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Carly87

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Everything posted by Carly87

  1. "But you don't look sick" = STORY OF MY LIFE FOR THE PAST TWO YEARS!! I feel for you and everyone else too! I struggle with this all the time...I feel blessed that I am still able to continue on with a semi-normal life but its a curse at the same time. No one believes me when I feel sick, not even family members. Family and friends just don't understand when I can go out and about and be perfectly fine one day, but the next I have to reject an invitation to go out because I feel too sick. Heck, DOCTORS don't even believe me. I've had enough of it and I've just decided to live life at my OWN pace and not worry about what other people think...We all know what we're dealing with and what we have to do. If it means taking days off, passing on get-togethers/parties/etc, then so be it. POTS/dys has made me realize exactly how much of my life has been spent trying to please others...I've come to the conclusion that when it comes to my health, that is the ONE thing I need to be selfish over! Easier said than done but try not to worry about what the others think. Do what you need to do.
  2. Hey you aren't alone with the anxiety. I had anxiety really bad for the first 6 months that my POTS began. I initially developed anxiety issues due to not knowing what was going on with the many symptoms I was having, which eventually progressed into panic disorder. Do you get anxious because of the symptoms? Or anxious out of the blue? It is a lot harder to control anxiety that has gotten to the point where you are anxious about being anxious/having an anxiety attack (which I was, at one time.) But it doesn't sound like you are at that point. There are certain times a month that I know increased anxiety is a given (and most females agree) starting after ovulation and progressively getting worse through PMS. Has your anxiety fallen into this category? Oh, Anytime I have a new symptom I get anxious too. I have heard of some people going on Prozac for anxiety but it is primarily used for depression. Other meds like Effexor, Lexapro, Zoloft, and Wellbutrin are the SSRIs that more people use for anxiety. If you feel Prozac is working well for your depression, I probably wouldn't change meds but try something else to eliminate the anxiety. I don't suffer daily but when I feel anxiety I use remedies such as Chamomile tea, bach's rescue remedy, and when things get really bad I have a prescription of xanax .25mg that I take for emergencies!
  3. Kind of off topic, but can someone explain to me about this "hand in ice water" thing? I have actually done this recently without even knowing it had anything to do with this, but nothing happened to me...Except I got a really cold hand.
  4. Taking a good B-complex vitamin (I've been dedicated in taking them daily for the past few weeks!) has really seemed to help with my fatigue. I like the Nature Made Soft-Gel brand. I also take 1 scoop of Sambazon's Acai Powerscoop daily. This seems to help a lot as well.
  5. You have a lot to be proud of! Keep up the good work!! Don't worry too much about pushing yourself too far this once. It sounds like you know your boundaries. Sometimes we need to give ourselves that extra push to show us what we are capable of and give us confidence! Hope things continue going well for you.
  6. I always am charting my cycle! I chart my symptoms in an attempt to further figure out my body. Its crazy to see the correlation of symptoms that arise (or don't arise) at certain points in the month. If you haven't already, give it a try. You can kill two birds w/ one stone tracking both fertility and maybe finding out new things about your hormones in connection to POTS. My temp is always slightly lower, usually 97.5...Around ovulation I notice my temp goes up, feels like I'm running a low grade fever actually! When I feel like this my temperature is actually "normal" at around 98.6 degrees, lasts for about half a day. I guess I lucked out in the sense that I can always tell exactly when I'm ovulating (not just based on temp, other factors too.) I should mention that my temp only goes up during ovulation and back down for the rest of the cycle.
