Bluebonnet08

Members
  • Content count

    117
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Bluebonnet08

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female

Recent Profile Visitors

654 profile views
  1. My lightheadedness diminished significantly after I got my ferritin (iron stores) up.. have you had a full iron panel?
  2. Bluebonnet08

    Surges

    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.
  3. Bluebonnet08

    Surges

    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.
  4. Bluebonnet08

    No POTS? Clean EMG. Now what?

    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.
  5. Bluebonnet08

    LR vs Saline infusions

    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.
  6. Bluebonnet08

    Birth Control Pills to help with low BP?

    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.
  7. Bluebonnet08

    LR vs Saline infusions

    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
  8. Bluebonnet08

    No POTS? Clean EMG. Now what?

    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
  9. 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.
  10. Bluebonnet08

    RAPID weight gain

    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
  11. Bluebonnet08

    Questions

    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.
  12. Bluebonnet08

    Low pulse pressure with pics.

    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.
  13. Bluebonnet08

    Position and heart rate

    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?
  14. Bluebonnet08

    Bradycardia?

    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.
  15. Bluebonnet08

    Improvement from POTS?

    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?