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gretchen1

PTSD due to epilepsy

3+ years ago myself and someone I love were victims of a violent crime. I posted it here in detail once and don't really want to repeat it. Over time I developed an emotional condition called PTSD or Post Traumatic Stress Syndrome and have been in treatment for it. Recently I changed therapist because I moved and felt I needed fresh blood in helping me, I was stalled out. I sought someone who specializes in PTSD and for me only I stress, I'm finding that my PTSD overlaps with the trauma I had 3 years ago plus my emotional reaction to being diagnosed with refractory epilepsy and all those ramifications, changes in my life from epilepsy diagnosed about 8 years ago. I don't want to go thru my own personal fine points but I find this very interesting because there are definite signs and symptoms of PTSD and often I see threads of people complaining of these very symptoms.

So I've done some research and found there has been extensive studies on cancer patients, the largest study I found have developed PTSD due to diagnosis of cancer. They have psychological shock reactions from their diagnosis of Cancaer. This is important for all of us to know in a way because the article also said that in the US 25% of the population will develop cancer in their lifetimes, which doesn't mean all those people will die, or develop PTSD due to cancer diagnosis. Other diseases were also listed in other articles and I noticed many (most?) of them were syndromes or diseases that either dramatically change our lives or are terminal or the person had a significant emotional reaction to a physical change of their perception of their physical image (such as scars, unwanted tatoos, baldness, short men,tall women, amputations, the list was endless) or any severe life change. One article discussed PTSD in couple's who have multiples (twins, triplets etc) particularly for the men. That would seem a happy event but think of the stress of suddenly having 3 or more babies, usuallyl mulutiples are premature so first all the health/mortality issues, changes in marital relationship, supporting them, thinking about how their expenses will rise in the future and maybe the husband/father makes $25,000/year? To me that'd be a little stressing long term. Such as, one article stated if you want to dig that far back some men have a mild to severe shock trauma reaction to baldness. I don't know if one of my brother in laws has PTSD over baldness but I do wonder. His ticker is shot, and I mean shot. He walks across the room and he's breathless and pale. Never mentions it. He is obsessed, apologizes, talks endlessly with obvious embarrassment about his "thinning hair". Thinning? He probably has 5 strands of hair but I don't care which isn't germaine, obviously it bothers him more to be bald then to be half dead from heart disease. I'll even ask him about his heart and he'll throw it off and say he feels fine. He won't spend the money on a cardiologist co-pay but he's spent thousands on hair implants that infected and had to be removed, the worst rug I've ever seen and many hats. He's not avoiding the topic of his heart he'll discuss it if asked, briefly, he's not in denial, he's learned to live with his bad heart but he can't get passed his "thinning hair". I won't go into specifics why I think that, but I'm sure he is at the least excessive about his bald worries versus his dying heart. I get so sick of 1/2 of our conversations he's talking about his "thinning hair" while my husband still has a very full mane of hair which also always creeps into conversation between two men who obviously love each other unless - the hair topic comes up. My toes curl. Obviously it is a huge issue to his brother. I've never understood it, maybe I do now. This has been a 21 year ongoing conversation too. If that seems funny or unbelievable how many advertisements do you see on TV for male pattern baldness? At times it feels like every 4th commercial. Someone is making a buck on others that are at the least very concerned about baldness. Trauma due to self image change? It's possible because a woman who has a hysterectomy, which doesn't show but also can mean to many women maybe deep down their worth dropped, self image changed, they can no longer produce no matter what their age they feel a lot less a woman, or important. Any body part removal seen or not has long been known to carry the potential of creating severe depression in men or women of any body part loss, the potential exists. I learned that in nursing school 30 years ago. One article even mentioned PTSD with enhancement plastic surgeries where people looked different after surgery which was their goal but then found they had deep grief, psychological trauma, from the loss of their former, familiar selves from breast enlargements, pectoral implants, cheek and chin implants, eye lifts, even liposuction.

Our significant others the articles I read can also develop mild to severe PTSD due to our diagnosis which it went on to say without tx, can fracture relationships and that again, is something I read frequently in threads and was one of our problems until we got some help.

Sigmund Freud, 100 years ago was the first person who put a name on PTSD. He called it Trauma Shock. In WWII it was called Shell Shock. Viet Nam war vets had Viet Nam Psychosis and many other names through the years. But all these names have the same symptoms. I won't list them all, plus the articles I read states PTSD can occur at any time after a diagnosis of a disease that significantly changes your life or threatens mortality. Onset with disease can be at any time after diagnosis, often occurs at the onset of treatment. Symptoms wax and wane which I've noticed in myself.

