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Everything posted by humbled_pie

  1. I had a similar symptom set and was having what was diagnosed as debilitating migraines (most often "silent"), probably basilar artery type, as often as 3-4 times weekly. The prolonged aura and recovery/postdrome period would bleed into one another such that for months on end I was basically housebound. Beta blockers made my Dysautonomia and POTS so much worse. Adding amitriptyline (sp?!) at bedtime helped only mildly. To be honest, we accidentally stumbled across what has finally mostly cured the silent migraine/aura symptoms. A year and a half ago our family tried an experiment of going gluten free for 2 weeks. We've never had gluten (on purpose) since. When we do, accidentally, each of us immediately has one of our own personal characteristic responses, as we each react to it differently. For me, going gluten free suddenly meant being almost entirely migraine free. Just sharing my personal experience - not suggesting it would necessarily work for anyone else!
  2. My personal solution was not hormone related even though my migraines definitely had a hormonal pattern. I can't say why it worked, only that it did, but going gluten free has left me nearly migraine free. Don't know that it would work for anyone else, but it has been a life saver the past 1.5 years.
  3. A dear friend in Gainesville is looking for a doctor knowledgeable about POTS for her daughter (10 or 11 years old, I think). Anyone?
  4. We've been following his story pretty closely this year. For one, he was only asked to return for one year. Based on how things panned out bit by bit, it seems likely the group knew among themselves for some time this was a final hurrah year for two of the three remaining. They couldn't come to terms with Sam (who had taken Greg's place) based, I believe, on his request for more money and then they had this opening; Greg was doing better, and they asked him to come along. He was only ever asked to sign on for one year; it had nothing to do with his health. In everything else I've read and seen, Greg never states he's been fully healed. Even in this video he only says he's "on top of his health." What he has said, over and over again, is that his condition is *controlled*. Yes, he's been able to come off of medication, but he does still have to take care of himself - and he's spoken to this many times - and he has been closely monitored by his doctor, who last I heard was pleased with his progress. Jeff says "the biggest miracle is that Greg is feeling better." There's a big difference between being healed and feeling better. This is what Greg has to say at GregPage.com about his condition: "My health is much better now due to having a greater understanding of the disorder (Orthostatic Intolerance) and how to manage it appropriately. It is not a curable condition and will always be with me, however, arrangements have been made for it to be managed, to the best possible extent, throughout my period with The Wiggles in a way that will enable me to Wiggle once again and deliver quality children's entertainment for audiences all over the world." I have noticed, among other things, that his page still remains incomplete even though many, many months ago he wrote about it being done soon. My personal suspicion is that part of managing the disorder for him means, as it does for all of us, choosing where and how to spend his energy, and that he has to choose to let some things just go for a while. Fortunately for him, he has a lot more energy than most of us right now...but the demands of touring are surely taxing for him. Personally, I've been delighted to see that he has been so open and honest about everything, even if he's not actively crusading for a cure or awareness instead of Wiggling for a year. My daughters watched the Wiggles - with Greg Page - when they were tiny, and now that my 10 year old's POTS symptoms sometimes rival my own, she's been especially encouraged to hear his story, to know someone out there to whom she relates (or did, years back) "gets" this, and to see that he has been able to get his symptoms under some control, at least for now.
  5. Wow! She must have stopped printing it and now someone has a copy and wants to sell it for a huge profit... I got my copy for $20-25 a couple of months ago. Anyone want to buy it? I'll sell it to you for half price: $500!
  6. Perfect! Thank you for posting this! It was my firm conviction that my symptoms and my daughters' symptoms were actually dysautonomia issues and not truly anxiety issues. When the POTS is mostly under control, so are the anxiety type symptoms. Printing this out for their pediatrician who we see this week!
  7. I haven't seen anyone other than Dr. Abdallah, but I also have no reason to. We originally chose him for our care because there are so few doctors who will see and treat children prior to adolescence and our 10 year old needed to be seen. She's actually not being treated by him at this time, but I am and I really could not be more pleased. I admit I often end up in tears at my appointments, but it is only because after decades of doctors who didn't know what they were talking about (prior to my diagnosis), the validation and comfort - not to mention actual help for my symptoms! - is overwhelming (in a great way) sometimes. Apparently, he makes a lot of his patients cry and he still can't quite understand why. I *love* that he is so *human* and talks to us like that and shares things like that, too! His practice is The Children's Heart Institute, and he only sees patients out of the Reston, VA office now.
