heart arrythmia/seizure disorder

[Cheri65]

Hi. My daughter had a closed head injury at the age of 3, which  resulted in multiple seizures (grand mal) and a heart arythmia. It seemed at first that she had epilepsy, and wsa trated for years on phenobarbitol, dilantin and Tegretol, none of which subsided the seizures. Then she was told she may have a vasal vagal reflux disorder, and that was triggering the seizures. she was taken off of the seizure medication and placed on inderol to control her heart. The seizures subsided, going from 2-3 a week to 2-3 per month, then slowing to 5 a year. Her doctor said she may outgrow them, or they could get worse during puberty. She will be 15 in June this year, and she has had 2 seizures in the last week. Her symptoms are first a severe sudden headache to the side of the head, and the feeling that someone is sitting on her chest and putting a pillow over her face. She says she can't breathe and gasps for air, then becomes unconscious and has grand mal seizures (tonic-clonic) with thrashing mostly on her right extremities. She is extremely tired after these episodes and wants to sleep for 2-3 hours afterwards. I have been told by doctors that these are "breath holding" spells. that she has "learned" to jerk for attention, and thatr her heart has nothing to do with the seizures. I know what a seizure is, she is not "faking" it, as a matter of fact she is unaware of what is happening until she wakes up, and even then she is confused for several minutes. Please help me if you can, direct me to whom I should contact and how she should be treated.

[austintx]

I came across your forum last night.  I am somewhat relieved to learn my daughter is not the only one.  She also has symtoms like you described.  Only difference will be the lack of  seizures with the symtoms.  SHe will pass out from 10 min to sometimes more than an hour.  When it first started 2 1/ 2years ago,  School nurse thought it was an epilepsy.  but, neurologist tests showed it was not.  Cardiologist could not find any abnormality with her heart function any more than usual.  She was born with heart defect and her corrective surgery gave her heart murmer, PVC, and arrythmia in ventricular side but not a techacardia and not life threatening.  She went onto see an EP has 2 ablation done with no success.  EP labled her Cardiogenic syncope but her cardiologist is convinced it is caused by her heart.  She went through every test.   The episode comes on without any pattern.  Only saving grace is that she can feel it comming.  Headache, heaviness on her head and difficulty breathing.  She is almost 19 and she is driving.  She mostly uses surface road so, she can pull over.  She went off to college last fall but did not make it.  She left after 1 semester eith about 20 ER  visits and ambulance rides. College could not deal with it.  She was disrupting class with EMT visits.  She had too many absence in her classes they could not give her credit.  She is back home and attending Community College.  It is not without challenge but state school has better system to deal with disability like hers.  I can sympathize with what you are going through.  Every test my daughter eveer took came out borderline.  Tilting test, Asthma, diabetes.  Our latest thing is visit to endocrinologist.  Few of the EMT has discovered her bloodsugar was very low when she had an episode.  But, not always.  We are trying to check if she is Hypoglycemic.  It involves 4 days of hospital stay on IV only.  They will bring down her bloodsugar to see how she reacts.  I am not 100% convinced to go through this since all the lab work came back normal and her blood sugar level looked ok.  My next step is Nurologist again.  Cardiologist thinks if it is nurological, she had many spisodes last 2 1/2 years, maybe they can now see some sort of damage.  We have been in and out of doctors office  local to far, No relief.  My daughter's life is in mass, family is always on alert.  I jump everytime my phone rings.  Only good news ot of this?  I met few people who a family member with same condition.  all has natural arrythmia had same symtoms with no relief from the medicines or diagnosis.  They are in their 40's.  Symtoms are gone.  It disappears as sudden as it came.  Now they all are married living a normal life.  That has been a final diagnosis for my daughter also from her EP.  It is a life time away for 18 years old.  If you come across some doctor or treatment, please share with me.

