CC101

LOL Great example bunny! Anytime an unexpected event happens is when I notice my symptoms the most. Fear, surprise, panic, and also sometimes when something angers me pretty good.

Well I am happy to hear that you have received acknowledgment of your condition. I too live in an area where the doctors have no idea about my condition and am overwhelmed by the idea of educating them (like they are going to listen to me type of feeling). For the dizziness, I have it EVERY time I stand up. My cardiologist wanted me to wear compression stockings 24/7 and said they should help with the dizziness. Well, I wore them for a few days and somewhat noticed a difference, but I did not wear them long enough to actually tell. I did not continue to wear them only because the closed-toe hurt my toes so I have been meaning to buy open-toe compression stocking but of course have not gotten around to it. I would say give them a try, I have heard compression garments help a lot of POTS patients. Best of luck to you! =)

Emma that is exactly how I felt. That if there was no visible or obvious reason then all is fine. That is why I kept going back for tests because the pain I have experienced does not feel as if I should ignore it one bit! Another frustrating & unanswered concern. I will be sure to let you know if I ever find anything else out.

Thanks so much for your in-depth response Elfie. & thank you as well Yogini. To sum up my POTS, I do not have the drop in blood pressure. Only the tachycardia. My cardio said that was HR was the most sensitive he's even seen when it came to my intolerance. Even when sitting, instead of lying, my HR goes past 100. My tilt table test was immediately positive as my HR went from 80-90 to 135-140 and 155+ when talking. I started on 25mg of metoprolol er succinate and within a month was up to 100mg. The 100mg has been working ever since, but now I believe it will need to be bumped again as just sitting here my HR is 105. I was fatigued before the meds and my neuro is wanting to run a sleep study to see if anything is wrong there. I wake up fatigued and stay fatigued All Day. It just isn't going away or getting better and I am just soo sick of it. You & I sound quite alike Elfie as dizziness, brain fog, and fatigue are most certainly my worst symptoms.. and headaches but i've always had chronic headaches as long as I can remember. So I will just keep taking these tests that my neuro wants to do & see where I can get. I just feel like I cannot go another day like this, it is getting pretty tough. This week especially. I will hang in there though, thank you for your great advice! Hope everyone is feeling well! Big Hugs. ♥ -CC

You know, I have a Children's Institute around here that had someone that dealt with POTS & I never took the moment to think that I could get in a see him or her. I should maybe look into that, thank you for your insight & Congrats again & Best of luck to you! =)

Thank you for all of your replies, it means a lot to me. It is sad to see that you all are still struggling with the fatigue. I thought there may be some type of stimulant POTS patients could be prescribed. I have seen some other POTS patients talking about this so was interested in what those medications were and how they interacted with beta blockers. I hope to find some answers because it is not a matter of just dealing with what I can on a day-to-day basis. It is an everyday thing bringing me way down. I am determined to get some relief and hope I can find a way, & I hope you all can too! ♥

Hello everyone, I hope you are feeling well today. I wanted to get some advice on how you all deal with your fatigue and how you get it under control. It is literally what is killing me with this whole POTS thing. I am copying and pasting from my last post, which was back when I posted my very first post and kind of disappeared after the fact due to just being scared and not being able to handle my diagnosis at the time. I apologized and thanked everyone who commented and welcomed me and the post is still there to read. So right now, I am hoping for your help on this issue. So, I am here asking a first of what may be many questions. I want to start with my fatigue; this is where my doctors are really beginning to frustrate me. My primary, neuro, and cardiologist know what I have, but I strongly believe they are not realizing exactly what I deal with on a day to day basis. They keep trying to come up with other reasons why I may be fatigued instead of realizing that POTS is why I am fatigued. My primary does not want to put me on anything that would affect my tachycardia, even though I am on betablockers that have my tachycardia under control. We have ruled out depression and thyroid problems, and since he does not want to put me on anything that would affect my tachycardia, he says there is nothing I Can do. Well, then I talked to my Neurologist. He wants to do a sleep study because he thinks That may be causing my fatigue! I am at my wits end, I could handle this so much better without this fatigue! I know I could. Does anyone have any suggestions or ideas? How are you all managing your fatigue? I am planning on going to a specialist soon, but in the meantime, is there anything I can do to convince these doctors to help me? BIG HUGS TO YOU ALL! & I hope your day is easy on you and that you are doing well. ♥ CC

