Posted , 4 users are following.
I have been told that I have NEAD but on recent admission to hospital with chest pain I wasn't given pain relief , this triggered a severe seizure which apparently lasted 6/7 minutes , when I came round I asked if the seizure had been caused by the pain , but the doctor told me that pain does not cause seizures . I was discharged feeling totally confused .
Any ideas ?
1 like, 16 replies
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mary50992 janet93405
Posted
A few years ago a week just before going on a cruise I was going to my work for a night shift. I was walking down our street to the bus. Suddenly I stepped on a pine comb on the side walk close near the curb. I stumbled with twisting my ankle and actually fill on the busy road. A car stopped. The teenagers went to my home to get my daughter and a ambulance was called. When in the ER after having x-rays done I suddenly had a seizure caused by the extreme, overwhelming pain. So how much pain can the human body bear up to, little lone the brain?
janet93405 mary50992
Posted
Hi Mary ,
? thank you for the reply , I hope you were ok after your ordeal . It's reassuring to know that pain can cause seizures because I was made to feel that my seizure was put-on . It is incredibly scary having woken up from a seizure and not knowing what happened or for how long , then to be told to go home without any explanation or time to recover . I went home on the bus but hardly remembered the journey .
mary50992 janet93405
Posted
Dear Janet,
Extreme pain can cause seizures. These seizures are not a put on for attention, who has the time to waste doing so? They are nasty things to endure to say the lest
I have had many seizures during sleep, wake up to auras and than go into a seizure. Also I have not woken up and just had seizures after seizure. My daughter called a ambulance. The paramedics had to put me out with a spray drug up my nose. Loosing memory after a seizure is common as the mind is so dopey and in a state of rebooting itself back to normal again. I have had my time of it. Life goes on. It can be most trying at times. I'm here for you.
janet93405 mary50992
Posted
Dear Mary ,
thank you for your kind words , at last I don't feel so alone with this horrible problem . I wish you well and hope forums like this can allow us to support each other .
many thanks from Janet
mark47387 janet93405
Posted
janet93405 mark47387
Posted
Hi Mark ,
? thank you for the advice , however this episode wasn't a one off as I've been admitted into hospital several times with chest pain and resulting seizures all tonic clonic . I do have cardiac syndrome x which can be extremely painful and now I have these seizures . I have had various tests including EEG which caused a seizure , but my hospital has failed to follow up my appointments with the results , I have tried phoning , E-mailing and seeing my GP but still no appointments . I have lost faith in my hospital and don't know what to do .
? Sorry about the long reply , and thank you for your reply .
mark47387 janet93405
Posted
Are you based in the UK? I hear nightmare stories about this. Largely, because a lot of GPs are not fully aware themselves.
There are some organisations that can help:
http://www.fndaction.org.uk/non-epileptic-attack-disorder/
https://www.epilepsysociety.org.uk/non-epileptic-seizures?gclid=EAIaIQobChMI4qu8_taT2gIVo7XtCh2ZFARXEAAYASAAEgIhj_D_BwE#.Wr38HraZMWo
http://www.codestrial.org/what-are-dissociative-seizures/4580117806
https://www.epilepsy.org.uk/info/diagnosis/dissociative-seizures-non-epileptic-attack-disorder-nead
http://www.nonepilepticattackdisorder.org.uk/non-epileptic-attack-disorder/
I hope these may be able to help.
Besides the symptoms all the other stuff can be stressful too. It is possible to feel like you are crazy (you are NOT), I felt like this for a time - it is common. I guess that feeling is heightened if others around you, especially the docs, don't believe you.
There are medical professionals that DO understand. Thankfully, mine do (they diagnosed it). So there ARE people out there for you too. Remember you are NOT crazy!!
Point your doctors to the websites as these are supported by medical professionals. It may help
Mary know's her stuff, so it is worth stay in touch with her
M
janet93405 mark47387
Posted
From Janet
P/S I am in the UK
neal81465 janet93405
Posted
Most or doctors are I'll trained in non epileptic seizures from my wife's experiences these last 8 years almost anything can set them off.
janet93405 neal81465
Posted
Thank you Neal for the reply .
