Peer support subsequent to trauma contributes to full recovery

Post Traumatic Stress Disorder (PTSD) -- including complex trauma (cPTSD) -- is debilitating, breaking down the body through anxiety and stress, and it poses a significant suicide risk in sufferers. MyPTSD seeks to help and inform those who are directly or indirectly affected by these conditions through peer-to-peer support and educational resources.

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Seizure Disorders In Ptsd

Discussion in 'Other Symptoms & Disorders' started by cdinwv, Jan 9, 2012.

  1. cdinwv

    cdinwv Active Member

    I am curious to know if anyone else suffers seizures with PTSD? One of my psychologists who specializes in PTSD survivors states that the brain can have scarring of "hot spots" deep within the brain from PTSD only detectable in real time while undergoing a MEG brain scan. When these "hot spots" become inflamed it can lead to seizure disorders in individuals suffering from PTSD.

    I have never met anyone that has both a seizure disorder and PTSD. I have researched many documents, articles, youtube videos and such online but have not found a concrete link up between the two conditions or spoke with someone who has successfully under went medical evaluation to find the "hot spots" on the brain from PTSD that could possibly trigger seizures too.

    I do not currently have insurance or the funds to pursue my own medical treatment at the moment but I hope to change that in the near future. So any input that anyone may have on this would be very much appreciative. Thanks.
    Cashew, Ocean5, Louise1988 and 3 others like this.
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  3. LoveFeelLiveAGAIN

    LoveFeelLiveAGAIN New Member

    Hello there,
    Well let me tell you that you are not the only one, and there is support out there. Im not sure about an MEG (not familiar with), but i know a EKG and an EEG will NOT show these "hot spots" unless you suffer from epilepsy or epileptic seizures. They are called pseudoseizures, if you research google documents you can find studies conducted and more information doctors that expertise are in this area. A seizure which is epileptic is neurological, yet a pseudoseizure is psychological. Therefore when you take these tests there is no such sign of activity. In time pseudoseizures have been called "fake" for that exact reason. But they arent. Not at all. All that we can do is learn what triggers them and our Anxiety, THEN from there they'll slowlybfade. I have been seizure free for almost a year. Yet once our body, or in our case mind, has a seizure will ALWAYS be suseptable to them. A door has oened that can be shut just not sealed. Always know though, that you CAN live without for the rest of your life. So dont worry to kuch about the tests, because as long as you're not epileptic, it won't matter. STAY seeing someone:D, it helps me so so much. Positivity,.love,and acceptance got me through a lot. And knowing I wasnt alone or crazy. I hope the exact terminology helped and what i had to offer gave some piece of mind. You arent alone, it wass good to finally see im not either:). , hope, love, and brighter horizons to you. Sincerely Krissy
  4. LoveFeelLiveAGAIN

    LoveFeelLiveAGAIN New Member

    *live the rest of your life WITHOUT SEIZURES!
    SeanCharles likes this.
  5. cdinwv

    cdinwv Active Member

    Thank you for your information and what you have shared Krissy. I appreciate you taking the time to share with me about your seizures and your diagnosis. I do hope you are able to retain control and do not have anymore seizures. No, we are not alone in our diagnosis or seizures. I am too familar with the seizure terminology you used. As you are aware, all seizures and seizures disorders are different.

    If you would like to share your type of seizures and years of your seizures experience, we can do this. I have supportive buddies who have different types of seizures, diagnosis and origins of why they have them too. From 1995-2011, I was diagnosed with Epilepsy while enduring the standarized testings. In 2009, I was diagnosed with PTSD. In 2011, I was in an epilepsy monitoring unit and confirmed as having nonepileptic seizures. I went 4 years from 1997-2001 without seizures. Then they came back. I wish you luck.

    I should have better questioned this post. My main concern was if anyone had been through a MEG brain scan and their personal story with a MEG brain scan.

    MEG scans can prove scientific evidence that PTSD does exist deep in the brain with "hot spots". These "hot spots" will light up in areas where the brain is damaged or dysfunctional in real time scans because of PTSD. It captures information like a sonogram would from what I have read. It is the most extensive brain scan that money can buy and pay for. It looks into depths of the brain that other tests can not find in scans or other brain scans are capable of.

