anyone suffering from PNES
 

My 30 year old daughter has been suffering with seizures for almost 16 months. Firtst diagnosed as panic attacks then they got so bad we had all the clinical tests done and all were clear and now it looks like we could be heading back where we started. I would love to know if anyone suffers from or knows someone who suffers from PNES. If so what form of seizures do you/they get? How long do they last? Do they persist so it looks like the person is in a constant state of mental confusion? Would LOVE to hear from anyone.

Hello denissage1 and welcome to NeuroTalk. I didn't even know what PNE Syndrome was until I looked it up, and I see it's very rare and very painful. I'm so sorry to know that your daughter is suffering.

Unfortunately I'm unable to help you with your question, but maybe if you were to post in our Rare Disorders Forum, some-one there may have some information for you.

Here's the direct link: http://neurotalk.psychcentral.com/forum2.html

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Welcome dinissage1
 

It is so "conincidential" that you mention this. I am 34 and have been having seizures for over 2 years. I had a VEEG done at Duke Medical Center and was dx with PNES. The neuro and P.A. explained alot about it to me. It is brought on by anxiety, panic, depression, past abuses and traumas (subconsciencely).

I am learning to deal with this. Neuro(Bio)Feedback is the best way to help reverse PNES. I jus started my treatment and they are estimating approx. 1-almost a year and a half. The treatment is very eye opening and it lets you actually take more notice of yourself and your feelings.

If you need more info, please PM me and I can go into further detail. But please tell your daughter that there is definitely HOPE.

Best wishes to you and your daughter.

Missy

Hi and welcome to NeuroTalk! Looks like someone here has already posted that they can relate to your daughter's condition....that's wonderful. I'm sorry that either has the condition but hope they can somehow help each other. :)


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Hi, Denissage! :Wave-Hello: Welcome to NeuroTalk!

This sounds miserable and I am also clueless. :( We have a search engine located in the toolbar near the top of every page. You may be able to search specific symptoms to locate pertinent discussions. I hope you'll find our community supportive and helpful. :)

Anyone Suffering from PNES
 

Hi there. Im new here to NeuroTalk. I actually found this thread from a google alert I set up for PNES. First I want to say to the person below you who wrote "PNE Syndrome". The "S" stands for seizures. A good thing to look up also is Pseudoseizures. But to be politically they have changed it to PNES, because the word Pseudo gives the impression that they aren't real seizures. They are real seizures, they just arent EPILEPTIC seizures.

My seizures have never been classified as a panic attack. When I seize, I go into a full blown seizure. If it were a epileptic seizure, they call it Tonic Clonic seizures, which in Epileptic talk means Grand Mal. From what people have told me, my seizures start out with me just stiffening up and collapsing, then I start to shake severly. The only differents, THEY say, is that my life isnt threatened DIRECTLY by the seizures. Apparently with PNE seizures, you mind takes over when you body is going to far. It wont let you hold your breath till you pass out or stop breathing all together, or like me, I bite my tongue on the side quite a bit, but because its psychogenic, your mind takes over and wont let you inhale blood into your lungs. I've inhaled blood once, but they said as soon as i did, my body tried to expel it by coughing. Apparently I left quite a mess for the cleaning ladies this time to clean up when i was in the hospital.

My seizures looked so much like epileptic seizures, that I had about 7 or 8 EEG's to prove it wasnt. The last one was when they finally caught me in an active seizure, and yes, stress, pain, all the regular things showed up on the EEG, but no epileptic activity.

I think the shortest seizure I've had was about 5 minutes, and got up after it was over. My longest however was as long at 6 hours, in and out of several seizures over those hours, and then, as you say, I am either so tired I dont even know whats going on and they can barely wake me, or I have a long period of confusion. Sometimes the seizures are so bad, that i'm out of comission for a day and need indosin (indocin?) for a few days afterwards, because of the muscle strain that I go through when i have the seizures. It don't know what you're daughter's seizures are like, but it does sound like she has Conversion Disorder of some kind. My diagnosis is Conversion disorder, Sub of Somatoform Disorder & Sub of Post Traumatic Stress Disorder with Tonic/Clonic Psyogenic Non Epileptic Seizures and Absent Seizures. I also have other psychiatric disorders and have spent some time in hospital on a mental health ward (which isnt as bad as they make it out to be on tv).

For this, I am on a very structured sort of therapy called DBT (dialectical behavior therapy). Look it up, there's lots on it. At all about learning how to cope with the memories or thoughts, BEFORE they happen. I've been given 3 list of techniques (long list) I can use to distract myself when these memories or thoughs are creepin up on you, but the first part of the therapy is learning to reconize those times, and thats really the hardest part. I rarely reconize when I thinking bad thoughts or when bad memories are flooding my brain. You should really ask about DBT.

