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About KaciCrochets

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  1. My TTT showed I had POTS, but to check for the hyper kind I had a catecholamine test done, to measure my norepinephrine levels upon standing. My levels shot up to over 600, which is the criteria for hyper POTS; however, my doctor said my resting levels weren't high enough so she didn't diagnose me as hyper, even though she admitted my symptoms act exactly like hyper POTS. 🙄 My symptoms are relieved by taking an anticholinergic, so yeah...I have hyper POTS. I've had several doctors try to diagnose me with anxiety but I only have anxiety and panic when I'm symptomatic, so you may want to take a good look and see whether you actually have anxiety or if it's something that comes and goes with your other symptoms. If you don't actually have anxiety the psych med may be doing more harm than good - I know from personal experience. I hope you can get some help from your doctors, hyper POTS is so difficult because so few doctors know anything about it.
  2. I don't have answers, but the same thing happens to me. My bp at home is around 125/78 but at the clinic it's 155/98. The nurses always seem concerned but the doctor never mentions it. I specifically emailed my clinic about it and the nurse forwarded the message off to my doctor but I haven't heard anything since. I"m definitely adrenaline sensitive but I don't know if that's causing the spikes or what. Seizures are outside the realm of my experience but I would hope you would be referred to a good neurologist after what happened during your TTT.
  3. I have that and couldn't handle beta blockers. I tried two and couldn't sleep all night. I don't know if that was related to the branch block, though. I actually didn't know I had it until two months ago when I was looking through old test results. I know my answer isn't particularly helpful, but I didn't want to leave your question with no replies.
  4. I don't suffer a lot from orthostatic symptoms unless I stand still for more than five minutes. My heart rate is rarely tachycardic anymore. But I still can have all kinds of symptoms anyway. Today I was doing just fine and suddenly was hit with nausea, dizziness, headache, premature heartbeats, and was super hot. I chugged some Gatorade and went to lie down, where I was immediately freezing. After several hours and an ibuprofen I feel mostly okay but still have a rotten tension headache. There's no real rhyme or reason for these things sometimes. I exercise daily and haven't had an episode in a long time, I couldn't believe how sick I felt. There are steps we can take for improvement, but it's not a cure by any means. I hope you can find some relief, I can honestly say exercise, as much as I loathe it, helps me the most, followed by staying hydrated.
  5. 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!
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. Healthy people have no idea what it's like to be chronically sick. Her attitude is inexcusable, I'd be writing some complaint letters.
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