Seizure?

[BenjaminT]

Good morning, I have been diagnosed with functional movement disorder. Last Thursday I started having a seizure like episode that my wife saw. She is a nurse and took me to the ER and I was unresponsive for about 2 hours. I had an eeg performed and during the flashing light my body convulsed and heart raced but the docs said eeg was normal and acted like I was faking it. Anyone else have an experience similar to this?

[nurmihusa]

What do you mean by "seizure like episode"? As you look through posts around here, a wide variety of such things are described. Which type are you? Most of us seem to have a couple of primary sets of symptoms and they do shift from time to time. You may discover as you study yourself further that you have more related symptoms than you first imagined. Do you know this website? neurosymptoms.org/

[BenjaminT in reply to nurmihusa]

When I have these episodes my arms tense up and shake and my legs do as well. I typically have these episodes after activity or trying to do to much. I have weakness in right hand and leg all the time along with peripheral neuropathy. I have trouble walking and griping things in my right hand and dexterity issues. I had worked in healthcare for 15 years before this and am now on short term disability. It has gotten to where I can't type and I have trouble writing.

[Hidden in reply to BenjaminT]

Hi Benjamin,

It sounds like you are describing some of the symptoms of FND.

Are you seeing a neurologist? You should have someone to tell you what to expect even if you are not receiving treatment.

I agree with Nurmihusa that it would be a good idea to look through both the website neuro symptoms.org and also the FND hope website for a list of symptoms.

Through joining this site iv learned that it really depends where a person lives and who they get referred to, to determine what treatments or support they will get from health professionals.

Some get psychological support and some physical therapy or a combination of both.

And you are always welcome to ask any questions or just describe your day. You will always get support.

FND diagnosis can be very frustrating but there are some great people on here to help.

[BenjaminT in reply to Hidden]

Yes it is frustrating. After 6 months of going to physicians I was finally referred to the Mayo Clinic and they diagnosed me with functional movement disorder. I do physical therapy even though it exhausts me but it has improved my walking. Mayo Clinic told me about the neurosymptoms.org website. I have found a local movement disorder specialist that I am going to start seeing. It is a frustrating battle. I am glad to know there are others going through the same thing.

[nurmihusa in reply to BenjaminT]

A number of folks around here have been through PT in connection with their particular symptom set. With varying levels of success.

I have not.

I am focusing on addressing my stress and unconscious panic. That seems to work best for me.

I learned early on that my seizures respond to Ativan or Xanax. A benzodiazepine will shut down an attack within forty five minutes. But you don't want to be taking them except for occasional emergencies. But the fact that my attacks DO respond to an anxiety killing drug is pretty clear evidence that anxiety (stress, panic attacks) is at the bottom of my problem.

In my case, the worst of my attacks looked like a grand mal seizure and lasted between eight and nine hours a day for months. I still have such attacks, but not at that level these days.

And yes, docs looked at me as if I was faking, ignoring the very obvious fact that NO ONE can consciously maintain a grand mal seizure for more than a few minutes and certainly not for eight or nine hours a day.

[nurmihusa in reply to BenjaminT]

Are you right handed or a leftie? Which is to say, is the weakness on the right more debilitating than a weakness on the left?

If the theory that it's ALL in our heads is correct (we generally dispute this, but accept that headgames are significant) - then your subconscious shutting down your right handedness is an important clue to what may be going on. Your sub may be telling you the only way it can that it wants you to stop and pay attention to it.

Sigh. A temper tantrum.

Well, that's the way I look at it. Grown up me wants to do x, y and z - but my cranky toddler of a subconscious is entirely opposed.

Now then, the big danger here is assuming that ALL the acting up is FND. It's clear to many of us that we have more than one thing seriously wrong. Too often, doctors ignore our treatable problems because they toss everything into the FND pile.

[BenjaminT in reply to nurmihusa]

Yes, I am right handed and that is where my limbs are the weakest. I think with my problems mostly affecting one side had thrown many physicians off.

[nurmihusa in reply to BenjaminT]

hmmm... I'm wondering then if your inner toddler isn't messing with you?!

