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Bluebonnet08

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Everything posted by Bluebonnet08

  1. Also wanted to add... I went through a period of a little over a year where I didn't have any "attacks" as I call them. At that point I was on a good schedule with my IVs and my ferritin (iron stores) were good. They were horrific in the 3rd trimester of my pregnancy but went away after I delivered the baby (knock on wood)... I am hoping things will continue to stabilize for a bit for me. I didn't have a problem during labor either.
  2. My surges have gone through phases. Things that have made them 1000x worse: birth control pills, 3rd trimester of pregnancy Other things that made them worse: dehydration (IVs help ALOT), low ferritin(getting iron up helped) While they are bad going low carb/low sugar helps. The heat makes everything worse.
  3. I would just say, don't give up! I've had this condition for 13 years and it was a long time before I got a proper diagnosis. At first I was diagnosed with panic attacks, even though I literally collapsed on the floor of an emergency room! What many of us need are problem solvers- someone who can put the pieces of everything together. From my personal experience, I've found that many doctors are able or willing to do this, so it makes for a very frustrating time... I don't know if you are in the US, but an autonomic center is a good place to start. There are many types of dyautonomia, not just POTS. They will also look for things that frequently go with autonomic conditions like CFS, small fiber neuropathy, and many autoimmune conditions. I had a good experience at Sentara in Norfolk, Va and I plan to go to Vanderbilt this fall. Secondly, have you tried a functional medicine doctor? I've had some help working with one. Lastly, there is a site called "crowdmed" where people can submit "medical mysteries" and people work to try to solve your case. I tried it last year. It wasn't very helpful for me, but I spoke to someone that said it helped them. It could be worth looking into. Good luck.. sometimes I feel like it's a long journey to try to sort out a complicated medical condition, but I think it's worth it to keep fighting for a proper diagnosis and root cause. I am still looking for mine.
  4. Also wanted to add that how quickly it's run makes a difference for me. I get quite symptomatic if it's run too fast. We have a Hydration Clinic that is about 5 minutes from our house where I can just walk in and get IVs as needed. They will also come to our home. It's been a lifesaver with this condition! They see a lot of people with POTS and other health conditions.
  5. I did much worse on BC pills, I actually think the pill (Yaz) may have partly triggered my POTS.. it had a diuretic in it, which I didn't know at the time. I felt much worse on the pill and also during both of my pregnancies (in the 3rd trimesters, my POTS was horrible). So, there may be a hormonal component for me and maybe for others as well. Some may not have the same reaction, but just be aware that it could happen.
  6. I seem to do better with the lactated ringers (less side effects). The OB was insistent that I receive the LR while pregnant. I've done a little research on it and it seems like in general, the lactated ringers are somewhat safer. They are actually doing a clinical study on this right now as well that I am following. I think there is a certain medical condition where saline IVs are preferred, but I don't remember what it was, I'll have to read up on it. I am getting 3 bags of LR a week now post-partum and it's helped a lot. It took the bradycardia away and so far I've felt much better than I did last post-partum. https://www.medpagetoday.com/meetingcoverage/sccm/71414
  7. Wow, that is a really rude reply by your doctor! It's so frustrating to deal with that on top of an illness. I think it would be a good idea to get a second opinion as well. Have they checked for Sjorgen's Syndrome? "PotsGirl" has a lot of information on her blog about Sjorgen's Syndrome and the testing for it. From what I understand, the diagnosis can often be missed. https://potsgrrl.blogspot.com/2011/09/what-is-sjogrens-syndrome-and-how-can.html
  8. I just wanted to respond to this... I think fluid balance is a key issue in my POTS. I am still trying to figure out WHY and what is going on though. At the end of my pregnancy, during what I would imagine is a huge fluid shift, I got very severe POTS attacks. After I delivered, the attacks went away, but I got severe bradycardia. My cardiologist told me to get 3 IVs a week, as the bradycardia was due to the fluid shifts after the pregnancy. The 3 IVs did seem to "fix" the bradycardia (never had an issue with this before). I constantly feel dehydrated, no matter how much I drink. I always feel better after the IVs. I went to a specialist and had a lot of testing and he found that I have undetectable levels of vassopressin. That is the hormone responsible for fluid balance, so that may be part of the picture- still trying to figure it all out. My POTS started after a case of food poisoning (also a fluid shift)... yet I have not been able to get better for 13 years. As for the dry skin, I am not sure, but Vitamin C might help.
  9. I had rapid weight gain when I came off of a birth control pill. Some medications can cause this. I think POTS can contribute due to water/sodium imbalance. It helped me to cut back on carbs, as carbs seemed to make me really hold onto the weight (maybe due to water retention). This could be a number of things, I hope you are able to get some help
  10. Just curious.. How old were you when you got POTS? I was 22 years old, never had symptoms before that. What do you think triggered it? A severe case of food poisoning and a reaction to birth control pills, symptoms came on within days of these events What (if anything) has helped manage the symptoms? The only thing that has helped has been lactated ringers (IVs) and getting my ferritin(iron stores) up. These two measures have helped with the frequency of attacks, but I am still quite disabled from my POTS and have severe fatigue as well.
  11. I get low pulse pressure all of the time. Sometimes as narrow as 15pts. I tend to feel bad when this happens. I am not sure why it happens- would love to know.
  12. Has anyone else noticed that their heart rate is influenced by how they are laying in the bed? Maybe I watching my HR too closely now, but since I've been post-partum, when I lie on my left side, my HR drops 8-10pts lower than it does when I lie on my right side. Does this happen to anyone else and what is the reason why?
