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ethansmom

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About ethansmom

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    Advanced Member
  • Birthday 11/21/1981

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  • Gender
    Female
  • Location
    Florida
  • Interests
    Photography, E-Bay, yoga, scrapbooking, and of course spending time with my children, family, and friends!!

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  1. Right now I am pregnant so everything is higher- sitting HR is about 90, standing can go anywhere from 100-130 (depending on activity). THis is WITH the BB. Non-pregnant its more like 65-75 sitting and no more than 100 standing. I feel like it's well controlled, but since getting pregnant it's been wacky and I'm way more POTS-Y.
  2. I've had problems with vertigo for about 3 years now- I used to wake up with it every now and then, and suddenly one day I wokle up with severe vertigo and it never went away. I have found things that trigger it, and things that help- but I definitely think it's related to the imbalances in the central nervous system. Maybe something on my trigger or help list will help you too...otherwise, it's just another great POTS mystery. Things that make vertigo WORSE: 1) Eating foods I'm allergic to (too much wheat, dairy, or even sugar can trigger an episode) 2) Being dehydrated 3) Going too long without food 4) Overexertion, being too tired 5) Overstimulation (mainly in situations with bright, flashing lights or extra loud music, like a concert) Things that help (other than avoiding triggers!!!): 1) Acupuncture has been a LIFESAVER 2) A homeopathic remedy called vertigoheel 3) The allergy medication Zyrtec can stop or slow down a major episode 4) A chinese herb called Pill Curing (Curing Pill) is great for the inner ear and immune system, so I'll take a vial of it when I'm feeling really dizzy. Other than that, it's something I've learned to live with, along with everything else. But it's probably the worst symptom I have.
  3. I am pretty intolerant to sun as well. Heat bothers me, especially for prolonged periods of time, but being in the sun too long can wipe me out for days. I feel that it's because I get extremely dehydrated VERY quickly and therefore it takes a long time for me to replenish and rest up to recover, even if I feel like I'm drinking tons of fluids. I can tan easily, but I choose to stay in the shade over tanning, so I am semi-pale these days
  4. My guess would be that they are contraindicated for those with hypotension (low blood pressure), because that's the main function of BB's is to lower your BP. I alswo happen to have normal blood pressure so I have tolerated a BB for many years with no problems- in fact, it is my lifesaver because it keeps my HR normal and prevents palpitations and episodes of SVT. However, I did have to try several before I found one that worked for me, which is Sectral. Some of the others gave me major bradycardia, dizziness, and headaches.
  5. My husband has been with me since high school, when we were active, vibrant, crazy, young, and wild. So when I got sick in college, he knew it was for real, but at the time we had a HARD time dealing with it because we were so young and immature. He is not the most compassionate person, but he is a positive thinker, so he was always telling me not to be so negative, etc etc...and it almost destroyed our relationship. Fortunately, we pressed on through the hard stuff and "grew up" together. He has seen me in various states of health- from bedridden and wanting to die, to perfectly normal, active, and happy. ' We now are married with three kids and, even after being sick for 8 years, I still have to remind myself not to complain too much each day. I definitely tend to be a hypochondriac and a pessimist (self admitted) so this is something I am constantly working on. I try not to complain unless it's really bad, however my husband can clearly see when things are bad- I am pregnant with our third child and it has been horrid, especially at the beginning- no need for me to complain, because he knows when I can't get out of bed that things are bad. However, we still have a great time when things are good- and sometimes they are, and those are the times I try to be my old self and not think about my illness. Sometimes I feel like we've been dealt an extra difficult hand in life and I really strive to understand why everything has to be so much harder for us...but then there are days when I realize how truly strong I must be to have endured this for so long and still lead the relatively normal life that I lead. I just do most things dizzy and exhausted, but I am determined not to let the disease win and I hope my husband can see this for what it is. Regardless, there are ups and downs (just like in any marriage) and overall I feel very lucky to be with someone who is relatively supportive, has stood by my side, and loves me for the whole package.
  6. I had the same thing happen to me when I first started taking midodrine, and I was breastfeeding at the time so I thought that had something to do with the pain- but hearing your stories makes me realize it must've been the meds in general. However, it was only temporary and passed quickly. I am sure it was due to the vasoconstriction.
  7. I think hormones are a HUGE part of it for most of us- I recently realized this when I went from being 80% of my normal self for the last 7 years, then I got pregnant and BOOM I was down for the count within weeks and stayed that way until things have leveled out recently. That sudden shift in hormones really got me down- and at 7 months pregnant, I'm still only about 50% of my normal self, which I'll take over being 5%. Hoping after baby things will go back to normal and not the other way around. I also wanted to mention that for me, I found out after having a POTS diagnosis for 4 years, that Lyme Disease was the underlying cause and that autonomic nervous system dysfunction is very common in Lyme patients as a secondary condition, because the bacteria invades the central nervous system in many cases. That has been a fundamental piece of knowledge for me, because I can at least understand where it's coming from.
  8. I think hormones are a HUGE part of it for most of us- I recently realized this when I went from being 80% of my normal self for the last 7 years, then I got pregnant and BOOM I was down for the count within weeks and stayed that way until things have leveled out recently. That sudden shift in hormones really got me down- and at 7 months pregnant, I'm still only about 50% of my normal self, which I'll take over being 5%. Hoping after baby things will go back to normal and not the other way around. I also wanted to mention that for me, I found out after having a POTS diagnosis for 4 years, that Lyme Disease was the underlying cause and that autonomic nervous system dysfunction is very common in Lyme patients as a secondary condition, because the bacteria invades the central nervous system in many cases. That has been a fundamental piece of knowledge for me, because I can at least understand where it's coming from.
