Other Seizure disorders in ptsd

[Me Myself and I]

Hello,

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 ...

 

[Lunada94]

Wow...my husband has severe PTSD and developed seizures about 2 years ago. He's had about 4 of them in the past 2 years. They are grand mal seizures and happen when he is asleep. So I don't think they would fall under the pseudo-seizure definition. When they first developed he was under a lot of stress. We recently just came through a very terrible tough period with him dealing with his PTSD head on, but no seizures until last night. Things have been much better with his PTSD over the past 3 months so I was surprised by the seizure. But now, thinking over this idea of "hot spots" in the brain, it makes more sense.

I believe his brain is damaged by the PTSD and as a result of the damage he has developed a seizure disorder.

 

[Lady Vet]

He's had about 4 of them in the past 2 years. They are grand mal seizures and happen when he is asleep

From the research I have done on this topic, the frontal lobe seizures very often occur when the person IS asleep. And "pseudo-seizure" is terminology that is no longer used, as it implies they're not seizures. I don't know what's causing your husband's seizures, but the ptsd-induced seizures are very real. Good luck. :)

 

[Lunada94]

Thanks! We are pretty convinced that his seizures are PTSD related. They match nearly every symptom.

 

[pumpkinpie]

Twenty years ago, I was seeing a psychiatrist who I had asked to do everything he could (short of hypnosis) to help me remember an event from my childhood. We just talked, but not long after starting it, I had a seizure.

I had never had one before, and have not had one since. It was a true epileptic seizure, though. It was witnessed by a secretary at work and was a generalized tonic-clonic seizure with a post-ictal period (when I was sleeping and confused in the ER afterwards). I had retrograde amnesia (the previous 2 weeks) that never improved.

My EEG, done that day, was abnormal, and it was still abnormal 6 weeks later ("sharp slow waves and generalized right hemospheric spikes") so I was started on phenobarbital and was not allowed to drive for a year.

I never had another, despite being taken off the medication, and years later, my EEG was normal.

I have not heard of the type of brain scan. I remember from discussions at the time I had the seizure, it was known that PTSD was associated with EEG changes - but I haven't ever been able to find out what the nature of those changes actually is.

I have a younger sister who was exposed to the same environment as I was growing up. I know that she has complex PTSD but she has never acknowledged it, preferring instead to confuse the picture with drug abuse and blame her symptoms on drugs, medications and medical problems which include epilepsy.

She did have febrile seizures as a child. I don't know what kind of evaluation she has had for her adult seizures - she's a bit secretive about it, and I wouldn't be at all surprised if they are psychogenic, especially because at least one occurred in the middle of an emotional scene.

I'm aware that pseudoseizures or psychogenic non epileptic seizures are real seizures. Also - temporal lobe seizures are true epileptic seizures with the accompanying EEG abnormalities, and although people who have temporal lobe epilepsy are often emotionally "unstable", their seizures are not psychogenic.

 

[Just jase]

I just want to say THANK YOU for this post/forum. I have had seizures since being a teenager. Despite injuries sustained over the years and witnesses to the seizures I have not been diagnosed as an epileptic because of contradicting EEG results. I'm sure you may be able to understand the frustration when a Dr seems to be telling you that there is no evidence that you have fits when you know you do. Reading this made me cry! I can't believe my Dr has not made this connection.

I'm not a trained Dr but have, through my own investigation now, found an explanation. I'm now in my 40s and have discovered I have P.T.S.D I am currently undergoing a formal diagnosis. I don't know how it will help but knowing alone is a massive relief because it felt like I was going mad sometimes. It effects everything, my relationships, confidence, self esteem and my ability to function on a day to day basis I suffer with anxiety, Insomnia, when I do sleep I get nightmares and then there is the depression and mood swings, the list goes on. Again, thanks for sharing.

 

[lightfoot]

HI, I was diagnosed with severe PTSD 2 years ago, the psychiatrist said he thinks I've had it for 23 years which does kind of fit, anyway around 20 years ago I had a few seizures which were unexplained. Since then I have a new doctor and started having seizures again just over 2 years ago. My GP said he thought they were down to stress but they got so bad I was constantly having seizures during the day, 100+ I had loads of different medication, went to neurologists, nothing, no change, I lost 5 of my companies because of this.

Now they say I am having non-epileptic dissociative seizures due to extreme post traumatic stress disorder, a hell of a thing to repeat when you need to.

I have been treated like dirt and called everything from a loony to a dragonfly by the local A&E and have even been beaten up by police while having a seizure, leaving multiple wounds including footprints on my body. I have long lasting conditions including nerve damage after this but the worse thing is it has made PTSD worse.

I have since heard of others suffering PTSD experiencing convulsions/fits/seizures or sometimes as at first in my case they were called episodes. I even used to call a male nurse mammy. I am much better now although not completely cured thanks to NLP and CBT, I am still on the waiting list for EDMR.

