Crazy Brain Stuff

[Alex's mumma]

Im pretty new to this forum, my 15yo daughter was healthy and happy as could be when on April 10 this year she woke up to get ready to go to Drivers Ed & school and fainted...Developed an immediate migraine headache, throwing up, and more & more & more fainting. Since April 10th she been hospitalized 3 times, had 7 additional visits to the ER, and numerous office visits and calls to her team of Dr's, missed the last 2 months of her freshman year at school which she is still trying to finish up, had to take a leave of absence from work, drop out of soccer (the love of her life), drop out of drivers ed... Etc. a story probably very familiar to most of you. We do consider ourselves blessed that she was diagnosed 2 weeks after her inital eposide with POTS. She's experienced nearly every symptom listed on this site for POTS in a moderate to severe level and several symptoms over the last 3 months that are not listed.

Thank you to all of you who so activly and regularly post here! Thank you for sharing your stories, successes, failures & struggles! Thank your for sharing the wealh of medical knowledge and education that you have all gone after in an attempt to better your lives and deal with your illnesses. But most of all thank you- each of you for sharing your HOPE! Hope that there is still a life to live with POTS. I cant imagine how many people are like me who silently come to this forum every day searching for answers and of only finding answers but finding Hope!

My daughter has been having another really bad episode for the past 8 days... She was in the hospital Monday because she couldn't keep any food or liquids down and found out she has a UTI so they gave her IV antibiotics for a day and sent us on our way with some oral antibiotics. But she hasn't gotten any better. She's periodically spiking a fever up to 102 and fainted still several times a day. She experienced muscle tremors and spasms so much so that the muscles over her entire body are constantly flexed and all joints locked. She has been having bad joint pain this week, which is new. And this afternoon I was at the grocery store and she text me this..."Mum something is really wrong.. my brains going crazy, migraine, and like crazy rambling, idk whats going on." so my husband goes up to sit with her until I can get home. And she's having episodes after fainting of being unable to speak, but she can write her thoughts, and today she played her clarinet for a while ( which she hasnt played in years). Then other times she wakes up from fainting and just talks crazy and won't respond to me at all... Like she'll count over and over out loud " 123-312-123-312-123-312..." her pupils get huge and stay fixed that way during these episodes. Sometimes she acts crazy like crawling around on her hands and knees acting like a dog or gets michevious and ornery like a 2 year old. Is this POTS for anyone else? Has anyone else experienced this kind of thing? Any thoughts would be greatly appreciated!

[sue1234]

Welcome! I myself have never experienced anything to that extent with my POTS. The only "brain change" I get is due to my hypoglycemia. When my blood sugar gets low, I "unplug" from my environment as I look for sugar/food. My personality changes in the sense that I have a severe problem with mental focus and my brain feels like it is going to "shut down", if that makes any sense.

With her having fevers and infections, I hope that gets sorted out. I was reading a study today that showed that Levaquin can lower blood sugar in those susceptible, so that was my first thought when I read about her getting treated for the UTI.

POTS is hard enough by itself, so I can only imagine how rough it is with her infection. Let us know if you find out any answers!

[CharmedLinz]

Ooooh My I'm sorry you are going through sooo much sooo fast.

My Cousin was originally diagnosed at 14, about 15 years ago, hers hit fast too and she also was a soccer player who had to quit everything and almost died of weight loss before being diagnosed.

She's doing ok now, not great, but ok.

I'm sorry to scare you.... there are a lot of symptoms that can be explain by Autonomic Problems, but these episodes you are describing now with the incoherant speaking and weird doings and fixed pupils.........

I'm not a Doctor or anything but those could be some type of strange seizure, especially with a fever.

I personally would take her to the ER or at least Urgent Care tomorrow, whatever you can get in to fastest.

There are forms of Syncope that can cause seizures, but as far as I know straight POTS doesn't cause these all by itself.

Again just my opinion but with how sudden all this came on and how it's progressing I would think the POTS is being secondary to something else such as a virus or central nervous problem.

Keep us posted.... Sorry I can't offer more.

[Katybug]

Hi there. I haven't experienced this extent of behavioral change from my POTS either. I would absolutely get the doctors involved in this behavior. The things that come to mind that I would be looking into and specifically asking some questions about are:

1) Monitoring her oxygen saturation during these episodes to see if it is from a lack of brain oxygen.

2) EEG for seizure evaluation

3) Could any of her meds be causing these changes (and consider that many meds like SSRI/SNRI affect teens differently than adults.)

4) MRA and MRI of brain to rule out any venous or structural abnormalities.

Good luck to you and your daughter. She's lucky to have a mom like you!

[Christy_D]

Sorry, I can't add any help about the seizure/odd behavior. My son talks incoherently when we try to wake him up. He has complete conversations with us, but they aren't anything we are asking him. That is only when he is coming out of sleep when we have to wake him up though.