Good luck with your daughter. By the way, i'm almost 32. My seizures started when i was 30. There is so much synisisim and so little understanding about it all, that no one is really learning about it. Half dont believe that the subconscious mind can make the body do physical things like PNES. There's lots of ignorance when it come to this stuff. The best thing to do is to do research on your own. I've shown doctors and nurses things thay didnt know about it, the first being that its no longer called peudoseizures.

Anyways, i'll shutup. I'm going on too much!

:hug:Angela

i had that diagnosis too
 

my pnes diagnosis came with a 4 day epilepsy monitoring session. my symptoms were never that bad, but my brainwaves are abnormal, and indicative of someone who is hallucinating. most of the time i feel quite normal, but under stress i can get panic attacks and have short memory blackouts. reduce the stress, reduce the symptoms. i am not at all convinced the diagnosis is correct and suspect it has a lot more to do with my sleepwalking disorder. it is like i fall asleep and then start acting out some dream while a minute ago i was awake. since they don't believe that i sleepwalk their diagnosis is suspect. the interesting thing is that i had a sleepwalking episode while being monitored, and they did not believe me.

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Hi, and welcome to NeuroTalk!

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help ... again
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Hello denissage1 and welcome to NeuroTalk.:Wave-Hello:

Anyone out there?
 

It doesn't look like anyone has posted in here for a while... but I thought Id try and see what I get. I am 25 and as of July 2011 I have been suffering from what they just recently diagnosed as PNES. My seizures look like Tonic clonic seizures, I have an aura or warning before hand for anywhere from 5 mins to 30 mins prior to the seizure or they sometimes do not result in a seizure.
when I seize it lasts anywhere from 15 seconds to about a minute, and I have on occasion had 2 or more back to back. Post seizure I do go into a "unconscious" state where I will roll my eyes and flutter my eyelids, Sometimes I struggle to breath, drool or spit up and I usually moan or babble(make sounds) a little. This state can last anywhere from 5 mins to 20 mins for me. I usually come out of it very confused and upset. I do not remember most of them, and the little that I do remember is usually the start of the process.
I have been having these seizures sometimes weekly. The two months I have had 10.
I was just given the final diagnosis 2 weeks ago that this is PNES. I was shocked and felt crazy, they had already been treating me with very high doses of anti-convulsant's.
I havent been able to work in the past year because I cannot find a company that will hire me based on my unreliability. So I have resorted to taking some clients from home. I cannot drive either. The worst of it is, I cannot seem to get any information on treatment for people with lower income households. My husband makes too much money for me to apply for Assisted income.... but Psychologists specializing in cognitive behavioral therapy are upwards of $160.00 a session!!!! The last Psycologist I spoke with I asked if she knew of any other options for me and she literally told me to check myself into the psyc ward at our local hospital. Is anyone else experiencing this lack of support??? I feel alone and trapped right now and am looking for ANY direction that anyone can lend.

Nice to meet you!!
 

baby_diver,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

You should see an Epileptologist (Dr. specializing in epilepsy) at an Epilepsy Center which are usually at University or big hospitals. Your need to cut out the carbs and starch foods because they will trigger seizures. Start keeping track of your seizures by writing them down on a calendar, by doing this the Dr. may see a pattern in your seizures. Get yourself on vitamin B12 500 mcg. once a day. Also avoid very bright light, like at a theater, the flashing can bring on a seizure. Just close you eyes and turn your head at that time.

Click on the fllowing epilepsy forum, there are some wonderful friends there to assist you.
http://neurotalk.psychcentral.com/forum11.html


Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Hi Lovely Aphrodite. I've been a part of this group for years now, but I don't think I have posted in it for years until I came upon an old file of links I had. How easily we forget about things when were not going through it anymore. Your story sounds so much like mine. I too was put on seizure medications, had about 10 eeg's until a "episode" was finally caught. Of course, brain activity was normal aside from panic/anxiety... natural bodily functions. I was diagnosed with Conversion disorder. PNES is a sub of conversion disorder/somatoform disorder. Its basically a part of PTSD, like the soldiers go through. They see things that bring back haunting memories, and they believe they are still there, and their actions can come out as violent behavior, depression, or seizure like activity. That's what PNES is. The last time I wrote on this question was in 2008 and I was still in the middle of my horrible experience with PNES. Amazingly enough, I can tell you, I have been able to move past it, and I haven't has an episode since 2010. Being in Canada, especially in Newfoundland, means I've been very lucky to have free care through community support. I have a psychiatrist, who I don't pay for and who works in the hospital on the psychiatric floor where I spent so much time. I have a psychologist provided through the community mental health center (I was lucky enough to get the most qualified one. Most were counselors, but I have the certified psychologist, but the counselors are mostly just as good). I don't pay anything for her either, but there was a 6 month waiting list to get into the program. We do cognitive behavioral therapy, set task's that I strive to do, but it dont always work out. We did manage to work through my PNES, but let me tell you, it was a lot of hard, exhausting work. Its was talking about past issues that came up during my episodes. It was figuring out what grounds me, so that the episodes wouldn't happen. I can tell you some of them for you to try. Grounding techniques are just basically what is sounds like. Something that keeps you grounded, and doesn't let you spiral out of control. Some techniques I learned are 1. place your feet flat on the floor and look around the room you are in. Pay attention to everything in the room. Note it all in your head. Count books, or dots on the ceiling lol. Whatever keeps your attention on the here and now, and not what causes the episodes. 2. Find your favourite smell, and take a little bit of it everywhere with you. When you feel it coming on, take it out and smell it. Think about memories aroound the smell. What I did was print off a picture of an orange and a picture of lilacs, and sprayed each of them with the scent or oranges and lilacs and put them in a little envelope in my purse and in my house. When I start to get that feeling, I pull them out and sniff away. 3. Get something that distracts your hands. I have those little magnetic balls that are awesome to play with in your hand. You can squish them, try to make them into objects, or make them into the shapes they are made for. 4. Make up a CD or play list of your favourite uplifting music and play it when you feel something coming on. 5. Make a small album of your favourite pictures. It doesn't have to be ones you took, but can be ones from online, just something that cheers you up, relaxes you. 6. Get an exercise CD and work it out. Exercise your *** off. LOL. I have a "Walking dvd by Leslie Sansone and its the best and easiest dvd but still makes you sweat and give you a chance to work your way up in levels. Or, if you can, find someone who will go for a walk with you. Don't focus on not having an episode, focus on everything around you. Take your camera with you and do some snap shots. Have a funny conversation with your walking buddy. Then if you start to feel comfortable, start walking on your own when you're sure you wont have an episode. The one thing they say about these episodes is that you can't hurt yourself the way you can when you are having an epileptic seizure. That during an epileptic seizure, your brain is firing of all different ways, and actually forces your body to do things that it shouldn't be doing. Like peeing your pants. Banging your head on hard things. Continuously biting your tongue. Holding your breath till you become cyanotic. Now I've bit my tongue, but it was only when I fell, I didnt continue to do it, because your mind isn't firing off telling your body to do the wrong thing, is a psychosomatic seizure, so your body wont let you continue to do what its doing wrong. I've banged my head, but again it was just when I collapsed at first, and didnt continue to do it. They say people who have PNES shouldn't have their licences taken away, because your mind wont let you go into a seizure when your driving. They did research on it. Same with holding children. People with eplieptic seizures need to have the fear of holding a child, because when they seize, they could drop and hurt a child, but people with PNES, their mind, without your control, wont let that happen.

There is one thing I can say. I wouldent suggest going to the psychiatric ward of a hospital, because the nurses are VERY V E R Y cynical when it comes to this disorder. You will have some nurses that believe in it, but most will believe you are trying it to get attention. If you do decide to go in there, do some research on it on the internet from well known medical study places, print it off and make sure to show it to your psychiatrist who will handel your case while you're in there, show the head nurse, and give it to your assigned nurse and kindly ask her to bring it into their shift change meeting so she/he can let the other nurses know the information. Don't let them keep it. If you find the nurses aren't taking it seriously, make sure you or a family member takes it up with hospital administration. You're psychiatrist who recommended you go into the hospital should be able to give you a list of support in the community, if he can't, i would find another psychiatrist. I did need some of the medications I was on and still use some of them today, like clonazepam for anxiety, but you need to get off the seizure meds, they are doing nothing for you. But follow your doctors rules, cause just dropping them can bring on actual REAL seizure activity. If you have a family doctor, ask him for recommendations to community support/counselors. If none of them can help you, you will have to do it yourself. Yellow page "Mental health Services" in Edmonton. I just did a search and there is a TON of places to call. The main one I would call first is "Canadian Mental Health Assn Edmonton Region" & "Canadian Mental Health Assn Alberta Division". They will be able to tell you anything and everything you need or want to know or direct you to the right place to find out what you need to know. http://www.yellowpages.ca/search/si/...AB?showDD=true

There is always help out there. You just have to do the work yourself sometimes to find the help you need. I wish you the best of luck, and if you every want to talk to me, feel free to message me. APeddle:D

PS. Just a little info on financial help. There is something called Canada Pension Disability. I am on that. Call HRDC or go online and get information on it. What I had to do was get my psychiatrist and family doctor the reasons why I couldn't work and fax it into them. There's a lot more to it, but they will tell you everything. It doesn't only cover physical disabilities, but also mental disabilities, which PNES, anxiety, depression, bipolar, ect, ect, IS!! http://www.servicecanada.gc.ca/eng/i...licant.shtml#b