LisaP63

Sounds like you already have defining literature, but the main Dinet site also has footnotes and links to the medical literature if you need more info. From the DINET "POTS Overview" section: Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising." I hope you find the right medical support to help you with a diagnose and to manage your care!

Hi Lisa, I'm also Lisa? Thanks for sharing your story. I understand and can relate in many ways. Both of my "kids" (23 & 19) have POTS, and I am now being evaluated for it. UGH! Thankfully we have an outstanding doc who has become quite a POTS expert (we're in Oregon NOT near a major city). I go back and forth between trying to accept my health and thinking "what am I doing?! I need to fight harder/advocate/question!" My symptoms are pretty classic POTS (I'm mostly in bed now) but my heart rate doesn't increase enough on standing to classify clearly as POTS. Sadly, as I read your post, I briefly thought "I wish my tests were that conclusive" WHAT??! ? I guess that just shows how desperate we can be for answers! My doc is doing trial tests with me with Fludrocort and Midodrine just trying to knock down symptoms and hone in on what's going on. I'm so sorry you are dealing with all this - there's just no rhyme or reason to it, but I hope you find support and great info here. Keep us updated!

So sorry to hear you're still searching for a diagnosis! I was on Topamax for a couple of years. It was a miracle drug for my migraines! I had to be on a high dose to get the benefit though, and eventually I realized that I couldn't add simple numbers (my kids' reading minutes!). I'm sure I was slowly getting "dopey", but I was coping until I had that scary realization! At that point my doc said it was time to get off it. It's very important to titrate as prescribed by your doc and be patient- you really want that lowest dose that gives you relief! I begged my doc to let me increase quickly on Topamax and it was a mistake... very disoriented, horrible feeling until it leveled out! I also experienced other side effects (including weight loss), but I decided to accept them so I could be out of bed. It's a balancing act...symptoms/meds/job/life. I hope Topamax helps you! Yes, I can relate to the difficulty in what info to give your doc! I went to my kids' specialist (both have POTS) after I got headache relief, b/c I still felt so sick (dizzy, nausea, increased HR , fatigue all worse when sitting and worse standing...) I told him I've had migraines forever, but I feel like this is different- and maybe I've been attributing it all to migraine, but I don't think it is. I told him I wanted him to evaluate for POTS or similar. The doc knows I'm educated about POTS and HE'S THE ONE WHO REFERRED ME TO THIS SITE seven yrs ago when my daughter was diagnosed. I think it's good to be up front with your doc about your suspicions. As long as you don't throw out a bunch of random illnesses and bad sources, I'd hope your doc would appreciate your knowledge. Still I it's always a balance with what info to give, how hard to push, how long to wait for a new med to work, etc. *Just personal experience, but if the Topamax is really for migraine (*not addressing other issues), I'd ask your doc/neurologist about Botox for Migraine. Once you get over the thought of "Botox", it can be amazing. None of the usual side effects possible with the other preventative meds (positive side effect of smooth forehead! ). You have to fit the migraine profile, etc. to be eligible for Botox. Good luck, and keep us updated... your info may help us, too!!

I just discovered a free podcast called "Sleep with Me". It's specifically meant to accompany you through the "DDN" (Deep Dark Night!) and help you fall asleep! It's odd, quirky and not for everyone, but it's helped me! The guy who does it tells you rambling meandering stories that kind of get progressively more far-fetched and boring as the hour progresses! You kind of have to give it a shot to "get it" (check out a few different episodes). It's much more soothing and effective for me than anything else I've tried (A LOT!). I think this guy has really hit on how insomnia messes with you. He's found a really comforting, funny method to help, and I'm now seeing he has quite a following! Best of luck!!

LisaP63 Happy Spring! I'm kind of new here... I've appreciated the site info for a couple of years but recently realized I was missing out not using the forum! Both of my kids have POTS, and I am currently being evaluated for it myself. Daughter Tay, age 23 was diagnosed in 2010 at age 17 (still struggling but will graduate from college in June!). Son W., age 18 was diagnosed in 2011 at age 12 (housebound). I've struggled mightily with progressively worsening chronic migraines since age 12 but recently experienced some major relief with Botox for Migraine. Once I could breath between headaches, I realized something else was going on. I think I've been attributing a lot of symptoms/health issues to migraines when they may be more POTS (or similar)- related. I wound up at my kids' specialist in Feb, got a couple of liters of IV fluids then started on Fludrocort and supplements. My orthostatic tests were borderline, so we're starting with conservative treatment (don't want to assume it's exactly like my kids). I wanted to introduce myself and also ask if anyone here has two or more in the family with POTS/similar. Clearly there's a genetic factor (our doc has quite a handful of sibs with POTS), but wondering what the experience is here and hoping to share info. Thanks everyone!