What networks or websites have you used for support or information about your illness?
Local Epilepsy Foundation support group – They have been a good resource of information for years and sometimes it is good to ask fellow patients who are also going through the same problems that you are facing. They also help provide support in times when you feel no-one else will understand.
I am a bit of an internet junkie. I have obtained quite a bit of information from some reliable websites.
CURE: Citizens United for Research in Epilepsy
Talk About It
Google News Feed – If you tailor your google news feed for ‘epilepsy’, it can be a great resource to help you find the latest epilepsy news.
This is just a short list of the most helpful (in my opinion).
According to the Epilepsy Foundation:
- An epilepsy syndrome is defined by a group of features usually occurring together.
- The features in a syndrome may include types of seizures commonly seen, age when seizures commonly begin, part of the brain involved, usual course, genetic information, and much more.
- Collectively this description provides information on what medicine and other treatments may be helpful.
If you click on the link or image above, you will go to a page on Epilepsy Foundation website that talks about each of these syndromes in detail. In order to help illustrate how different epilepsy can be for various patients, I will pick a few of these syndromes and write some blog posts about them in the next few weeks. If you have a request, please let me know.
For years, I have tried to cut the amount of carbs that I eat. I have several reasons for wanting to do this. Today I finally took things one step further.
I have many personal reasons for wanting to lose weight. According to most BMI calculators, I would need to lose a lot of weight before I would be considered to be at a “healthy” weight. I believe it would be a significant boost to my self-esteem to lose some weight. It may also help me make a good first impression when I go to interviews. It is also infuriating to find out that most of the cute dresses/outfits that I like are not in my size.
The main reason for attempting this is better seizure control. According to the Epilepsy Foundation, the modified atkins diet has proven to be effective in reducing seizures. The modified atkins diet is low carbs and high fat. Does it work?
In studies so far, yes. About half had a 50% reduction in seizures after 6 months. Many were able to reduce medications. (see epilepsy.com)
What did I do differently?
Today, I started searching for interesting recipes that were ‘Modified Atkins’ friendly. Until now, I had concentrated on reducing the number of carbs. Today, I took things one step further and started to actively look for recipes that would work for me. At this blog, I found a bunch of recipes that I thought I could start using right away. I am looking forward to trying some of the recipes.
Consult your neurologist first before attempting this.
General First Aid for All Seizure Types
The Epilepsy Foundation has developed some general first aid guidelines. If you are not sure what to do, the following steps are a great place to start. According to epilepsy.com, “Remember that for the majority of seizures, basic seizure first aid is all that may be needed.” For more information on any of these steps, check out the Epilepsy Foundation’s First Aid page.
- Always stay with the person until the seizure is over.
- Pay attention to the length of the seizure. Know when to give ‘as needed’ or rescue treatments, if prescribed, and when to call for emergency help.
- Stay calm, most seizures only last a few minutes.
- Prevent injury by moving nearby objects out of the way.
- Make the person as comfortable as possible.
- Keep onlookers away.
- Do not forcibly hold the person down.
- Do not put anything in the person’s mouth.
- Make sure their breathing is okay.
- Do not give water, pills, or food by mouth unless the person is fully alert.
- Call for Emergency Medical help if
- A seizure lasts 5 minutes or longer.
- One seizure occurs right after another without the person regaining consciousness or coming to between seizures.
- Seizures occur closer together than usual for that person.
- Breathing becomes difficult or the person appears to be choking.
- The seizure occurs in water.
- Injury may have occurred.
- The person asks for medical help.
- Be sensitive and supportive, and ask others to do the same.
If you know the person personally, sometimes it is helpful to ask before a seizure occurs what they would like to have done in case they have a seizure.
First Aid for Complex Partial Seizures
I did not create the following video, but it does a great job of illustrating what to do if someone is having a complex partial seizure.
More First Aid Tips for Partial Seizures
The following is a guide developed by the Epilepsy Foundation for specific types of partial seizures. For more assistance, please contact your local Epilepsy Foundation.
Not knowing what to do if someone else is having a tonic-clonic seizure can be scary. Knowledge is power! These videos were not created by myself, but are courtesy of the epilepsy therapy project. They help illustrate what to do if you see someone having a tonic-clonic seizure. They also help illustrate what you should do immediately after the seizure.
Disclaimer: This video does show someone actually having a tonic-clonic seizure.
Find a Support Network
Why is this important? Even if you do not have a chronic illness, attending a new college or university is a big deal. There are lots of new things going on in your life, which is exciting. However, there are many new stressors in your life that you may not have had to deal with before. You will need someone to talk to when things get particularly difficult. (Not listed in any particular order)
- Medical Support – Keep in touch with your care team to make sure your health is in good condition during this stressful time. If you keep them well-informed, they can also give objective advice on whether you are pushing yourself too hard.
- Support Groups – Some universities have support groups to help students cope with a range of issues. If your university of choice has these, you should take advantage of them. There may also be support groups locally run by nonprofits such as the Epilepsy Foundation. This is a great way to talk about your problems with people who have similar issues.
- Friends – Whether you met them online or in person, a good friend will know what to say when you are having a bad day.
- Family – Some people like to talk things through with family members when a particularly difficult issue comes up.
This is not meant to be a complete list. If I missed any, please comment and let me know.
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