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19 yo son with syncope, long p-r interval, neg ep study for wpw

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Posted 11/30/2007 10:41 AM (GMT 0)
Hi--

My son has focal epilepsy in the parietal lobe, low blood pressure, and syncope with a long p-r interval.  He recently had a loop recorder removed and an electrophysiological heart study done looking for an extra nerve pathway in the heart and it was negative.  He is tall and thin, his hands are prone to getting cold and sometimes bluish. his bp is 90-60 but he takes sodium and calcium channel blockers for his epilepsy, which lower his salt and electrolytes, so he has to eat a lot of salt and electrollytes or he acts drunk. Anyone with similar problem?  He's wondering what the possible causes of his syncope are.  Sometimes we wonder if the low bp is the cause of the epilepsy, syncope, everything.  Any ideas?  Any similar experiences? Thanks in advance for any help you can give.

Posted 12/1/2007 3:15 AM (GMT 0)
Thanks, will ask
Posted Yesterday 11:21 AM (GMT 0)

Hi Marji,

I have recently had some problems with fainting and lightheadedness.  I'm on all kinds of medications and have had PFO closure.  I had to go to the ER and the dr there thought it might be from meds I'm on. 

I see my cardiologist next week and maybe he will have some answers.  Good luck in finding out what is causing your son's syncope.  You can check his meds and see if any of them will cause the problem.  I'm on several meds for all kinds of problems with nerve damage and back pain and when I checked, 3 of them can cause lightheadedness, low blood pressure and one of them can cause fainting. 

Posted Today 1:47 AM (GMT 0)

Hi, I am so very sorry about your son, he is way too young to be going through this.

I am 34; have Multiple Sclerosis (dx 2001) and another neurological disorder called Multiple System Atrophy (dx 2006).  http://www.ninds.nih.gov/disorders/msa_orthostatic_hypotension/msa_orthostatic_hypotension.htm

I had the initial onset of syncope due to extremely low blood pressure and low heart rate.  For the heart rate which was in the 20's I have a pacemaker but low bp is a constant issue.  I take Proamatine, Florinef and Ritalin to keep my bp at a normal level.  I also have the low potassium levels as my body doesnt retain it...so I take supplements to help.  Also, I am on a high sodium & high protein diet to help aid my bp. 

Have any of your son's doctors mentioned Dysautonomia or tested in this direction?  It is very rare but our brains work (or dont) in strange ways....

Posted Today 7:18 AM (GMT 0)
Elisha--

This sounds just like what my son has!  I'm so glad you posted.  It seemed to worsen at age 17, around puberty slowly getting worse, though he was diagnosed as adhd at 4 and also had an irregular heart beat.  He has focal epilepsy easily found on his first eeg in the p3-p5, focal in the parietal lobe, which is a little strange, usually it is in the temporal lobe, and seems to effect his decision making and learning some.  We don't know if this is being caused by a vascular/low bp problem, they said they'd have to put in an implant to tell.  They gave him fludrocortisone for the low bp, but he was afraid to take it.  his blood pressure has been up to 100 and a little higher lately due to his eating properly and drinking lots of gatorade.  Also his adderall, like your ritalin, helps it.  Sometimes, I think its theonly thing keeping him going! 

The dysautonia sounds like what they tried to treat him for with the fludrocortisone.  I will bring these to the docs attention.  We have liver problems in the family and I don't know if this contributes, but there is also problems on his fathers side with loss of mental capacity with age.  We have a specail type of glycogen storage problem type of diabetes with non-alcoholic steatohepa*** with it that kills many of my family members at a relatively young age with no warning.  I will email my son some of these materials, they may help him.  They thought it might be a vagus nerve problem, but then what is causing that?  It definitely isn't his seizures because they are well controlled,  He also has a bad cough and won't quit smoking, maybe this info will help.  Thanks so so much Elisha, this is definitely something to test for and try to rule out.

Posted Today 2:19 PM (GMT 0)

I really hope they find the cause of your son's problems.  I see a neurologist that treats my MS...but when the symptoms of the autonomic disorder started my neuro was really no help at all.  It actually was my cardiologist who first said that it was dysautonomia and led me in the direction of specialists for testing of it.  I live in Missouri but ended up having to travel to TN where at Vanderbilt University I was able to see a movement disorder specialist and eventually ended up with the MSA diagnosis.  They dont know the cause of why it occurred or how you end up with it and even treating it is difficult.  I also found that a lot of physicians dont look toward dysautonomia when faced with a younger patient who presents with these symptoms/problems.  It tends to be diagnosed in older males, but still very rare.  My mom was adopted so there is no family history to go back too on her side.  On my dad's there is heart disease but no neurological problems.

