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Always hoping

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Everything posted by Always hoping

  1. I had never gotten a flu shot before my POTS. I have for the last several years with no issues. Sore arm for a couple of days but that's all.
  2. @Weary I do remember my endo saying it was a combination of blood work results that to,d him I wasn't producing aldosterone. It probably included the renin. They didn't specifically diagnose me with hypoaldosteronism though. I have read that low aldosterone isn't that uncommon in people with POTS.
  3. Several years ago I had the blood volume test completed. Thankfully I was only slightly below normal so I wasn't treated. It was a nuclear medicine test where you lie still for a long time. Basically they insert the isotop (I think that is what the "nuclear stuff" was called) and then take vials of blood out at scheduled intervals over time (may have been an hour). I seem to remember the name Daxor and that the testing machine isn't readily available at all hospitals. I have had an issue with aldosterone also. They determined my issue through blood work. Flourdicortisone helped my symptoms a lot, which was most likely since it is an aldosterone replacement drug. Increasing the sodium my kidneys retained helped build the blood volume and increase my BP, so I guess this would say that aldosterone and blood volume are connected in a manner. Hope this info helps. Be well!
  4. Hello Alystew. My symptoms wax and wane and I am fortunate enough to live a mostly "normal" life. Some people are able to determine ways to manage their symptoms and they find relief. Just know that it isn't always a progressive disorder where things get worse instead of better. Some teens have been known to "outgrow" it. I know it isn't easy but try to be positive about things getting better instead of worse. When I was first diagnosed I wore a Fitbit. It actually gave me helpful information to determine what activities set my symptoms off. For example, I found that showering in the morning kicked my heart rate into the 170s and set my symptoms off for the rest of the day. I now shower at night before bed and can manage that part. Once I had some information though and realized that I was then becoming anxious constantly monitoring the numbers, I took it off. The added anxiety is only going to make it worse. For the most part for me, the more information I got, the calmer I got. The people and information on this forum are amazing. While many things may not apply to your situation, some may and can help you find answers. I believe if you keep monitoring, investigating and advocating for yourself you will find some answers and the right doctors to help you. Be well.
  5. I had a loop recorder implanted about 5 months ago. I agree with Pistol, so far it has been very easy and benefical. I had a 24 hour and 30 day monitor where of course nothing occurred while I was wearing them. After an episode of most likely SVTs and other craziness we decided to go with the implant. Thankfully I haven't had another SVT episode since the implant but it has been a great learning tool for me and my doctor. Mostly palpitations, PVCS and PACS. Good luck.
  6. I'm not sure if the aldosterone helps with thirst or not. The IV iron infusions were due to very low ferritin numbers. Normalizing my iron helped a lot with the fatigue and shortness of breath. An endocronogist can do blood work that will check both of these numbers for you. If you haven't seen one it could be worth a visit. Be well!
  7. @yogini Absolutely same for me. I do normally take my BP standing since this is when I'm feeling looping and check to see if that's the problem. Since I've noticed the beating in my ears at night, I've been doing some tracking lately in different positions for an upcoming EP appointment. My recent "highs" have been in the 160/high 90s standing when they hit the 180s/110 range laying I stop checking - it freaks me out! Lol. I am starting to see the over 30 increase in hr again from sitting to standing which the Florinef had under control so I do agree that the Florinef is working differently for me now.
  8. @Pistol Good point about the stomach problem maybe causing the high BP. I always think of it as the BP causing the stomach pain since I feel the high BP first. I had my gallbladder out about 20 years ago, but possible ulcer which is why we scheduled the scope. The pain is right in the middle between my navel and rib cage. Pretty sure it's something with the stomach. I don't believe that I ever had a BP over 120/80 until last January when it suddenly went to 190/100. Now it seems to come and go. It needs to just go! Lol. Hope all is well with you! @yogini I've thought about the fact that maybe my body is beginning to react differently to the Florinef. When I first started with it about 3 years ago, my BP was normally in the 80/50 range so the BP increase was welcome. Now I wake up in the 90/70 range and normally stay in the 110/80 range. It just seems strange that when these episodes hit it's late in the evening and I take the Florinef in the morning. After the January episode I cut my dose in half but that brought on different issues within 4 days. My body doesn't produce aldosterone so the Florinef replaces it. I'm guessing that even with the high BP that I will need to continue with it and then take a different med to counteract the BP increase. Ugh. Hate the wicked cycle. Thanks!
