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McBlonde

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Everything posted by McBlonde

  1. Wow. Welcome! Your PCP was right about one thing. since "She is convinced no conditions exist affecting nervous and vascular systems and keeps trying to say there is nothing she can do for me" The last thing you need is a primary care doctor that is "disbelieving".... You deserve so much better! If she is not going try, she is not worth your time, energy or money. Where are you located or how far can you travel? That would be helpful for us to help you. So sorry you are going through this!
  2. Christy.... that is SO interesting to hear that it came from a doctor (Mayo no less)! It's not just in my head!
  3. Hippychic .. this weather we have been having in the DFW area the last 3 weeks has really made me feel bad. I wonder, as you start driving, the closer you get to home the more back to your "normal" POTS self you will feel?
  4. It's 9 hours from me, and for the 1st 6 hours, I felt so horrible all I could do was try to meditate to get through it. However, the closer I got to the coast, the better I felt. It was so weird, but after about 6 hours of driving South, all of a sudden I raised my seat and noticed I didn't feel as bad. I felt so much better the whole time we were there. I felt good as we started back, but the closer we got to home, the stronger my symptoms because. I find this crazy and I have tried and tried to come up with some logical explanation. My husband said maybe it's the salt water in the air acting like a saline IV does. lol! There has to be some objective thing that happens to my body there because that's 3 years in a row that it's happened. I just don't know. It's now like Fl is any cooler or less humid than Louisiana, lol, so that's not it. Is there something that being at sea level would do to your body? Interestingly, in theory, it would seem that San Diego would make me feel better for the same reason (whatever the reason is) but it didn't even though the weather is stable and cooler there. It drives me crazy not being able to figure this out!
  5. NMPotsie.... Great job explaining. I get the NE dumps, too. Maybe mine changed from BP of 80/60 normal with drops in BP on standing to NE dumps with some hypertention & BP surges up or drops down because I am salt loading and drinking the large amounts of fluid? For me, one thing that has never changed even with Florinef and lots of salt and fluids recommended are the orthostatic drops or surges in BP.... Is it possible that it's your propranolol that is stabilizing the drops and surges of BP?
  6. That is so interesting about the high C02 levels, Firewatcher! I've never heard that before and my C02 levels have been consistently high.
  7. Hmmm... Mine don't burn. Mine are dry. Mine's an endocrine issue. I have the antibodies for Graves Disease.
  8. So sorry that you are having one of those days!! I can totally relate. Sending a hug from me and hoping tomorrow will be a better day for you!!!! xoxoxoxo
  9. So interesting.... about the rebound. I bet that's a possibility with all these drugs they try to treat our symptoms with.... So with the total dysfunction, how do they ever balance it out so you don't have rebound?
  10. I had a failure of my pituitary with low growth hormone, pre-mature menopause, hypothyroid and low aldosterone and renin... My endo keeps reminding me that you can stimulate your pituitary and it could works correctly, but in order for your body to work right, it has to get the message from your autonomic system.... 'Soon-to-be-published research (Friedman, T., et al., in preparation) shows a few patterns of abnormalities in the renin-aldosterone axis. A little more than half the patients with fatigue had low blood levels of both renin and aldosterone. This is called hyporeninemic hypoaldosteronism and is probably due to dysfunction of what is called the autonomic nervous system, which sends messages from the brain to the kidneys. Other aspects of the autonomic nervous system have been found to be deficient in chronic fatigue syndrome. Here is a paper he gives to his patients about autonomic disorder...cortisol, aldosterone etc. if you haven't read it. http://03342db.netsolhost.com/page/the_importance_of_the_adrenal_cortex_hormones_cortisol_and_aldosterone.php
  11. Thanks for all the responses everyone!! When I woke up this AM, the first thing I did was to check my BP & HR "just to see"... It was 136/89 with a HR of 95 when I woke up. The highest it got was 150/94 and in between times it was 98/80, 108/71,123/84, 135/82 and now tonight it's 126/82 with a HR of 87. I have been very Blessed today not to have one of the BP headaches and I am so thankful for that. When I get up, it either drops 50 points or goes up 40 points & that seems to be what triggers the headaches. I have been taking the Florinef since 2003 to raise my BP (but still "drinking like a fish & peeing like a racehorse" as the saying goes) so since I have had these high numbers and since I was peeing out the fluid as fast as I drank it, I stopped the Florinef the last 2 days. I cut my G2 down to 3 and eliminated my V8 with salt & increase just plain water. But, I have no idea it that's the right or wrong things to do. If I wasn't having the headaches from the surges & drops, I wouldn't worry about it, but those headaches stop me in my tracks. My doctor wants me to take Wellbutrin or Clonidine. He said the Clonidine would lower my NE at night and therefore my BP & HR. I fear the fatigue & blues happening again. It's so hard to know what to do!
  12. That's a great guess!! But.... I've been on Florinef since 2003...same dose of 1 mg.. Isn't that crazy!
  13. Rich.... This was hard to answer since I now have developed high BP (lying and stand) alternatively with hypotension (lying and stand)...... With both the hyper and the hypo I have big drops & raises of 40 to 50 points. I have no idea why this is now happening after all these years.....
