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PupLoverKV's Achievements


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  1. Have these been witnessed at all? My syncope was initially mis-diagnosed as seizures by a neuro after my neighbor described one which happened in front of her. The consensus is now that they are "syncope". My understanding is that most people with POTS stop at pre-syncope and don't actually pass out. Has the possibility been ruled out that you are just in the minority which does?
  2. Honestly, I thought I had both at the beginning. Not sure if something changed or was maybe misinterpreted, but now I have 2nd degree AV block at times. Large percentage of the time is sinus tachycardia when it's not something really crazy. (RHR ~100, often 120+). Good luck!
  3. Have they cultured the sample? I know Cipro is a "usual" choice but sometimes it does not always work. Add in the yeast component and she could end up in a horrible cycle. If they haven't cultured the sample ask them to. I've had some weird stuff come up myself. I used to joke that I'm immunocompromised and now I'm beginning to think there is something to it despite being negative to everything from an immune perspective. I've gotten UTIs from weird bacterias that only appear in hospitals well before I was ending up there. Culturing the sample should help. As should AVC, Probiotics (don't chance them with kombucha if she has POTS), and maybe some sort of anti fungal. I've gotten terrible bacteria and yeast infections where I've needed a double dose of diflucan in addition to the antibiotics. It's not standard but may help. Good luck to your daughter!
  4. This sounds EXACTLY like my story. I was put on BC at 13 because I kept passing out during my period (very heavy, very painful, severe anemia despite supplements). If EDS testing proves type IV I personally will have decided that I'm not going to have children (too many issues, sort of a "straw that broke the camel's back" sort of thing). I wonder if they would let me go back on deep at that time if I stop expressing the urge to have kids in the future.
  5. Interesting, I loved Depo Provera but was on it so long that they will not prescribe it for me anymore. Apparently being on it too long can mess with your fertility. I have noticed in the past that a lot of birth control methods just didn't agree with me. I didn't have POTS yet but have always been very sensitive to changes in hormones with very extreme reactions happening very quickly. Implanon, Nuvaring and various pills have always caused me to have alarming side effects until I was put on Yasmin. It's so bad that one time a substitute doctor filling in for mine wrote Yaz instead of Yasmin. After a few weeks on it my hair started falling out - very visible patches of it. I do think birth control can have very dramatic effects on your health and well-being. I, personally, am not 100% sure it's related to the dysautonomia though since I had so many problems 10-15 years before I ever had POTS. I'm so happy you were able to figure the BC out. Depo Provera is awesome!
  6. Ok, thank you. My doctor thought it may be related to the weight loss and physical stress of being sick... Now that I have gained back 30% of the weight I was worried it had not returned. I can ask her if she thinks I should get a referral. Got hospitalized and just found out I have a heart condition too that they do not believe is related to POTS (but may be causing my frequent syncope). Beginning to feel all "doctored-out" right now. Luckily my hospital has an endless supple of rainbow sherbet, teddy grahams, and a comfortable bed. Thanks again and happy holidays!
  7. I'm getting a little concerned. I haven't gotten my period in over 3 months. It's been so long that I literally cannot remember when it was. I have taken multiple pregnancy tests - all negative. My POTS still feels like crap but seems infinitely better since it was in July(?), and I think I had my period then... So I'm not sure what's up. I'm back to a low-normal weight (5'7", 120 lbs), eating healthy, trying to stay hydrated (even if it means peeing 3.5L a day), and taking my BC religiously. I cursed it when it did come but do want children someday so am worried that it is still gone/concerned it may impact fertility. Is this normal? Has this happened to anyone else? I have been trying to search and can't find anything specifically relevant since I am healthy weight, my condition seems to be improving (aside from a cardiac component that is worsening), and I'm not under any extreme stress.
  8. I see a doctor with a lot of POTS patients and her nurse does a lot of IVs for them. She tells me that the POTS gals she sees commonly have horrible veins. I know that when I was younger they used to rave about my veins. Since getting POTS they are so bad we are talking about putting a port in me. I definitely think they have either degraded over time or the POTS has directly and specifically affected them. I'm pretty opposed to a port right now because I don't want one in my chest (hoping to apply for new jobs sometime soon) but if they could put it in my arm I would be down 100%. I am very prone to infection and everything I get seems to be resistant to antibiotics... So the idea of a PICC line terrifies me.
  9. My heart rate doesn't have any variation between day/evening which is consistent. Mine seems to have responses spreading across several days. On the low-end my normal variation was in the neighborhood of 17-20bpm higher 1 minute after standing. Lately it has been 25-35 bpm higher 1 minute after standing despite the fact we keep adding medications. Like your daughter, I have headache daily - I refer to it in the singular form because it has not gone away since I got sick - it ebbs and flows, somedays being a hard pounding where I can barely understand what is going on around me with other days being a dull ache. Does your daughters ever actually go away? I was told that it is probably caused by the POTS and the headaches seem to be increasing as the variability increases. Is her variability more than yours?
  10. Hi all, Random vent and asking for advice: I've been on disability for a few months. I found out that work has been monitoring my FB use and is not happy with it - so I became a bit of an anti-social recluse. I'm not sure what they think I am supposed to do all day, but that's another issue. It came up in discussion with one of my doctors who suggested making a new "covert" FB that doesn't have anyone on it that they would know. Ok, great solution! Now I can be social and involved. The downside is that now no groups will add me because it has 0 friends and basically no FB history. Do you know how I can go about adding new friends to my FB to at least make it clear that I am an actual legitimate person? I really don't want to go into the drama with my friends/add them and all of my family has been tagged all over my personal facebook - don't want to add them in case they come up as "people you may know" since some of the people at work are friends with my brother/sister/cousin etc. So now I'm trying not to be anti-social and it still isn't working.
