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Everything posted by navyblue

  1. I actually felt about the best I've ever felt with POTS on a summer roadtrip all over the West Coast with my boyfriend. Maybe it was all the salty food. Maybe it was the happiness. But it went great! Roadtrips are awesome. I was sooo worried before it that I'd be dizzy and wouldn't feel good and would ruin it but aside from one dicey night at a campground it was amazing and healing.
  2. I have Medicaid but they didn't cover the regular MRI I had (this was before the chiro) so I don't have much hope there
  3. Hmmm, that is actually really good advice but I don't think I could ever scrape up the funds for an upright MRI...would the atlas adjustment theoretically free up the nerve or blood vessel impingement? I guess that is a question for someone with xray vision into my neck haha. I didn't feel dizzy directly after the adjustment, just pressurized and off...the dizziness that I often feel with POTS came on strongly a couple of weeks afterwards
  4. Hello, So I had a bad experience with a chiropractic neck cracking manipulation - it has left me with increased head pressure, brain fog, and dizziness..however even though she seemed to have messed it up I do think she was onto something with saying my neck felt off...my POTS symptoms did, after all, begin a week after a whiplash/concussion-type skiing accident. So I've been doing a lot of research and found something called Atlas Orthogonal, which is a non-manipulative non-invasive technique that take xrays to see if your atlas is off and then a gentle machine pushes it back into place. I have heard really good things about this, but I am wary, especially as regular chiropractic usually doesn't make people feel terrible and it made me feel terrible, so I'm not sure if this would have a good effect or not. But I have to try something. I'm really suffering and I feel the key is the neck. I read a coupe positive things about Atlas Orthogonal on here, especially from @AShelton80, but I was wondering if anyone else has tried it or what you all think.
  5. Weird, I was just thinking about posting a similar post. I'm also struggling with a setback and with what seems to me a lack of understanding on the part of those close to me. I did it. I finished my college classes and I have my degree in Biology. I even got all A's last quarter. And yet, I feel so mixed up because it's time to get that first job and it's just a lot to deal with, because I feel that no one understands the extent of how awful and dysfunctional I feel. No one understands how I feel like the lightheadedness, head pressure, and fogginess seem to increasing with no signs of leaving...I mentioned to my friend today about how my heart rate was around 130 just hanging around the house and she goes "from generalized anxiety?" I about slapped her (obviously I didn't haha but mentally). She knows about POTS, I've explained it to her in the past. I don't understand why people jump to these explanations..I heard her asking her boyfriend recently "Tourette's is from anxiety though, right?" because he was talking about tics. My boyfriend too recently revealed he STILL thinks my problem is mainly psychosomatic from "researching too much on the internet" even though I've shown him with my pulse reader what my heartrate does. That really hurts. When he had the flu I took such good care of him (even though I had it too, I'm just used to powering through feeling bad), but I just don't feel cared for or supported in this. My mom and dad also use language like "why are you doing this again" when things get worse. And I also don't think people realize my complaining and venting happen when I'm really at my breaking point with this stuff. I don't think they realize that I'm dealing with these feelings 24/7 and usually do a decent job acting normal. They think because I'm smiling in some pictures from a vacation that it means I felt good on that trip - when it fact, grateful as I am for still being able to take trips, I felt pretty awful through most of it. They think because I aced a final exam (again, very grateful) that I wasn't feeling like my head was floating in the clouds and like I was on a boat the whole time. I guess I just want some sort of acknowledgement of the fact that I overcome these feelings every single day because the first thing someone seems to say to me if I vent about feeling bad is that I need to do a better job ignoring things and controlling my reaction to symptoms. But then, I have to remind myself, nobody's out to get me. Nobody is intending to make me feel miserable or misunderstood. People normally want to "fix" things and when they can't, they seem to resort to telling you that it isn't that bad or something like that. It's only natural. I guess I don't have much else to say except that I really get it.
  6. I'm so so so tired of this. And I'm not even sure if I can attribute my issues to the POTS anymore. I'm enraged that a chiropractic neck manipulation has set off such anxiety and head pressure and horrible feelings. I've read several accounts online of people whom post neck manipulation - felt woozy, head pressurized, how I do....- and it went on for years with no end in sight. Then there's the people for whom it only worsened things for awhile. And the vast majority of the population for whom it had no ill effects or even helped headaches, dizziness, etc. I'm so mad because I was doing pretty well before she did it. Now I'm in the throes of terrible head pressure (and intermittent numb left leg) and I don't know when this will end. I feel like I can't do my schoolwork. I'm not eating much. I don't want to listen to music or do anything enjoyable. I know I should just take my mind off it. I even felt pretty okay last night. But those accounts...they haunt me. Mostly I'm just so extremely sick of freaking out about my health and getting depressed from it and making myself worse and the unknown. Last winter I hit rock bottom when I couldn't figure out why I was dizzy. Eventually it started to get better and I started to calm down and live my life. I started to realize that the "me" was not gone, the me who could laugh or get an A on a final or enjoy a meal out or a road trip. I went through so many different things I thought it could be. Once I knew it was POTS (even though I don't know the cause), I was sad about it for a little bit but then mostly happy that I finally had my answer and that it was known to wax and wane, could get better, and wasn't known as progressive. I did a lot of research and felt more in control. I went through a lot of worry about Chronic Fatigue Syndrome about 2 months ago with increased tiredness but it didn't really get worse, if anything it got more manageable. But this feels different. I'm feeling utterly lost and I can't shake the fact that the chiro messed me up...and I wouldn't care so much if there weren't so many accounts of it being permanent I'm sorry for how gloomy I sound but I just need to feel like I can go on I always feel like such a wimp when I see the posts of people who've suffered much worse and longer but I just...I put a lot of pressure on myself to do well in school, to be fun to be around, to be liked, to enjoy life....and this just makes it really really hard. I feel like I'm a weak person. This vent I guess was more for me, but I really would appreciate any advice/support.
