Jump to content

Bluebonnet08

Members
  • Posts

    143
  • Joined

  • Last visited

Everything posted by Bluebonnet08

  1. 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
  2. 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).
  3. 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.
  4. 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.
  5. 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?
  6. 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.
  7. 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!
  8. 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.
  9. 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.
  10. 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.
  11. 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
  12. 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.
  13. Wow, thank you all so much for the support and replies! I really appreciate you taking the time to respond. I'm sorry to hear others have gone through this, but also encouraged to hear that some are feeling better! Kalamazoo- I'm sorry that Yaz seemed to cause this problem for you. I also believe it was the major factor in my illness. I've heard of many women getting very ill from Yaz. RichGotPots- Thank you so much for all of your suggestions! I am definitely going to look into those suggestions. It means so much to get some insight and support. I've been trying to figure out my next steps and this has been very helpful!
  14. Hi Everyone, I am new here, but not new to POTS. I was healthy until 11 years ago when I got food poisoning, mono, and started a birth control pill all within the same month! I became very ill with fatigue and developed POTS episodes (labeled then as “panic attacks”). It took many years before I was properly diagnosed with POTS via a tilt table test. Since then I have had many tests looking for a “root cause”. I’ve been to Sentara in Norfolk and had a skin biopsy to look at the nerve fibers in my legs, they also ran a huge panel of tests (looked for autoimmune, paraneoplastic, organic acids, mitochondrial disease). Everything came back as normal. Another specialist has ruled out EDS. I just can’t seem to find the “root cause”. I’m so frustrated, as I’m sure many of you are, because I have been suffering for so long. I have a toddler and I cannot take care of him without full time help. My main symptoms are: debilitating fatigue, episodes of high HR or low BP (triggered by walking around, heat, stress, etc), sleep disturbance, low stress tolerance, overall muscles achiness, and depression over this situation. There are many other symptoms, but these are the main ones. I am also VERY slow to recover from an illness. I haven’t been able to find a doctor who was willing to sit down with me and really analyze and synthesize my background and information to try to determine root cause. I have done MANY treatment plans but haven’t been able to find much symptom relief and I have not been able to improve my energy at all. Right now it hovers around 10% of normal and I have to lie down most of the day. I’m really struggling because I have no idea what steps I should take next. I guess my questions are 1.) Do you know of any doctor or person that could help with really putting the puzzle pieces together and trying to figure out root cause 2.) How did you find out your root cause 3.) Has anyone been able to improve their energy levels at all? I’m relatively young and this illness has stolen so much of my life. I just want to believe that moving forward I will be able to get some type of help. Thank you for reading this and for any advice or insight!
  15. I believe that YAZ caused A LOT of my issues with POTS. Birth control pills in general are what triggered by first episode.
×
×
  • Create New...