Functional Seizures

[Calistar]

I live with functional seizures and I’m interested in connecting with anyone who lives with functional seizures as a symptom of FND. Thanks

[eviedotty]

can you describe for me if you don’t mind how functional seizures work as in what are the symptoms. Are they the same as puedo seizures. I ask because I appear to be having seizures attached to dystonia and I am not epileptic. I have never spoken to a neurologist about these I have just been told I have them by A&E doctors. I did have an EEG test some time ago but they did it while I was having a dystonic episode and the whole thing just became farcical

[Calistar in reply to eviedotty]

Yes, functional seizures are non-epileptic seizures and are known by several different names including pseudo seizures. What is dystopia?

[Calistar in reply to Calistar]

My seizures have a lot of repetitive motion and I babble like a baby in mine.

[eviedotty in reply to Calistar]

I have not to be honest asked to be investigated for what is happening, I have a muscle movement disorder caused by a problem in the brain that does cause bleeding to happen. There are two issues first the muscles twitch so hard they shake and secondly I have a level of pain related to the condition and I have been seen by a doctor at its worse and was diagnosed as my body was going into shock due to the pain level. My condition is rare and little is known about it by the doctors and they I find if the problem can’t be fixed it tends to be re diagnosed as something they can at least associate with. I was told I had FND and asked both the neurologist and my own gp doctor what are my symptoms and what is the care plan and on both ocassions I was told no symptoms means no care plan possible and as such the FND was challenged by the doctors but once it is on your records I find that it does tend to get used as a go to at times of trouble for the doctors

[Lady4 in reply to eviedotty]

That response makes me see red and just a cop out.When you say "twitch" do you mean they go into spasm? And is that your arms or legs? (If legs/arms is it just one side).

[eviedotty in reply to Lady4]

Literally twitch as in here,there and back again and to be honest I would not have thought of seeing a doctor about it as I just put it down to one of those things. With further investigation by myself I find that the shake thing can be connected to a pinched nerve situation that was diagnosed years ago after a work based incident. Now having figured this out myself using scan information and physio assessments that were done again years ago I came to my own conclusion and having done that it was time for a chat with show and tell with the neurologist and his conclusion on nothing more than an opinion was that the issue was to be diagnosed as dystonic seizures

[Lady4 in reply to eviedotty]

Hi its good that your advocating for yourself. There are different types of seizures, pretty sure one of my older posts details them.

[Lady4 in reply to Calistar]

Hi, do they last a long time and do you experience an "Aura"? They are given several names but they differ, my son had what they call "drop attacks".

[eviedotty in reply to Lady4]

I recently have a bigger problem with this and it has a smell thing attached to it, this week has been bad because it just repeated over and over for four hours the other day and it left me with an almighty headache and very tired

[Lady4 in reply to eviedotty]

Oh I am sorry to hear that, try not to worry and rest where possible. Hugs xx

[eviedotty in reply to Calistar]

Dystonia is a muscle movement disorder and for me it has originated from a bleed in the basal ganglia area of the brain. It is monitored by neurosurgical team who were amazing in how they explained things. Looking at the MRI scan on the computer screen they were able to point to the historical bleed because it leaves damage behind once it has healed. So they were able to state while pointing this is the bleed, there is the damage and then assessing me from the picture they were able to say although you have generalised dystonia it is actually right side dominant which is text book for left side of the brain damage leaving right side of the body damage. They were then able to point out the stroke I have had from a different bleed in the frontal lobe left side of the brain and right side deficits in the body. All very simple for me and easy to understand however move all this information over to the neurologist and it becomes FND. The seizure type events for me are pinched nerves again shown by MRI scans to the neck area. Again quite easy and simple to follow, however the neurologist has stated that these events are FND

[jennes75]

Hello! I also have functional seizures but they are still on the cusp of thinking I have both FND and Epilepsy. I have a cavernoma in my brain that could be causing inflammation. Are you on seizure meds? If so, do they help you?

[Calistar in reply to jennes75]

Sorry to hear this. It must be difficult to differentiate between the two. No, I’m not on any seizure meds but do take a low dose antidepressant.