Convulsions During Eeg, Doctor Says I'm Normal And To Be Cured I Must Believe It

[IceLizard]

Hello everyone,

Just wanted to see what your opinion on this would be. I just went to see my Neurologist about my EEG results. During the test they flashed a strobe light at me and it caused me to go into convulsions. The light was intensely bright and every time it flashed I startled. As the speed of the flashing increased, I could feel my heart rate increase too and I began to get panicky. Then it got to the point where I began to shake and I went into convulsions. It was odd because this is also what happens when I take the tilt table test: heart rate increases, then convulsions, only here it was triggered by the lights.

I will tell you what I think it is: I think it was a really exaggerated startle response caused by a dysfunction of my autonomic nervous system. I have this startle response in daily life as well. Noises or other stimulations will cause me to jump, and if I am feeling especially sensitive, if the stimulations continue I will become tachycardic and go into convulsions. I have noticed that beta blockers really help with this problem, but I can't always take them as often as I feel I need to because my blood pressure drops and I pass out.

Since my brain waves were normal, meaning I am not epileptic, my doctor believes it is a psychiatric disorder. To cure me, he says I must undergo the test again and watch it on video while he explains that my brain waves are normal. Then once I see that I am normal and BELIEVE it, the convulsions will simply disappear. Talk about RIDICULOUS.

I'd like to discuss this problem with a doctor that takes me seriously so that maybe we can find some way to manage this, but I am not sure who to talk to next. Anyone else have a similar problem? What has helped you?

Thanks in advance for any replies!

[gjensen]

Do not take me too seriously.

I did notice what comes first, so dealing with that may deal with the other.

On the other hand, I doubt believing anything is a fix. But maybe it could be. The events are out of your control otherwise you would not have them. I am sure that you do not enjoy them.

It seams to me that we are often dismissed because these things overlap.

For example I have developed an anxiety issue. I do not know for certain why, but it is not because of "unresolved issues". There is not a darned thing that I could resolve that would fix anything.

It seams to me that my anxiety issues are part of what is going on with me, but not the original cause. I think that anxiety is a secondary cause, and I would guess instigates or exaggerates some of my symptoms. It is just not first in the order of things.

And on the other hand anxiety would seam natural when so many unusual things are happening.

I think that your doctor is right in believing that there is a connection. I think he is wrong in not considering a cause other than what is in your control.

Your brain waves may be normal, but it does not mean that there is not anything else going on.

I picture a day where psychiatry and neurology are one and the same.

[MomtoGiuliana]

I'm sorry about this experience and I hope you can see another doctor who can be of help with your symptoms. Have you seen a cardiologist with expertise in autonomic dysfunction?

When my symptoms were severe, I remember having episodes of trembling that were out of my control. I am also still pretty sensitive to being over stimulated by lighting in particular. I avoid strobe lights b/c it can cause symptoms for me, although I have never understood exactly why.

There are some DINET members who experience convulsions or convulsion-like symptoms.

I do agree with gjensen that there can be overlap with anxiety and POTS symptoms for some of us -- and therefore confusing -- POTS symptoms can appear to be caused by anxiety and symptoms caused by anxiety can seem like POTS. And our symptoms can be so disturbing at times as to bring on anxiety. I think especially early in diagnosis. Once we become more aware of our condition, how to manage it, etc this could lessen any anxiety. I know it did for me anyway.

[DADofPotsSon]

My son#2 experiences convulsion syncope due to POTS, which is basically due to an overload from being over stimulated and he takes a combo of toprol xl and dilantin, both a low dose. This drug combo was worked up by a neurologist and a EP with help of a university hospital, He has had many EEG's and all test indicate not epileptic in cause, just cause by POTS over stimulation.

[Becia]

I see a neuro guy on Monday to see the results of my EEG. I had a sleep deprived one that came back abnormal, not sure what it was, but I have been having grand mal seizures for the past couple months. A couple of my docs think it's all the pots meds I'm on, but the neuro wanted a more detailed EEG done.

Ali know is I'm currently tired of coming to on the floor after peeing myself. Seizures or not seizures, this has to stop.

[Freaked]

I've developed an exaggerated startle response since I've had POTS, worse sometimes than others, due to my high adrenaline issues. Stimuli such as flashing lights make me feel a lot ickier now than they ever used to, but then even feeling excited in a positive way often makes me feel bad. I just have a low tolerance for anything stimulating. An overactive sympathetic nervous system can cause a lot of weird problems. Trying to be calm mentally can't help beyond a certain point, but freaking out certainly makes things worse. It's difficult to find a doctor who understands the distinction.