  8. Propranolol (beta blocker) did not help my headaches and made my POTS symptoms worse - only no one realized I had POTS at the time. I haven't tried any other beta blockers. (I'm really not entirely sure what finally brought relief to my migraines (several a week), but I do think in part it was going on a gluten free diet. If I accidentally have gluten - ever - my body reacts with a killer migraine within 12 hours. Every time I have had a migraine since going gluten free, I have been able to find "hidden gluten" in something I ate within the last day.)
  9. I'm so glad to hear I am not the only one who selects what they want shared with each doctor. Since I started doing so, I honestly cannot believe how many mistakes are in my records - on top of the so-called diagnoses some doctors have given. I've been reviewing my daughters' geneticist reports this week (evals for H-EDS), and she totally flipped histories and symptoms more than once!
  10. No answers! But I have definitely had this! I've suspected both adrenal involvement and blood sugar issues for myself. What wakes us up naturally in the morning is a drop in blood sugar levels, so I've wondered if my blood sugar was dropping a lot earlier in my sleep cycle and waking me up many hours early. When my gastroparesis symptoms and GERD are at their worst and I am hardly eating during the day, I find the night time waking happens much more often. Don't you "love" it when you present with symptoms that sound like a textbook case of something like low blood sugar/a hypoglycemic attack and your GP stares at you like you're crazy. Ack. That's why I just stopped going to doctors for a long time.
  11. For a month now I've been taking 5 mg of Midodrine four times a day...hoping we'll increase it (the dose) at my follow-up this week. I felt great the week just before my period for the first time in a long time - years probably, but it was the only week all month I felt that good. Personally, I've not had any negative side effects and have definitely noticed some increased energy and decrease in the POTSiness. I'm also normally someone who has to take very small doses of most medications - or at least start with very small doses and build up. I've not had issues with Midodrine, though, for whatever reason. I take Ranitidine (generic Zantac) for the acid, and I take my first Midodrine as soon as I wake up and then take my Zantac an hour or so later and two hours before the next Midodrine.
  12. Unequal pupils can be a symptom of pressure on the brain. Unequal pupils is how they discovered my cousin's daughter's subarachnoid cyst. It can cause severe damage if not treated and it can even be life-threatening. Personally, if the neurologist told me to go to the ER with that symptom, I'd go. Nothing to fool around with! (My cousin's daughter has a shut to drain the cyst now.)
  13. Pretty sure, in my case anyway, that POTS (and the EDS to which it is secondary) led to the deconditioning. Not the other way around.
  14. You can just go to FB and search "Greg Page". He mentions that he "no longer needs medication now" - so clearly meds were a part of his recovery. He's also mentioned that it's not a curable condition and will be with him the rest of his life, but he's learned to manage his symptoms. So he has not just randomly improved. I don't believe he's ever said he had POTS; I think he's always referred to it as Orthostatic Intolerance. Since there are 3 categories of OI, of which POTS is one (according to ndrf) he may not have POTS in particular. But he clearly has some form of Dysautonomia and the symptoms I've seen him list in other articles are very similar to ones I have experienced with POTS.
  15. I follow Greg Page on Facebook and thought I'd share his most recent status update: I've been a bit obsessed with his return to performing since my girls loved the Wiggles when they were small, and now his recovery has been an encouragement to them!
  16. In our case, the Dysautonomia is secondary to Hypermobile Ehlers-Danlos Syndrome, which is genetic. It's all related to our faulty collagen. They got the HEDS from me - and depending on which expert you listen to, anywhere between 30 to 70% of people with HEDS will develop Dysautonomia/POTS in their lifetime. The other issue therein is that while most youth who develop it in adolescence an look forward to a "recovery" when they reach adulthood, for those with EDS, once it develops, it's generally lifelong.
  17. Thanks for the info! I just found a link which describes 5 different types of abnormalities in orthostatic intolerance - POTS is just one type - and how the different types are determined. The link is HERE in case anyone is interested. None of the others describe my daughter either...but I am realizing I've not checked her out in the morning, either, and I suspect her numbers would look a lot different then given how much she's *not* a morning person. Thanks again!
