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Everything posted by mama_destiny

  1. For me, my doctor was looking for signs of Multiple Sclerosis, because the symptoms I have also line up that. He had me do a brain mri, all was normal there, so he had me do 3 MRIs, my complete spine, which also showed no evidence for MS. I think they first need to rule things out before giving a Dysautonomia diagnose, if they haven't diagnosed you yet.
  2. Thank you for the responses! I've been looked over for MS this past week, but I don't have that. I still believe it's POTS, as I definitely feel sick and have for over 6 yrs now, all with the tachycardia upon standing. The day of the ttt, my hr didn't stay elevated as it does on some other days. I uploaded a video to youtube closer to my ttt appt. day, of my standing hr, I think I will show my pcp that and see what he thinks at my appt. tomorrow. The numbers are on the lower end in the video, but some days they are all higher, it really depends on the day. Some days I just KNOW I have POTS, and other days I'm back to second guessing everything! 😂 Maybe one of these days I will have a for sure answer to what is happening to my body!
  3. Also, I have had all normal bloodwork on thyroid, and vitamin deficiency, and my heart has been completely evaluated(echo. And holter), and is healthy, no IST.
  4. My resting hr was in the 70s, until she put in my iv and my vein "gushed", then it spiked up to the 90's lol. At home I have an oximeter, but not a BP machine. I've taken a few videos of that to have one hand, but never showed the dr. My hr typically is around 60-70 resting, and the rise is usually 30-40ish bpm, and will go up and down between that range, in one 6min video I took, it was pretty low rates, from 68 laying to 112 standing(and fluctuates between 98 and 112. Another video it goes from 60's to 120's bpm. It just depends on the day. I wasn't very symptomatic at my ttt, and the day before my hr didn't raise above 25bpm increase at all. Mine does go up in the 150's occasionally, but it's not my norm. 125 or under usually and it never climbs indefinitely. Hmmm. Years of searching for answers, and I still have none haha! So frustrating! I'd love to make it to a Dysautonomia specialist, I just need to find the time and funds 😕 none are close to me that I'm aware of.
  5. This was my recent ttt. One dr. said it was suggestive of POTS, but my pcp said we are back to square one looking for answers. I have so many pots symptoms, but I'm confused as ever! Some things I've read say the hr needs to be sustained, but DI.net doesn't mention sustained for the criteria that I'm seeing. Would these readings meet the criteria for pots, or should I start looking elsewhere for my symptoms?
  6. I get this very annoying/scary symptom as well. It's one of the most worrysome for me. It's like the eyes are working in slow motion or something.
  7. My husband has not been supportive a single bit. He has made it clear before that he thinks I am exaggerating, and that I only say I don't feel well to get out of doing housework or other things I don't want to do. It makes me sad. The one person who should be there for me, the one person who could give me a little comfort through it all, doesn't even trust that I am feeling as bad as I explain. He is completely bothered by the fact that I need/want to find a Dr. who can help diagnose and treat me properly. He even fusses about me needing to be on medication. We have the money for it, but he doesn't want to just "blow" money on medicine that I "probably don't need". I have tried having him read more about POTS, and watch the "Changes" POTS video, but he just glances and closes the window. He can't be bothered by any of it. There have been many times that this illness has caused arguments and hurtful words back and fourth between us. Some days I want to to end our marriage so that I don't have to "force" someone to deal with my issues with me, I do feel bad about it. It's tough! My dad on the other hand is very supportive and drives me to keep looking for answers, he can tell when I don't feel well just by talking on the phone with me. He has offered to help me travel/get to a POTS Dr. across the Country. He's great and I am thankful for him, and glad I'm not left to be totally alone through this. I also have my best friend who believes me and helps me more than she knows by just listening and believing me!
  8. I do have low blood pressure, my normal is around 100/60, but I've seen it go down to 87/53. It's Labetalol 100mg that she prescribed me. I haven't taken it yet, though.
  9. Mine started soon after I had my son almost 4yrs ago. I was better during my last pregnancy, but as soon as my son was born( a yr ago), within minutes, I felt it all start up again.
  10. Vertigo, and shortness of breath/feeling like I have forgotten how to breathe, which usualy goes along with bradycardia - it bothers me much more than being tachy.
