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suzydclar1

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Hi, I'm new and excited (nervous, hopeful?) for the chance to connect with others who may be in a similar situation to mine.

Seizure history: I had my first partial seizure at the age of 19. No explanation, I was just riding in a friend's car and as we pulled up to the curb to park I kind of fixated on the license plate of the car in front of us. There was a sense of deja vu and that something horrible was happening or was about to happen. Breathing got a little sketchy too and I couldn't talk for a few seconds. It freaked me out, but lasted less than a minute and I was fine afterward. This is the basic formula for the seizures I have had ever since, with varying degree of visual and aural hallucinations. Always the familiar feeling of impending doom. My seizures are of a catamenial nature-- usually a week before my period. But not always.

The drug I'm on is Lamictal. I have also been prescribed 1mg Lorazepam to control any breakthrough clusters. I rarely used it at the beginning, but have been taking it more regularly (it helps me sleep!)

Question: Has anyone found Lorazepam to be helpful? Side effects? Dependence? Words of caution?

Thanks so much
 
suzydclar1 said:
Hi, I'm new and excited (nervous, hopeful?) for the chance to connect with others who may be in a similar situation to mine.



Seizure history: I had my first partial seizure at the age of 19. No explanation, I was just riding in a friend's car and as we pulled up to the curb to park I kind of fixated on the license plate of the car in front of us. There was a sense of deja vu and that something horrible was happening or was about to happen. Breathing got a little sketchy too and I couldn't talk for a few seconds. It freaked me out, but lasted less than a minute and I was fine afterward. This is the basic formula for the seizures I have had ever since, with varying degree of visual and aural hallucinations. Always the familiar feeling of impending doom. My seizures are of a catamenial nature-- usually a week before my period. But not always.



The drug I'm on is Lamictal. I have also been prescribed 1mg Lorazepam to control any breakthrough clusters. I rarely used it at the beginning, but have been taking it more regularly (it helps me sleep!)



Question: Has anyone found Lorazepam to be helpful? Side effects? Dependence? Words of caution?



Thanks so much
Click to expand...



Hi Suzy and welcome to CWE! My new neurologist added Lorazepam to my regimen for breakthrough seizures too and I have noticed less, for the most part. I do sleep a lot more when I take it. I usually take it when I have a headache that won't go away despite medicine since that's when more seizures happen for me, other than those around my cycle.

Since Lorazepam is a narcotic, I think we do run the risk of dependence if we take it for any seizure that comes along.


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Hi suzydclar1, welcome to CWE!

I'm on Lamictal, though for tonic-clonic seizures rather than partial ones. My neuro prescribed a small amount of Lorazepam to take with me when I travel out of the country in case I have a seizure with no hospital nearby. I haven't had to take it, but I think the idea was to avoid taking it on a regular basis, since as Daroswene notes it can be habit-forming.

Since your seizures are catamenial in nature, have you considered hormonal treatment approaches (such as the Nuvaring or the depo shot)?
 
Nakamova said:
Hi suzydclar1, welcome to CWE!

I'm on Lamictal, though for tonic-clonic seizures rather than partial ones. My neuro prescribed a small amount of Lorazepam to take with me when I travel out of the country in case I have a seizure with no hospital nearby. I haven't had to take it, but I think the idea was to avoid taking it on a regular basis, since as Daroswene notes it can be habit-forming.

Since your seizures are catamenial in nature, have you considered hormonal treatment approaches (such as the Nuvaring or the depo shot)?
Click to expand...



Good idea on hormonal treatment too. I can't take birth control methods because of a Leiden Factor V deficiency that causes clots easily. In another thread, progesterone cream and an anti-estrogen diet were recommended too.


Sent from my iPad using Tapatalk
 
Good idea on hormone treatment. My neuro wanted me to go on a progesterone pill to control estrogen. Talked to OB/GYN and primary care physician, both of whom preferred me going on the pill. I haven't started doing either one yet. Thank you for the suggestion of Nuvaring and depo shot-- I will look into those!
What I'd really love is to get rid of the uterus altogether. Not kidding! I'm 45 and done having kids. I worry that the hormonal changes I will be going through will make things worse for me.

Is there a way to search for threads on here that contain specific information (like hormone related seizures)?
 
Hi Suzy, welcome.

I don't have any experience with the prescriptions you're taking, you mentioned deja vu' (aura) and I do know how that feels.

I ran across this list that I thought was interesting about other aura's.

People, with epilepsy, suffer from what are collectively called the “Vus” (voos). Every one of us endures the vus to some degree
and it can be made worse by our medications.

First there is “Deja-vu” (day jah), the feeling that one has experienced something before.

Then there is “Jamais-vu” (jah may). This is the feeling that a common experience is completely new. This could be like forgetting (about 30 seconds) how to tie your shoe.

Then there is “Presque-vu” (presk). This is the inability to find a word, (or part of a word) for a moment.

Everyone suffers these to some degree, but people with epilepsy feel them far more intensely.
 
Hi suzydclar1,

Welcome to CWE! I also have had catamenial seizures in the past and the seizures would happen 7-10 days before my cycle then again after it was over. I found out that taking Diamox Sequels 5 days before my cycle reduced the seizures a lot, and that's because this drug will get rid of the extra amount of fluids in a woman's body at that time of the month. What really helped me the most and you may want to try it is to eat some nuts of any kind. The nuts have progesterone oil in them and when a women is going through her cycle the progesterone level drops a little and it's progesterone that helps calm the nerves while at the same time the estrogen level increases and estrogen can cause excitement in the nervous system and can trigger seizures. I also found out I had to stay away from beverages and food with nutra sweet in them because that triggered seizures for me also. I've had absence and complex partial seizure for 45 yrs. and I had 2 surgeries to reduce my seizures but what has helped me more than anything is CBD oil (medical marijuana) and using coconut oil on my skin 1-2 times a day. The coconut oil builds up ketones in my body which reduces my seizures and the medical marijuana has done wonders for me. I get it in a mouth spray and squirt it twice a day in my mouth and my seizures have decreased a lot. I wish you the best of luck and May God Bless You!

Sue
 
Porkette, thank you for this information! I have been curious about the ketogenic diet and how it's being used a lot lately for seizure control. I know that coconut oil has many skin health benefits, so I will definitely try it for the ketones! I love nuts (almonds win!) so question-- do you increase eating them during the week before your cycle? Along with Diamox? I'm totally going to try this too. I see that you you are in New York-- not sure what the laws there on medical marijuana so forgive me, but how do you get your CBD oil?
I wish we could sit down and have coffee! I know I need to check in to more naturopathic aids or remedies and I can't believe how much great info you and others have shared with me here. It's so good to not feel alone! Now I need to sort through and find what works for me as I begin my journey through the next stage of my life-- menopause(boo!) because it is getting worse. I worry about my brain function A LOT *sigh*
sorry if I seem all over the place-- I wish I would have known about this site years ago! I'm a little like a kid in a candy shop right now haha!
 
Hi suzydclar1,

I usually increase the almonds right before the cycle and when I first started taking Diamox I only took it for 5 days each month and that was 1 week before my cycle.
Each state in the U.S. has now made it legal for the CBD oil. I buy it on line at healthy hemp oil.com I get the extra strength mouth spray in a mint flavor but there are other types to use if you don't want that. You can purchase the kind you want and they will mail it to you but before you do that check with your pharmacist and make sure the cbd won't interact with any other meds you are taking. Another thing I do is take vitamin B12 once a day 1000 mcg. and that has really helped reduce my seizures.
Here's wishing you only the best of luck and May God Bless You!

Sue
 
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