Bluebonnet08

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About Bluebonnet08

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  1. Showering and pots

    I feel like the shower is one of the hardest parts of my day. This morning my HR was 150bpm when I got out. I'm sorry, I wish I could be more helpful. I think the morning is harder than the evenings. Do you get IVs? It's usually easier for me to shower for a few days after the IVs.
  2. Starting home fluids and lupus question

    Hi - I currently get 2 IVs a week at a Hydration Clinic as ordered by my OB. It does seem to help me a lot. Before I was pregnant, I was getting IVs once a week for the past 2 years. The IVs have helped significantly with my blood pressure and HR. They also decreased the POTS "attacks" and helped my energy by about 5-10% overall. I was tested and found that I have very low vasopressin, so that may be in part why the IVs are helpful. Now that I am 22 weeks pregnant, I seem to need the IVs more and the effects don't last as long. There is definitely a hormonal component to the illness. I am sorry about the lupus, I don't know much on the topic. I will say, however, that I think IVs are a great treatment for POTs and CFS. There is a lot of evidence based research in support of the IVs for our condition. I'm happy to send you some articles if you would like.
  3. Hi Everyone, I am currently 22 weeks pregnant. Before this pregnancy (which is my second), my condition had stabilized a bit. I was managing the symptoms with IV fluids and while I was still having a lot of problems, I felt better. During the past two weeks, I feel like my condition has worsened again. My blood pressure has been falling quite low (78/46 one day) and my HR has been up (150bpm this morning). I am getting 2 IVs a week now. Did anyone else get worse with their pregnancy? Did anything help? Did it improve during the 3rd trimester? Finally, should I try to have a natural birth again? If my HR is 150bpm just walking around what would it do during actual birth?? Thanks!
  4. Pregnancy and IVs

    Hi Everyone, I just found out that I am in the early stages of pregnancy. I had my first child 5 years ago, while symptomatic, but without knowing that I had POTS. I had a very rough time, as I was not getting IVs and didn't have a diagnosis. I am still struggling, but the saline IVs have helped me manage my symptoms. Does anyone know if it's possible to get them throughout the pregnancy? I was getting them every 1-2 weeks. Also, for those who have given birth while having POTS, any advice or recommendations? I had an extremely long (natural) labor with my first and it was almost unbearable. At one point mine and the baby's HR were dangerously elevated. Everything ended okay, but it scares me to go through it again. However, I don't know if medications would end up making me worse. Thanks
  5. Neck Problems

    Thanks, I will check out the other posts. I have terrible/debilitating fatigue issues, I am not sure where they are stemming from, along with fairly severe POTS, neck & back pain, and sleep disturbance. I also have some depression, associated with my cycle. I have been trying to get the root of my problems for a long time now. I want to make sure I am being comprehensive and getting the proper testing. It was suspected that I might have EDS, but I was evaluated and found that I did not have it. The doctor thought I might have joint hypermobility syndrome (related to EDS, but milder).
  6. Neck Problems

    Thank you so much for your reply. Do you have a recommendation for where to get the testing done? Do you mind sharing what your results were? Were you able to get some kind of treatment? I am just really confused about the neck issues. I can't seem to get medical advice on where to turn next. I've been in pain now for almost 8 years.
  7. Newbie-Frustrated

    I can't eat anything that is high carb/ high sugar or I will get those symptoms after a meal. I've done better on a low carb diet. I like it now and it seems like it helps to control my symptoms a bit.
  8. For the Ladies Only

    That sounds so awful.. I am sorry to hear you are going through this. Yes, I experience terrible, terrible symptoms before my period.. it is like a nightmare. Fortunately my HR doesn't go up to 150bpm anymore, but I get very severe symptoms before my cycle start. I get saline IVs every two weeks now and it helps control my high heart rate. As for the other symptoms, I am still looking for some help. I have tried the "Deep Sleep" herbal supplements for sleep around that time of the month, which help a little. I wish I could help more, but know you aren't alone. Have you tried saline IVs?
  9. Why do I feel this way?

    I think hormones have a lot to do with the anger issues that you describe. I've kept a really careful record and notice it always coincides with the end of my cycle. I know it can be awful. You said it correlates with eating beef? Do you buy organic beef? If it is non-organic, it could be the hormones in it that are affecting you. There are 6 FDA approved hormones in non-organic beef, including testosterone... just wanted to mention that since you thought it could be correlated. Since I've gotten ill, I'm very sensitive to things I wouldn't have been before.
  10. Neck Problems

    Hello- I had a question about getting evaluated for neck issues. The range of motion is severely restricted in my neck and I have a constant low grade pain in the upper part of my neck. The pain sometimes causes headaches and it refers down the back to cause fairly severe back pain. I had some x-rays done by a chiropractor and he said I had a misalignment of my L1&L2. Someone had mentioned something about cervical instability. I really want to get a more complete evaluation, but I am not sure what the next steps would be. Would I need to get an MRI, upright MRI, flexion extension? I am just not familiar with the proper tests and then I am not sure who would evaluate them. I was evaluated for EDS last year, the doctor said I did not meet the criteria, but may have joint hyper mobility syndrome. I am not sure if this is causing the terrible pain, but I feel like it may be making the POTS worse. Thank you so much for any insight!
  11. Doing worse. Ideas?