    MEG scans can also detect if these "hot spots or PTSD spots" get inflamed when triggered provoking inflammation or changes in the brain that can also produce seizures even tho, standardized epilepsy testing miss this in depth action of the brain where the problems occur. Seek out PTSD research on Google and you'll see what I mean or look up MEG scans for PTSD or seizures.

    Now, pardon me for saying this, but if seizures and PTSD could be officially diagnosed and scientifically proven in the brain causing changes of brain functions, then the typical symptom checklist doctors use and the standarized brain scans would revolutionize the medical industry for PTSD patients and seizure patients as well. It would also cause a frenzy of mayhem with insurance companies to pay for these high price brain scans too.

    This is my primary concern with a MEG scan. But if PTSD can officially be diagnosed by photographic images of the brain to prove PTSD and even seizures, I am sure alot of insurance companies would be floored and costs would excel beyond the roof along with doctor care. Patient Cure and treatment could occur more effectively and efficiently finding the origin than the symptom checklist they use now.

    I am not saying that people lie to get medical attention for disorders on purpose. But where I live in southern West Virginia we have many people getting federal funded benefits with financial monies and health care coverage for psychological conditions.

    If MEG brain scans could prove scientific evidence of seizures and PTSD, how many would it prove that are falsely getting treatment for disorders they do not even have? How many more could it help if these MEG scans can prove isolation of brain issues and the complications from it and proper treatment, therapy and healing could occur because they found the origin instead of simple checklists of symptoms medical professionals use now?

    I have spent many years researching any medical issues I have ever had to self-care and preserve my own life. If I would have always listened to doctors first and not sought support through my own research or from others that have been there and done that, I would not be alive now because of the medication roullette doctors have tried to use to "help" me which would have killed me with the harsh side effects.

    As hard as PTSD and seizures can be to learn to cope with, seek healing and therapy for, I firmly believe that without us taking care of ourself first and what works for us,it will be medically detriment to our own health as an end result. I have seen too many Abuse prescription medications and illegal drug abuse and even with my own mistreatment and medical disapproval because I do refuse to take a pill to cure me or go with the first opinion. I just won't do it and ask questions instead and seek out my own logical answers as I always have. This works for me.

    Medically, we have to do what works for us. Asking questions and seeking support works for me.
  6. lil_fighter

    lil_fighter Active Member

    I had a psychosomatic seizure which was PTSD related in October, it had never happened to me before and was really scary..I think it was around that time I had to admit something was wrong because I tend to get on with life and put pressure on myself to keep busy etc. That was the time when I had to stop and accept help. I knew straight away that it wasn't epilepsy..deep down I knew but i went through the procedure, saw patronising doctors, consultants, had scans, tests etc. until I was diagnosed with PTSD in December.

    The issue I have with seizures related to PTSD is not being taken seriously by those who's job it is to diagnose epilepsy and not being put into a box with ''s ok it's probably just a panic attack' well..Im sorry but convulsing, arms and legs uncontrollably shaking violently, feeling like you're going to me is not a panic attack. I've had panic attacks before and know how that feels..eventually they confirmed it was a non-epileptic seizure and the words 'you definitely had a seizure, there's no denying that' were strangely comforting after having PTSD symptoms for five years and feeling that it had all come to a head.

    At the same time, I maintain that a combination of a change of environment, or attitude, therapy whatever is better for the individual is more ideal than pills and I know myself better than some doctor who choses to patronise.

    I like this:

    SeanCharles, Lady Vet, Anna and 2 others like this.
  7. cdinwv

    cdinwv Active Member

    lil_fighter, I do hope you continue on keep on fighting to overcome too:) I commend you for seeking help and hope you find support and the care needed to self-protect from the PTSD, seizures, and panic attacks. One condition alone is horrible but to deal with all three, is definetely no easy task and does take a lot of work, self-care, support and research to help ease symptoms and the triggers and stay on top of making the most quality of life a person can.

    I agree with you about the doctors and medical professionals who lack to listen to the symptoms at hand. From what you describe, it is not a panic attack but indeed a seizure. Once a person suffers a panic attack, it is a world wind difference than a seizure and they are not in any way or form the same condition and PTSD only adds to the internal things on with a body and mind without doctors labeling something they truly do not know nor can not control or diagnose. That's my personal feeling of it of seeking medical assistance on many things.

