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delphicdragon

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Everything posted by delphicdragon

  1. Scary new symptom for me. I'm stressed. Well, beyond stressed. I'm in the middle of my General Exam for my PhD, it's Christmas (first without my father), and the 7th is the 6th anniversary of some really bad events that happened in my life. Every day at approximately 6:30, I freak out. Nausea, Tachycardia, Paranoia, Cold, Clammy, etc. This happens whether I eat or not. I have no idea how to stop this or if this is POTS or stress related. Usually, by 8:30, I'm fine, but it really puts a cramp in supper. I would normally just not eat, but I'm underweight as it is, and don't want people to get the idea I'm anorexic. My mother is suggesting medication. I don't know what kind she wants (assuming Paxil or something like that, to calm me down), and I really don't want to go that route, because once I'm on it, I don't see myself ever getting off it. :-( Any advice on what to do? I don't want to go to the doctor because there are too many sick people there. Help! Sara
  2. Thought this was interesting. If you are B12 deficient, you have macrocytic anemia (Big red cells). If you are iron deficient, you have microcytic anermia (Little red cells). Here's the kicker... If you have BOTH, you have a normal red blood cells! Mainstream testing misses a LOT. I've probably been B12 deficient for about 5-7 years at this point (Maybe longer) No one tested for it until this year. When I started supplements my bruises that I've had for at least 15 years went away!! I was also profoundly Vitamin D deficient. No one tested for that either. Many things have to be off for it to show up on a CBC. Sara
  3. I work full time. I'm a graduate student, which thankfully allows for a flexible schedule. :-) I do data analysis at home if I'm having a really bad day, but getting into work and actually doing stuff makes me feel a lot better than sitting home watching TV. Sara (I'll attempt to put together a poll)
  4. Went to the casino today (lost $7.50) and there were a lot of people smoking there. My symptoms were ten times worse. I was dizzy, nauseous and visibly shaking (something I almost never do). I was only there a couple hours, but even now the shakiness hasn't left my gut. I've had asthma attacks triggered by cigars, so maybe this is a me thing- but I really think secondhand smoke makes things a ton worse autonomically speaking. Note, I have never smoked and grew up in a smoke free household. I may just be super sensitive. Sara
  5. I need 8-10 hours a night. My body gets very upset with me if I don't do that. All my symptoms get much worse, including severe tachycardia, nausea, less vertical tolerance, etc... I tried a long time ago to sleep less because I was told that I was "oversleeping". How does one oversleep? My head hits the pillow and I don't wake up until 10 hours later. If I lay down during the day, I will fall asleep. I was hoping someone could tell me what that means. Thanks. Sara
  6. The exam went well. Was going to go into work after, but my eyes were so dilated, I couldn't see to drive home, much less do the detailed stuff I need to do at work. So, I'm home. He did visual field testing, a regular eye exam, and a quick neuro exam. Other than trying to drive in the sun with dilated eyes, it went well. He knew about both EDS and POTS (I was SHOCKED!!)Apparently there's a Dr. Ehlers who works with him, so they tease this doctor all the time about it. My optic nerves are fine and the pit. tumor isn't affecting my vision. My pupils are different sizes and I have nerve damage from a car accident, but other than being a "strange bird" <-- his words, not mine. I'm good. Sara
  7. I'm scheduled for a comprehensive Neurological / Opthamological (eye) exam on Monday. According to the nurse, this is supposed to take 3 hours!!!! I will, supposedly, be with the doctor for those 3 hours. I can't imagine what they will do for those 3 hours. Does anyone have any idea what this consists of? I'm scared.... NOTE: I do have a pituitary tumor, which is why this was scheduled. Sara
  8. Florinef doesn't like me. It caused swelling and nausea along with chest pain last time I took it. (I think this is because I can't eat enough in the morning to counter the side-effects) I keep it with me for emergencies (ie, I turn white and know my BP has dropped out, or when I get my period) Sudafed, I love. It "convinces" my heart that it's beating too fast, so it slows my heartrate and it also raises my blood pressure. I know you can get used to it, so I save it for when I need to be upright. I have a prescription for the real stuff. It does tend to dry out my nose too much, but it's worth it. I would take it all the time if I could. Sara