Hi Emma. I am pretty new here too and although I may not have the answers, I sure can relate to you. I have been given NO answers to me chest pains and have just kind of accepted it as a symptom of my POTS, even though it is a very scary symptom. I have done 2 EKG's, an echo, and a stress test. They did the EKG when I complained of my chest pains at the hospital .. everything was fine. Cardiologist did another, everything was fine. As I continued to complain, he proceeded with an Echo. Everything was fine. Then, a whole new chest pain started to happen. On a Thursday, I had such a Jolt to my heart (It felt EXACTLY like it was my heart) and it was such a strong jolt that I dropped to my knees. This happened again the next day so I called in with my concerns. I couldn't get in for a stress test for another few weeks and was really beginning to worry. I had an episode to where I had to sit lying still breathing carefully and slowly or else it felt like my heart was being constricted with pain. It took a half an hour for it to pass. Went in for the stress-test .. everything was fine. It still has me so worried, even though I havnt had an attack like that since. SOMETHING has to be causing that right? Well according to them everything is fine. I take metoprolol er succinate & am wondering if that is causing any of it? I have trouble when laughing big, it seems to have a stress effect on my heart. It is scary, and I hope an answer is given soon. Please let us know anything you find out. BIG HUGS to you & hope you are doing well ♥ -CC

I don't know about anyone else.... but when I first got sick I dropped 25 lbs without trying and I just had a baby. One week after my daughter was born I was in my regular clothes and eating cheese cake. I remember my husband telling me that I looked like an "Ethopian"- sorry if that is not pc this was 11 years ago and as children of the 80's we are imprinted with the memory of first learning about people starving in Africa. Anyway- I have hyperadergenic pots. When I have a flare or am not on meds I can't keep weight on. This must be true for everyone with this kind of pots b/c when your body is working so hard you burn a ton of calories. Also Hyper pots people tend to have bathroom issues because of those stress hormones. Treating my pots has made my weight "normal" although I "feel fat" from being thin so long. I hope this makes sense. I know if I went off my meds ( And didn't die HAHA) I would lose weight really fast. "Regular" POTS people may be different. Kayjay, your case is like mine to a TEE! I work a very active job at Caterpillar in the warehouse, on my feet 8 hours of the day doing strenuous work. I lost weight when I was LAID OFF and was doing nothing close to what I was at work. You figure it would have been the opposite. I Too lost around 25 pounds and everywhere I went people who have always known me always commented on it. I Hated it. I have always had a little curve to me and did not like my rail thin appearance. I also experienced Palor (paleness) .. mostly in the face. I have gained 20pounds back after being on my beta blockers and I know that if I were to go off of them the weight would fall back off. As I was 25 pounds lighter for about 2 years, I too am feeling the "fatter" effect but tell myself I am much happier like this than I was before my beta blockers. I feel that at least my body looks normal again. As for the pailness, I have gained some color back in my face but still not all. I have also been diagnosed with IBS. It is crazy that POTS can affect so many things.

This is my hardship right now, on my journey to finding a doctor that truly understands. You just added a little bit more hope to my cup. So excited for you!! Congratulations! =)

I appreciate each and everyone's kind words and I hope you can forgive me for being on a hiatus after I posted my first post. I have kind of been in denial because every time I got online to read other stories, I would just cry. Not so much because I was sad, but because an overwhelming feeling takes over me to know that there ARE people out there who do know EXACTLY what I am going through. As S-Pot had mentioned above, suffering in silence is exactly how I would put it. To have something so hard to explain to people who have never even heard of such a thing is just the tip of the iceberg. I am just finding it difficult to deal with something with no support as I have a very small family and even they do not fully understand it all. I have come to realize that I am getting no where with these doctors around here and am in fact thinking of driving up to Chicago to talk with a specialist. One of my most difficult symptoms is my fatigue. I just keep telling myself that at 22 years old I should have countless energy and should be able to do what I want to do when I want to do it. I am coming to terms that I cannot, and am taking it one day at a time just as you all have said. It is really nice knowing that there are people who understand and I promise not to abandon my Potsy members again. I have gathered myself and am ready to fight. This illness may not be curable, but it will not define me. So, I am here asking a first of what may be many questions. I want to start with my fatigue; this is where my doctors are really beginning to frustrate me. My primary, neuro, and cardiologist know what I have, but I strongly believe they are not realizing exactly what I deal with on a day to day basis. They keep trying to come up with other reasons why I may be fatigued instead of realizing that POTS is why I am fatigued. My primary does not want to put me on anything that would affect my tachycardia, even though I am on betablockers that have my tachycardia under control. We have ruled out depression and thyroid problems, and since he does not want to put me on anything because of my tachycardia, he says there is nothing I Can do. Well, then I talked to my Neurologist. He wants to do a sleep study because he thinks That may be causing my fatigue! I am at my wits end, I could handle this so much better without this fatigue! I know I could. Does anyone have any suggestions or ideas? How are you all managing your fatigue? I am planning on going to a specialist soon, but in the meantime, is there anything I can do to convince these doctors to help me? BIG HUGS TO YOU ALL! & I hope your day is easy on you and that you are doing well. ♥ -CC