    I have had panic attacks as far back as I remember too before PTSD was diagnosed and even seizures began. Mine begins with a racing heart, chest tightness, palms sweating with and without stressful situations or any thing to contribute to it. Feels like I am having a heart attack and still does when I occassionally have them. I learned to inner calm myself through it by taking deep, long breaths to help me breath thru it now. I still don't know why I have them. After a few emergency room trips, I got tired of being asked what I was on or what I took and being treated like I was a drug addict. This is with no artifical substance or illegal substance in my body but yet I was labeled or treated as such. No thank you. I have learned through the years with research to cut back on caffeine and any thing I consume like sugars that could increase my already hyperviligance personality:) I allow myself an extra cup of coffee on the good days and sugars and on the bad days that things are a miss, I cut back completely or stay away from it.

    I am learning more about my internal turmoil that my body and my brain are trying to eliminate of the years of stressful living, casting off the child abuse that still lives in my subconscious Memory and apparently messed up even my body functions. Stress, abuse, and trauma are very hard to understand even living with the repercussions from it and gracious knows, what it really does do to the mind and body that we do not know about.

    I just try life to the life to fullest on the good days and take it easy on the bad days. It's difficult. My gracious, my heart goes out to anyone who has a mental illness, has seizure disorders and medical circumstances that complicate and hinder life.

    I personally feel compelled to assist others and share the journeys of even the nasty and darkest of health circumstances and life's complications so that maybe we can all help one another. My greatest hope is that one day a medical professional will read what is written by patients and consider what limits would they exhaust or do if the shoe was on the other foot so to speak and they were the patient too. Best of wishes and healthy preservation.
    SeanCharles, Lady Vet and eslucky like this.
  8. eslucky

    eslucky New Member

    I'm so happy I have found this forum and particularly this thread. My husband started to have seizures about 7 months ago and has had them about every 5 or 6 weeks since. The first one began on a day he had the flu and his Vietnam War memories surfaced to an extremely emotional level. He had his first seizure while sleeping that night (they have all been while sleeping).

    He had a seizure Sunday night and then Monday while sleeping during the day. He is now experiencing "aura seizures" where things are usually very elated but today he has relived some Vietnam memories again and became very sad for a few moments.

    All testing (MRIs and EEGs) have shown nothing. He is coming to terms with the fact that he has PTSD and is going to try and seek help through the VA.

    Thank you so much for all of these very informative posts. Very helpful!
    SeanCharles and Anna like this.
  9. LoveFeelLiveAGAIN

    LoveFeelLiveAGAIN New Member

    Well ive asked around, and these MEG arent easy to come by. The few I was able to talk to sarcastically wished me luck. But hopefully I can get good referalls from my neurologists and psychiatrist and all my paperwork, then maybe i can get in to ucsf as trial maybe one day treatment. so thank you, it means so so much.. THANK YOU
    SeanCharles likes this.
  10. Anna

    Anna Guest

    I have experienced a seizure similar to an epileptic fit. This has happened on two or three occasions when experiencing emotional overload, normally during an argument with the abusive parent or my partner. I don't have it anymore because I can now control my emotions very well and have learned to control it. It was definatly psychosomatic for sure.

    I have a partner who when we argue does not stop when I cry and keeps on going and going. Now they have learned to walk away or to leave the room if I get upset or cry. So this has helped stop it as well.

    During the argument before we learned to deal with it, they would shout and shout. I would start to get upset, curl into a ball, put my hands over my ears, rock and shout "Stop it". They would continue. The pain in my head was extreme. Then I would shake and fall onto the floor and spasm. It was very very unpleasant and looked like an epileptic fit.

    Possibly when triggered, certain circuits in the brain overload and can cause a fit. Especially during a flashback or if someone is causing you extreme emotional anguish.???

    This sounds pretty much what I had. Thanks for the info :) I no longer experience them either since I gained control over my emotions.

