE :)
 
elyblue said:
Hi everyone.
This is my first ever post on a forum. I am having partial seizures which come along in clusters approximately every four weeks. The clusters last between 24 and 48 hours. The seizures finished yesterday and this month I had maybe twenty seizures. I am left today feeling like I have been run over by a bus. My mood is very low and will be for the next four or five days. I have the usual Da javu followed by panic in the pit of my stomach followed by shivers. I then get a rush of heat from my stomach through my neck into my head. It subsides after maybe thirty second but leaves me heaving and nauseous. I then go four or five days feeling like I am living in a black hole with fear and panic, this eventually wears off leaving me back to normal for the next four to five weeks. I have been like this for the last four years and was earlier this year diagnosed with epilepsy. The first question I would like to ask is could this be hormonal ? My husband and I have read that it could be but don't no where to look for help. My neuro has prescribed Lamictal at the end of march and I went up to 100mg a day this caused my seizures to be more frequent and intense. I feel if we could treat the trigger then we may avoid the Aeds. or can someone on here please tell us the way forward. Thanks everyone,
Click to expand...
Hi There. This is my first post as well, on any forum. I was interested to see your post and am sorry you are having problems. I too believe my seizures are connected to my hormones but anytime I have asked the Doctors or Neurologist, they have said it could be but didn't seem interested in pursuing it any further. My own GP said, "well, you can't take away your hormones". This I know! I just think it would be useful to know and would maybe give me some hope that it may all stop after the menopause. My epilepsy started out of the blue when I was 46 (I am now 51), for no apparent reason. I have them every 3 - 4 weeks and very often, not always, it will be on the day before or 1st day of my period. My seizures do not sound as bad as yours and are more like absences but they do leave me feeling exhausted for 24 - 48 hours afterwards and I do some strange things during them, none of which I remember afterwards. I have been on 3 different meds. without success (Lamictal was one of them). I am pleased to say that I have just started a new one, Pregabalin, and have not had any seizures since then but am trying not to get too excited. It would be interesting to hear any advice or useful info. from any other ladies on connection between seizures and menstrual cycle. Thanks very much.
 
My first medically documented grand mal and perimenopause started when I was 35. I keep a very detailed journal of everything. Recently I graphed my seizures, menstrual cycle and sleep patterns. I have seizure peaks that coincide with my cycle. I would definitely keep a detailed journal.

My male drs thought I was nuts. It was my female epileptologist that has been the most informative. Now I take my spreadsheets/graphs to every drs appt. Kind of hard to debate :p
 
glad to hear your new medication might be helping. In my case i feel i need to treat the cause not symptom, i never suffered from seizures before i started going through the menopause so what is it that is causing them?. I have been on a site about catamenial seizures and a doctor called Alan Jacobs who is a nueroendocrinologist, i have asked doctors in this country about them to no avail. I feel someone who knows about seizures and hormones must be a lot more help. I am also considering natural progesterone cream which i believe is unliciensed therefore only available through a private prescription! Happy days by the time i find any relief from my symptoms i will have gone through the menopause, any other advice would be greatly appreciated.
 
You can get over-the-counter natural progesterone cream:
[ame="http://www.amazon.com/Renaissance-Natural-Progesterone-Cream-Dispenser/dp/B005N9BKQ6"]Amazon.com: Renaissance Natural Progesterone Cream , 3.5 oz. Pump Dispenser: Everything Else@@AMEPARAM@@http://ecx.images-amazon.com/images/I/310HBLm3zQL.@@AMEPARAM@@310HBLm3zQL[/ame]
 
Can you buy natural progesterone cream over the counter in the UK, or is it only available over the internet?
 
hello this is my first post on this site and what have described is exactly what I have been having for the last 10 years! It started when I was 44 and I have tried to explain to my husband exactly how it feels and now all I need to do is show him your post! it is such a relief to read that I am not the only one with this AND not going mad!! thanks again.
 
I have never noticed a correlation between my cycle and seizures except on an occasional basis (that is, I might go a few months where they get worse around my period, but most of the time there is no connection). I just wanted to say that the only doctor who has ever asked me about this possible connection, or who ever brought up the topic of catamenial epilepsy, was a WOMAN. None of the male neuros that I saw ever even mentioned it or asked me about it (I did know about it, though, from reading). Have you seen a female neuro, by any chance? They might be more open to exploring the possibility. Just a thought.
 
