erikainorlando

I also forgot to add...I always feel kind of weak, chest hurts, head hurts....so I didn't notice that much difference...or not that I remember....but I forget a lot of stuff lately too!! Let us know your results!

I had heard terrible things about the ttt. I went to the ttt and fully expected the worst..mine was not bad at all. I just stood there and my hr went wild....we didn't even complete the whole time of the test...the doc started reading nots on POTS from the internet to me as I stood there...the nurse adminstering the test was amazed...had never seen anything like it!! I was happy to have a diagnosis...and honestly...they can do any test they want if it might helpl me...I have insurance...and the worst for me was not knowing what was wrong but knowing something terribly wrong was gonig on....the only bad part was not being able to take my toprol for a couple of days before the test.. Keep us postedd... Erika

As I lay here feeling like I have had the rug pulled out from under me...and i have been resting for hours...I ask why am I so weak? I feel like I have been hit by a bus....am walking thru concrete...can't lift a plate... I hear others complain of fatigue but I don't feel like I need to sleep...I am just very weak... As usual...after a good nights sleep I will be better...then I will as much as I can then after a few hours it will feel like someone pulled the plug....sometimes I shake when I try to do things after I get to this point... Thanks.. Erika

Thanks all! I knew I came to the right place for dys knowledge and experience!! And Kayjay - yes....i was told to not take the whole bb if my BP went too low... Thanks again...Erika

Even with my tachycardia in check (on toprol)...I have many bothersome symptoms!! Not the least of which is this diahrea!! I ate a big dinner .... by the time I was done I was running to the bathroom!! I haven't stopped....cramps...terribly sick...neurologist says all paret of the autonomic dysfunction probably...............so..I know there are many symptoms associated with dysautonomia...not sure how to re-regulate all of me............prozac seemed to help but then after about 1 month on it my body got used to it and started it alll over again... Good luck...Erika

Since bb's I am back to my normal weight!! I had lost 10 lbs...and was grossly underweight at 97 lbs!! BUT I do think diet is so important. I like what was said about high protein low carb diet!! Even with th glutton..or without it!! The only real drw back here is that we feel well enough to cook!! I personally stuggle to be interested in food these days. I don't feel well so much of the time. Anyway...good luck. Erika

I think I really just have POTS. I don't seem to have issues with BP....but I do have a few questions if you all don't mind. I guess first, am I the only one who only seems to really have difficulty with just HR, not BP? My TTT indicated my hr increased by 70+ bpm...but not real indication of my BP being abnormal. However...my BP is normally kind of low. I am on toprol for my HR but I know they wanted me to periodically check to make sure my BP was still ok...as it can lower the BP even more. My BP this am standing was 82/64....laying down was 102/75. This was before the toprol (altho I take the XL kind and I believe it stays in your system a while. What is considered a low BP? What is NMH? Thanks so much!!! I have started looking this up online getting confused..and thought you all were a better resource anyway!! Thanks. Erika

Honestly I just wanted to add that I have heard of the enlarged heart thing. One doc had mentioned that my heart would probably get enlarged if I did not do something to slow it down (but that doc wasn't a cardio guy). I am sure you have already done your survey but I need to also say that it is hard for doctors to say how long it will take to recover if at all. No on ever gave me a time line. Not even a guess. So anyway...so much for my staying out of it...but that has been my experience. Please let us know the results of your survey. I think another important point is whether it is a secondary condition etc. Good luck...Erika

Honestly...it doesn't feel like a bone..nerve...chiro thing. It feels like the cartoid artery. I used to get this a lot!! Terrible throbbing pressure before toprol. I really used to think I was gonna have a stroke...then they relized my hr was so high...altho it is controlled today with the meds. But today it is more on the left side...again...brought on by standing or movement... I am just hanging in my bed...having my daughter serve me lots of liquids as I am sooooooo thirsty...too!! Thanks guys... Erika

I laughed and laughed at the egg drop soup!! Husbands (altho I just have a boyfriend at the moment) can be wonderful medicine!! That is nice that you have such a great support in your life. It is so hard when our usual remedies don't work...I ordered lo mein myself tonite!! no way I was cooking. But I have to say usually all the salt in the Chinese food does me some good. Altho...I am so dizzy tonite I am walking with one eye open when I have to move around!! My eyes don't focus right when I am real bad. BUT I am hanging in there and the nech pain is better as I have been reclining for hours (and hours..and hours...) Erika

