128 posts in the category “Epilepsy”

Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

Posted May 19th, 2017 by

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds of members report living with epilepsy along with depression and/or anxiety.

“I’ve had anxiety from my earliest memories,” she says. In her early 30s, she also began experiencing MDD. She was dealing with a move, very active children, and worsening migraines, pain and other symptoms.

“It was the perfect storm,” she says. Read on for more of her story, plus her tips for women dealing with multiple health conditions in their family.

My name is Ginny. I had 12 years of misdiagnosis, until I was appropriately diagnosed with epilepsy, psoriatic arthritis, major depression and anxiety.

In the middle of dealing with my own health issues, my son was diagnosed with epilepsy. I felt overwhelmed – extreme exhaustion beyond the norm for a mom and wife.

When I started Topamax, a seizure medication for my epilepsy, it raised my anxiety and I told my neurologist I had to have a depression/anxiety medication. While Topamax increased my anxiety, it also helped to lower my seizures and helped me regain my ability to think. Seizures were robbing my ability for complex thought. I still take Trokendi XR, a form of Topamax. Everyone’s response to these medications is unique, so talk with your doctor about how they affect you, especially if you have suicidal thoughts.

As a mom, I was unable to see how much my depression was impacting my parenting until I was on medication (Cymbalta) and started feeling less anxiety and depression. One month later I was traveling alone and I suddenly realized that I felt zero anxiety on the plane, elevator or city taxi – I felt freedom for the first time, ever!

“I realized my spouse and kids had a less than effective mother than they could have had during some of those years. I do not dwell on this since I cannot turn back the clock. I use this to tell other parents: I did the best that I could during those years – part of the time I did not even realize that I had depression and anxiety.”

Doctors and specialists were reluctant to diagnose me with depression. I was even placed on a depression medication at one time “to help with the migraines.” I was concerned because I did not want to be thought of as “crazy.” If my doctor had been more honest and said she felt I was depressed and I should try this medication, it would have been wiser. A doctor who can say, “sometimes depression also causes physical symptoms” – true fact – helps the patient to understand this and make informed health care decisions. 

“Being a mom when you have many physical and emotional issues is very challenging. I often put my children’s needs first. I got to the point when I knew I had to take care of my needs.”

When I did this, I knew I was doing the best for all of us. I could not take care of them if I was too depressed, too anxious or in too much physical pain. I teach this to other parents, at well.

My son’s anxiety was noticeable even at age 3. He was diagnosed with it formally at age 11, but not placed on medications for depression and anxiety until after his first two suicide attempts at age 15.

Sam’s mental health issues seemed intermingled with his epilepsy. They can be bi-directional, meaning they can occur before or after one another, according to Dr. Andres Kanner, who has studied how they’re related. Depression is the psychiatric disorder that occurs most frequently with epilepsy (affecting 20 to 50% of people with epilepsy, depending on epilepsy type). Learn more here. The suicide risk in people with epilepsy is more complicated. If you or someone you know expresses suicidal thoughts, please seek help through crisis resources like these.

Sam’s health issues taught me that we are so much more than a list of conditions. He taught me how to deal with – as well as how to advocate for – a person trying to cope with these life-and-death conditions. I learned how to speak to him and the importance of including people – a child, teen or adult – in decisions about their care.

I became an advocate at the national and state level so that our representatives could begin to understand what patients and families endure.

I found a program through the Epilepsy Foundation and asked if he wanted to apply to go to Washington D.C. to talk to senators and congressmen. He got in and we went. That began our lifetime odyssey.

People around the world learned about Sam’s life and death because others went on telling his story through the Epilepsy Foundation and the websites we went on. People had watched him grow from a little boy to a 20-year-old man. At 16, Sam used his artwork to help others with depression to find hope and help by creating Preventing Teen Tragedy.

I cope with my grief through continuing to help others. I had a non-profit for six years that worked with the Epilepsy Foundation. I was trained as a grief specialist. I use portions of Sam’s story with my clients at work as a Mobile Crisis family partner. I also talk to others online.

PatientsLikeMe has been a safe place for me to come and share, first while Sam was still alive. Now, having a safe place to come and read and talk has been such a great coping method for me. I cannot always share about my son fully in other places because people become uncomfortable. Sam died of suicide on his fourth attempt. 

“People forget that when a mother talks about her son, it is not about his death, it is about the fact that he lived. I have lost so many of my friends because they do not know what to say so they just stay away from me because they are not comfortable.”

Mental illness is not a weakness. Depression and anxiety are conditions of an organ in our body and should be treated as such. I can come to the website and know that others have answers to help me through the rough times. I do not need to weather this journey alone.