    Really interesting to read this thread. Never knew it was associated with PTSD. Terrible what the mind can do to the body.
    SeanCharles likes this.
  11. Emilie

    Emilie Active Member

    I don't exactly know if it's the same, but I recently have been having issues with twitching and shaking after a dizzy spell, sometimes after a panic attack. Because of the panic associated I am fairly certain it's psychosomatic.

    My mother has had grand mal (diagnosed) real seizures all throughout my childhood. She also had a traumatic childhood and there's a possibility that she had PTSD but currently the consensus for her is psychopathy. There's a definitive link between real seizures as well as pseudoseizures in anxiety disorders, but no more than those with heart disease and the like running in families. Anxiety tends to leads towards many other issues in the long run. But also to consider is that an expected 20% of diagnosed epileptic people actually have non-epileptic seizures.
    SeanCharles likes this.
  12. ogster1234

    ogster1234 New Member

    Hi, I think it's best to start with my story. I fell off a trailer around 3 years ago. I fractured my skull in 2 places, temporal lobe. I went through the claim system ( by the way not the fastest route but probably the more private route) to which I went to see a neurologist who suspected I was suffering temporal lobe epilepsy or generalised seizures.

    I had an EEG and MRI. In the Video EEG during the breathing stage my body started to fit, I was fully conscious whilst this was happening and no EEG activity. The ones i had on a night time I couldn't do anything about they started the same way near enough everytime. Ringing in the ears (If you were to yawn you get a sound in your ear, but it was intermitant, fast. Faster than i can possibly do conscious) my body would lose control, sometimes I wouldn't move and just stare, sometimes they were painful like having an egyptian beetle crawling under your skin, pins and needles around your head or just at one side of my body on the right, FYI I hit my head on the right therefore the left should have been affected. I'd have them during the day, hard to distinguish but signs being staring, feeling a vocal cord in your throat which vibrates oddly when you speak, I wouldn't talk much sense after only noticeable that they happend after the look on a persons face when speaking to them.

    After the MRI and EEG results collected, my brain hadn't become damaged and more importantly the epileptic part. The conclusion was that I had suffered Post Traumatic Seizures (PTS) as a result of the fall and after a year they had just dissapeared. I now get something not too dissimilar but to me they are far too suttle to be seizures. I tried to describe them to a Psychological nurse who said I hadn't suffered a seizure? lol and I just had panic attacks! The last 9 have definately to me been just "night terrors" but the things as I described to the neurologist last year are different by far. He didn't understand and he gave me this excuse of they are real to you.
    SeanCharles likes this.
  13. ogster1234

    ogster1234 New Member

    I couldn't tell you about scarring on the brain is a cause, but it was mentioned in my medical report after an MRI. It stated "Most importantly no scarring" so that suggests to me it could be.

    Generally in my experiance after i fell wrongly on my ankle around 8 months after my accident there seemed to be a conflict between my bodies reactions and my thinking. My body started to become in shock but in my head i'm asking myself what's the general problem and how my body seemed to over react to the situation. Problem is you'd have to assume your emotions are correct and my body was reacting as though i had broken it. I ignored what my body was telling me and hey presto i went back to work fine.

    I'm in a similar position now, neurologist diagnosed me with PTS but the counsilor i'm seeing now doesn't reckon i've had any seizures, which is quite the statement when I spoke for 2 minuites describing them. He spoke so much crap about anxiety and panic attacks to appoint I ignored him. So now i'm going to have to pay stupid money to speak to a psychologist.
    SeanCharles likes this.
  14. My Healing Journey

    My Healing Journey New Member

    I had some seizures in my teenage years, they started around the time that I started remembering abuse I had blocked out in childhood..

    When I was a younger child I remember being at a disco with strobes and told an adult I felt like I was dreaming and felt sick, they just patted me on the head and dismissed me. I also remember blinding headaches as a child like migraines. My mum doesn't recall these but she has blocked out most of my life with her so it's not suprising. Then when I was about 13 I was at a party and a strobe went on and my arm started jerking with same dream like state before and throughout.

    Later on in my teens I had a time where I would convulse at the point of falling asleep, I even had 2 grand mal seizures where I lost consciousness and badly bit my tongue. I never had any brain scans or medication, I was told I would grow out of it.