  11. I was prescribed a Betablocker this past summer by a local Cardiologist, who isn't very familar with POTS. He didn't know that I also deal with Bradycardia, on top of the Tachycardia, so I didn't end up getting th prescription filled out of fear that my HR would get even lower than normal. I went to my primary dr. last week to get back on Lexapro to see if that would help me again(it helped before when I had a major episode, when she diagnosed me with "anxiety/depression" , 2yrs ago), but she suggested Zoloft, since I am still nursing my son. Anyways, I let her know that I was prescribed the betablocker but hadn't filled it, so she wrote me a new prescription for one and said that it should be safe and it shouldn't make my HR go any lower than it normally goes (43bps is the lowest I have seen, just sitting on the couch), since I am young and healthy. Of course, I am still a little hesitant since these two Dr.'s don't know much at all about POTS. My Primary actually asked me what Dysautonomia was...not sure if she was 'testing' me, thinking I was just letting my "anxiety" get the best of me by thinking I had Dysautonomia/POTS, or if she truly didn't know about it? Hmmm. I understand many POTS patients take betablockers, but I just wanted to see if others who also deal with Bradycardia take a Betablocker without issues? Sorry if some of this doesn't make a whole lot of sense, I've got brainfog going on.
  12. I have had 5 pregnancies and 4 live births. I had a missed miscarriage with one baby at 14wks, due to an unknown cause. I didn't know I had POTS yet, but I sure did have the symptoms before(back to the teen yrs, but thought that was my 'normal'), and in the very early months of my last two pregnancies. I was SUPER lethargic, which I went to the ER for, and was told it was just how my body handled those particular pregnancies(my prior pregnancies were not like that). Later though, I felt great, all of my symptoms left, and life was good...until after the delivery, especially my last, this past Jan. The symptoms kicked in RIGHT after I had my son still in the hospital, and the almost fainting/dizzy spells made it to where I couldn't really get out of bed to walk to go to the nursery and got the Social worker called in for me, since my vitals were fine. My husband thought I was faking things, since I was great during pregnancy, but right after I was back to have a million "unrelated" symptoms, lol. Not a good feelind, that's for sure! I think the increase in blood flow that you get during pregnancy is what made me feel so wonderful. Anyways, both of my son's came out healthy along with my middle daughter, but during my last pregnancy, I bled almost daily, the placenta was detatching from the wall. He came out fine though, and we made it full term. My oldest daughter also had Placenta Abruption and is Autistic. They all were full term babies, and are otherwise healthy and happy. I was not on any medication with any of my pregnancies(except prenatal vitamims). My kids also give me a great reason to want to keep pushing forward through all of this. Sometimes I do feel guilty that I can't be 'that' mom who is always on the go with them. A lot of this past summer we have been stuck inside because I can't take the heat, or I'm too dizzy to drive, or I'm just too weak. My dad has been a huge help when I have really bad days/weeks/months, while my husband is at work. Accepting the help is tough, but sometimes it is much needed, and VERY appreciated!
  13. Low liver enzymes here as well... I wondered if it had anything to do with POTS.
  14. I know that I have read about people having breathing problems with POTS, I am just wondering what kind of breathing problems? Is it normal to feel like one has completely forgot how to breathe? Is it possible to stop breathing with POTS/due to POTS? I keep feeling like I cannot remember how to breathe and have to manually inhale and exhale, which gets me all messed up because I either breathe too fast or too slow. My lungs feel like they don't know how to expand enough to get the air that I do inhale. It's such a strange, scary sensation. It's much worse when I am lying down, and I notice my hr drops to high 40's, low 50's, and my bp the other night when I checked while this was happening, was 93/55. Is this a normal POTS thing? It has gotten worse over the past couple of weeks. I have felt like I should probably go to the ER, but then again, they would probably say it's anxiety and send me home with an outrageous bill!