I have days and even weeks in which my bp is so low I cant function, have confusion, seizures, and the syncope of course.  Like your son, I am so lucky to have my mother who is a nurse and takes care of me when this happens. 

The fludrocortisone (Florinef) which is one of the medications I take also can be scary to be on.  My cardiologist has said that it is a drug that should only be used short time...I am his only patient that has required it for long term.  I havent had problems with any side effects on it other then fluid retention.  So if he needs to take it, he should.  I can totally relate to his adderall keeping him going...if it were not for the Ritalin I wouldnt be able to function or find the strength to get through the day.

I wish you both luck...

Posted 12/4/2007 3:19 AM (GMT 0)
I'm so sorry you have this Elisha, and I wish they would do more testing of my son to find out why he has this problem. He gets blue hands sometimes when the bp is low, esp. on tilt table, but they said his pressure stayed normal during it though his hands turned blue. It didn't make sense. I think this is something that needs to be investigated more because he does go for months where he does ok, then he has a hard time. He has severe memory problems and often thinks things happened that didn't or remembers wrong, or recalls the wrong memory. They think this is because of his medicine, some of it may be from the adhd type symptoms. They gave him the fludrocortisone but he doesn't want to take it, seeing me on prednisone was enough for him. He takes trileptal for his epilepsy, which is a sodium and calcium channel blocker, and he gets really drunk-like when his salt is out of balance. Fortunately, the trileptal has managed his seizures as far as I can tell, he doesn't remember them, and I haven't seen any new bruises or signs he may have had one. We think it might be from the bp, but his bp doesn't get that low when he is not on the epilepsy medicine, at least not that we know of. He has a lot of numbness and pain in his legs and they said he had an abnormal mri of his spine, which also hurts, but then they did a bone scan and other than being bow-legged, it came out normal they say. Does this problem effect vitamin D metabolism like some of the autoimmune diseases do? His red count is a little high and blood thick, sed rate probably high like mine. Its so hard to know what is the medicine and what is him. Do you take meds for your seizures? What do you take? Does fludrocortisone increase seizures? My son's only had a handful or so that we know of in his life, but we really don't know how many he may have had during sleep. I am definitely going to print out something about the dysautonia and bring it to the cardiologist and his pcp. He hasn't had any vision problems and I told him to tell me right away should he get any. His fingers are really clubbed bad and he always has a bad cough due to smoking which he won't quit. Well I will pray for you both and I hope that you go into remission soon or at least get some drugs for the holidays. Again, thank you so so much.
Posted 12/23/2007 12:04 AM (GMT 0)
hi, just read ur post about your son and thought that i would write some of my experiences down, i am due too see a cardiologist nxy week (first appointment) to duscuss a possible cardiac cause for my illness.

in september 2006 i began to have seizures i was 19 years old at the time, i was very fit and healthy and an active typical teenager, i do not smoke or take drugs and i drink occassionally. I was with my friend in a shopping center when i collapsed and had what she described as a grand mal seizure (although i didnt no what it was at the time) i lost contiousness and couldnt rememeber any events sourrounding the seizure. I was taken to hospital by ambulance and while in the ambulance i was put onto an ecg/ekg monitor (i think that my heart tracing may have been abnormal but not too sure) i was then taken into the emergency department and had blood testa a 12 lead ecg/ekg done and it was decided that i was to be admitted for observation. at about 2am a doctor came too examine me and then i was sent for a chest xray (which i found strange surely seizures are neurological or so i thought ha) the next morning when the doctor came to see me he said that he wanted me to stay in for another day and that he will bring me back for an eeg test and an echocardiogram. oh also had a ct scan while in hosp aswell. so went home and came bk for my tests i think my echo was ok and my eeg showed some abnormalities, i continued to have seizures while waiting for these tests. on one occassion actually fell down all the stairs. 

had a seizure while at uni and was brought back to hosp where they told me my eeg showed some abnormalities and they diagnosed me wiv epilepsy? i was started on lamotragine on an increasing dose and also on clobazam, but still continues to have seizures.

one night i had two seizures one after the other without fully regaining contiousness so again i was taken back too accident and emergency and admitted, to a ward. where i stayed for 2 weeks (sooo boring) during these two weeks i continued to have seizures and my medication was increased, on one of the days i was really poorly and had about 17 seizures, i was given lorazepam too stop them. i had an eeg while there and it was normal, doctors decided that i no longer had epilepsy, but when speaking to me and my parents they still didnt seem too sure.