Predominant symptoms culled from 4 articles:
Insomnia - inability to fall asleep
Inability to stay asleep
Lethargy
Panic (or anxiety) attacks
General anxiety
Free floating anxiety
Agoraphobia (fear of leaving the house - I think)
Headaches
Visual disturbances
Lack of appetite
Over eating
Drug abuse
Alcoholism
Over reaction to events
Misinterpretation of social situations
Brief periods of mania
Periodic and brief paranoia
Feelings of Grief
Anger
Depression - a biggy
Grieving
Inability to process diagnosis/tx plan

I've read so many threads with many of these symptoms on them, plus I've experienced many myself and too in me as these articles mention these symptoms wax and wane. I've read many reasons for many of these symptoms by posters, plus I've asked doctors I've seen, I've read what other's have been told. I've also seen many of us have been treated for some of these symptoms with different modalities and varied results. The American Cancer Society's site states that they are now considering every cancer victim could develop PTSD and that's to be part of the physician assessment every time that patient is assessed since it can occur at any time after diagnosis. I know for myself I have read so many times how depressed people are after their diagnosis of epilepsy. I probably was too but the predominant feeling I had I think was puredy shock, for 3 years.

PTSD is not considered a mental illness, well I should say depending upon who you're reading, although it's DSM code would indicate it is but "mental illness" carries such ominous and frightening thoughts to those who are not familiar with all the facets of what is considered a mental illness, things like PTSD gets a dirty rap. Tourettes is in my family, two incidences. I can't believe how many people think by it's bizarre symptoms indicate mental illness but it's not. It's a neurological problem. OCD or Obsessive Compulsive Disorder has symptoms that to some may seem like mental illness but it's not either. It's treated by a neurologist with neurological medication. There are 3 incidences of that in my family too and my family gets a bad rap from these things through prejudice, assumptions, misinformation. One of children who has Tourettes spent 1/2 of his school years in the Vice Principal's office or out in the hallways no matter how often his doctor visited and explained - Tourettes is a neuro disease and he can not help what he does. SLAM. Too bad for my son. At times I wondered if he really needed an education. I was never so glad for any event as I was when he graduated out of public school. He was HIT three times by the same teacher, hard, leaving bruises and broken skin because of his Tourettes symptoms. He is, BTW, a school phobic to the nth degree and he did earn it. He also has epilepsy.

Then I ask this? How many of you have had someone misdiagnose you as having NES sz's that aren't, reacting hysterically in their opinion to something as frightening as a sz in your child, or having a neuropsych eval that was hop scotched thru and stamped - NUTS! I called my first dork neuro one night sure I was having a stroke and he said he'd see me in his office in the morning? Obviously, he was busy, didn't want to bother (which is probably the answer), or didn't think I was wound too tight and I'd seen him TWICE at that time, neither time was I conscious. OR, how many of you have wondered before you were diagnosed if you were nuts. I certainly did. I'm smelling things that aren't there, feeling water running down my leg - that isn't, Alice in Wonderland will sure make anyone question your sanity and if that doesn't do it try a trip through pre-ictal fear or a Jamais Vu and those last two are "only" simple partials. I HAD to be nuts no one else had those things.

One of my children has technically "mental illness", more than one DSM code too. She functions at a higher level professionally and personally than most people I know plus she has epilepsy, asthma and ADD (one of her "mental illness" DSM codes). We've probably all had anxiousness or depression, certainly sleepless nights from stress and those things have DSM codes too. Guess where? Honestly I feel I've handled my travails with epilepsy pretty well but when I'm chronically ambushed, injured, have lost a major portion of my income, my career, I'm isolated, not only not allowed to work but not allowed to volunteer due to liability, loss of my LIFE as I knew it in a day? Then I'm told this IS for life? I find that at times traumatizing. I don't go screaming into the streets but I sure might have some anxiousness, depression or sleep problems - or worse.

As the therapist and I have worked together I can see I probably do have PTSD not just from the trauma I went through, but the trauma plus the epilepsy I was diagnosed with and still trying to deal with at the time all hit together with a big clang. It was overwhelming. I think too without the trauma I had, epilepsy has angered, frustrated me, so many things, I believe it'd be very abnormal if I didn't have some of the symptoms listed and there are a lot more.

I posted this because I found it interesting. I also believe it's an answer or partial answer when many of us ask - what's wrong with me and mention the above, or other symptoms I didn't list. I hear so many different reasons for instance why people have sleep disorder, which I have. We're all treated differently and so far I haven't heard the same reason given to any of us for why we have sleep problems, getting to sleep namely or staying asleep. If we're not diagnosed correctly, how can we get treated correctly. As one person said - PTSD is a normal reaction to an abnormal event. I've had that on my office walls since I got it.