Hello everyone, how are you all feeling today? I hope you all are well; it's rainy and cold here in Illinois so it's not too good of a day for me, but I’m nice, warm, & snuggled in so I'm okay. Let me introduce myself. My name is Carissa and I am twenty-two years old. I was diagnosed with POTS two months ago. What prompted me to get this checked out was that I had my first visit to a family doctor, thanks to the new healthcare that is available to me. Well first I went in there he had asked me if I ever had any heart palpitations because my heart rate was a little high. It wasn’t until this visit that I started paying attention to my heart rate. I told him no, because at the time I didn’t really understand what palpitations were. So, after that visit, at work one day, on my break I was googling what your heart rate is supposed to be because I never knew what it was supposed to be in between. Well, my heart rate was about 140bpm. I then started to read on tachycardia and then kept reading about chest discomforts and read multiple times to seek immediate medical attention. Needless to say I freaked myself out and went to the Caterpillar nurse (I work full-time at Caterpillar in the warehouse) .. she got my HR at 155bpm and sent me to the hospital right away. After doing the EKG, blood test, urine test, etc. .. I was told everything is normal and to maybe check in with a cardiologist. I did this, but before I did this… I started doing my own research. I started my searching with “unknown tachycardia” .. I came across POTS on accident. I had just seen a link that contained the name “tachycardia” within its name and clicked on it. My mouth dropped wide open when I read the symptoms. My heart started beating so fast because I just KNEW this was it. & I just couldn’t even calm down til I convinced a cardiologist that this is what I had. SO many symptoms I Thought were just apart of who I was, proved to actually be something. I Couldn’t believe it. I started to read about the tilt-table test and called to schedule one. Ofcourse they wanted a referral so I could my family doctor and told them that I wanted a referral for a tilt table test. I think this helped me get diagnosed so quickly, because I for once in my life demanded what I wanted. I was just so sure. & of course I had to have the initial visit, and the doctor seemed to be a typical, pompous doctor that doesn’t appreciate when a patient tries to diagnose themselves. His whole attitude changed when he seen I was right. I layed on a table for an hour with my heart rate in between 80-90 the whole time, and as soon as I was titled it went up and Never went below 130. When I stood there and talked to the cardio it would go above 150. THANK GOODNESS they didn’t make me faint, because I told them the only time I would faint is if I’ve been standing for a long amount of time, and usually the heat is what makes me go overboard. Also, my blood pressure doesn’t drop at all.. maybe just a little but that’s it. So anyway, when I also told that cardio about the extreme fatigue, headaches/migraines, all-over body aches, and all-day dizziness (just a few!) I get he responded with, “Well we can’t do anything about that but we can try to get your heart rate and dizziness under control” GREAT I thought. So, this is all great that I got a diagnosis so quickly, even though I think I have dealt with this for at least 2 years, all the while thinking it was “just who I was” .. But, now what? No one knows about POTS, this is the HUGELY frustrating part as I am sure all of you know. The Caterpillar doctors are sympathetic for my heart rate, but have no idea that this isn’t even the huge problem for me. I was off on medical for two months until I got my HR under control. I returned to work two days ago as I am now on 75mg of Metoprolol ER Succinate and was instructed to wear knee-high compression stockings. This would be my 3rd day back, however, I left early yesterday and am now off today. The tachycardia has seemed to resurface with working, as I am on my feet for the whole 8 hours of the shift doing light-strenuous to heavy-strenuous work. None of the CAT nurses OR doctor know about POTS and its effects, nor does anyone I work with. My cardio only seems to care about the tachycardia, so today I talked with my family doctor and told him about the widespread pain, headaches, Extreme fatigue, etc. and he has scheduled me to see a Neurologist next Thursday. No one in my family knows about the effects of POTS either, and my significant other does, but I don’t think he does FULLY you know? I am feeling so lost, and every time I read this stories on here about others I cry every single time. I have to stay away from the stories because of how they make me cry. I can just relate to them SO well and to keep hearing how it is an invisible chronic illness that no one has any knowledge about is breaking my heart; because it can make us appear lazy and unwilling or that we constantly make up excuses. I am a very self-aware person and I have always had such a great amount of self-control and have never needed anybody for anything. I have always been so independent that now I know it has been unhealthy to do so. I don’t have anyone. I have worked myself to death over the past three years at this job and have focused solely on it. It is a job that doesn’t work with these conditions, it is too demanding. Now, I’m expected to go back just because my tachycardia is under control? What about the fact that I feel like I can’t get up and go anywhere? Let alone perform at the type of job I have? I’ve tried explaining to the CAT nurses and doctor, but they just don’t seem to grasp it. I don’t know what to do. This job pays me way over anything I Could find anywhere else and I have NEVER imagined myself quitting. I am in school full-time as well .. Online schooling is a godsend for us POTSY’s. I am wanting to live my life and make the type of money it takes to do that, but what am I supposed to do with something like this that’s holding me back? As you can tell I am new and I know I am acting as all newby’s would. I guess I just needed to get it out there and hear some wise words from you all. I’m sorry if this was so rambled and mixed up and flip flopped everywhere. Brain fog, you know. Thanks for listening guys. Please just ask about anything that didn’t make sense or that you are curious about. I look forward to hearing back from you! Big hugs!! -CC