  7. I was prescribed both Zoloft in the past. It was prescribed for anxiety & depression, however, not POTS. If you take Zoloft, make sure to start at a smaller dose...I mean even smaller than what they tell you is the "starting dose." I took the 25mg (smallest starting dose) and got sooo sick. Hot flashes/sweats/Panic attacks all night long. The next day I was incredibly nauseas and aching all over. I was extremely depressed so I continued taking it because I felt like it was my last hope for feeling better if I made it through the initial few weeks. I broke it up and increased my dosages up to 25 mg and stayed there for almost half of a year. I tolerated the medication a lot better by titrating it up much more slowly than my doctor would have recommended. Overall, I felt like it really didn't do anything though, so I'm thinking so maybe low doses for long periods of time is not the answer for Zoloft. I must say though, everybody is so different when it comes to these drugs, you just have to find one that fits with your own particular body chemistry. I eventually weaned myself off the zoloft and have been off of it and all SSRIs for over a year now. I guess I have no success story, but I wanted to share my experiences and I look forward to seeing the other responses you get!
  8. Same thing happened to me in the beginning! I went 6 MONTHS without an appetite. I remember it well...Eating was never enjoyable to me, I just did it because I had to. I lost a lot of weight. I remember the first time I got hungry so well too!! I was with my roommate and all of a sudden I felt hunger so I took advantage of it and ordered the tastiest most fattening chicken finger sub ever. Not a good food for us POTS people, but it sure tasted good at the time. Since then, the appetite has wavered with my symptoms, but do not fear...It will come back!
  9. Here are my "Everyday Symptoms." Depending on if I'm having a good or bad day, these symptoms can range from mildly life-altering to extremely debilitating: -Tachycardia upon standing. Especially severe in the AM and when I am late on my beta blocker. -Exercise Intolerance. -Blackout/pre-syncope when I stand up from laying down. -Sensitivity to Heat/Cold -Reactive Hypoglycemia -Costochrondritis (worse on some days, better on others.) -Lightheadedness -Fatigue -Adrenaline rushes I also deal with these symptoms but not every day. Many of these accompany PMS along with an increase in severity of my everday symptoms: -Vertigo -IBS-type stuff -Horrible PMS: bloating, nausea, severe breast swelling, increased tachy, anxiety. -Migraines lasting anywhere from a few hours to a week or more. -Brain fog -Chest Pains (both sharp and achy.) -Random Pains in my body
  10. "I find I have energy to work OR to engage in activites I enjoy, but I do not have the energy for both." I voted for that option but I think I'm somewhere in between...I currently work a part-time job. I work 9-4 Mondays-Fridays. When I get back home every day, I am just DRAINED! I do work outside and have to ride my bike to and from work (short distance,) so those may be contributing factors. After work, I usually can't do any activity like housework or anything that requires me to be on my feet. I do like to relax and practice my piano, go online, or do crafty things so I guess those can count as activities I enjoy! I just don't have energy for the more 'active' activities.
  11. Heat is definitely a trigger for me. If I get overheated I'm usually down and out for the whole day. Thankfully, I'm handling the heat a bit better this summer...But now I have a new problem: HUMIDITY!!! The heat + humidity is a terrible terrible combination for me.
  12. I don't have much experience job searching as I'm still in college, but have you ever thought about working from home? I generated some spare cash by doing some freelance writing. Full-time freelancers can make upwards of $50,000/year once they find their niche...Not a bad job, especially since you are able to work from home! There are many other jobs where you can work from home as well. Maybe someone else here has more experience/knowledge in that arena than I an can elaborate more.
  13. I haven't worked with any doctors to discover the cause...But its something that I think about all the time. I basically started noticing symptoms almost 2 years ago, in the fall of 2006, out of the blue. It came on over a span of a few weeks. I was noticing that I was becoming more fatigued than usual in my dance classes, and going up flights of stairs was a huge challenge for me. It progressively got worse and became full-blown around November. From November-May of that year I struggled so badly every day. Standing up was a huge challenge, I never had a SINGLE good day. Since then, my life has been UP and DOWN, but I have made significant improvements overall. I worked my butt off trying to regain some normalcy in my life...So far so good...I still have horrible days where I'm basically bed-ridden, but on MOST days I'm holding my own and living a normal life, even exercising again. I honestly don't know if I've had this my whole life (atleast had the capacity to develop POTS/Dyt) or if it is something that just developed due to an unknown cause. I never had a bad virus that most people have before they develop POTS out of the blue. I know I always have had Mitral Valve Prolapse, and there is a connection to MVP with dysautonomia. My best guess is that I've always had it in me to develop this...There are too many incidences in my childhood that fit...Maybe the added stress I was under right before I developed the symptoms may have been the 'straw that broke the camel's back.' I hope I find some answers some day too. I think once we find out the CAUSE of this disease, it will be a lot easier to treat! I'm wishing you and everyone success with finding answers!!