    Saline IVs help me when my BP starts to crash really low. I think It's outrageous that your doctor won't prescribe them and feel they are a very SAFE and proven treatment for POTS. Much safer than many medications that they hand out. If you see a POTS specialist, they can make sure you get a prescription. If you live in a bigger city, you can look for a Hydration Clinic... we have several in my city. You don't have to have a prescription to go there and they will come to your house as well.
  12. Valsalva maneuver-test

    A few months ago I was evaluated at an Autonomic Center. I was unable to perform the valsalva maneurver test even though I was trying really hard. The doctor didn't say anything about it. Does anyone know what it means when you can't even complete the test? My QSART was also slightly abnormal, but the skin biopsies showed that the nerves in my legs were working properly. I am still hoping to find some kind of root cause or explanation for my horrible symptoms.
  13. Heat Intolerance

    I feel for you because I am very sensitive to the heat too! Definitely bring iced water with you everywhere and sip it. Wear "breathable" clothing like cotton, some fabrics are so heavy! I have an handicapped placard that I use during the summer to park close and minimize my time walking in the heat. I've heard of cooling vests and other things you can wear. I might try them this summer as I live in a very hot climate. If you can, consider investing in a remote control starter for you car. I NEVER get in a hot car... I always let the AC run for 10 mins or so. If not, it is a sure way to trigger an episode for me. I try to stay inside on very hot days. It's just not worth it. Early morning or later in the day is better if you must go out. You could also try to call the school and explain the situation. Maybe they could move the ceremony to an air conditioned location? I can't imagine that you would be the only one affected by the heat. It might be worth a try! Good luck.
  14. IV Saline and POTS

    I have been getting saline IV treatments for almost 2 years now. It was recommended by a POTS doctor that I see. I was first getting them at the doctor's office, but now I get them at the Hydration Clinic that just opened up near me. More and more of the larger cities are opening Hydration Clinics and you can call that day and make and appointment and they will even come out to your house. Like you, I am VERY sensitive to medications and even the IV has some side-effects for me. My BP can fall pretty low 80s/50s and my HR can go high (130-150bpm) at times. I also experience debilitating fatigue. Because I am so sensitive, I started only getting 1/2 bag of saline each time. I have them run it very slowly. Sometimes about an hour after the IV, I have an episode. For the first 3 days after the IV, I feel worse. I have less energy, typically sleep worse and can have weird symptoms like increased shortness of breath. I almost always get severe depression from the IV for one day and cry and feel so down. It's a really horrible side-effect and quite scary. That being said... after that 3 day period, I see an increase in my energy (10-30%) for about 8-10 days. I feel more able to do things and my mood and outlook are better. I literally feel like my depression is completely gone during this period, which is huge for me. It is very rare for me to have an episode during this period, it kind of holds them at bay for awhile. Over time, it has reduced the intensity of my tachycardia episodes. I've worn a HR monitor for years now. When I used to have attacks, my HR would be 135bpm-150bpm which is horribly scary. Now, I still get episodes (less than before), but my HR doesn't go up as much!! I haven't seen it go above 125bpm in over a year and most of the time it doesn't get above 110bpm which is HUGE. I feel it's all due to the saline IVs because I went for 10 years and nothing had helped the horrible HR episodes. I get the IVs about once a month. I hate how badly I feel for about 3 days, but it's nice to get some symptom relief. It's not a cure-all, but it has helped me, more than anything else I've tried. I think my condition must have something to do with blood volume because of how much better I feel after the IV, but I still haven't found a way to fix this frustrating illness. You can see what works for you in terms of an IV... experiement with the amount (you can even do smaller 100ML bags) and the speed. Also look for a Hydration Clinic near you! Good luck
  15. Flying

    Has anyone had any experience flying while having this condition? I used to fly quite a bit when my condition was milder and I wasn't diagnosed. Now that it's more severe, I am not sure how I would handle flying. I've read that it isn't good for people with POTS. Do you have any experience flying and how did you handle it? Was it a huge stressor on your body and/or did it take you awhile to recover? Do you think the length of the flight matters? My husband would like for me to accompany him on a business trip, but the flight is almost 6 hours. I am just not sure! Thanks for any input.