Syncope patient misdiagnosed with epilepsy

Have you ever suffered an unexplained BLACKOUT? Are you FAINTING frequently and your doctor cannot explain why? Maybe you have been diagnosed with EPILEPSY?
Listen to this SYNCOPE patient's story about how she was MISDIAGNOSED and often woke-up in hospital after passing out. World renowned consultant cardiologist, Dr Adam Fitzpatrick suggested the "tilt test", which indicated she had LOW BLOOD PRESSURE - a vital sign of syncope, which is a heart rhythm disorder.
For more information on syncope and reflex anoxic seizures, please visit www.stars.org.uk

[@ssmccue]

Ten years of grand mal seziures that started at age 35; diagnosed with epilepsy, medicated yet still had seizures. I met with so many specialists. Finally met with a cardiologist who induced a tilt table test in which a seizure was induced within five minutes. Diagnosed with "vasovagal syncope" and low blood pressure -- I've taken a salt tablet every day for ten years -- no seizures. Life changing! I'm convinced my seizures happened when I was overheated, under-hydrated due to low BP.

[@markanthony9264]

Hello there. Me, 20 years of grand mal seizures. Getting worse and I'm really starting to believe it's this type of syncope. I am now good at feeling them come on and it feels like I'm about to faint because I feel a sense of weakness seconds before the seizure/faint happens. Been thinking it might be POTS for sometime. What type of salt tablets to you take? How many grams and how often?

[@coolfix948]

@@markanthony9264 for me it's stress since I was a kid , stress and abandonment , salt and cooling down really helps , small portions of food , managing your childhood trauma is important

[@roszac2698]

Hai provato dall audiologo?potrebbe essere una sindrome di Meniere o lermoyez

[@Dayasultana]

What is BP? I think I have a similar case so grateful to find this video

[@michelleh6176]

@@Dayasultanablood pressure

[@FlimsyCucomungo]

that’s a great point, if you faint during the TTT you will recall and remember that feeling for life. i now sit down and take care of myself better than ever, just wish people were more understanding as i am a young man, so it can seem strange…

[@ArrhythmiaAlliance]

Thank you for watching the video and for your response, if you would like further support or advice regarding TTT, please feel free to visit: www.stars.org.uk

[@djmax2572]

WOW!! THANK U SO VERY MUCH FOR SHARING. I JUST GOT DIAGNOSED W EPILEPSY. BUT I DONT QUITE BELIEVE IT....

[@simonahendy8022]

Hi Suzanne Hagen I hope you have found a solution...but if you haven't demand a tilt test! And also make sure they find out what the triggers to your fainting are through are tests, they will have to rule out a cardia problem, epilepsy and a neurological problem. Very often the cause is low blood pressure. Particularly the sudden pressure drop, but on your case it seems triggered by strain. However researche fainting, vasovagal, vasovagal syncope, vasovagal reflex, vasovagal response etc I found that it helps to know and understand more. I was in hell for long but when I found the right doctors who ran the right tests it finally led to a diagnosis. I wish you the best!

[@sherellecampbell4036]

Thank you for this. I am 23 years old and I have been fainting since 2009. Doctors can't figure out why. I have seen internal specialist, cardiologist, neurologist, and endocrinologist, No one can figure out why. I have low blood pressure. Every day I feel the symptoms. I eat well and exercise. One of my fainting episodes occurred while I was on my motorcycle and I crashed into a wall. In november the endocrinologist put me in the hospital on a 72 hour fast. I was unable to eat for 3 days. It was torture. On the second day I blacked out in the shower and hit my head. I just want answers. Its not a nice way to live. My life feels so unpredictable because it can happen at any time. I hope I find answers one day.

[@PennyParkerTV]

Did you figure out what it was?

[@ashpro94]

Hi Sherene did you end up finding out what it was? Please let me know because I want answers for a family member, they are experiencing exactly the same since mid last year

[@sherellecampbell4036]

@@ashpro94 No. But they believe it is due to low blood pressure.

[@ashpro94]

@@sherellecampbell4036 Thanks Sherelle. I hope you feel better soon. And although I'm no doctor, since you have low blood pressure I think taking prescription meds to lower blood pressure will help relieve your symptoms, and eventually stop the fainting spells.

[@nataliemarie1671]

That or orthostatic hypotension

[@jeanettedevereux7664]

GP.... was ace..... good work.

[@stephaniea3936]

I was 10 years old and started having blackout spells , my parents took me to the dr. who then sent me to a neurologist and after having several EEG's said I was having epilepsy seizures. I was put on Dilantin, this med. never helped my blackouts they continued for years. I split my chin open a few times, these fainting spells would occur under any circumstance I took Dilantin until I was pregnant with my 1st child I figured they weren't helping me so why take them. I was 19 . I begged my primary dr. to please find out what was wrong with me. he put me on some other med. still did not stop the fainting spells. At 40 years old I went to a cardiologist who gave me a tilt table test it was positive for NCS. I then had a Pacemaker implanted , I am on my second Pacemaker at 65 years old. The downside is my cardiologist said that the Pacemaker might not stop the faint, but will help with recovery. So now I just live with it.

