Carly87

"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.

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!

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.

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.

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.

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.

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!

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!

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

"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.

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.

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.

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!!

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!

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.