    The interesting thing that struck me as it being related to trauma is the rapid eye movement I would get before an episode, I knew when I was trying to get to sleep when it would happen as my eyes would flicker as they do in flashback. When I became less stressed they stopped. I would say stress was the trigger for these convulsions. I have noticed in last 2 years how my eye movements speed up when I am stressed/panicky and I am just starting EMDR as it seems logical the connections between rapid eye movements and processing trauma.

    I haven't had a seizure for a good few years now, maybe it was a form of teenage epilepsy but I'm not sure. All I know is when I was sleep deprived or stressed they would come. They were real and I couldn't control my body when I was having them, very scary. It is worth noting that the first time was after taking ecstasy but many times was sober and the childhood occasions pre date any link to that. That is why I was never really assessed, they blamed it on drugs.
    SeanCharles likes this.
  15. Maggiemay

    Maggiemay Well-Known Member

    I know this is an old post now, but busy researching ptsd and epilepsy & this popped up.

    I was convinced my seizures were body flashbacks/dissociation/anxiety until was talking about them in more detail with T yesterday. She says I need to ask GP to refer me to neurologist as lots of my physical representations of ptsd could have a neurological link. I was very dismissive of this as had it checked out 5 yrs ago to find localised myoclonus in right arm & leg but no activity of eeg/ video eeg/ nothing on mri, just abnormality on EMG. Things have now worsened so T thinks it's worth being investigated as would make a lot of sense of current symptoms.

    I'm just worried. I know what's going on isn't my fault or within my control by worrying to think epilepsy, I've eered more on the side of pseudo seizures as semi conscious - screaming in head, know they're happening but can't stop them or access real world to ground self. Also although I thought investigations before said I wasn't epileptic, epilepsy is on notes under significant diagnoses :s very confusing! Need to know what consultants discharge letter actually said! :s

    T said it would also make sense of activity at night which has led to me falling out of bed. Am on diazepam which has had a noticeable effect on calming muscles as fall asleep, don't feel like literally fighting in my sleep.

    I guess all I can do is see what GP says next week & if he'll refer me - eek!! Scary!! :(
    SeanCharles and Lady Vet like this.
  16. Lady Vet

    Lady Vet Spirit Warrior

    I don't even know how to describe how grateful I am to find this site and this thread. I have been suffering (literally) for nearly 30 years with symptoms that I still don't think are being diagnosed appropriately. I am certain that what I am now experiencing is panic attacks AND PTSD related seizures. I have so many questions, but for tonight I just want to say "Thank You." I have tagged this thread, and will be back.
    SeanCharles likes this.
  17. Lady Vet

    Lady Vet Spirit Warrior

    I found this article about research done with seizures and PTSD in I'm going to try to upload it...I hope this information is as helpful to others as it is for me :)

    Attached Files:

  18. Lady Vet

    Lady Vet Spirit Warrior

    I also found this informational brochure about the connection between PTSD/trauma/stress and psychogenic non-epileptic seizures (PNES). Very helpful for me....and I continue searching for information as I journey through this crap. It's a PDF format.

    Attached Files:

    SeanCharles and therapybankrupt like this.
  19. therapybankrupt

    therapybankrupt PTSD Survivor
    Premium Member

    I have both PSTD and Seizure Disorder! We do not have " fits" and we are no longer called "Epileptics". Just saying!
    SeanCharles and Lady Vet like this.
  20. Lady Vet

    Lady Vet Spirit Warrior

    TherapyBankrupt...How did you get diagnosed? Are your seizures PTSD related?
    SeanCharles likes this.
  21. therapybankrupt

    therapybankrupt PTSD Survivor
    Premium Member

    The Doctors all claim the seizures are not related to PTSD but I still question it! The seizures started during stressful period of my life. I was in my late 30's.

    Over a year ago given a PTSD diagnosis. Many traumas since 4 or 5 years old have reared their ugly heads.

    I had long term monitoring several times. Ten to fifteen days stay. Could not ever record a seizure even though I experienced them while there.

    Only after being asked to put a cotton ball on my neck that smelled like strong medicine did I produce a seizure. Oh and they took me to a room with rubber floor to do this and recorded a first and last ever Grandmal!

    I am sick about this.

