Service Dog for PNES
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- čas přidán 7. 11. 2015
- A little more detail what my service dog does specific to my disability (psychogenic non epileptic seizures).
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Thank you SO much for posting these videos. I was diagnosed with non-epileptic seizures a few months ago and am in the process of getting a service dog. You mentioned that non-epileptic seizures must have something physical, not just psychological. I'm taking part in a study at Stanford University right now bout non-epileptic seizures and treatment for them. From what I've learned, service dogs can sense one of our seizures before they happen because of a change in our pheromones that they can smell. I have also learned from Stanford that many neurologist and doctors don't have very much knowledge on non-epileptic seizures, and therefore don't necessarily explain them to patients very well. Epilepsy seizures create one pattern of brainwaves during seizures, while non-epileptic seizures create a different pattern. They are very much a physical symptom. Sometimes (but not always) they can develop because of a trauma or stress, but that should not be a universal statement. Seizures of any kind can be brought on/made worse by stress, lack of sleep, etc. Also, some people have both epileptic and non-epileptic seizures, although each seizure is either one or the other. You may have an epileptic seizure on Monday, but on Thursday you have a non-epileptic seizure. This can be hard to diagnose be the doctors would have record on an EEG both seizures to differentiate them. Anyway...this got to be a much longer comment than I meant it to be. Sorry about that. Again, thank you so much for posting these videos. I find them really helpful.
+angelband1106 That's great that you are part of a study! If you learn more please let me know! I'm always interested in any new info out there! There is indeed so little known and so many neurologists themselves just don't know a single thing. I've experienced it first hand..
I hope all goes well for you and the service dog acquiring! Do you know where you are getting it from? Is it from a program or are you self training?
+Molly N The organization I'm getting my service dog from is called Alpha K9. Right now they are in the process of finding the right dog for my needs. I am so excited to get my dog! Alpha K9 does a lot of service dog training for veterans, but they also do training for other kinds of service dogs too. (By the way, Reid is absolutely adorable!)
angelband1106 wow
I was diagnosed with PNES last year and it’s great to hear that there are others who are living with it and moving forward with their life.
I was diagnosed with it 2021 I was only 15 I’m 17 now and in the process of training my 1 year old dog to my service dog
Hi. I suffer from PNES and have a SD as well. She really makes it so much easier to be independant. I cant stress enough the value of a SD in my life!
Fenyx Church I know! I would not be able to function without him! they are so amazing!
How do I get one?! 🥺
Bless you going through this. I remember them calling this 'psuedo ' when my familly member got it and it made me so angry!!!
Thank god that term is outdated now. It's so disrespectful to people suffering by making them feel like they're 'faking' their seizures or that the seizures aren't 'real' seizures.
Although the jumble of PNES, NEAD, Dissociative Seizures, Functional Seizures etc etc makes talking about them so confusing. I tend to stick to dissociative seizures so I dont hurt my head (no pun intended)
I was Really happy to see your video. ❤️ I have pnes and just aplied for a servicedog. And this was Really Nice to see. Thank you 🙏
Thank you so much I’m currently looking into get Service dog for my non-epileptic seizures and your videos are really helping me in my Journey!!
You are correct that there’s also something physiologically real
Thank you so much for posting this. Its old I know but I just got diagnosed and I am so appreciative to see Im not alone.
Hi, thank you for this video! I've had Dissociative Siezures for nearly 3 years and just decided to look into getting a service dog, as I'm considering going to college soon and need to be more independent.
This was super informative and your SD is so cute! Have a nice day :D
I agree same thing with mine if he can tell just from the way that I blink my eyes or something that I have an episode coming there's obviously something going on there. best of luck in your journey take care
I have NEAD/PNES (I live in the UK and we call it non epileptic attack disorder). I do not have a service dog, as i have many other conditions and getting a dog trained would be difficult. BUT, my two pet dogs seem to be able to notice when I’m about to have an episode, and if they are in the same room as me, nudge me or jump up a few minutes before. It’s really cool how dogs can notice beforehand even when it isn’t epileptic.
I used the word episode as I do not have full blown seizures, or at least most people wouldn’t call them seizures as it is not what they think of when they hear the word seizure. I have bouts of uncontrollable shakes, that can last anywhere between a few seconds, to the longest attack I had which was 3 hours long. I also have absence seizures and head drops which are both less disabling than my shakes.
Hi! I just came across this video. I’ve had PNES for about 5 years and it’s been awful. I’ve tried different treatments (as much as you can for PNES) and while there’s some improvements, it can make life so hard. I’ve been doing deep research into getting a PNES service dog bc usually I’m not alone but yesterday I was and I injured myself. I feel getting a service dog will at least help prevent injury for when I am alone.
I also agree that there has to be something physical there. I’m so tired of being written off by doctors because it’s purely a psychological thing. There has to be something, and I know exactly what you mean. This has helped me so much, so thank you again.
I know this was posted 5 years ago so I totally get it if this doesn’t get seen but if it does, how was your process as far as getting your service dog? Anything I need to know?
