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Everything posted by Krissy21

  1. I obviously can't say for sure that Gardasil doesn't cause POTS but I highly doubt it does. I think it's the timing of the age when the shot is given and the age of onset of POTS. Take the MMR shot for example. Some people believe that it causes autism. The first MMR is given at when a child is 12-15 months old which happens to be the age when autism is first noticed/diagnosed in children. The Gardasil shot is mostly given to women in their teens and early twenties. Like afpayne said, 80% of POTS patients are women and their symptoms begin in their teens/twenties. Like the MMR, it could just be coincidence that the symptoms are beginng to show at the same age the vaccine is given.
  2. Yeah it's possible for her to have both. I was diagnosed with both POTS and NCS because during my tilt table test, my hr went from 68 laying and 116 upright. It stayed around 115-120 for 10 min then immediately dropped to the 40's. My BP also went from 100/70 to 84/48 when my hr dropped. The increased rate bought me a POTS diagnosis and the rapid drop of hr and bp means NCS.
  3. I'm with E Soskis, please get the flu vaccine unless you are unable to for medical/religious reasons! We are also already seeing kiddos with influenza at the hospital where I work. Yes the flu shot is linked to Guillian-barre syndrome but it is a very very rare side effect. Less than 4000 people in the US get this every year from all causes (most vaccines, respiratory and GI infections, etc). You are also very unlikely to die from Guillian-Barre. I'm not trying to downplay it, GBS is a terrible and scary disease, but the flu can be too. Especially in people like us with chronic health problems. The flu kills an average of over 23,000 people in the US every year and many more people get it and are hospitalized with complications. Sorry my nurse rant is over, I just want people to be educated about the flu shot and not be afraid to get it if they are able. http://www.cdc.gov/flu/protect/vaccine/guillainbarre.htm
  4. Was this bicarbonate level from venous blood or arterial blood? The best way to tell if someone is in acidosis (too much acid in the blood) or alkalosis (too much base in the blood) is by having your arterial blood gases checked. This is usually done by drawing blood from your radial artery in your wrist. You can only know if it is metabolic acidosis if you have all the blood gases checked (pH, bicarbonate, CO2, and O2). CO2 is an acid where bicarbonate is a base. Metabolic alkalosis does not cause shortness of breath. Patients with metabolic alkalosis can eventually breath very slow to try and hold on to CO2 which will raise the acidity of their blood. If they get to this point, they are very sick, usually unconscious. They're bicarb level would be much higher than 32 (normal range is 22-28 so yours is only slightly elevated). Since florinef can cause low potassium and low potassium can cause metabolic alkalosis, it is possible you do have it. But it shouldn't be causing your shortness of breath.
  5. Mike, I think you are describing the hemodynamics test. I had them both done at the clinic and they did the hemodynamics test right after the blood volume test in the same room. For the blood volume test you lay down on a table. They start an IV and inject a radioactive tracer. Then they draw blood samples from the IV at different time intervals. It's pretty easy. The only bad part for me was getting the IV in but I am a hard stick so it took multiple tries.
  6. My POTS doesn't seem to correlate with my period either. It's not any better or worse at that time of the month both when I didn't take the pill and now. So from a hormonal standpoint, the birth control doesn't help. It does help as far as blood loss goes. Tmi warning- before I started the pill, I was losing way too much blood evey month. Like going through a whole tampon or pad every hour for 3 days straight. I was anemic and it probably wasn't helping the low blood volume situation. The pill I take has pretty much stopped my periods all together and I feel better that way.
  7. Yeah feel free to PM me with any questions you have. The blood volume and hemodynamics tests are easy in that all you have to do is lay there. They were done in the same room one right after the other. For the blood volume part, they start an IV and inject you with a radioactive tracer. Then they draw blood at different time intervals. It was unpleasant for me because it is hard to start an IV on me especially when dehydrated from fasting. When they finally did get the IV started, it wasn't a very good one so they had to keep adjusting it and pressing down on it every time they drew anothef vial of blood. They take quite a bit, I stopped counting after 20 vials. For the hemodynamics test, they inject a different radioactive tracer in your IV multiple times. I can't remember how many, maybe 5 injections? They take different sets of images with a gamma camera to see how your blood flows through your body and if you have any pooling. This was unpleasant because they have to inject the tracer quickly and I could feel it from my IV inside my elbow up my arm to my shoulder. Not really painful, just uncomfortable. Let me know if you have any other questions. Don't worry too much, all the tests are bearable, just not very much fun.
