Ctat333

I use Paragard, the copper IUD. I am extremely sensitive to the extra hormones in bc. I experience horrible side effects, so Paragard is what works best for me. I used hormonal birth control in my teens and early twenties, and that was when my dysautonomia symptoms started, but I never attributed any of my symptoms to birth control. I will be interested to see other responses!

Thank you Bigskyfam and Becia, I appreciate the comfort more than words can express. I have so much stuff that I need to do, but can't bring myself to do it. I just have no energy, and everytime I stand up, I get close to passing out. I am trying to conserve spoons, so to speak, so that I can still take care of my children. I am a SAHM to two beautiful boys, ages 5 and 2, and they need a lot of attention lol. All I can do sometimes is enough to take care of them, and that's it. I feel even worse, because when my husband gets home from work, he has to do the cleaning and the cooking that I was not able to get done. I am lucky that he does what he can to help me without complaint, but I'd be lying if I said it didn't bother me that I don't always pull my weight. Here is hoping for a better tommorow

Today has been a bad day. My body is finally catching up to me after all the Thanksgiving craziness. I promised myself that I wasn't going to overdue it, but of course, that didn't happen lol. My have been in IST on and off today. The highest my heart rate has been while resting has been 134. Right now I'm around 113. Whenever I have had to stand up, it has sky rocketed into the high 150's. I can't breathe, my neck and shoulders hurt, I have a HORRID headache, my brain can't think straight, I'm dizzy, I'm weak, I'm nauseas, and I'm incredibly exhausted. My lower back has spasmed up and is killing me, and my legs are aching something fierce. I have parathesia in my left shoulder, and that is acting up really badly right now too. I keep getting these electrical zings and zaps....not fun. My patience is almost gone. Im trying so hard to hold it together until my husband gets home, but I keep getting after our kids. I feel horrible Its not their fault that I feel bad, but yet I snap at them anyways. I don't know what to do to help myself feel better. I've been resting, I've tried to walk, I've loaded up on fluids, I've tried meditation. I am at the point where I just want to curl up into a bawl and cry. I don't feel good, and there is nothing I can do to fix it. I am counting down the days until I am able to see someone and start trying to get relief. Thanks for letting me vent, and sorry for sounding so depressing. I just feel like I have no where else to go right now, and I'm frustrated and angry.

You will have severe pain with a gallbladder attack in the location you described. I had my gallbladder removed July 2011 after an extremely painful attack. I was in the ER twice within 18 hours, and had surgery scheduled 3 days later. I had extreme nausea and INTENSE pain (worse than labor!!). I could not stand up straight, and had projectile vomiting....TMI, I know lol. They did an ultrasound at the ER, and I was full of stones and sludge. If in doubt, or your are hurting, go get it checked out!!! Hope you start to feel better really soon! ~ Alison ~

Laying down - around 60-65 Sitting up 70-85 Standing Up - 130s Mild exertion - 150+ Currently no treatment and still waiting on official dx.

Sarah, Thank you for the welcome I have not been officially diagnosed with POTS yet. I am currently without insurance, so I am waiting to get that situated before I can go to the doctor for a diagnosis. I have a heart rate monitor and blood pressure cuff that I use daily because of my SVT. I have had dysautonomia symptoms all my life, but the past 5 years or so they have really started increasing in amount and intensity. I found out about POTS after countless hours of researching online because I couldn't get anyone else to believe me or take me seriously. I found out about POTS, gave myself the poor mans ttt, and failed it miserably lol! My mom is a NP, so I had her repeat the test and I had the same results. I have been trying to self treat until I can be seen in February at The Heartbeat Clinic in Dallas for my official diagnosis. Having said all that haha, I was actually diagnosed with SVT by my cardiologist about 6 years ago, when I was 23. So that diagnosis came first, but I believe I have had had POTS longer than SVT. Looking back, I think many of my triggers that started an episode were POTS releated. I never noticed the tachycardia until my first episode when I was 18. I did not have tachycardia all the time, just during an episode. My normal resting hr is around 60-65. Something would trigger me (could be changing positions, bending down, raising my arms above my head, alcohol) and I would get the sensation of a double heartbeat, and then a very long "pause". Then my heart would take off like a race horse, and go from 65 bpm or so to over 250. I would instantly not be able to breathe, start sweating, turn pale, get dizzy and exhausted, and get very confused. These are what I call "episodes." They stopped me in my tracks. An episode could last 15 minute or up to 2 hours. They started out very infrequently, but as I got older, and both times I was pregnant, they increased. I have only had 2 episodes in the last 2 years since my ablation. Dr. Naseem, my EP, did my ablation at Denton Regional in Texas. I hope you get some answers and some relief soon. I know it's so hard. I completely understand the lack of control aspect. Just take it day by day, and be good to yourself. That's all any of us can do, I suppose Wishing you many good days in your future! ~ Alison

