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Kham

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Everything posted by Kham

  1. Yes, I definitely get this a LOT! On one of my holter monitor tests my pulse went down to 39. I absolutely feel horrible when my heart rate is at 50 or below. I called my cardiologist about it this week and he said, "Wear your compression garments and eat lots of salt, stay hydrated." Gee, thanks...lol! The nurse said with dysautonomia I will just days days that are not so good and to rest on those days.
  2. Cardio doc said this is part of the joy of Dysautonomia. Eat more salt, wear compression garments and rest until it passes.
  3. Thanks Corina, I have a call into my cardiologist. Hopefully they can help.
  4. Ever since yesterday I have been weak and feel like all the blood has fallen from my face. My bp is good for me right now...about 103/60. But my pulse has been around 49-51 and I feel like absolute crap. Anyone else ever deal with this? Should I be concerned?
  5. Thank you everyone so much for your replies. I see my cardiologist tomorrow so I will update you on what he says. I truly do appreciate all the support. What a great forum:)
  6. So, apparently I'm weird. Not a shocker...lol! My bp always runs on the low side. Recently I was put on two different meds and told to watch out because it might make my bp even lower. The first is tizanadine for my EDS which help with my muscle twitches at night. (It does help btw.) The next is propranolol for my PVC's. (kinda helps) Anyway, my bp has not gone down it has gone to almost normal. It's been running about 115/75. My energy is a bit better but I have been having horrible sadness, crying & wanting to withdrawl from everything. I absolutely would rather deal with my low bp. I wonder if since my autonomic system is wacky that these meds affect me in the exact opposite way they would "normal" people? Anyone have experience with this?
  7. badhbt, it does remind me a bit of the type of breathing my children get after a good cry (or fit). but, it's just one sudden breath not a bunch. the more I read everyone's posts I do think that I might unknowingly hold my breath and then my body has to readjust. it happens sometimes when I am really concentrating on something too. seems there are a lot of us with this problem. certainly there is some medical resources out there?
  8. A couple of times a day (mostly when I'm relaxing) I will suddenly have a breath that takes me by surprise. Like all the sudden I take a quick gasp of air that I didn't tell my body to take...weird right? The best way to describe it is that sometimes you take a breath of air...this breath takes itself. I can't seem to find any answers on this. Anyone else?
  9. I think I understand this but could someone please explain this in less "technical" terms. My brain is a little/lot foggy today:)
  10. Thank you Bigskyfam. I think I do forget sometimes. The "back to reality" is a bit unnerving sometimes.
  11. Yesterday started out to be such a great day. My husband & I have started a new church in our area & I was blessed to give my first children's sermon. IT WAS AWESOME! I loved it! At the end of the day my husband and I sat in bed talking about how great things had turned out and then BOOM...my PVCs started. I'm used to them so I blew them off. But when I layed down to go to bed they increased and I was having 10-15 of them a minute. Very dizzy & vertigo. When they didn't go away I finally went to the ER. The EKG was abnormal and they admitted me. My blood pressure was all weird. It was 103/39 at one point and then 93/45 and stayed like that but the drs never mentioned it. Anyway PVCs eventually went away and I was told to follow up with my cardio doc. It's frustrating because one minute I'm feeling pretty ok and then the next I get all of these weird symptoms. Today after all the heart activity I feel like I've been hit by a truck. Tired, weak & lonely. Wish there was someone to talk to who could say, "I totally understand, I get that too. It *****." My family is very supportive but I don't think they fully get it. Come to think of it I may not either....lol! I don't even know what category of dysautonomia I fit into. I've just been told not POTS. Sorry to barf all over everyone I just needed to vent.
  12. Yep, happens to me too. It's totally exhausting.
  13. Thank you for your replies. Sarah, the lab for my test said the normal range is 50-220. It's funny too because I already take 20mf of Prozac daily and have for years. They tried to double it but it didn't make a difference and my fatigue was worse. Then they tried to add Wellbutrin. Big mistake. I had major anxiety with that. So they tried adding a supplement called 5HTP which is supposed to naturally add serotonin to your body. At 100mg of the 5HTP on top of my Prozac I started having symptoms of serotonin syndrome so my dr discontinuted the 5HTP. Rachel, your son is lucky to have you:). My family is quite understanding most of the time about my illness but when I get so emotionally low and just want to cry all the time, it's not good. I also get quite irritable. Something has to give soon. Does all if this just go hand in hand with dysautonomia?
  14. My serotonin serum is 14 and won't budge. I feel awful. Anyone else deal with this?
  15. Hey everyone thanks for your responses! This forum is so nice. Anyway, I decided to go off my florinef and feel much better. Anxiety/depression has lessened. However at my stress test today something weird happened. My bp pulse is ALWAYS low. BUT, not today. I received an upsetting phone call prior to going in to the test. My bp was 134/80 before the test even started pulse 84. Doesn't sound really big I know but for me that's really high. I don't understand how I have a 48 hour holter done with my pulse never going over 103 and then today by the end of the test... My bp and pulse were extremely high for me. Good news is they only saw 3 PVCs during the test and I think I passed. Is it normal to have such extreme differences in bp/pulse with dysautonomia.
