It is going to be my birthday next Wednesday. The big 50! I have been thinking and I am starting to give myself a lot more credit for things I have done. I did finish college. I did get a degree. I did work in respiratory therapy and the more I think about it I am not sure how I did it. I would have seizures call in and go to work the next day. I was able to work night shift the whole time. I have been able to learn the computer and learn how to do blogs and newsletters. I did buy a home but it was too much for me. I want a townhouse or condo next time. I do want a bassett hound again. I had a dog named Sam that I got from the SunCoastBasset Hound Rescue. http://suncoastbassetrescue.org/ He was the best. He could tell I was going to have a seizure and was not trained to do so! I think it was the change in smell from the hormones. He would not leave me! He was really funny also. He LOOOOVED Blondes. I am not one. He loved women so I had no problem taking him to the vet. He thought it was a singles bar. lol. Unfortunately, He ended up with cancer and died. It was very hard. Lot to think about today. Friend of mine had just had emergency heart surgery. Everyone is in shock! Makes you think about what is important.
Thursday, November 13, 2014
Saturday, November 8, 2014
Tie between Epilepsy and Hormones
Here is a great article about the tie between Epilepsy and Hormones.
Yes it does exist! Time for the Doctors to pay attention.
THURSDAY, Oct 14th 2010
Epilepsy and Your Hormones
authored by Sheryl Kraft
Epilepsy had always been a topic that was very foreign to me—until it hit a bit close to home.
About five years ago, when she was 52, my sister found out she had epilepsy. She was at work and had just hung up the phone with me after a brief conversation. She remembers feeling a bit "funny"—and the next thing she knew, she woke up in an ambulance, confused and frightened. Lynne had suffered a "grand mal" seizure, the most common type, falling from her chair to the floor, her limbs at first stiffening, then jerking wildly.
Her doctors were not able to pinpoint the exact cause of her condition and I'm happy to report that since the initial episode, my sister has been seizure-free with the help of the two antiseizure drugs she takes each day.
Could it have been set off by stress? Perhaps. But we all have stress in our lives—yet we all don't have epilepsy. Could it have been the change of hormone levels that occur around this time? Perhaps.
One thing that is known for sure is that epilepsy affects—and is affected by—hormones. Estrogen andprogesterone, with all their fluctuations, can have a profound effect on seizures, either increasing their frequency and/or changing their patterns.
And around midlife, hormones are changing at lightning speed. That's why it's so important for women with epilepsy to be aware of these important facts and keep an open dialogue with their health care team even before menopause hits. Here's what you need to know, from birth control through to menopause and beyond:
- Birth control: If you use it, be aware that some antiepileptic drugs (or AEDs) can make your birth control less effective. Uh-oh … unintended pregnancy. Conversely, some birth control pills can mess with your AED levels. Uh-oh … uncontrolled seizures.
- Pregnancy: If you have epilepsy and want children, you can have them. But it's important to let your health providers know in advance. Your epilepsy meds may need to be adjusted to make sure you are getting consistent levels.
- Menopause: It may come three to five years earlier for women who experience frequent seizures. Menopause may also change the frequency of your seizures; about 40 percent of women experience their seizures worsening.
- Hormone replacement therapy (HRT): HRT can also increase seizure frequency. Is it worth it? Discuss your options with your health care provider.
- Bone density: Your bone density can be negatively affected by long-term use of some AEDs, potentially increasing your risk of fractures, osteoporosis and osteomalacia (a softening of the bones due to a lack of Vitamin D). It's important for all women to have bone density monitored regularly and practice other bone-strengthening measures, like weight-bearing exercises and intake of calcium and Vitamin D—and it's even more important for you.
- Sleep and stress: Too little sleep and too much stress can trigger a seizure. Make sure you get enough—and not too much—of each.
- Alcohol: Drinking alcohol may worsen seizures.
- Other medications: Taking other meds (as in the case of birth control, mentioned above) can interfere with the levels of AEDs in your body. The same goes for taking AEDs: They can alter the levels of other medications you take for other conditions.
- Exercise: Use it! It can help counteract the bone loss that may come with medication. It can also help reduce stress, keep your weight balanced and keep your energy levels at their peak.
