Posted , 5 users are following.
Hey does anyone here have non epileptic seizures? Just looking for someone I can talk to about them. Within the last year they have progressively gotten worse. I'd like to share my symptoms and see if anyone can relate or give me advice. I just feel very alone in this.
0 likes, 10 replies
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Alfielefoo 91clare59
Posted
Shes a leading doctor and.the book really really helps understand just how powerful the mind is.
I am.sorry you are suffering these attacks.
91clare59 Alfielefoo
Posted
Alfielefoo 91clare59
Posted
Even though the seizures are non epileptic, i totally appreciate how destressing they are for you.
From.what i understand, theres an excellent chance that you can get much better with the right support.
Wish you all the best
janet93405 91clare59
Posted
Hi Clare ,
you are not alone as I have discovered there are lots of people out here with NEAD . These horrible episodes of seizures and associated symptoms can in some cases be improved by self-help techniques , but I would always seek medical advice first . I understand that most Doctors don't recognise NEAD as a true medical problem which then makes us feel left hanging without any support . Please have faith in this forum as there are many sufferers who will gladly converse with you .
My seizures began 3 years ago when they thought I had meningitis , however since then I have regular attacks whenever my pain levels get too high or I am very stressed . I have recently been advised to seek Cognitive Behaviour Therapy which I'm still waiting for from GP .
I hope this will help you and I'm just an email away .
All the best from Janet
91clare59 janet93405
Posted
It's very frustrating because they are very misunderstood. I am lucky because I live in Minnesota the Mayo in Rochester has a spell clinic for diagnoising people with NEAD and help find a treatment plan. Basically they keep you in the hospital hooked up to an EEG and wait until you have an episode.
I am also looking into CBT as well as DBT. It seems like it will be a long road for recovery. I am just very grateful that I can use this forum for support. It seems that whenever I try and talk about it to anyone else who hasn't experienced it before they just stare at me and don't know what to say.
91clare59
Posted
Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
janet93405
Posted
Hi Clare ,
sorry about the confusion regarding Email messaging . It would best far better to converse with other sufferers via this forum . I replied in haste after a bad nights sleep ( several seizures because of severe pain )
What is DBT as I'm not familiar with this . I am still waiting to try CBT . My seizures are always tonic/clonic just like grand mal , I have no warning other than my left foot and hand sometimes jerk by themselves .
I hope this will help you and please contact us via this great forum .
All the best from Janet .
paula76344 91clare59
Posted
Hi Clare
I am a bit of a nerd when it comes to NEAD. I have suffered from them for 16 years. Initially I was diagnosed with epilepsy (like so many) and then after flying to Acotland to be under the care of a professor my diagnosis was made.
I would love to tell you mine have stopped but that would be lying. It took 6-7 years to diagnose and they do say the longer it takes to diagnose the lower your chances are of recovery.
I have had counselling, CBT, EMDR etc unfortunately they have not kept the seizures under control. I do se a neurologist every year to see how & if there are any new treatments they are offering newly diagnosed patients.
I do know many people who get an early diagnosis are NEAD free. I do my best to lead a very normal life and I have probably come to accept that they are part of me.
Take care & don’t let NEAD dictate your life xxx
91clare59 paula76344
Posted
Thanks so much for replying to this! So what was it like at the spell clinic where they diagnosed you? I am going to do the spell clinic in Mayo Rochester I am very grateful I live in MN for that reason. They have really good specialist. Also thankful for being on medical assistance or else I wouldn't be able to do it. Got to love being a poor millennial!
If you don't mind me asking what are your symptoms? you can email me this as well I would love to discuss this further I want to learn as much as I can about NEAD. I have done a bit of research over the years but I prefer learning about others experiences!
I am also looking into CBT but currently enrolling in DBT because I've heard really good things about DBT.
I am just really hoping these finally get better rather than worse! Thanks for the reply! I already feel better
Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
patricia09902 91clare59
Posted
I have non-epileptic seizures, but we know the cause. i had a brain biopsy 14 years ago when my daughter was 6 months old. we have no idea why this occurred. i did have a significant bleed following the surgery and was in ICU for several days. What they thought was a malignant tumor or infection was actually a demyelinating lesion. (the kind of brain lesion that looks like MS.) after many tests-- MRI's, spinal taps, eegs, etc, it was determined that i don't have MS, because the lesion is a singular sclerosis or scar.
almost to the day a year later i started having uncontrolled seizures. we don't know why. probably the combination of surgery, bleed, taking brain tissue rather than tumor tissue, and maybe the stress of my job.
it took a lot of meds to get them under control. we have finally found a combination of lamictal, topomax, and klonapin for emergencies. lexapro was added to the mixture and helped a great deal. i am also on the three-month pill and skip the placebo weeks because my hormone fluctuations trigger seizures. stress is a factor, as is lack of sleep.
i am in the process of working to find a doctor who will consult with me on possibly including CBD oil in the regimen. i think finding a doctor you like is key to finding a solution that works or you. if you haven't found him or her, then keep looking. after 8 years with this guy, i am empowering myself to find someone different.