By the way, your dog is adorable!
Same but I have both types but The epileptic ones are of mixed variety I get myoclonis More frequently than any others
my mother has pnes, PTSD, and was just recently diagnosed with bpd which is borderline personality disorder and all of these are very very bad I think they are all connected which means she has had a very bad childhood and she never talks about it and it makes me upset knowing how much she's been through and I know I will never be good enough because she always blames herself for everything bad and it is impossible for her to see the good in anything no matter what everything bad is because of her and it is so sad knowing that she blames herself for well basically herself and her mom left her and she was raped and then her mom left her again and she cant sleep without somebody without her because she has a very intense fear of abandonment but she is getting a service dog and she wants it to be pretty big because she heard of this thing called deep pressure or something like that and that's why hugs actually can help you because deep pressure makes you feel better and when she has seizures our current dogs lays next to her and cries and he is small but this one will lay on her and help her even if she is just sad my mom does not like going out in front of a lot of people because loud noises claustrofobia or even smelling a certain smell can trigger an episode and she was FIRED from her last job because she had a seizure during it and now my dad is home 5 hours a week because he has to work so hard to keep us going my dad is very mean he is not aggressive he is just very short tempered he is a very good guy but he gets mad really easily and my mom blames that on herself my mom and my dad clash so much but they just love eachother to death and it kills me to see two very great people to have to suffer to much my dad is very personal like he keeps to himself he wont go to a psychiatrist and he wont try to help himself he once had neck surgery and 6 hours later drove home and went to work 6 weeks later he is very hard working but he causes my mom a lot of stress and stress is I very very bad thing in my house because it travels if one person is stressed everybody is stressed then mom has an episode I really hope that nobody has to ever deal with what my mom has to and I wanted to just spread her story because of how touching it is please dont feel bad for me but feel bad for her I have so much sympathy for her I rarely think about anything else all I want is to please her and it's really hard when not even perfection is good enough thank you for reading this far have a great day:(
I have pnes for the past 2 years as well and ptsd.
I have PNES as well and I have been looking into getting a service dog. How much did it cost? That is really important because I have heard that some cost about $30,000 and I don't have that type of money.
Thanks for this video, it was very interesting and informative. One thing I would say is that it is only assumed dogs can pick up on epilepsy due to abnormal activity in the brain, that might not be how dogs detect epileptic seizures. I suspect it isn't, and that however they detect seizures is the same for both epileptic and non epileptic conditions. The fact Reid can pick up your seizures before they happen shows there's a lot more going on in the mind and body that we don't know about. It's not simply someone getting stressed and dropping to floor and having a seizure. I'm certain that although the cause is not organic the symptoms are very physical. Do you mind me sharing this video with some non epileptic seizure groups I'm part of?
+Alice Kirby Of course you can share! I would be honored actually!
I definitely agree with you, the mind body connection is very strong and real. More than so many people realize!
What's always bugged me is that I've had chronic headaches for 4 years now. Before my seizures started, not once did I ever hear a neurologist tell me it was stress or this or that. I was put on so many different meds to try and help all that. And YET you cannot not see migraines and headaches on any medical test! It is literally a patient telling a doctor! But you show a doctor a very real seizure.. And no.. not good enough!
I have PTSD, hallucinations, autism, and dissociative disorder. I've been getting seizures but my eeg and mri came back normal and the neurologist said it's not neurologically related it's stress-related. So I think I have PNES, but who diagnoses you? I've been wanting a service dog. I want to owner train my dog but don't know where to start.
Any advice on breed for sd? I’m looking at labradoodle and Goldendoodles.
New subscriber... I’m curious how dogs detect PNES seizures... I think it’s because dogs get to know their owners very well and can detect something is wrong, and react accordingly, trained or untrained.
I have Epilepsy... I have 3 dogs, an 11yr old JRxChi, and 2 recent Romanian Rescues... both the rescues I’ve had for over a year now and they get very worried when I become unwell. The older one will push her head under mine to cushion it, and the younger one will sit with me and both will lick my hands until I recover...
I also suffer from PNES and I'm looking for places where theses service dog can be bought at. I only know of 1 place and that is in San Diego. but I can't afford to go there. so please if you can tell me places that would be amazing!
What kind of dog do you have
I have PNES and want to look in to getting an alert dog, but I dont know the process. How did you go about applying for an alert dog?
I started doing a lot of research and finding things around me. I ended up going with pawstrainingcenters which works with the non profit paws4people. they have a branch in Seattle, portland and several in PA and Virginia I think
I get these type of seizures, I've had more than one trauma and have complex PTSD. I was tested for epilepsy and I don't have it, but I'm getting seizures. My counselor diagnosed me with PNES, but how do I get diagnosed by a doctor? I am planning on getting a service dog in the future, I am going to owner train with some help on the side. How do you train him to alert to your seizures? I know it's a natural thing for dogs, but how do you train him to alert, I really need a service dog, I have PTSD, Fibromyalgia, migraines, seizures, Schizophrenia, I dissociate, and I have autism. According to my research, a service dog can help with all of these. I am going to be 18 this month. I need a bigger breed, and I've already decided on a Rottweiler. I am doing a lot of research on service dogs, training them, and I am also doing a lot of research on the breed.