I hope I didn't offend anyone. I wonder if others have thoughts pro or con. I have no idea what response this will get if any. I know I m ight be hitting some sensitive buttons and if so, please try to see I'm not saying we're all victims of PTSD. I'm only saying other diseases and syndromes, etc having documented PTSD is a potential component of that disease/syndrome process. Why wouldn't epilepsy then. It's not a crime or a failure if you grieve over big losses in your life due to E. No one is a "bad epileptic". I'm very curious to see what, if any, thoughts people have on this. My suspicion is? This thread will be such a hot potato because of the "mental illness" stigma, which should to me never be in existence, I mean come on we're epileptics why discriminate about another syndrome, but still.....those are two dirty words to too many, scarey words for many.

Gretchen

Comments

Re: PTSD due to epilepsy

I just have a question: I had seizures as a kid (they have recently been coming back...ugh). I have gran-mal tonic clonic so I wasn't sure if anyone had this experience. Flash backs to the before/middle/after of your seizure? I've been having that as of late and it's been about...10-15 years later? So I am not sure if this is PTSD or something different. Of course, having a seizure of any magnitude has the possibility to be traumatizing. I am just trying to figure out what the hell to make of this.

You bring up a lot of good

You bring up a lot of good points. Not all of them are easy to deal with. Due to childhood trauma I already had PTSD. Finding out I had E certainly didn't help. I've read through the signs steps of PTSD and they are exactly what I went (still going through) when I learned I had E three months ago.

Please continue to share any info you have on PTSD. Even though people may not reply I think they get quite a bit of information from it. I did.

Thanks again.

Gretchen- As always, an

Gretchen-

As always, an interesting and informative post. With all the things that I have gone through in my life, I'm sure that I easily qualify for PTSD.

I don't think any condition, including mental Illness, should have a stigma attached to it. We were all born predisposed to something. As they say, it's all in the genes. Just think how little is known about DNA and mutations and how they do and will affect our lives at any time.

I checked off 19 items off of your list from various times in my life.

The isolation I am feeling right now, I know, stems from a childhood situation where I was put in a storeroom everyday of my summer vacation with a table, chair and a small TV at the shipyard where my mother worked. I was brought lunch from one of the workers everyday and was given the newspaper after he read it. From 9-5 every weekday for 3 summers, I was in isolation. Did I see it that way as a kid? No.

There was no money for a babysitter so I learned to draw on pads of paper that I brought with me and big boxes of crayons and then pastels, watercolors and paints. I thumbtacked then to the walls every summer and finally people from the offices took notice and would stop and praise my work.

That could have turned into PTSD. But it didn't. It turned into a successful career in Design. I knew what I was going to do with the rest of my life from about age 8. Do I blame my mother for the isolation or do I praise her for my career?

For years I had social issues making friends because I didn't play with kids or go to camp. My friends were all adults. I did'nt know how to play. I isolated myself and would go sit in a corner and read a book or draw. I longed to be asked to play jumprope or play all the yard games that everyone knew but me. I was labeled shy and introverted but talented.

So did I turn the stress around or did it make me part of the person I am today? I am addicted to TV, just to keep on, so that I am not alone. I don't really watch it, it is comforting to me. Art is still the essence of my life. Had I looked at that little closet of a room that I had to stay in for 3 summers of my life, would it be prison in my mind or an awakening to my future?

Thanks for writing your post for it made me stop and think of the past and why now I and reliving the fear of being alone all the time.I have always tried to have empathy for people in need and never judge them because no one knows what another peron has experienced in their lives. Recently I took medications that made me someone who was far from who I was just last year.

I spent a year developing a network of friends on this site. During a period of drug withdrawal, I was rejected by some of those friends and asked to leave their group. All those old feelings of not fitting in or rejection and isolation came back. That's when I finally realized that no matter what tramas you go thru in life, you have to turn them around to your advantage and find a new path and a new place. You can't go back but you can go forward because in the end, you have to be your best friend and advocate in life.