Thursday, November 6, 2014
http://www.candlelightconcert.org/

Here is a link to a great website showing a concert series to help Epilepsy Awareness. amazing what you can find online!
Candlelight Concert Series for Epilepsy Awareness
The Candlelight Concert Series for Epilepsy Awareness is a concert series in Pennington, NJ designed to raise awareness about epilepsy. It's grown out of a very popular house concert series and is now held at Trinity United Methodist at 1985 Pennington Rd, Ewing NJ. When you purchase your ticket using Paypal below, you will be added to the list; no physical tickets are printed or sent. You can bring you receipt to be safe. All shows are general admission. For more on this series, check out this article from The Times of Trenton here. The Epilepsy Foundation of New Jersey will be on-hand for most of these events to provide information and accept donations.

Here is a link to a great website showing a concert series to help Epilepsy Awareness. amazing what you can find online!
Candlelight Concert Series for Epilepsy Awareness
The Candlelight Concert Series for Epilepsy Awareness is a concert series in Pennington, NJ designed to raise awareness about epilepsy. It's grown out of a very popular house concert series and is now held at Trinity United Methodist at 1985 Pennington Rd, Ewing NJ. When you purchase your ticket using Paypal below, you will be added to the list; no physical tickets are printed or sent. You can bring you receipt to be safe. All shows are general admission. For more on this series, check out this article from The Times of Trenton here. The Epilepsy Foundation of New Jersey will be on-hand for most of these events to provide information and accept donations.
Wednesday, November 5, 2014
repost of Catamenial Epilepsy do you have it
Catamenial Epilepsy – Do You Have It? | August 7, 2011
19 Votes
Do you notice that your seizures worsen just before your period…or during the first few days…or at mid-cycle? You could have “catamenial epilepsy,” or hormone sensitive seizures, a tendency for increased seizures related to your menstrual cycle. The causes of catamenial epilepsy are not totally understood. It could be an imbalance between your two female sex hormones, estrogen and progesterone, or you may not be producing enough progesterone during the second half of your menstrual cycle. It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.
Women with partial epilepsy, especially temporal lobe epilepsy, seem to be most likely to have catamenial epilepsy. And before puberty, girls may have recurrent clusters of seizures each month until puberty, when the seizures become catamenial.
Some theories have been suggested to explain why the menstrual cycle should affect epilepsy, including cyclic changes in the immune system. It has also been suggested that, rather than the epilepsy itself becoming worse, women’s perceptions of epilepsy frequency before a period may be due to dramatic mood change or premenstrual tension. (Sound familiar?)
One of the main theories, however, is that seizures around periods may be due to fluctuations in the two major reproductive hormones, estrogen and progesterone, which rise and fall in the menstrual cycle. The effects of those hormones on brain excitability are at the root of this theory. Estrogen seems to be the “bad guy,” lowering seizure threshold, while progesterone is the “good guy,” offering more protection against seizures and increasing seizure threshold.
And it has been shown that hormones directly change EEG activity. For example, in one study, an IV injection of estrogen resulted in clinical seizures in 4 of 16 women with epilepsy and activated EEG epileptic-type activity in 11 of these women. An IV infusion of progesterone decreased this type of activity temporarily in 4 of 7 women with partial epilepsy.
But the question remains, do you actually have catamenial epilepsy or is it stress, lack of sleep or even the effectiveness of your meds?
To start with, it’s a good idea to keep a menstrual diary, charting your seizures as relative to the stages of your period. Do the seizures occur more often before your cycle begins…during the first few days…or at mid-cycle? Next, you might want to have your basal body temperature and your serum hormone levels checked.
And if you do have catamenial epilepsy, don’t despair. Just getting diagnosed is a positive. Then you can actually do something about it. And there are several options available.
Extra medication in the week before menstruation in the form of an “add-on” AED such as clobazam is the most common method of treating seizures around the time of menstruation.
Other methods include treating catamenial epilepsy with the contraceptive pill in efforts to achieve a better balance of hormones.
Another theory is that seizures around menstruation are linked to premenstrual water retention, which upsets the normal balance of the anti-epileptic drug in your body, thus making it less effective. For this reason, doctors have commonly treated catamenial epilepsy with diuretics to reduce fluid.
