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TheSmokeMonster

Normal 20 Minute EEG Results, HELP

I don't want to make this any longer than it has to be, so I'll try to keep it short.  My general/family doctor first started treating me for "anxiety attacks" with Topral (a beta blocker) because he noticed that when I was just sitting still, my heart race would speed up and diagnosed me with PSVT and Mitral Valve Prolapse.  He said he didn't think I had an anxiety/panic disorder, because for the most part it seemed to be unprovoked and he would continue to look at my symptoms and see what he could make of it.  I had been treated for the past eight years with just about every single anti-depressant/anti-psychotic available, to no help... Actually, it only seemed to make my 'episodes' much worse.   I had also been diagnosed with JUST about every single psychiatric illness the therapists have in their books, besides maybe multi-personality and schizophrenia.  In May of this year, I just got fed up with these therapists and decided to see a regular doctor.  After seeing him several times, going over my symptoms in much detail, he concluded that he thought I may be experiencing symptoms of Partial Seizures.  He added Topamax and Gabapentin to my Topral, and it slowly started to help.  Before these two medicines were added, I was basically pulling my hair out.  My hair was down to my waist.  I had to get it all chopped off to my ears.  Apparently, I was grabbing it and twirling it into knots without knowing it... And before you know it, one side of my hair was about ten inches shorter than the other.  It had just been progressively getting worse.  No amount of therapy or anti-depressant water pills helped.

 I guess I was fine with his 'diagnosis', but my family and I wanted to make sure, so he recommended us to a neurologist.  After my first visit, he also seemed to think that I was experiencing Partial Seizures.  Actually, I think I may have had a Simple right in front of him while he and my husband were chatting.  He took notice of this, asked if I were ok, etc...  So, he waited a month before finally sending me to a hospital to get a 20 minute EEG.  My experience there was awful.  I was to go off of my meds for the few days before.  That was all I was told.  I wasn't told to not drink caffeine or anything like that.  It certainly wasn't sleep deprived.  My experience at the hospital was awful.  All was well until I actually got into the room where the EEG was performed, and I started to get really anxious...  The lab technician kept looking over at my husband asking things like "is she always this nervous" to which he explained "No, it's the fact that she's afraid nothing will show up, we dont' have insurance and we will have to pay out of pocket again for another one"...  So apparently, I had a brief panic attack or period of anxiety during the beginning of the EEG.  Is this 'not' normal??

 Anyway, the strobe light part of the test came...  I could feel my heart racing with the beat of the strobe light as it got faster.  My husband described my eyes as looking as though they were rolling open and shut to the beat of it as well.  It really bothered me.  My left arm went numb and started hurting and remember feeling like jumping out of view of the lights.  After that part of the test, I was asked about our anniversary.  My husband quickly answered with the correct date of our marriage, and I insisted he was wrong.  I was very confused, and didn't realize what I had actually done until we left the hospital and I talked to my husband.

 The technician decided to 'skip' the deep breathing part of the test.  I have no idea why.  I was actually rather irritated.  This could have helped in diagnosing something FOR SURE.  I don't have asthma...  I wasn't undergoing a terrible anxiety attack, and in my opinion, I could have gone through with it.  That is what I was there for.  I paid out of pocket for this test, and had waited over a month for it.

I left the hospital thinking, of course, nothing is going to show up on this test, she didn't even finish it...  I felt really awful afterwards, horrible nausea, headaches, and my balance was completely off, I immediately went to sleep when I got home.  The next morning, after I woke up, my right and left thighs seem to almost be weakened/stiffened and it's hard for me to walk at all.  It has improved slowly over the past several days, but I have never experienced this before.

 To cut to the chase, my appointment with my neurologist for the results was yesterday.  He said he was pleased to say that I had no seizure activity on my test.  Nothing else...  I was not pleased at all.  Although he said it may still be seizures, he would like me to have a 48-72 hour EEG monitoring in a bigger hospital (which I am aimlessly searching for the funding for now).  He also noted that the anxiety and the seizures could be related.  BUT, he took my Topamax and Gabapentin and quadrupled the dosage of Klonopins.  He gave me a big lecture about anxiety, and said he hoped it was 'just that' and that way I would 'NEVER HAVE TO SEE ANOTHER NEUROLOGIST AGAIN IN MY LIFE'.... Excuse me, but WTF?  My husband explained to him he thought something would show up, considering what he saw the strobes physically do to me.  The neurologist just chuckled and said something like 'yes yes, I saw or read that'...