  7. statesof, what kind of physical actions made you feel worse for a bit?
  8. Thank you! The reason I worry is that a couple people have said in the past that the effect was quite long term....but for others it seemed to just cause a flare-up or even help. Everyone is different I guess
  9. So aside from fatigue concerns I've been doing pretty well these past couple months - no dizziness. (I have POTS). Until...last Thursday I went to chiropractor because I had heard that she did Lyme testing...however she did exam me and said the top of my neck was very out of alignment and that she wanted to do some quick adjustments. She said they would be gentle so I said yes. She cracked my neck to both sides and then did something to my back. I think it's made me worse. Not dizzy exactly, but sore neck, woozy pressurized head...it was pretty bad earlier today...also numbness down my left leg. Is this worsening going to be temporary or did she really mess something up structurally? Does anyone have any experience?
  10. Resurrecting this because I've having the exact same issue. Anyone else?
  11. All I can say is you're not alone. Hang in there, hopefully things will improve.
  12. sleepy_lady, that is exactly how I feel! My dizziness morphed into intense fatigue. How are you now?
  13. Here's the post I wrote about it when it was happening. http://forums.dinet.org/index.php?/topic/27112-feeling-potsy-but-without-the-heart-rate-changes-anymore/#entry252071
  14. This has happened to me before. Sometimes feeling worse does correlate with higher HR's and sometimes it doesn't. So strange! Currently I am experiencing barely any dizziness, but a ton of fatigue...I never know what to think.
  15. I feel really strange. I've been markedly more fatigued over this past week, very low energy. Everytime I go out to do something I feel like a blanket of tiredness and especially a mental fog. I don't think I've really experienced something this extensive with my POTS before, and I'm really worried about it. What's so weird is I don't actually have any dizziness or orthostatic/POTSey symptoms. Just this dense fatigue that I feel unsure about whether it will go. Has anyone ever had this happen? Did you find out why? Did you get your baseline energy back, or did it stay that way?
  16. Stellaluna, the way you describe how you think (what is the cause, is this the new normal, etc.), is exactly how I think too! These past couple days, some unusually bad fatigue has hit me despite getting 10 hrs. of sleep a night and all I can think is WHY WHY WHY, and IS THIS THE NEW NORMAL. I've never been that "in the moment, one day at a time" person...ever. I always seem to think I'm on the edge of some descent into horror. I'm thankful for the forum too. Hope everyone is having a good Christmas Eve!
  17. I've read just about every internet source on POTS there is. Some define it as an increase of 30 bpm or more within the first 10 minutes of standing from a supine position (so, like, anytime in those 10 minutes). Others seem to imply that's it's not to be measured right away. Mine will usually shoot up to something crazy like 130 right away (like a couple seconds after standing), but will then quickly go down to mid-90s and sometimes even mid-80s, then will inch its way back up to the 100's and stay around there for the next 10 mins or so. The big increase is sooo shortlived that I wonder if it even matters/is worth recording, if that makes any sense. What do you all experience/ think? I've not had a TTT.
  18. Fainting only occurs in 33% of those with POTS. Haha this is probably not the place to compare #'s with "normal" people, but I do believe there was a post here a while back where someone did an experiment with doing the poor man's tilt test with a pulse reader on all their friends /relatives, etc. and there were a few people who met the POTS definition without having symptoms...I've looked around for it a bit, but can't find it. MomtoGiuliana is correct that the medical definition is an increase of 30 or more. Was inspired to do my own just now Laying - 82 Right away standing - 128 1 min - 96 2 min - 81 (??) 5 min- 112 10 min - 115 Lay back down - 67 Stood again just for fun - 130 (wow...I swear I didn't get up too fast) I don't know how much I trust this pulse oximeter I have, to be honest. That was some weird fluctuating. I've never fainted in my life. I didn't feel faint during this test either, just some initial heart pounding and kinda blood pooling in feet feeling.
  19. You are stronger than you think. My advice: get on an exercise program regardless...it has helped me a lot with heart rates and symptom control.
  20. I eat normally. Probiotic is really helpful, more good gut bacteria will do some of the work of digesting for you . I drink a lot of Kefir. Helps.
  21. Anybody else too? So weird. I def have the POTS heart rate changes, but my dizziness seems a lot more noticeable sitting and lying down than standing/walking/running. It's like my bed is a boat and when I sit like I'm moving back and forth. It used to be more pronounced when walking, then it kind of took a holiday for a while but then came back in this weird way.
  22. This is so weird...yeah that happened to me for about a month straight about 6 months ago....I never figured it out. Sometimes hiccups instead of belching.
  23. I push myself and I think it helps. Even if standing hr is 130 or so, for me standing for longer and moving around helps a bit. Dishes had piled up in the sink last night- huge amount of them, and initially I was gonna sit on a stool and do them all. Then I thought "no! I'm not going to set a precedent for doing that." So I turned on some tunes, stood up to do them, and ending up standing for about half an hour doing them and jamming out (I made sure to keep moving my legs). Not only was I okay, it was psychologically good for me.
  24. I have a lamp that's supposed to imitate the sun. I forgot about that, it helps too.
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