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Everything posted by MommytoSJEA

  1. my heart rate shoots up and then stays there. Its doesnt slow down again until I sit down and rest for an extended period of time. It stinks and I hate it. No meds have ever been able to help it. ~Kelli
  2. I hear ya. We are big time irish here, and all day I kept walking past the whiskey bottle that I have put up and wanting to take a swig soooooooo bad, but I just cant do alcohol anymore. Screw the people on the campus. Find a good book and cuddle up. They are the ones who are going to flunk out because they are too worried about the next big party. You are the better person for knowing your limits. (((((((HUGS))))))))) Kelli
  3. My biggest preoblem with it was the nausea. For me it was terrible. I felt like I was going to vomit everytime I opened my mouth. I did get the goosebumps and the tingleing scalp, but thats just more of a hey this is odd feeling then a bad feeling. I think the med did help really, I just couldnt deal with the nausea, and the stupid doc refused to give me anything for it. So i stopped. Good luck with it. I know many people have done well on it. The thing I hate about trying all the meds is you never know how they are going to affect you. But you have to try because the next one could be YOUR miracle drug! ~Kelli
  4. I get them. My cardio said they are PVCs. Nasty feeling. I will notice first that im getting lightheaded. My heart beat feels like beep...beep.....beep.........beep..................beep......................... ........................................BEEP BEEP BEEP BEEP. It hurts almost. When they "kicker" beat hits it feels like im being slammed in the chest. The longest they have ever lasted is about 30 minutes. But its such a scary feeling. ~Kelli
  5. I have noticed that my periods are worse. Ive always been very very regular. I wouldnt say im irregular now, but I can be a week early or a week late, when I was every 28 days before. They used to only last 3-5 days and be pretty simple. No bad cramping, no PMS. Just an inconvience once a month. NOW.........the day before it starts, and for 1-2 days after, I feel like im in labor the cramps are so bad. Super heavy flow. Its terrible. And they last 7-8 days now. But its like it will be here for 6 days, get 1 day off, and then more for 1-2 days. More often then not, I get sick the days leading into it too. Like vomiting and such. It ***** being female Kelli
  6. yeah its pretty normal for POTS pts. 2 days ago I was feeling pretty good so I did some major cleaning, silly me. I carried tons of heavy stuff up into the attic. I got really lightheaded and had to sit down. I took my BP and it was 158/132. Woops. So I took a break. It just happens sometimes. ~Kelli
  7. I had SVT and was ablated 2xs. Then I was dx with IST and had the sinus node mod. done. Now dx with POTS. Im thinking the ablasions and the modifaication made things worse, b/c Ive just been getting sicker. oh well, nothing we can do about it now. I will say though that the first ablasion I had done, did help. I stopped going over 200 bpm and fainting from that. ~Kelli
  8. Thank you Captain Obvious! I hate the ER sometimes. Well at least the Er did not find something serious....thats a relief. No answers dont halp either.......but in this world, I think by now we are all pretty used to that. Hope they can figure it out! ~Kelli
  9. ((((((HUGS))))))) If we dont look things up, then how are we going to advocate for ourselves???? Dont give up. Find another dr, get another opinion. Even if you have to drive a bit, it might be worth talking to someone else. Kelli
  10. Our bodies all do wierd things all the time that we often have no explaination for. I know you said you take your pulse to see if your tachy during the dizzy episodes, but have you even taken your blood pressure when this is happening?? If you dont have a BP machine at home, I would suggest you get one. You can get fairly inexpensive ones right from your local pharmacy. It has been a godsend having one. I think almost all of us here have them. I can tell you that I have something similar happen to me. It tends to happen more often when I am sitting on my couch reading or watching tv. All of a sudden I feel like Im really warm and like a dizzy flush will come over me. I know it sounds almost like Im describing a "hot flash" but Im 28, so I dont think thats what it is. But thats the best way to describe it. I feel like I cant breathe as well either. Like I cant take a deep breathe if I wanted to. Its not anxiety, becasue Im perfectly calm when its happening. My hubby and I think it might have something to do with the way my body is positioned when Im sitting. Not slumped over or anything, but not ramrod perfect posture either. Just relaxed. He said maybe something to do with interrupting blood flow and pressure on my heart. I know that my tachy isnt necessarily worse then it normally is (I have innapropriate sinus tach so my resting HR is always over 100). So no clue why that happens. Doc isnt sure either. He just told me to change positions. Anyways........sorry for the novel there. Just know that you are sooooooooo not alone with all the confusing symptoms. POTS affects all of us in very many different ways. ((((((HUGS))))))) At least you have a DX and thats a start to helping you feel better. If your not comfortable with what your dr is telling you, get a new one. Unfortunatly, with POTS, we have to doctor shop to find someone who is knowledgeable about dysautonomia and willing to listen. ~Kelli
  11. I wore that patch for about 6 months. I really did like the simplicity of it. The only side effects I had were not system related. I got major skin irritation from it. The doc said it almost looked like an allergic reaction no matter where I wore it. There a few different sites you can put it. Hip/butt area, pelvic region (i believe), and upper arm (like where you would get a shot). My skin would get red and inflamed, and sometimes I would have red lines coming fown from where the area. She said no good and made me switch. But my skin is sooo darn sensitive! Hopefully it will work for you. Kelli
