Jordan5815

Google has a search called google scholar http://scholar.google.com/ That is how I have found alot of information about stuff not discussed on this forum I try and use the search function on the forum before I make/ask any questions. Try it out yourself it has alot of accurate results and maybe one of the admins or moderators will place that link into one of the stickies for members to see it

The thing with the heart stopped I went out and got a polar heart monitor watch with a strap i need to wear around my chest...... I had a good workout today my heart rate for about 1 hour was at 145 during the excercise occasionally going to 180 when i was doing wind sprints. Something I don't regret doing after the fact was playing basketball with some participants of the workout program. My was down to 150 bpm before i started playing and quickly rose to the 190's when playing I did not want to ruin the game so kept playing it went to 194 the alarm kept going off on the watch but i said screw it. bottom line is I had a good time Very tired now but I think it's good for the long run. Yesterday I was so excited to see my standing hr was sitting at 85-95 woke up this morning and it was 110-135 standing it's the mornings for some reason which is weird because my bp usually stays the same throughout the day. right now standing it's chillin at 88-95 so it's still doing good but I feel like this is going to bring down my hr in the long run. I expect the definately make a big I did it post at the end of the 6 week bootcamp which is now 5 weeks since I completed 1!!!!! With the results it has gotten me. BTW? I read something that kind of freaked me out I read that pots can be an early onset of msa..... Is that true? BTW I gained 4 lb's since doing all of this I am now 129lb's for those who don't know when i was 14 i lost 40 lb's in 2 months for no apparent and no known cause. Now I'm 18

I'm not overweight im severely underweight..... lost 40lb's- 60lb's in 2 month period back when i was 14 for no apparent reason still don't know why that happened but i never gained it back. towards the dysautonomia that would be nice if i was just seriously deconditioned but i doubt it strongly because 1 1/2 yr's I was boxing and my hr was resting at 35bpm before all this crap happened. it came on gradually no overnight..... first they thought it was pheochromocytoma then got diagnosis for pots later.

day 3 heart i caught my hr at 175 not as bad as the other days considering it was supposedly a harder workout......waiting for insurance to see dr. grubb since he is the one everyone is talking about..... I'm going to call them up every week and see about cancellations because i will make sure i'll get there as soon as possible instead of waiting the 10 months. current meds 12.5mg metoprolol at night time..... valium: 12.5mg half tablet 3 times daily and 1 at bed. so total 12.5mg im doing less then prescribed and it seems to work so i don't have the sudden Big episodes.....

I'll lighten up on it a little bit and let them know... But I still want to push myself for the longterm. If it puts anyone at ease they do have defibrillators, I've been counting my heart beats manually after each workout and it does go into the 200's but im getting a heart rate watch over the weekend. btw I'm 18 my heart should be able to go in the 200's wind getting knocked out of me usually occurs after my workouts when my heart is slowing down. I also used to be a biiiig athlete trained everyday was even sponsored in tennis. toured in australia before a rotator cuff injury.

Day 2 more extreme I'm talking alot more extreme. It was all in sets of so and so but i did a total of 75 squats, with 10 pound weights in hand. 75 lunges with 10 pound weights, side ways lunges, 100 pushups, 50 reps, you get the idea it was alot........ even jumping squats on top of it woah those were hard lol. Still trying to figure out what that heart thing could be tho..... it's sometimes starts in my stirnum but always ends with the wind knocked out of me........ But I feel great now after the workout and the heart rate calmed down. I'm glad I did it. They know I have pots but do not know what it is, I'm not trying to separate myself from the rest of the people in any way most of the people there are way overweight so are having problems as well. So... I kind of feel equalized I had the best time in the mile tho so I did push myself. Tommorrow is supposed to be more intense Weekend I will be able to rest but at the end of the 6 weeks I should be in alot better shape then I currently am in......... even more interesting muscles do not even hurt because I am really strong just my heart rate shoots up so I need to watch it.

I was reading about what happens when the wind gets knocked out of you..... I found out it paralyzes your diaphram which = wind knocked out of you..... I'm thinking it could happen because I'm very skinny and my heart beats really hard. Since I'm skinny when my heart beats really hard it could paralyze my diaphram which would knock the breathe out of me is that possible? because I'm talking I'm really skinny i gained a little weight tho now I'm 125lbs and 5ft 11in. I'm setting a goal for 133 lb's hopefully soon it will happen.