  9. I have some issues with Gadolinium. It causes heart palps and slight nausea for me. I ask for a half dose if possible and for it to be given a bit slowly. Both of these reactions are normal with the contrast. (Wish I had been told that when it first happened!!!) I don't premedicate, as it isn't an allergic reaction. I have to have MRIs every 3 months to monitor a pituitary tumor, so this is getting to be old hat for me. Good luck! Sara
  10. I was found to be deficient in B12, and started taking it and it helped a lot. Didn't help the fatigue at all, but it did help my mood. Seemed to even me out a bit. Also, I had bruising that disappeared after starting the B12. I can now stand with my eyes closed and not fall over immediately. For me, I can't believe how much of a difference I've seen with the B12. I do take it orally- 1000mcgs. Can't get too much, it's water soluble, you'll pee out the excess. I think I'm deficient because my digestive tract works too fast and a lot of the nutrients just don't get absorbed. Sara
  11. Usually get this with a heavy meal. Try putting your feet up when you eat. This hits me probably 2-3 times a week and has since I was about 8. Putting my feet up helps prevent it. Doesn't tend to cause vomiting and goes away about a hour after I lay down. No idea WHAT it is, and my doctors don't know either. Can't say anything helps, though sometimes Papaya enzyme can cause the nausea to go away faster, as does going to the bathroom and passing gas. (TMI, I know). I think that gas pushes on my stomach/ intestines and that triggers the nausea, because I also tend to get nausea before I have to "go". Wish I had a solution. Anyone else? Sara
  12. Interesting topic. Last tilt table test I had (which was inconclusive - grumble) when they first tilted me up, my heart rate immediately jumped to 150 and starting climbing higher. I got severe chest pain and "oxygen hunger" aka I was having a lot of trouble breathing. I was lowered back down and given 3 liters/min oxygen and allowed to rest for a bit before I was tilted again. This time, on the oxygen. With a nurse coaching my breathing, my heart rate maxed out at 147, which was not high enough to make the tilt table test positive. (Started with a baseline of 120) I've always wondered since then if I should be on supplemental oxygen, as the chest pain decreased substantially on the oxygen. I'm also a little miffed that no note was made in my chart about me needing the oxygen either. :-( Maybe I should bring this up with my doctor, but after that event I stopped seeing the autonomic specialist and am being primarily treated by an endocrinologist. Sara
  13. I have an IV once a week. Though they can dump the fluid into me fast, it just comes right out and makes me feel sick, so it is done over a 4 hour period so it's nice and slow. I make sure that I drink water and eat salt during this time period as it seems to help the IV fluid stay in me longer. Perhaps they could do it slower... That was a big thing for me. I had an IV done once that hit a nerve and once where they got the fluid into the tissues (I think my veins SEE the needle coming and hide) and the only thing that helped was time and then ice/heat. The heat seemed to help the best, but that may just be me. I'm always cold. I'm a bad stick if I'm cold. Have them put a hot compress on your arm; that seems to help me. I have no idea if it gets worse. I have one good vein. I'm keeping my fingers crossed that it stays "good". No experience with hives from the tape (fingers crossed). You shouldn't get hives from the fluid, it's just saline after all. Perhaps talk to an allergist. Good luck! Sara
  14. I think it's better to know that you have it, then be in the dark about it. I was diagnosed in 2005 officially. My orthopedist knew about it in 1990; but he just called it hypermobility then. I'm happy I have an explanation for everything. I've learned not to push my joints and to brace when I exercise. I've also learned to take breaks so I don't strain my joints. I've also learned over the years how to pop things back in (and my friends have learned how to as well). Get the cardiac echos. That's important. Also, see if you can figure out your subtype. I think I'm hypermobile, but I do need to be tested for the vascular type before I get pregnant, as it can cause A LOT of problems during pregnancy. ednf.org is a great place to start. I write for Loose Connections (their newsletter). Feel free to PM me if you want some advice / support. Sara
  15. I would mention it to him. I'm still looking for a specialist to treat my EDS (the ortho is frustrated with me now). I figure it can't hurt to mention it, maybe he'll have some ideas or may have seen something like this before. Good luck with your appt. Sara
