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potsyturvy

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Everything posted by potsyturvy

  1. I used to take Flonase and I took 2 sprays once a day. It still didn't really work for me (nor did any allergy med I've ever tried lol). I know for myself, I used to get nosebleeds when using nose sprays because they were drying. I'm not sure what the other side effects could be though. When I had the nosebleeds, I started using saline spray, though, to help keep things moist. If I was you, I would probably either wait on the ENT to call back or check with a pharmacist to make sure it's okay to increase your dose. Hope this helps!!
  2. Lieze, I totally understand what you mean about the doctors. It's crazy how our bodies can feel so terrible, yet because a couple of tests come back normal they think it's all in our heads. It's sad that we often get treated like the cause of our problems is depression or like we are just seeking attention when there really is something going on, they just aren't looking in the right places. Thanks so much for your response Allene! I didn't know that pvc's could cause a sound like that. I don't know anything about the results of my last holter, but the one before showed hundreds of pvc's and a bunch of couplets and triplets. I had gone in because of palpitations and a pvc showed up on my ecg so that would definitely make sense that that could be what she heard. I definitely feel better knowing that! Lovebug, my doctor uses the term "autonomic workup" loosely. Basically, I'll do a stress test, echo, tilt, and sweat test, with a few other tests thrown in (don't remember what all they are, it's been a while since I had one). It seems more like a cardio work up to me, but the term he uses is autonomic workup. Hope that helps clarify
  3. 1. Going to geneticist to test for connective tissue disorders or try to get answers to something! 2. Go back to ep-cardio since I'm overdue for a visit and have a bunch of new symptoms since the last time I went. 3. Going to Mayo Clinic in October, looking for some underlying causes Plus a bunch of other doctor's appointments in between that are only semi-POTS related.
  4. Allene, they can do a blood test or a 24 hour urine test. The 24 hour urine test is more to test for pheochromocytoma though, I think. The one for POTS is where you lie down for 30 minutes in a dark room and then they take your blood. Then you are supposed to get up and they take it while you are standing. I've heard of people doing it on the tilt table before too. I'm still pretty new to POTS, so I'm not sure which way is "right". My doctor only ordered the supine test though, but he didn't really know anything about POTS. I'm glad to hear you were having a better day! Hope the job works out for you!!
  5. Thanks Tinks! You've got to love doctors that aren't very thorough lol. The 150 bpm heart rate should have made the doctor think something was wrong! I had a doctor not long ago who looked at my pulse of 120 while laying down and on beta blockers and he said "wow, you have a really good heart rate!" I almost burst out laughing;) Hopefully, my ep-cardio will take me more seriouly when I go see him again. I think I'm a couple months overdue for my autonomic work up anyways, so he should be pretty thorough.
  6. Dani, it's interesting that you have problems with vertigo too. Whenever my allergies are bad, I get horrible vertigo. I'm so sorry to hear that you are having such a rough month! I hope things clear up soon! Tinks, the catecholamine test is where they check your adrenaline and norepinephrine levels. A lot of us with POTS have trouble with adrenaline regulation when standing. I did the test in the supine position and my adrenaline was still pretty high, but I can't get a doctor who will pay attention to it, not sure what is causing it. Some doctors say that one of the guidelines for diagnosing POTS is an increase norepinephrine on standing. Not sure what they can do to treat it or anything though. I personally take an SSRI for adrenaline rushes and a beta blocker for IST.
  7. Sad to hear so many people are having a rough time right now . I wish we could all just get a magic cure for dysautonomia! My day has been a little frustrating. First, I had to call the lab today because they wrote that my catecholamine test was done in the upright position and it had actually been done in the supine position. So my results were out of the normal range for supine, but since they wrote that it was an upright test, it showed that they were normal. It took about 30 minutes to get that straightened out. Next, this is half-good, half bad stuff, I went to the hospital to do some applications for volunteer work there. I'm really excited about volunteering and am hoping I get accepted to help in Diagnostic Imaging but I'm not sure since I said I can't help with transporting patients. While I was there, I had to do a skin tb test and some blood work to make sure I'm not contagious. I had blood running down my arm after the tb test and after the blood draw, my blood soaked through the cotton ball and bandaid. I've also been having some excessive bruising lately (It looks like someone beat my legs with a baseball bat). So I guess there are some new symptoms I need to get checked out. So there you have it, some positive and some negative
  8. Yeah, I can get a little worry-wartish with my health too. The doctor said something about how it could be something that just occurs on occasional beats and not every time. Maybe that's what happened with your daughter? I made an appointment with my EP-cardio though (I was overdue with an appointment with him anyways) so I guess I'll bring it up then. Lucky me, I also have had a hard time with prolonged bleeding lately too and excessive bruising. I guess I'll have to bring that up too. I went to the hospital today and got some tests done so that I can volunteer there. They had to do the tb skin test and I had blood running down my arm after it. Then I had to get blood drawn and my blood soaked through the cotton ball they put on top of it. Hopefully my ep-cardio will take me serious about some of this stuff!
