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Everything posted by collies1974

  1. Hi There, Since my diagnosis 6 mos ago, I have not felt well enough to do much of anything. I am now feeling better, am back to work, and minimally functioning. I am grateful to be on Acebutolol for now... I am in such a need of a vacation, but fear that flying will set off my symptoms, and that if it does, then my destination city wont know a thing about POTS... How does flying affect POTS people? Thanks in advance. Tracey
  2. Hi Dana, In our blood there are certain tests to run, like ESR and CRP to check our body's state of inflammation (they are basically inflammation markers). If these are elevated, it shows that there is something causing a state of inflammation, whether it be autoimmune or infectious. Have them draw a CBC with a differential (the differential will show which blood cells,are elevated or reduced, because they are specific to cerain reactions, to hone in on the infection. For example, if the Eos (eosinophils) are elevated, you are having an allergic reaction, or allergy season.). Have ESR, CRP and RPR drawn, to check for systemic inflammation. Generic lyme's titer testing is not accurate!! You need a Lyme's Western Blot, to really have accurate results. Mono testing, is just a "Mono Panel." Also get a 24 hour urine, to check Metanepherines, to see if you are adrenal insufficient (no relation to infections, but all POTS patients should know this). A standard course of antibiotic therapy for a bladder infection is 14 days, not 7 days, especially in POTS patients, b/c we tend to be more susceptible to illnesses, b/c of our weakened states. After you complete the antibiotics, you definitely need a repeat urine culture, sensitivity and analysis to make sure the infection is gone!!! A lot of times, it feels gone, but it is not, especially if 14 days for a bladder infection is not done. I know, b/c this happened to me and I got pyelonephritis, which landd me in the hospital... This then brings me to the next issue, if you have back/flank pain once you finish the antibiotics, most elikely the first antibiotic was not the correct one, and the infection is back and worse. Please make sure they do a sensivity test on the urine. This will test they bacteria in the urine to see which antibiotic will be effective in killing the bacteria, thus making your treatment successful. As for me, I love antibiotics b/c I am normal without any POTS symptoms while I am on them, but about 2 days after I complete them, I get hit again with the BS of POTS! I hope this helps!! Feel better!
  3. I too am on the WAITING LIST for Mayo!! I call every week and they tell me that it looks like Oct-Nov, if that! I got on the list in April... I also applied to be a research candidate at Vanderbilt, but they also have a waiting list. What is this "Checker" status all about? Do you goto a specific pots dr's office? Where do you go? Good luck and don't lose hope, even though we all do, at some point. I have a great cardiologist in San Diego, who has 23 POTS patients, if you can travel and want great weather for a week, let me know, I'll get you an appt with him (I worked with him for years). The reason I want to go to Mayo, is for more thorough testing and a cause of my POTS. My dr is great with medications and hr control, and emails me back/forth so I don't have to get myself in to see him. Thanks for the help.
  4. This is exactly what happens to me!! Ever since I got diagnosed with POTS I have had multiple bladder and kidney infections, and have been treated with multiple antibiotics. When I am on the antibiotics, my heart rates are so normal and at times, so low, that I cant take the beta blockers... I am an ICU nurse, and know that certain antibiotics, like Cipro prolong the QT of our QRS complex on the EKG. This combined with our beta blockers (which does the same thing), reduces our heart rates... The longer, or more prolonged the QT, the slower the heart rate. I have spoken to my POTS cardiologist and he thinks that is the explanation as well. One antibiotic that really helps me is Cefdinir and another Macrobid. I then asked him if maybe these chronic, unexplained infections could be the cause of my POTS, and he said "Maybe, probably not." Beta blockers side effects also cause increased urinary frequency and sensation. To be sure I didn't have another underlying infection, other than the UTI's, he checked for Lyme's and Mono, both came back negative (I know it's crazy, but I wanted one, to be the cause of my POTS). If you look up the side effects of Cipro, Levaquin, Macrobid, Ceftin they all "Prolong QT complex." In lay mans terms, it basically slows the heart rate, especially when combined with a cardiac med for heart rate and bp control. Hope this helps, but if anyone else knows of another reason, please share. Tracey
  5. Wow, I am glad to hear that you are feeling better, but it took a long time. Thanks for the infor
  6. Thanks you guys. I spoke to a cardiologist friend of mine this morning, and he said that the top Electrophysiology docs and heart surgeons are now prescribing Vit D to patients, to possible help with arrhythmias (although not confirmed in literature). Healso said what you guys said, to help with fatique and generalized complaints of weakness and lethargy. He said that NYU's cardio teams all prescribe Vit D to their POTS patients, and have success with symptom management, again, no theory on how... Thanks for the replies. Tracey
  7. So, my Vit D 25hydroxy level came back severely low at 13 (norm 40-80). My cardiologist does not like this at all and prescribed the high dose Vit D 50,000 iu weekly for 8wks, then more vit d for 4 more weeks. I have read in several places that Vit D supplements helps POTS patients, but never on how... Does anyone know more about this? I am now going to see endrocrinologist to rule of hyperparathyroidism (crazy, but I am hoping that this may be the cause of my POTS!). Thanks in advance...