    I am going to seek an Eptileptoligist as was mentioned in your PDF to get to the bottom of this. Thanks for that!
    SeanCharles likes this.
  22. Lady Vet

    Lady Vet Spirit Warrior

    This is why this forum is so important...we can share information, experience, strength, and hope :) May we all find what we need! And please share what you learn (if anything). Blessings...
  23. FaerieJayne

    FaerieJayne Active Member

    I get seizures too, and I get very strange ones that no one can give me answers to. Nothing has shown up on tests etc, but I have severe ones... I'm completely unconscious. In fact, the blackness crushes me and while I fight it I try and remember who I am, what I am... don't even know if I'm a bug or an animal or anything at all and I even forget to breathe. One time I came to with an oxygen mask over my face. From an outsiders point of view looking at me having a seizure, it is a severe epileptic type seizure, and I scream. A lot. I sound like I am being murdered. Meanwhile convulsing, foaming at the mouth, everything. I also get smaller type ones where I just stare into space and drop what I have in my hands. I am on anti seizure meds and I have far less of them now, however, I think it is PTSD related.
    SeanCharles and ambrosiw like this.
  24. Lady Vet

    Lady Vet Spirit Warrior

    FaerieJayne...I have been doing a LOT of research on this topic, as I am not CERTAIN that my PTSD has evolved into simple, partial seizures. It will be hard to find a mainstream medical doctor who (1) will take your symptoms seriously, and (2) stay committed to the process of diagnosing correctly what is not easy to diagnose at all. But I think the journey for correct diagnosis can be an important don't give up :)
    ambrosiw and FaerieJayne like this.
  25. ambrosiw

    ambrosiw New Member

    When I was 16 years old I accidentally killed my best friend in a boating accident. Since about the time I turned 18 I started having these weird episodes where it would feel like I was about to die and I would have to concentrate on trying to make it go away. A battle of the mind I guess you'd say. Sometimes these episodes will make me sick to my stomach. Some of the worst ones are the ones I have when I'm asleep.

    9 years ago my fiance passed away from cancer. Not only have I had to watch my best friend drown and my fiance die a slow death, I have witnessed many accidents and other disturbing sights. But even more disturbing is how many times I have been able to avoid death myself! Like the time I drove off a cliff on Donner Summit during a blizzard and my truck lands broadside on the only two little trees sticking out of the side of the mountain about 20 feet down. An inch or two further or back and I end up falling to the bottom about a thousand feet below. This is one story of many.

    I had my first grand mal seizure about 6 years ago. The doctors finally diagnosed me with PTSD yesterday. I'm researching it in depth. I saw in the news about maybe a new treatment for PTSD, Depression and anxiety. It's in Science Daily! I tried to post the link but I don't have enough authority here I guess hehehe
    kristy91 likes this.
  26. Me Myself and I

    Me Myself and I Well-Known Member


    I'm 22 years old, and a year ago we had war in Libya (where I'm from).

    I remember that one day I was watching t.v following the news of the whole situation there, and all of a sudden I just didn't feel right.

    I was feeling very cold, started sweating, looked pale and felt dizzy.

    My uncle noticed that there was something wrong with me, so he went and asked for my mom to cone right away ... She did and took me to her room, where as soon as I laid down I started having very strong convulsions that lasted for about 15 minutes.

    At first we thought it was a panic attack, but the next day and the one after I had some as well!

    So we went to a doctor did an EEG and said that I was suffering from Epilepsy!
    I started a course of sodium valproate and kept on having it for a year and 4 months, noticing no improvements at all, instead things were getting worst.

    After we decided to come in England and check.
    And here was the chock!

    After doing an MRI brain scan, an EEG and some blood tests, they said it had nothing to do with Epilepsy and that I've been taking the wrong medicine for a year and 4 months. Instead I suffer from PTSD ...

    It is such a difficult situation to cope with! I can have up yo four attacks a day, and some last up to 2 hours.

    They can vary in forms and intensity, sometimes just the neck and head (moving it left and right), others my whole body shaking real hard, sometimes by arms and legs!! And so on ... I basically lose the total control of my body.

    They finally referred me to a psychologist, who said that it's gonna take a long time to cure, yet it can be controlled ...

    I didn't start the sessions yet, but I can't wait to get some professional help.

    If you got any other questions I'll be happy to answer ...

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