(I try to keep a sense of humor about this. All the fear and anger wasn't helping.)

What are you doing to lower stress? (Sometimes that's the only thing that works.)

[nurmihusa in reply to BenjaminT]

The shaking spells sound like FND to me. I have them too. In a variety of colors: shaking, writhing, wriggling, jerking, crunching...etc. in my case I do connect them to stress and unconscious (as well as conscious) panic attacks. I have a grab bag of coping skills I can use to mitigate.

The weakness and neuropathy...makes me wonder if there's something there a chiropractor might help with. I get pinched nerves that need released now and then.

Again, we often (invariably might be a better term) have more than one thing wrong and attacking our situation from more than one perspective is invaluable.

[Hidden]

BenjaminT.

Good morning.

I also have functional movement disorder and polyneuropathy. I can identify with the phrase "seizure like episode" as I have used it often over my twenty-three years of symptoms.

I was a bit unsure of your use of the term "unresponsive " for a two hour period of time. Sometimes, it helps us on this site to know exact meanings because so many members of the community have a great deal of medical knowledge and that particular term can be quite alarming to us. Could you tell more about what was observed happening to you during those two hours?

We genuinely are here to help and support but we are always careful not to wrongly assume or interpret what someone has experienced with FND like symptoms.

The severity and diversity of manifestations makes each of our medical conditions quite unique. Would be very interested to hear more from you.

Thanks for seeking us out.

Dan / Seattle

[BenjaminT in reply to Hidden]

My episode of shaking lasted about a minute then my wife could not wake me up. She said she was poking me in the face and yelling at me but I was not responding to her. She finally called my father and they drove me to the ER. It took me about two hours to finally start communicating. I had a similar type episode when they were flashing the light during the eeg. But the docs said everything was normal. There are a lot of unanswered questions with this diagnosis. There are many ups and downs like a roller coaster ride.

[Hidden]

BenjaminT

Wow.

So physiologically, your body continued to maintain some level of basic function - respiration, blood pressure, electrolyte stability, etc. - while at the same time you were unaware of external stimulus and either did not or could not respond?

Did the ER perform MRI or CT particularly of the brain during your evaluation?

It would seem inadequate to have only an EEG test...

Roller coaster is a term I have seen used in this community to describe the apparent gap between presentation and the investigation, or lack thereof, into cause.

You would seem to be on that ride. That is part of the frustration many experience in. being given this diagnosis prematurely before other causes have been ruled out.

We have found that this diagnosis can be given in error...

Dan / Seattle

[BenjaminT in reply to Hidden]

Yes MRI and CT were performed and were normal. In my opinion, I think for some reason or another people with this problem develop a disconnect with certain areas of their brain which causes various disorders. The complex part is repairing the connections.

[Hidden in reply to BenjaminT]

BenjaminT

I am glad your initial scans were normal.

Your opinion as to the brain developing a disconnect problem is a good observation in that your thinking would be in agreement with how some professionals think about FND as a diagnosis.

I am not a doctor or medical professional. Only a patient. I can only give you feedback on some of my experiences.

More than one doctor has tried to link my complex movement disorder with some type of psychological stress or trauma . I can only tell you that in my case, no such link has been established even though I have been willing to undergo neuro psychological testing. The absence of a link has left me without a path for further diagnostic testing, treatment or follow up monitoring of my condition.

Some doctors have asserted that " the science is not yet there" to explain why the brain may not be communicating with my body. This has left me with a diagnosis that is not grounded in science. Not a fun place to be.

If in fact the brain is damaged or not otherwise functioning properly but such can not be visualized by imaging, then I am left to wonder how it may be damaged, what would be the process for self repair, if any, and what would be the medical therapies available to me to facilitate a repair process.

As you can guess by now, the diagnosis leaves me with few options for maintaining stable health. Some folks try PT, others try CBT while others continue through a complex maze of doctor visits and referral which consumes great amounts of time, energy and money often with little improvement.