  8. Just wondering if peoples' POTS symptoms have gotten worse (progressed) since their original diagnosis, or have they stayed consistent. How long can these symptoms remain static? If my primary symptoms are postural tachycardia, brain fog, concentration problems, dizzy, headache and brain symptoms, will I eventually progress to the GI symptoms? I know each person is different, but is there a progressive trend with POTS? Anyone in NY or CA with a thorough dysautonomia specialist they would recommend? Thanks in advance
  9. Thank you everyone for the replies. I failed the tilt table test, but my dr said that although it looks like I have POTS, I don't meet 2 of the criteria. He wouldn't give me those criteria at all!!! He said that POTS can go away as quickly as it came, but I don't see this happening. How can you go from being healthy, to non-functional overnight and then expect to go back to normal after all this de-conditioning? I am feeling hopeless that I will have to learn to live with these ill feelings. All we all want, is a specific end date!!! Thanks again for the warm welcomes and well wishes. Back at ya!
  10. Beta blockers reduce the amount of reaction from your sympathetic nervous system, in response to the stressors and "Stress Hormones." They do not reduce the amount of stress hormones, just your bodies reaction to them. As we all know, the sympathetic nervous system can be stimulated by nicotine, caffeine, stress, allergies and other excitants... Beta blockers reduce the effects. If your definition of overwhelmed is that in a POTS sense, the propanolol is probably fine. If it is that you are mentally overwhelmed, I would opt for a xanax, if you are allowed (is it okay with your doc and your other meds). Take your HR before taking the propanolol. Only you know what you can handle. I think you need to nip the cause of your symptoms in the butt, not the symptoms, so that you can really, really feel better!! (ask doc if you can take a 1/2 of xanax). Call your doc and talk to triage nurse and demand a call back before the day is over, b/c you want a fix before the weekend hits. I don't want you to suffer anymore than you have to! I know a lot of people who take xanax 3times/day and are just fine. I however, notice that since I started Toprol XL, I am less anxious!! I am calmer, and more funtional. Celebrity singers often take beta blockers before performances, to reduce their tachycardias and sweating related to their stress! I hope the storm blows over quickly and you can only do, what you can do!! Let other people stress over it! You take it easy, and treat yourself to something good.
  11. Hey girl, You and I are on the same wavelength today. If the flagyl is a cream, then yes it is totally safe. It is also safe as a pill, but there are much less systemic (total body) effects and side effects if given locally (vaginal cream). I was recently on Bactrim, Cipro and a new antibiotic Cefdinir, all of which have cardiac side effects, and I did well, actually a lower HR on them. I am sure you told your doc about the POTS like issue you have... I wouldn't hesitate taking it, especially if it is a cream, b/c you don't want the infection to get out of control and cause more probs... The only reason they say to take it at night, is b/c you will be lying down, thus the medication wouldn't be leaking out... I would have done the same with the 1/2 dose that you did. Good luck, like you need this on top of everything else... Hey, I just noticed that you also wrote about the foggy head in Walmart.. I notice that when I have an infection, my POTS is out of control and my head is more off than ever. Maybe the extra head fog, is related to the infection. That would be great, b/c then you would be treating it!! Feel better.