I just want to add...as has already been said..get a cardiac workup if you have not had one. I have had it all...including a cardiac cath. They told me I have the arteries of a 16 year old girl and I am 46!! I feel pretty comfortable that my hr is sinus tachycarida...altho I have quite a few PVC's and plenty of ventricular events on a holter monitor...but for me...I usually try to ride it out anymore and assume it is POTS stuff. BUT if it doesn't "pass" when I lay down (altho I have to lay down for a while)....it would make me really pay attention. AND you know when it is an emergency...or even if you think it might be....I think the ER is the palce to be...even tho we hate. Erika

I just have to ask. I feel so bad today. I did a lot of actiivity for me this weekend. We actually were away from home and I was so proud that I was able to go away for the weekend...altho I still layed down a lot. Anyway...I did so good I thought but today I can barely function. I am sweating. If I stand I get terrible pain up the left side of my neck throbbing....and up my face and left ear. My hr really isn't that high...I am on my toprol. ButI am so weak and dizzy. My head feels like it will come off when I stand. Along with all this...I am so upset as I really was so proud of being able to go anywhere even in a modified form. I started thinking "Erika...you are really getting the hang of this and getting better"..I could barely get my body up from the bed this morning... Anyway...any input? Thanks Erika

Boy - after posting that...I have had such a bad day.....I have been really off the chart over here today...worse than my norm...predictable self. Anyway...Jan, I had a virus in Sept. and never got right after that. Felt wierd and off. Periods after any activity of being "so ill". Had to lay down. It took 4 months before anyone really got that it was my hr because they only took my hr sitting (which ...by the wasy was still pretty high). However, you bring up an interesting point..as I think back to a stress test in December. My hr reached the "limit" fairly quickly but honestly in March I had a TTT done and my hr went from 85 to 150 within seconds. So...I think I do wonder why I was able to pass the stress test...can it be that I did have POTS symptoms but it got worse with time? My real inability to stand at all...and function in anyway considered normal started in late Dec. BUT I never felt right after the virus....does that in any way sound like you? Thanks.... Erika

BellaMia - Thanks so much for that web site!!! I am starting to look at it. By the way...do you all know if we are part of NORD? I didn't see POTS listed...are we not considered a rare disease? Thanks Erika

I think I am getting more used to it. I am trying to lower my expectations of myself. Which helps a lot. Then I think I may (and emphasis is on may) be doing a little better. OR I am learning how to handle this better. I tell my kids tht every move I make is calculated...so don't mess me up!! What I mean is...try to tell me everything we need at the store because I can't run back out...I can't run them to a friends house if I am not rested, I can't go to a movie and then do anything else...for a while... I tell my boyfriend that when I say "I can't"...I can't...not for one second more...no matter what it is.. I rest a lot...I love my laptop...I try to remind myself that it could be much worse. BUT I know that in the middle of a terrible spell...it is hard to imagine that it could be worse..but it does usually pass. I think you caught me an up day!! Erika

I have had times when my hr has been very low but I think it is due to the toprol. Now having said that very low for me is around 55-60. But I have to add that I feel pretty bad when my hr is not high enough. I mean I am not happy when it is over 110. But I do almost think the low hr makes me feel worse...the high hr I can sit and pull it back togehter. The low hr...well I don't know how to fix that... Good luck....at least it sounds like you have a good doc that you can emial and ask questions of.. Erika

I have read a lot about the unpredictabiltiy of the symptoms of POTS.. I just don't have tht kind of unpredictabiltiy. Everyday I struggle...I can get up and get going for a short period of time...then I have to recline for several hours. It is always this way!! Nothing unpredictable. Somedays I have diahrea (most) but other than that no unprectability. I get "sick" periods everyday. It is always related to how long I have been up and how much activity I have done. Don't get me wrong...sommedays are a little better than others but for the most part it is pretty consistent. I got POTS 10 months ago after a virus...and I can't really tell if I am any better...although my symptoms are better with toprol. Am I alone? Thanks, Erikka

Bella Mia.. Where do we get the "POTS made simple" for partners? I would love to get my hands on this... Thanks so much!! Erika

It is a great topic. Thank you. All my relationships have changed since POTS. Including with my kids....whom I really feel bad about. BUT in all my relationships...I can't do half. Not even close. I am just surviving...half??? Wow...not a chance. It is not a quesiton of what is fair...none of this is fair....to anyone. Even to those involved with us. My eyes well with tears as I write this. I try to do things for my kids...I can't. I try to be fun for my boyfriend, I can't. I order out a lot. My daughter cooks and cleans. If anyone messes my house I freak because I can't clean it up!! My boyfriend has been pretty good. BUT we don't live together. Although he never expects me to push thru..he tells me to rest a lot. My biggest complaint with him would be that he dinesn't talk to me much about how I am feeling...physically...and emotionally. He will fix my car and do my lawn etc. I guess his way of showing love and support. The problem comes in that I interpret his lack of communication on the supbject tht he is tired of hearing me. I know he gets tired dof hearing me it is normal and he has told me on occassion that it is trying at times. My kids get tired of hearing me too. But my lie is life walking on swords most of the time and I need a lot of support to get thru it. Being sick is so hard on all relationships. BUT lazy??? Wow..lazy..no kidding...how could anyone think we are lazy....the fact that we keeo functioning and tryinng is truely amazing and shold be commended. Good luck.............perhaps he doesn't understand tht it is just a physcial impossibility...or perhaps he doesn't want it to be..try to communicate......... Like I said...it is a great post...as we all struggle with how taxing this is on our relationships. Erika