I have PNES and I am looking into getting a service dog but I dont know how?
The brain is the most complex organ that doctors dont know enough about. My neurologist said even if things dont show up in an MRI or for them to see, there is not enough technology to see the whole central nervous system through out the body with the brain and how it reacts. I have dystonia and it is not shown in MRI's. But I have it. I have a cousin that has it too. He also says there is one gene for one type of dystonia but there could be a gene that is expressed later in life that has not been found yet for people like me that got it later on in life. I also have had panic attacks since 17 after diagnosed with ptsd. I had a triggering event recently with an uncle during a dystonic episode, and I think after that trauma it sent me over the edge. Now Im getting seizures and my anxiety is through the roof. I feel like the seizures are a way to release built up energy/anxiety. I cant wait to start treatment to see if it helps. I think my initial PTSD stayed with me, never healed, and caused other health issues by ignoring it.
I suffer from PNES and am thinking about getting a service dog... I'm not sure how to go about sorting it out and being honest I feel like other people could benefit from having a service dog more than me... I dont feel that PNES is taken seriously and that a lot of people think it's fake and it makes me so so so sad... have you ever considered getting a tattoo in a visible place of the PNES symbol? I am considering that and getting my DOB and blood type tattooed as well incase people need to call an ambulance if I hurt myself... also what treatment have you been getting? I'm a little stuck on what to do with my treatment as my mental health team and doctors seem to be a bit of a loss with it all... hope you are having an awesome day 🌵💀
Hey there, so first off, there is no "you deserve a service dog more than I do". Mine changed my life, no, he saved me. Without him, I would have had to drop out of college completely and probably still be living with my folks. Instead I live an independent life living with friends, am one term away from graduating school and have already dipped my toes in the working world (though that one was a bit tricky I will admit). I do not have a PNES tattoo, however I do have a tattoo that represents my struggle with my eating disorder which I have been battling for 10 years. I have a medical ID bracelet that says seizure disorder, has my DOB, name, parents phone #. I'm the opposite when it comes to ambulances. I DREAD the hospital. When my dog alerts me, I warn everyone around not to call. Then again, I almost never injure myself because he warns me and I can lie myself down safely. Indeed PNES is not treated well. The medical profession does not know enough about it and I have been treated very poorly in ERs. I see a neurologist who specialises in epilepsy and PNES and he was the first to really know that it was a real thing which I had no control over. Unfortunately he never has much of an answer for me besides: try and get good sleep, lower your stress, eat well. Well... lol cause I'm in college which means bad sleep high stress and I have an eating disorder which means I don't take care of my eating properly.. My seizures have decreased significantly over the ast 3 years and I associate that with learning my triggers and allowing myself to take more mental and physical breaks. It has been a long process and I don't know if it will ever go away completely but.. yeah.. Hope this was helpful! Let me know if you have any service dog or other questions!
Do you ever get anxious?
use orange for you will be normal again,.normal people always do it and they are save cause it only repeating soo lack of thrust of it and not punish lock tounge,hand,and leg
Hi molly just wondering what kind of dog is Reid
He's a labradoodle!
I have PNES as well and would love a service dog but my partner says no that he thinks it is a crutch, a step backwards or a way to say Im giving up this is going to be my life and I need a service dog cuz Im never going to get better. I dont know how to explain how a service dog isnt that at all.
I'm so sorry your partner thinks that! a service dog could be seen as a crutch I guess but in my case it was the crutch that got my life back on track! would you not let someone in need have a wheelchair because that means they are letting their legs fail??
I would never be out of my house without him. yesterday he wasn't around to alert me of a seizure and I fell and bruised my face..
we don't have control over these seizures. a dog is not giving us the "all clear" for always having them. if anything, he brings more confidence and hope which could relieve seizures
I need service dog pseud seizures it’s start 2017
Pnes is hard. I feel like the dr's are extremely sceptical about them since they can't easily reproduce them. I cannot afford a 3000$ service dog (can barely afford the depakote). I am in ks which has one of the lowest approval rates for Disability in the country which leaves me very little options to survive given the restrictions my neurologist has put on daily living and the workplace etc. I just feel like one of those who fall between the cracks because I can't work a regular job, can't afford healthcare as a result, and can't afford a dog that would give me enough warning to help prevent my head from bouncing off the ground when these happen. At least epilepsy is something people can put their fingers on.
Hey man I'm in Kansas too my dad is having these and it's really scary, hope everything gets better
A service dog for pnes... ? I didnt know their was anything like that for pnes. I had a dog that would stay next to me at all times and if id start seizing hed go get a parent or friend and dring them to me. He would also howl till i came to. my mom had him put down tho cuz my aunt tryed to make him shut up when i was seizing and he ripped her arm wide open... 47 stiches later rosco went for a drive. I never trained him he was just an excelent boy ever since his first ride home.
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