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Everything posted by ANCY

  1. I pass out several times a day, have for quite some time. My cardiologist gets VERY concerned if I'm out longer than 10 minutes because by that time you are KILLING brain cells! Please go to the ER when this is happening!!! Are you alone when this is happening? Have you sought any medical attention with the loss of consciousness?
  2. I had high dose steroid infusions which I reacted negatively too. Brought on New symptoms and made other symptoms worse but it helped with my heart rate and blood pressure making it more stable. We are unclear on weather this was an "allergy", infusion reaction, or just my body being shocked by the amount. I have had two 5 day courses of ivig which helped me tremeandesly across the board with all autonomic symptoms. Was truly amazing to both my drs, family, and myself how much I responded, we had only seen decline for many many months. The benefits lasted me for about 3 months and during that time I made vast improvements. I did however have a very difficult time tolerating the infusions. I get aseptic meningitis (that's what my Neuro said, he sees it with many of his high dose ivig patients.) Also have pretty high blood pressure for the 5 days and then tapers off over the next 2 days, along with the meningitis symptoms. To me the benefit, being able to do more than just survive, outweighed the week of pain. Recently saw an imunologist who believes that my reaction may be related to my IgA deficiency so she's running more tests. She wants to be sure it's safe for me to have future ivig treatments first, then see if there is anything she finds that we can use to convince insurance of the necessity of treatment. My neurologist who ordered it the last 2 times has tried to appeal but denied because it's not a "proven" treatment.
  3. I have a pacemaker, life changing for me. I went from passing out 20+ times a day to not at all for 6 months. Due to complications from gastroperesis, infections, osteomyolitis I have had a very tough time trying to stay hydrated etc. We are hopeful, and Cardio expects, that once we get passed these issues and the deconditioning that has set in that I will get back to where I was post pacemaker placement. Please feel free to ask me any questions or PM me if you like. Hope you soon find what works for you!
  4. I deal with this most days, for me that's my better days. Range from 60/30-140/90 normally and a lot of days get up to 160/110. We are not able to do a whole lot treatment wise as I pass out several times a day because of low blood pressure drops and we don't want to push those any lower. It is really a big balancing act sometimes lol! I am 26 and was declared disabled at 20. Use florinef (0.1cmg 2 x a day) and midodrine (10-20 mg 5 x a day) and have used clonidine to try and bring some of the highs down but seem to be reacting to it... Recording a log of BPs and bringing it in to my dr has been very helpful in the past. Periodically they'll have me do that so we can establish a sort of "baseline" to go off of.
  5. The only way of knowing for sure what your blood oxygen level is with Arterial Blood Gasses, obviously that can't be done 24/7 so gives a very narrow picture. I was placed on oxygen for 2 years because doctors witnessed periods where my oxygen would drop down in the 70s but I never stayed there for longer than 5 minutes. When we finally got to a pulmonologist he said that what we were seeing was likely just from my unpredictable blood pressure causing inadequate profusion. However he did say that what we saw overnight was likely real as I have sleep apnea. Sleep apnea can also affect daytime O2 levels.
  6. That's horrifying! I hardly ever am not with one of my family members. I don't venture out much beyond Drs and church though. At church I have some friends who are more familiar with my passing out and if they feel there's an issue they have either brought me to my family (I use a wheelchair and it's adapted so I don't fall out when I'm unconscious) or bring one of them to me. Only place I pass out alone is when I'm home by myself. Thankfully my service dog stays by my side at home and will give me enough warning to get into a position that will not cause an injury.
  7. I have trouble with it randomly dropping my potassium but have learned to recognise the signs and get it taken care of. Have the most trouble when I have a cold or flu. My Drs check my labs about every 1-2 months but that's more because I'm on tube feeds.
  8. No, the ICU dr was the one who ordered it and I had a horrible experience with the attending cardiologist during that hospital stay and he certainly wasn't going to write for anything... I hadn't given much though to having it outpatient, I may bring it up with my cardiologist. Currently getting iv fluids twice a week and they are helping so not sure he'd want to add another thing. Please update of you figure something out and if it works?
  9. About 2 Years ago I was in ICU because my blood pressure just wouldn't come up. (They had me upside down and my bp still wouldn't go any higher than 70/40.) They had me on dopamine and neosynephrine without good enough results so The ICU Dr put me on albumin and within a couple hours I was stable and moved to the cardiac floor. He wasn't sure it would work but it sure did! The first thing they did in the ER was fluids, have me 3.5 liters with no change.