after being discharged home i should of recieved a follow up appontment but never did, but after about another three months i was seizure free, not sure why they stopped but they did for a full 8 months then one night when i was out for my friends birthday, i fell uncontious and had another seizure, i was taken by ambulance to a local hospital and i still hadnt regained contiousness, the doctors decided that i was so uncontious that i needed life support so i was placed on a ventilator and taken up to the intensive care unit. where i remained for two day, luckily i made a good recovery though. then two weeks later i had another seizure while out driving my car, and again woke up in an ambulance (nightmare!!) was taken to hospital and kept in for another week, doctors began to ? epilepsy again for cause of seizures. a doctor came to see me while in hosp and examined me after he did my neuro exam he listened to my heart pulled a strange face and then felt my pulse. but never said anything too me and went away about 10 mins later too nurses arrived to do an ecg/ekg tracing i aked them why and they said the dr asked them to do it. never got any results orr found out why that was done.

its soo annoyiong not to no what is going on, im not allowed in work, i have had my driving license taken off me, i cant go out alone for fear of ending up back in hospital.

they are now exploring a possible cardiac cause for seizures but im not sure what too think anymore

during seizures i

loose contiousness

fall to floor if stood up

shake violently

bite my tongue

sometimes i am incontinent

oh and the paramedics said mt skin is mottled 2?? dont no what that is though really

i have psoriasis

i have had v meningitus in the past

oh and sufer with migranes but other than that im very healthy

i also tend to have low blood pressure usually around 100/60 but does drop too 90/60

my hands and feet are cold alt of the time and i also get numbness in some of my fingers sometimes too dont no if this info is any help but anyone have any ideas what this maybe sorri its soo long but i am desperate and any helpful suggestions will be appreciated thanks x 

 

Posted 12/23/2007 12:54 AM (GMT 0)
Hi--
You sound alot like my son, I think by mottled they mean white with red spots, like a circulation problem. I wonder how much of these problems are caused by vascular problems, like orthostatic low blood pressure. I hope that you get this straightened out and let me know what the cardiologist says. Psoriasis and other autoimmune diseases are so hard to deal with. I have ai disease and I wish you the best with that too and will keep you in my thoughts and prayers.
Posted 12/24/2007 1:48 AM (GMT 0)

Hi USD, I am so very sorry for what your going though.  I completely understand so helpless it feels.  It has been 2 1/2 years since my autonomic disorder began or (showed its head out of the blue) I have just recently been able to start back to work part-time and move out of my mothers into my own apartment...I'm 34.

I have extremely low blood pressure which I take medications for.  When my blood pressure gets too low I will have seizures as you have described in your post.  Aside from the seizures, there have been many days/weeks that have passed I don't even remember when in one of my "down slides" as I called them.  Also, extreme shakiness, incontinence at times and hallucinations.  Certainly not fun at all.

I just recently had a spell two weeks ago, had to go stay at my mom's for a week.  I'm lucky to have an understanding job and a wonderful mother.

I wish you blessed holiday...take care

Posted 12/29/2007 5:17 AM (GMT 0)
Syncope can be caused by several things. The first that comes to mind is dehydration which with position changes causes the blood pressure to drop and heart rate to raise. Syncope can also be caused by lack of oxygen to the brain which also can cause confusion. Do you have an automatic blood pressure cuff? They can be purchased for a reasonable cost at any pharmacy or discount store. They will also check heart rate. Has your son had an O2 sat? I would love to know what your son's b/p  and heart rate is when his hands/feet are cold and mottled.
Posted 12/30/2007 1:48 AM (GMT 0)
We have an automatic cuff but I'm not sure if it does heart rate too or not. I can't ever get the thing to work, I do it the old fashioned way. I think the epilepsy heart and bp are all related somehow and wonder if he just doesn't have a vascular problem that's at the root of everything. I don't know. He lost his insurance so getting any help will have to wait to see if he gets ssi or has to find some way to get health coverage and try to work at something. His bp gets low when his hands and feet are cold and while its still somewhat normal, 80-90/50-60 parts of him seem to get less blood and have lower bp or higher bp. The nurses saw his blue hands and the cardiologist just said the blood was pooling and because he is long and lanky is having trouble getting circulated out of the hands. He doesn't have it all the time, and I can tell when he doesn't take his medicines by how his hands are. The thinner he gets, the worse it is. I don't think he's dehydrated, he drinks a lot of gatorade because of his epilepsy medicine and his bp. Hopefully we will be able to get him checked out at a better medical center where they will actually dx things and try to look into why he has seizures instead of just pushing pills. We have autoimmune disease in the family.
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