My tips for women and moms living with mental health conditions: 

  • Take care of yourself through a healthy diet. Depression may cause under- or over-eating. Do your best to work on changing how you eat.
  • Exercise, even when you don’t feel like doing it. I am 54 years old, work a 12.5-hour shift four days a week and do not feel like working out a lot of the time. I am adding in yoga, stretches, walking, and whatever else I can to keep moving. This helps all of my conditions.
  • Involve children in eating well and exercise. We used to kayak, play tag, walk and do what we could to stay active. When I felt moody around the kids I would tell them, “OK, it is time to walk the grump.” Before we would reach the end of the road, all of us would be in a better mood.

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Meet Ginny from the PatientsLikeMe Team of Advisors

Posted January 26th, 2017 by

Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy.  She’s also a member of the 2016-2017 Team of Advisors.

Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate and the support of others helps her deal with stigma:

What gives you the greatest joy and puts a smile on your face?

My first greatest joy that puts a smile on my face is spending time with my granddaughter! (She is 2 and the cutest girl on the planet by my biased opinion!). My second greatest joy is connecting with people using either my journey with chronic health issues, or my son’s and being able to help them. I often edit my son’s story a bit if I believe the way his life ended might cause more harm to them, especially my clients.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

People have pre-conceived ideas about depression, anxiety, and seizures and even when I try to inform them, they often bounce back to their former thinking. This causes, not just an obstacle, but sometimes a mountain between us. I have had people tell me they are “afraid of me” because of my seizures. They had been told my seizures are focal, not convulsive. I do not fall on the ground and shake, yet, they are afraid, WHY? Ignorance. I have had relatives who have shunned me due to the diagnosis, later in my life. I lost friends over the diagnosis of depression. I believe in speaking out about the conditions because I do believe we need to be the changers of the world. I know that it is an enormous task. One of my son’s epilepsy doctors was also one who had some big prejudice about the disorder. I went to him after my son’s death. He had told me that I had caused my son’s stigma. I had asked him for many years “How? How was it that I had caused kids to punch my son in the head and ask him to spaz out?” The doctor never answered me.

When we talked after Sam died I showed him the picture of Sam and Tony Coelho on a magazine cover. I asked him if he knew who that was. He did, and smiled. I told him that Tony had told Sam each year when we saw him, “Never be ashamed to talk about your epilepsy.” I told this doctor that Sam did become ashamed because the doctor told him to be ashamed. I told the doctor I believe it is up to us to change the world about how they view those of us who have epilepsy. I treated Sam no differently as I treated my father who had diabetes as I grew up. He had a medical condition over which he had no control. This specialist then nodded his head agreeing with me.

I speak to people to let them know these conditions are medical. They need treatment like a heart condition, asthma, diabetes. It is time they are not suppressed, made to be ignored, or thought shameful.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

My depression can ease up on me like someone adding weight until I cannot carry it any longer by myself. Suddenly I realize I am crying more easily for little reason. I cannot do simple tasks that used to come easily. I thought I was doing well, but have slid back into depression. This is not the same as “sadness.” I want to stay in bed, but no amount of extra sleep is enough. Concentration can become more difficult. I can be grouchier.

When my I miss my seizure medications or have long migraines, I have focal seizures. I can sense a prodrome (aura) when a seizure is coming on. My brain is just not working right during that time. My words are not able to form right or come out correctly. This can happen with both my seizures and when I have a bad migraine coming on so I try to get home to be safe. I have a long warning time, typically. During the seizure my head can feel too heavy for my neck. I am not able to talk but I can sometimes hear what is going on around me. I can have tingling in my face and hands. I will usually sleep after. Even after I wake up I am groggy and my brain is not working at full capacity. Sometimes my vision will “white out” and l have been known to send e-mail during that time that make no sense. Apparently I kept typing even though I was in a seizure. Fortunately it was to a family member who I could explain what happened!

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become informed in your condition as much as you are comfortable with from reputable sources. Find a good support network whether it is family, a support group, faith group or whatever you can form. You will do better with support around you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has been vital to me to find people who understood what I was going through! When my son was first diagnosed, I was not on the internet so it took a while for us to connect with others. When I did it felt like a miracle! Once I connected I have wanted to stay connected. When I was diagnosed a few years later I needed to speak to people about my own connection. These have been my friends for so many years!

Recount a time when you’ve had to advocate for yourself. 

I have found a medication that would be better for me as I went into menopause. I had been at the American Epilepsy Society Meetings and learned about this new medication. I called my epilepsy doctor when I returned. She was pleased to hear about the medication and was more than willing to try this for me. It gave me a return to better seizure control. My doctor is very open to what information I have for her. I have had to fight insurance companies many times for my care and for my son’s care.

What made you want to join the PatientsLikeMe Team of Advisors?

I want to be able to impact others who have chronic health conditions in a positive way. I know that the online community was what got me through years with Sam. Sharing my experiences and passing it along to others my assist them in their journey.

 

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