  11. I don't think it's the Yasmin. I've been on it for 5 years now. The only time I had an issue was when my old doctor accidentally prescribed Yaz instead - my hair started thinning in just one month. Before going on the Yasmin we tried every BC under the sun on me - most had very negative side effects. I used to have Depo Provera which I was very happy with - but I was on it for 6 years straight and no one will prescribe it to me any more. I can't be without BC because I lose too much blood otherwise (gross, I know, sorry)... will ask about BC but realistically, changing it would only make things much worse.
  12. I was told to wear waist high stockings. I've been unable to find closed-toe ones which fit me since I've lost weight (I'm pretty tall) - needed to start wearing the leggings or open toe ones just so the crotch wouldn't be halfway down my thighs when the legs are the proper size. Aside from no longer having the crotch low slung I have not noticed any difference between the closed and open toe ones.
  13. Before they did my TTT I was having problems with vertigo as well as other symptoms because of what we now know is POTS. I had heard horrible things about the TTT but knew I needed to do it, thinking "I need to do everything I can to figure out what is going on". I'm not going to lie, the TTT was brutal for me. It really messed me up for the rest of the day - I was unable to move from a chair fort I made for myself in the Mayo Clinic waiting room for almost 8 hours (my gap between the test and my neuro appointment). It was so bad they sent the gal who performed it out to check on me. I also don't regret the test one bit. Being uncomfortable for 8 hours was 100% worth knowing what is going on and having a proper diagnosis - something I was lacking before. Just please make sure you are with your daughters the day of the test. It sounds like you plan to be... but I really wish I wouldn't have gone alone. My mom wanted to go and I told her "no", unfortunately she listened. It would have been great to have her there in hindsight.
  14. Thank you! I will look into Corlanor and ask my doctor if it's something we can consider - mine may not be high enough though since it's still quite a bit lower than yours. That's a bummer that your BP is that variable as well. I guess perhaps this is something I will need to get used to. I haven't noticed a change in my HR after the midodrine wears off but can do a few more measurements to check it over the next couple of days. Good thought on whether it might be interacting. I think the plan was that it shouldn't affect my other meds, but it may be worth a check. Between the Concerta, Midodrine, Gapapentin, Zofran and Protonix (also on Yasmin for bc) I guess I hadn't really bumped them up against each other since I noticed the change with the change in Midodrine amounts and assumed it must be that. Just reading about your numbers makes me feel for you. I can't even imagine how badly you must be feeling. I really hope you can find your way to good health soon. Thanks again for taking the time to respond, it means a lot to me.
  15. Howdy, I was recently diagnosed in September with POTS and wanted to chat here before I see my doctor Thursday. My doctor is great, she suffers from OH and is very knowledgeable with a lot of empathy, but I wanted to see if there is anything else you guys can thinking of which I should be asking her about medically. Or would have insights into some of the questions below (obviously, you aren't doctors... but if you have any experience yourselves). I have taken Concerta for ~10 years to treat ADHD. My understanding is that this drug can help POTS for some people. After diagnosis via tilt table test on 9/2 we started me on Midodrine 5mg 3x daily, continuing the Concerta. Two weeks later we increased the Midodrine to 7.5mg 3x daily, still continuing the Concerta. Since 9/18 (when we upped the Midodrine): 1. BP slowly rose for 1 1/2 weeks (from about 90/60 to 100/70 - averages), HR variation stayed the same as when I was first diagnosed 2. BP quickly spiked quickly over the course of 3 days (9/30 - 10/2) hovering between 120-137/65-75, HR variation dramatically increased by about 80% 3. BP then started dropping again, it hovered around 110/75 for a week and has been in the neighborhood of 100/70 the past few days - I assume still falling. My HR variability is better than it was during those 3 days of craziness, but still about 65% larger swings than when I was diagnosed and a ~15bpm higher resting heart rate. The past 3 days there has been this weird pain under my left breast implant - so technically chest pain I guess but not alarming enough that it's motivated me to go to the ER. I saw a cardiologist and he does not see anything "structurally" wrong with the heart - just would like me to do a halter monitor for 48 hours to confirm. My headaches have been consistent and daily through the whole thing and the frequency of my syncope has not increased despite the BP/HR variability. Now for my questions (feel free to skip here if TL;DR): Has midodrine made anyone's POTS worse? I can't find a single example when searching the 'net. So not sure if "the POTS" is getting worse or if the medicine is making it.Has anyone's body gotten used to the midodrine? I thought part of it was that it is supposed to help BP. It helped, overshot, and seems to be dropping now despite the medicine and following all of my instructions (high salt, small meals, compression stockings).Has anyone had a problem with very high pulse that they were able to fix without a beta blocker? The cardiologist says my BP is way too low for that to even be an option.I literally have no clue when I should go to the ER if this does not get better. At it's worst my heart rate gets up to nearly 140bpm right now. If the chest pain was worse OR more in the center I would go - I just don't know when to go otherwise. My fear is that the ER won't know what to do with me. I really can't afford an ER copay with my current disability pay just to be told its's "anxiety" or a "migraine" like what happened before my diagnosis. I just don't know how to know when it's a "problem" that requires a visit.Thank you so much for your help. I'm a little lost still since this all is so new to me. I've never been sick in a way that isn't getting better until this POTS.
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