 He also explained that 20 minute EEG's are fairly uncertain... So WHY take my medicines from me and also order me for more diagnostics?  Not to mention, the tech. didn't even complete all the procedures within the test.

 Sorry, I said I would keep it short.  At this point, I'm just really angry, confused, and I feel like I've been made a mockery of...  not only that, but this financial situation is a drag on my family and I...

 

Anyone with any similar situations or suggestions??

Comments

Re: Normal 20 Minute EEG Results, HELP

Hi. I've been searching for two years wondering what caused my 'episodes'. I did have a regular EEG with the lights and the breathing and I did have an 'episode' during it. But it came back 'clean'. After being admitted in a special epilepsy hospital with a 48 hours EEG it clearly showed I did have seizures, but very deep in the brain. They do not appear on a 'regular' hospital EEG.... although they can be provoced with 100hrz (lights) and deep breathing. So don't give up and try to do the longer test. I'm still not finished with the complete diagnose (they think my seizures are just a symptom of another disease, so stil searching...) but I will not stop until I am 100% sure of the diagnose before I will continue with the meds So good luck to you and hope you'll find the answers you are looking for..
Love from Holland!
Dutchee.

Re: Normal 20 Minute EEG Results, HELP

It's good to hear that others have also had the 'regular' EEG's come back clean and find out later that there are seizures occurring with the longer test.  I just wonder what the difference is, better machines that can see deeper within the brain?  It is rather odd they skipped my deep breathing portion.  I am going to have this longer test as soon as possible once I figure out the cost of it all.

 I certainly hope you find out whether or not your symptoms are Epilepsy related or from another disease soon so you can get some peace and the treatment you need.

 Thanks much and good luck in your search for answers!

Re: Normal 20 Minute EEG Results, HELP

Hi,

I have been in almost the exact same situation as you. Its taken me 12 years to get diagnosed. Everyone tried to tell me it was panic attacks, eventually - i figured out it wasn't, but getting the Dr's to realize that is a whole different story.

For your reference, I have now been diagnosed with an Organic Mood Disorder, which is on route with midline Bipolar as I 'cycle' with anxiety, depression and so on. Annnd .. temporal lobe epilepsy. Temporal Lobe = emotions.

Here is something interesting for you, which I have only just recently learned: 

When an organic mood disorder exsists, organic meaning medically/neurologically based, and not just purley reactive to life events - anti depressants, in particular SSRI's can make symptoms much much worse.  As they draw the whole lot out. I have tried 5 or 6 anti depressants over the years, and this happened to me each time. No one ever picked it up until I found my current Doctor, just be chance.

Let say for argument sake, you are having siezures and they are coming from you temporal lobe. Lets say, you anxiety is linked to this medically, and lets just say you actually have a neurological type of mood disorder that manifests as anxiety. Im not trying to scare you, I know these are scary words ... this would explain WHY anti depressants have made you so much worse. And why they never helped at all. But - not many Doctors pick it up.

In these types of cases, antidepressants can help if - they are back up by a mood stabalizer. A mood stabalizer is different to an antidepressant. 

Sodium Valporate is a mood stabalizer in its lowest dose, at a higher dose - it is an anti convulstant.

I am willing to give my left arm, and go on the record to say that due to your statements about about antidepressants, this is what is happening. Im definatly not a Doctor - but this is exactly what happened to me. So even though I am giving up my left arm, take what I am saying with a grain or two of salt.

Looks like you are on Benzos now. Hmph. If you find your going backward again, try and bring up the contraditions of antidepressants in organic mood disorders and epilepsy. You really want to try and get your hands on a mood stabalizer like Sodium Valporate.

Moving right a long ...

EEG's only go about 3cm in to your brain. They dont catch activity that happens deeper in the brain. Some people can have full blown tonic clonics while hooked up, and it doesn't register. EEG's are a game of chance. Unfortunatly though, Neurologist decide on where they draw this line one way or another. I have one positive EEG (i felt really bad in it like you) and two negatives, when I felt normal. The inital EEG was discredited and I was told I had a mental illness where you make things up but you dont really know that you are. That was about 5 years ago.

Unforunatly, Neurology doesn't get the overlap between psychiatriy and neurological conditions. But, there are some out there who do. It taken me 6 years to find a GOOD Neuro, since I realised about 6 years ago that this isn't panic attacks. My Shrink is the one who is currently treating and medicating me. They are both communicating with my GP. Its taken a long time, but you can get there. You just have to keep trucking till you get a result. And the result is, that you will feel better. As long as your not feeling well, keep pushing!

 

 

 

 

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Peace, Love, Mung Beans