  12. those are really nice! I jave jad one for a little over a year. Its a charm bracelet, and the heart charm on it had all my med info and the medical alert symbol on the other side. The prices are not bad on that site either. Much cheaper then the regular sites. Kelli
  13. Yeah I know. That would be great! In the words of Dr. House (great TV show!!) IT'S NEVER LUPUS!!!!! Which is what all my friends and family keep jokingly and lovingly telling me ~Kelli
  14. I know...goofy us! But its nice to know we are not crazy and that we really are sick. So I had a slew of labs done and I got them back a few days ago. Most of it is alright. ONly the autoimmune stuff came up with abnormal results. ANACHOICE SCREEN: Positive ANTI-NUCLEAR AB TITER: very positive at 1:1280 ANA PATTERN: Speckled VITAMIN D: 4 (yeah very deficient...lol) Sooooo......of course the first thing Dr latches on is lupus. She wants me to go see a rhummy for further testing to confirm (or maybe to figure out what else it could be). I did read that it could be a few things with the speckled pattern. I do have many of the sysmptoms of lupus, and not symptoms of the other thins it could be like Sjogrens. I was kinda wondering about Rumatoid Arthritis, but my RA was negative So we will see. Time will tell. Just one more thing to add to the list. But I dont mind because noe we are getting somewhere ya know??? Kelli
  15. ((((((HUGS))))))) and prayers Kelli
  16. It feels good to know that there are still nice people out there in the world doesnt it?? Kelli
  17. I do find that I feel so much WORSE on my meds then not having any at all. Yeah Im a mess if I dont take them, but Im a train wreck on the darn things. My docs just say "we need to find the right combo of meds that works for you" We've been trying to find the right combo for 5 yrs! I am highly sensitive to all the heart meds and BP meds that they have tried me on though. Hoping to some day soon right the right ones Kelli
  18. I would call your OB just to be safe. Good luck, its almost time to meet your little one!!!! ~Kelli
  19. I took it before pots dx. Did not have any side effects, which for me is very surprising. Kelli
  20. I have horrible chest pain everyday. I have had all the usual battery of tests to check my heart, and they can find nothing wrong excpet it beats waaaayyy to fast. Im sorry you are going through this. It hurts and its really scary too. HUGS Kelli
  21. It makes me crazy tired. I can only take my dose at night which is not really helping. If I take it in the AM I am a mess. And if I take a nap, I get the same run over by a truck feeling. So i take it about 20-30 min before I want to go to bed. Kelli
  22. yes! I am physically a mess after sex. My HR is out of control, i feel like im going to vomit, and the room is spinning. I finally just the toher day got my hubby to understand my reasoning for saying NO so often is not lack of desire for HIM, its no desire for feeling like that. At orgasm I get intense pain in my head, and I feel like Im going to pass out. The pain is horrible. I have actually passed out a few times from it. Its terrible. When I went to the Nuero, I talked to her about it and she said its actually common in dysautonomia. Dont have any advice for you, just know your not alone. ~Kelli
  23. I cant believe he said that to you...well...yeah I can, becasue my cardio has said the same thing. While IST alone is not deadly, it sure as heck FEELS like Im dying on a daily basis! HUGS to you. Glad you found a doc nearby that specializes in POTS. I would not go off your bladder meds until you see the other doctor. WHile IST is not the POTS dx that you were looking for........it is a start in the right direction. My IST is worse then my POTS I think anyways, and the massive fatigue I have the DR says is from the heart racing all the time. It makes the body think its running marathons. Good Luck! ~Kelli btw....when I was crying about quality of life, my cardio says............."Your life will be completly miserable, but your not going to die" GEE THANKS!
  24. I have had quite a few instances where im laying down, but yet still feel like im going to pass out. I get the room spinning, wow im really drunk feeling. NOT FUN! Now I have never thought to take my BP while this was happening. Maybe I should one of these times. Sometimes its so bad, it wakes me up. Not that I understand that...big surprise. But I wake up I think because Im feeling so poorly. And I cant get up, b/c Im so dizzy, yet I seem to think if I get up, Ill feel better. I have even tried to do the put your foot on the floor to "stop the spinning". (drunk remedy.........not sure if anyone else has even done that after drinking ;o) Yeah, it doesnt help. Sorry you went through that, I have no suggestions. Just HUGS ~Kelli
  25. First off (((((HUGS))))) Yes, I get that pain. I have been to the ER for it before. It hurts so bad. I feel like im dying. It feels like someone has my heart in a vice grip while at the same time stabbing me with a screw driver. My heart beating fast and hard just makes is worse. It hurts for my heart to beat, thats what it feels like. I've been in the hosp during one of these episodes, and had ekgs, and echos while its going on, and they said technically nothing was wrong, other then the tachy. ANd it could just be that since its beating so hard and fast it causes pain. They have given me nitro before, but that was before POTS dx. Again, hugs, and know your not alone. If you get really worried, call the doc. DOnt worry about them giving you "the look". If your in pain, you deserve someone to try to help you with it. ~Kelli
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