[Lee9709]

I am very curious about what your childs final diagnosis is.  My son  2 1/2 years ago(13), at the onset of puberty, started having absence seizues.  He was placed on Depokote XR with out sucess.  He was then placed on Ethosuximide, which did not help any.  We then sought out a Pediatric Neurologist who placed him on Lamictal which still did nothing.  The Dr then placed him on Keppra with the Lamictal.  After 3 weeks he had only one absence seizure, but then he had his first gran mal seizure.  That was in August 07, he was in the shower.  He continued to have some absence seizures, but with exercise and showers he would have a gran mal's.  We saw a pattern with the exercise and hot showers, we stopped his sports.  Now he just has gran mal in showers or immediatly after .  I am a nurse, and I just felt very concerned that this could be something else.  I searched on the internet and found that arrythmias and other syncopes could cause seizures in some people, so I requested my pediatrician to order a Cardiac work up.  My son did have migraine type headaches after running and playing when he was little, from maybe 5 until right before we noticed him having absence seizures.  The cardiologist feels he may have a condition called Neurocardiogenic syncope.  Which is a imbalance between the parasympathetic and sympathetic nervous systems. which causes a vaso reponce, low BP, and low heart rate, pooling of blood to the lower extremities.  We have done EKG, Holter Monitor, Echocardiogram, all normal which the Dr said would probably be.  He is going to have his Tilt Table test4/8/08.  He has had several episodes where we have caught him in the shower being confused, because we watch him like a hawk!!!!!  We get him out, sit him down, then after a few minutes we get him to his bed and lay him down and after 8-10 min he comes back to himself.  No gran mal or ictal state. We sow are cathing these  Does your daughter drink very much,  we noticed our son is not drinking very much.  For about a week we pushed water on him, and the episodes went away, but now I am letting him do what he normally does because of this test scheduled.  I want to get him off this epilepsy meds if he doesn't need them, because they are not controlling his seizures.  The Cardiologist,and the articles I read said that some are misdiagnoised with epilepsy.  He also had Topomax added after the gran mal's started, and with all 3 meds at one time he still had gran mal's with exercise and showers. I am sorry for this being so lengthy, but yours is the first case that I have read that sounds like my sons.  Please let me know how your daughter's tilt table turns out.  Like your daughter his life has been totally changed and he can't drive as well, or play basketballl or track, which he loves.....and I too have felt so frustrated because the Pediatric neurologist recommended a Vagus Nerve Stimulatator, and really did not take time to listen as the cardiologist did.  Thanks

[Cheri65]

Thank you for your insight. I tlked to her doctor yesterday, and after another seizure and a blood pressure of 73/47, pulse at 48 we went into the hospital. She is only 14, 5'2" and 100lbs. I was told this is a VERY low blood pressure and pulse for her. When she stands up, however, her pulse increases to 105, with blood pressure slightly elevated to 82/64. She is going in for an echo, tilt-table test, and an eeg today, and they are putting her on a holter monitor to see if her heart  problem is related to this or if they are 2 seperate issues. Poor kid wants to take drivers ed, but will be quite some time yet. I just want to fix this.....getting frustrated....hope to find some answers soon.

[Abhijeet Deshmukh, MD]

Hi.

Going by the history, we can not tell if these are grand mal or partial seizures. Since she has the seizures mostly on the right side, these could be complex partial seizures with secondary generalization.

A history of previous seizures in childhood is very significant. I would suggest you get a video EEG done. Assure your daughter that she will be fine. You can get a second opinion if you wish. It is important to know the exact type of the seizure for appropriate treatment.

Regards

[brainpain]

im sorry that doctor is so stupied,to think she could fake seizures.ive had grandmal seizures a very long time.there is no way anyone could fake that.i would jerk and black out .have you seen a neou surgon?he can treat her and work with a heart doctor to.has she had a seizure test to conferm her seizures do exist? as well as i can rember it a eeg  it will make her have a seizure but they can tell where in the brain there comming from.for a doctor to say shes faking for attention is crazy.i dont believe anyone could or would have the enegery to do that.i would honestly find a new doctor a good neou.wis you both the best