  14. So sorry!! If only it were "just anxiety", right?! What I find so distressing also, is the energy it takes to actually go to the doctor's appointment only to feel like your time was wasted! So often I say to my husband, I have to wait until "I feel better before I can go to the doctor"...... and then when you get there and it's a wasted trip, it is just disheartening!
  15. I am so happy for you!!! That's great news! Take it easy going back to work! Try not to over do!! It's really good to hear when someone has a good spell. Thanks for sharing!
  16. No, it wasn't a blood gas ouch! I'll have to look up the range, but it was something like the high range was 40 and my lab result was 55.
  17. Wow, NMPotsie! I've had these left sided headaches for 2 years now! Did Dr. Goodman try to give you anything that would stabilize your BP?
  18. The bad thing is that ANY kind of stress can make POTS worse, good stress, bad stress, emotional, physical, ....because of our body's physical over reaction.. You have had a lot going on plus, the hot weather and the higher sea level would have done me in! I don't think it's the Klonopin.
  19. I get the sensation that I can't take a deep enough breath. If I take Mididrone, that sensation goes away.. Also, I find myself holding my breath and not even knowing it. When they do my blood work, my CO2 is always very high.
  20. No... I haven't changed anything.... I've been doing that regime of G2, V8, H20 & compression pants since. February. Two days ago, after I couldn't get my BP down, I switched to just water and stopped the Florinef, but none of that lowered my BP. I've been afraid the clonidine would make me feel fatigued and that incredibly awful depression like the Bystolic did
  21. Issie!! That reminds me! (See, my thoughts are fragmented and I just don't think clearly) Yes, my NE was 700 resting and higher standing....can't remember the exact number this second. An the edema you mentioned!! Here I am on a mission trying to get my BP up to 110 systollically ... so drinking 8 bottles of G2 a day with the V8 + salt. with the compression pants...... When I took my sock off yesterday on my right leg, there was a deep indention where the top of the sock was and it was BLUE. It took 24 hours to "spring" back out. I can still see the mark though. But what changes a personally suddenly from a low BP all the time to high BP? That's not POTS, right?
  22. I am so confused. Just as I think I have something figured out, the symptoms change for no apparent reason. I just don't understand. I have had low BP all of my life. The 1st time I fainted, I was 3 years old. I fainted twice that year. 80/60 was normal for me. Through the years, I fainted off and on. If I "stood up too fast" I would almost black out. I've had orthostatic hypotension as long as I can remember. Still, I lived a pretty normal life. Fainting (as it turns out) was actually better than this life. In 2003, when I got really sick with severe fatigue, I saw an endocrinologist & he did a test where he had me lie down for 15 minutes and then stand for 15 minutes. I remember that after I few minutes of standing, I felt so sick. At the time, I had no idea I had any problem with standing. He tested my aldosterone & renin lying and standing. When standing, my aldosterone & renin were both low instead of one going up when the other goes down. Also, when standing, my heart rate when very high and my bp bottomed out...... THAT was my pattern. Last week, after all these years, for no apparent reason, I wake up with a bad headache and check my BP and it's 140/90 with a HR of 116... This afternoon it's 145/92 with a HR of 74 all while resting. If I get up, I have a 30 point drop in BP before it spikes back up. It makes my head hurt on the left side so bad. How is this even possible? How can I change from being a person who always had low BP to this? I feel beside myself with frustration because I don't understand and am not sure what to do. I do have a prescription for Clonidine which I haven't gotten filled yet (because, silly me! I thought my BP was too low to take Clonidine) I thought with POTS, your BP was not affected, yet mine now seems out of control!? Any thoughts? Thanks for any input.
  23. HippyChic... I think I said this before, but then again I may have only thought it and not had the energy to type it. I am 2 hours from Dallas and my symptoms are really bad here. I went down to the Gulf in Florida. When I left the house, I felt SO bad I thought within the 1st hour that "I can't do this" I can't make it!" By 6 hours further south, I felt like a different person. I could sit up in the car and converse. After a week in Florida, I was SO much better! BUT.... as we came home... the further we got away from the coast of Florida, the worse I felt and I have not recovered since I got home. It's SO confusing. What is it here that triggers me, but not in FL? I think we even had a thread a long time ago about barometric pressure, humidity, sea level, etc. Imapumpkin..... I don't have the answers for you as to why, (in my case it's not just the heat) but it had been a couple of years since I was in FL and yet when I went there again, I still felt better, so my guess is it's not anything permanent. I think your body will feel better when you go back to where you felt better. I even tried San Diego because it's so consistent...... but I didn't get the relief there, not like Florida. Still in the La TX area, I a way worse. Can anybody think of a logical explanation?
  24. Which one is the "upbeat hormone"? I need more of that one! Edited to add what I meant to post! I hadn't taken any medicine this AM and took my HR. It was 110 resting for some crazy reason. I took only 2.5 mg of Midodrine and now my HR is 81 and my BP is 114/84..
  25. Mine is usually 60 to 80 resting. This AM for no rhymn or reason it's 110. This disease is crazy!
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