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About Bluebonnet08

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  1. Acceptance or defeat?

    Thanks Pistol... glad I could help a little. I understand exactely how you feel though and definitely have my days of discouragement as well. However, my HOPE is that research will improve our situation. Lainy - The supplement is actually called "Deep Sleep". I found it at a Health Food store. Nothing has ever helped my sleep and I am super sensitive, but this did! I can't take it while I'm pregnant and I can't wait to deliver this baby to take it again and get some restful sleep! haha I am not sure if I can post a link to a product on here, but it's on amazon.
  2. Acceptance or defeat?

    I know what it's like to feel this way. However, I have reminded myself that as hard as it seems, no one can predict the future. There is research going on in the field of dysautonomia and some people do find their root cause, which can sometimes be treated directly. I know it's easier said than lived, but that is what I keep striving for. I have not found my "root cause" yet. I have been ill for 13 years, since I was 22 years old. It's been a battle, a long road, but I am still going to fight. It is frustrating to see other healthy moms so easily doing what I cannot, it's hard. Yet, we never know what others are going through either. I truly, truly understand where you are coming from. I try to keep my focus on "the next steps"... for me that is seeing two new specialists after I finish my pregnancy. I've decided at this point, I will only see those in the top of the field, regardless of what that takes. I try to write down my symptoms and address them one at a time. One of the most important I've found in managing the emotional aspect is sleep. Before I was pregnant I took a "deep sleep" herbal supplement that helped. It was the only thing that helped me so far (along with magnesium at night). I honestly think it's okay to feel resentful sometimes.. it's okay to embrace what you feel... this illness is HARD. However, I don't think age or anything else is nessacarily a barrier to getting well in the future. You never know what will happen that could create improvements or even full wellness for you. As my husband says... nothing is possible until it is! I think about a disease like B-12 deficient anemia in the early 1900s... people used to die from it, but they discovered the root cause and now people can just take a vitamin and survive. Things change all the time in medicine and treatment. Sorry if this is a little all over the place. I have the same thoughts and feelings as you, but just remember that you don't know what the future will hold
  3. Let's talk about standing/active heart rate!

    Now that I'm in my 3rd trimester of pregnancy.... Resting - 70-80 Sitting - 95-105 (sometimes as high as 115) Standing/doing something basic while upright- 110-130 "Attack" - 135-150 Before pregnancy it was all slightly lower. As for how long it takes to slow down... when I have an "attack", which comes on randomly, it lasts for about 15 minutes. It goes up VERY quickly and falls back down very quickly again. Very scary though because it occurs out of the blue. Wanted to say... I"m not on any medication, but do IVs twice a week. Before pregnancy they pushed the HR down a bit.
  4. Hyperadrenic POTS

    Mom to Giuliana- what were your main symptoms that caused you to leave work? Elevated heart rate? Did it improve a lot after 35 weeks?
  5. Scared to Death

    I am sorry that you are going through this! Yes, it can and does get better for many... there are doctors who will help and there is more than one autonomic center in the US that will diagnose and treat POTS. There are many treatments and some doctors will be able to find your root cause. I am continuing to look for mine (may be low vasopressin). As for short-term treatments to help you improve, I would HIGHLY suggest IV fluids. I get lactated ringers at a hydration clinic. The fluids typically help to calm an initial flare and have helped me greatly in the past with coming out of flares. Increasing water/salt, compression hose, elevating feet... do you have a FitBit or a way to monitor your HR? That might be a good starting place too. I know it can seem really dark, but remember it's temporary. Things can and likely will improve. You will find lots of support and resources here.
  6. What causes Tachycardia for you?

