Pseudo seizures for 2 years and getting worse

Ruth

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Hi Steve,

Never get off of any medications by yourself. It can be very dangerous. When any one is having problems with medicines, call your doctor and tell him/her you are having problems with the side effects of a medicine.

I care,

Ruth
 

matchu

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yes I am on ativan adderall and serequel and lexapro but have run out of lexapro..
Is this going to be a problem?
I am on a small dosage of serquiel only 100mg seems to be working by what others have told me about how I am acting and what not.
 

Ruth

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Hi matchu,

You are doing a lot better.

You should not drop a medicine without asking your doctor. Tell him/her your problem with it and see what your doctor says.
 

matchu

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doctors orders were to stop all seizure meds and continue with my deppresion medication. Caffeine? Don't take away my coffee no Maam! I just wonder if an artist is an artist if said artist has no troubles to influence the art. I hope I don't lose myself in this ordeal. But maybe it is so that I must find a better me?
 

Ruth

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Hi matchu,

I will not take away your caffeine. It bothers some, others it does not. All of us are different in what we can have and have not. You sound a lot better.

I am glad you are off your seizure meds. Keppra causes mood changes in some people.

Keep up with your art. You have beautiful artwork.
 
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Hello Ruth - and everyone else in this thread.

It has been awhile and I thought I would give a quick update.
*** No real improvement ****

I have been switched from Prozac to Pristiq about 5 months ago. No real improvement but it seemed to make me less tired. I managed to get back to my jogging and ran 2 marathons - 1 in Oct and 1 on Thanksgiving, but am still bothered at least once a week with "this spell" - panic attack, pseudo-seizure - whatever you want to call it.

I started seeing an alternative health care professional, who suggested a bunnch of vitamins (not herbs,as he knows which prescriptions I take). I have totally eliminated aspertame and other artificial sweetners, and cut my coffee consumption in half. Still planning to eliminate it completely, but sometimes I am so zonked, presumably by the meds that I need it.

I have also cut down on grains and dairy, at his suggestion, but not eliminated them entirely (yet). I also added a daily smoothie made from 15 fruits and vegetables each day.

I wish I had better news to report, but at least it hasn't gotten worse. I am getting a little frustrated in that nothing has worked; I am learning to live with it, but often at work I find myself looking for a vacant office to go hide in until my shaking stops. I am getting fed up with myself for handling it like this, but I have caused a scene so many times I feel that hiding is the best approach, while I wait for the valium to settle me down.

I am still of the belief that things happen for a reason, and despite this being an annoyance, in the grand scheme of things it is not THAT bad.

Thanks again for the support you have given, and I do hope that some point in the not too distant fture I will be able to come back and tell you the problem has gone away.

Steve
 

Ruth

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Hi Steve,

Glad to hear from you. I have not heard of Pristiq. Is there another name for it? Keppra keeps me awake. You either get fatique or insomnia from it. I am getting the insomnia. It beats sleeping all of the time. I am glad to hear that you are able to do a lot of exercise. That is good for all of us.

It sounds like you are on the GARD diet. It is in the Social Groups. I recommened you join it.

I take GABA, over the counter, at a health food store and the medicine Mysoline for my shaking. I am allergic to Valium. I am glad it works for you.

It sounds like your employer is very understanding. That is most of the battle.

Please keep posting Steve, we need your information.
Ruth
 
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Hi Ruth,

Pristiq is an antidepressent, an SNRI; it is sort of the newest incarnation of Effexor.

I never heard of the GARD Diet, but I googled it and read up on it, and it sounds exactly what this alternative medicine guy (who is a licensed pharmacist, so in my opinion not a quack). I have told my doctors about the vitamins, supplements, and dietary changes I made according to the pharmacist and asked thier opinion. They did not object; they simply said the alternative methods had not been studied as formally, and supplements not regulated for consistency as drugs are, but they did not object.

So in the short term I will continue seeing 2 therapists, taking Pristiq and valium when the attacks come, a boatload of vitamins and supplements, and try to close the gap in my diet to eliminate the coffee and small amounts of grains and dairy that I still consume.

And as a parting message to everyone in this forum, again I thank you for your support and will offer the same advice I give to myself: "Hang in there, if your treatment does not work after enough time has passed, seek an alternative approach (with doctor approval) and mostly, have hope for the future. What is not possible today may be possble tomorrow or 6 months from tomorrow, if you do the right things (at least it worked in marathon training..."