  8. Yeah I understand what you're saying. My symptoms are worse if I am anxious. But also, like you said, I get them when I'm not in an anxious situation. For example, before taking a beta blocker, my heart rate would shoot up just from rolling over in bed. When I took propranolol I had to take it 3-4 times a day. It would wear off after about six hours. The atenolol lasts a little longer so I only need it every 12 hrs. I hope you find out what works for you and get some relief from the beta blocker.
  9. I currently take 25mg of atenolol twice a day 12 hours apart. This helps tremendously with my symptoms. I really can't function much without it because my heart rate gets so high, I get short of breath and have chest pains even while sitting. I have both POTS and inappropriate sinus tach. It does lower my blood pressure so I drink at least a liter of Gatorade everyday to help raise it. I tried several other beta blockers at different doses and some did not work at all while others worked but caused too much fatigue and other side effects. You could always try the propranolol and taper off it if it doesn't work or causes bad side effects. You may need to give it some time though, try different dosages/number of times you take it per day, or try out different beta blockers to find what helps you the most.
  10. If it were me, I would start with the local cardiologist. See what he knows and if he can help you. You could at least do the tilt table test since they have one. If he can't help you then I would consider traveling to someone who specializes in POTS.
  11. Like lulusoccer said, I'd recommend going to different places in your community to see how much they cost/what they offer. My community has a fitness center with a pool, weight room, treadmills/bikes/ellipticals, track, basketball courts, and rooms for exercise classes. It costs $230 for the year or $30 monthly passes. There are some other private gyms in my community but they are much more expensive and don't have a pool. Even the Y near me is more expensive, about $350 a year for the young adult age group. There is no specific swim time at my fitness center. As long as you have a membership and the facility is open, you can use the pool. I found going to the fitness center and working out regularly helpful for my pots. I usually ride the recumbent bikes and do some weight lifting (especially legs to help with blood pooling). The only reason I don't currently have a pass is because I prefer to exercise outside in the spring/summer.
  12. My doctor at the Cleveland Clinic spotted what was wrong. I was already seeing him several times a year for SVT and palpitations. As I started to show more signs of dysautonomia, he decided to run all of the tests for it as well as some blood work to rule out other stuff like anemia, thyroid problems, etc. I had a tilt table, autonomic reflex test, blood volume and hemodynamics, and a QSART. Previously I had countless EKGs, an echo, stress echo, 24 and 48 hour holter monitors, 30 day event monitors. I also had an EP study and an ablation for the SVT. After all the testing I was officially diagnosed with POTS, neurocardiogenic syncope, and inappropriate sinus tachycardia. They don't know for sure what caused mine, possibly a viral infection, and we are hoping I "outgrow" it by my late 20s.
  13. It definitely sounds like some kind of dysautonomia, but unfortunately we're not doctors and can't diagnose you. I know how you feel about doctors and seeing more specialists, but seeing one is probably a good idea for you. A cardiologist or neurologist that specializes in dysautonomia can run autonomic tests and try to figure out what's going on. They are also more familiar with medications and other things that can help you feel better. I'm not sure where you live, but I've had a lot of success with the Cleveland Clinic. I've also heard good things about Mayo clinic and Dr. Grubb in Toledo Ohio. Let me know if you have any other questions! I hope you can find some answers soon.
  14. Your labs would have shown if you were dehydrated (electrolytes would be off, hemoglobin would be high, etc.) but you could have low blood volume. Dehydration and hypovolemia different. Dehydration can be a cause hypovolemia, but other things can cause it too. Just because you have a low blood volume doesn't mean you are dehydrated. When I drink water, it seems like I just pee it all out without it helping my bp at all. Drinking Gatorade or other high sodium drinks helps since the salt helps you hold onto the fluid. I was told by a POTS specialist to drink at least a liter of Gatorade a day in addition to the other things I drink during the day. This has helped my bp stay around 100/70 instead of 90/60 and lower. I hope you get to feeling better soon! Getting sick on top of the dysautonomia is never fun. Unfortunately if it's a viral infection, a prescription for antibiotics won't help, you just have to rest and ride it out.
