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Everything posted by Elisabeth417

  1. Dear Beacher, My heart goes out to you! You've had such a tough time. I want to give you hope because you have so much joy happening for you now. I was a first-time mother when I was 40, 23 years ago, so I know how special it is when you think that you'll never be a mother or a grandmother. and then this miracle happens! I have one son and he is the world to me! If you read my posts, you will see my story. I hope your request opens up a new discussion because, unfortunately, I have not found an answer yet and I have been bedridden for 4 years now. But, I have a new naturopath and s
  2. Dear Maisie, Hello! Something told me to look at this website, which I haven't looked at in quite awhile, and now I know why--it was because of you! I would love to talk to you and hear more of your story, but I have to tell you that, alas, I am still bedridden with major symptoms and, unfortunately, have still not found a doctor, still do not have answers, but DO have more insight into what happened to me. I've gone back to the beginning to explore more of how it all started because I believe it started a year before I REALLY got sick. It may have actually been a lifetime of coming.
  3. Hello Everyone! Yes, I am still alive!!! That's the good news (which, of course, IS very good news.) But, unfortunately, I am not doing well at all and have taken a turn for the worse. I'm honestly not sure what's wrong with me--dysautonomia, adrenal fatigue, chronic fatigue, deconditioning, mental anguish--it's probably everything. It seems like no matter what I do--whether I try to get better by moving or stay still by bed rest, I just get worse and worse. It's obvious that part of the problem is not being able to conteract gravity anymore. I do suspect that I had a major problem
  4. Yes, I can relate BRC! I've read also that heat dilates blood vessels and when we stand up the dilated blood vessels in the legs expand and hold even more blood down below and pull it from the top of the body. This happens during a shower, too. As for me, I'm exploring whether I actually do have a cerebral spinal fluid (CSF) leak. So many of my symptoms are not only dysautonomia, but like people talk about with a leak. I've had an MRI and doctors say no, but this was a lying-down MRI and I've read since that they can't tell unless it's a standing-up MRI. This could also show a Chiari mal
  5. Ugh--just checked the weather report. Temperatures expected to reach in the 100s this weekend in my area! In my earlier life, heat never bothered me--I just went along with it, but now I adds greatly to my incapacitation. As a matter of fact, all weather--one big one is when rain is coming and the barometer drops. Anyone else? https://patch.com/california/napavalley/napa-county-under-heat-advisory-weekend-national-weather-service?utm_source=alert-breakingnews&utm_medium=email&utm_term=weather&utm_campaign=alert
  6. BRC-So scary about lying on the bathroom floor! And having the arm pain. I often have chest/arm tightness, numbness and pain. I once did go to the ER and they did an EKG, chest x-ray, etc. and said I was ok. I think with me, it's because I don't have enought blood going to my heart for what I'm asking it to do, at least at the moment. Have you had it checked out just to put your mind at ease? You've been through so much. But, you're still here! Sending you good feelings from California. Where do you live? It's pretty hot here (in the 80s) and we had to install air conditioning just for
  7. Hi Everyone, I'm feeling a little bit better, so I want to tell you all what happened when I went on, what I'm calling, the Astronaut Recovery Plan. I put the link up in one of my previous posts. Anyway, the idea is to get more upright every 20 minutes to recondition yourself to the pull of gravity. So, in the morning I gave myself one hour to try to wake up--extremely hard to do, even just lying--but then I started every 20 minutes to sit or stand all day long for over 12 hours. Up, down, up, down, up down--blood in head, blood out of head, blood in head, blood out. Sometimes I just
  8. Hi All, Just wanted to check in. I'm sorry I haven't been able to post. I've been having a "situation" from trying to recondition which has set me back immensely. I'll post soon as to what happened. Let's just say for now that I expected too much too soon and most likely pushed too hard and now I'm experiencing the brutal aftermath. Take care, everyone!
  9. BRC-Wow, what an experience! Thank you so much for your story and I'm SO, SO sorry that all of this has happened to you. I'll write more when I have a chance to read everything in detail. You have many great recommendations. Right now I'm trying the getting upright just a little for 1-2 minutes every 20 minutes. I'll let you know in awhile if I see an improvement. Take care everyone. Let's stick together and see if we can beat this or at least improve our lives. I'll be reading all the previous posts in detail, too, and trying some of the techniques suggested. I think that all of us on
  10. BRC--You are amazing! Horsey Rides, Chopping Vegetables on the floor.! You are an unbelievable woman!!! What a wonderful attitude you have. I can learn much from you. I try to stay upbeat, but I crash a lot. Just reading your post has really uplifted me. Thank you! Yes, I've heard of Hyper POTS and I do think I have this. I'm still not sure what exactly happened to me as it came on so suddenly. The right side of my body just totally dysfunctioned. One second I was fine and the next I was disabled. Did it happen like that for you, too? You said it happened after having your bab
  11. BuffRockChick--thank you so much! You are so encouraging! OK, yes, movement--I'll keep going. Sometimes I want to give up, but obviously that's not the answer! I'll do the things that you mention more and more. I am at my worst in the morning and I truly feel like I will die--honestly, I don't take that lightly--I truly feel like my heart and my body will just stop. As the day goes on, I feel a bit better and can do a little more and by midnight, I can actually do some semi-strenuous bed exercise--nothing upright and really feel best around 2:00 AM! I then don't want to go to bed (and o
  12. Thank you for welcoming me, haugr! I just realized that I didn't answer all of your questions regarding blood pressure and heart rate. It's very hard to get an upright blood pressure reading now because I can only stand for a 2 minutes or so, but about a year ago, I could stand for about 5 minutes and my blood pressure did go down when standing. I was going through a completely terrible time of very, very low blood pressure because I was lying still when I was lying down. My blood pressure would drop to about 75/45 during that time and i would feel like i was fainting even while lying. I
  13. Thank you so much for answering! I'm sorry, I didn't see these posts until now. I thought I checked the box that said "Notify Me of Posts", but I'm not sure what happened, so when I logged in and saw your responses, my heart was so warmed! Also, one other special person contacted me directly, so thank you so much to her, too. Mainly what happens when I stand up is that my body, mostly my right side, contracts so much (feel like blood vessels, muscles, nerves) that I don't think I'm getting blood to my head and I feel like my whole system--starting in my head and working its way down to
  14. Hello All! I'm wondering if this thread is still active and how everyone is doing. I, too, cannot seem to recover from being bedridden (1 1/2 years now). I can stand up for about 3 minutes max just to go to the bathroom (thankfully!) and then I crash. I have seen so many doctors and have had many tests and no one knows what's wrong with me. I feel it's a combination of Dysautonomia, Adrenal Fatigue, Extreme Adrenaline, Hormonal Problems, Panic Disorder, Migraine Headaches and Chronic Fatigue Syndrome. Yet, no doctors agree with me and will give me no help whatsoever and just tell m
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