Jump to content

Canadiangirl73

Members
  • Posts

    107
  • Joined

  • Last visited

Everything posted by Canadiangirl73

  1. For me, there is no correlation between how I feel and what my standing HR is. I had a confirmation of this yet again not long ago. A couple of weeks back I wasn't feeling well, so I checked my vitals. They were perfect! My BP was great and my standing HR was 69 (which kind of scared me LOL!). The very next day, I was full of energy but my standing HR was 141. Go figure... All I can think is that the tachy compensates for something else that's at play.
  2. I'm so sorry you're going through this. I can somewhat relate and I'm sure others can too. I was friends with this woman for 19 years prior to my becoming ill and she cut all ties once I was sick. Was I hurt and angry? Sure I was, but I actually gained strength from this experience. This reaffirmed that I was the same person, I had the same soul (I won't let this condition alter it!) and if she couldn't see that, then it is her own issues. Who needs fair weather 'friends'? Don't let this incident doubt who you are. You are a strong person to be dealing with this illness and I can tell you're kind from the lovely words you told others on here on other posts. Chronic illness makes us swing back and forth from being selfless to being selfish at times. I think this is the time for you to think about yourself first and foremost. Take care of yourself and forget about this so-called future physician who will have terrible bedside manners! ((hugs))
  3. I hope you're feeling better. Wow! I can't imagine taking an exam while being sick on top of having dysautonomia. As K&ajsmom said, you are brave! Nevertheless, I would have tried to enlighten my teacher by bringing them documentation on POTS and showing them my racing HR. I think more ppl need to be informed on this invisible illness. And maybe they would have been more indulgent if they had known what you have been going through. Maybe no exceptions didn't include illness, especially when you can prove you're sick. Sometimes people's reaction can positively surprise us once they're informed.
  4. Thank you for your answers! It makes a lot of sense now that I think about it. The last time I had severe tachycardia in the middle of the night (166) was back in July, right before I bumped up my dose of Metoprolol. Also, I know take my last dose as late as I possibly can before going to bed. If only the BB could get rid of the other symptoms... I know lorazepam doesn't help since I tried in the past. They're just very frequent lately. Every half hour last night. I'm exhausted but hopeful they will stop. The more upright I am during the day, the more acute the surges are at night, so I think I just have to my adrenaline built up in my system.
  5. Diamond, I'm sorry you're going through this. I get the chest pains too whether I'm brady (low 40s) or tachy whilst standing up. Did you check your BP when your HR drops? I went through a period when my pulse pressure was very narrow (under 10) and my HR wasn't really compensating. This coincided with a dose increase of my BB. It took a month for my body to adjust but it eventually did. I get loads of arrhythmias, as I mentioned in my previous posts (NSVT, SVT, bigeminy, PACs and PVCs), and was told they were benign because of their nature or duration and that my heart was structurally sound. UGH! I never had ANY before the onset of my dysautonomia and my resting HR back then, sitting, was in the low 60s. So to me, this is related to my dysautonomia. Being told me heart is structurally sound doesn't help me deal with these nasty beats on a daily basis though. Now, I get bigeminy (normal sinus beat, PVC, normal sinus beat, PVC, etc.) when I get severe brady (lying down) or alter the venous return to my heart by bearing down for instance. My GP and cardiologists explained that the QT interval, the ventricular repolarization (PVCs originate from the ventricles), lengthens when your HR slows down, leaving time for one of those pesky extra beats to sneak in. Impaired venous return is also a cause of those. Since we have blood pooling and stuff, and our vitals organs are too often already deprived of oxygen, this causes chest pains.
  6. Hello all, For some odd reason my computer won't allow me to use the "enter" button so I can't brake my text into different paragraphs. So I was wondering if it's possible to have adrenal surges without tachycardia. I've been in a relapse for a while now and been having a huge flare-up since Saturday. I was trimming the Christmas tree on that day and wasn't wearing any compression garments, which I usually always do, and my HR really spiked. I've been feeling really lousy since and a new kind of adrenal surge started Sunday at the wee hours of the morning. I've been having them like clockwork every night since. In the past when I used to get them, two things were different: I had tachycardia and didn't have "weird beats" (my heart was beating funny when I woke up Monday morning). So when I wake up, I feel startled, sense of impending doom, my palms are clammy, I have terrible chest pressure in the sternal area (feels like someone is inflating an iron balloon under my sternum) and my BP is really high (139/119). What is also odd is that I'm brady before I go to bed (high 40s) so I wonder if my HR doesn't drop any lower while I'm sleeping and my body is trying to correct this. Also, since my baseline HR is so low maybe that's why I don't get the tachycardia I usually get when those happen? Also, they happen between 3 and 4 am and then again around 6 am. Any thoughts?
