New Diagnosis but no proof

Hello All - I have recently been diagnosed with Autonomic Seizures, but the EEG, MRI, CT tests have all come out clean.  Started with occular Migrane in April 2003.  Progressed to full on migranes by June.  First true seizure in August 2003.  I was first placed on Topamax in November 2003 due to having a second seizure in 3 months.  Prior to August 2003, I have never had any problems.  Since then, I have been to the ER 7 times (as the unconciousness lasts for 10 - 20 mins).  As I work in a hospital, it is getting to be a bit disconcerting having these at work, but at least it saves me an ambulance ride.Since May 2004, I have been placed on Lamictal (200 mg/day).  However, I have had another episode 5 days ago.Episode starts with feeling of heat rising from foot to head.  Severe flush in the face.  Tingling and itching sensation in both palms.  Feeling of nausea and diarrhea and buzzing in head just prior to loss of conciousness.  I have been told that while I am out, my body is just radiating heat.  These auras begin about 3 minutes prior to blacking out.After the last episode, I was admitted for observation and given an echocardiogram and a stress test.  Also have been placed on a holter monitor for 30 days (but drown the blasted thing in the toilet only 5 mins before an episode). These also proved inconclusive.This is a difficult situation as I have two young children (6 and 8) who need to be brought home from school.  Being stuck with the bus limits my flexibility at work.My question is, how can all the tests come out negative but still be having the events?  I have been told that the next step is a VEEG.  However, my episodes occur at uneven intervals, generally ranging from 30 to 90 days (the expection being the last two with 8 months between).  Any and all feedback would be appreciated.Irhobbitish


