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  2. I’m unfortunately on the opposite side...I’ve been on ivig for 7 years for a separate autoimmune illness, and it did not prevent the onset of pots nor has it improved my current pots symptoms. I think it’s really specific to the individual and what the underlying cause is.
  3. Today
  4. Pistol

    HR and Having Surgery

    I had several surgeries since being diagnosed with POTS and always the anesthesia department was well aware of the special considerations of POTS patients for anesthesia. I did have several surgeries where there were problems ( seizures, hypotension, hypertension, tachycardia …) but they were always able to get things under control. As long as they know about your POTS they should know what to expect.
  5. Not cured but improved. Greatly improved. It's not reported in the literature but it sure worked for me. It helped a lot of my problems.
  6. misseb

    Low Magnesium (Anybody?)

    Mine is low. Sadly I'm unable to tolerate any more than 200mg of magnesium a day despite being told I have to build up to 1200mg. Anymore than 200mg and I'm a stumbling fatigued Potsy mess the next day, and waking up is a real problem.
  7. toomanyproblems

    Just how dangerous is fainting?

    As I have said before on here I've passed out a lot over the years. IDK how dangerous it is for your brain but I wanted to comment that in my experience what you describe above has caused problems for me because of the leaning over. I remember last year when my daughter and her husband were home for Christmas and I leaned over in the kitchen to pick up some shoes or something, I stood up and passed out cold on the tile floor right in front of them. When I came to they were standing over me looking distressed. I said, just give me a minute. My daughter said, it's already been a few minutes. I assured her that it was okay, it happened all the time, got up eventually and went on my way. But I could tell they weren't very reassured since I live alone. But it is what it is so I deal the best I can and try to avoid hurting myself falling. I'm a PhD biochemist and have been in clinical and academic medicine my entire adult life (retired now). I've researched the blank out of this and the truth is, beyond the usual combination remedies that the docs give you to try, they really don't know much about it. So I just keep trying things and go on with my life as much as possible. For passing out, I've worked on identifying the triggers and beyond that, the cues once it starts and how to best deal with what happens. Your triggers may be specific to you, but I'm pretty sure from what you describe and since it's common, you, like me, get light headed from leaning over some times. If you have to do it, try to stay relaxed and breath. Learn how to do relaxed, deep yoga breathing. You can probably breath your way out of a lot of these near faints if your BP is high enough. Stay hydrated. Don't move too fast. I'm a quick mover with very quick reflexes. That's been a HUGE problem. I was very athletic in the past and every time I get to feeling the least bit better I start moving quickly again. If you do this, work hard to control it in trigger situations. Not sure you wanted advice but to add to the above here it is. I'm sorry you're going through this. It's really hard to handle the loss of control.
  8. Wondering. I wake up at night a lot and when I do my heart is racing. It is probably what wakes me up. If they put you to sleep for surgery what happens to you HR ? Im sure a lot of members had surgery with POTS they have them high heart rates at night. Was wondering if anyone might have thought about it or knows about it.
  9. dannyg

    Test today for Constipation

    GP is in on Tuesday and Im supposed to see him. If I can drive. Will try and make an appointment with the one the ER told me to go see.
  10. Pistol

    Just how dangerous is fainting?

    Dear @Derek1987 - I have fainted too many times to count and know how scary it can be. But except for the potential injuries you can aquire from falls syncope in itself is not dangerous. In the common faint ( which they used to call NCS ) there is rapid and complete recovery so - other than a little grogginess - there should not be any lingering effects. Syncope is caused by a temporary loss of blood flow to the brain and is not dangerous as in doing brain damage b/c it is such a short event. However - what LEADS to syncope can be dangerous, like asystole or arrhythmias. In NCS the cause is dysautonomia and is not life-threatening. But it can be controlled and improved in many cases. Have you tried counter-maneuvers? Orthostatic exercises? --- Unfortunately many of us have to live with the fainting and have to adjust our lives around the spells. And - as you are already doing - lie down when you feel it coming on so you don't fall and get hurt. This can be embarrassing - especially in a public place. When I was still able to go to stores I would only go to Walmart b/c I knew where all the benches and bathrooms were and strategically plan my shopping around the store's layout!!! Today I go in a wheel chair, so I no longer have to worry about that. And my husband does the check-out lane. --- I am sorry that you have to live with these episodes and I know how hard it is to live with the uncertainty of how this will all affect your future. But be positive - there is hope. If I - a pretty severe case - can get control over my symptoms so can you. -- BTW there is a great article on the main page under study results about physical counter maneuvers for NCS - that may be helpful for you. Best of luck!!!!!!
  11. @KingConnection - still doing great. Had a little flare from standing too much 10 days ago and had to be down for 2 days. I got my fluids earlier in the week to treat this and -- brand new!! All the symptoms went away and I could be active again. Still no episodes or syncope - nearing 4 months!!!
  12. Monday I had a near fainting spell at my wife's doctor appointment. 2 hours of sitting. Just a few minutes ago I put some clothes in the dryer. I was probably on my feet an hour or 2 today. So I put the last load in the dryer and start walking to the kitchen. Bam I feel the fainting coming on. I rushed to my bed. This terrifies me. Other than the dangers of hitting my head or something, how dangerous is fainting? It is so scary.
  13. KingConnection