I also feel like I'm going mad, tried suicide a few times, nothing works, it seems with PTSD you just have to work through it, or so I'm told, there seems to be no answer other than and I'm sure you've all heard, your body or brains natural reaction to an un-natural event.

I'm sure you've all heard this and yes I think sometimes, OK yeah but then something else kicks in & I really don't know, Ive been hiding in graveyards in the snow, in the woods, anywhere but home & it just doesn't make sense to me.

I feel guilty for what I put others through & really try to be strong, then I don't know, everything's gone, there's a big void, just images, voices, noises & hell no one gets it.

I tried to answer this thread with an ok, your not mad or anything, that's normal, I have fits too and I end up with am I mad, am I crazy, is it really like the cllrs say, natural reaction to an un-natural event or am I really off my rocker like the coppers who are trying to cover for the ones who beat me up are trying to say

 

[Lady Vet]

http://www.asuemotionlab.com/wp-content/uploads/2012/08/Robertsetal2012PNES.pdf

This is a new link...2012 journal article...it's very helpful.

 

[Lady Vet]

Here is another one I found, also very helpful :)

http://www.ibcn.fmed.uba.ar/kochen_lab_papers/2006_[3]_Dalessio_PSYCHIATRIC_DISORDERS_Seizure.pdf

 

[Lady Vet]

no one gets it.

I get it...and I'm sorry that you are going through hell, but I do get it.

It's so very frustrating when the people in our world don't understand. I was recently told (by my music instructor at the end of a lesson), "Work on (blah, blah, blah), and no more anxiety, no more panic, stop using it as an excuse!" So I do get it.

You're not alone...and you're right about riding out the PTSD, but it gets easier the more we do it with intention. That is my experience. I'm glad you found the forum.

 

[Deb74]

Hi I'm new. I recently was at my dental appointment. The dentist administered Septocaine with Epi to numb the upper left side of my mouth, which is a normal procedure. I instantly felt a warm numbing sensation up the left side of my head. About 10-15minutes into the visit I started feeling anxious and my heart started palpating. The dentist said that is normal. About 25 minutes my arms legs and whole body began to violently convulse. I was rushed to the ER after five convulsions and suffer convulsions for about four hours and released home with a diagnosis of vascular head ache. The following day about 4am I started having seizures that resemble the convulsions. Three trips to the ER and four days in behavioral health, I'm told I have seudoseizures caused possibly by the traumatic event. Here I am now six weeks later and unable to work or drive. I'm wondering if anyone has had a similar experience? Do you think the seizures I have are from the trauma? I'm not getting answers except the dentist refusing to admit to any wrong doing.

 

[workerbee]

Hi there. I am glad to see I am not the only person searching for answers to the PTSD/ seizure combination.

I have been in therapy off and on since I was 11 years old, spending 4 years in a state mental institution for running away from home (I was trying to escape the abuse only the hospital "therapy" was not much better than what I experienced at home.) Finally...I was diagnosed with PTSD about 10 years ago, then with bi-polar, ADHD and a couple of other diagnosis attached to it. Something about changing doctors, each on has his or her opinion about what is wrong. I took anti depressants for a number of years, nothing really addressed the problems.

Benefited a great deal from CBT, DBT, TLC, I thought I had finally found the magic bullet to and wham August 2, 2013 I woke up in a hospital room, the last thing I remember was lying down to take a nap. I had suffered 6 gran mal seizures in the span of 2 hours. The first question I asked the neurologist was could the seizures be stress related, he answered emphatically no. The CT, MRI and EEG all came back normal, I was placed on anti-seizure medication and sent home. The side effects were horrible and I continued to have partial seizures. I had a seizure after returning to work while sitting at my desk, back to the hospital ER, changed anti seizure drug and told me to follow up with the neurologist. I had another round of multiple gran mal type seizures about 6 weeks after I returned to work the second time and ended back admitted to the hospital. This time they discharged me with instructions to see a therapist and changed the antiseizure drug and added an anti anxiety med and an antidepressant. I went to the mental health clinic and was placed in a suicide prevention group.

I finally contacted the epilepsy center at the teaching hospital about an hour from where I live. They admitted me for a video EEG, luckily I experienced several seizures while I was there. Diagnosis PTSD, recommended treatment...stop all antiseizure medications and see a therapist that specializes in PTSD and EMDR. The staff at the hospital even provided a list of therapists in the city I live in. I have started sessions with a new therapist after interviewing several and she believes I am a good fit for EMDR. I am scared, I thought I had addressed this all before, apparently there must be more. (C'mon I meditate, I walk 2 miles a day, I practice good sleep hygiene, I use mindfulness to stay in the moment and keep from ruminating.)

I am also frustrated, I feel like I suffered needlessly with seizures, almost lost my job as well as having my world turned upside down (not a good thing for me...I do much better with routine and homeostasis) because the neurologist did not look at the whole picture even after he was told that I had been diagnosed with PTSD previously. Hopefully this works I've been doing this dance for 45 years now.

Thanks for being here and sharing your stories.