RE: New Diagnosis but no proof

G'Morning!I have seen you have received no responses to your question and here is why I think that is: people who have traveled the bumpy road of epilepsy know it manifests itself very differently in all people and are therefore shy in commenting on other's symptoms, putting themselves in a position of perhaps suggesting to you their opinions of what you have or flat out diagnosing you, which no one on a chatline can do. So posters who question is this epilepsy often are not answered, particlarly if they do not have a firm diagnosis. I'm a very active, intractable epileptic, as many here are, both TLEs and generalized and in some perverse ways I feel lucky because I didn't have to go thru the guessing games I have often read others are forced to go through wondering - is this epilepsy? I had the symptoms right away leading conclusively I had full blow epilepsy and as shattering as that was for me I think it would have been more shattering to be told something like - you might have epilepsy, we're not sure. Way too many people I've read over the years, and have known, have gone through long periods of times having seizure or aura type activity and it is not establishsed is it epilepsy or something else. However properly diagnosing symptoms leads to appropriate treatment so this period of diagnosing correctly is important, altho hard on many. You know I've had a lot of testing, even emergencies multiple surgeries, there is no question I have epilepsy. Waiting and waiting for that next possible sz and in your case andin many others I've read about the qestion is - is it epilepsy or something else? There ARE many other conditions that cause seizures or seizure type activity.I've never heard of the type of sz you've stated, which means nothing. I'm always learning. I want to share what I do know with you tho.I have probably had life long epilepsy but it went to full blown, can't ignore it epilepsy aboaut 6 years ago. The way it started? I woke up one morning to start my second day of work, as an RN in a hospital, hospital worker like you IOW, and I couldn't figure out to get dressed. Couldn't figure out to get to work. Parked oddly, didn't turn my car. Just got out and walked in and changed into scrubs. I knew I was way off but it wasn't concerning. I know now I had a nocturnal sz right before I woke up, and was probably deeply in PI. I didin't know it though, didn't recognize post ictal at that time.But the person orienting me saw I was out to lunch. Insisted I go home, she drive me and what would become a hallmark for me particularly at the beginning of this journey exhibited itself, combaativeness, stubbornress, digging in. NO. I would drive myself home where obviously I couldn't. I think I knew that too, maybe was frightened, wanted to prove to myself I culd do it. I can't remember my thoughts. I do remember my actions. The person orienting me was actually blocking the dressing room doors so I couldn't get out of scrubs, drive home and I had what wound up to be a 2 hour or so t/c. It was treated in the hospital where I was worked. It is VERY hard to hide your epilepsy when you work in a hospital, are observed by many.A caution: I've been anRN for many years. I have an epileptic son I raised and so was my father. That didn't prepare me for how I felt though, and in confusion. I was sent to a doctor after this sz. It was too long and not ignorable (is that a word?). Placedon medications immediately and the sz's stopped. For5 months. I've been intractable after beingcontrolled for5 months.The diagnostic tests run on me when first diagnosed were standard and they were: MRI of my brain (normal); blood tests (normal); neuropsych eval (equivocal - I was too blasted away on AEDs t complete it. Later I did several times also normal). In my case though being extremely photoconvulsive I had an EEG, strobse were used as wel as hyperventilation and iI sz'd during my EEG. Conclusive. I had epilepsy.However I have only read and that is the extent of my knowledge that many people's EEGs are normal. I've also read in other posts that the focus of their EEG is too deep in their brains to show on an EEG and I've also read that an EEG is a limited tol. Many epileptics I've read posts from have normal testing yet obviously have epilepsy. I don't know what you do in a hospital but as a nurse for many years I know that many times we would know a certain condition existed but conventional testing wasn't conclusive, proved nothing. Indicated a negative and not the posoitive we were trying to establish with an obviously known condition. Conversely sometimes we would see a condition exhiit itself we felt we didknow exhisted and testing proved we were wrong. The condition was either something else, or didn't exist. Often too some signs of a condition existed for real, were negative on testing, and those signs of that condition disappeared. I had to ask myself, were the signs/symptoms of that persons illness or sndrome situational for a short period of time.Only again from what I've read in posts it is hard for some to firmly establish a diagnosis of epilepsy. I think that must be very hard on these people. To not know? Might be far worse than in my case where it was firmly known, then treated, I could then proceed to the next steps of treatment. I've also seen people falsely diagnosed with epilepsy, who did have what appeared as seizures, but for other reasons and I have known intimately one person who had non epileptic seizures. Sz's can also be caused from low blood sugar, arrythmias, many things that can cause seizure like activity.I was scared when I had my first VEEG. I've had 3. They are not frightening I fouond out. If I had any complaint it would be they are some what boring. In my case though VEEGs showed results and answered some questions, non invasivley that nothing else was answering such as what kind of sz's did I have, how often was I sz'ing and in my case didn't know it, where were they coming from in the brain, what kind of epilepsy I had and many other quetsions were answered. I sz daily, a lot so my VEEGs wereshorter than many others. Therefore perhaps I breezily suggest quicker than some people that I think you should have a VEEG. It could answer many of your questions and your doctors.To have an appropriate diagnosis is to lead to appropriate treatment. I would suggest since your doctor did that you proceed with a VEEG. It might give you a diagnosis none of us like, a diagnosis that is not epilepsy and should be treated as if it is epilepsy, but treated appropriately in other ways. Going through the diagnostic establishing period is very hard on people where confirmation or a need for more knowledge is needed. I would think that insecurity of waiting for the next seizure, wondering what is wrong with me type questions would be very hard at this juncture for you, anyone. Find out what is going on. Rest your mind. Get appropriate treatment by appropriate testing. Let me conclude by saying I tend to go status very easily. That was one of my biggest fears in havinag my first EEG. Usually AEds are reduced and I wasn't controlled on AEDs. This was respectedand my AEDs were not reduced. The staffs of VEEG units are specially trained if you are having this test done in a reputable epilepsy center. I stress that because I do know some hospitals that have the capabilities to video you while concurrently running a EEG bt they are not specialized VEEG units and it is my firm opinion that is where these tests should be done. Last if you are feeling insecure or brushed of by your doctor, or not being giving knowledge you need and are seeking? You're not alone but in a majority. It is the complaint, has often been mine until I found a good epileptologist, that my neurologist gave me just enough informationi to leave me questioning and frightened. In the case of establishing whether or not ou're sz'ing, whether or not you have epilepsy knowlwedge is power in several ways.Let me add to that when I have a prpolonged sz my blood chmistries can and often do change. My blood sugar shots perilously high up, my potassium drops periolously low and I have had dangerous heart arrythmias. If my doctors or the doctors that didin't know me in ER's didn't know I was alreaday firmly diagnosed and treated for epilepsy, my symptoms from a status seizure might have been misread as diabetes, cardiac problems and other inaccurate diagnoses. Instead they were accurately treated as the by product of a prolong or status seizure.Good luck to you. I know this is difficult, particularly in this "what's going on" for sure during this period of time.