    Causes of tachycardia for me: PREGNANCY... heat, dehydration, walking up stairs, exhaustion, extreme stress, being upright for too long, certain times of day (afternoon) seem worse, humidity, not getting my IVs on time, hunger, most medications, BIRTH CONTROL PILLS, hormonal fluctuations, certain vitamins Those are just a few I can think of. Sometimes they still come out of the blue. Before I was pregnant and up until about 27 weeks, I was managing them more with IVs. Now, late in the pregnancy they are becoming unmanageable.
  7. Hyperadrenic POTS

    Thanks everyone. Mom to Giuliana- I am almost 31 weeks now and my symptoms are at their worst. A few weeks ago I was doing much better. Now, I can barely walk into a store without setting off an attack. It's getting a little scary how quickly my HR is increasing and how high it has been for simple things. It was much, much better before this period in my pregnancy. It encourages me a little that your worst symptoms were 32-35 weeks. I'm hoping that mine will get better again and not stay this way until I deliver. It's so scary. After I deliver I hope I can get an appointment at Vanderbilt. I am currently getting 2 IVs a week which were helping, but now aren't helping very much. Baby still seems to be healthy, which is good.
  8. Sonya - how did they arrive at the diagnosis of hyperadrenic POTS if you don't mind me asking? I really want to get in to Vanderbilt after my pregnancy. What are your attacks/episodes like? Do you feel a sense of impending doom or like you will die? What do you do to manage the attacks? Mine have gotten so bad with the pregnancy, especially at the end. I am getting 2 IVs a week, but it's not enough to keep them fully at bay.
  9. Hyperadrenic POTS

    Is there a fast way to calm it down or get through it? It's getting so bad and I feel like I'm going to die every time, although I've been through it so many times and logically I know I won't
  10. Hyperadrenic POTS

    Hi Everyone, I have been reading about Hyperadrenic POTS and wondering if that is what I have. If you were diagnosed- what was the criteria that they used? What are your symptoms like and how do they differ from normal POTS? When I have "attacks" or "episodes", they come on suddenly, sitting or standing..... my heart rate elevates to approx. 150bpm, I feel like I can't breathe, feel like I am dying every time with a horrible sense of impending doom. Usually my heart rate goes down after about 10, sometimes 15 minutes. Does this sound like hyperadrenic POTS or just regular POTS? Sorry for all of the questions... my symptoms have always been bad, but getting so much worse with this pregnancy (almost 31 weeks). I had a terrible episode yesterday that lasted a long time. I get so much anxiety from them and don't understand why they are so bad. Thanks for any help.
  11. Dysautonomia flare?

    Yes, I have random flares. For me, they seem to follow a hormonal pattern. You could keep records and see if they are occurring around a certain time in your cycle. When I am in a flare, I get IVs now at a Hydration Clinic. It seems to push back my epsidoes and my symptoms go down, at least for a little while. I have been much more symptomatic now that I am pregnant (third trimester).. I am getting some shaking/chills episodes that my OB said were hormonal....I think hormones do play a part in POTS.
  12. Folate Deficiency.

    Interesting - I was just reading about this on one of the CFS forums. The poster said she had the MTHFR mutation and that is why her doctor thought she was deficient. She now takes L-Methyfolate and B-12 shots and she said it has helped a lot with her symptoms. I would be interested to hear if it helps you as well. PPIs can definitely effect stomach acid and your ability to absorb nutrients. They are linked to a lot of things including kidney disease, cognitive decline.. I used to take them for awhile, but stopped. My heartburn was being caused by a birth control pill, so it eventually subsided. Maybe probiotics could help?
  13. Heart Halter

    Thanks everyone for your replies! Peter- that is so cool about the personal ECG. I am going to look into that! Might be helpful.
  14. Heart Halter

    Has anyone worn a heart halter? I wore one about 5 years ago, before I first got my diagnosis. Because my epsiodes have been increasing, my cardiologist wanted me to wear one for a month to make sure that everything is still okay. He thinks it's just because of the pregnancy (I am almost 30 weeks) but wants to make sure. It's kind of frustrating to deal with it, but I guess it's good that it rules out anything more serious with the heart. The episodes feel serious and scary, but the cardiologist says that my heart is still beating in a normal rhythm, which is good.
  15. HI Caro- is she taking any type of birth control pill? It seemed to be a huge trigger for my POTS. I just wanted to let you know that it can effect some people very badly