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  2. I have prinz-metal-angina. I do not actually feel like my heart is "spasming" - I just get chest pain. And I was never told that my EKG changed during an episode of angina ( monitored in ED, telemetry units, implanted loop recorder etc ). I was diagnosed after a heart cath.
  3. Today
  4. Peter Charlton

    Heart issues, Cardiologist not helping

    Firstly, I am not a cardiologist, just a medically retired mechanic. That last line, where it has the bigger gap between the QRS waves, that is a PAC. I attach a picture of one of my PACs. My second picture will be of a PVC, rather than a gap, they have this huge spike. Picture that looks like a child's scribbling, is my Sustained Ventricular Tachycardia, when its like this they like to see you in ER. PACs and PVCs are nearly always benign and they say nearly every body gets them. Last picture is how my heart looks like when I suspect I am getting Prinz metal angina, or Coronary artery spasm, feels like really bad heartburn, you will notice that the little bump after the normal spike of the QRS is actually huge, this is called the "T" wave and is a sign of LAD Occlusion which would in effect block coronary arteries the same as Prinz metal angina, so I don't think I am wrong in guessing one would see a similar ECG. Please note if you ask a question of me, even though I select the notification box, I never get notifications, apologies if I don't reply.
  5. Funnily enough I've just come back from A+E, I've had a severe headache for the last three weeks that suddenly got much worse, turns out my neck and shoulder muscles are all in spasm. The Doctor treating me had one POT's patient who had had IV saline and benefitted from it. So it is available here. I'll go armed with this info to my GP. It seems such a simple and risk free procedure, at least to try it at first, with out a port etc. Here's hoping!
  6. I would advise to try and find a form of birth control that works for you. I cannot live without it. I wasextremely ill, and was off of it for a whole 6 months and just kept declining rapidly. I could barely move my any limb and was on a walker, and I’m an otherwise healthy fit 27 year old. I just recently got back on with a few other things and I feel like a whole new person. I also have horrible cystic acne when I’m off it, and when I’m on bc I have perfect flawless skin. Maybe one tiny pimple a year! I will say i only tolerate Yaz. It’s monophasic I think and I actually lost weight and have no side effects from it. Its the only thing that helps me retain fluid and increases my blood volume. Without birth control, no amount of salt would help and IV saline worked only for a few hours. It might be the specific type you are on, but my POTS doctor mentioned that hormones such as estrogen can trigger autonomic flares when they naturally fluctuate. I still have not so great weeks the week before my white pills (which is when I’m supposed to have my period, but I skip them) but the first 2 1/2 weeks are amazing. My pots is greatly affected by my cycle. I have been on Yaz for over 10 years with no problems
  7. My doctors did not give me IV therapy when I was sick. I did have an IV a couple of times in the hospital and felt much better. It does seem like a very good option, especially for people who don't respond to medicine.
  8. MomtoGiuliana

    Improvement of POTS from IV fluid therapy

    IV fluids has become standard therapy for POTS patients in my community. Considering I am in a rural area this is kind of surprising. When I became ill again with severe POTS this year, I was offered IV saline therapy almost immediately. I live 5 min from the hospital/infusion center which made it very easy too. My husband would drop me off in the AM, go to work, and pick me up at lunch time. Typically I was getting 2 bags over 4 hours 3 times a week. This very aggressive approach did seem to help me a lot. After each session, I was far more stable/felt better. At least able to sit up comfortably. After a few weeks I was able to walk into the infusion center rather than in wheelchair. In 6-8 weeks I felt tremendously better and was able to go back to work. There were several other POTS patients also getting this therapy at the infusion center. It really was like a dream come true after having had severe POTS in 2002 and most doctors did not understand what was wrong, or how to treat my condition. The nurses at the infusion center seem to understand POTS and respect how severely affected patients are. I so wish this were available to every POTS patient who could benefit from it. That said I do know of POTS patients who have received intensive IV saline therapy and not seen much improvement.
  9. RecipeForDisaster

    Improvement of POTS from IV fluid therapy

    Repeat explanation of why this would help and a request just to let me see if it helped. All of my doctors were unwilling to prescribe it until my kind hematologist said "okay". That was after I suffered through a week of mostly being on the floor, blacking out and not being able to eat or walk. He knew there was nothing else that could be done for me and he has a heart. One cardiologist said the same, "if you can drink you don't need IV fluids". Now that he has heard of how helpful the fluids were, he's willing to take over prescribing. Aggravating!! It took me months of hard work to be able to try it.
  10. StayAtHomeMom

    Experiences quitting hormonal birth control?