  18. Though we're not new to Dsyautonomia/POTS symptoms - we are still new (and learning) about the actual disorders, etc.! I'm wondering whether someone can have Orthostatic Intolerance *without* the Tachycardia...? My oldest has so many of the same symptoms as my youngest and I (both diagnosed with POTS)... She's always lacked stamina (though it *could* be just the HEDS). But stand her up and you can see her legs turn red (almost purple) from the pooling. She has instances of dizziness and tunnel vision. She does not have the fatigue to the extent that my youngest does (and I do), but has been tired since the day we brought her home for the hospital, I think. She doesn't have the breathlessness we both get from time to time, but she's always asking if she can sit down and rest when we are out and about for any period of time. She has the same triggers - warm weather (though she'd less heat intolerant than either of us), especially when it's humid, standing (which she avoids at all costs) for any length of time, shopping, etc. And her concentration and memory problems are worse than the youngest's...almost as bad as mine. But when we do a "poor man's tilt table" at home (over the course of the last couple of months), only once or twice has there been a rise above 20 in pulse, and that time it only went up 25...(though I don't think I've ever asked her to stand for a full ten minutes). And she is responding well to increased water/Gatorade - though she's certainly not "cured"! So, is there an Orthostatic Intolerance *without* Tachycardia? Since she's not having overt cardiological symptoms, we can't take her to our cardiologist until she has the HEDS diagnosis (at which point she'll need her echo, etc.) and we can talk more about the symptoms then. (The youngest was having palpitations plus horrendous fatigue plus headaches, so the pediatrician felt we were "spot on" taking her to the cardiologist immediately.) Besides...our cardiologist would rather get me stabilized before treating the girls, because he's hopeful that what works for me will work for them. I agree - I'd rather be the guinea pig, and then we'll at least have a good starting place for their treatment so long as they are both functioning *well enough* for now, which they are - for now. I *know* my oldest doesn't feel well and I *know* she's *never* been "normal"...and I believe her when she has the same symptoms we do (though my husband/her dad still struggles sometimes with thinking she's just trying to get attention --- he's still learning, too). I'm just trying to understand the mechanisms behind it all... Many thanks in advance! ~Kari
  19. *Loved* this quote: "Just knowing that what I had had a name, and it wasn't terminal, and it could be treated was wonderful," says Page. "I feel like I'm getting a second chance."
  20. I just wanted to post an introduction... (Please forgive me if this is the wrong place to do so - I may have missed something in the guidelines, etc.) After chasing symptoms, seeing doctor after doctor, test after test, being diagnosed with (and treated for) everything from ADHD - Inattentive Type to "Stress Reaction" to Chronic Fatigue Syndrome to Fibromyalgia to Obsessive Compulsive Disorder (because I must be obsessed to think about my symptoms so much and to spend so much time looking for an answer) to Anxiety Disorder with Panic Attacks...and then just refusing to see doctors entirely (except for meds (for ADHD and allergies) unless I had an acute illness or injury which needed treatment) for well more than two decades...I was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome by a geneticist in February of this year and told to see a cardiologist for POTS symptoms. The two conditions essentially explain my entire life. I've had symptoms from both for as far back as I can remember, with the Dysautonomia waxing and waning, though getting a bit worse each time it cascaded. Then the POTS took a huge nosedive in 2008. No one had any idea what was wrong with me and I was treated for possible "silent migraines". (I was having occasional migraines with aura, but I now recognize all of the other issues were consistent with the POTS.) The treatment from the neurologist to some extent made things worse as it lowered my (already low supine) blood pressure. I only started to improve when I weaned myself off the medications, started exercising fiendishly (after working up to it), and started taking the Adderall again (which I stopped in 2008 thinking it was hurting and not helping the "migraines"). In December/January of this year, my symptoms started to nose dive again with some major stressors in our lives. I started seeing Dr. Abdallah in Reston earlier this month, and after completing all of my various tests, just started my first medication for the POTS yesterday (Midodrine) and will continue to take the Adderall (though at a lower dose) for now. My daughters (10 & 12) have both had symptoms of both the EDS and Dysautonomia nearly all their lives. In fact, it was my youngest's chronic neck pain and daily headaches that took us to the pediatrician in February which is how I ended up at the geneticist. My daughters' doctor suspected it in both of them, but as my history is longer and my symptoms much more apparent/obvious at this age, she told me to go first - making their diagnoses (if I had EDS, which I do) much more clear cut with a 1st degree relative's diagnosis. My youngest has seen Dr. Abdallah once already. All in all, she's steadily improving week by week without medication...but we're heading into summer which is always the worst for all of us, of course. The oldest's symptoms have been less dramatic - yet more daily for a longer period of time. Dr. Abdallah suggested we get my symptoms stabilized with medication and then bring her in. He has seen where families often have similar responses to medications, and is hopeful we'll know exactly what direction to take once he has my symptoms stabilized. So for now, we're using all the non-pharmacological means we can to help them feel better. So thankful for DINET (which is how I learned about Dr. Abdallah in the first place) and for the many resources here! ~Kari
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