? Has your wife been offered any treatment for nead ?
?If so what are they because I haven't been given anything . I was promised a full assessment in a neuro unit but nothing has been forthcoming , I can't even contact the Drs because I don't know who they are , even my GP is confused by lack of communication .
many thanks to everyone from Janet
neal81465 janet93405
Posted
Not anything effective she's been doing therapy with a phycologist but they really don't know what to do.
janet93405 neal81465
Posted
Does anyone have the same problem ? This makes me question how our brains work regarding various triggers . And therefore how can it be just a psychological problem as suggested by the hospital doctors .
Thanks to everyone who gives me advice , and sharing their stories with me .
mary50992 janet93405
Posted
Dear Janet,
Hi, it's me Mary. You asked about sun exposure as a trigger. I wear rose color glasses that are for light sensitivity when I go outside. Too much brightness can trigger seizures for me especially when the sun reflects off of metal object such as cars. This is my solution. Any fluesent lighting in buildings or bus station, flashing lights etc...T.V. fast editing, strobing, or lighting strikes, lack of enough sleep or too much of a stressful situation. I have gone a few months without seizures and started to believe it is the end of them. Life is to get on with. Never start to believe it is a mental illness because you will go down the rabbit hole of depression and life is too short for that. Wearing a brim hat may help out in the sun to shade your eyes too. The best to you.
janet93405 mary50992
Posted
Hi Mary , thank you for the advice I will go shopping for sun hats , sunglasses , tinted glasses and a parasol .
?I am careful while watching TV , but didn't expect that sitting in the shade would still cause problems . I know lots of people love the sun , but I'm beginning to hate it .
? I have lost faith in my local hospital , but I am determined to fight for my right to get medical assessment and treatment , because no-one should be denied the chance to see a specialist .
? Many thanks to everyone .
mark47387 janet93405
Posted
Hi Janet
People are giving some advice really good advice here.
I wear tinted glasses too. It is worth going for a visual stress test at the opticians to find the colour that works best for you. I go to my local university. They discuss the symptoms & possible triggers (ie lights / screens etc). They are also mindful of this when undertaking the tests too - but I would take someone with you should things “kick off”. The wife of one of the opticians at my clinic has epilepsy and uses coloured glasses to help her.
Not many high street options offer the service, but I know of at least one Specsavers that does. It is definitely worth checking out as the specific colour & tone will be tailored to you. The colours can often vary from person to person often blue/green or pink. The intensity can vary too. Ideally look to go to a uni if you can as their prices will likely be lower. Check out www.anglia.ac/eyeclinic their number is
I have two pairs, one specifically for the computer (which use I have to strictly monitor, no pun), the other for distance.
In the meantime some toned sun glasses may help. Definitely call the clinic though. Let me know how you get on.
Remember you are not going mad! It seems to me that NEAD still needs lots of research & many of the medical profession no little more than the patients! However, that is not always the case, so keep being vocal. Provide the evidence from the websites etc & ask for a second / third opinion.
I have heard good things about EMDR treatment to help manage seizures, as well as mindfulness exercises to help remain calm - stress, particularly as a result of the seizure or of pain could feed the cycle of having more. So much is unknown about the brain 🧠, and a lot of these symptoms slot together some how. You are not mad!
Managing potential stress is good whether you have seizures or not, so I would at least give the following relaxing technique a try
Please do not try self administered EMDR from YouTube videos. I have not had this treatment, but given the intensity of it, it seems rather silly to watch a video with no medical staff present. However, the relax thing (see link) is basically just listening to someone (I don’t watch the screen) & deep breathing.
Anyway, keep us posted on your progress! Mark
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janet93405 mark47387
Posted
I have always struggled with meditation , but a good friend has helped me recently with reiki and relaxation . I will keep everyone posted on my progress .
many thanks and best wishes from Janet .