    I had to see a dermatologist and ended up having to use a generic form of Accutane. It was ridiculous how bad my acne still was at almost 30. Best thing I ever did.
  11. KristaKupcake

    Experiences quitting hormonal birth control?

    I had the Mirena for 5.5 years but now I actually have the newer, smaller IUD. It has less hormones than the Mirena - it is called the Kyleena. I’m loving it so far! Aside from the obvious pain of getting it inserted, it has worked great and my body is used to it now. I have noticed I experience slightly more symptoms now with my cycle because there are fewer hormones. It isn’t enough to make me go back to the Mirena though. I just have a bit more acne, cramps and bloating now with the Kyleena compared to when I used the Mirena. You think being almost 33 that acne would be done. At least my flow is still controlled well - I think it is better controlled now with the Kyleena so that is a bonus! You defintly still ovulate with the IUD - I am prone to cysts so I feel when I am ovulating and/or having cysts rupture. That has been normal for me for years and they aren’t problematic cysts (ie. they go away on their own).
  12. StayAtHomeMom

    New to POTS and new mom

    I never breastfed my boys. I am curious, can't breastfeeding cause dehydration easily in mom?
  13. Derek1987

    Can spicy food trigger episodes/fainting?

    Ouch. Thanks for the reply. I'll add this to the list of things to tell my doctor.
  14. @Derek1987 - hot foods cause vasodilation, hence the sweating and flushing. This happens even in "normal" people. I would avoid spicy foods for now.
  15. Pistol

    New to POTS and new mom

    @Yhoun - ask the pharmacist before filling your prescription, they will know exactly about the breast feeding while on florinef.
  16. @potsiebarbie - to answer your questions: salt along with added fluids help the BP to stabilize. For drinking I was advised to drink 8 oz water every hour at least but most memebers drink more than that. I personally do not tolerate plain water, so I drink ginger ale. When I am in a flare I drink Gatorade and broth since they are rich with electrolytes. Salt tablets make me sick, so I just add salt in my diet with pretzels, pickles or olives, heavy table salt with everything. -- Compression stockings help prevent blood pooling and drop in BP when standing up ( which is what causes orthostatic intolerance ). But they have to be fitted to your body. If there is a medical supply store in your town I would go to them, they can measure you. If you order from amazon or other online sources you should measure your calf and thigh ( at the thickest part ) and compare on a sizing chart before you order. They are VERY effective!!!! - And to your last question: yes, I have experienced shortness-of-breath when I was at my worst. I still do if I am in a flare. --- Best wishes to you!!!!!
  17. Potsie1990

    p.o.t.s. newbie w/ questions about symptoms

    If you search through recent threads I have a post call Smoking Helps Pots? I will warn you, it’s long and unconventional but considering I was on a walker with severe POTS that left me immobile with terrifying symptoms and now I can live normally again within a year, it may be worth reading. I’ve tried most of the conventional treatments and all failed.
  18. potsiebarbie

    p.o.t.s. newbie w/ questions about symptoms

    Thanks for replying! Yes, I had a hard time explaining it to people/and docs, and I'm pretty sure everyone thought I was nuts. Lol I'm glad yours went away when your BP stabilized. That gives me hope! Did you do anything in particular to get your BP back on track?
  19. potsiebarbie