[@nathanbrett9067]

I fell off my bike 6 months ago and had a seizure bitten tongue etc. But tests showed I'm not epileptic. Now suspect heart rythem waiting for 24 hour ECG. Only difference I feel is dizzy if I bend down then backup, like tieing shoe laces. Very worrying as I was cycling by canal

[@FMGfootballmadgamer]

I go all dizzy/light headed and sleepy when having needles and also have epilepsy, however my epilepsy was confirmed by a test :/

[@ArrhythmiaAlliance]

Thank you for your message, you may find our Reflex Anoxic Vasovagal Syncope booklet helpful to download from the STARS webpage: www.heartrhythmalliance.org/stars/uk/for-patients

[@SuperButterfly217]

It's still hard for me because I still have fainting spells and my blood pressure goes up, but my body still shakes and I become confused. My hope is that there will be more information on this topic soon.

[@jeanettedevereux7664]

Same here....I had 2.....no epilepsy 2005 and 2014......

[@bigbadjohnpesek9894]

I have cough syncope. I have seizures at least once a day if not more. I can't drive anymore cause I never know when they will hit. My doctors pretty much told me there is nothing that can be done. So I am on disability and my wife has to do all the driving.

[@fpbsix]

june 2017 fainted , august fainted doctor treated me for epilepsy , than every 4 th month i would just fall dec -2017 april 2018 august 2018 broke 3 disks in my back , dec 2018 , passed out , so I went to another doctor , i have BP 195/110 - 102 .. i am now going to have a loopier monitor inserted , in feb 2019 .but they still dont know what is making me lose conscious for a second .

[@FIBROMOM]

Hi there, any answers now?

[@fpbsix]

@@FIBROMOM yes it was my heart just stopping . i had never herd of it before but apparently it is common , i now have a pacemaker since 1`4 feb 2019 .

[@gandharvk]

did pacemaker stop the fainting / seizure like episodes?

[@sarasen8147]

I was wondering what tablets -from America-which she took?? Im in this situation-would like to know.

[@StephyGrowsWeed]

deplin? I believe she called it deplin

[@bornawake4483]

I just heard tablets I know of many people with Ehlers Danlose syndrome of which POTS and dysautonomia where the blood pressure is very low and they take salt tablets.

[@sarasen8147]

@@bornawake4483 Thats very interesting, thanks. I thought she was the lady in the paper years ago (married to a famous football player) who had low blood pressure but Gutron raised her blood pressure and helped her situation.Maybe thats the same drug but different trade name.

[@bornawake4483]

@@sarasen8147 Could be, I had not heard about this lady. Might be similar to raise the BP.

[@sarasen8147]

@@bornawake4483 yes-its in the paper that it raised the BP very gently which is what helped her. :-)

[@austinrichards6687]

Same

[@suzihagen]

Thank you. I'm going through something similar, but I faint (and possibly seize) while exercising. I bite my tongue hard. I had every test and was told it was "probably" epilepsy. I didn't buy it and refused the meds. I haven't had the tilt test. Was your blood pressure measured before the tilt test? Mine seems fine. I would really like an answer to what is going on with me. Thank you.

[@Autumn33]

Did you ever figure it out?

[@suzihagen]

@@Autumn33 Yes! Each time I passed out/fainted/lost consciousness, the only telltale sign was low blood sugar. I was told there is a very rare condition, a tumor (usually on the pancreas,) that creates insulin, causing your blood sugar to drop to dangerous levels. I was told I most likely do NOT have this tumor, it is so rare. Doctors always asked if I was in the health field. They thought I was injecting myself with insulin. I finally found a Facebook group (!) of people either suspecting this tumor or confirmed. The name of this tumor is an insulinoma. I had several MRI/CT scans and an endoscopy to look at my pancreas. Trouble is, it's a weird organ and hard to see these sometimes tiny tumors. The Facebook group moderator is great and has a list of resources, including doctors who specialize in finding insulinomas. Lucky for me, one doc was in Ft. Myers, where I lived at the time. I emailed him, and he replied. I was dumbfounded. He set up an appointment for me, sent me to Moffitt Cancer Center in Tampa. They were excellent. Had another endoscopy done and the tumor was found. Within a week, I was at the hospital having a third of my pancreas and spleen removed. I am at high risk for developing diabetes now, but so far I'm just fine.

[@myyoutube7144]

@@suzihagen amazing story! Congratulations. Happy they found the tumor

[@t.o903]

Is this dangerous condition? I think this is why this is happening to me. If I fix my blood pressure I should stop collapsing and shaking?

[@ArrhythmiaAlliance]

Hello, there is further information in our 'Living with low blood pressure' booklet which can be found here: heartrhythmalliance.org/stars/uk/low-blood-pressure-hypotension If you have any questions or concerns please feel free to contact our Patient Services Team on 01789 867 503 or email: [e-mail]

[@margiecarter2096]

Why do you call seizure a fit

[@joannathesinger770]

Different countries, different expressions.

[@steamhelsing9440]

who me?