  9. I have had POTS through two pregnancies and am 30 weeks along with #3. I've had natural, unmedicated births with both and am planning the same with this baby, although this pregnancy has been WAY more symptomatic than the others. I am a bit nervous but trying to remain positive and remind myself that my body knows instinctively how to protect me and the baby, and that everything will most likely be fine. I did fine during both labor and deliveries, and fine postpartum other than some minor lightheaded spells which I think is pretty normal even if you don't have POTS. I have always felt personally that the potential for the epidural to interfere with my HR and BP was too big of a risk, and I didn't want an experience as beautiful as birth to be tainted by a bad reaction to the meds, so that was the reason for my decision. I did have some palpitations during the pushing phase of my 2nd birth, and my BP spiked really high a few times when the pain got intense, but overall I felt very safe delivering the way that I did. This time, my midwife wants to work with me at the end on NOT pushing so hard/so much so that my heart rate will remain stable, and she has some cool ideas on how we can breathe through the desire to push and basically let the baby come out by herself I've had one delivery in a hospital, and one in a birthing center (and we're definitely planning the birthing center again this time)- the major difference was that the birthing center was far more supportive emotionally, and they of course don't have pain meds available so the epidural is not an option. The hospitals push the meds way more than they say they will, so if you are adament about going natural, you have to really be strong in that decision because the power of persuasion is strong when you're in a state as vulnerable as labor. Make sure your support person knows your feelings and desires and will be able to advocate for you in the event that you are unable to. I wish you the best of luck with your little one and hope you have a beautiful, perfect birth and healthy baby!
  10. I am 30 weeks pregnant and have been in a POTS flare since about 5 weeks along. I hadn't had severe symptoms at all in about 7 years (since before my first pregnancy) so I am sort of re-learning how to cope. Weeks 5 through 15 were awful, I was completely bedridden and horribly nauseated, dehydrated, etc...and around week 20 I began to slowly feel halfway human again, which I am so grateful for. However, my body feels very weak and deconditioned due to spending the better part of 7 months on the couch and unable to exercise or eat or sleep properly. The last month or two I've been mostly keeping up with normal activities and had decent energy, which is the great thing about the second trimester, but now that I'm hitting week 30 I've noticed I'm getting more tired and unable to keep up. I know some of this is normal for pregnancy (I've already been through two POTS pregnancies with little to no cardiac symptoms) but this time I am really struggling with my heart rate and related symptoms. The past week or so it skyrockets to 130-ish every time I simply do something standing up, and I am subsequently experiencing constant air hunger/shortness of breath, dizziness, and fatigue. I spend a lot of time sitting but this is certainly not helping with the deconditioning issue, and I've gained 45 lbs already. I had two main questions 1) did anyone else get worse in the 3rd trimester and 2) what can i do to help myself feel better? The warm weather in FL is coming soon and I am sooooo nervous about dealing with my symptoms then. Right now I am doing the following: 1) Trying to drink half my body weight in ounces of water each day, with electrolyte (Emergen-C) added during tachy times of day 2) Getting plenty of sleep at night and taking a short nap when I can 3) Avoiding sugar, caffeine, carbs, and other foods that increase my heart rate 4) Just started taking magnesium last night, because palpitations have gotten really bad and I'm afraid of having an episode of SVT, which I'm also prone to. Anything else I should be doing? I do take a BB (Sectral) once daily, but it seems to wear off after half a day and increasing my dose made me horribly sick and dizzy, so I am trying to stay on the lower dose.
  11. I took Florinef and Sectral with my first pregnancy and everything was fine...second pregnancy just took Sectral, and same with this pregnancy. I have researched them all and found that the benefits greatly outweigh the risks for me. Sectral is a pretty safe BB for pregnancy, I think it's a category B.
  12. I am 30 weeks pregnant and experiencing the exact same thing! This is my 3rd pregancy with POTS, and I have experienced this with the other 2 as well- although this time around, my POTS symptoms are quite severe and so I think I'm noticing the changes more- the strange feeling in my chest, slightly increased heart rate, and flushed face- each time I have a Braxton-Hicks contraction. I'm very nervous about the "real" contractions this time, as I have chosen to have natural, out-of-hospital births (there have not been any previous complications from the POTS) but if I remember correctly, I didn't experience this when I was in labor before- or maybe I just didn't notice because of everything else going on! I think we are just more sensitive to this than the average woman would be, because of the cardiac "awareness". Best of luck with your delivery and postpartum- you don't have much longer to go!
  13. Congratulations! She is absolutely beautiful! I am expecting my first baby girl in May after two boys, so looking at your photos makes my heart sing =) How are you doing post-partum? How was your birth?
  14. A GIRL!! I've been waiting my entire life to have a daughter, and the ultrasound last Monday revealed that indeed that is meant to be =) I have two wonderful boys, so this will complete our little family perfectly! This also explains a lot of the POTS difficulties that I've had with this pregnancy- I'm sure that the baby being a different gender explains many of the new and different symptoms I'm having! Things are better now that the first trimester is over, but I'm nowhere near my normal self health-wise. I wonder how many of you other mommies out there had more difficult pregnancies with POTS and girls? Maybe it has something to do with production of additional female hormones? I am trying to figure that out, because I felt so great with my boys. Anyway my husband and I are THRILLED and can't wait to meet our little princess!
  15. I am not a fainter, but I if I did pass out I would definitely go to the hospital the first time (because it's NOT normal for me). However, I tend to avoid the medical community like the plague, except when necessary, so at this point I have to say I would only visit the ER if I had an emergency injury or a heart arrythmia, as I do occasionally get SVT.
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