  16. I need some advise from Florinef users. I am on a very low dose. My cardiologist says it won't make me agitated, but I am horribly irritated ALL THE TIME. I don't know if it's because I have been sick for awhile now and it's just taking it's toll or if it could be medicine related. (I would rather have low BP than be crabby.) Also, does it make anyone else's PVCs worse? I used to have only 6 or 7 a day. Now it's too many to count. Any insight would be greatly appreciated. I've been on the medicine for a couple of months now. On a side note I am having a stress test on Tuesday. Would you take the Florinef that day? Won't they want to see how my heart functions without the Florinef?? Just curious. Thanks everyone!
  17. I was wondering what others do when your bp goes really low. Mine always runs low...about 101/60. But the past couple of mornings its been 89/52 and I feel like I am walking through mud. So very tired. I already struggle with fatigue but now it's worse. At what point do you get concerned? I have been having vertigo since Monday. I chalked that up to a medication change. I have Ehlers-Danlos Syndrome and my geneticist wanted me to start taking a muscle relaxer at night (Tizanidine 0.2 mg). Very low dose. But because of the muscle relaxer I can't take my normal meds at night to help me fall asleep (Clonaxepam 0.5mg). I wouldn't think that discontinuing one med and starting another would lower my bp so much. But, that is what has happened. It could be they are totally unrelated. Who knows? Very, very tired. Dizzy. Vertigo. Nausea. I do take Florinef to control my low bp but it makes me bloated, irritable and gives me headaches AND more fatigue. Haven't taken it in about 2 weeks because of the icky side effects. Anyone else out there have experience with this? What do you do when your bp goes low?
  18. So for the last several months my bp has been really low. Almost always below 100/60 and my resting pulse is usually about 53. I'm always exhausted and feel like I'm walking through concrete. So my cardiologist put me on florinef. It didn't do much except make me kinda crabby so I decided to stop taking it for a couple of days. Surprisingly my bp went up slightly OFF the medicine but my pulse still remains low. I have read a lot on this forum that our vitals can change all the time. Some days we will read close to normal and the next back to very abnormal. Just wondering what others experiences are because my cardiologist is starting to talk pacemaker and I'm only 44. One day feeling close to normal, the next walking thru mud...strange to me.
  19. My cardiologist called yesterday and said that my holter monitor test was ok but he was concerned about my pulse rate. My low was 39 and my high was 103. The one time I went to 103 was in the middle of teaching hip-hop so I was working hard. Doc says my heart rate should be well above that when exercising. He thinks its either due to a vagal problem (?) or sinus node disease. He said with the vagal problem my pulse would go up when laying down mine does not. He said he normally doesn't put pacemakers in 44 yr old women but he thinks that's where we are heading. That kinda scares me. Anyone else with similar problems? I would be willing if it would make my fatigue and shortness of breath go away.
  20. I am brand new to this board and am happy to have found a place where it seems like others will understand my struggles. Just last month I was diagnosed with Ehlers-Danlos Syndrome and some kind of Dysautonomia. (They don't know which kind yet, just know it's not POTS.) Anyway, I am currently on the medication merry-go-round. My bp is really low all the time and so is my heart rate. I am currently wearing a holter monitor so that docs can see if there are arrhythmias or whatever. My bp/pulse are so weird. I can have a reading of 112/65 (high for me) and a pulse of 47 while I am actively doing housework or something. Then, the minute I lay down to rest (because I'm constantly tired) my bp will go down to 94/52 and my pulse will go up to 65 or 70 and I can feel my heart beating out of my chest. It does that all night long while I sleep and drives me crazy. I don't know what to think. Everything is so opposite of the literature I read on what's supposed to be "normal". My numbers seem to be in the normal range...but I sure don't feel normal. I shouldn't be feeling my heart coming out of my chest at 70bpm. Sounds crazy I know. I am currently on Florinef to try and raise my bp. It makes me VERY CRABBY and I am not a fan so far. However, the one thing it does do is allow me to stand for longer periods of time without my bp bottoming out. Which is good since I own a dance studio. I teach little children tap, jazz & ballet. It has become very difficult to teach. My balance is shot (***** when teaching ballet) and my stamina is non-existent. I try to stay hydrated but I admittedly drink half-caff coffee a lot to try and get through my day. Any help, guidance, support would be much appreciated for a struggling newbie. This whole thing seems never ending and I am not sure how to get used to my new "normal". I am a shadow of the person I was just two years ago. I WANT MY OLD SELF BACK:( Not going down without a fight!!
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