  10. So sorry to hear of your situation and their dismissing your symptoms. I hope that once you get a hold of your raw TTT data you can find a Dr who will take you seriously. I also started using a wheelchair because of syncope/pre-syncope symptoms. Years later I am now also dealing with weakness and deconditioning from using the chair. Deconditioning is a big problem and certainly doesn't help POTS or Dysautonomias. Just want to encourage you to do as much moving/exercising as you can so you don't have to contend with extra problems of deconditioning as I have. I hope you are able to find someone soon who will take you seriously!
  11. I have frequent trouble with hypovolemia and find that the biggest help for me is saline infusions. I have severe gastroparesis and gi dys motility and we question my absorption, we believe that to be part of the reason I cannot truly rehydrate orally or via feeding tube. Are you getting enough salt? Sodium is esential for the body to be able to retain fluids. Hope you get some answers from all that blood work!
  12. Thanks, we are discussing options. Its less urgent now as my BP has steadily been dropping and avg around 80/50 now. Something we thought was unrelated was my allergies which have been going haywire but that has calmed down as well so thinking the two may be related. We have yet to identify what I was reacting to however we believe it is environmental not pharmaceutical as I haven't started anything new. I'm allergic to pollen, grass, horses and cats that we know, not sure exactly how I've been exposed though as I haven't spent any time outside recently. Its a bit of a puzzle lol! As for the florinef and clonidine that's because clonidine is short acting and has been successful for months treating my random infrequent highs. When I started it I had been managing at a stable dose of midodrine and florinef and we believed the bp highs were related to uncontrolled pain.
  13. I've used midodrine for a long time, currently at 10-20 mg 5 x a day, according to my blood pressure. For me it absolutely got better over time and no longer get this side effect. Ive used it at varying doses over the last 5 and a half years.
  14. Glad to hear you can make another visit, I hope it's helpful. Such a big decision to make I pray God gives you wisdom. You are certainly correct that each person is a unique case and sometimes what is regarded as problem ends up being a solution. I've watched/listened to Dr Grubbs before, glad you have been able to see him. We tried to travel out to see him once but insurance denied it. Interested what his take will be on this.
  15. Thanks for your input. I have not yet heard back from my cardio in regards to my bp. Going to try them again today. I am not sure it's the florinef alone, I've been on it for years, and an even higher dose of florinef before and right now I'm still having lows. I do not take the midodrine when my bp is high. Trouble is that I'm dropping so drastically and low enough that I HAVE to treat. (50-60s/30-40s) I do have a lot of leway in regards to meds, otherwise I'd be calling them every other day. The unusual part is that I'm going so high.
  16. I get that, is there a way you could take another trip to be more sure that it wasn't coincidental? With starting a new medication I'm sure it's hard to be sure. I definitely value the weather here, only a couple weeks of the summer that are a problem. Better than it used to be as we moved outside of town and another almost 2,000 ft in elevation. It's amazing how different the weather can be in just a matter of a few miles. Southern Colorado Springs/Fountain tends to be warmer than the North end. If you do move here feel free to PM me and I'll let you know about some of the Drs in the area.
  17. I don't know of one device that has ALL those functions. I use a polar watch with chest strap heart monitor. My cardiologist has always been happy with it and uses the data from it to help with decisions. To include deciding to place a pacemaker, said that it was as accurate as any other device they would have tried to use. Don't bother much with meticulously going through the data anymore as my cardio can see the pacemaker info. I use an Omron BP cuff that was also recommended to me by cardiologist. Pulse ox can be very unreliable when your blood pressure is low. A pulmonologist explained to me that without adequate profusion the pulseox can't measure properly. Just thought I'd share... Hope you find what you are looking for.
  18. Thanks p8d for sharing. We did go up on my florinf a couple weeks ago, maybe its hitting late. My cardio also didn't seem worried about 160s/110 but did have me start the clonidine to try and alleviate the headaches associated with it. Aim to talk with cardio tomorrow I might just go ahead and ask about the methyldopa. Today has been kind of weird, started with 163/113 and then dropped to 62/40. I think the drastic swings bother me the most, also makes it hard to treat either of them. Apprehensive about taking the midodrine or clonidine... Eventually did take the midodrine but only got it up to 79/37.
  19. What about constipation? Do you have any other motility problems besides the gastroperesis?
  20. Thanks so much for explaining all that. I know a lot more about low blood pressure than high lol! I'm sorry you've had to deal with the swings, glad you figured it out. I'm going to get in touch with my cardiologist Monday and ask them about trying something different. Today I tried not taking the clonidine after I got to 163/119 and my blood pressure came down slightly on its own. We are starting to really think that the clonidine is somehow pushing it uoghrr or at the very least a medication is affecting my bp. Obviously keeping a close eye on things and we'll go to the ER if we get to that point before Monday.