I was diagnosed with SVT years ago, after having my first episode at 18 years old, and had runs which landed me in the ER several times. My highest recorded heart rate was 298 bpm. The nurse actually turned off the machine to restart it b/c she didn't believe the numbers lol. SVT episodes are terrifying; I thought I was going to die each time I had one. It literally felt like my heart was about to give out. I had a cardiac ablation 2 years ago, August of 2011. Although my POTS symptoms have increased since the ablation, I have only had 2 SVT episodes since the ablation, and I used to have them daily. I do not regret my decision to have the ablation. It has changed my life incredibly to not have the SVT episodes that I did. POTS *****, no doubt about that, but for me, the SVT was worse. Sorry you are having to deal with this! I know first hand how scary and frustrating it can be.

Same here. I used to LOVE long, hot showers and baths. I can stay in the bath for 5-10 min now before I have to get out from lightheaded ness. I miss it

Thank you all so much for the encouragement. I still wish that I could do it all, but I am learning to take one day at a time. We have made some great memories on the good days, so I am thankful for those. Thank you all again for helping to comfort my heart when I was sad last night

Does anyone else ever feel guilty because you're sick? It's Halloween, and my husband has taken both of our boys trick-or-treating. Today was a bad day for me, and I just don't have the energy to go. I feel like such a bad mom for not going with them, and I am so angry that have to miss out on stuff like this because of how bad I feel. I feel like it's not fair to my boys. There is so much that I miss out on with them, because there are things I just can't do. My heart aches for my babies, and for myself. Sorry for the little rant, but I'm just so frustrated and angry right now!

Hi all! Brand new here, so I wanted to introduce myself to the forum. My name is Alison, and I'm a 29 year old female from Texas. I am not officially diagnosed yet, but am hopefully on the path. I have been having strange symptoms for about 5 years now. I have a heart rate monitor, and regularly keep track of my heart rate. I was diagnosed with SVT years ago, and had a cardiac ablation in August of 2011. Upon standing, my heart rate regularly increases anywhere from 40-50 bpm. I get lightheaded, brain fog, nausea, shaky feeling, and my legs feel very heavy and weak. These symptoms do not go away until I sit back down. I also have GI symptoms that have been steadily increasing over the years. The biggest one that bothers me is the early satiety and lack of appetite. I can go all day without eating, and not feel one hunger pang, when I finally do start to feel hungry, I take a few bites and then feel so full that I am uncomfortable. I have acid reflux, and alternate between constipation and diarrhea. Sometimes, when I am trying to have a bm, my stomach will cramp horribly and I get bad chills and break out in a whole body sweat. I also get the hiccups all the time, but, I don't know if that is related or not. I also seem to have problems with regulating my body's tempature. I have night sweats, and sometimes my body will get so unbelievably cold (even in the middle of our insane Texas summers) that I start to shiver, teeth chatter, and get goosebumps. My husband jokingly calls these my "cold flashes" because they will come out of the blue. I have other symptoms that I am dealing with as well! but the ones I have mentioned, along with the almost debilitating fatigue I experience on a daily basis, bother me the most. I do not have an official diagnosis yet, because I am uninsured and can't afford the doctors visits and test fees. My husband recently found work at a company that offers benefits, but they do not pay any portion of the spouse's insurance, so we cannot afford to add me onto his policy. I am hoping that I will be able to get my own coverage through the healthcare marketplace, so that come January, I will be insured. I can't begin to describe how frustrating it is to be so ill that it's hard to function in day to day life, but not be able to afford care. I am also a stay at home mom with 2 very active young boys that depend on me. I use what strength and energy I do have to make sure they are taken care of, but that usually means there is little left over to take care of myself. I have increased my fluids and electrolytes, and I get in a 10 minute daily walk to pick my oldest up from the bus stop after school each day. Other than that, I have not found any other lifestyle changes I can make without seeing a doctor first. I am so happy to have found this forum. The information offered here is invaluable, and it sure is nice to have other people to talk to who understand what I am going through, and don't think I am just "being lazy" or a hypochondriac. I look forward to getting to know you all on this journey! Love to all, ~ Alison