Admitted To Hospital

[hodge]

That's good news, Laurie! I'm so glad it wasn't a stroke or epilepsy. I'm glad they're reviewing your meds and that you will get to go home before too long.

 

[Deleted member 20280]

Have suffers my worst seizure so far, have to see neurologist on Monday now and will need an EEG as well, guess I will be in hospital for some time yet to come.

 

[Ronin]

Hope it doesn't repeat or come back with increased frequency, and that tests come closer to knowing what exactly is wrong and how to fix it.

Warm thoughts of you, Laurie. Hang in there tight.

 

[Justmehere]

I'm so glad they will be doing the EEG.

I'm so sorry you are still stuck in the hospital. Praying for a speedy solution to get these seizures under control so you can go home. :hug:

 

[hodge]

Oh, jeez, I'm so sorry, Laurie.

 

[Deleted member 20280]

Well I am due to be discharged home in just over an hour, have not been seen by neurologist or even had an EEG !!!!! I have had 24 seizures in ten days, well if I have a bad seizure at home and injury myself I will hold the NHS to blame, have also not been prescribed any anti-seizure medication. Bloody unbelievable !

 

[Lucycat]

@Mr Laurie did they not explain to you about non-epileptic seizures? They do not show up on an EEG as they do not derive from electrical discharges.in the brain. Therefore no medication will prevent them or stop them once one has started. They are of psychological origin not neurological, so a neurologist would be an inappropriate referral.

It is something you need to deal with by discussions with your psychologist and psychiatrist. They are the experts to help you resolve this and stop the seizures. Please, it is not the NHS's fault that you have this condition and it sounds as if you have been thoroughly investigated before they came to a diagnosis.

 

[greenleaf]

When they say "psychological", they don't mean nonexistent or made up; there is research showing that the connectivity between brain regions is altered in PNES. You can google "PNES" and ptsd to find some research. The "Epilepsy" medications are strong substances & can actually harm you, but won't help PNES... so they are right not to subject you to them if you have PNES not epilepsy.

The research I've read about PNES seems like the research has got a long way to go, but the good scientists/doctors now will not now believe people are making it up. Not-so-competent doctors believe all sorts of things... ugh.

So, I think of it as something to do with how our brain networks get altered due to trauma.

Other studies show CBT as helping some PNES; it may be that whatever helps you heal from trauma in general, also slowly helps the connectivity and your PNES too. Please be as safe and gentle with yourself as possible!

 

[Deleted member 20280]

@Lucycat and @greenleaf thank you for your input, PNES was not even broached as a possibility by the consultant. All he told me was that the hospital would not perform an EEG or refer to the neurologist and that I was to request this through my GP psychological seizures were not discussed either. I am seeing my GP tomorrow morning and will broach the PNES with her then, thank you both again. As you can imagine this has been a very scary twelve days for me.

 

[Lucycat]

Ouch! They told you it was not epilepsy, but did not tell you that there is a term 'non-epileptic seizures'. That is very poor. You have shared your diagnosis here without even realising that is what you were doing.
https://www.epilepsy.org.uk/info/diagnosis/dissociative-seizures-non-epileptic-attack-disorder-nead
This is a UK website that tells you about it, and also all the different names that have been used, past and present.

 

[greenleaf]

They have diagnosed stress related PTSD seizures

It doesn't sound like these folks would have been the most helpful; the consultant didn't give you any of the names that would help you research it... @Lucycat posted a site that seems good.

I was looking over research on PNES and there are loads of studies during the last few years, not a ton before that, so finding a doctor or therapist who keeps up with this field might be helpful.

My non-professional impression of all the long words having to do with brain parts... it might be a side effect of dissociation, something to do with abnormal connections between parts of the movement areas, emotion areas -- including the limbic system (our favorite brain part! not just regular emotion, fight-or-flight level emotion)... other areas with long names... (my hippocampus is having a bad day, sorry. )

Also, one article actually mentioned that patients often have problems with medical specialists because no one medical specialty has yet to "own" PNES; use of the word "psychogenic" might cause neurologists to immediately shut down, for instance, esp. if they have not read any of these relatively new articles (common, because there are zillions of conditions to keep up on, unfortunately).

Many of us have had similar issues with doctors with other aspects of PTSD-related illness treatment too, I guess.:(

Please be gentle with yourself as you figure out next steps, this has sure been a rough couple of weeks.

 

[greenleaf]

This article seems relevant; the authors are in the U.S. Maybe googling their names would provide more info on their latest work.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175378/