I started a 6 week bootcamp at the ymca it took me 13minutes and 15 seconds to run a mile but afterwards my heart was not just pumping fast and hard like normal people's do Mine felt like the atria did not constrict and the ventricle decided to go for it and the breathe instantly got knocked out of me. it happens on and off for about 1 minute. anyone know what is up with that? anyone else have that? All I know is the bootcamp and I'm in the beginners class is kicking my booty lol. they did the assesment pushups each timed for 1 minute maybe this will encourage other people to excercise as well. but yeah my heart did go up in the 200's by the end of everything. pushups: 32 situps: 46 1 mile: 13:15 But yes any answers about that heart deal doctors on the ekg's say it's perfectly normal and they have caught it when it was happening on ekg which is weird. Well, I think there should be a cool excercise thread for everyone makes a group effort to do the slightest bit they can do. I am fortunate that my body is still in "ok" shape just my pots symptoms flare with the working out just does not put me into one of those huuuuuge episodes the valium definately helped with that don't know why but apparently it acts as a central nervous system depressent which won't make my sympathetic take off so fast. Well get back to me guys !!!!

Ohh i got it, Remember I was looking and wondering if there was a secondary condition to my pots..... I think it could be that hyperdynamic circulation..... It causes pots as i looked more into it.

I got prescribed diazepam (AKA) Valium to treat the anxiety for those "attacks" I have. What's strange about it is it is actually giving me more energy and I have not had one since. Still have fast heart rate but it's slightly lowered upon standing....... I also have managed to be able to work out a bit and am more hungry. What's even more strange is my pupils have always been dialated and they no longer are when I am on it, They constrict properly. I was reading the NDRF handbook and on page 122 and 123 it talks about hyperadregeneric Pots and HyperDynamic Circulation Syndrome. Now, Diazepam is usually treated for that hyperdynamic syndrome but what is getting to me is it sais the persons heart rate is usually pretty high from what I could dig up about it there is not much to work with. If you look at my old posts my heart rate and blood pressure rise when standing and rise with minimal excercise. Is Hyperdynamic circulation a form of dysautonomia because the symptoms are dead on to POTS if that is what I have only difference is that valium works for some strange reason. The NDRF handbook said that the two conditions are are very close together but was looking on this website and could not find a thing about it. Would appreciate a reply back and if you have more information go ahead and hook me up P.S. should I see a dysautonomia specialist for both? P.P.S. remember my doctors? They magically lost those magical EKG's that I had that showed the funny stuff doctors like to cover there butts

Firstly, Thank you all for responding I really really appreciate it and great advice was given! Sorry for the delay I have been in bed for a little while and right now I'm feeling pretty good. I am not ignoring that research at all, infact that is why I'm a little freaked out right now about having it done. My doctor wants to have it done right away he does not mean anything else and i did not misunderstand him.... He is pretty arrogant which I do not mind if he would listen as well... yes the weight loss is questionable to me very. I need to get more into that... BTW, primary care physician prescribed me valium which seems to help alot with those bad attacks I get which is not anxiety attacks.... I can see a difference in it tho but don't want to stay on it. Quick question tho: I went to the ER recently because when I was having one of my "Attacks" my heart was going in the 200's skipping and throwing in extra beats and got really freaked out ambulance picked me up because i could not move both my legs were numb and arms.... so could not get up had someone call for me. They could not do anything for me after I told them what I had, had severe chest pain and they gave me morphine for that..... One thing about that morphine and want to know why it did what it did. They injected the morphine into me and i stayed for 2 hours after that.. My eyes are always dialated and when i was on that they were not... I said hey I want to check something they kept me on the heart monitor to let me get up and my heart rate stayed in the 70 beats per minute range upon standing when I was on it...... Does anyone know why that would be? What the heck is in morphine that would completely get rid of pots while it is active???????? I want to get to the bottom of that! - John