Others, like me, have ongoing organic disease processes which often get lost in the confusion of FND and how to deal with it. My severe neuropathies and symptoms of dysautonomia and possible autoimmune disease are examples of this occurring.

Not here to discourage you. There are many of us in this community with a wide variety of presentations and severity which unite us in search for answers. I could find no better company to keep. Folks here have great awareness, compassion, knowledge, support skills, coping strategies and just plain out love for others that I am humbled by daily.

We all do medical research and post findings from time to time. The most valuable insight comes just from listening to what others go through and have found.

I am glad you sought us out. I encourage you to work closely with your doctors on every detail of what you experience and to question every answer you are given if you do not agree with the findings. We know misdiagnosis happens and we have seen others ultimately receive far more serious medical diagnosis as they progress in symptoms.

This is a difficult position to be in as a sufferer and also is difficult for family and those who serve as caregivers.

Again, from my 23 years of this stuff, I have had to make lots of life adjustments and rely heavily now on my family due to progressive disability. It has become very hard to get medicine to continue investigations of declining health because many doctors simply do not know how to proceed. The medical community is full of opinions on FND but there is little research ongoing that is revealing much about the disease pathology.

I hope to always be available to exchange thoughts. There are a large number in this community who will be here also to help. Many of them have far greater knowledge on this than me.

Keep writing. It helps us all to hear from others like you.

Dan / Seattle

[nurmihusa in reply to Hidden]

Dan,, there are times when you and I have carbon copy sets of manifestations. (The gorilla walk, for example) And then there are sets of manifestations that couldn't be more different.

Do we have the same thing wrong with us, or a similar thing? Or something very different? Or do we share one ailment (or two?) while having other very different maladies as well?

It is fascinating and frustrating.

[Hidden]

Hi Nurmi.

Hope you are okay.

The mystery is beyond my capacity to understand.

I have blood pressure and heart rate maintenance issues at this time.

I see doctor Friday. She is extremely concerned.

I chalk it up to just another way in which the body and brain and mind are not getting the job done anymore.

I doubt structural defect will be found.

This most likely rules out conventional treatments.

Could be dysautonomia. Could be fibril infiltration. Could just be the cells do not work together like they are suppose to do.

Maybe some meds. Maybe not.

It devastates the body's ability to function continuously.

I hope you do not have what I have. I really do. You deserve much better than this...

With great respect for your tenacity of thought and pursuit. I send my love your way brother. Feel better.

I have to sleep now.

Dan

[nurmihusa in reply to Hidden]

I read up on dysautonomia. Damn, if it doesn't sound just like what you've been complaining about?!

[Hidden in reply to nurmihusa]

Hi Nurmihusa,

I have Sjögren's syndrome. It's an autoimmune disease but it has all the symptoms of the FND symptoms contained within which is why I am now waiting to see a rheumatologist and neurologist as dysautonomia is one of the symptoms.

It's managed by rheumatologists and neurologists as peripheral neuropathy and some other neurological deficits are included in the symptoms.

[cathys20 in reply to Hidden]

Hi Dan, As you might remember when I went to Mayo last I was diagnosed with autonomic neuropathy and pots. As of recently I have been diagnosed raunauds and probable auto immune system disorder. All of my inflamatory markers are sky high also. Two weeks ago now I had the worst pain in neck and head, cried and writhed in pain for two days. A subsequent MRI of neck and head revealed I ruptured a disc in my neck and the one above and below are bulging. Total c6 nerve pinched. Dr. called wanting me to see a surgeon, I said no way, not right now, way too much going on with one body. It is a struggle at this point to do much at all. Heading back to Mayo on the 2nd, will let them dissect all the information and see what comes of it.

I would pray you too can get the help you need from a caring group of Dr.s. And all of our friends on this board. Whatever it is we all have, it sure seems like we are attached somehow in some way. One thing for sure, it is an organic issue, and at this point do not know if that is going to help us or not. Holding all in prayer, and for a good day of health. I know I myself could you a respid. I have had only one eye working all week because of the hemi-facial spasm and it is making this head of mine throb. God Bless each of you, Cathy Many on this board may be suffering from autonomic dysfunction, if you have not been tested please do so by a very good team of Dr.s. It is difficult testing but could really help with quality of life if you get the answers and help you need.