    Improvement of POTS from IV fluid therapy

    Great thread @Pistol. I'd love an update if possible.
  14. MomtoGiuliana

    Test today for Constipation

    Do you have a general practitioner? If so they should be helping you to see a specialist asap if that is needed.
  15. MomtoGiuliana

    Low Magnesium (Anybody?)

    Mine has been low when in the ER a couple of times in the past, when I was in a bad POTS flare.
  16. potsiebarbie

    Heart skips a beat...

    You called it with the Magnesium! I'm in the ER and my Magnesium is severely low. About to receive some via iv. πŸ‘
  17. potsiebarbie

    Low Magnesium (Anybody?)

    This is probably my third ER visit in the past two weeks, and the first time they have decided to check my Magnesium which the doctor said is severely low. I'm about to get some via iv and he is making sure I follow up with nephrologist and endocrinologist. Me being the anxious wreck that I am, I am a wee bit concerned. Any ideas on what could cause it besides diet?
  18. I have the kind with ANS imbalance fight or flight I think πŸ˜• I have diastolic numbers always high when i stand up I am on norvasc and metoprolol for heart rate control.
  19. Yesterday
  20. dannyg

    Test today for Constipation

    Has me worried. Came home, can hear my intestine making noise, not sure if Im empty now or hungry. Affraid to eat. Ate very little today. Have to call for a Urologist and GI doctor tomorrow. I know Im going to get agrivated tomorrow trying to get an appointment "ASAP" like the ER doctor said to do. And I would be a new patient caue I never needed a Urologist. My GI doctor I cant get in until Feb. 12. Will be another day getting frustrated on the phone tomorrow trying to see doctors.
  21. Pistol

    Test today for Constipation

    I am not so sure that antibiotics affect your BP but any infection can. So - if you have an infection and you take antibiotics your BP may be affected due to the infection.
  22. ScottS

    Favorite way to have your coffee?

    Funny but I can't drink Coke (or pretty much anything caffeinated with that much sugar in it) but I do alright with my half decaf/half regular coffee with maybe a teaspoon of my homemade vanilla sugar syrup mixed in. So, plainly, it's the (excess of) sugar that sets my system off and not the caffeine.
  23. CarolS

    Any test recommendations?

    Not sure what country you're in, but if possible, it would be best to try to get to an autonomic specialist. Someone who has a thorough understanding of what's going on with you.
  24. JP0324

    Any test recommendations?

    I do not feel any better! I require lots of breaks to sit down/lay down. I am often still short of breath and dizzy.
  25. MeganMN

    Dizziness Remains.....

    @Stark thanks! I am in Minnesota and have thought about Mayo but my insurance is pretty wimpy. I was going to call and see what if anything they would cover out of network. It is only about 4 hours from me. Hard to figure out logistics with a 3,5, and 7 year old! Family vacation to the doctor? HAaha. Looking into it though. Up to this point, everyone (including me) thought the symptoms might resolve but here I am...... πŸ˜‰
  26. dannyg

    Test today for Constipation

    Do Antibiotics affect BP ? Been taking Amoxicilian for 4 days and it seems my BP been running low. I got up toxay though and it was 130/115, then an hour later its been staying around 112/75.
  27. @Outaker - if you seriously want to apply for SSDI contact your local SSI office, they will help you with the application. It is a long and involved process. They send you a detailed questionnaire about what you can and cannot do etc and they get all of your records from all doctors for their review. Most likely you will be denied several times.. The last step is a hearing with an administrative law judge who will decide whether or not you get it. It takes most people about 2 years. Good luck!!!!
  28. Stark

    Dizziness Remains.....

    Hi Megan, I assume you are from MN. Have you tried to be seen at Mayo clinic in Rochester? I hear they have good POTS doctors
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