  9. I love this article! Me and my family all talk in spoons now
  10. I went to a cardio today for a follow-up of when I was having hundreds of heart palps a day (I'm used to 3 or 4 a day). My normal cardio was diagnosed with cancer not long ago and is getting treatment in another state, so I had to go to a cardio who doesn't know much about POTS. Before the cardio came in, his PA asked me about symptoms and listened to my heart. She said she could hear it make a "flump, flump, purr" sound a couple of times. When the cardio came in, he couldn't hear it and she couldn't find where it was doing it again, so he brushed me off and said since I'm going to Mayo in a couple of months they'll figure it out. Now, I'm kind of curious what that sound could be. Do any of you have any ideas? (on a side notes, I had a holter done a week ago and the doctor told me my results were not "anything really super major abnormal". I have no idea what that's supposed to mean lol. I don't like having to see doctor's that do not understand POTS though!!)
  11. I don't really like V8 juice, but I drink it every day because it is high sodium and high electrolytes. I love Taco Bell (even though I know it has tons of MSG in it) because it tastes good and is really salty. I also found some Pillsbury pizza rolls that have a lot of salt in them. The main thing I do for salt intake,though, is eat a scrambled egg with 3-4 grams of salt in it each morning. The protein in the egg makes the salt easier to digest, as large amounts of salt make me sick to my stomach. I carry slim jim's with me everywhere too, because they also are a pretty good source of salt. I tried cutting MSG out for a little while, but found it too difficult. I don't really have the energy to cook good nutritious meals and almost everything storebought has MSG. I currently eat yeast-free, but that is because of a severe allergy to yeast. It hasn't helped my POTS symptoms, but I don't get allergic reactions anymore Hope some of this helps!
  12. My Vitamin D levels were 26 a year ago when I was tested and I started taking a Vitamin D and Calcium Supplement I got from Walmart. A few months ago I was retested by an endocrinologist and my Vitamin D was 17. He prescribed 50,000 IU's of Vit. D 3 times a week for 3 months. I'm still not quite through the three months, but when I first started taking it I felt pretty lousy. It took about a month to notice I was feeling better. Then a few weeks ago I started having hundreds of palps a day and went to the dr to see if it was high calcium from the vitamin D, but my Vit. D level was 66 (yay!) and my calcium was 10.2 so they said that wasn't the problem. I'm still curious about hyperparathyroidism though, even though my calcium levels are technically normal. When I had my parathyroid tested though, my parathyroid hormone was a 14. Not sure if that's normal or not.
  13. (1) I'm allergic to yeast which is in almost everything, so everytime someone tries to get me to eat something that looks gross or smells bad, I have a good excuse of why I can't eat it. And if it's obvious it's something I'm not allergic too, I can just say it will flare up my GI symptoms. (2) I have a good excuse not to donate blood (I've always been scared of donating blood!) (3) I never get stuck blowing up balloons for birthday parties. (4) I'm the only person at my cardio in town who has POTS, so if I call with a question, I ALWAYS get a call back from my doctor, himself. (5) I have a good excuse to bring salty food and drinks with me wherever I go (Church included )
  14. So, I had my first cavity filled today and have to go in in another week or so to get the other one filled. I got really tachy and dizzy right after the injection. I don't remember what he said he gave me but it was epi free and he only gave me a small amount. He also used the smaller/faster drill because the other one gives me bad vertigo. Overall, I did okay with it. I took some tylenol and xanax about an hour before my appointment and I listened to my ipod while he was filling the cavity. He also didn't put the chair as low as normal and I kept my legs crossed to keep my bp up. I've had a low grade fever ever since then (99.6), had some near-syncope and low bp for about an hour after it, and had some blurred vision for a while too. Hopefully, I'll feel my "normal" tomorrow!
  15. It sounds like your doctor is the one with multiple personality disorder! jk. Wow. I wish I could say I was shocked to hear all this, but I've had similar experiences with my family doctor. First of all, obviously your doctor doesn't know much about psychology, because Multiple Personality Disorder is EXTREMELY rare... so rare that maybe 3 or 4 people ever have been confirmed of having it and even at that, there are doubts that they really had it. (I have a B.S. in psychology, so I'm not making this up or anything). Second, it would take many counseling sessions and tons of psychometric testing to determine that someone had MPD. Next, that is ridiculous that she talked to your husband when he is not approved on your HIPPA form. If I was you, I would at very least write a letter of complaint or call and complain about that. It definitely sounds like you need a new doctor. I understand where doctors are coming from with the psychology stuff. We all probably have some depression and anxiety issues with this, how could we not with dealing with a very misunderstood chronic illness? It is ridiculous though, when they try to blame all of our physiological problems on mental disorders that they do not even understand. My family doctor tries to blame all my physical symptoms and diagnoses on depression. I quit having him refer me to doctors after he told an endocrinologist that he referred me to that it was depression and the doctor did not take me seriously at all because of that. I have seen four different counselors/psychologists since my symptoms started and after multiple sessions and psych evals, all of them told me that I had some minor depression and anxiety that was CAUSED by a medical/physiological problem and needed to see better doctors. We all really have to be our own advocates since so many doctors don't take us serious or don't understand what is going on and try to blame it on other things they don't understand. I'm glad to hear that you went to an allergist on your own! I hope you can find a better doctor soon! Do you have any good support people around you? I know we all need all the support we can get going through all this. I will keep you in my thoughts and prayers!