Hugs to all
Joan

Re: Gretchen- As always, an

I loved both of your posts, thank you for commenting. I'm really curious what people think. I'm very open minded about this. My new therapist is going way back to my very early childhood, progressing forward. My initial thought was, I'll be in therapy for the next 100 years. But as Joan said she see's situations in my childhood that could have resulted in long term PTSD but somehow I coped. It's a memory, maybe even a negative memory but not a traumatizing memory. But not all of the events that happened in my childhood escaped. Because of a few similar things that happened to me as a child that I complained about and adults blew me off, a child wouldn't understand, and then felt powerless. With several of these things happening, it became one event or more precisely put I learned avoidance of certain really nonthreatening but threatening to me situations. I didn't even realize I did. But Joan when you said you were shut in that room? I literally broke out in a sweat. I was tied up, chains with a dog collar on, pulled around by a leash for 14 hours. The feeling for me now of being trapped? Is overwhelming. If I'm not in my home that's clinically called, or could be, hypervigilance. Sometimes it's just a little bit there. Times I've been in line in the grocery store, start feeling very trapped, that might lead to an aura, I start worrying about that, and I've many times in any kind of line with unknown others,maybe dangerous others I start wondering, behind me, dumped my cart and walked out almost shaking with relief. I don't know who is behind me,I get afraid to look, start worrying about them. I get hypervigilant.

I started getting myself in a lot of trouble,everywhere. In fact last week I had to go to court over something I did. I got a mild slap on the hand. I think the judge felt I did the right thing, although it was unlawful but the point is I did it in a furious rage. I found 2 dogs in a locked up, windows up car,on a v ery hot oday, in the sun, and they were half conscious from the heat. I couldn't find their owners. So I took a tire iron and smashed one of the car's windows out. To save the dogs. Thankfully in my bouncing fury I did get some shop keeper to take Polaroids of the dogs before I smashed out the window and he was my witness. Or my bacon would have been cooked. I can not do things like this. Why do I? Because I'm still madder than hades at what was done to me, frustrated, traumatized and I feel the same many times about getting epilepsy. As I told someone it is totally unfair I got this. I don't want someone else to get it, but I don't think I should have it either. I got E at such a bad time of my life. Well, when is a good time? I DO NOT KNOW. Try out - NEVER. Then I start feeling fingers of rage.

A lot of people have denial, incapacitating fears, panic attacks rolling one after the other, isolate themselves and I can have those things too, and do, but what is easily seen is my red hot temper that sometimes is puredy rage. I have said things that are absolutely horrid, and worse, aren't even appropriate to the topic. I misread or gave it my spin, what was said that made me so mad or it could be something I see. I couldn't control my anger any longer and it was getting worse. I kept waiting for it to settle down, go away and I think most of the crises in my life I've handled well but not this time. I dropped out of nearly everything in my life not understanding fully why I was like this and getting worse. I expected people to understand but wondered if I would. So, I got better help, which is hard, but also I'm feeling such relief. It's also just plain interesting. There are many modalities used for PTSD too. One of them was "group". Imagine my hypervigilence ini a stuffy room full of people? I lasted about 10minutes after suggesting a pazillion times what a pretty day it was, let's all go outside. No was the answer and I couldn't stand it, left.

One last thing. It is fascinating to me about myself, but others I'm meeting that have this mildly or severely,acquired it from what they tell me, from events that are hard for me to understand why that would be traumatizing. Probably I'm getting part of the story or the tip of the ice berg but I really don't know. For instance one woman I met had a hysterectomy, no cancer, not even suspected. She was passed child bearing years. She has no history of psychiatric problems and her hysterectomy from benign fibroid tumors has collapsed her identity, traumatized her. I'm sure there's more than that but the very sad things is, I heard others discussing her so that she heard it. So now she's traumatized, has PTSD with all that accompanies that for her, and she's been devalued by her peers, as what happened to Joan. Just last week a technician called me to schedule an appointment with me for my husband. I was confused on what the date was, asked her, there was a long pause and then she said....don't you have epilepsy? I thought, where'd that come from? I'd had a sz in their office about a month ago. I told her I did and she said abruptly she'd only schedule the appt with my husband. Click. I was stunned. Then of course I got furious. I have epilepsy, which does not equal EMBICILE. I reported her but you know what? I avoid her now too. I'm afraid I might do something embicilic. It's like I said in aother post. Words are very powerful and can be like a bullet to the heart.

I'm just musing away here. Joan, Ramblin'? I'm sorry for what you've both been thru, are going thru. People with PTSD tend to hide. You both have courage, I want you to know I recognize it. I tried very hard to hide all of this and I did, from myself. That didn't work for me. It took a lot of guts for me to even admit it to myself. Again tho, why wouldn't I have it? It'd be abnormal if I didn't I feel now. I've lost a lot getting epilepsy. We were even homeless without a car a few years ago. I'm not unique in my feelings, but I can only experience what life dealt me. Finally, when I figure out how, I can grieve about it, quit the anger, and move on. That's my goal.

Gretchen

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