Best regards,
Steve
 

RobinN

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My only suggestion, and one that has been suggested by your pharmacist is the elimination diet. You say that you have cut down but not eliminated entirely. You will never know if this is working unless you cut it out entirely. I realize that you have changed for the better a lot of your daily diet, but it is suggested that unless you eliminate them entirely you won't see results. Commit to doing it for 3-6 months. Heal your GI system. I realize it isn't easy, and there is a grieving period when you have to restrict that which you have grown to love and are addicted to.

There are support groups on the internet. This brain-gut connection is extremely strong.

Good luck
 

occb

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Hello SJ -- if you do the GARD elimination diet, please keep us updated on whether it helps.

I'm curious about what you're experiencing, since a bit of it sounds like what my partner experiences. If you come back, I have a few questions for you --Do you wake up tired? Sometimes with headaches, including jaw pain? Are you an active sleeper? Has anyone observed you doing strange things in your sleep?

I hope you get this to a point where it's much more controled. I know how much these things can interfere with normal day-to-day functioning. Good luck!
 
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Hello occb,

I have not had any headaches or jaw pain during sleep or upon awakening. I sleep pretty much the whole night through. I was having ocassional problems with muscle cramps - the so-called "charley horse" but I think it was from running, and since I started taking a magnesium glycinate supplement it happens much less often, like once every 2 months vs once a week.

My wife says I often have nightmares but I don't recall them.

I love your Avatar - is that "The Starry Night" by Van Gogh? This is off topic but I was drawn to that painting the first time I saw it. I was also drawn to another of his - of some trees called "The Road Menders". And then a few years ago I found myself listening to the (long) Dylan version of Mr. Tambourine Man, which includes such phrases as "to dance beneath the diamond sky..." and "...the haunted frightened trees" and I now speculate that my attraction to these Van Gogh paintins may be a result of my hearing Mr Tamborine Man years earlier. I know, useless trivia, but I couldn't resist commenting when I saw your avatar.

TTYL
Steve
 

occb

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It most definitely is "The Starry Night". I find his work very hypnotic He has an enviable way to produce movement on the canvas that makes you feel a part of the scene. I love "The Road Menders" too. I had no idea that "Mr. Tambourine Man" included references to van Gogh's work How interesting is that! I like off-topic, useless trivia :lol:

Your nightmares -- do you moan or yell loudly during them? Do you have periods in your sleep where you kick or punch rhythmically? Do you scratch, or chomp your teeth furiously in small intervals?
 
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As far as the nightmares go, I am not aware of any kicking, punching, or teeth grinding during the nightmare or regular sleep. I would say yes to moaning (or so I have been told) and once in awhile wake myself up with a loud yell.

The yell nightmares are remembered - it usually involves being chased by armed bad guys through a junkyard or parking lot, and then I wind up in a blind alley with the bad guy standing there raising the gun and I realize now there is no way out!

Do you think there is a relation between this and panic attacks or pseudo-seizures? I think I have had dreams like this nearly all my life, about once every couple of months, but never spent any time trying to find a meaning in it. I just shrugged it off as one of those unexplained things in life and forget about it.

Regarding Dylan and Van Gogh, I am not saying that Dylan is referring to Van Gogh's works, it is just an association I made in my own mind.

But one thing that has happened to me as a result of experiencing these panic attacks is that I have become more tolerant, or less judgemental of other people. Now I know first hand what it is like to be different...and wouldn't ya know, Dylan said it way back in 1964 in The Times They Are A-Changing when he said "Don't criticize what you can't understand"...way to go, Bob!
 

occb

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It's funny how perspectives change with experience. Bob's right -- don't criticize what you can't understand.

I would definitely keep a diary of you daytime and night-time experiences. They could very well be linked, and the first way to tell would be if they increase or decrease around the same times. If your wife is willing to help out by observing some of your night-time behaviour when you're having your nightmares -- makes notes on breathing changes, movement (if any), sounds etc., it will help you to create a more complete picture of your what's going on.

