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Everything posted by KaciCrochets

  1. I have had the brain zaps, twitching, and adrenaline rushes at night. It can be related to the position your neck/spine is in when you're lying down. If things are wonky it can impede the flow of spinal fluid to the brain. I see an osteopath on a regular basis and that helps. A tiny dose of gabapentin at night also helps.
  2. Good to know it's not just me! I've figured out that mine were caused by my vitamin D supplement. I had been taking it for years without issues and suddenly it started causing anxiety and brain zaps. I had moved in with my parents while we built a new house and I went from soft, filtered water to spring water that had minerals in it, and the minerals messed with my brain. When we moved into our new house we went back to soft, filtered water, but I still can't take the vitamin D without being up all night. I also have issues when my system is overloaded from being in too much pain for too long. I've started taking a muscle relaxant before bed and it helps a lot. @Megan L.I haven't had any recent testing - there are zero dysautonomia docs in my network, they have told me I'm on my own. I used to see a specialist before I had to switch insurance, so I have a hyper POTS diagnosis, but that's as far as I got for any sort of treatment. My PCP is pretty good, though, she at least understands more than most what hyper POTS is.
  3. I have hyper POTS, and when my system is overreacting I practice my CBT and train my brain to immediately calm down after each startle. It's a lot of concentrated relaxation and telling my brain that whatever it's reacting to isn't actually a threat and that I'm safe. It helps, but it takes a lot of concentration.
  4. I particularly like to do things that I don't have to get off the couch for, like crochet or needle felting or beading. But I also paint and craft and sculpt and do macrame and occasionally bake when I feel like getting off the couch. Writing is a good hobby, too, and drawing. I suggest looking on Pinterest to see if there's anything you'd be interesting in learning how to make.
  5. And here I thought I was the only weirdo who had this, lol. The tension buildup to the jerking can be awful. I tend to get it when I've been stressed and my nervous system is mad at me. Those twitches tend to generate from my spine and are relieved with a tiny dose of Flexeril before bed. The other twitches I get start in my head and sometimes even feel like my brain is jerking around inside my skull. Those are generally from too much norepinephrine and are relieved by a tiny dose of Atarax. The real key for me is making sure I spend time every day with my feet up, in deep relaxation. If I can keep my system happy, the rest of my day is fairly functional and nighttime isn't a nightmare.
  6. Your PCP doesn't know jack, don't take anything he says to heart. You can have all sorts of seemingly unrelated issues that are caused by POTS, or one of its comorbidities. Unfortunately, it can be hard finding doctors who are knowledgeable, but don't give up until you succeed. I can tell you 100% your symptoms are NOT in your head, you can't will your way to feeling better, and trying harder often will just make things worse. I, for one, am extremely affected emotionally by my nervous system. If I'm in a flare, if I have too much of this vitamin or that mineral, if I'm under severe stress, if my hormones are swinging - all of these things can send me into spiraling depression or panicked anxiety. Or both. When I'm balanced, I don't have these emotions. This year I've been struggling a ton with my emotional state. Last year at this time I was in the hunt for a new PCP and feeling very much the way you are now. I know it's hard, but hang in there and keep trying, it will be worth it in the end. Don't be afraid to dump doctors who don't believe you. For now, take extra care of yourself. Stay hydrated, get enough salt, strengthen your legs and core, rest, and do what you can to reduce your pain and give your nerves a break. Self care is the priority in a flare. Hang in there!
  7. Oh wow, how awful! I'm glad you're improving. I wish more doctors had a clue about dysautonomia, we go through so much suffering because they don't understand how delicate our systems are and how dire the consequences of imbalance can be. Thanks for sharing your story, I had no idea about vasospasms. Rest up!