  14. Thanks everyone! I am going to try to talk to his mother. The only problem is that this boy stays with his grandmother (who lives right near the park) all day, every day...I've actually never met his mother before, but I have met his grandmother. I might have to ask her. I'm glad to know that what I'm doing is acceptable!! I'm just going with what feels right. Thanks for the help!
  15. JBrian, I'm pretty sure its not the loss of blood volume that makes people with pots lose weight. Our blood does not account for much of our body weight. The weight loss/gain has to do with the deregulation of our metabolisms I think. That is the most logical guess, but someone correct me if I'm wrong.
  16. I need some advice! I know a lot of you are parents here, so I want to know what you think. I work for my town's recreation department each summer. Basically, myself and a few other staff members are assigned to a park and we work there doing crafts/playing games with the kids who attend. This year, we have had a boy who is ten years old, Ryan, come down and hang out/make crafts. He lives right near the park and he can't wait to come down and hang out with us every day. Usually kids just make a craft or two and leave, but Ryan stays with us all day long. None of us have ever minded, because he is a great kid and incredibly mature for his age. He's probably the smartest and most mature ten year old I've ever met. We also know that he has family troubles at home...His parents divorced and his father is now deceased. He has definitely gone through a lot, and has hinted that he loves being at the park with us because it gives him an escape for awhile, and that he has friends who care about him here. I can relate to a lot of what this kid is going through, and I just feel this need to help him...Well, I'm going away for my senior year of college at the end of the summer. I wanted to keep in touch with him somehow, maybe as a pen-pal, throughout the school year. It just seems like he doesn't have too many people in his life to turn to, and I know how that is. My question to you is, is this even appropriate? I'm trying to help, but I don't want to overstep any boundaries. Any input?
  17. It appears that I am opposite of you. My emotions since POTS have been ramped up to the extreme! Its hard to control sometimes, because whether they're good or bad emotions, they all still lead to stress. What medications are you on? Any SSRIs can certainly "numb" emotions in certain people...I had a short stint with Zoloft last year and I literally felt like a walking zombie on that med. No emotions whatsoever, complete apathy for everything. Beta-blockers, too, cause this in some people because they slow down your system. This is especially true if you are on a non-selective beta-blocker like propranolol. I don't take any meds besides a small dose of beta-blocker, so I'm assuming its all the POTS ramping up my emotions. If you aren't on any medication that could potentially dull the emotions, it would be interesting to see other responses as to why POTS might dull certain people's but heighten others.
  18. It sounds like a type of exercise-induced asthma to me. I found an interesting site stating that doctors are often misdiagnosing exercise-induced asthma for exercise-induced hyperventilation and vice-versa. Here is the link and in there it states the difference between the two is that exercise-induced asthma almost always involves coughing or wheezing whereas hyperventilation does not. I'm really prone to hyperventilation, especially when I'm stressed...I can tell you from experience, it doesn't feel like I'm gasping for air or struggling to breath when I'm hyperventilating...More like my breathing just got switched into "high gear" and I have trouble getting it back down. Sometimes I don't even realize I'm hyperventilating until my hands start tingling. When this happens I automatically check my breath because I'm most likely taking really short quick breaths and I don't even notice! Hollie, your story really hit home for me! I had an experience, when I was TWELVE that was pretty much the same thing you had! I was on a carnival ride and it was the last ride of the night so the guy controlling the ride asked if we wanted an extra long ride...It was that ride that swings around upside down over and over. Well, I had never been on that ride and I thought it would be fun so we all agreed. Once it started, I wanted to get off but I couldn't. I basically freaked out and felt so sick once the ride finally stopped. My friend's mom had to take me home and in the car my legs, arms, etc all numb...My hands were clenched up in a weird way (really stiff and could not move) and I had NO IDEA what happened...It passed shortly after I got home and settled down. My mom was just about to take me to the ER. Nothing like that ever happened again, as I had no history with panic or anything back then. I now realize that was my FIRST panic attack!! Crazy, I guess I had it in me all along. Thanks for sharing your story though, that whole clenched hands and numb legs thing was a total mystery to me even to this day...And I've had plennnnnty of panic attacks today where all that will tingle at most is my hands and arms!