Since childhood, my partner always got recurring nightmares about the Viet Nam war, despite not having known anyone who served, or knowing anything about it until he got older. His psychiatrists always assumed it had to do with his anxiety disorder, but because of fairly recent escalations of seizure-like symptoms, we're exploring the possibility of epilepsy right now. If you're into doing your own research, I would explore nocturnal frontal lobe epilepsy, various parasomnias and sleep apnea, as well as various anxiety disorders. It may be worth it to have a night-time VEEG done, if you haven't already.
 

McGill

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Steve, have you had a battery of tests done to rule out a host of potential problems such as those mentioned in previous posts?

While I'm not a dr., what comes to mind is that there is some form of neuralgia or nerve pain, possibly a pinched nerve which might be one source of your "pins and needles" sensations which you described. A proper neurological assessment as well as an MRI & CT Scan would possibly be your best bets to try and rule out any possible other illnesses. (I'm aware that such procedures cost $$$, which I don't dare tell someone to spend. It's not mine to spend!!)

I would encourage you, like the others have already, to get things properly checked out, especially the memory lapses and the balance issues with your falls.
 
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I have had several of the tests done but not all. I did have an MRI and it turned out ok.

Inyrtestingly, a friend of mine knows someone who had similar symptoms to mine, and after years of going through tests, meds, doctors, finally found the answer by taking a tilt-table test.

From what i understand, the person was having seizure-like symptoms but it was really caused by fainting or near fainting episodes related to some kind of syncope disorder.

I asked my doctors who said it was not warranted for me to take this test, since I do not faint or lose consciousness, and since I jog regularly without fainting it does not apply to me.

I've decided to try to completely give up coffee & caffeine next, which will not be easy, and then work on becoming 100% gluten-free.

Will keep you all posted.
Steve
 

Ruth

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Hi Steve, I look forward to you keeping us posted. The right words for what you have is NEAD. Non Epileptic Attack Disorder. It does attack your brain just like seizures attack us. You have seizures, as well.

Stay with us, we need you.
 
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Hi Ruth,

Is NEAD the same as PNES (Psychogenic non-epileptic seizures)? And from what I can get after reading that whitepaper on PNES from U of Tampa (I think) is that PNES is just a more politically correct word for pseudo seizures.

The shrinks and neurlogogists have told me I hve PNES or Panic Disorder, but no "electric storm" in the brain, so technically not seizures.

I am at the point that I don't care what it is, I just want to get rid of it.

Bye for now.

Steve
 

RobinN

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Hi Ruth,

Is NEAD the same as PNES (Psychogenic non-epileptic seizures)? And from what I can get after reading that whitepaper on PNES from U of Tampa (I think) is that PNES is just a more politically correct word for pseudo seizures.

The shrinks and neurlogogists have told me I hve PNES or Panic Disorder, but no "electric storm" in the brain, so technically not seizures.

I am at the point that I don't care what it is, I just want to get rid of it.

Bye for now.

Steve
We were told the same thing Steve. We went to UCLA and that was their take on the situation. However, the seizures continued and this was not PNES. I finally was able to get a referral for a 3 hr glucose tolerance test after asking for it for a year. My daughter was diagnosed with hypoglycemia. Perhaps not abnormal EEG, yet the seizures still continue when pushed past her threshold level. Hormones are a big trigger for her.

I also did not care what the label was, I just wanted to heal her. Sounds like you are at the same stage. Nutritional changes have made a huge improvement, when she sticks to it.

The brain is reacting to a trigger, and it is out of your control when it does happen. Therapy has helped my daughter, and the therapist has agreed that the PNES diagnosis does not fit her. Which gave me encouragement to follow my instincts.

Keep searching, and keep a journal of health related information.
 

Ruth

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Hi Ruth,

Is NEAD the same as PNES (Psychogenic non-epileptic seizures)? And from what I can get after reading that whitepaper on PNES from U of Tampa (I think) is that PNES is just a more politically correct word for pseudo seizures.

The shrinks and neurlogogists have told me I hve PNES or Panic Disorder, but no "electric storm" in the brain, so technically not seizures.
Steve
Hi Steve, I do not know if it is the same wording. I think it is. Do not quote me on this. I do consider it a correct word for pseudo seizures. It sounds better. I was not correcting you.

You are having seizures!! So, therefore, you are having a "storm" in your brain. Just because it is not "electric," you have seizures all the same.

Robin, you and me are right, you just want to get rid of it!!

Ruth
 
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