  21. The last couple days I have had a drastic change in blood pressure, "normal" for me is swinging between 50s/20s to 110s/80s with occasional excursions to 150s/100s. The last few days I've been between 135/103 to 173/125, mostly staying at the high end of that. Trouble is we can't seem to identify a cause and it seems that the clonidine is becoming less effective or maybe even raising it. We think there may be a possibility it's the Levaquin and doxycycline I'm on, but I've been on them for months and we haven't changed them. On Thursday morning it sure seemed like an allergy thing because my face was flushed and itchy and having hay fever kind of symptoms going on so I took benadryl in addition to the clonidine. Helped with the itchiness and puffy watery eyes but blood pressure remained high. We came close to going to the ER last night but my blood pressure came down to 140/106 so we decided to at least put it off till morning and reevaluate. I am having headaches, pounding in my head, ringing in my ears, and feeling weak as a result of the blood pressure. Has anyone had such a drastic change spontaneously? How long did it last? What did you do about it? Thanks so much for reading and replying!
  22. Hi! I live about 30 minutes outside of Colorado Springs and around 2 hours from Pikes Peak. I find the altitude complicates things for me, the one time we went to sea level I had a marked improvement in symptoms and was able to do more. I had a friend who lived in Colorado and was so convinced the altitude was her main issue that she moved to sea level on the East coast. Sadly she didn't improve at all and it was all for nothing. Pretty amazing that you did better here, is it possible the difference is milder summer/lack of humidity? We know for me if we moved we'd be trading one problem for another as heat is my nemesis, I have horrible temp regulation issues.
  23. I am sorry to hear of your troubles. I pass out frequently, almost everyday and shortness of breath happens almost every time. I also get shortness of breath when I get extremely tachycardic, to the severity you describe.
  24. I also get daily headaches from midodrine. For me the symptoms that it helps me control are Worse than a headache so I choose to continue with the medication. It is nice knowing what's the culprit. I get Worse headaches if my bp is up over 155/110 and also get migraines frequently, we are not sure what causes them at this point. Consulting your Dr about trying different doses, halfing it ECT, may not be a bad idea. It can be a process trying to find what works for you as symptoms management is very individual.
  25. First off let me say yogini is right, pacemaker will not fix dehydration problems. For me it does help with symptom management in general, including when I'm dehydrated, but dehydration is certainly not a reason to get a pacemaker. I got my pacemaker because following a concussion I developed progressively worsening bradycardia. We watched and waited for a month and things just continued to decline until my heart rate was in the 20s. My cardio later told me that he was afraid I was going to die the day he placed my pacemaker. They had defibrillator pads on me in the ER and were moments away from pacing me externally when they whisked me away to get the pacemaker. So the indication for my pacemaker was purely bradycardia, which cardio said was my dysautonomia changing, but since he was placing one he went ahead and placed a biotronik with closed loop system that works to maintain cardiac output. So when bp causes a decrease in output it will pace the heart faster to compensate. Here's the post about the month leading up to my pacemaker placement if you want more detail: Pacemaker has made a huge difference in my life, I went for 6 months without passing out. What freedom! We didn't have to worry every minute about how the position im in if it's going to be injourous if I pass out. Which you can probably relate to... I don't always have much warning when I pass out. I have gastroperesis and a feeding tube which long story short led to an inability to stay hydrated, had a picc placed for hydration, then got meningitis and sepsis. Also had a hernia that was interfering with gut function which they repaired in January, 3 days after that surgery I got sepsis again and then developed osteomylitis on L4-L5. Only now starting to recover from that but due to complications from treatment for the osteo continue to struggle with hydration. So with all of the other things going on I am having bp troubles which keep me passing out almost daily. Not to mention the deconditioning brought on by dealing with back pain complicating things. My cardiologist saw me last week and is hopeful that, with a lot of work to overcome the deconditioning, I could be "more normal" or have a more normal life in 3 yrs or so. Barring complications lol! Pacemaker is still helpful though and without it I know I'd be passing out a lot more. (I can feel it when it's ramping my Hr up, happens many times a day.) At which time it will typically relieve some or all of the presyncope symptoms. I will pass out when my bp drops lower or faster than it's able to compensate for, at least that's what I've observed. An added bonus is that my Dr knows a lot about my Hr and any kind of rhythm problem I may have within 48 hrs. I hope this helps and please feel free to PM me if you want.
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