  7. I don't think I get "anxious" but I do get a bit apprehensive when I go out. If there's a lot of people around me or load music it does a number on my ANS. Fluorescent lights make me ill too, So I dread going some places because I know I will eventually feel unwell. I don't go out or drive alone because I know the outside stimuli will make my condition worse.
  8. I forgot! They started well before I was put on any medication so in my case, I think it's POTS not side effects.
  9. I get twitches but they feel like something is crawling under my skin. I get them everywhere but they're most annoying when they're located in the sternal area because I always think at first my heart is pounding or beating funny. I don't get hose often but tend to get them when I have a flare-up.
  10. I developed numbness of my tongue last night! It doesn't tingle but it is numb, as if I went to the dentist and they froze my mouth. I can barely taste or smell anything and, no, I don't have a cold that could explain this. I'm having a real flare-up since Saturday so I'm not sure if it's part of it... I've never had this happen before. In your case, did you eat something new? Could be a sign of an allergy. Do you have any other unusual symptoms?
  11. While I have an easy time falling asleep I dread sleeping. If I don't wake up startled, other horrible symptoms happen when I sleep: full blown adrenal surges, tachy, chest pressure, waking up gasping for air (the scariest so far), severe abdominal cramps, etc. So my sleep is almost always interrupted. Like some others mentioned, it does cross my mind that my ANS will just give out while I'm sleeping, especially when I get brady (in the 40s) before I go to bed.
  12. I also have some documented irregular rhythms which I was told are benign because of their nature and/or duration. Three EPs at a cardiac facility where I live ,who know little about dysautonomia, told me they are most likely related. However, when I saw a POTS specialist he told me this wasn't the typical presentation for POTS patients for they only have sinus tach. IMHO, I believe they are one and the same. I NEVER had a flutter, a skipped beat, or any other weird heart beat that I could feel until two months after the onset of my dysautonomia (very acute onset). Also, I notice my irregular rhythms can go away for weeks and then come back to annoy me for a while when my other POTS symptoms are very bothersome. As far as inverted T-waves are concerned, I get those too from time to time. I recently had a chance to review all my ECGs (a whole lot!!!) and noticed flat or inverted T-waves when my POTS symptoms were intense. I also had ECGs performed a few minutes apart first lying down, then standing up. Guess what? My T-waves get inverted when I stand up but are fine when I lie down. That is not a coincidence. I dug deeper and discovered it is a common finding in POTS patients. Here's a study I came across: http://www.ncbi.nlm.nih.gov/pubmed/17617070
  13. hippychick - I'm glad things are improving. I remember reading a while back you were completely bedridden and unable to sit or stand. Good to hear you can take a few steps! futurehope - I had all but good intentions when I started this post. I'm sorry if it came across as a way to compare myself to others; that was not my goal. However, as soon as two people share thoughts, ideas, experiences and struggles chances are they will either find similarities or differences, and there is nothing wrong in either case. You are right: some have left the forum since I started reading it because they got better. And I do know for a fact that everyone's case is unique. However, I also know that some are still on here and are able to jog, go shopping and work. Maybe I should have been more specific in my post and asked if those people gradually built up to that activity level, was it medications that helped them, etc. Indeed, I won't "gain" any immediate benefit from others' answers but my post is no different than asking if one is still able to drive, exercise or work. The only "benefit" could be attributed to learning from others' experiences and grab tips along the way. Also, it just makes dysautonomia, something we all have in common, a less lonely place...
  14. I was wondering if many on here are able to walk long distances. I'm mostly housebound a walk short distances around the house. When I go out I have to use a wheelchair since the crippling chest pains and shortness of breath kick in very quickly. I was actually in cardiac rehab earlier this year so I know I can walk between 120 to 180 m before my symptoms stop me in my tracks. Wish I could walk for hours like I used to! Thanks!