  8. I avoid standing still as much as humanly possible. If I have to stand I generally shift my weight back and forth, do mini squats, march in place, etc. Doing leg and core strengthening helps to keep the blood pumping up to my brain better. Flares seriously suck - I've been in one for six weeks now - but stressing about them just makes it worse. Try to relax into your symptoms as much as you're able while you wait to see the specialist. We all understand how sucktacular it is to have all your tests come back normal and doctors telling you it's all in your head. Your symptoms are very real and don't give up until you get a competent doctor. In the meantime, take care of your body and do whatever makes you feel better. Don't push yourself. You will get through this.
  9. My bp is all over the place, too. Whenever I'm at a clinic it's 150+/90+ but at home it's 110s/70s up to 130s/90s. My doctor isn't concerned about it. I have insomnia issues where every time I start to fall asleep I'll get a weird feeling in my head and then have hot flashes, panic, muscle spasms, blah blah blah. My doctor thinks it's from a sudden increase in bp. I think it's related to hormones. I have a muscle relaxer and an antihistamine that I can take but it's not always enough. My doctor doesn't want to give me anything to lower my bp because she's afraid it will go too low. So I just struggle along.
  10. Taking magnesium glycinate helps me with sleep. It's easy to be deficient. Making sure I have the right amount of magnesium, potassium, calcium, salt, and B vitamins is the key for me to remaining functional. If I still can't sleep, I take a small amount of hydroxyzine before bed, which calms the stress hormones. Hope you can get better sleep soon!
  11. ^What she said. Don't let them tell you it's anxiety. You know if you're an anxious person - they don't. My first foray into the POTS world started with docs putting me on anti-anxiety meds, and it was an absolute nightmare. Your symptoms are not mental, they are physical and need to be treated as such.
  12. @Potsfighter374 I take 25 mg of hydroxyzine before bed if I start having adrenaline rushes while trying to sleep. Otherwise I don't take meds at all. I do have supplements that I take, and if anything messes with those I get really out of balance.
  13. Ha, that's funny - my hyper POTS began when I had severe pain from a 9 mm kidney stone. I had POTS issues before that, but low bp and not high, and I never had trouble sleeping or had panic attacks. Interesting.
  14. I've never understood why cardiologists are associated with POTS treatment. POTS is a dysfunction of the autonomic nervous system, not a heart dysfunction. It's like going to a store that sells car batteries when your problem is a broken alternator. They're related, but not the same thing. Fixing heart rate doesn't fix the cause of the issue. I also don't like that it's called POTS because that causes doctors to focus primarily on the orthostatic issues, but we all know POTS causes so many other problems. Sleep and adrenaline are much bigger issues for me than getting dizzy while standing. I think doctors are just really intimidated because POTS is a whole-body problem and our medical system is designed to split everything into one particular area of the body and if something doesn't fit neatly into a box they can't help you.
  15. I have regular and pulsatile tinnitus. My pulsatile tinnitus has been worse lately, in fact I just stopped and paid attention and sure enough, I can hear it. I don't know if it's from the increased stress of the last couple of months or what. I read it could be due to abnormal or excessive movement of the small bones in the ear, which would make sense with EDS because those bones are held in place by connective tissue.
  16. I was told by UW Health that there are no neurologists who will treat POTS patients. However, my primary in Sun Prairie seems to have a decent understanding of hyper POTS. I am usually pretty functional, though, so I don't know how much help she'd be if things hit the fan, but she's willing to help and that's more than I've gotten from neurology.
  17. Does anyone else get brain zaps/electric shocks when they are trying to fall asleep? I know this is a common withdrawal effect from SSRIs, but I don't take those (or really anything else, just hydroxyzine on occasion when I can't sleep because of adrenaline rushes). I didn't get to sleep until 3 am last night because of the constant shocking. Sometimes the shocks come with hot flashes, panic, and adrenaline, sometimes not. Sometimes they cause a muscle twitch, sometimes not. They are really annoying and I have no idea what causes them. All I know is that my sleep has been garbage a lot since the whole pandemic lockdown and I'm so over it.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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!
  23. 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.
  24. 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.
  25. 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.
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