  12. I get that way too and I unfortunately, let it turn to anger! I have figured out that there is a small window of opportunity of mental clarity for me in the evening, and I do stuff then. My doctor told me that the more I push it, the more used to it I will get and then I will develop a tolerance for it. He also mentioned that physical exercise is vital to POTS patients and that overtime, it will reduce the mental fog. I am hoping he is right, but I want an exact date and time frame (noone knows!). I forced my dumb, foggy headed self out yesterday for a 35min walk! I was spent and felt drunk once I got back home, but today, I feel less foggy? Mind over matter? I don't know, but I am going to force this illness out of me and health into me! I hope you feel better soon. Are you better at night also? The sun seems to screw with my eyes, and makes my head shift into fogginess real quick. I am much more functional at night. Could it be the sun, or b/c my fluid vol is up by the time night comes? My doc said it is probably a combo of both (safe answer). I hope this weekend is a good one for you. I can't even imagine having kids to care for. I am lucky, in a way, b/c I am single, with only immediate family, friends and a boyfriend; no real responsiblities, exept trying to get back to my insane job! Good luck, hope other people have an idea how to fix this dead head, foggy feeling...
  13. Thanks for the replies and encouragment! I am totally confused and I can't make sense of any of this. I failed my ENG today, indicating a vestibular disturbance, and am going to cardio tomorrow for tilt table test... Keeping my fingers crossed that maybe this POTS is related to the CSF leak, vestibular issue or something that might be treatable, but the more I research the less hopeful I become. Has anyone ever been able to find the right drugs, lifestyle changes that enabled them to ever work out or run again? Running is my release, and hope that I can get back to it. My HR standing and walking is the same as when I used to run at 6mph. The Toprol XL is taking the edge off big spikes in HR, but not getting it under total control. Any questions or tips I need to ask the cardiologist? I am lucky, b/c I have a cardiologist who specializes in electrical problems and has about 30 POTS patients and counting.... Thanks again for the welcomes and sharing.
  14. Endocrinologists are pretty helpful and great if you get a good one. He/she can check cortisol levels, sugar, thyroid and hormone levels in general. They are usually the scientists of the glandular and hormone issues people have. They can be very helpful with POTS if they know about it. If your POTS is related to adrenal dysfunction, then the endocrinologist and your primary POTS doc should talk, to maybe come up with or stick with your current regimen (if working/not). I would definitly bring up your POTS to this guy, it could only help. Just be sure to check with your primary doc, before you make any changes.... Good luck.
  15. Hi to All, I am so new to POTS and have my tilt table test this Weds. A little about me... I was a 35 y/o healthy female until I had an L4-5 epidural steroid injection, to help with a back injury I got at work. Within 24 hours of this injection, I began to have orthostatic tachycardia and a whole slew of postural symptoms that resembled a CSF leak. Every symptom disappeared when lying down. After 5 weeks of suffering, they finally did an epidural blood patch with some resolution of my symptoms, but not the postural dizziness or tachycardia. Now, it is 3 mos later and they are working me up for POTS. At first, my brain MRI showed enhanced cortical surface veins (indicating a probable CSF leak), now after the blood patch the MRI's, MRA, MRV are "Normal." So some of the doctors are saying continual slow leak vs POTS. I am only on Toprol XL at night. Supine HR 58, Sit HR 78, Stand HR 100-116, Walking totally varies from 92-120. I am exhausted, dizzy, frustrated and just "Off." Holter monitor shows only sinus tachycardia, no arrhythmias, and nocturnal hr down to 35! I am wondering if anyone knows of a connection b/t POTS and CSF leaks? There are so many articles and blogs out there that elude that my POTS may actually be a CSF leak, but the docs who did the injection and patch wont listen (go figure). I have an awesome dysautonomia cardiologist who does think there is a connection b/t the swelling in my spine and this tachycardia, but he needs to do the full POTS workup. Like most of the posts before me, I feel worse when the barometric pressure is down, my ears ring, throb and pop (neuro wants to rule out inner ear disturbance, can't this cause POTS too?), dizziness, dead head, lack of concentration and my back pain is back and I have been off from work since the day of the epidural!!! I give you all so much credit for your strength and positive attitudes. I hope that I can one day be as positive as you all. I am in the shock, disbelief and petrified state right now... Any replies totally appreciated.
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