Then there’s hormonal therapy — such as progesterone. When taken in capsule form on a cyclic basis, it may successfully reduce catamenial seizure risk in some women. Overall, natural progesterone is better tolerated than synthetic agents, but no evidence substantiates whether one is more effective than the other. I think for many, it might be may be a case of individual preference.
But any way you look at it, having your period and all its accompanying aches and pains is bad enough. When seizures become part of the mix, it’s like adding insult to injury.
That’s where a doctor comes in. My preference is a female endocrinologist. (Sometimes, men just don’t get it.)
The bottom line is: there’s no reason to live in fear or misery. Get yourself diagnosed and you could well be on your way to a solution.
Author
Phylis Feiner Johnson
I've been a professional copywriter for over 35 years. I've also had epilepsy for decades.
My mission is advocacy; to increase education, awareness and funding for epilepsy research.
Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.
My mission is advocacy; to increase education, awareness and funding for epilepsy research.
Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.
Epilepsy 101
Epilepsy is the 4th most common neurological problem – only migraine, stroke and Alzheimer’s disease occurs more frequently. There are many different ways to explain how often a disease occurs. Here’s a few points to consider.
What do the terms incidence and prevalence mean?
- The incidence of epilepsy looks at the number of new cases of epilepsy in a given year or period of time. It’s often given in a ratio such as ‘x’ out of 1,000 persons develop epilepsy each year.
- The prevalence of epilepsy looks at the number of people with epilepsy at any given point in time. This includes people with new onset epilepsy as well as those who have had epilepsy for a number of years. This is usually given in a total number, such as ‘x million’ people, but can also be given as a ratio.
- The difference between these numbers is how they are used and what they represent. To show the number of people affected right now, usually the prevalence number is used.
- To show how often epilepsy occurs, the incidence number is used. These numbers are different because not everyone has seizures or epilepsy for the same amount of time. Some have epilepsy that goes away, others may live with epilepsy all their life.
- The incidence number also tells how many people in a certain group have epilepsy. For example, these numbers can show how often epilepsy occurs at different ages, in different ethnic groups, or in different regions.
What is the incidence of epilepsy in the United States?
- The average incidence of epilepsy each year in the U. S is estimated at 150,000 or 48 for every 100,000 people.
- Another way of saying this- each year, 150,000 or 48 out of 100,000 people will develop epilepsy.
- The incidence of epilepsy is higher in young children and older adults. This means that epilepsy starts more often in these age groups.
- When the incidence of epilepsy is looked at over a lifetime, 1 in 26 people will develop epilepsy at sometime in their life.
What is the prevalence of epilepsy in the United States?
There are many different estimates of the prevalence of epilepsy. These numbers vary depending on when the studies were done, who was included and a host of other factors.
- The number of people with epilepsy, using prevalence numbers, ranges from 1.3 million to 2.8 million (or 5 to 8.4 for every 1,000 people).
- The estimate currently thought to be most accurate is 2.2 million people or 7.1 for every 1,000 people.
- However, higher numbers of people report that they have active epilepsy, 8.4 out of 1,000 people. These numbers are even higher when people are asked if they have ever had epilepsy (called lifetime prevalence). 16.5 per 1,000 people reported that they had epilepsy at some point in their life.
Authored by: Patricia O. Shafer RN, MN | Joseph I. Sirven, MD on 10/2013
Reviewed by: Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN on 3/2014
Monday, November 3, 2014
November Monday
Wow it is our month. the weather is amazing in Florida. it is why the snowbirds come to Florida. I did well today was able to get to the YMCA and do the water aerobics class. I am really happy about that. no problems. Here's to a happy week
Saturday, November 1, 2014
ooooppsss
I broke my medicalert chain I do have a back up with a medic alert watch. I found out you can put the medic alert app on your smart phone too.
http://www.medicalert.org/product/catalog/medical-ids
They have an amazing variety of choices and prices. great way to make yourself safer
http://www.medicalert.org/product/catalog/medical-ids
They have an amazing variety of choices and prices. great way to make yourself safer
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