  15. I have had all of these tests and saw Dr. Jaegar last summer. He is very knowledgable about dysautonomia and hopefully he can help you. The QSART was no big deal for me. Just a burning/stinging sensation where the electrodes are. It was bearable for me and I have a low pain tolerance. I only had to do the first part of the reflex test. Just breathing into a tube with a heart monitor, breathing monitor, and beat by beat blood pressure monitor. The results I got from that part of the test did not indicate that I needed to do the second part of sticking your hand in ice water or getting the iv meds. For me the tilt table test and blood volume were much worse than these ones. The hypercalcemia is treatable and treating the anemia will also make you feel better. A hgb of 9 is pretty low considering the hospital i work at gives blood transfusions to people below 8. Was that your fasting glucose at 139 or did you eat before that? If that's fasting I would be concerned about diabetes. Let me know if you have any other questions about Dr. Jaegar or the tests you are having. Good luck at your appointment and let us know how it goes!
  16. There is something called tachycardia induced cardiomyopathy. Basically the heart becomes enlarged because it's constantly working too hard. From what I understand, POTS alone wouldn't cause cardiomyopathy but like Robin said, SVT and other electrical problems can cause it. I also had an ablation and take a beta blocker for SVT in addition to the POTS and inappropriate sinus tach. My doctor was also afraid I would develop cardiomyopathy/ heart failure because of the combined effect of SVT and sinus tach. Since having the ablation and being on the beta blocker, my ejection has actually improved by 10%.
  17. Yes pheochromocytomas can cause POTS symptoms but they occur in the adrenal glands, above the kidneys, not in the pituitary gland which is at the base of the brain. I'm curious too, is the cyst causing any symptoms? Glad everything looked good otherwise!
  18. Yes please go to the doctor if you think it is strep. If strep goes untreated it can turn into rheumatic fever and cause heart valve damage. It can also cause glomerulonephritis and damage your kidneys. Like it was mentioned above, make sure they do a strep culture if the rapid test comes back negative. As far as coping with pots and an illness goes, stay hydrated like you're doing and try to rest as much as possible. If it is strep, you will start to feel much better after starting antibiotics. I hope you feel better soon!
  19. I agree with gjensen, the QSART feels like little ant bites. It's just mildly uncomfortable. I also just did the first step of the reflex test. Apparently the results of the first part indicated that I didn't need to do the other parts. It was pretty simple. I just had to blow into this tube thing while hooked up to a heart monitor, breathing monitor, and beat-by-beat blood pressure monitor.
  20. Merlin, I wish I could say yes everyone will outgrow it! But unfortunately I don't know. No one seems to know why some of us get better and some of us don't. Hopefully someday we all will.
  21. My docs say that it's inappropriate sinus tachycardia (IST) causing my heart rate to increase when rolling over in bed or just moving without standing. With IST, the sinus node in the heart is very sensitive to adrenaline, which is released when you move. So when you roll over in bed, your heart over reacts to the adrenaline and causes tachycardia. Since beta blockers block the affect of adrenaline on the heart, it doesn't increase as drastically with simple movements.
  22. Your story is also very similar to mine. I started with palpitations around age 14. They were also diagnosed as simple PVCs and PACs. My POTS symptoms started around age 16-17 but it's hard to tell because they were very mild (higher resting heart rate and fatigue, no issues with bp yet). Then I started having episodes of SVT and my POTS symptoms got worse. I had an ablation for the SVT when I was 20 which got rid of it but POTS symptoms continued. I'm not sure why it's so common in teens. My doctors think mine was caused by having mono at age 16 so I'm guessing the virus could have caused yours too. The good news is, the younger you are when you get POTS, the more likely you are to outgrow it. My dr says 85-90% of his patients end up outgrowing it by their mid to late 20's.
  23. Without a beta blocker: laying or sitting is around 100, standing and slow walking is 120-130, walking up stairs or a hill is 160-170. It also goes to about 120 when I roll over in bed. With a beta blocker: laying or sitting is 60-75, standing and slow walking 85-95, can't get above 135-140 even with vigorous exercise. A beta blocker has been the only thing to ever slow down my heart rate. Exercise helps stabilize my bp but not heart rate.
  24. I have palpitations daily, both PVCs and PACs. I also have non sustained v-tach occasionally. I had an ablation in December 2011 for SVT because I was having episodes of it 3-5 times a week. Since then, I've only had one short episode of SVT in February of this year.
  25. Sue, that sounds like the hemodynamics test I had done. For the blood volume test they also inject a tracer, but then they draw blood at different time intervals. This tells them both your plasma and red blood cell volume.
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