[Hidden in reply to cathys20]

Oh my sunshine Cathy.

We tied together. You right.

I had two level ACDF surgery last year. Only remember the sweetest anesthetist from Montana holding my hand telling me she would wake me up after and hold my hand. There were seven people in the operating room. I saw more big screen monitors in there than they have in the local TV shop. It was completely surreal.

Recovery of wound not so bad but took a long time to get the marbles back in a circle.

I look like pirate jack with face pulled aside and one eye spasm shut. When BP falls, the whole mess becomes fixed in place.

I not worry about doctors anymore. They will get around to me soon enough. I kiss and hug my wife every chance I get. I do anything for daughters.

Had all the beatings from whatever this disease is...

Now I just tell it to bring it on and let's see who pops up in the surf. I got my faith. That is all I need.

Love you friend. Make sure they go in on the right side. The left side has some very delicate structures to navigate. Won't let them hurt you.

Dan

[cathys20 in reply to Hidden]

God Bless you Dan, yes without our Faith this all would be too much to bear. One of my many favorite verses says, I am the Lord your God, who holds you with my right hand, do not be afraid, I am with you. When the storms of this life hit, some harder than other, I always feel His hand on mine, and it any and all situations I am comforted.

Had back surgery two years ago, and the back is bad as ever, pain is so severe at times, will take a lot for me to let them do the neck, I will suffer with it as long as I can, with the spasmodic dysphonia I have I don't think my vocal chords would take it. I want to keep the little voice I have left. But I will listen and let the Dr.s give advice, and then bathe it in prayer. I am so sorry for all of your pain, it is hard to have pain, but you and I are very blessed Dan, we have our husband/wife and our families. Many are alone, suffering alone, they need our prayers. God bless you dear friend, and all of you on this board, We need each other. Cathy

[Hidden in reply to cathys20]

Cathy.

I feel your strength. I stop now to again say my prayers for all.

I forget about the localized swelling around the vocal chords and larynx. Had several visits with throat doc on that one post surgery. It is a risk and a scary one as I found out. Tissue inflamed badly but was several weeks after so they do not know what went on.

On the ropes today. You bring good news in His word. Take care sister.

Dan

[Hidden]

Hi BenjaminT, I too have experienced these seizures for hours, no response I can give, unable to move, but in my head I can hear and understand what is being said but unable to respond. These have happened in hospital after MRI where I stopped breathing and they got me out and left me till I came round on my own, they just said you had us worried there but just left me, I've had them at home trying to hoover and collapsed for hours, my partner had to just wait and watch till I could come out of it myself. If I do nothing I don't have them but as soon as I have to go in car, appointments, trying to concentrate they start again, they are frustrating as I am still there in my head, only good thing for me is when these type seizures happen I'm not in pain, the other seizures I have am contorted, face in agony with mouth stuck open, dribbling and spasms but locked in whatever position I'm in. Welcome to this lovely website where all struggling but can talk to others who can help or just listen and understand what we are going through, that is priceless, best wishes Lisa-anne

[BenjaminT in reply to Hidden]

Thanks for all of your insight. I had another seizure episode last night. Mine seem to come on when I have been more active than I should have. Going to the grocery store is a chore any more. When my wife got home last night my foot was twitching real bad. I was talking to her and she said she could see it coming on. She said my pupels dialated and I started slurring my speech and staring off in the distance. She said she could tell I wanted to respond to her but I could not. I think it scares my young kids.

[Hidden]

Like your wife my partner can tell too. The slurred speech, fixed gaze, unresponsive, my grandchildren don't visit anymore as they set seizures off as voices too high and the baby crying, I get too embarrassed and don't wish them to see their nanna in that state, my daughter has managed to get them out before they see me as my daughter gets upset and I don't want my grandchildren frightened. I do think your children will get used to it and not be frightened as with you and see more, then a visit now and then. I really feel for you as I know how I look and feel while having them and hate for anyone to see me like it.