  15. So, I had my follow up with my cardiologist this month about my TTT results, and requested a copy of my "diagnosis" to be sent in the mail. When I was there, he came in and asked me "have you ever heard of POTS?" I said yes. That was why I went in to begin with, because I highly suspect I have POTS. He said that's what he believed I had and prescribed me a Beta Blocker. Anyways, I got the copy of my records in the mail today, and it says: Possible POTS secondary to heart rate exceeding 120bpm w/in 10min of rising. Impression and plan - Tachycardia: Chronic. Otherwise my TTT was neg., because I did not faint. So...I guess this means he actually diagnosed me with straight up Tachycardia? I looked up Tachycardia symptoms, and those of 'just' Tachycardia don't even BEGIN to described my symptoms. Now what? Should I push on and see another Dr. out of state to look more into what's going on, or do I just leave it as it is? This Dr. didn't even realize that my fluctuating body temperature would have anything to do with POTS, which sort of left me feeling like maybe he isn't the right Dr. that I need to be seeing for this.
  16. Sounds a lot like me. I also have lower bp as well as a lower hr while laying. 98/60 being my average bp. My hr. is 43-60 laying, 60-75 sitting, and 85-135 standing...so all over the place!
  17. My BP didn't drop, they didn't tell me what the exact numbers were, but said that my BP went up with my HR. I did not faint during my TTT, I have never fainted before, but have been very close many times. This cardio that diagnosed me, did not do any investigating, just simply said what I have is POTS, and gave me the prescription. He prescribed me Toprol XL, 25mg, but is having me try 1/2 a dose to start with. I am thinking I need to move on from him and find someone more familiar. I asked him about my body temperature fluctuating(sometimes it will be very low, and others it will be a bit high), and he looked at me like I was stupid and said that would have nothing to do with POTS, so I mentioned that it also had to do with the autonomic nervous system, then said Oh, yes, well I guess it could be part of that. I felt like I know more of the basic info on it all than he does.
  18. Yesterday, I was diagnosed with POTS based on my symptoms and my TTT showed my HR was at 124bpm for the 20min duration of the test that I was tilted. Anyways, last night while I was walking at a store, I started to feel strange and my heart felt like it was pounding, so I checked my hr and it was at 50bpm, I kept checking, and it was anywhere from 45bpm-55bpm, while I standing upright, in between walking. Is it possible to have POTS AND Bradycardia? Or is it possible I have something else going on? I was very nervous about going to sleep last night, in fear my hr would drop even more once I laid down/fell asleep. I was prescribed a beta blocker yesterday, but haven't gotten the prescription filled. I am afraid now that it will cause an even lower hr when it drops down. Not sure what I should do?
  19. I get this, too! I have gotten this pain since I was a teen, it almost feels like it's poor circulation or something...when I was younger I thought I might have had a blood clot or something(though I never told my parents about it). Mine get worse when I lay down, and sometimes it feels like they are going numb. It mostly happens in my right side.
  20. Usually 60-65bpm laying, about 70bpm sitting, and when I lay down for bed, it goes down to about 40bpm. Standing is anywhere from 95-125, depending on the day. Today I was in the heat for an hour with my kids outside, so I was up to 135 when I stood, for a few hours after being home.
  21. I have seen in a few posts here about having other tests(besides the TTT)done to determine if one has POTS, I was just wondering what they are?
  22. My symptoms have been present ever since I can remember, back when I was a young child.
  23. I really want to exercise, but I (of course) don't want to overdo it, only to feel worse the rest of the day. What kind of exercises do you do that you find help? Do you do them daily, even on your worst days? I feel like the least I do in general, the worse I feel, so I would like to add some exercise to my day(although I do chase around 4 kids as much as I can throughout the day, lol!). I tried to do the "30 Day Shred" by Jillian Michaels, for a few days a few months ago, and by the end after pushing myself, I thought I was going to have a heart attack, seriously. It was just too much!
  24. Well I haven't been diagnosed yet, but: Fatigue Numbness in a limb or two - often on my right side(is it odd that it's mainly one side affected?) My feet feel kind if squishy my first few steps, not sure if it's POTS related or not? They aren't swollen. Tachycardia Brain fog Lightheaded
  25. For me, pregnancy made me almost 100% symptom free, once morning sickness was over with (my last 2, I had extreme fatigue in the beginning, so bad I was too weak to even sit up and I went to the ER both times and nothing was found, but may have not been POTS... I can't be sure.). I think due to the increased blood flow during pregnancy is what helped me along. I got really bad after having my last baby 4mos. ago, though. Just barely starting to have some decent days here and there. With having said that, I do want to add that I have not officially been diagnosed, but I am pretty certain I have POTS with my symptoms, and my recent TTT showed around 124bpm the entire 20mins I was upright.
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