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About KaciCrochets

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  1. By shocks, I mean just that - electric shocks. Often they will travel and cause a muscle spasm or myoclonic jerk, but not always. The shocks originate sometimes in the back of my skull and sometimes elsewhere down my spine. I don't get attacks quite like you describe, but I do get adrenaline rushes sometimes that can mess me up for days. Thanks, p8d!
  2. I've discovered that drinking Gatorade before I get ready for bed cuts way down or eliminates the spinal shocks that keep me from falling asleep. Last night I forgot to drink some and oh boy! My question is, are there better alternatives to Gatorade? I don't like the dyes and I am not sure if I actually need the sugar. I do not want to make my own so no recipes, please.
  3. I have hyper POTS and was living with few symptoms for three years, until I had a bad flare in August. My life has never been normal, like I have never been able to hold down a job, but I am generally functional most of the time and until recently no one would have guessed I am chronically ill. I don't know if hyper POTS can go into remission, but it can definitely become something I forget I even have.
  4. Thank you for sharing, @outofadream. It makes me feel less alone to know others go through this, too. I still haven't managed to get any medical help but I figured out if I take ibuprofen during the day to keep my pain under control, and chug some Gatorade before I get ready for bed, I don't have shocks and surges that keep me up at night (and therefore don't have anxiety and panic). I am sure some of my issues recently are due to midlife hormonal changes, but if I can keep my nervous system calm while I go through it I hope to keep these emotional episodes to a minimum.
  5. When I am symptomatic enough that I'm not sleeping, I will get nausea. A couple of weeks ago I could barely eat anything for days. Calming my nervous system in general also calms my GI issues. I think one of the biggest problems with POTS is that there are so few doctors who treat the whole system, you just get specialists who only treat one system and ignore the rest. It really is all interconnected.
  6. I have three children. With all three I had horrible tension headaches and had to take a muscle relaxant until I gave birth, but other than that I was just fine. In fact, my vertigo and hot flashes went away due to the increased blood volume. My son likely has POTS but if he exercises and doesn't just sit in front of the computer all day, he's fine. He works a job where he's on his feet for hours. He knows to drink Gatorade when he starts feeling symptoms. So far he has not needed medical intervention. My daughters have no sign of having POTS. That being said, my symptoms have never been terrible until middle age, and I still do not have much in the way of orthostatic issues. If my POTS was bad I might think twice about having children.
  7. Sleep problems are my biggest symptom. I am tired and ready to go to sleep but then I get brain shocks and adrenaline rushes, and I don't fall asleep for hours. Last night I got four hours, after spending twenty minutes crying from adrenaline and anxiety. Doctors refuse to even look into it. I don't have the tachycardia like you do but I have some irregular heartbeats. My symptoms are always worse lying down than being upright.
  8. I waited seven months to see my dysautonomia doc. Thanks to insurance changes I can no longer see her so I got a referral to neurology a month ago and they are still triaging so I don't even have an appointment yet. They don't have any doctors that treat POTS so I'm afraid they won't make an appointment for me at all, even though I am having new symptoms that could be anything from neuropathy to a brain tumor, not necessarily POTS. I am about to schedule with a therapist to talk about how I have these unbearable symptoms and nobody will help me. At least I know I will be able to get an appointment with psychiatry.
  9. Healthy people have no idea what it's like to be chronically sick. Her attitude is inexcusable, I'd be writing some complaint letters.
  10. @lieze I'm sorry you get this too, but it makes me feel better to know I'm not the only one. I've had a good week and spent a lot of time doing CBT and trying to work through my deepest fears (pretty much all health and doctor related, I wonder why? 🙄) so when I get a bad flare I won't be so triggered. Last night was the first bad night in a week and I'm really jittery this morning. I practiced my CBT during the surges last night. It kept me from spiraling but sure doesn't make the anxiety feel any more comfortable. It's still there even without anything to be anxious about. I spent 25 years of my life being depressed and I think I prefer that to this. At least with depression I could sleep.
  11. The short answer is that profit is more important than people here. All of our systems are very broken and getting worse, but our politicians work for their corporate donors and not their constituents so nothing gets fixed.
  12. This is the first bad flare I've had so I can't really vote, but I do not have mast cell issues. I do have fall allergies but nothing major, just sneezing and runny nose, I don't even need OTC meds for it. Temperature and humidity seem to make my symptoms worse, maybe due to inflammation?
  13. I've been in a flare since the middle of August. I don't normally flare more than a couple of days but oh boy, this one's been long and brutal. I read on one of my Facebook groups that practically everyone with chronic illness is struggling right now. Hopefully this will pass soon, hang in there.
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