  13. Just wanted to post an update- I went to the cardiologist and had some imaging done that ruled out postpartum cardiomyopathy.. he also read my heart halter and said everything was falling into a normal rhythm. He feels that the bradycardia is an autonomic issue that is occurring because of the large fluid shifts after pregnancy. He recommended 3 IVs a week until I started to improve. He said things like nausea, fever, and pain (all of which I've had) can make heart rates go up or down. A part of me wonders if this could also be an epidural side-effect? He also checked the thyroid to rule out "Sheehan's Syndrome" which can sometimes occur after pregnancy but everything was normal. I have seen some improvement since getting the IVs. My HR wasn't below 45 last night and it's been better during the day. Never thought I would complain about a low heart rate after dealing with tachycardia for 13 years... but I just want to see it above 50 at night now! I just wanted to post in case this helps someone else with bradycardia.
  14. I'm so glad that you are feeling better! The biggest thing for me when I was feeling better was to avoid getting overheated and being really careful with blood draws. If I didn't get an IV after a blood draw, I would crash again. Hydration is a key issue I think, so just keeping an eye on that. What do you attribute your improvements to?
  15. This happened to me severely when I was in my third trimester. I coped by cutting meals in half and cutting out basically all carbs and sugar. Once I got my ferritin levels up a bit, it seemed better. After delivering the baby I am not having this problem, so there could be a hormonal component?
  16. Thanks- I wondered if it was the result of the epidural which I had this time.. I still haven't been able to get an answer as to why this is occurring, but I'm back on a heart halter again, so maybe I can get some answers soon. @Shannoncr Wow, that is scary that you passed out... how low was your heart rate when that happened? Last night I saw my heart rate at 39, really scary!
  17. I haven't moved, but when I visit the mountains in VA I tend to feel better- a very moderate climate. I've considered moving though.
  18. Hi Everyone, I finally had my baby It was a long delivery (22 hours), but I made it. He is now 4 days old and doing great. I thought I was recovering a little better than last time. However, I started to notice that my HR is now going DOWN.... at first I was excited because it was so high during pregnancy and I was suffering horrible bouts of tachycardia. It kept going lower & lower to the point that it was 44 last night and I was really short of breath. I ended up going to the ER and they monitored me. It was 44-48 basically the entire time I was there. They did an EKG and a chest X-ray. They also found elevated D-Dimer levels, so they did a CT scan of my lungs and and X-ray of my abdomen. Everything came back normal. They didn't know the cause for the lowered heart rate. It has been around 44-48 while I sleep and mostly in the 50s during day now, sometimes in the 40s, even when I'm sitting up. When I stand it's only 70-80 which is crazy for me. I'm not as worried about that as I am the 40s rate. Has anyone ever heard of this post-partum!? I am breastfeeding as well, if that makes a difference. I am a little worried. I spoke to my cardiologist and he wants me to get a full thyroid panel, which for some reason they didn't do last night at the ER. I am also going in on Tuesday for another heart halter. It's so frustrating because I was just evaluated for tachycardia. My anxiety is so high about this, especially after the stress of the birth. Thanks for any insight.
  19. This page has a ton of information about the Hypermobility Type: https://edsinfo.wordpress.com/resources/benign-hypermobility-syndrome-vs-eds/
  20. Pistol - There are blood tests for most forms of EDS, but not for Type III, the Hypermobility type, which a lot of people with POTS have. I do think it's important to be diagnosed properly. I was actually misdiagnosed for 1 year. I was told I had it. However, when I saw the specialist, he confirmed that I definitely didn't. It was really important, because he actually diagnosed the root cause of my back pain and I finally got treatment! There are different types of subsets of the Hypermobility type as well. It's an interesting field and more information is still emerging. I read a lot about it when I thought I had it.. you can also have Joint Hypermobility without having Hypermobile-EDS.
  21. All of the autonomic centers that I've been to have required me to be off of all medications for a period of time before the testing. From my understanding, the autonomic tests are not accurate with most medications. There may be some exceptions, they send you a list. I know some medications can change your blood work as well. You could call the autonomic center and ask.
  22. That is awesome! I am going to follow your protocol once I give birth & hopefully it will help! I've never tried to get all 3 up at once so I'm hoping it will make a difference.
  23. I saw Dr. Alan Spanos in Chapel Hill, NC. He was excellent. In the end I wasn't diagnosed with EDS, but with features of Hyper-mobility. He did a really thorough evaluation and explained things very well. I've heard of other EDS specialists as well. I think the online support group "Inspire" is dedicated to EDS and you can find a lot of information there as well.
  24. From "The Journal of Neurological Research" It found that 25% of those with low B-1 who were treated saw "significant improvement" in their POTS symptoms. It also mentions that Vit D, Iron, & B-12 are often low in those with POTS & should be treated. https://www.tandfonline.com/doi/abs/10.1080/01616412.2017.1331895?tokenDomain=eprints&tokenAccess=4y3WQzFvEfGJXJYDINDM&forwardService=showFullText&doi=10.1080%2F01616412.2017.1331895&doi=10.1080%2F01616412.2017.1331895&journalCode=yner20
  25. I've been doing some research looking into nutrient-deficiencies and POTS. I found a study published in "The American Journal of Physiology, Heart & Cardiology" which found that Vitamin C can improve blood flow in POTs patients by 40%! Yet another thing that I have not heard from my cardiologist or autonomic specialist. Just an FYI. I am going to start a higher dose once I deliver my baby & see if it helps. I haven't been tested for Vitamin C yet.. is there a blood test for it? I'm not sure. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3191072/
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