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About Julyrose

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  1. thanks! I have a running note going of things to ask/see if i can try. I feel so much more hopeful when I am in a state of action. It may work out, and it may not, but it feels good to fight!
  2. So I saw my rhumatologist today for follow up. My Lupus is clearly flaring, so I got 125mg steroids by IV. My bp is already up from it. My resting heartrate is higher, but I feel better. When you have POTS in addition to other chronic illnesses, It can be very hard to suss out what is flaring what. If I feel radically better in a few days, then this time, we can assume the Lupus was flaring the POTS. I loathe steroids, and have some complications with the intracranial hypertension when my BP is elevated from them, but as it is short term, my doctors just moniter it closely. Thank you all again.
  3. That sounds horrible Pistol! I'm so sorry! I notice a huge change in my orthostatic symptoms depending on how my shunt is functioning (it is supposed to divert CSF to my abdomen if the pressure in my head exceeds a set point). When my shunt is over draining, I get WAY more POTSy, i theorize because of the excess plazma volume needed to keep up with increased CSF production, makes me more dehydrated. When it is under draining and my pressure is too high, my numbers are better, but I feel worse in general because the high pressure gives me terrible extra fatigue and nausea. I am going to see my eye specialist who manages my care for that this week to see if a shunt problem is causing this flare up (though I desperately hope not, as that would mean another brain surgery, minor though it is, still a set back for recovery). On top of this, I was diagnosed with Lupus early this year. All of my conditions can cause/exasserbate the POTS. It is increadibly hard to ballance. Of all my issues though, POTS is by far the most debilitating and has the highest negative impact on my life. The fact that it is so common, and yet so few people know about it, let alone understand the devistation it can cause, is outrageous. You are all amazingly strong. Thank you for your kindness. Most doctors are overwhelmed by me. But isolation can cause even more suffering than this disorder in and of itself. You help me feel community.
  4. its not hypertension in my head, it is increased CFS production, or impaired absorption
  5. I feel off today, like I'm fighting off a bug, but nothing definitive. I was so POTSy today though that after I ate some soup for lunch, I had to crawl from place to place in the house. Horrible postprandial hypotension. I just can't risk fainting again and getting more hurt. Hubby home in an hour or so. Counting down the minutes...
  6. My word! Thank you all so much for the responses! This is clearly a wonderful community. I have had a few holter moniters actually. Heartrate averaged 111 with max at 153 I believe for the only one I remember the results of. I am not on medicine for the POTS. I have idiopathic intracranial hypertension, so the meds that boost blood volume are contraindicated, and moderate asthma so no beta blockers. I am scheduled to see a cardiologist in a few weeks and am willing to try something new. I have been drinking salted, diluted gatorade all day and felt a little better, also I was able to rest while my daughter was in preschool. This evening, my throat is becoming increasingly sore and I feel like I'm coming down with something. Maybe my body was trying to fight off whatever bug this is? Or, I'm so overdone from the heartrate stupidness that I'm run down and niw sick. Either way, my husband will be home saturday and I feel much more prepared to get through till then. I'll update tomorrow. Really and truly, thank you all. I was feeling so isolated and afraid. Your understanding gives me strength.
  7. All close family are out of town, and two best friends are sick and have littles of their own. Its just bad timing. I guess if worst comes to worst, I'll just have to bring my daughter with me back to the ER. I really really hope it calms down or I can gimp along till hubby is home.
  8. Thank you for replying so swiftly and kindly. I have a 3 year old to look after, and my husband is out of town for work this week. This is terrible timing.
  9. I have POTS and EDS and other things. I'm 28. I have been dealing with this for many many years, but I have never felt so bad. I am not dehydrated. I am having lots of salt and hydration fluids. I am not anemic. I have been doing physical therapy to help tone and improve my myscle pump for two months. I simply cannot get a hold of my heartrate. I am fainting multiple times a week. I feel as though I have run a marathon to try and brush my teeth, or put on pants. I went to the ER Friday after fainting in the bathroom, falling on the side of the tub, badly bruising my ribs, and dislocating my right shoulder. My heart rate was 130 laying down, 180 sitting up. It calmed down with IV fluids, though my labs did not indicate any dehydration. Since then, I have recorded my heart rate as high as 217, and low as 42. It still seems very orthostatic, just far more eratic than its ever been. Please help! Is this just a flare? My GP is out of ideas. I am seeing a new cardiologist mid march, but have been evaluated by them repetedly in the past. My heart seems fine, and the heart beat is normal, just too fast or too slow.
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