  19. Rachel, same thing happened to me! I was so freaked out by it...I'm pretty sure I figured out why (in my case) this happened. Well, it was before I was on any treatment for POTS or my fast heart rate and my rates were high literally ALL the time. Sitting would be like 90 (as opposed to 60-70 now) and standing/walking was anywhere from 120-200. I made a 15 minute walk to and from class multiple times a day which was a HUGE huge struggle! Its hard being sick and keeping up with the same level of activity as before you were sick...But because it was school and with all of my committments, I had to. So as much as I wanted to just collapse I didn't really have a choice. The way I felt after taking a 15 minute walk to class was like I had run a 25 mile marathon..My body was obviously burning up calories because of all that work so its pretty logical that this would reflect on my weight. Maybe your case is similar? Once I started on beta-blockers I gained weight. I've gained about 10lbs in 5 months on them, and ironically, my diet changed for the better and I started some exercises. Oh well, I needed a few pounds anyways. Thankfully, I've been at a steady weight for awhile now, so I'm hoping my body has gotten used to the lower rates from the beta and my metabolism has adjusted.
  20. I can totally relate. Stress aggravates my symptoms a lot. Like another poster said, even strong emotions like excitement or happiness can bother me too! I don't have a huge problem with anxiety anymore but my body still overreacts to things, which causes symptoms to flare. I have heard that any extreme, whether happy or sad, is still stress either way. This past year at school I got some REALLY good news that almost brought me to tears and I almost had to laugh because my symptoms acted up major after that!! I'm talking dizziness, jitteryness, sick feeling and faster heart rate for the rest of the day.
  21. I am one of those people who goes to a doctor who doesn't understand...I've been through dozens of random appointments and testing, 2 PCPs, a cardiologist, not to mention all the ER doctors...Before coming to DINET, I honestly just thought this was something a doctor could not help me with. I feel like I've almost given up on doctors. It is embarrassing to go to the doctor and try to explain the stuff that I deal with on a daily basis, just for them to recommend an SSRI because "ANXIETY/PANIC DISORDER" is written all over my files. I ask too many questions and it makes me look neurotic and highstrung, further promoting the "anxiety" thing. So many health professionals also thing I'm a hypochondriac because I complain of all these different ailments at different points in time. I also have a problem with people taking me seriously because of how I look and doctors are no exception. It really is humiliating for me to go into the office or ER in such ill health and get snubbed because I'm young, blonde, and look fit. My cardiologist consistently tells me nothing is wrong because my echo is normal, some people just have high heart rates. My PCP did actually diagnose me with Inappropriate Sinus Tachycardia, (which he still believes is caused by anxiety), and he treats that with beta-blockers. I rarely have panic attacks, and my anxiety is at a manageable level- however my symptoms (and there are many) persist. I guess I just put up with it because the beta-blockers do help a lot, and I feel like I know much more about my condition than a doctor around here would. I would love to see Dr. Grubb or another equally knowledgeable specialist, though it is probably impossible at this point in time. I live in Western NY and the travel and cost would be too much for a broke college student such as myself. On an ending note, I am incredibly thankful that my dysautonomia is manageable (for the most part) and that this forum has given me the knowledge to keep on movin forward!