  15. Yes to all. However, they seem to get dryer when my symptoms are more acute, so to me there is a clear connection. When my symptoms started, my hair was extremely dry and my eyes burned so much from the lack of moisture that I thought at first the oxygen they were giving me was sneaking out of my nose and drying my eyes out. Nope! Just plain dysautonomia, It usually is one of my first symptoms when I have a flare-up.
  16. I've been dealing with POTS for close to a year and a half and noticed that the intensity, duration and nature of my symptoms seem to follow a yearly cycle. Just wondering if anybody else noticed the same pattern.
  17. I went to the ER when I first got my symptoms and was actually admitted so they could find out what was wrong with me. This allowed me to free myself from the initial anxiety diagnosis I was given and get diagnosed by an EP who was on call and worked at Heart Institute in same building as hospital I was in. Now, I just go if my HR won't come down at all and is really elevated (so I can get IV fluids) or have other rhythm issues. Otherwise I ride out the symptoms at home.
  18. It is a tie between adrenal surges and cardiorespiratory symptoms (chest pain, shortness of breath, arrhythmias)
  19. I seem to go back and forth from being cold and hot all day long. I absolutely no longer sweat anymore but my skin turns red and feels really hot to the touch. A few hours later I can be very cold: my feet and hands are freezing and cannot be warmed up in spite of wearing layers and being under the blankets.
  20. I decided to label them all "neurological" but some might not fall in this category. Since I've had POTS, I have had the following odd symptoms and was wondering if anyone else experience those as well and brought them up to their physician's attention. I personally chose to not mention it to my PCP since she always brushes things off as being part of dysautonomia or looks at me as if I were a talking unicorn So here they are, in no particular order: 1- Burning muscles: my biceps burn almost constantly but the sensation increases while typing, holding something (even very light, like a phone), etc. The burning subsides over night but comes back as soon as I wake up. This feeling is strictly in my biceps, no where else. 2- Strange "motion" feelings: a) I feel as if the floor sinks underneath me, should I be lying, sitting or standing; When I'm lying down, I get this quick rocking feeling from side to side as if I were lying on the peek of a roof and going side to side extremely fast. This happens at any time during the day and oddly never when I'm falling asleep; c) I also have these "choppy'' feelings in my head that resemble the pattern of a strobe light. 3- Inner tremors: they feel like strong shivers that start from my toes and go all the way to my head in a nano-second, yet I'm not cold and don't have goosebumps, they are actually inner tremors. This seems to happen after I've been more active,so I wonder if it's not related to adrenaline. I did have CT-scans and MRIs of my brain as well as EEGs that all came back normal. However, I wasn't getting those sensations while I underwent the exams. I also do not take anti-depressants (I know that some people who take them and go through withdrawal can get brain "zaps" similar to what I describe under C). I never feel dizzy or faint when these sensations come on either. Hope this doesn't sound too weird... Thanks.
  21. My symptoms also get worse around the time of ovulation and actually get better a few days into my period.
  22. I have a prolonged QT interval and from my understanding POTS or other forms of dysautonomia don't cause one to develop it. There are two kinds of Long QT Syndrome: inherited and acquired. So you're either born with it or you develop it if you have scarring on your heart from a heart attack for instance, have electrolyte imbalances or take some medications that have the potential of prolonging the QT interval. Also, in anyone the QT interval shortens with tachycardia and gets longer with bradycardia. Hope that helps!
  23. Hi and welcome, I also had slightly elevated cardiac enzymes last year and it was caused by perimyocarditis (a virus inflamed my heart). I was told that an elevated HR for a long period of time can also cause them to be increased. As others suggested, I believe it would be interesting to know what your levels were and what the results of all those tests are also. I find it a bit odd that the physician didn't want to expand on the topic. BTW, they also found a "mass" on my liver that was determined to be an hemangioma following a CT-scan, an ultrasound and a MRI of my liver. At the time I was stressed out by that finding and found all the tests to be tiring but I'm happy they determined it was a hemangioma and is benign. Did they tell you if what you have is the same thing?
  24. I take Metoprolol 12.5 mg three times a day. I try to eat a lot of salt too and drink plenty of fluids.
  25. My heart rate drops in the 40s when I sleep and was told it is a normal phenomenon. The last Holter report had a hourly breakdown of my heart rate which showed it constantly goes back and forth from 40s to low 100s when I'm asleep. I was told it can only be explained by autonomic dysfunction. No wonder I no longer sleep well and never feel refreshed in the morning since my HR more than doubles non stop when I'm asleep.
×
×
  • Create New...