[Katybug]

I think any doctor that doesn't take convulsions more seriously deserves to be fired. I'm sorry bt I just don't believe that some form of behavioral modification therapy is going to stop convulsions. I would seek a second and even third opinion if need be. I do believe that passing out do to pots can cause non-epileptic convulsions, but again that's not behavioral.

[IceLizard]

Hi you all and thank you very much for your input. I have convulsions after I collapse and I recognize that they are due to low blood pressure. (Confirmed by tilt table test). But, I am also having similar convulsions in other situations like I did in response to the lights.

I have decided to make an appointment to see my counselor about this problem. Although I do not think it is "all in my head," if it is an overactive sympathetic nervous system issue it may be able to be managed like anxiety or panic attacks. So I will talk with the counselor about seeing the Psychiatrist to explore whether this can be treated that way. I am running out of doctors I trust.

[Becia]

I've developed an exaggerated startle response since I've had POTS, worse sometimes than others, due to my high adrenaline issues. Stimuli such as flashing lights make me feel a lot ickier now than they ever used to, but then even feeling excited in a positive way often makes me feel bad. I just have a low tolerance for anything stimulating. An overactive sympathetic nervous system can cause a lot of weird problems. Trying to be calm mentally can't help beyond a certain point, but freaking out certainly makes things worse. It's difficult to find a doctor who understands the distinction.

Same here! We discovered when we went to go see Percy Jackson in the theaters that I can't handle action movies. This was made more evident when we were watching Red awhile back. It's so weird, but it's true. Sounds bother me, too bright a light bothers me (the only light I can tolerate at night seems to be my fish tank and my lamp on the low switch), action around me, such as going to the store when it's busy and the lights are all on ( our walmart has some natural lighting they use during the day that's perfect, but the moment the night comes and all the brights come on, I have lots of seizures and outs).

I say now I'm a pretty boring person, because so much bothers me and it's so hard to explain. Christmas Day I was in tears because I didn't want my family to leave, but the stimulation of them in my space, the kids voices echoing in the living room, etc, really set me off. I have found that if I know where I'm going, normally I can find a place to calm down somewhat. My room, my desk corner with some music, at church I'm normally in the youth room above the gym on a couch with my headphones on if need be, and even at walmart, I will go hide in the yarn aisle, because I know it's kinda closed in, quiet for the most part, and the lighting isn't directly above it. That, and I love yarn...

[gjensen]

Hi you all and thank you very much for your input. I have convulsions after I collapse and I recognize that they are due to low blood pressure. (Confirmed by tilt table test). But, I am also having similar convulsions in other situations like I did in response to the lights.

I have decided to make an appointment to see my counselor about this problem. Although I do not think it is "all in my head," if it is an overactive sympathetic nervous system issue it may be able to be managed like anxiety or panic attacks. So I will talk with the counselor about seeing the Psychiatrist to explore whether this can be treated that way. I am running out of doctors I trust.

I thought about discussing my anxiety with one. It is a symptom that I need to manage at least.

But . . . if there is a blood flow problem to the brain that can cause us a collection of symptoms. My theory anyways.

I am new to this, so I do not know a lot. I can relate with the doctor situation though.

[AshleyPooh]

I don't have POTS, I have NCS, but they are very similar in their root causes, and symptoms, so I will add my input here.

Ever since my dysautonomia set in, i have noticed changes in the way i handle certain 'stresses'. For instance, I do not like bright lights, loud sounds, or really anything that overstimulates me, such as getting angry or upset.

I have noticed that when my ncs acts up, I sometimes tremble. I think this is due to overstimulation perhaps, or exhaustion.

I would say that for you, having convulsions COULD be psychosomatic, but I would never assume that, and I would be looking into other causes while I was getting checked out for anxiety issues.

I do know though, that if i were stuck in a tube with horrible flashing lights, I'd probably react badly too, and I don't have convulsions so that should tell you something

[gjensen]

That reminds me of something.

I had a neck and brain MRI early into this. it was annoying but not to bad. I had one later once I had become more symptomatic, and it was very difficult to tolerate. My sound sensitivity was much more pronounced, and my periodic muscle twitching went into overdrive. There was a marked difference between the two experiences. As a result I was more anxious the second experience over the first.