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Trach

Does This Sound Like Pots To You?

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One of my best friends has a son who will be 16 in May. Several months ago he told his mom that he was "losing time in class". She really did not know what he meant until he was driving with his dad last month, lost control of the car and went up on the curb. He later told his mom he did not remember what happened when he was driving the car, and it was the exact feeling he has when he " loses time" in class.

Other than febrile seizures and allergies, my friend's son has been healthy. He plays on the high school baseball team and is a bright student.

My friend took her son to a new pediatric neurologist. The doctor diagnosed him with POTS based on the poor mans tilt. My friend did not think her son's pulse went up more than 30 beats, but he is starting to have fatigue, mild headaches, and mild digestive issues. His EEG was clear. The doctor just wants to add fluids and salt. His mom is concerned about finding a cause of the " lost time", because he will be driving in May.

I have a few questions:

1). Have any of you had this symptom of " lost time"? Is this a pre syncope condition? I had a friend who did the same thing years ago but she had epilepsy.

2). The "POTS like symptoms" started after his first round of allergy shots. Could the shots have triggered anything? The doctor says no.

Any input would be greatly appreciated!

Thanks,

Trish

Your input would be greatly appreciated. Something just

2)

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To me that sounds 100% like absence seizures. I am no expert but I have read about them before and the symptoms are basically zoning out completely for a short amount of time. He probably needs a 24 hour eeg to catch it. I wouldn't give up on an epilepsy diagnosis yet.

Edited by corina

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I agree, I'm thinking seizure too.

Edited by corina

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That is what I thought too. Have any of you seen this with POTS? The episodes are only happening every few months, so I don't know if he needs to be induced to have an "episode" in a 24 hour monitoring unit. (my sister has epilepsy and that is what the docs used to do to her).

I know we are just "talking" and not recommending medical treatment at all. But POTS doesn't seem to fit this diagnosis. The doctor who diagnosed the child is very young, but has a reputation for being smart and open minded. The doctor also works in the same office with a great doctor who has knowledge of POTS.

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It could also be narcolepsy. She should see if she can get both a nighttime and daytime sleep study completed on him. (It is the daytime study that would dx narcolepsy, but, the nighttime study could give them other info including if he has any seizure activity at night. Mine also showed that I get tachycardia in my sleep but not during REM, so its not from scar dreams.)

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The "losing time" does not seem to be a symptom tied to POTS, at least not from my research on POTS. It sounds like he is having seizures. It could be possible he does have POTS too, although I wouldn't blame his "losing time" on POTS. Is your sister going to have your son do a tilt table test? It has been known for some people who have epilepsy to have a normal EEG simply because they had the EEG when they weren't having a seizure.

How did the doctors induce the seizures in your sister?

I have episodes of "losing time". It usually only 30 seconds to a minute or so, but it is long enough that I can tell time has changed, but I don't remember what happened in between. The EEG I had in the past was normal. I have a lot of other neurological disorders, so I am more inclined to believe that my episodes of losing time are being caused by something else, rather than my POTS.

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It's really weird but the doctor said a tilt test was not needed. My daughter's doctor is in the same office, but she is on vacation for two weeks. I trust my daughter's doctor with my life. So I am going to have them see her.

My daughter was diagnosed with vaso vagal when she started passing out and the cardiologist said she did not want to put my daughter through the misery of a tilt table. Looking back, if only the doctor would have pursed the TTT we would have not have had so many problems a few months later. I should have spoken up and asked if fainting while sitting made a difference.

Forever tired, I have have a call into my sister to find out how the docs induced a seizure and will let you know.

Thanks for all the advice everyone!

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My daughter had a few episodes of losing time while in class. She said she would hear the beginning of a lecture and then the end but couldn't remember anything else said or done during the time period. When she was being evaluated for POTS last May at the Mayo they asked her how much time she thought had passed that she couldn't account for. She said about half an hour. She felt that she was not asleep but had a sort of passed out feeling but remained seated in an upright position. The Mayo told us that in her case since it was a half an hour of time that it was most likely related to her POTS. They commented that seizures tend to come in short time spans like seconds to minutes. For her, treating her POTS has helped this symptom. She's only had it once since starting treatment for her POTS. What you are describing for this young man, especially the blanking out while driving certainly sounds like an evaluation for seizures would be warranted.

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