  16. The NTI is actually what my dentist suggested I get too. He said he would fit me for one when I come in to get my first cavity filled. He said it would work a lot better for the clenching than a normal mouth guard would. That's cool that your dentist let you lay in the chair long enough to see how you would do in that position! I talked to my dentist about the chair already and he said he can leave it in more of a sitting position than a lying position because my bp drops a lot when I'm laying down. I'm really nervous about the anesthetic still. The dentist said he would only use a small amount of it and increase it as I say that I need it, but I still am freaking out a little. I just don't want it to be something that takes weeks or months to recover from!
  17. It didn't increase my headaches any. I get lots of head pressure and vertigo with POTS and once I started the .1 mg of Florinef it helped a lot with those symptoms. Maybe increasing it will help yours get better? I don't know, that was just my experience
  18. I take .1 mg of Florinef. My ep-cardio has tried to raise me to .2 mg twice now. The first time I had hypokalemia symptoms. The second time my feet swelled up really bad. I don't have super low blood pressure though, so I'm still not entirely sure why he kept trying to raise it! lol. I know it can help a lot with blood pressure issues for some people though. Hope it helps you!
  19. I don't know what mine would technically fall under. I had strep throat that kept getting misdiagnosed as a viral infection "that would get better in a week or two" for a year straight. Finally, I had a doctor smart enough to do a strep culture instead of the quick strep test and it came back positive. I don't think strep throat is a virus though, but it pretty much started all of this.
  20. I don't get nauseous or anything, but one of my eyes stays dilated WAY longer than the other and I always end up with a massive headache. I know a lot of us are really sensitive to medications, so you might have a sensitivity to something that is in the drops.
  21. It's weird that we all react even without the epi in it. I went in to the dentist today to get evaluated. It turns out I didn't losing a filling (it was wear from tmj teeth clenching), but I do have 2 cavities that need filled. My dentist was real cool about it when I explained my situation. He said he'll make two different appointments to fill each of them. He said he would use an epi free anesthetic and will use only a small amount and will only add more if I say I need it. So I'm still nervous, but am a little less nervous after the appointment today. Thanks for sharing all your stories! It's good to know I'm not the only one that reacts to this stuff!
  22. Thanks! I'm planning to go to my cardio tomorrow for them. I agree with you, it would be a lot easier if all we had wrong with us was a minor injury! Lol, I still try to keep cool by putting my feet in cold water I actually just found this thing online the other day called "frog togs" that I'm planning to get. They're kind of like sham-wows but are towels that you get wet and they stay cold for hours without getting you wet. It sounds cool to me!
  23. I haven't had any professional massages, but I did buy a massage chair for headaches. I've found that sometimes when I have a bad headache a massage helps and I would guess it would be like your therapist said that the blood flow isn't getting to the brain like it should. I hadn't thought about it helping with dizziness, but i'm going to have to try that the next time I'm dizzy now! Glad to hear that your appointment went so well!!
  24. So, to start off, today I have had palpitations ALL day. I usually don't get this many and they've been really annoying. I told my family and friends that were over about it and they were all like "oh yeah, I get those too." And my first thought was "really? You get 500 palpitations in a day??". So this isn't really nice, but I kind of wanted them to see what it was like to have POTS. So I started yelling "PALP" every time I had a palpitation. The first couple of times I think they were all just startled. After about 20 minutes of yelling PALP every time I had a palpitation, they were starting to get seriously concerned though! I had to remind them that it is not really abnormal for me to get palpitations and that it was okay. and I quit yelling PALP. lol. I don't know if I really have a point to this story, but I think every once in a while you just want your symptoms to be visible and for people to get an idea of what a normal day looks like for you. I usually don't tell people about my symptoms because they usually act like it's just normal stuff that everyone deals with or like I'm just trying to get attention, tonight for some reason, I just wanted them to kind of understand what life with POTS is like. I also figured you all would get a kick out of hearing about me yelling "PALP" at everyone We POTSies can make our own fun sometimes
  25. Ugh.. I'm sorry to hear that! I get those headaches too when the weather changes.. I also get where there is so much pressure in my head it feels like it's going to explode. I hope the weather there evens out soon so you can start feeling a little better!
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