  16. A dysautonomia center would be awesome! I'd love to get some answers, but I'm fairly certain my dysautonomia is related to my Ehlers-Danlos because everything is too stretchy. I only have an MVP in the sitting position or when dehydrated- I have normal heart function lying down. That's pretty strange in an of itself. As for reactive hypoglycemia, I was diagnosed with this too. My blood glucose drops really low immediately after ingesting a sugary drink. It then slowly climbs up higher. I've had glucose readings as low as 12. At this point, I've stopped testing the sugar levels. I keep granola bars in the car and in my purse and eat every 90 mins. It works. No doctor knows why my glucose drops out like this. So, I manage it. Most doctors are waiting for me to get sicker in order to treat me. High blood pressure and high blood sugar are both easily treatable. Low values of either are not. As far as I'm concerned, autonomic disorders are not, in general, familial, unless there is an underlying medical condition. Ehlers-Danlos is autosomal dominant (1/2 of your kids will have it, if you do) and something like 70% of those with EDS have POTS. Therefore, POTS seems heritable, but in reality, it's the EDS, not the POTS that is genetic. Don't get me wrong, there ARE heritable forms of autonomic dysfunction, but they are very rare. We should all get together, with a bunch of doctors, and a white board, to determine the cause for each of us. I'm fairly certain the cause is different in most cases. Sara
  17. If you were just tested with one blood test, I would go through the trouble of having the blood work done again before you get the biopsy. I tested positive on the first round of blood work (on a single test out of four, but it was still considered positive), but negative on the next set, so I don't have to go through biopsy. I was told one of the tests was notorious for false positives. I technically don't have celiac. But, I know that I can't tolerate barley/malt, so I probably have some aspect of celiac. I also don't absorb Vitamin D or B12 (or probably a host of other ones) so who knows. Not going to go through the hassle to find out. I need the comfort of carbs/sugar right now due to stress, so I'm not going to try anything right now to see if less gluten makes me feel better. Sara
  18. Had no reaction to the shot. I've had them a few times. I did stay home from work, but I'm blaming the 14 vials of blood for the exhaustion I felt. Sara
  19. Forgive the scientist in me. One point I want to clear up -- I work with mice. Our mice are completely virus free. We wear protection when we do anything with them, including a respirator/mask, hair cover, shoe covers, gown, gloves. They are to protect the mice from our germs. The typical pet mouse is VERY different from the typical lab mouse. The pet mouse carries a lot of germs, the lab mouse is virtually sterile. Getting off the soapbox now... Sara
  20. Laura - What you said makes perfect sense from an immunology standpoint. Unfortunately, our military doesn't seem to get this. My boyfriend's brother is in Navy. They got the regular shot and a week later got the H1N1 shot. Guess what? All of them got H1N1! It was mild, but enough to make him quite uncomfortable. As for me getting the shot, I'm thinking "No" unless the flu turns more deadly. I've had very bad reactions to injections in the past (Paralysis with DTP and High Fever with Tetanus) and I've never had a flu shot. I also avoid egg and egg products in general (not sure why, just really don't like them). I was actually diagnosed with "Swine Flu" in July. It felt like a cold for about 3-4 days. Mild fever, cough, sore throat.... Boyfriend and his coworkers had something similar, though one of his coworkers did have a 103 fever for 4 days and was in bed. I think it's hitting everyone differently, even in the same family. Some people have almost nothing, others are very very sick. (This last statement is from my Mom who works at an elementary school). If I'm not immune, I'm still taking precautions, washing my hands, using hand sanitizer, not touching my face AT ALL. Hopefully, this will keep me safe. Sara
  21. I've never taken it, but Magnesium is given to pregnant women with pre-eclampsia to lower blood pressure. Maybe it's lowering yours too much. Sara
  22. I get these feelings too and am an EDSer as well. I have to be very careful about how tight my clothes are because any pressure on my stomach will make the digestive symptoms worse. The pain/ nausea/ etc are always worse standing up, but people without POTS report the same thing when sick. Ask some of your "normal" friends, most want to lie down when their stomach is upset/ painful. Why? Because it makes them feel better too! Moving slowly, as kayjay said can help too. I'm not sure if my nausea is due to EDS or not. I've had it everyday since I was 8, so it might be. Honestly, I never pursued it because I'm scared of what a Gastroenterologist is going to make me eat or drink to "figure out" what it is. Sara
  23. Yep, count me in on this one too. They usually last a maximum of 20 mins, especially if I make sure and lie down immediately when they start. I get them anywhere from 0 times per day to 3 or 4 times, usually 1 or 2 times. They tend to occur at night or after a big meal, though sometimes they hit mid-morning, especially if my stomach has been allowed to be empty for too long. Sara
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