My son was also a select soccer player, played year round, outdoor soccer, indoor soccer, futsal. His main love though was baseball. When he had to quit that is when his life as he knew it changed. He had to quit in the 8th grade and he will be a senior this year(homebound schooling).

We will keep your daughter in our prayers!

Christy

[Alex's mumma]

I really hadnt heard or read anything about these kinds of episodes with POTS and I have always bought that while she fits POTS to the T as far as symptoms that she also has something else going on that isn't POTS related. She's had multiple EKG's she has EEG's (and a 24 hour video EEG study done as an inpatient and did have one of these episodes during that study with the altered cognative state for about 30 minutes afterwords. Her neurologist reviewed it twice just to make sure he didn't miss something. He is as confident as can be that she is not having any seizure activity, though I sometimes have doubts about that too with the what her body tremors and shakes when she's fainted sometimes. She's has CT scans and MRI's of both the brain and heart, she had an Echo, 24 hour halter moniter, she's had darn near every test and work up that I can think of and they are all fine. I call her Dr. Every time she has an "odd" episode or some startling new symptom that I can not find as a common symptom of POTS and he always directs me on what to do... Sometimes we ride it out and sometimes he says take her to the ER. But seriously...you all know that going to the ER with POTS is just a waste of time... And they look at you like your insane and do nothing really.

She's current taking metoprolol for the syncope, which has taken her from fainting sometimes up to 40 times a day to under 5 times a day on most days. She has not had a single day in over 3 months that she hasn't fainted. She's taking Prozac, changed from Lexapro... She been on the lexapro for a couple of years but it just wasn't helping much since the onset of POTS. I have her taking magnesium, licorice root, AZO Cranberry, Zofran as needed, Singulair for asthma, & CoQ10.

I don't have a bit of problem asking/ demanding (if needed) that her Dr's work her up for different things but I'm kind of at a loss for what to ask them to do. And have a hard time convincing then what a day in the life of this poor child is like. They just all act like it's all perfectly normal and we're just gonna have to suck it up and deal with it- frustrating!

Thanks for your responses, I appreciate the assurance of what I already suspected!

[CharmedLinz]

See there..... I knew someone would add some input that I had forgotten.

Thanks Sue..... Sue and I share the same type of blood sugar problems.

She's right, I completely forgot.... During extreme low blood sugar episodes my Mother has said that I make no sense when I talk. I also shake uncontrollably and my muscles spasm off and on.

Blood Sugar problems are pretty common, or seem to be, with POTS or Autonomic Issues, so that could be part of it.

You can get a pretty decent blood sugar monitor at any drug store or even wally world for about $15. Strips are expensive but might be worth it to spot check her when she's acting funny.

[Alex's mumma]

Wow... Great input!!!! I will be purchasing a glucose moniter tomorrow to see if we can get any answers that way! May also be purchasing a blood preassure and heart rate moniter to see what both of those are doing during these episodes. Thanks a million!

[peregrine]

I don't have low blood sugar, but I do have a great deal of trouble talking after presyncope (nearly passing out). I slur a bit, have trouble word-finding (more than usual), and have some sort of speech inhibition in the brain. But the rest? Oof. I'm glad you are doing all you can to figure out what's going on there - good luck to both of you!

[anna]

Could she be having some form of hypoxia due to drops in her BP I would ask her Dr's to keep an eye on your daughters oxygen levels after her faints. I note your daughter has asthma really think you need the O2 levels checking when your daughter has these episodes.

Hope you find out what is going on soon.

[issie]

Could she be having some form of hypoxia due to drops in her BP I would ask her Dr's to keep an eye on your daughters oxygen levels

This is a thought, but with POTS - one of the problems is they think we don't get enough blood to our brain and therefore not enough oxygen. If you check the O2 levels they may show good - but, they still could not be good in the brain. Trying to increase blood circulation and O2 to the brain would be important. Also, if there is low blood volume - O2 will show normal - because there is plenty in the amount of blood there - there just isn't enough blood there in the first place or it could be pooling and not circulating properly

With her headaches, you really should have an MRI/MRA done and make sure there isn't something going on in her head - like a tumor or a bleed. I read this yesterday, but didn't recall that she'd had one done.

Issie

[brethor9]

just curious? how long has she been on Prozac and singulair??? my son is 10 and has to take meds for his autism I know when trialling many of the meds we got to see some pretty scary reactions.....one drug made him so paranoid and creeping that he was stalking....once we took him off the drug he was fine. Also singulair can cause strange reactions especially in younger people. If your daughter has just started these meds recently it may be worth talking to your pharmacist about drug side effects.....hugs and hope you get to the bottom of it....

Bren

[jpjd59]

So sorry to hear you are going through this. My 23 year old daughter also has POTS (and we believe, and she is being tested now for, some sort of mast cell activation issue also). I am impressed how soon you were able to get your daughter diagnosed!!!

My daughter doesn't have seizures but shes does frequently say that her brain feels like it is on fire. I wish I could help you. I know how scary this is. I'll keep your daughter and your family in my thoughts and prayers.