new symptoms of NEAD

Posted , 4 users are following.

Hello everyone ,

it's been quite a while since I have had a seizure , but last week whilst at the dentist I had a very long severe seizure . I am terrified of the dentist but have managed to overcome my phobia , that was until last week . Despite taking my own diazepam prescribed by my GP , my phobia took over when I needed a filling . To get to the point apparently I had 4/6 seizures followed by complete unconsciousness including a respiratory arrest . I had no reflexes , unable to breathe for myself , didn't respond to pain stimulus or have no memory of the incident . I had the first seizure about 2.45pm and didn't wake fully until 9.30pm .

My query about this seizure is --- does anyone else have such alarming symptoms , and if so what can I do to prevent it happening again . I thought the seizures were bad but the respiratory arrest really frightens me , I am covered in bruises especially on my sternum and shoulder where the paramedics tried to rouse me . As a NEAD sufferer I have no neurologist to go to . I'm hoping my GP can help but I feel very worried and obviously concerned about going to the dentist again .

Any suggestions would be much appreciated .

Many thanks from Janet .

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10 Replies

  • Posted

    i wonder if it was some sort of reaction to the anesthetic? I know some drugs can lower your seizure threshold im not sure about that.. might be worth looking into.

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    • Posted

      Hi Randy , thank you for the reply .

      From what I've been told and remember , I had two Tonic/Clonic seizures , the second lasting 7 minutes , then I stopped breathing but still had a pulse . No drugs were given until paramedics arrived , then I fitted 4 more times . I woke up in the Resus department several hours later . I am covered in bruises from where the medical staff tried to arouse me . My memory is still a bit foggy and I can't go out because I'm still a bit light-headed .

      The only drug I took prior to the seizures was a 5mg of Diazepam which is prescribed for my seizures and I've never reacted like this before . I am very dental phobic hence why I took the Diazepam beforehand .

      Has anyone else had multiple seizures that cause you to lose consciousness and stop breathing . Many thanks from Janet .

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    • Posted

      Hi Randy ,

      I had all the neurology tests and nothing was found , so the neurologist diagnosed NEAD . I have tried to find research on these varied seizures , but I haven't found anywhere that records someone being unconscious for 2--4 hours plus having to be resuscitated ( stopped breathing but still had a pulse )

      My GP suggested that maybe because I have so many other medical problems including heart and lung , this series of seizures caused me to have a combined medical ( breakdown ) This does make sense , however I am left feeling even more anxious about it happening again , especially if I'm on my own . I was very lucky that the dentist and paramedics got to the hospital . I am currently trying to get my medical records so that I can see exactly what happened .

      Any additional help would be very appreciated .

      From Janet .

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  • Posted

    Hi Janet,

    I hope you are feeling better and I can understand you're scared and worried. I know it's easy for me to say but please dont worry. All sorts if things can lower your attack threshold especially stress.

    I was diagnosed with NEAD is 2014. Took awhile to diagnose as I only had severe attacks when I had been drinking as alcohol lowers my attack threshold. All these times I ended up in AE so it took me ages to find a neurologist that would give me an actual diagnosis rather than 'alcohol induced siezures'. All other times my attacks just consisted of blank staring and short term memory loss. I'd be having a conversation with someone then suddenly start talking about something we had spoken about 5 minutes ago, because as far as I was aware we were still having that conversation! Quite funny for some people! I also refer to these as attacks because I dont like the word siezure. It implies something really dangerous and scary which I dont like.

    Anyway enough about me, did you have a particularly stressful at the dentist in your past that could of caused this? Sounds like you are getting stressed out by relating going to the dentist with something traumatic, increasing your stress levels.

    I am in no way a professional, but hopefully can offer you some reassurance

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    • Posted

      Hi Caiti , thank you for the reassurance ,

      I have been dental phobic since my childhood which is forty odd years ago , however three years ago I plucked-up the courage to see the dentist . Luckily I found an amazing dentist who specialises in dental phobics' like myself , up until now I have had teeth removed and partial dentures fitted with no problems , but my main phobia has always been the dental drill . As advised by both my GP and dentist I took Diazepam and music to help me chill out , this did work allowing two teeth to be drilled , but then something went horribly wrong , either my stress-levels reached boiling-point or maybe he hit a nerve , whatever it was caused me to have several seizures ( tonic-clonic ) unconsciousness and stop breathing which made me have a respiratory arrest . As you can imagine having seizures no matter how severe is one thing , but it's the length of time I was unconscious and not breathing that worries me .

      I am due to see the dentist on monday 11th and hope he can tell me exactly what happened , plus give me other alternatives for further treatment ( his sedation clinic won't accept me because I'm too high risk ) I believe that my seizures are caused by severe pain as they first occurred when I had severe chest pain . This leaves me wondering what the best form of prevention could be .

      many thanks from Janet .

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  • Posted

    Hi Janet,

    I always found listening to an audio book helpful as this helps to focus my brain. I also sometimes use something called Rescue Remedy which is a herbal supplement that can help to calm you down, I've found it really useful and its non drowsy.

    You could also try drinking herbal tea such as chamomile, I cant vouch for this because I hate the taste but I've been told it's really good! Unfortunately theres nothing else you can do.

    Hope this helps

    Caiti xx

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    • Posted

      Sorry also forgot the mention, if the attack causes you to stop breathing your brain will "reset" itself automatically which will mean your breathing will return to normal. My neurologist told me that this is the brains way of performing a hard reset and isn't too dangerous as the whole reason you stop breathing is because during NEAD attacks you brain is basically performing a 'flight or fight' scenario. Maybe your anxiety over stopping breathing is making this worse?

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  • Posted

    i wonder if it was a reaction to the diazapam considering the different levels of thresholds that people have with it... i get terrible side effects if i take more than 1mg a day.

    I had the same issue at age 6 and it turned out that I had Acute Disseminated Encephalomyelitis (ADEM), MS, and Epilepsy... though it took them a while to figure that out.

    Apparently when i had the seizures where i stopped breathing it was due to the medication (i.e. the tollerance we build up to them)... I still have multiple seizures but they're "perfectly normal" ones now after i was taken off Tegretol

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