The more I read into epilepsy, catamenial or simple partial seizures the more I realize just how complicated this subject is. Up to now I have tried hormone creams, anxiety tinctures, yoga, conventional drugs but nothing seems to be helping. The worst thing about my cluster seizures is the feeling directly after and the following 2-3 days. The fear and dread of impending doom is unreal and it is this that makes me anxious when approaching the time of the seizures. Does anybody else experience this. I have been told it is because of the right temporal lobe being affected which deals with these feelings, I hate it!.
 
The feeling of dread can be a simple partial seizure, particularly one that originates near the amygdala in the temporal lobe. The amygdala is the part of the brain involved in generating fear responses. Of course, knowing that probably doesn't make it any less discomfiting. Maybe you could see a therapist or counselor to deal with the stress of those days? And plan ahead to surround yourself with things that give you comfort -- friends, activities, photos -- whatever will help distract and reassure you.
 
Yes I also get those feelings. I have kept a diary of what happens and when I get those feelings, I write fls (feel like s**t!).I have tried progesterone cream and have been using it since February and thought things were improving until last week when I had five in one day. When I first started using the cream I was only having the odd one. I think my body has gotten used to the cream so I am thinking of stopping it now as it is expensive. I don't mind the price if it's working. One of the worse parts for me is the knotted stomach feeling beforehand because I know what's coming soon.
 
Post Menapause Catamenial Epilepsy

Hi everyone - this is my first posting. I have had catamenial epilepsy since being taken off HRT cold turkey about 8 years ago (I am now 59) It took 4 years to diagnose and that was only when I self diagnosed and went privately to a neuroligist. I am on medication - Lamotrigine - but I still have night seizures every 4/5 weeks. They mostly come in groups of 2/3 and involve (according to my husband) Lip smacking and gagging. When I waken in the morning I have short term memory loss. i.e. I can't remember what I did yesterday or places I have visited in the last 10 years or so (even regular restaurants) and have no memory of people I have met before (embarassing in business situations) but I can still remember what shoes I wore on my first day at school !! My periods stopped years ago, but other than that no symptoms of the menapause. What I would really like to know is if there is any hope on the horizon that these seizures will end once any form of hormones have left my body? Is it the case that they never leave your body? In spite of marvellous support from my husband and family, I am beginning to get quite despondent. Has anyone had them stop once through the menapause ? Help ! Mx
 
Hi Marjory, welcome!

Unfortunately, epilepsy is still pretty mysterious and idiosyncratic, so there's no way to predict how it will unfold for you. The fluctuating hormones may have been the initial trigger, but it's possible for new triggers to develop and for seizures to change as a result.

Have you seen an endocrinologist recently to check your hormone levels? Catamenial epilepsy is can be caused by both high estrogen and low progesterone, so if either those are still factors it may explain your continuing seizures. Has your neurologist suggested changing the dose or medication to se if that helps? You might want to ask about progesterone cream or lozenges to see if they help as well.

Best,
Nakamova
 
I also had seizures that were brought on by my mentrual cycle and worsened once menopause happened. I was controlled on dilantin for many years. but then the newer meds came out, lamicltal, didnt work, then keppra, caused more seizures. at age 54-56 i was still having seizures on keppra 3 in a 7 month period. and all within a 4 day time span during those 7 months. it seemed to happen during the old menstrual cycle timing, even though I was no longer cycling, and the doctors didn't believe me. Topamax is the thing that works for me. It is a broad spectrum aed and a carbonic anhydrase inhibitor , which is what they would give as an adjunct for catamenial seizures
 
catemenial seizures post menopause

unfortunately I had a breakthrough seizure 7 months ,while on topamax, after my last seizure. and the date was within 2 days timing in the month. Feb 12 was the previous one, Sept. 14 was the latest one. my events are still following a monthly hormone cycle even though i had my last period 5 or 6 years ago. my neurologist says that adjusting hormones at this point in life offers no benefit, i am 56. has anyone seen a neuro endocrinologist about this issue post menopause. I cant find any info on the web., I can only find pre and during the menopause. ?
 
Welcome. Menopause has a lot to answer for doesn't it? I hope you get some answers soon because although my epilepsy was not considered related to menopause I am going through that as well. I would really like to know who made the rule that it doesn't matter what time you go to bed the night sweats start as soon as the head hits the pillow! I do get some of the symptoms you experience but I also have absence seizures and olfactory hallucinations. I thought it might have been to do with menopause but I am nearly through it and I was only diagnosed last year. I am 54. I have had a few bumps on the head over the years and although they weren't really major they may have been partially responsible for my epilepsy. I am diagnosed with complex partials. Good luck. I hope things settle down for you.
 
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