14 posts tagged “anxiety”

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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“It is definitely a daily challenge” – An interview with PTS member Holden

Posted January 11th, 2016 by

Holden Montgomery (holdenmonty), an administration support technician for the Air Force Space Command, was deployed to Afghanistan in 2010 and later diagnosed with PTS, depression, and anxiety. He joined PatientslikeMe in March 2015, where he’s been connecting with other vets and sharing how he copes with his conditions.

We recently caught up with Holden, and here’s what he had to say…

Tell us a little about yourself. What are your hobbies and passions? 

So I must admit that when I started with this journey after my deployment and home break-in/vandalism I didn’t really have any hobbies or passions. Since my only focus while I was deployed was to live until the next day, that is the mindset that I came back with and still struggle with, but I will touch on that later.

So the biggest thing that saved me when I was struggling the first several months before my first son was born was photography. I have a Nikon D5100 DSLR and I would go exploring in nature and take photos of whatever I thought looked awesome or beautiful. I have thought about doing that again here in Colorado Springs but when you wake up to Pikes Peak every day and it’s always there you tend to take the beauty that is around you for granted. I must admit though just about every sunrise and sunset is breathtakingly beautiful.

But lately, after I attended my first Soldier Ride with the Wounded Warrior Project towards the end of June of 2015, I really got into bicycling and that has become my main hobby and passion. It’s also kind of amazing how you change because I have started to notice that one of my passions is wellness. I know I need to work on my own personal wellness but I have started to be more passionate about wellness in general.

In your profile, you mention dealing with anxiety and depression in addition to PTS. What are the challenges of managing three conditions?

So even though I was initially diagnosed with PTS in 2011 and anxiety in 2014 it wasn’t until I spent a week at a behavioral health clinic in the middle of June of 2015 that I was diagnosed with all three. But being diagnosed with all three gave me some peace of mind. Well as much as you can with mental health conditions.

For me it seems like the cause of my PTS was several things that combined together. Between multiple different things from my deployment and then a couple months after I got back my home I was living in at the time was broken into twice in the same week. It seems to be very similar with PTS from what I have seen that people that have PTS tend to have anxiety and/or depression as well. It seems like what led to my diagnoses of PTS was kind of a snowball effect of different things, and it seems like PTS tends to be a combination of different conditions. For me it’s anxiety, and depression. That is what people tend to see of my PTS. My therapist that I have here in Colorado Springs told me that she sees me as having anxiety with no other symptoms which was rather aggravating because I knew there was other stuff. It is definitely a daily challenge.

I heard an analogy one time and I really liked it and I hope it doesn’t offend somebody but if it does I’m sorry but it has helped me with my PTS and stuff. PTS is like cancer, you treat it and work to get ride of it and once it is gone there is a lot of relief and you try to move on with your life the best that you can but in all actuality it seems like there is no 100% cure and that it is always in remission. There can be any number of different things that can happen and it comes back. Sometimes it comes back but is very minor and is easily managed and sometimes it seems like it comes back with a vengeance and tries to kill you.

What has your experience been like tracking your moods, quality of life, and PTS symptoms on PatientsLikeMe?

I have really enjoyed tracking my mood and quality of life when I make sure to update it regularly. It may sound kind of weird but when I put how I’m feeling that day or in the moment with a small description of what is going on then somehow I’m not able to lie, or make it sound not as bad. I’m blunt and sometimes brutally honest. Which is really nice and refreshing since I tend to lie to myself about how I’m feeling.

I know there is a way that you can print out how you have been doing to bring to your therapist but I haven’t actually done that yet. I guess I am still trying to tell myself and the world that everything is ok and that there is nothing going on with me until I can’t stuff my emotions anymore and I explode. I guess I’m still afraid of that stereotype that society has drilled into me that if you have mental health issues then you can’t be trusted around “normal” people.

 You mentioned journaling as a way of handling your anxiety. Do you have any other coping strategies for people with PTS, depression, or anxiety?

I really enjoy journaling. It’s kind of like another way of the whole mood tracking and quality of life tracking. I can’t really lie when I’m writing it down.

I did run into a little bit of a big question. I filled up one small notebook that I used. It’s small enough that it can fit in my back pocket so I keep it always with me. But then there is the thought about what if somebody gets a hold of it and uses what I wrote against me or reads it, what would I do? So I thought about burning it or shredding it so nobody would ever be able to read it. I talked about it with my therapist and I wrote a small disclaimer in the front cover that basically states whatever is in here was how I felt at the time and I have addressed how I was feeling have resolved it to the best of my ability.

But anyway bicycling has been my biggest go-to besides journaling. I have created a coping card that is small enough to fit in my pocket which would help if I actually kept it on me and looked at it constantly. But some of the things on it are talking with trusted individuals which unfortunately seems to be growing smaller and smaller. But anyway walking, deep breathing/quiet time, looking up inspiring quotes, reading my Bible, listening to music, taking pictures of nature, take a shower, use my stress ball, and getting to my safe place, and thinking, which might seem weird but tends to be in a tree. I don’t climb the tree but I find a pine tree that is full enough that if I walk far enough into it nobody will be able to tell that I’m there. I guess you could say hiding from the world and thinking.

What has it been like connecting with other vets on PatientsLikeMe? 

I have really enjoyed connecting with other vets on PatientsLikeMe. But I must admit more importantly than connecting with other vets is connecting with other individuals with PTS/anxiety/depression because even though everybody has their own story, you can end up in a darker place if you start comparing stories.

For instance when I was deployed I wasn’t allowed off base because I was an IT guy and kept the network for my squadron running and computers running. But with an accumulation of events while deployed and after my deployment I have been diagnosed with PTS but one of my best friends that I met here through the Wounded Warrior Project has a spinal cord injury, traumatic brain injury, and PTS from being blown up when he was out on a convoy in Afghanistan. He is worse off than me and I used to tell myself that he is the kind of person that deserves the help that I receive because he has seen and been through some much worse stuff than I have.

I don’t have a spinal cord injury, or a traumatic brain injury. But we help each other, I share with him some thoughts that I have that I must admit I tend to be ashamed of because they aren’t the kind of thoughts that I would normally have had before everything and more times than not depending on the situation he has had the same thoughts or if he was in my situation would have the same thought, and we challenge it together. Just sharing how you feel with another individual that might be feeling the same way or something similar no matter how different your stories are is a really powerful thing. So really the biggest thing is just the fact that you are connecting with somebody that has a similar diagnosis. Really, diagnosis doesn’t even really matter— just somebody feeling similar to you. Somebody that you can relate with.

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