  9. How true. Been a little cranky all day about that thought - I just got how to live with the low BP under control. Dang it!
  10. Hi MomtoGiuliana.. Thanks for replying. I've had Gerd forever and take a Prilosec daily. I've never had the pain before though. I'm not presently taking D either. Thankfully I am scheduled for a routine endoscopy on Tuesday. The pain just seems directly linked to the times that my blood pressure suddenly increases. The increase in BP is pretty new to me so maybe it is just becoming my new norm. 😕 Maybe I am in a flare. I really don't know since it seems that my symptoms and vitals are changing and what I use to consider a flare isn't what is happening now. When you mentioned it, I did do some BP readings and went from 124/79 hr 79 laying to 110/92 hr 134 standing. I was happy the BP was down from earlier today and then notice the HR increase. Maybe a flare it is! Lol This POTS craziness is maddening. Hope your flare ends soon!
  11. My blood work showed that I had minimal to no aldosterone in me before I started Florinef. As this replaces the aldosterone, it helped me immensely. Aldosterone is key to fluid retention. "Aldosterone is a steroid hormone. Its main role is to regulate salt and water in the body, thus having an effect on blood pressure." Maybe your levels were too low also so this is why you are seeing an improvement with this med. From what I've read low aldosterone is not uncommon in POTS patients. I also had the test done for hypovolemia and I was only 1 point under the normal range so it wasn't as bad as my doctor had expected. This test was done prior to taking Florinef so I have no idea what effect taking this medication has had on those levels.
  12. Hoping someone here has some insight - none of the doctors do. I have had low blood pressure for years (normal for me now is 90-100/70-80 on florinef .05mg daily). About 6 months ago I had an episode of high blood pressure (190/100) one night. It went down on it's own after a few hours. Since then I seem to occasionally get episodes of high blood pressure at night (170-180/90-100). While I have put them off as some unknown adrenaline surge and have been just working through them until it lowers on its own, I have now started getting some pretty severe stomach pain while these high blood pressure episodes are happening. Not just an ache, but actual pain. The pain goes away when the blood pressure goes back down. My stomach will then ache for the next day or 2. I'd say that in the last 6 months I've had about 10-12 high blood pressure episodes, about 4 of them have been with the stomach pain and all of them are at night between 11pm and 2am). Any ideas? PCP has no idea and my EP just wants me to take the florinef and a blood pressure med. Thanks!
  13. So sorry you have been dealing with all of this. I have no answers or input but I hope everything settles down for you and you begin to feel better! Be well.
  14. I agree with @yogini - enjoy everyday now and use them to strengthen. I would say very slowly though so you don't set anything off in your system (especially since your not sure why there's improvement). Just getting moving more now is strengthening. Keep adding things, exercise or chores. I remember those forgotten muscles you are speaking of! Lol When I started to get back into my "normal" routines as I gradually felt better, each night I would appreciate the aches of my muscles. It's a whole different feeling of pain when it's a healthy muscle usage pain. When the muscle aches started to subside, I'd add more. I will say that my adding more, was actually more chores or activities versus legitimate exercise. I had so much to do since my house had gone to h*** over the 4 years! Lol Getting my iron and aldosterone corrected were key for me and I hope will hold for the long term. But I was lucky and found specific things that I could "fix" to feel improvements. I know not everyone is that lucky. I hope you continue to feel good and improve with each day!
  15. The flourdicortisone is a prescription. My BP would get too low when standing so this drug works to have the kidneys retain salt so it increases my blood pressure. For me it has made a great improvement. Everyone is different though with POTS - with symptoms and with what helps them. You'll figure out what helps you. I think the quick diagnosis will just get you on the road to managing your symptoms quicker than those that had to wait.
