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Alex's mumma

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About Alex's mumma

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  • Birthday 04/24/1973

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    trobs1

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    Female
  • Location
    Grimes, IA

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  1. If any of you are on anti depressants (SSRI's or SNRI's) they can be a big cause of very vivid dreams and nightmares! I just tapered both of my daughters off of Prozac due to this side effect! They were having horribly violent nightmares/ night terrors. Many times about killing themselves or killing others- terrible!!! Now that the meds are out of their system, the nightmares are gone! My 16 years old is the POTSie and has always had dreams, which has not changed, but the terrible nightmares are now gone And the dreams are not quite so vivid.
  2. We have tried my POTSie daughter on Vitamin D supplements 3 different times and each time she each time it causes severe Kidney Pain, anyone experience this or have any thoughts about why that would happen? Dr's are at a loss about that side effect or why it would happen.
  3. My daughter takes Trazadone 50mg for the insomnia brought on by POTS. We also diffuse Lavender Essential Oil from Young Living in her room at night. Trazadone is an old old drug classified as an antidepressant but it really isn't used as an antidepressant anymore because it makes people so tired and has to be taken at 300mg+ per day to be effective for depression. 50mg makes my daughter fall right to sleep at remain asleep all night. She started out at 25mg but 50mg is perfect for her. Thugs at have also helped her with insomnia... Essential Oils from Young Living- Peace & Calming blend rubbed on the bottoms of her feet at night, Valor rubbed over her heart and on her wrists, Valerian diffused or rubbed on feet.
  4. Antidepressants (SSRI's) can cause very vivid dreams and nightmares/ night terrors.
  5. The one drug that has helped my daughter more than any other drug for ANY of her POTS symptoms has been Adderall XR 30mg every morning. Has helped immensely with chronic fatigue and brain fog! She tried Concerta first and it made her super dizzy. Not 1 bad side effect with the Adderall XR. Non extended release Adderall gave her too much of a crash when it would wear off.
  6. It is HORRID to get off of, be very careful with this and read all about it before beginning to take it!
  7. Great info SeattleRain!!! Thanks for the post! I had my POTS daughters Vit D levels checked a few months ago expecting them to be super low because this spring my younger non-POTS daughter had her levels drawn after a broken bone and hers were ready low (23). The POTS daughter got POTS April 10, 2012 and was literally bedridden for a couple of months and was outside not more than probably 10 hours total all summer so knowing how low the younger ones levels were when she's outside in the sun a lot more, I expected he POTS daughters Vit D levels to be almost non registering. I began giving her Vit D 3 in low doses (500iu daily) to see if it made any difference in her symptoms...come to find out by process of elimination, the Vit D orally was not making any noticable difference in her symptoms and was in fact making her have severe Kidney pain on both sides that would not subside. After trips to Dr's, ER, CT scans for Kidney Stones and multiple other tests they said here was nothing wrong wih her Kidneys hat they could find. Frustrated (as I usually am after a trip to the ER), I came home and drug out all of her meds and supplements and did more extensive research in them. I got to Vit D - low and behold, found a whole group of people that have experienced the same Kidney pain from Vit D supplements. We stopped the Vit D - each day the Kidney pain was reduced a little. By the 4th day off the Vit D it was 100% gone. I later tried to put her on a multi vitamin with D in it... Ok like the 3rd day she said "mom, are you giving me VitaminD again" because her Kidneys hurt again. CRAZY! At any rate, I have been baffled for for a couple of months about how her Vit D level came back in the 60 until I read your post here. I had been taking her tanning for the several weeks before we had her blood drawn because she was white as a ghost and the homecoming dance was coming up. (So I'm guessing that how her levels got elevated). I'd be curious to know what her levels are now ( I'm guessing low) but I don't want to get blood drawn just for that right now- she's been stuck enough this last 8 months, I think I'll take her back tanning starting tomorrow and see what happens.
  8. One of my daughters most prominent symptoms is syncope, fainting isn't nearly as bad as being bed ridden and having POTS steal your life from you!. On a good day, she faints an average of 5-7 times... On a bad day (which are the days she's literally crawling around because her leg muscles and knees are too weak to held her body up and she's so dizzy she can't safely walk), she has fainted up to 40 times. Full out fainting- complete loss of consciousness! It's not unusual for us to be in a store and she gets that "feeling", knowing she's going to faint and lays down exactly where she's at, no matter what! Kind of funny the appauled looks that I get from people as I stand there looking at something on the shelf completely comfortable with the fact that my 15 year old is unconscious in the middle of the isle!!! Also kind of sad that 19 of every 20 times it happen.... No one says a thing- no one asks if she's ok or if I need help...but that's another deal. She woke up on April 10 of this year and started fainting.... A myriad of seriously debilitating symptoms to follow and have not let up much. She was diagnosed with POTS only 2 weeks after the onset of this maddness (which is a huge blessing), she was almost completely bed ridden for the first month + and had we not pushed and pushed to stay reasonably strong and conditioned, I am confident that she would be in a position very similar to what your describing about yourself. Even on bad days she feels better when she gets up and around as it gets her blood moving in her body. So that all being said... Fainting isn't the worst thing in the world and I can't imagine that your starting down the road to stand & walk will set you back as long as you push to your limit not past it! You can do it... It may not be easy... But it'll be worth it!! Cheering for you!! Also, if your not already doing so, you might want to get a few light tension exercise bands and work your legs and abdominal muscles while you are in bed... That's what she does on her bad days to at least do something. I always figure that anything she does as far as moving, exercising, walking, being mobile in any way she can on any given day is better than doing nothing, which is many days what she FEELS like doing!
  9. Hello there... My 15yo daughter is going to see a Pediatric Cardiologist that does some specialty work with Syncope/ Dysautonaumia in August. I'm convinced that she certainly has something else in addition to POTS going on with her body and wanted to be able to accurately record what is happening with her on a day by day basis in way format that is reasonable easy to use and read... Has anyone created a form or document that you have used to do this kind of thing that I would be willing to share? I can create one, but no need to recreate the wheel if someone has already built something that is been a good tool for them to use for this type of thing!
  10. 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!
  11. So sorry your going through this with both kids... I can't even imagine! My daughter has POTS and one of her majorly out of control symptoms is syncope. She faints all of the time while sitting down. As a matter of fact... On bad days she sometimes faints just rolling over in bed and sometimes faints while laying completely still. Most of the time she now knows when she's going to fai t and quickly sits or lays down wherever she's at (even in the middle of the mall or a Resturant) which is not an easy thing for a 15 year old to do without being emberassed. But preventing a brain injury is something we have really stressed with her so she's gotten used to having to deal with it pretty quickly! My daughter also gets tunnel vision, sometimes black spots I her vision and has a few episodes where she has lost her vision all together for a few minutes at a time. Her pupils also often complete dialate, and this past few weeks has been complaining a LOT about joint pain. She has piles of other symptoms as well, but those that you have explained about your daughter are ones that we experience daily.
  12. 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!
  13. 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!
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