I just got to read the rest of the repilies until now bu tI really apprecitate them. Nina - I can't imagine your dad saying that...boy..what makes people tick sometimes?? And I am going to just delete those emails...before reading... Marni4u - I am so sorry you have to go thru that. Maybe you can give the psychiatrist this web site? Honestly...there was a time before I was diagnosed when I even started wuastioning myself...like "do I really feel this bad....or am I just somaticizing (my psychologcal background here)...some life difficulty". I don't know who created this forum but thank you so much. Support heals.

Rama - I always appreciate your posts anyway!! We have so many obstacles tht others don't really have or I suppose some justhave different ones. Great job on your presentation! EM - you made me laugh so hard...more trips to the loo than a drug dealer...and that is no kidding...I wouldimagine if someone was to really following me thru a day they would think so much of what I do is off..............but it gets me thru the day...as I say to my kids when I am really feeling guilty..I am just really doing the best I can! Erika

Honestly....after any real activity I get very ill. I am sitting here feeling awful...I triedd to do some swimming with my kids and I now even on my toprol my hr is 117...altho I don't even have to have the increased hr to feel awful...the key to feeling bad is activity.. The key feeling better is no activity and laying flat.............then the cycle starts again. Someone on here smarter than I can tell you why...but yes..I get get headaches...pressure in my head..my nose runs...I shake feel so weak I can't even stand...after activity.. Erika

You guys are so great. Thanks for your words of encouragement. Kits...you really did make me laugh. Yes...why on earth would we fake something I didn't even know it was possible to get!!! But it is the insult to injury thing...like "wow...I am really not asking for any special treatment...I just am trying to survive the best as I can..so please just don't give me a hard time for being ill". And I guess for those that do give me greif for being ill...well, they don't get to come stay with me. Erika

Hi. Just wanted some support. My sister and her 4 year old were to come to visit at the end of the summer. My sister is borderline personality and kind of volitile under the best of circumstances. I really thought of this and decided that I did not want to have her stay and add anymore to the mix at my house. I am a single mom of a teenage daughter and 11 year old son. My kids are great...but I am really challanged with energy even for them. She had left me a message with a bit of a tone and I responded with quick email that I thought visitors would be a bit much for me. She sent me an email saying that I have always been sick...broken bones, Guillain Barre syndrom (I was paralyzed for 6 months), and now this...and it is my karma..like I deserve to be ill. Now, although that was very hurtful. She sent another email (she is kind of off and keeps sending emails...and emails..in succession when she is angry). The next email said she at least works and is not faking illnesses to get out of working and get everyone's attention. My head is spinning. As I write this I know my sister is a nut job. But...I am really hurt. I also have nerve damage in my legs from Guillain Barre that would indicate me never walking unassisted but before POTS I was playing tennis (although not well ). I am not a complainer. I guess it just hit a nerve as with POTS I know that to see me breifly on one of my good days..you would not understand that I can't get around for more than a few hours without a "sick' spell...where I feel like I am dying and have to lay down. Or that I have to plan when I can taked a shower and dry my hair. Or that I can't go to the bank and the grocery store on the same outing..........and that I have at least 4 episode of diahrea a day and tht is nothing compared to those "sick" spells after standing or minimal activity. I just needed to vent that. I like all of you try so hard to be normal but I am not. Maybe I will be one day but I am not there yet. I can't imagine someone thinking I would fake POTS of all things.. But I was sure that if I put it in a post you all would probably have had family members that were less than suportvie. Thanks for listening guys..... Erika

Thank you...and yes, Jan, if I pass this test I will have my degree masters in counseling psych. I will have to do my internship before I can practice............ I am not sure how I will manage that but I really didn't think I could study this summer with two kids at home and POTS... , maybe someplace will let me have a lot of flex hours and only come in a couple hours a day...not sure yet.. You should have seen me in the exam...I asked to have an extra chair so I could put my feet up (you all understand!!). They told me I could lay on the couch if I needed to..I didn't... but was very happy to get home and lay down!! Erika