Hey Guys, First off my tilt table test showed I had pots, doctor never told me tho the nurse told me. The doctor was just talking about the ekg's that were taken during my so called "adrenaline surges" He said that something did not look right in one of the ekg's but said he wants to do an ep study with catheter ablation, he will also inject adrenalin into me. He is also doing a heart mri, sleep apnea test, also getting me checked for chronic fatigue syndrome. I think he could be driving past the root of the problem..... Problem: I don't know what he is doing because he never even told me the ttt came out positive for pots. I also believe I have the hyperadrenergic form of pots. Reasons: My blood pressure rises upon standing and goes up the longer i stand up. Heart rate goes up "instantly" upon standing. This occured gradually and it is progressive keeps getting worse. Worried: I read 2 articles one by Dr. Grubb that states getting catheter ablation can worsen symptoms even more then they are currently for the hyperadrenergic form. Secondly I remember reading somewhere that injecting adrenaline can be life threatening for that form of pots. Is there a blood test that I can have done by my primary care physician that can tell even more if it is hyperadrenergic pots? also is it safe to have both of those things done?Problem With Test Also Questio One more question is I believe that this could be secondary to an disease I could have. Reason: I'm 18 now when I was 14 I lost 40lbs in 2 months got acid reflux surgery because the doctor believed that was the problem and it turned out that i lost 20 more lb's after that. I still have not gained my weight back but have not lost it either so we quit trying to get to the bottom of it. Regular heart palpatations started when i was 16 with minor chest pain now it is way worse and definately have pots as well...... Last question: those with pots do you also have your heart rate shoot up with exerting very small amounts of energy? suppose lifting something? Thanks, - John

Happy Birthday! I'm happy that you are doing better as well! Go have some fun

Wow this metoprolol Is like working.... been on it for 2 days and now when i stand up my heart rate is top hitting 120.... but it's mostly staying at 108 no higher occasionally it will be at 83 so this is like yeah... I also feel more energy. Note! I never had my bloodpressure drop when i stood infact it would raise. but my heart rate would also raise tremendously. This is not the only solution for the standing and fast heart rate but it is a real start and now I'm excited Has that medication worked for any of you all the same?

Is it dangerous? It always feels like my heart just wants to stop. It's yelling to me saying I want to stop, I'm saying back to it no don't stop I also have not checked my bp when im having it, frankly I cannot move if I move it skyrockets higher. My hands are always unstable because my whole body just shakes.

Hello it's me from my first post: http://dinet.ipbhost.com/index.php?showtopic=10325 Just to note I did search for all possible answers using the search function on this website. I have that monitor still attached to me lol, I just got prescribed metoprolol not for the heart beat rising upon standing with blood pressure as well, but for these weird episodes I seem to get, have not had them in 5 weeks and it hit me again I was like " I'm dying". So the question is do you guys get anything like this and could this be a ANS issue, the doctors said it is not cardiac because no arrythmia even tho i have sent in premature beats before. All the ekg's show sinus tachycardia Episode usually starts out with me Getting very nauseous I usually go lay down because I feel sick, I do not throw up because i cannot from a GERD surgery i had. About 15 minutes after I get nauseous out of no where, my heart will go from 70 bpm to 210bpm in a matter of 7 seconds, I don't panic at all, but I can't breathe and my saliva disappears completely "nothing". My heart beats are very powerful, kind of like when you excercise. My heart rate will chill up that high for about 20 minutes and my hands and feet get really cold, sometimes hands go numb had one of my arms even go numb. When it's going on I feel every heart beat thumping out of my chest, as it is increasing i feel like my heart keeps hitting something when this is going on and it really hurts. To be honest tho, it scares the crap out of me. After it is over I start feeling a little better but I find myself zoned out, and extremely tired. about 2 hours I feel great like it never happened. Any of you all have anything similiar to that? That episode i was describing is what had one of my doctors go white when I had it in his office. That is probaly the only reason I'm started to get taken seriously. My Question of the day, What do you think it is? Winner get's props!

I'm sorry one more question do any of you guys just zone out? Completely I find myself just zoned out i could be in the middle of a conversation and do something and I just forget completely what I'm talking about...

Ohh ok, yeah my heart rate increases RIGHT away not even 5 seconds when i stand and it stays there. sometime I feel like my chest is going to collapse because occasionally when i stand up for a while or sometimes within 10 seconds my heart rate will drop 80 beats per minute in a matter of 4 seconds. It leaves my chest feeling like it's going to collapse literally. any of you expierience that? Also my heart rate jumps so much like up and down up and down. within 5 seconds apart it constatly goes 40 beats up 40 beats down. Also are you all really bad in the morning and as the day moves on does it start getting better? My heart rate when I wake up is about 90 bpm and stays there and keeps going to like 180 when i stand up, at night time it slows down to like 55 beats per minute and goes up to about 90-100 when i stand up, I also feel great then. Reason I'm shocked I have problems with any of this is I used to be a boxer used to have a resting heart rate sitting at 40bpm was in really good shape. This thing has just screwed me lol. Let me know if you guys have any of those things..... I really appreciate your help, reason I'm not posting in other threads is because I have not yet been diagnosed and really do not know much about this disease. After I get diagnosed I will be posting around here. I could also probaly donate 1 of my dedicated servers to help with hosting for this website, I am a webmaster as a full time job - John