RE: RE: New Diagnosis but no proof

I apologize to you. I'm still learning this site and can't figure out right now how to edit my post above. I've had a few sz's this morning and I'm a little fuzzy still I am just realizing. I left some words after proofing AGAIN once it was posted. This is something I tend to do when I think I'm recovered from a sz and I'm not. I double type words or I leave them out. I'm sure you and all will overlook that, but I wanted to explain too.

RE: RE: RE: New Diagnosis but no proof

Dear Gretchen -Thank you so very much for your response. I'm in admin at this University hospital with a top 10 rating - so I feel very comfortable with their treatment.I feel better knowing that there are others out there that have had normal tests, but are still having the symptoms.  My neurologists says that I am having autonomic seizures - so I do have a diagnosis - we just don't know what's causing them.I'm luckier in the fact that they are random and don't happen that frequently (only 7 in 1.5 years), but it would be nicer if I knew why they came about.  Most of these episodes do result in a tightness of chest and great difficulty breathing.  They called the crash cart on Monday.I'll talk to my neurologist about the VEEG.  It would be better to know if I have full blown epilepsy or not.  The tests are performed at the same hospital where I work and should make it a bit easier.Once again, thank you so very much for sharing your story with me. It truly helped.  Hope you feel better later today.

RE: RE: New Diagnosis but no proof

Hi Gretchen (the dog-lover), and the other person who made the original post.I agree with you whole heartedly on this one.  You couldn't have said it better.But, I picked up on something you didn't.  Since I was trained in the ER and as an EMT, She had stated that her seizures last around 10-20 minutes.  Most seizures do not.  The TC may last longer, if it is in status, but general rules state that TCs last somewhere between 2-5 minutes on average, Simple Partial seizures last for 10-35 seconds, Complex Partial seizures last from 1.5-3 minutes, can be slightly longer.  SGTCs last from 3-5 minutes.  Absence last from 5-20 seconds.  Myoclonic are lightening fast, less than a second.  Tonic seizures last from 3-5 minutes.  Clonic seizures last from 3-5 minutes.Auras last a few seconds.I have never heard of this either with her heat spilling out of her body like that.She could have a type of syncope disorder, a cardiac problem, a high blood pressure problem, a messed up system that controls her body temperature, causing her to sweat massively, or NES.She has a stressful job and who knows what at home.I had 4 EEGs that came back ALL abnormal the first time, so there was no doubt about it.2 showed sharp spikes and slowing in the LTL and spiking in the anterior portion of the same lobe.  The other 2 EEGs were showing generalized activty in both hemispheres of my brain.Then when I was in the EMU having the VEEG done, they did another one about 3 days into it, since I was already hooked up, and I seized during the hyperventilation/strobe part of it.So, now, I have 5 abnromal EEGs.That one initiated an Absence.My CTs, MRIs, and PETs were all normal, and that is a common finding in about 80% of people.I am also an active epileptic, but I do respond to some meds.  They did tell me I was intractible, because of that.  I have failed 7 others, and just had one of the two I am on now, increased.I agreee that she needs to fidn out about it and get a handle on it.If it is NES, she needs to find out what the inner source is and correct it with psychiatirc help and counseling, so it stops.Before my visit to the first neuro, in my last state, they thought it was NES with me, and it turns out to be the exact opposite. Hi Gretchen, god luck other person. Keep me posted at can use it too, Gretchen.NAncy