    p.o.t.s. newbie w/ questions about symptoms

    Thanks for the reply! My pediatrician wasn't too sure, but I feel the same way and don't want to risk anything harming my daughters. I'm breastfeeding a 7 month old and an almost 2 year old. I had my tubes removed so I'm having a hard time parting with the whole breastfeeding relationship since this baby is my last (I have a five year old too). It seems silly, but I'm actually really scared to stop and then nothing help, and I will have given up breastfeeding for nothing. It makes me feel better that you mentioned lots of people improve over time. I feel like I see a lot of extreme cases, and it gets a little scary.
  20. potsiebarbie

    p.o.t.s. newbie w/ questions about symptoms

    Oh and I thought it was funny you mentioned Walmart because when I first started going thru all this I felt so much worse in Walmart. I literally felt like none of it was real and like I could just run thru the store singing or whatever (lol) because it all just felt like dream. It hasn't gotten better but I feel like I've gotten a little more used to it. Same with the tachycardia actually. Did/do you ever experience shortness of breath?
  21. potsiebarbie

    p.o.t.s. newbie w/ questions about symptoms

    Thank you so much for your reply! What's the method to the madness with salt, fluids, electrolytes, and compression? Do you take salt tabs, and/or increase thru diet? How much water and/or electrolyte enhanced drinks do you drink? Last but not least what kind of compression? Sorry to bombard you with questions! Lol I know everyone is different, but I'm hoping by gathering enough info and other people's experience/methods I can kinda find my groove with all this.
  22. potsiebarbie

    New to POTS and new mom

    I really hope your appointment goes well. Please update! I am having a hard time finding doctors who know much about pots or have even heard of it. What things do you do to make yourself feel better? Right now I am trying to find the right combo of salt, fluids, and electrolytes. I also want to find more detailed info about compression garments. I have a couple pairs of compression socks, but that's it. Last but not least I found a compact affordable rowing machine on Amazon I'd love to get. I heard the rowing machine in particular is great for pots. As for day to day... I feel like I'm on autopilot. I feel like I'm slowly getting worse. I can take care of my kids, but I'm dying to just play with them and be carefree. I really took that for granted before the whole pots thing. Please let me know how your appointment goes, and good luck! Sending good thoughts your way!
  23. potsiebarbie

    New to POTS and new mom

    I know. ☹️ I haven't even picked it up, because I'm not ready to wean. It's really hard, because if I knew for sure all my "issues" would resolve with this then I'd stop breastfeeding in a heartbeat, but at the same time if it was all for nothing I'd be devastated. I had my tubes removed, so this is it for me, and the breastfeeding bond (or whatever- lol) that I have with my girls is so special to me. My littlest actually gets mostly formula- it's my toddler that I feel I would have a hard time weaning. Idk. It all sounds dumb, and it's hard to explain. I did ask the pediatrician and she wasn't certain and said she'd look into more, but I'm just not willing to take that risk with what little info is available. 🙁
  24. bellajulz

    Setbacks

    Sorry you’re having a bit of a rough time, as far as the fludrocortisone I personally did not benefit from this med. I would suggest talking to your doctor and see if something would be more beneficial for you without the edgy feeling. Best of luck!
  25. The 2nd time I was going into fainting but never fully went out, I had taken a cayenne pepper pill for the first time to reduce blood pressure. Now that I've been checking my blood pressure a lot, my pressure is never consistent. I'm not sure how long that's been going on. So tonight, I ate like 15 pepperoncini peppers. They aren't too hot. I love spicy food. About 20 minutes later, I felt it coming on as if I was about to faint. This is while I'm laying in bed. I got hot fast so I turned on my box fan and pointed it towards me and layed down. My face was flushed and hot to the touch. My heart was beating really hard. Although that could of been because I was freaking out. Fainting scares me because I feel like I'm fighting for my life. I layed flat for a few mins and tried to relax. Of course my wife was worried and trying to calm me down and seeing if I needed to go to the hospital. I said no let me just try and relax. I seem okay now. I was wondering if spicy food can trigger this?
  26. Derek1987

    Legs burning as if I'm exercising

    I don't think so. It's still sore though. Tomorrow I'll take a closer look.
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