I've only passed out one time recently when i had an attack (had an out of body expierience) all of a sudden i wake up remembering it and my friends told me I passed out. My mom said I used to faint when i was younger but i dont remember was along time ago saw neurologist he did not find anything. (atleast 6years ago) Thanks for the wonderful information definately going to check it out. I did forget to add I also have alot of insomnia don't know if that is related or not, would not shock me tho. My doctor does not believe I have POTS but does believe I have a form of dysautonomia, reason is my blood pressure does not drop when I stand It goes actually pretty high. (He is not a dysautonomia expert tho) He did tell me if it turns out to not be a cardiac problem he is going to send me to Vanderbilt University In Nashville, Tennessee. btw, does POTS go away in some people by the time they are of 35 years old? I'm curious.

The electrophysiologist is who said I probaly have dysautonomia and who did the tilt table as well as the heart monitor that is going to be hooked up until the 30th of june.

Hello, It all first started with chest pain beginning June 2007. I went to the cardiologist, he ran some tests. In August he said I had pulmonary hypertension. About 1 month later he said I do not have pulmonary hypertension the pains subsided but I started getting really tired all the time. I was in Colorado at the time and was trying to get out of the altitude because with pulmonary hypertension you cannot live in high altitudes. I also got strep throat twice in November which was strange because I have not had that for like 8 years. I am no longer in Colorado. I am sticking with lower altitudes until the Drs are able to resolve this issue. Since I returned to a lower altitude I have had so many problems I thought it was an arrythmia for a while because I would just feel awful and my heart would just take off really fast. I had that problem for about 1 month before I went back to my cardiologist, at the same time I have been to the ER 5 times I thought something was seriously wrong. I would have spikes high in my blood pressure and my heart would go to 180 for no apparent reason. I was on my way back to the Houston Texas from Arkansas, My mother was driving and I felt this HUGE ripping in my heart next thing I knew I just extremely dizzy started to see colors everywhere, next thing I knew I checked my pulse I could not feel it everything was getting horrible I'm like call 911 now. Parts of my body started going numb and (I just started shaking rapidly not a seizure). I got into the ER they told me my potassium was low and sent me back out. I have been to the hopital more then that with potassium ok, I got to see the cardioligist he said it was an endocrine issue also said let Texas Childrens deal with it. I ended up going to Texas childrens, seeing the surgeon I had for fundoplication surgery for GERD. He got me into a renal doctor she noticed my blood pressure went WAY up when I was sitting and standing, On top of that my pulse raised to about 180 sometimes 199 when i stood up. She ended up putting my into the hospital where they did tons of other cardiac tests and also checked me for a Hormone producing tumor called pheochromocytoma, everything came back normal and they released me and said it's nothing. Even my Primary Care Physycian saw an attack happen to me in his office turned white in the face and said get to ER now don't even wait for an ambulance. I got into the indocrine checked me out completely nothing was wrong, saw tons of other doctors and they all said Cardiac so I went back to the cardiologist he said he thinks I may have some form of dysautonomia which I had already researched alot. He hooked me up to a monitor for 1 month to clock my heart whenever it goes over 150 and runs an ecg which i send it via phone. I also did a tilt table test and my heart went way up as well as my blood pressure, ( Don't want another one of those) lol. So now I'm stuck here with this heart monitor writing this. All I know is whatever I may have it is kicking my butt hard. It's like going into a fight with a professional boxer blindfolded. stuff I have. Dialated pupils, slow heart rate, fast heart rate, very low blood pressure, very high blood pressure, chest pains, I almost always have a palpatation I always feel my heart beating, I cannot gain weight I'm 16.2 body mass index ( I eat alot) I'm tall and skinny . Tons of just aches, I am Constantly Tired occasionally I'll just get this big burst of energy from no where. I have a very hard time concentrating I'll forget what I'm talking about in the middle of a conversation. I definately have a fast heart rate when I stand when I sit it's normal and when I lay down for a while It goes very low. Also have been getting nauseous lately just feeling sick that is the bottom line. Do you all think this could be dysautonomia, if so what form do you think it could be? I really want to get a diagnosis and hopefully get better, I'm 18 was in the ER on my birthday because of this stuff. I'm pretty blessed in the respect I work from home since I own alot of websites but it still gets hard to work at times. I don't even know what to do anymore. Grrr, The suspense is killing me lol. I look forward to your responses! Thanks, - John