  16. Your "other" symptoms are the same as mine. I have also been told that my POTS came from a viral infection (mono) when I was 43 years old. Unfortunately I wasn't diagnosed for 4 years, so I did get much worse before I started to get better. I was actually getting slightly better by the time I figured it out. Knowing that some people "outgrow" POTS, I asked a doctor what he thought about my chances. His reply was that while the chances of a complete recovery was not the norm because of my age, but the fact that my body had begun on its own to "reset" itself was a good sign. Since then I have corrected a severe lack of ferritin with iron infusions, take a small dose of flourdicortisone to replace aldosterone that my body doesn't produce and have modified my diet and other daily activities to manage my symptoms. I am lucky that I can function almost at a "normal" level on most days. It's a rocky road, but stay positive that you will get through it and things will get better. Be well.
  17. @Bluebonnet08 Originally after my infusions my ferritin would go up to around 67 and the go back down into the 20s before the next one 3 months later. This last time (about 2 years of getting them every 3 months), I got bloodwork done the day before I got one at 4 months and I was at 139! A little nervous now that maybe I shouldn't have gotten this last one. I don't want to go too high! Lol. My gynecologist is the one that recommended the infusions. She said that she used them for her pregnant patients that were running low. She felt that they had enough to deal without adding the bathroom issues from the supplements. The infusions really helped my symptoms a lot. I'm hoping that maybe my body has "reset" and that I eventually won't need them.
  18. I was anemic also and none of the supplements helped increase my numbers. My gyno told me about the infusions which have been great. When I first started with the infusion once a week for 4 weeks, I did feel really bad at week 3. The infusion nurse said that this was normal that it got worse before getting better. By week 4 and every infusion since then, I've been absolutely fine with no problems. Occasionally I am slightly tired later that day but really nothing. @KiminOrlando - great thing to point out. Too high is just as bad or even worse than too low. I know someone that has to go every month to have iron removed from his body. I didn't realize that you could have high ferritin and still be anemic. Crazy how the body works. @Pistol I remember the doctor wondering if my daily Prilosec was stopping my absorption but nothing was ever clarified about why food and supplements weren't working for me.
  19. From the things I have read, "hidden anemia" is not uncommon in POTS. My CBCs had always seemed fine but when they actually did the Ferritin test I was at a 4. While fixing the issue didn't "cure" my symptoms it made an enormous difference in my fatigue and lightheadedness (is that a word? lol). I went for Iron infusions once a week for 4 weeks and then an infusion every 3 months. They aren't sure of why I couldn't maintain my levels but the infusion every 3 months kept bringing me up to a good level. I've been doing the infusion for about 2 years. I pushed my last infusion off until 4 months and had blood work the day before. My levels were great! I'm hoping that my body is now either producing, absorbing or holding it's iron and hopefully I will be able to prolong the infusions even more. Yes - it is an easy test that isn't paid enough attention to. I have a great hematologist who was actually unaware of this "hidden anemia". He now has another POTS patient that he is helping. Good luck!
  20. Have the doctor check your iron and ferritin specifically. My cbc looked only slightly off, but my iron and ferritin were drastically low. Something called "hidden anemia". Good luck!
  21. I miss loving my showers! I couldn't understand why I felt so bad after I took one until the POTS diagnosis. Now I take showers at night before bed which seems to help and depending on the day, sometimes take them sitting in the tub.
  22. Bluebonnet08 - Same here. Iron infusions have been a huge help for me.
  23. I'm on fludrocortisone due to not producing aldosterone also and I don't actually salt load. I may increase my salty foods at times when I am feeling low or in hot weather which sometimes helps. I notice much more of a difference with fluids than salt. I can always tell if I haven't drank enough and I often feel more of a positive difference with Gatorade than water. Good luck with the fludrocortisone. While I can only take a small dose of .05mg daily, it has helped manage many of my symptoms greatly.
  24. Thanks Katyroq. Some days it's harder than others to hold onto that thought, but I try as much as I can. We really do learn to appreciate the "good" things so much more when dealing with this crazy thing! Be well.
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