  22. I know there are some people who take Metoprolol here, so I hope you can answer this question for me. I currently take 12.5 mg in the AM and PM. There is a period of time in the late afternoon, approx 10 hrs after I take my first dose, when I feel I need another half. Instead of taking this pill 3 different times a day, and possibly at slightly different times every day, I was considering maybe switching to an extended release beta blocker. I noticed that there is a Metoprolol ER, but I'm seeing all different names for it and its confusing me. I currently take Metoprolol but my doc refers to it as "Lopressor." I also see things that say metoprolol=Toprol, and metoprolol ER=Toprol XL? So is what I take the same as just regular Toprol, except the generic? Sorry if this is confusing! There is ONE thing I'm kind of weary about in taking the extended release...Well, I feel like regular metoprolol gets into my system quite fast which is JUST what I need in the AM (my worst time of day, besides the "crash" in the late afternoon!) But would the extended release take longer to act when I need to get up and go right away in the AM? If this was the case, I wonder if I could take 12.5 mg of metoprolol and the ER tab maybe 5 hrs later or something. Either way I'm gonna bring this up to my doctor, despite his lack of understanding of POTS, he still treats me for Inappropriate Sinus Tachy so he'll hopefully understand.
  23. I'm kind of all over the place... I'm a college student, so its not unheard of for me to get 3,4,5 hours of sleep per night. I usually get by fine on 6-7 although 8-10 hours is definitely preferable to me. Sadly, schoolwork/roommates make it almost impossible to get this much sleep in one night. This past semester at school I probably averaged 6 hours a night...Horrible I know. When I came back from school there were some nights were I just crashed and slept for 12 hours but sleeping so much makes me feel even more tired. Its kind of like a weird cycle. I feel most refreshed after 10 hours. 12 was too much and it made me even more tired, plus, there is no way I could stick to that sleep routine for long because I hated waking up at noon every day and I also now have a job that starts at 9am.
  24. I wouldn't necessarily say I was drinking MORE than 2-3L of water per day...I just tended to drink quite a bit in one sitting thinking that it would get me hydrated when in fact it just passed right through (flushing out all the electrolytes, too.) For example, each morning I would wake up and feel horrible with the racing heart stuff. Usually, when I can hold onto some water, this problem decreases quite significantly...So before I went to my morning classes I'd just down a ton of water. I'd keep drinking more because drinking a lot after I eat lunch or dinner always helps *non-coincedentally, I consume foods containing sodium for lunch and dinner almost always, unlike breakfast!* so by continuously drinking in hopes of feeling better I was actually making my situation worse. I ended up going to the ER because I was having chest pains, had incredible fatigue for weeks prior, and my POTS symptoms were pretty much unbearable. I usually am never truly fatigued, as in muscle weakness, but in the weeks leading up to my ER visit it was horrible. When they ran the blood tests, the only thing that was "off" was low potassium, but the doctors say that the low potassium didn't cause the symptoms I was having. Who knows!! Anyways, I got 2 little cups of liquid potassium and it was horrible, but it restored my levels. I do not supplement with potassium. My doctors told me to eat balanced and I should be fine. Apparently, they said that potassium is hard to deplete even though it seems so many people here have problems with deficiency! Just another example of doctors' unfamiliarity with pots. Anyways, I got my blood tested 3 months later and I was in normal range. I will say though, I did take actions on my own try to include more potassium-rich foods in my diet like Yams, potatoes, bananas, etc. and that seemed to help. I have recently begun increasing sodium intake and it helps, which apparently helps with potassium as well. Hope this answered your questions, anything else let me know!
  25. I just learned about this whole sodium/potassium relationship earlier this year, when I was in the hospital. I had low potassium caused by drinking TOO MUCH! I drink about 2-3L of water every day. Before I knew about the importance of sodium, I would just drink water like crazy and hope to feel better even though the water was passing right through me. I guess I am one of those POTS patients who usually pees a lot or pees shortly after drinking if I drink water by itself. Before I came to these boards, I would just drink slowly and that would help. I tried introducing a bit of sodium into my diet and it has made a huge difference in holding on to water!
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